Gilly Update

The blog ends here

2007-01-19T10:49:00.000-05:00


SCHWAGER, Gilly. On Thursday, January 18, 2007. Most precious husband of Cindy Blauer. Adored father of Tamara and Yaron. Beloved son of Sema and George Schwager, and Jerry Friedman and son-in-law of Shirley and the late Haskell Blauer. Dear brother and brother-in-law of Gad and Talya Schwager, Gittit and Yuval Peleg; Nitai and June Friedman, Aviyam and Cynthia Friedman, Hadar and Elana Friedman and brother-in-law of Fred Blauer, Joey Blauer and Susie Mayers. He will be fondly remembered by his aunts, uncles, nieces, nephews, cousins and many friends. Funeral service from Paperman & Sons, 3888 Jean Talon St. W. on Friday, January 19 at 2 p.m. Burial at the Beit Abraham Congregation Section, Kehal Israel Cemetery, D.D.O. Shiva at 5768 Palmer Ave., C.S.L. Contributions in his memory may be made to Beit Halochem, (514)482-6548. Published in the Montreal Gazette on 1/19/2007.

2007-01-18T15:37:00.000-05:00

Gilly passed away at a few minutes to 3:00 PM today, January 18th, 2007.

Funeral services are to be held, tomorrow, Friday, at: 2:00 PM, at Paperman & Sons, 3888 Jean Talon West, Montreal.

Still very little to report

2007-01-18T08:57:00.000-05:00

Gilly, Cindy, Tamara and Yaron are camped out at the Jewish General. Loved ones continue to pop by and help pass the time.

Gilly's condition remains the same. He did develop a fever yesterday, which is being treated with tylenol.

No change since yesterday

2007-01-16T19:50:00.000-05:00

Gilly is still sleeping soundly surrounded by loved ones.

A restful end of the day

2007-01-16T12:07:00.000-05:00

As of last night, the accommodations at the Jewish General were certainly comfortable. Gilly was placed in a private room, in extremely good condition, and with a reclining chair for Cindy to relax and sleep, if at all possible. There’s a comfortable family room down the hall, with television, chess board and fish tank, providing a much needed change of scenery for the family, when they desire.

When Gilly arrived, the nurse changed his butterfly attachment for medication. Gilly reacted to the slight pain that the procedure caused, which we take as a sign that he is not otherwise experiencing pain – of which we are pleased.

As Susie, my Mom and I left at around 11:30 PM last night Gilly was sleeping soundly, and seemingly very comfortable in his new surroundings.

Another quick update

2007-01-15T20:50:00.000-05:00

This is now Joe, filling in for Tamara, filling in for Cindy.

Gilly has just left for the Jewish General Hospital, where he will be admitted in to the department of palliative care. Matters should be expedited due to the involvement of his devoted nephew Evan, who initiated the process.

All of what Tamara said in her last heartfelt post applies. I will try to keep you all posted of any developments, though not nearly as eloquently as you've all become accustomed.

Pinch hitting at the bottom of the ninth…

2007-01-15T18:27:00.000-05:00

(This title seemed to fit the image in my head, I’m no Cindy but I’ll give it my best shot.)
Tonight is a very difficult evening for all of us, so I have taken it upon myself to write the blog for my mom. Today was a day of crucial decisions, and most importantly we chose not to admit my father to Mt. Sinai. Unfortunately the events of the day have led us to question our choice… Gilly started to run a fever just after the final decision not to admit him today was made, a sign we were told would indicate what unfortunately lies ahead. He also started to have a more pronounced seizure as soon as the nurse left. Regrettably, we were unable to admit my father so late in the day, and we were told that we would have to wait until Wednesday for admission.

We are waiting for a doctor from the hospital to come and assure us that everything is okay for the night, and we will proceed accordingly once we have all the information. We always have the Jewish General as an option, but we prefer Mt. Sinai for my father’s comfort. As with anything in life, there can be no exact predictions as to how long we have left with Gilly, therefore we are taking this opportunity to form our close four-way huddle (I will definitely be sleeping here for the next few days) and spend the rest of our time together.

I would like to personally thank all of you who have shown us so much support and love during this time, and to assure you all that we love you too, and we appreciate everything you have done, and continue to do for us, and for my father. We are truly blessed to have you all in our lives, and as frightening as the future seems to me right now, I take solace in the knowledge that my family is lucky enough to have such an unbelievable network of loved ones, friends and family alike. I am unsure of how the blog postings will continue for the next couple of days, but since I realize that our immediate family has multiplied exponentially since my dad’s illness, I feel that all you faithful bloggers deserve to be there right alongside us. Therefore, I will do my best to continue posting any important developments as they occur here, or my Uncle Joey will step in. Please use your best judgment for calls and visits. We welcome your support, but we are under an enormous amount of stress so please call beforehand, and refrain from calling too late in the evening. I can’t say enough how wonderful all of you are and how much easier this unpleasant time is because of your love. Thank you.

Firsts are difficult to deal with

2007-01-14T21:52:00.000-05:00

Gilly had many visitors today (as expected, and some pleasant, yet unexpected). Unfortunately, health-wise, it wasn’t the best scenario; he was running a fever for the first time. Eventually, the medication brought the fever down, and he is resting comfortably. It was a scary experience, but I had a lot of support (on both a personal and professional level).

Gilly is beginning to appear very ill; less eating and drinking is taking a toll on him. He did not respond to people today in an overt manner, but I strongly believe that he sensed their presence and appreciated the love that was bestowed upon him.

Love at first bite

2007-01-14T10:37:00.000-05:00

The arm is slightly improved, so I will post today. Maybe I’ll have to revert to every second day or so, though, because I was told to give it a rest. The pain killers and anti-inflammatory medication are working, but not enough to really resume activities completely, and I need to reserve for what needs to be done.

Thursday evening started off with a visit from Steven (actually he was around afternoon as well, but I was at work). There was very little response from Gilly until later in the evening when Steven entered his visual field. He clearly exclaimed, “Oh my God.”

At approximately 2:00 A.M. Yaron noticed that Gilly’s leg was shaking uncontrollably. He had a 40 second bout of shaking that very morning when Cathy the nurse was here providing a training session for Elise. She said it was a small seizure and to track the occurrence if it happens again. It didn’t stop, so I called the all night medical hot line for the very first time. A nurse arrived at 2:30 or so, and by 4:30 Gilly had received new medication (by courier from the Gare Medicale’s main office out east somewhere) and he was fast asleep. The seizures had stopped.

On Friday, Golda Tradunski from the Mount Sinai Hospital (who I renamed Dr. Ruth, explaining it’s the image her name brought forth in my mind, only to be shattered by the realist; she’s young and ever so sweet) spent four hours here with her nurse, Judith, equally lovely. Dr. Golda readjusted all the medication and clarified many questions for me. She has officially taken over Gilly’s case, so if he needs to see a physician for any reason, she will come to the house.

Josee-Marie caught wind of Gilly’s seizures, and so she too made a visit while Dr. Golda was here. She insisted, even though I assured her we were being well taken care of. She was so desperate to come that I acquiesced, and so began the debates on medical practice. I let them thrash it out, but I had mentioned to the Mount Sinai team that the protocol differences between the CLSC and D’Entraide is confusing; I do not know who to listen to. They both stood their ground and helped Josee-Marie compromise so that I could be the recipient of one order of instructions as opposed to two. This in and of itself was exceptionally helpful.

He had a few mild, short lived seizures while the Mount Sinai team was around, but nothing to write home about. The change in medication obviously helped. I was uptight about potential seizures for the remainder of the weekend, especially since I was to be gone for much of it. I felt very strongly about attending Noam’s Bar Mitzvah, and I’m glad that my reservations did not prevent me from taking part in most of it. He was fine, and in safe hands with Elise, Tina, Marvin, Sharon and Rosanne (not all at once of course). We are so very fortunate to have such amazingly kind and dedicated friends in our lives. Words cannot fully express how thankful we are to these angels.

Gilly has moved onto another chapter; he sleeps pretty much always, but with his eyes kind of opened. He responds very rarely to people in an external way, but I am certain he feels the presence of the loving people who have paid him a visit in the recent past. Many family members have taken the time to pay a short visit, since they are in town for the Bar Mitzvah. I sincerely believe he knows that they have visited, even though he did not greet them in any way.

He still eats and drinks, but getting the liquid up through the straw is arduous at this point. We use foam tipped sticks and small spoonfuls to hydrate him. Last night he chewed off the foam from the stick and wouldn’t open his mouth for me to retrieve it. He bites hard, let me tell you! I finally managed to pry his mouth open and get it out, but it took me quite some time and I was in a sweat by the end; what a tense struggle that was.

All medication is now taken in liquid form, which makes it much easier, but it was a challenge finding the pharmacy that could prepare the suspension. We’re still waiting on one type of medication, but luckily it is not as crucial as the others. Hopefully by tomorrow the pharmacist will have found the best recipe. I’m learning so much through this experience.

Gilly continues to appear as if he is free of pain or any sort of discomfort. I can only hope and pray that his peaceful existence persists, but if not we are poised to provide pain killers of the highest order.

I will sign off, because John and Stacey are on their way.

There were 4 in the bed and the little said, "Roll over."

2007-01-10T17:28:00.000-05:00

My right arm is in lots of pain, so I am going to have to take a few days off from posting on the Blog. If anything BIG occurs, I will make sure to pass the news along through someone else. It’s an ergonomic problem and I have to be careful, so it doesn’t pay to fool around.

These pictures tell the story you all really need to hear. My husband is loved beyond measure, and he feels it.

The nurse from Mount Sinai paid a visit today, and the doctor will do her first house call this Friday. Belle echoed what the professionals have been saying all along; Gilly is in the best place he could be under the circumstances. He seems comfortable and serene; no pain is evident and he is well taken care of.

I will be receiving an additional 14 hours of service from the CLSC (now 28 hours) but from a different agency; supposedly the best and most expensive. They are concerned with Elise’s apparent lack of training for palliative care, and so they have just about had it. I will not let Elise know until after the weekend.

Remember, please allow me some time to recuperate (arm-wise); do not worry that I stopeed writing for a few days because something is wrong. I promise to post any new development. You’ll just have to read the funnies for awhile and trust me on this…I haven’t let any of you down yet, and I do not intend to.

I will resume on Monday, good arm or not, to provide an update.

Gilly deserves the best of care

2007-01-09T20:49:00.000-05:00

A quick note to report that nothing much has changed. Gilly eats a little less everyday, it seems, mainly because he is sleeping more; as soon as he awakens, we run to get the food, and during this time frame he often falls back to sleep.

Elise is dependable, but clearly not anywhere nearly as good as Raquel was. I have to leave her during the day for a few hours, and I am not worried about Gilly’s safety, but she needs reminding for several mundane tasks, and so on, so when I’m away, they do not get done. She’s quick to do whatever it is she has forgotten once reminded, but I wish I didn’t have to go that extra step. Too much brain work. We wrote out a list of everyday ‘duties’ related to Gilly’s care. She does absolutely nothing else, so it should be easy to manage, but she doesn’t. Nothing serious, really, but I do like him to be as clean and comfortable as humanly possible; perhaps my standards are too high!

My weekdays are very full at this point, so I will not have much time to write at night. Short updates will have to suffice.

Huddle

2007-01-08T18:42:00.000-05:00

It was a busy day for me on all fronts. Elise helped Gilly with breakfast while I tried to find answers; he was coughing a lot and seemed to be ‘gurgling.’ His eye was tearing and his nose was dripping as well, so I called the nurses station at D’Entraide Ville Marie for instructions. The supervisor suggested I order some medication for secretion and give it to him. The one we have here on hand expired on January 2nd; it lasts only a week, but Josee-Marie suggested I wait before reordering, since the holidays are over and the pharmacy is open 24 hours and delivers. I called the pharmacy at about 11:00 a.m. It is now 6:22 and I’m still waiting for it to be delivered.

The nurse (Christine, who replaced Josee-Marie today) checked him out later in the day and he seemed fine to her. His coughing spell lasted only an hour, so who knows what it was?? In the meantime, she installed two more butterflies in case more than one type of medication will need to be administered. They don’t like to put the different medications into the same tubing, in case he has some sort of reaction to one of them.

I did some work at home and went into my office for a couple of hours. Nothing too exciting took place, so it was a relatively productive day for me, thankfully.

Daniel showed Elise and me how to wash Gilly hair in bed, using a special basin which he left for my use on weekends. Elise is an eager learner, but somehow I would have expected this sort of thing to be familiar to her. These agencies should invest in some workshops that Daniel would be more than capable of leading. I mentioned this to Josee-Marie, but she quickly rejected the idea, because Daniel is in such high demand.

Auntie Ruth and Jerry stopped by for a late afternoon visit. I took the time to sit and chat, because I simply needed a break. It was a pleasant way to spend the time, knowing I had accomplished all that I set out for myself for the day (unusual, but true).

Tamara will return home tonight as soon as her brother returns from his trip to Florida. I am anxious to see Yaron (it’s been a long week), but I am sorry beyond measure to have to let go of Tamara. She takes care of both me and her father in her own special way, and words cannot begin to describe how well she accomplishes this feat. It ain’t easy, let me assure you.

I know she’ll be around often, but she too has to return to work, so I am anticipating separation anxiety from all 4 ends of our immediate family. It feels so right to form a 4-way huddle, and we do so whenever we have the opportunity. Our friends and extended family help fill in the gaps when we cannot be together (and often even when we can).

Gilly continues to sleep for extended periods (practically always) but does not indicate pain or discomfort. He is a good sport of the highest order!

Every good boy deserves fugde (EGBDF)

2007-01-07T22:00:00.000-05:00

Internet rules the world; in order for me to take advantage of the home front as a place to get some of my prep work done for teaching, I must have access to Internet, but my computer has been acting up lately, and this creates extra stress in an already stressful situation. My baby brother came by to look into the problem this morning, and either he managed to fix it, or his timing was just right. Whatever the reason, I am back in business. I was actually able to put together all I planed to accomplish over the weekend, which is nothing short of miraculous. Thanks Joey.

Gilly slept through much of the day. He had breakfast at 3:00. His sleeping pattern has changed. He is no longer restless, and sleeps with his eyes slightly opened. Perhaps he is dreaming a lot. He seemed oblivious to what was going on around him, but tonight when he woke for dinner (around 8:30) he was much sharper. He chowed down the chocolate fudge from Marvin and Sharon; I wasn’t afraid he would choke, because it was the melt in your mouth, soft type that he adores. I called to tell the Zigmans and he actually answered Sharon out loud; he hadn’t spoken for more than 24 hours; we were excited to get a rise out of him.

He’s tucked in again for the night. Eating tuckers him out, even though he rarely holds the spoon and drinks from a straw with the vessel held by someone else. Elise will come tomorrow for 7 hours; we’ll see how the day goes. Hopefully, her assistance will continue to ameliorate the situation.

I don't know what to call it tonight

2007-01-06T23:58:00.000-05:00

Gilly never made it to the table last night, but Susie, Joey and Fred were still here when he awakened, so they joined him in his room while he had some dinner.

Tamara helped me out with all sorts of care giving tasks (big time!); not sure what I would have done without her. He slept away most of the day, sometimes seemingly with his eyes almost open. He looks around the room often these last few days, sort of wide eyed with a surprised or bewildered expression. I’m not sure how much he continues to understand of what goes on around him; he communicates less and less each day. He doesn’t even nod yes or no consistently anymore (even though no often meant yes and vice versa).

Rosanne and Sharon came by to drag me out for a walk this afternoon and then to dinner and a movie this evening. Both outings did me a world of good. Tamara and Max stayed home to care for Gilly. We bumped into Tina and her mom at the movie so we all grabbed a bite together which was an added bonus; like icing on the cake. I enjoyed the change of scenery and savoured every minute of diversion. Gilly remains foremost in my thoughts no matter where I go or what I do; I go with it and bring him up in conversation often. It is impossible not to, especially when in the company of devoted friends and family.

The nurse came this morning at 8:00 and will return tomorrow at the same time. I have to get in a few naps before then, so I’ll sign off.

Love in

2007-01-05T18:24:00.000-05:00

I spent the night in Gilly’s room with him because he seemed unable t fall asleep. I slept better knowing that he was right beside me and I simply had to open my eyes to check on his status. He went to sleep as soon as I tucked myself into bed beside him. We have to do what works best. Tamara and I were still not ready to give him medication for agitation; this solution worked just fine. I was actually more comfortable on the sturdy mattress (used to be the bottom bunk of my kids’ bunk bed than on my waterbed (which I want to get rid of A.S.A.P.).

It was a busy morning, but Elise returned at 11:00 on the dot, as promised, with a smile and warm greeting for Gilly. He had never actually met her before, since he slept through yesterday’s shift, so she introduced herself and took over.

Elise is really a pleasure to have around. I think we will manage together famously. I’ve decided to try her out four full days next week to see what that would be like, because the following week I’ll need to be back at work much more physically. She has agreed to stay with Gilly next weekend during the festivities surrounding Noam’s Bar Mitzvah, so if all goes well, I could be home free. I’m keeping my fingers crossed (toes too).

I was more than relieved when Cathy the nurse showed up, because I had questions galore. She usually comes very early, but today arrived at 11:30. I was antsy, because I had a meeting scheduled for 1:00 with my Vanier twin and I didn’t want to be late. I had an appointment scheduled for 3:30 at Lethbridge (to pick up the new wheel chair – ridiculously late) and I wanted very badly to complete the task that Cathy (my Vanier twin) and I set out for today. Cathy (the nurse) was had an answer for everything, but she went over the time I mentally allotted to her visit, so I was late getting to Vanier. Luckily, we still managed to get everything accomplished in time, and I was early for my appointment at lethbridge.

Tamara stayed home this afternoon while I went out, and she became instant ringleader. She handles the role with ease, but agrees that the place is on wheels all day long. I am happy to have had the afternoon off, even though it was to work and do messages. I needed a break from the nuthouse. I am refreshed now and ready to face a brand new day tomorrow.

I received a call from Lethbridge yesterday announcing that Gilly’s wheel chair was ready and was asked if I’d like to pick it up. I countered, “What are my options?” “We can deliver it…” This was sounding good, “But it will cost you $50). “No thanks, I decided, “I’ll get it tomorrow.” “Well,” replied the gentleman, “You’ll need to call tomorrow for an appointment.” “For what?” I asked incredulously. “You will need a demonstration on how to use it, which takes 1 ½ hours.” I couldn’t believe my ears. I had t squish this journey into my week, unexpected and seemingly for little purpose, since he’s basically bedridden at this point, but I’d do anything for Gilly, so I set the appointment this morning and we’re all set for the trip from bed to the dining room table this evening if Gilly manages to stay awake that long.

The wheel chair is worth $2000, apparently and it is a Cadillac. He would have appreciated the workmanship and fancy gizmos if he could have seen it months ago. But he didn’t need it months ago; everything progressed very quickly. It was ordered in late November, I believe and they said it would take 2 to 3 months. Marilyn put a rush on it, and it took slightly less waiting time than usual.

When I set eyes on it, I wondered if it would fit through the doorway to his room, but the fellow who gave the demonstration showed me how to remove the outer rim (since Gilly cannot drive it with one hand, or he’d go round in circles) just in case. I was surprised to find that it fit perfectly.

It is so sad to think that Gilly could have been cozy in his chair all this time, but instead received this wonderful gift from the government just at the point that all the professionals have suggested he not be removed from bed except for showers if a big guy like Daniel is around or to eat dinner on special occasions (which Shabbat is considered in this house). He mustn’t ever be removed from bed while asleep, so this narrows the possibilities further. Cathy confirmed this today. His feet have been much warmer since we have left him in bed most of the time; she explained that this is because his circulation is better in a laying position than sitting in his chair.

The lift arrived when I was out this afternoon. Marilyn will be here on Tuesday afternoon to show us how to use it. It fits into Gilly’s room very easily, so we’ll see how easy it is to manipulate. The delivery men fixed the brake on the bed and brought some pads for the bars so that his feet and knees won’t stick out and he won’t get bruised.

Tamara has found a solution to getting closer to her dad; she hops right into bed with her ‘abbala.’ She’s the only other woman I would tolerate this behaviour from! Gilly seems to like it, so he steals some hugs and kisses when he can.

He slept through much of the day, but opened his eyes often when we entered his room. We’ll be hanging out in his space a lot these days, because I made the decision today that he has more opportunities for privacy when he needs it if he has his own room. We’ll just have to bring the party to him, is all.
Our family members will be here soon for dinner, so we better get Gilly spruced up. Shabbat Shalom to all.

Holding court

2007-01-04T21:34:00.000-05:00

I’m back to work this week. Although I’m dong my job mainly from home, it is still work that needs to be done. The level of activity going on in this house makes it ever so difficult to meet deadlines, but I’m managing. The phone rings off the hook, the door bell rings, and I am needed as the main coordinator of everything having to do with Gilly’s care. It would take me too long to type out how many calls I had to attend to today; most of them essential. Please understand if you were the 100th person I hung up on today; I have just so much time in a day. I am honored that so many people care and want to help by remaining in touch, but I cannot respond to every outreach now that I’m technically back to work.

The new care giver (Elise) is a keeper (we sincerely hope). She’s sweet, trainable, pleasant and hopefully dependable.

Gilly had a rather wakeful day after 2:00 P.M. He’s still up, holding court in his bedroom with Tamara and her friends. he had two very solid meals (ground up, but delicious) and he's in a responsive mood.

I was treated to a night’s sleep last night. Edward was here from 10:00 P.M. to 7:00 A.M. and surprisingly I managed to fall asleep for an extended period of time. Today’s level of activity around here frazzled my nerves, but I would have been even more nutso without the sleep I had last night. I think it’s a great service that was offered to me. The CLSC is trying to match the caliber of the guys from D’Entraide. I hope they succeed. Brad is working steadily on this mission. He is a devoted social worker.

Gotta get some necessary supplies and the store is closing soon, so I’ll sign off for tonight.

A day at the circus

2007-01-03T20:03:00.000-05:00

Today my house felt a bit like a circus for the first 4 hours or so. Josee-Marie asked me to grind Gilly’s food from now on because he is not swallowing properly. Yesterday, when she inspected his mouth at my request (since he bites my finger when I try to check his tongue for thrush), she found his pills disintegrating tucked in between his inner lip and his teeth. She explained why the crushing of the pills and food is the only way to go at this point with this information as her backup. I was taken aback. Perhaps she explained this in French yesterday, but I obviously didn’t catch.

While she was here a new caregiver named Cecille rang the doorbell. I was not expecting a change, so I was unprepared with new instructions for a brand new person, and so excused myself. At that moment the phone rang and it was Brad, back from his holiday wondering how the new caregiving situation was panning out. The poor guy got an earful. I walked downstairs so as to be out of poor, innocent Cecille’s earshot (not her fault and she seemed on the ball). Brad asked if I think it might be better to place Gilly at this point, but I said that I feel some of these matters could be worked out if there was consistency. It is tough over the holidays. I asked for 2 full days instead of 3 hours a day in the middle of the day, and mentioned that I would be willing to hire that same person privately for another two days. He said he’d try.

When I was done speaking Josee-Marie took the phone and asked Brad to arrange to send someone to stay over one night a week. She explained that that way we’ll have 2 nights covered, and I will be able to sleep.

When she hung up and saw my worried expression (I’m not good with change, as you all may have guessed by now) she questioned me again as to whether or not I feel it’s time to move Gilly to Mount Sinai. “I’m not ready. He seems to appreciate his surroundings and we can care for him better in our home,” I replied in a shaky voice.

Josee-Marie left and I went back to guiding Cecille through the now new ritual of caring for Gilly. She prepared his pills and Tamara ground up the pineapple. We waited, but he didn’t stir. Cecille left without ever seeing his eyes open, and I have no clue if she’ll ever return; time will tell.

Just as he was leaving, in walked Daniel; a revolving door, I tell you. He was not able to bring Gilly to the bathroom because he was sleeping too deeply, so he had a sponge bath instead. I hung around with Daniel to ask his opinion on moving Gilly to Mount Sinai. He assured me that Gilly is more than well taken care of, but agrees that the caregiver turnover is too stressful and that something must be done.

The doorbell rang and in walked Marilyn, the O.T. She was there to reassess our home in response to Cathy’s request (the CLSC nurse). She determined that we could accommodate a lift, but wondered where I would want to take him. She and Daniel both agreed that he is best left in bed where he is most comfortable for sleeping. I begged to differ, but was outnumbered. Daniel suggested we have a hospital bed set up in the living room because most home palliative patients are placed in the midst of the hustle and bustle of the home. The O.T. vehemently disagreed. I am now agonized with having to make the decision. We need a different hospital bed anyway, because this one has brakes on one wheel only, so I need to decide before the new one Marilyn orders shows up at the door. She will also send the lift to see if we can actually make use of it, and will come over to show us how to operate it.

Once these two people left, I was totally overwhelmed by anxiety and uncertainty. Too many decisions, and not enough knowledge and I guess strength to make them with assurance.

Barb stopped by for a few hours and we talked at Gilly’s bed side. I ruminated aloud about the pros and cons of all sorts of matters related to Gilly’s care and Barb listened. Gilly opened his eyes a few times; once to smile in greeting, and a few other times as well, but was never truly awake for any substantial length of time.

The phone rang on numerous occasions throughout Barb’s stay. Josee-Marie was one of them; she called to say that Francine Venne (Dr. Lapointe’s angelic right arm) will call me to discuss changes to Gilly’s medication. I took the opportunity to ask what she thinks about the hospital bed placement and she agreed wholeheartedly with Daniel. I gave her a short explanation of why I am hesitating (mainly to respect Gilly dignity) and she said she understands my point and she’ll be here on Saturday to go over the pros and cons with me.

It’s almost 7:50 P.M. and he seems to be awakening. Tamara, Max and I will sup with him in his room unless he seems strong enough to be moved to the dinner table.

It’s now 8:00 and his daughter brought him to the threshold of my office, all dressed and in his wheel chair; I guess the dining room it is! I have a dinner date, so I have to go.

Here's to the men in Gilly's life

2007-01-02T19:08:00.000-05:00

These photos are from New Year’s Eve. Marvin may never forgive me for publicizing the tender moment he shared with Gilly, but I couldn’t resist capturing it on film. What a Kodak moment (this expression is kind of outdated with the advent digital photography, but you know what I mean).

The second two photos were taken by Marvin; the New year’s Eve kiss (a few hours early) and the aftermath of the kiss.

I haven’t slept as soundly as I did last night for ages. At some point during the night Tamara went to check on Gilly and approached my bedside to provide me with an update, but she could not awaken me. That is really something. I suppose I am able to relax knowing that I have a coconspirator living with me. Yaron is great, but he isn’t home all that much. Tamara tucked herself in for the night at the same time I did, so I guess I let myself fall into a deeper than usual sleep.

We had a code worked out; one stomp on the living room floor means Gilly’s fine and Tamara can stay downstairs, but 3 stomps means I need assistance. It was a one stomp night (on two occasions; I slept through the rest).

Today, Josee-Marie returned and gave Tamara a demonstration; now two of us know how to administer medication through the butterfly. She appealed to us not to be frightened, and to give it to him so he can relax and rest peacefully at night. “It cannot harm him,” she assured us. We’ll decide together if it seems necessary tonight.

He had a good day; he was awake for breakfast and a visit with Jerry, and listened to Steven over the phone for about ½ hour. He kept answering with umhmm’s and no’s and O.K.’s; his responses seemed to motivate his devoted cousin to continue. It was really quite amazing. Steven must have a case of laryngitis by now, but Gilly loved every minute of the conversation.

We are expecting Barb tomorrow. It’s so hard to know how the timing will work out, but I hope he will rise to the occasion.

Tamara, Max and Leora are here for dinner. My kitchen is buzzing with young voices. I think I’ll join them.

Powerless

2007-01-01T22:24:00.000-05:00

Our evening was warm, low key and just right; Gilly was a part of the festivities until about 9:30. He joined us for dinner and seemed aware that he was surrounded by love. I couldn’t get to sleep after everyone left, and Gilly needed my care giving during the night, so I remained in bed until Patty showed up this morning at 11:00. Unfortunately I missed the nurse’s ring at 8:00; I must have fallen into a deep sleep, which is rare these days (someone, who shall remain nameless, forgot to give me the message that she would be stopping by at that hour). She returned later on in the afternoon; what a sweetheart.

Patty, the new (hopefully soon to be ‘most recent’) care giver is happy to oblige with anything I ask of her, but really has no experience with palliative care; her common sense doesn’t take her far enough (which is a polite way of saying she doesn’t have all that much to go on or to problem solve with). I will have to ask Brad if a different arrangement can be made, but he is not in his office until Wednesday. Thankfully, Tamara is spending the week here with me, so between the two of us, I have every confidence that we will manage. I just have to find tasks for Patty to do, but not leave her alone with Gilly.

Josee-Marie suggests I crush Gilly’s medication from now on, because he is not able to take the pills on his own any longer. Gilly requires intense supervision while he ingests his medication, and she feels this is unnecessary. She predicts that I should stop giving him pills altogether in the near future; he will receive medication by injection. She put in what they call a butterfly so that anyone (including me) can give him an injection without having to pierce his skin. It felt like another big step along a rocky path. He didn’t flinch or even awaken as she installed the butterfly.

Late this afternoon we heard a huge bang just before the lights went out. There were about 8 houses on the street without power. We were rather shocked by the way it all happened, but Tamara is very resourceful; she had candles all over the place before I could blink. We realized it would be challenging to handle the situation (for instance, we wouldn’t be able to lower the head section of his hospital bed because it runs by electricity) but knew we’d make the best of it. I had smoked turkey pea soup bubbling on the stove with newly formed dumplings (one of Tamara’s favourites) so we were able to have a warm, nourishing dinner of the comfort food variety.

Tamara tried to feed her father, but he ate very little. He slept deeply with a tantalizing bowl of pineapple set before him, which is a rare event. She followed Josee-Marie’s guidelines; never feed him when his eyes are closed. If he opens his mouth at the touch of the spoon on his lips, it is not necessarily hunger; it is a reflex. We both made a valiant effort, but he was not up to eating most of his dinner. I crushed the medication and he took the whole kit and caboodle in one fell swoop. I suppose I should have done this long ago, but I resist change because it is frightening.

Josee-Marie left strict instructions to inject Gilly with appropriate medication at the slightest sign of discomfort or if he becomes very agitated (the medications are labeled accordingly). She advised me not to wait; inject first and then call the nurse. I’m not confident that I have the guts to do this without consultation, particularly in the case of agitation; I haven’t seen anything dramatic yet, so perhaps I would recognize it if I see it. For pain I wouldn’t hesitate, but so far he has not had any, and it is not expected that he will. I don’t recall ever promising to inject Gilly in my marriage vows.

The power was restored a short while ago. Its time to have a nap while the going is good.

Mucha adieu about nothing; 2006 is a blur

2006-12-31T10:26:00.000-05:00

Our Internet was down last night so I did not manage to post an entry. So many people from around the world have told me how much they rely on the information I provide, so I hope my unexpected failure to launch last night’s news did not cause undue concern.

Patty arrived yesterday just ahead of schedule. Brad described the care giver who was supposed to come, and Patty was not who I was expecting, so there was probably some sort of a switch that even Brad is unaware of. I appreciated her assistance, but sighed internally at the need to go over the vital information once again as to how to provide Gilly with the care is is accustomed to and needs. She was very nice and accommodating, but clearly not of the same caliber as Raquel. But if she is reliable and willing to be guided, I suppose I could be better off. It’s hard to know and very disconcerting. I was never all that great with change, but I’ve had a high dose of it this past year, and so I have no choice but to learn to float in the direction of the current. Otherwise, I will surely drown. I’m lucky to have assistance of any kind.

I left her an hour and a half later in the throws of giving Gilly breakfast because my chariot was awaiting my presence. Susie insisted upon chauffeuring me to my massage appointment. My brother Fred, his friend Debbie and the kids gave me a gift certificate to a spa for my birthday (a few others had the same idea). I had never had a massage before; not my thing, or so I thought. I knew it would be foolhardy to wait for any further tension to develop, so I made the arrangement with an open mind and told myself that it would be just like chicken soup; how could it hurt? Yaron remained with Patty to oversee the situation and take the baton over in ½ hour’s time.

The massage was delicious. The masseuse explained that she gave me a combination of different types, because there was obvious tension everywhere. I wonder why? I topped the outing off with Tina at Second Cup. My sister-in-love, Susie (yes, mom, Uncle Leo coined the phrase) joined us for awhile and then escorted me home. On the way back I could feel the tension rebuilding itself. I wondered if the hour had been all for naught.

Yaron and I passed each other as if there was a turnstile in the vestibule and I immediately returned to my everyday reality. Gilly’s room was just as I had left it (in disarray), his dishes were in the sink; not how Raquel would have left the scene for me to return to. It is unfair of me to compare, but compare I did as I surveyed the scene. I rolled up my sleeves and dove right in until Gilly awakened.

He ate substantially, but vacillated between feeding himself and snoozing on the job. I offered to feed him, wondering if he was too weak to eat himself and he accepted. I find this painful to accept from such a fiercely independent and capable human being, but apparently he has the desire to eat, and so I offer all the nourishment he is willing to accept, one way or the other. He eats foods he used to turn his nose up at, such as meatballs and potato knishes.

He is unquestionably hungry, and so when we’re alone, we dine together in silence. I try to keep up a one way conversation, but it is strange and feels unnatural, so I ask if he wants to listen to some music, which he always agrees to. I sing along to our favourite tunes, but he doesn’t laugh at my incorrect lyrics anymore. Instead of CCR’s “There’s a bad moon on the rise” I used to belt out, “there’s a bathroom on the right,” because that is what I understood; he used to roll in amusement at my mistaken interpretation.

He fell into a deep sleep at 6:00 P.M. Rosanne dropped by to keep me company, and so my Saturday night livened up. I had other offers to fall back on (how fortunate I am to have so many who care so much), but a quiet chat was just the ticket. I was able to fall asleep at aroud 10:30 for a couple of hours before my busy mind took hold of my consciousness and forced me into unsettled wakefulness. I believe my massage was the drug that allowed me the rest I so desperately needed. I better watch out, because I hear that drug is highly addictive.

Gilly is still sleeping at the moment. I check on him frequently; he energetically throws all 3 blankets I try to keep him covered with all over the bed and sometimes onto the floor, so I rearrange the bedding and his position every ½ hour or so during my waking hours (which stretch almost as long as his sleeping ones). He was never a restless sleeper before, but I suppose he has to get expend some energy sometime, somewhere. It is hard to imagine Gilly sleeping all the time and not even being able to stand up on his own, but that is the stark reality of his life right now.

Our good friends are planning to usher in the New Year wit us here at home this evening. Each milestone we pass together feels like a bonus, and gushes with significance. We'll raise our glasses to Gilly and his valliant struggle through 2006. He is not one to balk at any challenge in his path. I reminded him of last year, when he called from Africa to wish me a Happy new Year; at least we're together this year.

Daddy's little girl

2006-12-29T17:24:00.000-05:00

It is 5:15 P.M. and Gilly has spent about 10 minutes so far today with his eyes open; how distressing.

Raquel called at 10:40 to say she would not be in for her 11:00 shift. Later, I discovered that she plans to start a new job on Monday, so the ball was thrown back into Brad’s court. In the end, she came for two hours, which allowed me some time to take a desperately needed walk outdoors in the sunshine; it was a crisp winter day and I cherished every moment of the walk and talk with Randee.

Brad arranged for someone new through a different company and she will begin tomorrow. If I enjoy the Saturday help (which I have resisted until now) I can have it every weekend. The new care giver’s name escapes me. I try not to get too attached for obvious reasons.

Isabelle came to bathe Gilly today, but he could not be awakened, so we washed him in his bed. She spent a great deal of time with me; she took the time to be thorough in a humanistic sort of way. Gilly was her last patient for the day, so she sat with me for awhile and wrote out her report over a cup of coffee and some delectable leftovers. When a care giver is kind and gentle (as most of them have been) they remind me of guardian angels (not in a religious sense, but somehow spiritually).

Family will begin to arrive very soon; I better remove prepared dishes from the freezer so they have a chance to thaw. I hope Gilly will open his eyes soon. I checked, and he is still responsive, but just can’t seem to open his eyes. He must be very weary. I know I am. I look forward to the house brightening up with smiles and voices in about an hour or so.

Tamara and Max just arrived, and Daddy's little girl manged to do what I've been working on all day long; he opened his eyes and smiled upon her.

Escape from reality

2006-12-28T18:25:00.000-05:00

I seem to be defying Murphy’s Law; over the past few weeks, my car, vacuum cleaner, washing machine and television sort of blew and had to be fixed or replaced. Then there were some minor inconveniences, like lamps shedding their light on an intermittent basis, appliances that simply needed new batteries, although I jumped to conclusions…nothing serious but annoying (in an exaggerated way) because it was just one thing after another and my life is so different now. I will have to pay attention to all sorts of ‘home’ details that I never gave a second thought to beforehand. I was dependent on a handyman extraordinaire, but Gilly is no longer able to even express the wealth of information that is trapped inside of him. Today, the sound coming from my furnace was more than just worrisome. Luckily, Daniel drove in with Uncle Butch from Ottawa this morning, and he specializes in heating systems. He was able to diagnose the problem in an instant, and managed to have the repair person show up with detailed information in his pocket so as to solve the problem without delay.

Gilly slept soundly from early last evening to about 1:00 this afternoon. Raquel and I jostled him about for awhile to awaken him so he would take his meds with food, and of course to allow him the chance to enjoy the company who came from afar to see him. He took pleasure in the visit (listened intently to Uncle Butch’s stories) and enjoyed the food. Cathy’s dark chocolate covered meesh meesheem (apricots) were a hit.

Daniel came by and joined the party (Raquel had already made herself at home in a warm, friendly yet respectful way, joining us at the table and helping to serve and clean up). I mentioned how difficult it is to turn Gilly from side to side, especially to the side he doesn’t like to sleep on. This is essential, so that he doesn’t develop bed sores, but back breaking when I have to do it alone. Daniel asked if my son would lie down so tat he could demonstrate, but Yaron was having breakfast (yes, at 2:00!). I turned to my nephew Noam and requested his services. He is quite an actor (and I mean this as a genuine compliment) and took his part seriously. He was able to simply lie there as dead weight. For a 13 year old, he’s extremely tall, so the feat was much more challenging thatn if it were to be Gilly laying there. Daniel demonstrated and then had me try his techniques. Presto! Noam rolled over with ease. I’ll have to try it tonight when it’s the real deal, but I suspect I learned some valuable tricks of the trade today.

Daniel mentioned to me that Josee-Marie would like to send a preposee to remain with Gilly one full night a week to allow me to sleep without the need to get up and turn Gilly. She found me to be too exhausted yesterday and is worried about my health. I found her offer to be sweet and kind, and I accepted gratefully. This ought to start next week; I seem to remember something about the 8th of January, but I’ll have more details on Monday when I see her.

Gilly had his shower and returned to his guests, having fallen fast asleep. We sat and talked the afternoon away next to him in the living room.

Tomorrow it is Cathy’s turn to look in on Gilly (the CLSC nurse), and Isabelle will replace Daniel because he has a five day New Year’s holiday. Raquel is scheduled to be here too, so I may step out in broad daylight for a walk with Randee. Here’s hoping it will pan out.

Yaron and Aaron just dropped by to free me up for a movie. Joey, Susie and Noam will be my dates. I know it seems as if I’m seeing many movies; well, there’s nothing like some good, wholesome escape from reality.

Mr. Fix-it

2006-12-27T21:54:00.000-05:00

It was a long night; Gilly slept peacefully and I saw to his comfort with some help from Yaron. It was an unusually difficult night; some nights just work out this way. I was unable to function during the day due to intense fatigue; I don’t think I slept a wink all night. Luckily Raquel was here, and so I took to my bed for a couple of hours. Every part of my body was able to sleep, except my mind. I felt as heavy as a boulder, unable to move, but my thoughts refused to allow me any peace. The ‘lie down’ did me some good regardless. I plan to try to lie down at least once every day, and perhaps I will eventually learn to fall asleep.

John, Stacey, Kyle and Justin drove in from the country this afternoon to bring us dinner and good cheer. John managed to solve many of my pressing problems; he fixed my washing machine (MOST important), my living room lamp (important) and my DVD player (of least importance, but still annoying). There’s nothing like having someone around the house that knows how to use tools and is motivated to use them for the greater good. A zillion thanks to my cousin (who I actually consider my youngest brother).

Yaron, Tamara and Max came by for dinner too. What a pleasure for me to have such lively conversation around the dinner table. Gilly ate some of Auntie Ruth scrumptious brisket before the rest of us sat down to eat. He snoozed in his chair as we indulged in Stacey’s delicious lasagna.

He’s tucked in for the night now that everyone has gone home. Tamara helped me place him in bed and prepare him for sleep; he needs to be propped in certain ways and to be creamed, all so as to avoid pressure points and prevent bed sores. I hope to have a lighter care giving load tonight. Perhaps Tamara’s loving touch will make the difference.

Gilly slept deeply all day long. He awoke twice for some food, but ate less than usual. He was lethargic, but managed to respond to each one of his guests regardless.

Tomorrow Cathy, Uncle Butch and Daniel plan to drive in to see us from Ottawa. I’d say the holiday is shaping up. It isn’t easy accepting a winter vacation in the city after spending every other one in my life, pretty much, up in the country. Delightful company makes all the difference. I believe that Gilly senses and enjoys everyone’s presence even though he sleeps though most of the time our friends and family spend with us.

The colour purple

2006-12-26T23:13:00.000-05:00

We spent a peaceful night and a quiet day together at home; pretty much just the two of us. Raquel did show up for 3 hours, and I so I finished grading late assignments and posted grades for my courses while Gilly was being cared for. I felt sort of queasy all day; probably from all the rich food I ate over the long weekend. I rested on the couch and read next semester’s textbook all afternoon.

Gilly was rather wakeful today. He was up at 9:00, and did his share of eating all morning long. He slept the afternoon away in his chair, woke for dinner and returned to bed in the early evening.

Raquel called me into the living room this morning to show me Gilly’s right foot. His toes were totally purple on the bottom. I found it awfully strange, and hoped I hadn’t injured him somehow without noticing it. His right foot does not move unless I move it for him, so it often gets tangled up with his left when he is being transferred. It’s hard to bend down to reposition his leg while holding him in a standing position, because he could fall very easily. Raquel rubbed some cream on the purple area and his foot returned to its normal colour. I mentioned this to Daniel when he came to bathe Gilly later one and he said that most of his patients have purple feet in the morning, and with a little cream application it goes away. He admitted that it’s normal, but really very abnormal. I assume it has to do with circulation. I will mention this to Josee-Marie when she comes tomorrow morning to make certain that there is nothing I can do to prevent this from occurring.

Yaron stayed home to allow me some time out with Joey and Susie. We saw a fabulous movie (The Pursuit of Happyness) and then went for coffee with their friends. My evenings out are guilt-free; Gilly sleeps regardless, so he does not feel abandoned, and I have some much needed escape. It always feels bizarre to move out into the real world these days. I continually look around as if I’m an alien from another planet.

Being off of work really isolates me from everyday life. I’m not complaining, though. I am free to spend all the time I wish (which is a great deal) staring at Gilly while he naps. I can’t seem to get enough of that, yet it’s too much, which is why evening outings rejuvenate me as much as they do.

I would give anything to have a window into Gilly’s thoughts. He’s less and less communicative everyday. He rarely emits any sound whatsoever, except in response to people on the telephone. It is such a quiet response that the person on the other end hardly hears it, and does not have the facial cues to testify that he is truly responding expressively. This is extremely difficult for loved ones in far off places.

Nothing like good friends

2006-12-25T22:44:00.000-05:00

It was a great movie. I know, because I napped through certain parts. I can only fall asleep to excellent programming. Randee pampered me all day long yesterday and I enjoyed every minute. The night passed without incident. Gilly slept deeply for the first time in two nights.

Today it was Ellyn’s turn to spend the day. She arrived just after Josee-Marie, and witnessed her genuine kindness and dedication to her work. She thanked Josee-Marie, explaining that she lives so far away, and feels comforted knowing that we are being well taken care of.

Josee-Marie asked that I call the pharmacy to have them deliver the special medication prescribed last week to have here on hand in case we need it. I realize that it’s a good idea to be prepared for every eventuality, but this step feels awfully dramatic.

Josee-Marie was here when Raquel called to say that the CLSC does not offer service on Christmas day. I was surprised to receive a call only ½ hour before her impending arrival. She assured me when she left on Friday that even though it’s Christmas, she still plans to work on Monday. I reminded her of that, and wondered our loud why the CLSC never alerted me to the fact that she would not be coming. She agreed that it is a strange way to operate, and informed me that she was told on Sunday evening (Christmas Eve) not to go to my house on Monday. Josee-Marie was noticeably annoyed at the news and the manner in which it was transmitted, and promised to increase the services from D’Entraide. Gilly will be bathed 5 days a week and a volunteer will be provided for 6 hours a week. She will come 3 times a week and plans to arrange for a nurse every other day. She checked Gilly out and left me to visit with Elly.

Gilly was exceptionally tired today. He had breakfast at 1:00, went back to sleep for a few hours. He awoke for a snack when Marvin, Sharon and Rosanne arrived and drifted back to sleep for a few more hours before a short third awakening to have dinner. He has a good appetite, but absolutely no energy. He is still responsive to the presence of people and to voices on the telephone.

Night moves

2006-12-24T18:32:00.000-05:00

The weekend was a blast; lots of friends and family gathered to help mark my 50th; a milestone that will be forever etched in my memory, due to our family circumstance. Tamara pulled together a wonderful impromptu party with the help of many. I couldn’t have had a nicer day, considering our circumstance.

Gilly rose to the occasion; I believe he knew it was my special day. He was more wakeful all weekend long, especially in the middle of the night! I felt guilty for simply checking on him and going back to sleep, knowing he was awake and I suppose alert, although it’s difficult to be certain since he doesn’t express himself much at all. I have to try to remain on a somewhat normal schedule, so I do not want to start serving meals and chatting away ‘at’ Gilly in the middle of the night, but I sense that he may feel lonely when all is so quiet and dark in the house. Tamara slept over last night and felt exactly the same way as I. We instinctively checked on him at alternating hours, never bumping into one another. He was never alone for long.

He’s making up for missed sleep right now. It’s 6:30 and he’s already tucked in for the night. His son is on night duty and I’m off to a movie with Randee. It’s been days since I’ve been out of the house.

Union rules

2006-12-22T18:19:00.000-05:00

Nothing much happened today. Gilly opened his eyes at about 9:00 a.m. and I took the opportunity to provide him with an earlier than usual breakfast. He slept the rest of the day away. The caregiver was here, and she couldn’t believe how soundly he was sleeping. We decided he’d be most comfortable in bed with his head elevated. The new preposee came by for Gilly’s shower, but it was impossible to wake him, so he had a sponge bath instead.

Finally, he awakened at 4:30. He’s munching on some lunch / dinner right now (don’t really know what to call it; due to increased number of sleeping hours, he’s down to 2 meals now). He keeps nodding off, so I may take him back to bed if he doesn’t liven up a bit. He continues to nibble on the food in front of him, but when his eyes close, I do not encourage him to continue eating. He must be hungry, because, cyclically, he reopens his eyes, eats some more and falls back asleep.

Yaron will stay home with Gilly this evening while I go out to celebrate Susie’s birthday. For one day every year, as Noam, realized, we are actually the same age!

I plan to take the day off tomorrow, so do not be concerned if you do not find a posting for Saturday. Union rules, you understand, don’t you?

2006-12-21T20:37:00.000-05:00

Today’s schedule was much more relaxing. I awoke from my nap early and got straight to work; my night’s sleep consists of a series of naps. I managed to accomplish a great deal before Raquel arrived. Josee-Marie showed up soon after and we had a long session together. She is truly my savior; she is one of the kindest, wisest women on the earth. She answered all of my questions in great depth and assured me over and over again that I am doing all the right things.

I admitted that I feel responsible for the bed sore on his ankle, but she explained that it is very tiny and easy to fix. She bandaged it up and promised it would disappear by next week. She adjusted the entire medication schedule so I would not have to feed Gilly in his sleep. He really does eat an awful lot when he’s awake, so he is well nourished. She called the pharmacy and checked on her instructions to ensure they were safe.

After examining Gilly for congestion she determined that he is completely clear and the sound of his breathing is normal under the circumstances. She agreed that he should sleep in a slightly elevated position and went on to recommend that I place him on his side, and turn him every few hours. She insisted that I get more sleep and that I not concern myself with waiting exactly two hours to turn him during the night, but that I do the best I can. She was very firm about this instruction and warned me that although I promised to listen to her, she doubts I will. She emphasized how important it is to sleep. I cannot disagree, but my mind says otherwise when I get into bed.

She made a call to Francine Venne, the palliative care nurse, Dr. Lapointe’s angel, and asked her to have Dr. Lapointe order medication from one of 3 special pharmacies. At first, when I heard who she asked to speak to, I panicked, thinking she was going to order Gilly’s admittance to hospital. She picked up on my worried expression and assured me that it is my choice; I determine when the situation is not manageable. She explained that she called francine Venne to request the prescription for medication that could be administered by injection. It is complicated to get a doctor to prescribe exactly what she may need over the holidays. She said that there are 3 types of injections that Gilly may require; one for pain, one to treat congestion and another to keep him calm (she couldn’t provide the correct translation for the third one, but this is what I understood from her description), all of course only if necessary.

She looked deeply into my eyes and gently asked if I still feel comfortable handling the situation at home. I immediately answered affirmatively, but questioned if she believes he is safe. I went on to share how I feel; as long as he seems to know and appreciate his surroundings, and responds positively to people, he would probably be best in our home where we can provide a warm and loving atmosphere 24 / 7. When it is not longer safe or in his best interest to be here, then we will have to consider an alternative. She reminded me that he has a bed waiting for him at Mount Sinai. I gulped, containing the wail that wanted to be released from my body, and informed her that we have not yet heard from them; Dr. Lapointe had mentioned that they would contact us to arrange pre-admission. She assured me that she has documents that state that he has been assigned a bed there already. I couldn’t hold myself back any longer. I apologized and took a moment to express my sadness openly. She understood and left me be for a moment to check on Gilly, then returned and asked me if I was O.K.

I questioned her as to what she would do in my situation. She guaranteed me that Gilly is safe in our home. She understands my decision, and plans to arrange for more coverage. She expects to have a nurse come in 7 days a week pretty soon and strongly advised me not to hesitate to call the office at any time to ask questions. She will also arrange for the preposee to visit more than 3 times a week. All this will kick in after the weekend, due to the holiday. She assured me that I can have a nurse come to the house at the drop of a hat if I feel the need, no matter what day or time and not to hold back just because it is holiday time. She promised to change her schedule for the following week to prevent overlap with the CLSC nurse, Cathy. We parted ways, yet I still feel her support from afar.

Raquel has very little to do since Gilly sleeps so much, so she does some odd tasks around the house and provides comforting encouragement to me while she waits and allows him his rest. I sometimes feel that setting certain hours for any long term period is arbitrary, and it doesn’t always coincide with the actual ‘major muscle moments’ when I require help. It’s impossible to parachute care givers in and out whenever I need them, but I can dream, can’t I? She’s a pleasure to have around regardless, so I’ll take what I’m given and say thanks to the medical system.

Nadette dropped by this afternoon (see photo above). She is an old friend who moved to the states and was in town for the day. We were both delighted to see her. Gilly munched on the delicious candy she presented to him; I haven’t seen him eat that much candy ever before. He savoured every bite and remained awake and alert for the entire hour or so that she spent with us.

Gilly had a nap and then a huge dinner before drifting back to sleep. Tamara came by with Leora, so I was saved the job of transferring Gilly back to bed. He’s tucked in and sleeping peacefully with apparent contentment, so I’m off to bed. He’ll need to be turned in a few hours (I wish we had a device like a rotisserie), but by then I may have Yaron home to assist me.

Much ado in a day

2006-12-20T21:35:00.000-05:00

Today was a busy one. I woke up early to get some reports completed and worked steadily until Michelle arrived to clean my house. Thank you Sheryl!!! What a treasure. My house has never been so clean. You may need sun glasses next time you come over!

Next, Raquel showed up. I asked for an extra hour today (usually I get only 2 on Wednesdays) in lieu of Monday’s missed hours. My plan was to get to Vanier before my meeting to accomplish sundry tasks.

I went over the long list of questions I wanted Raquel to ask of Cathy, the CLSC nurse who was scheduled to show up sometime in the morning (I had hoped prior to 10:00 but that was not to be). After providing necessary materials and details to Michelle I dashed out the door. Raquel called out to me noticing I had not eaten breakfast, but I had to dash, so I promised to grab something at Vanier.

I passed the piano tuner on my way down the front stairs and called out to Michelle to direct him to the piano. I plan to sing my birthday away with friends this week; Randee needs a tuned instrument to accompany me. Thanks Randee! I simply can’t wait to join you in song as you tickle the ivories.

Of course I realized along the way that the college cafeteria would not be open now that the students are finished classes for the term. I knew I had to proceed, because so much was on my plate (all but food, I thought, but I was mistaken). I am not in anyway starving myself; in fact, I have stored more calories than I need, especially since the onset of the 8 day latke fest. It’s just the erratic eating habits that cause a problem. That’s my life right now, so my body will just have to adjust.

I zipped from the parking lot to my office and back a few times to unload graded material. I zoomed here and there to check all sorts of ‘to do’s’ off my list, then landed up in Cathy and Judy’s office out of breath. Both these angels came prepared for the meeting with lunch and snack…man, am I ever lucky to have these two ladies at my side. I was all business, because I needed to return home in time for Raquel to leave. Too bad I had to rush through our rendez-vous. They painted such a warm and welcoming backdrop to my otherwise crazy day.

I noticed the Dean wandering the halls on my way to gather my papers from my office for departure. I stopped to have a chat with him. The lady at Human Resources suggested I bring him up to date on my circumstances so that he would be aware of my potential absence at some point down the line. He is a fine gentleman, and showed genuine compassion for my situation (not the first time, either). He offered some sound advice and I left feeling secure that my loose ends are tightening up.

I tried to reach my house repeatedly, but no one answered the phone; not Michelle, not Raquel, not Yaron and of course not Gilly. I forgot to mention to Raquel and Michelle what they should do when the phone rigs; they are both highly respectful, asnd so wouldn't answer unless instructed to do so. My mistake; too much to coordinate! I wanted to let Raquel know that she could leave Gilly in Yaron’s hands because I was running a few minutes late due to my unscheduled visit to the Dean’s office, but to no avail. I couldn’t believe how wound up I was about the impending 10 minute overlap, considering Raquel missed her 3 hour block two days earlier, but that’s me. Finally, Raquel got the message that there was a persistent caller and picked up (which was really to her advantage).

I sent Yaron off to shop as soon as I made it home and greeted my sleeping husband, dressed and ready in his chair for Daniel to bathe him. Daniel wandered in not long after and I continued doing my work while he performed his magic. What a treat for me.

Jerry stopped by and then Dave and Barb. Gilly slept through Jerry’s visit, but awoke to spend some time with Dave and Barb. He actually ate a piece of the cake they brought over (see what I mean about no shortage of calories?). He started to fade at around 5:30, so they took their leave and I went back to work until Yaron arrived to help me put sleeping Gilly back to bed.

He’s now tucked in for the night. I will turn him every two hours to prevent bed sores and raise his head if he seems congested. The nurse left me a note saying that if Gilly is beginning to sleep through the dinner hour I could double the medication dose at lunch. He had breakfast at around 11:00 and then lunch at about 5:00 with a snack in between today. I decided to double the lunch pills. If he becomes wakeful, I’ll offer ore food, but I think that it is best not to feed a sleeping man.

He is unquestionably sleepy, but still responds to people when awake, especially those he seems surprised to see; special guests I guess you’d call them. He holds up his fist to give Yaron props and still manages to pucker up for a kiss, but his overall demeanor is low key. His wakeful periods are short lived, but pleasant more often than not; I love to be around him when his eyes are open and he responds. He does not seem to be in any pain or discomfort, and for this I am so very grateful.

2006-12-19T23:01:00.000-05:00

It was bittersweet (I feel the need to use this term often lately) to see the Bernstein’s from Hamilton. We’ve shared many a milestone, not always happy ones. Their visit brought back many memories. Gilly responded positively. We spent all evening and this afternoon together. We feel so honoured that they made this special trip to spend

I’m on my way out to celebrate a happy milestone. Rosanne, you go girl! Tamara and Max will stay with Gilly while I party hearty with the ladies. Every celebratory moment is meaningful in a magnified way for me these days. Keep those good times coming!!!

God bless them all

2006-12-18T17:31:00.000-05:00

The parade was cut short; I must have jinxed myself by becoming too comfortable with the idea of help. Raquel never showed. I called Brad after an hour of waiting and left a message wondering if I had the details right. She called me ½ hour later and left a message for me (it’s hard to get to a telephone during certain care giving moments). Apparently her absence was unavoidable due to a problem with her patient and she didn’t have my number on her. It’s not an ironclad system, but I still believe she’s worth the trouble. I pray for no further mishaps. I’m working from home these days, so no harm done. Daniel was there to bathe Gilly and Josee-Marie showed up as well.

My nights should be more relaxing now that matters are organized with gizmos and gadgets at my disposal. Still, I lie awake thinking, which prevents me from sleeping. I worry about what is coming next; I mull over the little things that concern me and unsuccessfully try to avoid thinking of the more dramatic ones that lie ahead. I will have to practice relaxation techniques tonight to catch some serious shut-eye. I’d hate for my new found wakefulness to become a habit.

Gilly continues to sleep and sleep and then sleep some more. I have to rouse him in the middle of his meals. Today he ate independently. I suppose he was worn out last night from a weekend of partying, and so needed my assistance. That’s what I’m there for.

How does he look? Peaceful and cozy in his cushiony chair. He is napping as I type away, to make room in my schedule for the next group of guests.

Anita, Lenny and Nomie are here from Hamilton to spend some time with us. We haven’t seen them in many moons, so it will be a bit of a reunion. Max’s dad is coming over with a friend who specializes in communication devices to see if perhaps Gilly could benefit from yet another sort of gizmo. It doesn’t hurt to try.

I just received a call from Tamara; Yaron just picked her and Max up; our home is about to be filled with voices once again. God bless them all! (That’s my new almost 50 year old saying).

Holiday magic

2006-12-17T22:40:00.000-05:00

I hope you enjoy the photos of one of Gilly's many homemade Channukiot. It usually stands outside, but I thought it would be nice in our living room this year, so Gilly can actually see and appreciate it.

Our weekend was filled with family and friends (both old and new). Our home came to life with candles alight and Chanukah fare. I should be tired from all the extra work; just handling Gilly’s needs is more than a full time job, and we have no caregivers on the weekend (at my request). I’ll admit I am rather pooped, but it’s a good tired. I feel loved and cared for by so many. My house is rather topsy turvy, but so is my life, so it’s kind of fitting, I suppose.

Gilly sleeps more and more every day. Tonight, for the first time, he let me feed him. I don’t think he would have had the strength to eat otherwise, and he certainly appeared to have an appetite. I warmed his dinner 4 hours after he had his lunch, so as to make sure his pills spread out across the day. At 8:30 P.M.I tried to encourage him to eat Elana’s chili, but he made no move to feed himself. I offered him a spoonful and he accepted. I was taken aback. Firsts are always tough to swallow (no pun intended).

He was sitting in his wheelchair munching away when he glanced over at my friend Randee, wrapped up in a cozy blanket watching a movie with me in my room. This is my new den, now that we spend all our time on the upper level of the house. He did a double take; “What’s wrong with this picture?” his facial expression seemed to ask.

I managed to get a fair bit of my work done over the weekend. I will forever refer to this feat as this year’s Chanukah miracle. I hope to tie up all my loose Vanier ends by Wednesday, and then settle into a week of pure quality time with my beloved husband.

We deserve time together, peaceful and unencumbered. We have several milestones ahead of us; my 50th, the 25th anniversary of the day we met, and then 10 days later, the 25th anniversary of the day Gilly proposed to me (love at first sight). Yes, you guessed it; I’m sentimental, this year especially. Think of it; I’ve spent half my life loving this man.

Tomorrow, the parade of caregivers return; Raquel will arrive first, followed by Josee-Marie, and ending with Daniel. It’s comforting to have all this assistance. I enjoyed the weekend; it’s more intimate to spend time with family and friends, but I look very much forward to the return of the care giving brigade.

Let's get physical

2006-12-14T19:56:00.000-05:00

I am bleary-eyed as I compose tonight’s posting. It gets more and more difficult on a physical level to care for Gilly. He is not able to help much when being transferred, so there is a lot of weight to shuffle about, even though he is not a large person by any stretch of the imagination. Once settled into his chair or bed or whatever landing strip of the moment, I look at him and declare my love. He is beginning to glare at me rather skeptically, because he notices that I am huffing and puffing from the exertion. Now there’s a good reason to stay in shape, people!

Josee-Marie worked in her car from 7:40 to 8:00 then rang the doorbell on schedule. She checked Gilly out more thoroughly than any doctor has ever done, left more paraphernalia for me and promised to send additional materials with Danielle tomorrow (apparently we are lucky enough to have him for at least one more bathing).

Raquel arrived today ahead of schedule. I cannot praise her enough; she is of very high caliber. She knows what to do, works efficiently in a gentle sort of way, demonstrates compassion to both my husband and me, adores Liylah (she gets double points for that, because Liylah is begging for attention these days) and is neat and exceptionally organized. I especially appreciated how she showed where she placed certain materials she will need on a daily basis, so I don’t have to go looking around for things.

My sweet friend read my mind this morning; I looked out the window and noticed the sun shining and developed a strong urge to take a walk. Moments later my phone rang; Rosanne suggested that we take advantage of the day and take a brisk walk. I cleared my schedule (I was waiting for a call from Vanier) and off we went. I’m so glad I seized the opportunity to enjoy myself for an hour or so while Raquel tended to Gilly’s needs. I had no qualms whatsoever about leaving her in charge and returned to find Gilly up and dressed and sitting with Jerry and Tzilla. In the meantime Raquel took the initiative to straighten up around the house.

The latter part of the afternoon was physically strenuous, and I had to run out for some medical supplies that the nurse suggested over the telephone when she called for an update. She is certainly diligent; I feel safe with Gilly in her care.

Chatting with Susie a few moments ago, I realized that the emotional component of caring for Gilly under these circumstances is not what exhausts me anymore; it is purely the physical work involved. I may need to move on to the next stage of adaptive equipment pretty soon if I am to devote this much time to Gilly’s care over the holidays. I will discuss this matter with Danielle tomorrow. He has many excellent suggestions.

I will not write anything to add to the blog for at least two days, because my house will be on wheels all weekend, and I have to find time to attend to my work in between candle lightings. To those who celebrate Chanukah, I wish you Chag Sameach. To those who do not, I hope you enjoy your weekend to the fullest.

Gadgets and gizmos

2006-12-14T00:16:00.000-05:00

Each day I think I’ve got it all figured out and then wham, something new strikes and I’m back to square one. Luckily, the superb community health care system seems to have answers to every new obstacle.

The nurse from the CSSS showed up this morning at 10:30. I was still lounging about in my nightie, tending to Gilly when the doorbell rang. She checked him all out, offered suggestions and gadgets and insisted I turn the bed around so I could get to him from every side. I suspected that the arrangement was not right, but didn’t know how to fix it until she told me point blank that this room configuration would not work. She bid us adieu, promising to return next Wednesday.

I woke Yaron and tried to explain how to move things around (I needed his muscle), but he politely moved me aside and in two minutes was able to solve the problem. He has an amazing spatial sense, as his father once did.

The phone started to ring off the hook from that moment on. Countless calls came in, one after the other. Josee-Marie called to say she’d be in tomorrow at 8:00 (she gives an exact time and waits in her car if she’s even a moment early; this is convenient because I know exactly when to be dressed and ready to greet her).

I peered out the window of Gilly’s room as I worked on my computer and noticed a car pull up. I smiled at Gilly as snacked on fruit and informed him that Danielle, the male preposer would be entering soon to bathe him (the spell check won’t accept this word in English or French, but I was told that this is the name of the person who takes care of bathing and what not). My phone rang and sure enough it was Danielle, apologizing for being early and wondering if it would be O.K. to get started earlier. I welcomed the possibility; he said he’d be in momentarily as he had some work to attend to in his car. I know that deal; my car was my second (or should I say third) office until Yaron became licensed.

Danielle showed me many tricks for lifting and transferring Gilly. He taught me to raise the bed higher (the electronic controls were on backwards). He provided more gizmos and gadgets and taught me many new things. He went over the list of what a preposer could potentially do for us and suggested I think about adding on services. He explained that a visit usually takes 45 minutes, but if more tasks are required, the office will allow 1 ½ hours 3 times a week. Sadly, he will not be the one to come on a regular basis, because he does not cover this region normally, but the other person who will take over will also be a male. I am thrilled. I found that Gilly was more responsive to Danielle than he is to the female caregivers when they try to bathe him. I fully understand how he feels. Unfortunately, there is a severe shortage of males in this field, so we have to take what we can get.

Brad called to tell me that the caregiver (a woman named Raquel who has palliative care experience) will come tomorrow for the first time, and this will continue 5 days a week. I look forward to meeting her tomorrow and building a relationship with her. At least I will be home to get to know her this time, as opposed to running off to work with a stranger caring for my husband. I will take advantage of her being here by going out, but not tomorrow.

The day was busier than I thought it would be. Tamara came by with Max to watch over Gilly while I went out for dinner. I could tell that she noticed a huge difference in the extent to which Gilly requires care now. It is difficult to swallow.

He slept away most of the day and evening. He is not in any discomfort, or so it seems, and he seems at peace, but it is heart breaking to watch him become weaker by the day.

We continue to look forward to Shabbat dinner this week. It is the first candle lighting. We will adorn our balcony with the large hannukia Gilly made last year with large metal pipes and light bulbs. He had a habit of designing different types of menorahs over the years. Some may remember the large one he made out of ice up north one winter holiday many moons ago. I have a marvelous picture of it; he wore a grin from ear to ear, as was another of his habits.

Change of face

2006-12-12T21:28:00.000-05:00

I spent the better part of the day at home, even though Laverne was here from 8:00 to 5:00. I went for a routine physical check-up early in the morning, expecting to go to the library to complete my work for the rest of the day. I encountered a detour and my plans changed.

I decided that I should make a small order before heading to the library, since we needed juice and fruit. At the cash I was annoyed to discover that my Mastercard was not working. I left my order at the grocery store and returned home to solve the mystery. My card was duplicated, apparently and someone used it to buy gas in Florida early this morning. Little things like this send me over the edge; I remained home and took to my bed, trying hard to work, but it was not easy. The phone kept ringing and many important calls had to be attended to.

Will-Aide was one of these calls; finally, the transfer slide chair was ready to be delivered. I asked if they could pick up the equipment that we’ve outgrown at the same time, and they agreed (it’s amazing how quickly we’ve moved from one form of adaptive equipment to another as a result of the progression of the disease).

As soon as the two gentlemen saw the bathroom they asked if I really wanted them to install the pieces. I have been wondering for over a week exactly what the slide chair would look like, but I was unprepared for the reality. I asked how exactly it works. They looked at one another and admitted that it wouldn’t in this space; Gilly’s legs would be banged about and I would have great difficulty maneuvering him into the right position to slide over the tub. I had pictured a slide like you'd see in a park, and couldn't for the life of me figure out how I'd slide him back up and out when done.

We had a short discussion, and it was determined that the system would never work. They made an alternate suggestion, but unfortunately it will take days before we receive the euromode they mentioned. I’ll need a second person to help me bathe Gilly until then, or sponge baths in bed will just have to do. It’s just too difficult for me to move him from the doorway to the transfer bench on my own now that he really cannot stand anymore, let alone walk.

I was there to receive several calls from Brad as well. Finally, we managed to arranged the new caregiving hours; 11:00 to 2:00 every weekday except Wednesday (11:00 to 1:00 instead). This includes two baths offered by the CSSS, but delivered through Paraide, so as to reduce the number of people I will have to deal with.

Next, someone from the Association D’Entraide Ville-Marie called to say that someone would be here to bathe Gilly tomorrow at 2:30 (they'll come 3 times a week). I anxiously accepted the offer. Help is really on its way.

I managed to complete some of my work in between the ringing, and still found time to co-caregive with Laverne. It’s much easier as a twosome. Yaron and I work as a team during the night; he shows up just as Gilly needs attending to (I won’t mention what time that is). He awakens me as needed; this arrangement permits me to relax and fall into a deep sleep beforehand. I have always believed in the strength of collaboration; together we are better. Nights are becoming easier to manage.

Today, the change I noticed was a persistent shaking of Gilly's right leg when he is finished being moved from one place to another (wheel chair to soft cozy chair, for instance). He’s been doing this for a while, but the involuntary shaking was more pronounced today. His left hand shook a bit more than usual as well. I plan to ask the nurse about this next time she visits (on Friday at the very latest).

Gilly is now fast asleep with music playing in his room, thanks to Marvin who moved our new old sound system up to his room last Sunday. Gilly’s cousin Dave fixed our old turn table (almost 25 years old) about a month ago and we’ve been enjoying our old vinyls. When we got married and put our record collections together, we noticed that we share similar taste in music. Listening to the oldies is a pleasant way to spend time together. I look forward to more of this as my residual workload dissipates over the next few days.

I expect to go out tomorrow evening with my colleagues from Vanier. Tamara is scheduled to come over and spend time with her dad. This provides a nice balance for us all. I love to be home with Gilly, yet I need some escape from the brutal reality I face at every turn in our home. Gilly needs a change of face as well; I look very much forward to the opportunity to socialize with workmates. Time has not allowed me to do so at all this past semester.

Remembering Grandma Ida's latkes

2006-12-11T19:16:00.000-05:00

We had a warm and pleasant evening with our good friends; the weekend drew to a close on a positive yet sentimental note.

We had a visit from Josée-Marie of the Association D’Entraide Ville-Marie (similar to the Victorian Order of Nurses). She is yet another nurse who possesses a wealth of information. She explained that this association will provide someone to bathe Gilly 3 times a week (so including the CSSS, we are covered for 5 baths a week). We are entitled to 6 hours of volunteer service; someone to sit with Gilly if I have to go out or take a nap, let’s say. The nurse will visit twice a week.

She examined Gilly and found his blood pressure and pulse to be normal. She placed a medicated patch where Gilly is developing what she considers a tiny bedsore. She claims it will disappear in a few days and ‘poo-pooed’ it as nothing at all. I was relieved; I thought I had caused him pain by not caring for him properly. I try so hard to be thorough, but it is a challenge.

She feels we are set up properly, except that there is a mattress even better than the one we have that sends air through it electronically. She has ordered this for Gilly. She feels we do not need a ramp, because it is not safe for us to take him anywhere in a car, due to his inability to stand on his own. He must be transported professionally if we need to go anywhere; not an ambulance exactly, but something of this nature. She could not think of the word for the service in English, but will let me know.

She provided me with emergency numbers to call for a nurse to visit our home in case we have the need, additional to the number I already have from the CSSS for Garde Medicale.

The Jewish called to set a January 10th appointment for the swallowing test just as the nurse was leaving. I explained the situation to the secretary and admitted that we may not bother to come; we’ll need to use our own judgment and take extra care, using the package of information given to us on this topic by Christina, the nutritionist from the CNR program. It’s a good thing she chased me down last time we were at the hospital to give us this information. Now I know what to look for and how to avoid problems.

I realize that juicy fruit pieces (like watermelon and pineapple) cause coughing spells… I mentioned this to Josée-Marie, and shared my discomfort with having to take away Gilly’s greatest pleasure (food-wise) by grinding up the fruit all the time. She reminded me of the balance in terms of choices we make; quality of life is the key component in deciding what to do about a problem. I found her advice to be compassionate and wise. She suggested I try cutting the fruit up into smaller pieces, but watch to make certain he does not shovel many small pieces into his mouth at once and cause a worse problem.

Gilly spent a quiet day with Elizabeth; her last day with us. I was home for part of the time; she is undoubtedly much more interested in cleaning my house than overseeing Gilly. She left him to eat breakfast alone in his bed. I left my office and peeked in to find him fast asleep with his food tray on his lap. I called her into the room and reminded her that he should be watched while eating to ensure he doesn’t choke. I had mentioned what Josée-Marie had warned me of, but she felt my floors needed more attention than my husband. Boy, does she have her priorities in the wrong order.

I went to work this afternoon; I felt as if I was drifting on a cloud, nowhere near earth. I have a couple more visits to my office (and more grading of papers to finish than I should at this stage of the game) and then I’m done for the term. I’m tossing about the idea of taking some time off, but I haven’t made a decision as yet. As long as the situation remains on an even keel, I can work from home until the second week of January…everything feels up in the air, hence the billowy cushion I’m resting on (in limbo of sorts).

I have given up on making plans of any nature too far in advance. We’ve set our sights upon the first couple of nights of Chanukah, and we’ll improvise from that point on. I love making my version of Grandma Ida’s latkes…She used to whip me up a batch and serve me like a queen whenever I stopped in for lunch (which was often; wouldn't you?). I didn't have to wait for Chanukah.

We’ll make double sure that the weekend celebrations will be more magical than ever.

Check out Ziggy, Linda

2006-12-10T18:42:00.000-05:00

Last night (evening, actually) there were 18 for dinner (easy when you don't do the cooking); the company was wonderful. Steven, Freddie, Hisura, Joey and Susie stopped by as well. If that’s not support, I don’t know what is.

Steven and Freddie were here until the wee hours of the morning, and I didn’t avail myself of the opportunity to sleep. I find myself so overtired that I cannot relax and drift off to sleep unless there is dead silence in the house. The late night visit was well worth it. Gilly loved every moment. I live vicariously through his pleasures these days.

Gilly is lounging in his favourite chair; Steven and Joey shlepped it upstairs from the basement for him last night. His two buddies (Steven and Marvin) are sitting off to the side reminiscing; they know each other from camp; we’re really all connected.

Tamara has taken charge; she encouraged me to make a list of things that need to be done and I accepted. She and Marvin completed many things on the list this afternoon. She’s now decorating Gilly’s room with familiar images, like camels and locomotives, family photos, Hebrew signs (sorry, can’t read them) and so on.

Marvin showed me a thing or two about transporting Gilly from chair to chair, etc. He has had some experience (an old friend had an accident many years ago) and he shared some handy tricks with us today.

Freddie just arrived; there is no better Kodak moment than the one in our living room at this very moment. Bless these guys. Marvin said I ruined his reputation of being a tough guy by telling the world how tender he was with Gilly last week; these 3 men are sweet, gentle, loving friends. I will never forget these precious moments.

Food fest #2

2006-12-09T17:36:00.000-05:00

It was beautiful last night; a real collective effort, and just what the doctor ordered. We were surrounded by love and conversation, young and old, those young and in love, friends for life…a delightful evening.

Gilly’s right foot, as I mentioned yesterday is all curled up and kept slipping off the foot rest. As soon as Evan noticed, he taped a small towel around each foot rest and the problem was solved. It’s amazing what they teach them in medical school!

Actually, all accommodations and modifications required are simply a matter of using ingenuity to solve a problem. There are so many types of adaptive equipment out there; something for pretty much any sort of ‘problem’ we’ve faced. This is just like special education; there are so many potential solutions to help people with learning challenges to learn; you simply have to recognize the problem and have the desite to solve it, and the solutions are available.

We are awaiting the Friedman clan and Steven, who just called to say he’s on his way. Gilly’s day was fine. His condition didn’t change in any way overnight. Gotta go put the delicious fruit sauce (apples, pears, pomegranate and nectarine) through the foodmill. No need for sweet desserts with Chinese food.

Party girl

2006-12-08T19:22:00.000-05:00

Gilly spent yesterday afternoon and evening entertaining guests (all family) and he went to sleep without even flinching with regard to the location. He was always great at adapting to new places. I often marveled at this ability to jump off an aircraft in a far off place and make himself at home.

Tamara and Max made the switch; they moved the bed from my office (Tamara’s old room) to Gilly’s new sleeping quarters. This allows me the chance to spend time with Gilly there as his time in bed gradually escalates. I spent the morning there with him as he had his breakfast and wet back to sleep. I slept in my own bed during the night because I needed that comfort very badly.

I went off to a Chrismikah party last night as the furniture was shifted. It was great to see the LDAQ gang again. I haven’t volunteered since February, but I still manage to get to the parties. I guess I’m just a party girl.

Gilly’s ability to stand has worsened today. We landed up huddled together on the floor in the living room as I tried to guide him to the easy chair and he simply couldn’t hold his weight at all. It was a slow slumping of bodies, so neither one of us was hurt, but my back tells me that getting him up and on that chair was more than my back could handle. I will have to minimize the transfers of this nature myself.

Brad called and suggested I spread out the 14 hours of CSSS home care (which begins next week) to help me at key points in the day, everyday, even on weekends. I promised to think about what would be the best schedule and inform him on Monday. After the slumping incident, I realized that I need some instruction on proper lifting; I must take all the help I can get in this regard, so as not to end up immobile. That would not be smart; not ever, but especially not now. Yaron is strong, and so when he’s home, he will make the transfers (as he successfully did a few moments ago).

His right leg is very stiff today and his foot is curled up. I cannot even get it to rest on the foot rest (now that we finally acquired one; ironic, isn’t it?). He slips down to almost a lying position when in the armchair now. He cannot sit on regular furniture anymore without some support (and I have no idea what that would be). He is safest in bed or in the wheel chair at this point.

It’s heart wrenching to watch the slow progression in a downward direction. Luckily, his spirits are still up, his appetite is still there and he enjoys having people visit and speak to him over the phone (albeit one-sided). His facial reactions tell me that he understands what we say, and he continues to grab me for a hug when I lean over him to adjust the brake on his wheel chair. I sense that he is more ‘with it’ these days than he has been of late. We are enjoying our time together.

We’ll be 12 for Shabbat dinner. It’s a pot luck effort of the very finest; Tamara’s shopping and preparation, my taking out frozen leftovers to warm and Debbie’s spaghetti sauce. Auntie Ruth just arrived, so it’s time to sign off and enjoy the company.

Love you forever

2006-12-07T07:44:00.000-05:00

Gilly balked at the idea of getting into his new bed. I asked him to look at me, and explained the reasons. He quickly changed his mind and accepted the new arrangement. His sudden change of heart provides me with more evidence of the fact that he is well aware of what is going on. He is unable to follow complex details, but he basically knows what is happening to him (more so over the past week or so, interestingly enough) and in his heart of hearts, he wants to make the situation easier for me. He is one of the most unselfish people I know, and this trait continues to shine through at this most difficult time. He’s had to give up so much, and the demands continue. A few weeks ago, I would not have believed that he had anything left to give up, but I was mistaken.

I prepared his nest in the as cozy a way as possible and offered to remain in the room. He sent me off on my way. I lay in bed and listened. I didn’t think he’d attempt to climb out, because on a physical level, he’s not prepared to fight that way any longer, but I wouldn’t put it past him to use the last spurt of gumption and try to escape. It would have been a long way down and a hard landing, so listened intently for any sign of movement. I went in to check on him every 20 minutes or so, and he lay awake, eyes wide open (which was highly unusual; he normally falls into a deep sleep as soon as his head hits the pillow). I’m sure he was thinking of his plight, but refused to show any sign of emotion. I asked repeatedly if he wanted me to stay and he never wavered in his refusal to admit any need for company.

Yaron arrived home from hockey and went into to say goodnight to his dad. He whispered, “I love you daddy.” There was no verbal response. “Do you love me?” he asked pointedly. “Yes,” he answered. “Say it daddy. Say you love me,” he begged. He put the words out for Gilly to copy, “Say I love you.” Silence.

Yaron arrived at my bedside crushed. I go through this whole ritual with Gilly regularly, so I fully understood his intense disappointment. “He tried,” Yaron revealed, “but he just couldn’t do it.” We wept together for quite some time while his friends waited for him downstairs. I rarely allow myself these moments, because they rip me apart, but it was impossible to hold back. We share so much love for this man.

I reminded Yaron of when he was a small boy and cried softly and persistently one day in the back seat of the car. I tried to find out what was bothering him, but he wouldn’t share the reason, until finally he announced, “I miss my daddy.” Gilly used to travel a great deal for business, and his son quietly, painfully mourned his absence. From that moment on I understood how desperately he needed his father’s physical presence in his life. We all missed Gilly, but Yaron yearned for his dad in a different way. Gilly was tough on his boy, but Yaron knew that his love and devotion was steadfast. He could count on his dad to love him and guide him in a special father and son sort of way. Now the tables are turning; Gilly awaits his son’s presence at his side as he remains at home, day after day. His eyes light up when his son enters his space, and his fist rises to receive ‘props’. I wish I had thought to tape Gilly telling us how much he loves us, but our memories run deep and for this we are grateful. I luckily have my wedding video where he declares his love as part of the ceremony; he has lovingly kept his vows in every way.

I tried to offer solace in the only way I could think of; I pointed out how lucky the four of us are in that we have an intact family; we’ve loved each other deeply from day 1, and continue to do so. We really have strong bonds to one another. We as a couple have remained together from the day we met (25 years ago this January); our love has only grown for one another over the years. Yaron and Tamara are fortunate to be children of such a loving marriage and partnership.

We shared a long hug and tight squeeze, and Yaron went off to join his friends. He and Tamara will spend time at the CSSS with Brad this afternoon. Tamara made the request, really for the two of us, but we all agree that Yaron is ready to speak of his feelings, and the timing of this appointment is just right in an uncanny sort of way (I’m writing this portion of the posting at 7:30 a.m. when I should be getting dressed to go to supervise my students, but I have a need to express my thoughts and feelings so here I am at the computer).

Gilly fell into his usual deep sleep by about 2:00 A.M. He’s resting very peacefully right now. I will offer a kiss and a promise of speedy return from work in a few moments.

Strange bedfellows

2006-12-06T21:15:00.000-05:00

My lack of sleep is draining me, but I do see the light at the end of this week’s tunnel. The hospital bed arrived this afternoon. It is a relief to have this convenient, almost necessary piece of equipment at home, all set up, but I sense resistance on Gilly’s part. Who would blame him?

In speaking with Sema this afternoon, she alerted me to what I like to call a gadget (since she loves to collect gadgets). She mentioned that I should get an egg crate foam liner for the bed to prevent bed sores. I immediately called the O.T. to ask where I could get such a thing, and she directed me to Walmart. Yaron, by coincidence was shopping there for me at that very moment, so I called him and had him pick one up. The O.T. ordered a special mattress designed to prevent bed sores in the meantime.

Later on, while speaking to Jerry, I discovered that such a mattress was probably available. What seemed like moments later, Cynthia and Aviyam arrived with a state of the art special mattress. Solutions appear at my doorstep without even being requested. The foam liner is not necessary any longer; I will try to return it tomorrow. Walmart is great about accepting returns, even when packages have been opened (I had already laid it out on the bed).

The delivery men (from Will-Aide; the CSSS orders equipment from them) arrived with the bed, as I mentioned and a chair. The nurse had mentioned a special transfer chair, so that is what I expected, to transfer Gilly from the chair to the transfer bench. Instead, it was a transport wheel chair, identical to the one I rented from the local pharmacy, this time with foot support! I sent Yaron off to return the rented transport wheel chair (why pay a rental fee now that I have one in hand), but I still wanted to understand what was going on. The men said I’d need to call Will-Aide; they do not deal with mistakes. I called and explained that I was supposed to receive the transfer chair, and I was told to call the CSSS because the mistake is on their end. I finally heard from the O.T., only to discover that Will-Aide is out of transfer chairs, and she knew I needed the transport chair, so she went ahead and requested it, now that they had one in complete with foot support. Well, that explained what I thought was a mistake.

In speaking with her further, I discovered that the transfer chair we await delivery of has a slide that will transport Gilly directly into the tub, as opposed to transferring him to the transfer bench. I cannot picture exactly how this new device will operate, but I’m sure it will be useful. Moving Gilly from the wheel chair, parked at the doorway of the bathroom, over to the transfer bench set up across the bathtub is a little bit tricky. It’s only a couple of feet, I suppose, but he cannot really walk, nor hold himself up, so it is a challenge. For now, we’ll make do with what we’ve got.

Gilly is resisting the idea of getting into that hospital bed, and I’m plum tuckered out, so I may not wait out his change of heart this evening. The transition may take some getting used to for us both. Tomorrow I will have a bed set up in the same room so I can sleep in there and keep him company for portions of the night, as long as he seems to need this support. We’ll make it as cozy and warm as possible, and hopefully he will enjoy the perks. I know I will find care giving a whole lot easier once he is firmly ensconced in his new digs. It is the end of an era, though, and hard for us both to swallow.

I completed my last day of teaching today, and tomorrow I will conduct my final observations in the field. It will be easier to work out my schedule, because I can do the large majority of work from home. I will use Elizabeth’s services for at least 1/3 of the time she usually comes in for next week, and see how it goes with me as primary caregiver, supported by Tamara and Yaron, whose schedules free up at about the same time (Yaron’s completely and Tamara’s partially). He deserves to be cared for by loved ones as much as possible. The 14 hours of CSSS care will help enormously…we’ll take one day at a time, as they say.

Just a few words

2006-12-05T21:52:00.000-05:00

I’ll need to be brief this evening, because I just arrived home (9:40 P.M.) and left the house this morning at 7:45. It was a long day and I’m more than exhausted.

No change that I notice today, but then again I was gone all day. He and Yaron are tucked into our bed watching T.V. Yaron brought him downstairs this evening to spend time with the boys. I asked him to bring him up before he leaves because it is not possible for me to accomplish this on my own. It’s the changing of the guards.

I called home at lunch and spoke to Laverne. She is saddened by the change she sees in him. She’s a better judge than I, since she saw him last a week ago.

I spoke to him over the phone around dinnertime. I almost understand what it must be like to speak to him from afar at this point. His family calls from Israel, for instance, and they receive next to nothing in response to their questions; yes and no answers, seemingly arbitrarily and unreliably, and some mumbling; gibberish to the listener. When we’re with him, we have some (but not much) nonverbal cues to draw meaning from, but over the telephone there is none of that. His thoughts and feelings are trapped inside.

I must get to bed; over-stimulation at this hour is not productive for me…Goodnight.

Stark realities while the sun continues to shine

2006-12-04T20:30:00.000-05:00

It was a difficult night for me. Gilly slept deeply, while I lay awake for hours on end. I suppose the situation is taking its toll on my nerves. I couldn’t shake the anxious feeling in my chest. Evening telephone conversations set my thoughts off in a million directions and my mind goes into overdrive. I will try to relax this evening that much earlier, in hopes that I can unwind and catch some desperately needed shut eye.

I spent 2 ½ hours at the CSSS this morning with Cathy and Brad. They are both exceptionally supportive and informative. I have much to think about and take care of over the next couple of days.

It was determined by the three of us that a hospital bed is now necessary for several reasons, most importantly because Gilly cannot sit up in our waterbed on his own, and slumps down even when propped up with many pillows. He needs better support when too weak to get up for a meal (he takes at least one meal a day in bed); it seems that his food is not going down as easily as before, and this is a serious health / safety risk.

It is devastating for me to have to accept this change; he always loved his waterbed (which I would have given up years ago if he would have allowed me to; it feels as if I’m crawling out of a swimming pool every time I have to get up and out). I’m not sure if he’ll notice the difference; time will tell. For now, we will set it up in Yaron’s old room, which is practically empty since he moved downstairs. I wish I had had time to put a fresh coat of paint on the walls, but this is not feasible now.
Cathy suggested that I contact Dr. Lapointe to ask several questions. He is in the best position to advise us on certain matters, many of which are too painful to write about, but must be addressed. They all fall under the umbrella of what he referred to as the rainy days we can expect sometime down the road; better to be prepared than have to scramble under duress.

I am beginning to feel numb; today I felt as if I was floating in the air, watching the proceedings take place in Cathy’s office. I walked through the steps of taking in the information; I wrote it down for the future, but could not fully appreciate the reality.

I broke down several times, which I try never to do. I could not contain myself; I decided to go with the flow of my emotions rather than fight them. Cathy supplied me with further details as to what I might expect over the next while, but offered no set time line; it varies from person to person, she explained however the progression is pretty standard. She made many wise suggestions as to how best to ease the situation for us as a family, and preserve Gilly’s personal comfort.

I was offered 14 hours of care per week (up from 8) because Gilly’s current condition now meets new criteria. I will scale down on Elizabeth’s hours if possible. First I plan to train the new person, which will be easier for me this time since my classes end this week.

Cathy and Brad asked how I’ve managed to remain so strong. I find my strength in love, I told them. Brad acknowledged that he sensed the love we shared from the very first day he met us. I reminded him that he was so moved, he almost gave the case over to another social worker. I’m glad he stuck with us for the long haul. He’s been a pillar of support for all four of us.

I jumped from this life altering meeting to the college; not great planning on my part. I should have cancelled my seminar, but in the end, I believe I was able to conduct myself in a focused manner, all things considered. I’m quite certain that my students appreciated my effort; it was the final group seminar of the semester and as usual, they didn’t want it to end Despite my difficult times this semester, we managed to form a strong working relationship.

I moved from the seminar to an hour of trouble shooting questions as fieldwork coordinator; many students popped in and asked to have a word with me. I managed to keep my head above water and answered surprisingly sensibly.

The final Fieldwork Committee meeting of the semester took place soon after, and again, I was able to remain on task, despite the many detours our conversation took. I find it amazing how I am able to forge ahead and take care of minor details in the face of personal trauma. It is just the way I cope, I guess.

Gilly is sitting beside me in the dining room as I type at breakneck speed, smiling every time I catch his eye to solicit one of his lopsided grins. All I have to do is smile, and he responds. In this way, nothing has changed.

I continue to grapple with the division between hope for rehabilitation and hope for his comfort (no pain, and a peaceful existence) as his overall condition declines. I only wish that the second hope wouldn’t have to represent failing him on the first. I’m still hanging on to what most would consider an ill informed wish that things could turn around one day. I owe it to him to keep on wishing until he sends me a strong message that he wants me to stop for his own good.

I have the sense that he understands the gravity of the situation, but hasn’t given up the fight. I remain his most devoted cheer leader, hesitantly preparing for the possibility of rain.

Bob and Ted and Carol and Alice

2006-12-03T19:38:00.000-05:00

Photo: Yaron and Liylah Gilly sitting

Since we couldn’t move Mohamed to the mountain, we brought the movie to our bedroom. It was quite a sight. Gilly slept on his usual side, with Marvin snoring beside him. Next came Sharon, and last, but not least, me. I sat on a comfortable chair, flanking the others. It reminded me of an old movie titled, “Bob and Ted and Carol and Alice” (or something like that).

I cannot begin to express my gratitude to our friends. Each one, in his / her unique way has managed to make a difference to our challenging life circumstance. Our weekends are still pleasurable due to their warmth, loving kindness, efforts and thoughtfulness. Last night, watching Marvin jump up to add thickener to Gilly’s juice opened my eyes to the depth of our friendship and his genuine devotion to Gilly. Today, I arrived home from an exhilarating walk with Sharon and Rosanne, cheeks rosy and coated with thick snowflakes, to find T watching over my sweetheart while Yaron was showering. I was more than just thankful; I was deeply touched.

These are just 2 examples of kindness directed our way; so many friends, so many gestures, so much love from family, so many offers of support from colleagues…my student called me on Friday because I did not show up at her day care. She remembered that I did triple time with her last week, but still worried knowing my situation…my heart is full. I am the richest woman alive!

Gilly is in good spirits today. He spent more time out of bed than usual. He continues to eat me out of house and home.

Dinner (and a show?)

2006-12-02T18:15:00.000-05:00

We ordered Chinese food for fear that the power would go off in the middle of cooking due to the icy, windy weather. Bad mistake. It was the only local restaurant in operation because the power was down in the surrounding area. We were obviously not alone; the restaurant was swamped, the delivery took what seemed like forever, and the food was cold and in my view yucky. Shabbat dinner tastes so much better when home cooked. I learned a lesson. It was still wonderful to be surrounded by loving people, even though the group was unusually small (just 9 of us).

The night went smoothly; now that Gilly has given up his escape artist career, there is little excitement. I even managed to sleep in until about 9:30; Gilly sleeps best after 6:00 a.m., so because it is a weekend, I took full advantage, and my mind allowed me some peace.

Gilly ate like a horse all day and slept soundly in between. Yaron remained at home while I took in a movie with Randee. The acting was excellent and we both thoroughly enjoyed it (The Queen, in case you’re interested).

Gilly's mood is good. He's almost always silent these days, but does not appear in any discomfort. He's truly been a sport about his plight from the get go, and has never shown true frustration or anger (except for the couple of times he shown some anger in his voice and with his words towards me, and once towards Tamara). I am thankful that I continue to be successful in eliciting a smile whenever I need one. Last night I was leaning over him while he was in the wheel chair to fix something and he grabbed me with significant strength, hugged me and kissed me. i was moved and exclaimed, "That's the best gift I've recieved in a very long time." He nodded knowingly. it was a rare moment and I will cherish it forever.

Gilly is awake, showered, dressed, and waiting for the Zigman’s to join us for dinner and a show. We’re not quite sure how we’ll manage the show part since the T.V. is downstairs, but where there’s a will, there’s a way, so we’ll decide how important the show aspect is once our appetites have been satiated. Sharon claims that if the show is a no go, we'll play charades. I wonder how Gilly will do? Who knows? He may surprise us!

Freezing raincheck

2006-12-01T18:34:00.000-05:00

Our night was spent peacefully; I napped and Gilly slept deeply. He didn’t fight me in any way, so it was not stressful.

I went off to work this morning just before 9:00. I decided to drive Yaron to school even though I was heading downtown. It was time to share yesterday’s information with him. Dr. Lapointe’s news took a toll on him, as I expected it would. We shared some tears and moved on with our day.

I completed some work, gathered up papers that I may need at home (who knows if, when or why?) and headed off downtown for fieldwork supervision. Brad called me along the way and so I stopped to chat. He offered to come by at any time. We got cut off at that point, so I left him a message saying I’d be home at 12:30.

Gilly didn’t manage to make it out of bed today until 4:00 P.M. This frightened me. The CSSS nurse happened to call mid-afternoon with Brad also on the line as I watched over him with trepidation as he slept heavily. Dr. Lapointe had mentioned unresponsiveness and growing sleepiness; I was sure I was witnessing a bit of both and couldn’t believe the prediction would come to be so rapidly.

The rule of thumb, according to Dr. Lapointe is to ask once (like if he want to eat, or get out of bed), twice, and then after a third time it would be considered forcing, so I shoud stop and wait a while before asking again. I asked every half hour on the half hour from 12:30 to 3:00, but he would not agree to eat or get up. This seemed highly unusual (although it probably is snot; I used to be more persistent, I think, in trying to get him up for what I thought was for his own good). Dr. Lapointe did admit that attempting to get him up to eat at the table, dressed and washed is a good idea and will keep him more regulated, s I should continue to try, using his rule of thumb.

I had a lump in my throat as I revealed to Cathy and Brad that I was scared. They probed further and discovered that I probably had an incorrect understanding of what unresponsive means. Cathy asked me to pinch his ear really hard. I did. Nothing. “Really, really hard,” she insisted. After a few tries he turned his head away. Then she instructed me to call his name. His eyes fluttered and he grunted softly in recognition. “That’s still responsive,” she explained. I admitted that I was not sure what this term meant exactly, and now it has been clearly defined. I felt much safer knowing exactly what unresponsiveness will look like.

They predicted there’ll be ups and downs. Perhaps Gilly is more tired today than usual due to yesterday’s outing; it takes a toll on him when he’s taken out these days. Cathy reminded me that if he’s in bed for long hours, I must turn him periodically. I was taken aback. Of course; but he has never remained in bed so long, so how would I have known? I’ve heard about bed sores and stuff, but it hadn’t occurred to me yet that Gilly was in danger of this happening to him. I was thankful for the tip. She offered several other ideas, and I remembered why I love the CSSS nurses so much; they’re extremely knowledgeable about so many tiny details.

Both of them assured and reassured me that they are there by my side. They gave me numbers to call at any hour for advice, and promised to update the help line with the most recent information. I will meet with them on Monday morning at 9:00 for further instructions they feel I need to receive face to face.

I finally managed to tempt Gilly with some lunch at 4:00. He ate voraciously. Cathy mentioned that she was there when Elizabeth gave him his breakfast because she had to give him his B12 shot and was astounded at how much he consumed. I laughed and admitted that they told me to fatten him up and that’s what I’m doing. After the enormous bowl of soup he lapped up (spicey ricey without the ricey; Tamara added noodles instead last week and Gilly loved it, which is strange because he normally refuses to eat pasta.), he agreed to a plate of fruit and polished it off in no time.

Now he’s showered and waiting for his children to arrive home with cousins and so on for Shabbat dinner. Unfortunately, Auntie Ruth will not join us. The ice falling on the sidewalk poses a treacherous climb up our stairs. We are not in the mood for any excitement that could be avoided, so she’s taking a freezing rain check.

I get la pointe

2006-11-30T18:34:00.000-05:00

I arrived home from work with a transport vehicle (avec foot rests) that I rented from a local pharmacy. I will keep it for a week and continue examining options. Between the 3 of us, we managed to lead Gilly out of the house, down the stairs and to the car without complication.

I used our waiting time t my advantage; I attended to minor tasks such as dropping off papers and consulting the nutritionist on how best to use the liquid thickener. Donna (the volunteer who was a neighbour of mine in the country way back when) couldn’t do enough for us. Cindy too; another volunteer who lives on our lake, stopped to introduce herself and play a little Jewish geography. I never met her, but she knows me. All this action made the time pass less painfully; I was jittery, because this appointment symbolizes to me the door which leads to the darkest part of my life.

Dr. Lapointe called us in himself, and started off trying to access information from Gilly (which was respectful on his part, although I do not believe he thought he’d get too far). He quickly made the shift to me and drew out pertinent information about Gilly’s current status and how it impacts on my life. He immediately suggested that I gather what he termed a ‘circle of care’ so as to allow me some time to sleep. I heard him loud and clear, but I know myself. I’m a light sleeper. I will have to reorganize the sleeping arrangements before entertaining the ide of having extended family members (which is what e suggested) come in and sit for the night on a rotational basis. Susie has made the offer already several times, but I’m not ready yet. For now, we are still in the same bed, and that is the way I want it until I simply cannot no longer do this. The progression from one state to another has been rapid of late, so there’s no telling how long I have left to continue sharing a bedroom with my one and only. My children will be first to tag team sleep with their dad while I catch a nap elsewhere, and I’ll take it from there. We all finish classes next week, so our schedule becomes more flexible.

I know I’m a weird egg, but I’m like that about sleeping; I must be comfortable in an emotional sense as much as physical. I’m what some would consider excessively attached to my side of the bed and so on. Some people (like Gilly) can sleep anywhere, anytime; not so for me. I’m not a great traveler for that reason. Years ago, when I worked at the Oral School, the staff used to go on an annual 2 or 3 day retreat for professional development purposes. It was somewhere near Lachute. I used to go home each night to sleep, while the others sang songs late into the night (that part I would have loved) and bunked together in 2’s or 3’s. It was not something I was comfortable with then, and I get stranger as I age!

Dr. Lapointe’s role is a difficult one, yet he was a perfect gentleman, had obviously read Gilly’s medical history in detail and showed a high level of compassion for all 3 of us. He explained that the meeting was arranged for today so that, when we need the support, the system will need only 24 hours notice to prepare a bed for Gilly. It may be at the Jewish, or at Mount Sinai. I asked if there’s a difference between the 2 in terms of care, explaining how important it is for us that he is made to feel as comfortable as possible. I realize now that my reasoning needn’t have been voiced; everyone must feel this way about someone they love. He said that the way the system works right now, we would not have a choice; we’d be sent to where a bed is available, but we could be followed by the Dr. at Mount Sinai, Golda Tradunski (spelling?) who he spoke very highly of.

He provided the pragmatic details; The CSSS nurse will keep Dr. Lapointe informed of Gilly’s status. When the time comes for Gilly to be hospitalized, she will make this decision and alert Francine Venne, Dr. Lapointe’s angel (he used this term exactly); his personal nurse at the Jewish. The wheels will begin to turn from that point on and we will be directed as to where to sign in. In the meantime, the Mount Sinai Hospital (which is in our neighbourhood) will contact us and we’ll go through pre-admission procedures, so all the paperwork will already be done beforehand. Dr. Tradunski will see us periodically at home, instead of having us drag Gilly to the Jewish for Dr. Lapointe to remain on top of his case. It is much more convenient.

I asked the same question I posed a few weeks ago to Dr. Kavan, but the answer was entirely different; more tangible anyway. He replied, “It will be at the point where Gilly will not be able to function at all. He will be much less responsive, and will be completely bed ridden. He mentioned that at that point, the Decadron will be reduced. I forget why (or maybe I just didn’t ask why), but he will remain on a smaller dose specifically for pain control. He will become sleepier and sleepier as a result of his condition, and fall into a deep sleep eventually (which sounds more peaceful than terrifying).

I requested a repetition of what signs I would be looking for, so I’d know. I reminded him that I want him to live at home in comfort as long as possible. He assured me that once he’s admitted, it will be solely for the purpose of maintaining Gilly’s comfort.

I had trouble holding in my need to break down and cry (the loud, gulping sort of moaning I had the need to express, but just didn’t want to release it in that setting, with others around). I managed to admit that I just don’t want to give up and lose hope, and making these arrangements feels as if that is what I’m doing. He reassured me by using an analogy apropos of today’s weather; when you know it’s going to rain, it is wise to protect yourself. Put all the pieces in order (have your umbrella ready; something I never do) so that when the need arises, all will be in place.

Back to pragmatics, he examined Gilly’s mouth. He reminded me to watch for thrush as a typical side effect of Decadron. This sort of infection may be bothersome, so it is best to take steps to avoid it. He offered suggestions. No one else has provided this particular information. I’m happy to have something concrete to do to reduce the risk of any undue pain or discomfort. Dr. Lapointe bid us good bye and wished us well.

What an amazing character this man is. He’s been working in the field for 30 years, and he sees an awful lot of cases. He did not directly say this, but he intimated that 3 or 4 months would be long considering Gilly’s current symptoms. I double checked with Jerry when we arrived home to ensure I heard correctly, and I discovered that Jerry understood the same information. No one has put any sort of a time line on Gilly’s future, so this statement took us aback. I’m still dreaming of the possibility of recovery, and my hope casts a veil over the reality that others, I suspect, are able to see. My mind understands, but my heart says NO WAY. Dr. Lapointe did admit that it is still possible for the condition to turn itself around, but the symptoms are all too familiar to him. I realize that Dr. Kavan has the same basic understanding, which is why he referred us to Dr. Lapointe now.

I find it interesting that many people have asked me about my faith this week. I’m not religious, in a formal sense, but I’ve taken to wearing my great grandmother’s Magen David of late even though the chain itches (I’m allergic to metal, so I rarely wear jewelry and never for days on end). I suppose it’s my symbol of faith; I feel somehow protected by those close to me, and I believe strongly in the force of nature. I believe that when I protect myself, it carries over in an umbrella-like fashion to provide security for Gilly and our children.

Could the experts be wrong? Is it time to give up completely on the possibility of recovery of any kind? I cannot let go of hope, but I will not drag Gilly through the coals like a guinea pig either. I made an executive decision to cancel the speech assessment (not to be confused with the swallowing assessment to be conducted by a speech pathologist sometime in the hopefully near future). If I take Gilly out, I prefer it to be for pleasure purposes, or necessary appointments.

Ups and downs

2006-11-29T22:21:00.000-05:00

Last night went smoothly and I managed to sleep a bit more.

Gilly has a tremendous appetite lately, especially at dinnertime. It’s either the Decadron talking or he’s gone back to appreciating my cooking; I would be lying if I said I could care less which.

He fell once this evening due to extreme stubborn behaviour. I can’t blame him for wanting his independence, but lifting him up from the floor is becoming more and more difficult. He literally defied me and refused my help.

I went out this afternoon to rent a transport wheelchair for the meantime because he needs a place to rest his feet, for goodness sakes. I shopped around a bit and will make a decision in the very near future. The O,T, from the CSSS is planning to call Lethbridge tomorrow to tell them to put a rush on the one they’re customizing specifically to his measurements.

I asked for all sorts of supplies from the CSSS to adapt the bathroom upstairs as well, yet in a more removable, temporary manner, since I am still vacillating as to where he should be located. There are pros and cons to each of the two levels of our home; most importantly we have to think of safety, but quality of life for Gilly is a close second. They’re pretty much neck in neck actually. What was not available from the CSSS, I purchased myself, so we’re all set.

We have our appointment with Dr. Lapointe tomorrow. I am anxious about it. I hope they have helpful advice for us in terms of tricks for coping with the home situation. The home environment seems the best alternative, and I want to know how to manage it as best I can.

It will be tricky getting Gilly out of the house tomorrow, but between Jerry, Elizabeth and me, he’ll be in good hands. We’ll take it slowly and carefully. The ramp is the next major project. I’m working on gathering information and then making a choice. There are several options to consider based on all sorts of variables.

I wonder if wheel chairs have snow tires???

I walked into my office this morning and gasped. There was an enormous basket of fruit on my desk, so heavily laden with fruit and other goodies, I couldn’t lift it myself. A few students came rushing in when they heard my gasp and found meunable to maintain my ‘educator’ composure. All the early childhood students who have had me as their course instructor, along with a few who still have not, contributed to this awesome basket accompanied by an extremely generous coupon for pizza. They each wrote a note to me wishing me strength and courage, encouraging me in all sorts of ways and assuring me that they are praying for me and my family. The waterworks overflowed; I had trouble pulling myself together. I was moved so deeply that I wanted to hug each one, but I had to get on with my day, so I caught just a few (knowing full well I would find a way to thank each and every student). That’s my style; one foot in front of another…I keep on going, because if I take too much time to ponder over my situation I will simply melt into tears and drown in my pain. One of my colleagues caught me just in time and helped me gather myself.

I probably sound repetitive, but obviously there is a pattern to our situation. The cycle continues…we reach an impasse and the stress level rises. It seems frightening and next to (but not quite) impossible to deal with. Somehow we wake up the next day and solutions magically appear...until the next hurdle.

Hard to believe I taught Nutrition last semester

2006-11-28T21:19:00.000-05:00

On the one hand, the night passed smoothly; no falls due to my sound trap! On the other hand, he was up every hour on the hour and I had to argue with him to stay put. He fought against my requests with all his might. I won the battle, but it was stressful and more exhausting than ever. But the main problem is solved for now; safety at night. Each problem needs to be solved in time; it’s not so simple to be patient when operating on so little sleep, but obviously possible.

I left peacefully at 8:00 because Laverne, the sharpest knife in my caregiver drawer was there today for the long run. He fell once in the bathroom when he shut her out, but she had a long talk with him and hopefully he will allow her to help. This is the hardest part; he shuts us out because he wants to retain his independence and dignity, but he forgets what he is unable to do (stand on his own at this point, along with many other everyday tasks; really very tragic).

Laverne stayed and chatted with me for 1 ½ past the time her meter stopped. She is a gem, let me tell you. I asked her to be honest; am I doing him a disservice by having him live this way in our home? “No,” she replied, “we just have to convince him to accept our assistance.” She feels that he is safest in our bed with me next to him as opposed to in another room in a hospital bed. I’m inclined to agree with her based on last night, but he’s going to drive me around the bend if he continues to try to break free as soon as I shut my eyes and drift off to sleep.

The CLSC dropped off the travel wheel chair on loan until the Lethbridge chair arrives in a couple of months. I sent Sheryl’s loan of a loner chair back to her house with Yaron, against his wishes; he had places to go ad things to do this evening. After he left I noticed that this dumb chair has no place for the feet to rest, just like the one that weighed a ton. How come they do not realize that his right leg will drag on the ground? I cannot take him out in such a chair…I have a long list of supplies I need from the O.T. I will call tomorrow and mention the foot rest problem.

I was so nervous about sending Gilly off down the front stairs with Elizabeth and Jerry tomorrow that I called the hospital and left a message asking them to postpone tomorrow’s swallowing assessment. It’s not a critical situation in that regard at this point, and I want to be sure that the stairs have a proper ramp and such before he is escorted out, especially when I am not there (or Yaron) and we both have a morning at Vanier tomorrow. My first set f students have class presentations and then I have a guest speaker that I’ve spent time and effort organizing. I do not want to cancel either one of my classes…I’m almost done…I’d like to finish my work if I can. Selfish? Maybe. Yaron offered to miss class and go along for the ride, but I decided that he needs to attend school. It’s my gut decision and I’m sticking to it.

I may ask if Lethbridge will do this assessment through Speech Pathology, since we have what Dr. Kavan feels is ‘a waste of time’ appointment for a speech assessment coming up on December 7th. Laverne agrees with Dr. Kavan, by the way. She is interested in accompanying Gilly to physio and working with him in this regard. She believes in this regard there is more chance for recovery. I will arrange this for next Tuesday. By then I hope to have a ramp set up. I trust her 1000% more than I do Elizabeth, so if it were to be her and Jerry tomorrow I never would have cancelled the appointment.

Laverne and I came up with a few game plans, and so I will work on further adaptations to the house over the next few days.

Yaron just came home from grocery shopping; he expected me to turn on the freezer we have in the garage just to store all the frozen junk food he carefully selected, because he bought more than what could fit into our kitchen freezer. I only turn the extra freezer on when I am cooking for an army (in preparation for a Passover seder, let’s say), and I’m not prepared to waste energy on junk!

This sort of event forces me to stand up and take notice of how my life is really out of control. Who sends an 18 year old shopping and expects him to make reasonable decisions? I should have started the training long before I needed his assistance.

I have to learn to reserve judgment, say thanks for his effort, and provide a much more detailed list next time. With Aaron’s help, we managed to squish it all in upstairs, but we’ll need a can opener to get anything out!

I am not amused

2006-11-27T19:36:00.000-05:00

The night itself wasn’t too bad, but while I slept soundly in the early morn, Gilly crept out of bed and fell yet again. He managed to push the wheelchair aside and skirt around it before falling; I had conveniently parked and locked it in a strategic location for him to easily get into before embarking on the trek out of the bedroom, but he has superhero tendencies and did not see the need for this support whatsoever. I was devastated and thought he really hurt himself. I tucked him into bed, had myself a minor breakdown, and then tried to convince him we should go to the hospital. He laughed off the suggestion and assured me he was fine. I begged him not to try this stunt again and we both had another rest.

I got out of bed soon after and started to prepare for the day. I checked him every couple of minutes, but managed to miss the next crash; he repeated the same act while I was in the kitchen. It’s as if he waits for me to disappear or fall asleep before trying to defy his own bodily constraints. I know now that I need an alarm to be attached to him so that f he tries to get up it will ring. I saw one in a catalogue, and now I will try to get myself one and fast!

I brought my papers to bed and remained next to him for the next couple of hours while he snored away. I was anxious to see Elizabeth (scheduled to arrive at 11:00) and fill her in on the development of his condition before running off to my 12 o’clock seminar. I became extremely antsy by 15. Where could she be? At 11:20 I called the company and explained the problem to Denise. She was concerned, but there was really nothing she could do. Yaron was home, but sleeping. I woke him up and sent him to bed with his dad with strict instructions to watch over him and not let him get up and fall (not that I had succeeded in keeping him safe). Yaron got out of bed and came to offer an empathetic hug before climbing into my side of the bed. I was tempted to throw in the towel and join the both of them; they appeared so peaceful, but took a deep breath instead and headed for Vanier.

Elizabeth arrived at noon. He excuse was that the bus had an accident and they had to wait for another bus to arrive. I suggested that perhaps she should have called me to let me know of the problem. She didn’t seem to understand what the problem was. I tried to emphasize the need for me to have some time with her to bring her up to speed on new instructions for caregiving, given his mobility problems and potential injury (what to look for as the day progressed), but she was adamant that she had no alternative, and after all, she was only a half hour late. I corrected her and explained that she is supposed to be here for 11:00, but she was under the impression that she is to start at 11:30 on Mondays.

I decided to eat the words I really wanted to use and confirm the time for the remainder of the week. I really have no time to make another change this week. I will see what I can do for January once I get the semester over with. December 12th is the last day of classes, so between Yaron and me, we’ll tag team from then on until I come up with Plan B. I do not teach again until late January, so I can be home more to tr out new scenarios. Perhaps Elizabeth can be trained, but maybe not. I want t try some hired supervision for the night hours, but I need to find another sleeping arrangement first. I cannot sleep with someone watching Gilly in my own room; it’s not happening, that’s for sure.

I really do not want to have to resort to restraints, but if Gilly continues to bypass the supports that are there for his safety I will have to consider how to ensure that he cannot do this. This is by far the most horrific thought I’ve had to consider yet; I’m not sure I can follow through, but his safety is at stake and it’s getting more dangerous by the day.

I know that he appears to be a lightweight, but dead weight is hard to lift. He is not able to help much, so it feels like I’m lifting a 50 kilo bag of sand. I won’t tell you what it’s doing to my back. I cannot keep this up much longer, so a solution is what I need.

I managed to hold my seminar, push some papers around and return home by 3:00, but it was not what I’d call a productive day (although I completed the grading of papers I set for myself as a weekend goal in bed this morning). I have a busy couple of weeks at work as the semester draws to a close; I hope tomorrow runs smoothly with Laverne arriving on time; I’m in no mood for further caregiver surprises.

We are about to have dinner; If nothing else, his appetite is hearty. I’m hoping for an ‘early to bed’ sort of night with no surprises. Yaron will help me barricade the exit and we’ll have to hope for the best. Although I try to remain awake and supervise, sleep overtakes me. It’s impossible to remain in my room next to him all the time when he sleeps and I’m awake because I have to accomplish tasks that take me to other parts of the house. We are discussing the alternatives for tonight, but so far no perfect solution. Gilly finds the conversation amusing; I am not amused!

Full house

2006-11-26T22:47:00.000-05:00

The house was jam packed with loving family members from near and far today. Gilly had breakfast in bed and was in good spirits. Later on, just before the first set of guests was scheduled to arrive, Yaron and I were sitting and chatting in the living room when Gilly woke up and got up and out of bed unbeknownst to us. I expected to have to awaken him, but he surprised us, and promptly fell on his way out of the room. Luckily he managed a soft landing. Following this incident Yaron and I had a great deal of trouble getting him dressed and out of the bedroom. We took turns until eventually he agreed to join the now two sets of visitors, and counting.

When he finally made it to the living room he was greeted enthusiastically by Uncle Butch & Cathy and Jerry & Tzilla. The door opened many times after that as more and more family arrived. Gilly ate heartily and slept soundly on the couch amidst a host of loving well wishers.

The weekend brought so many to our doorstep to offer solace, company, love and, as usual, lots of good food. By late afternoon we received a call from Duds offering us a lift to the restaurant, where we were to celebrate Jerry’s 75th. I planned to call, but hadn’t had the chance because the house was still on wheels. How thoughtful; more family kindness was sent our way without even having to ask.

Yaron and Tamara retrieved the lightweight wheel chair from Sheryl because Gilly’s balance is so poor due to his right leg that I wouldn’t even consider taking him out without a wheel chair. I hope the one from the CLSC is delivered tomorrow, but for now Gilly is safe. Throngs of family members helped us down the stairs and into Yam’s car, and helping hands took over for me at the restaurant end as well.

The dinner was more than delightful, surrounded by so many who care. I was thankful to have been able to get it all together, but as they say at the Academy Awards, I couldn’t have done it without this one and that one…etc; so many guardian angels were involved. The wheel chair is clearly the best mode of transport; Gilly was safe all evening long.

Gilly is tucked comfortably into bed, and that is where I am heading too. I know that changes are in order over the next few days as we settle into the use of a wheel chair in the home. Just getting him from the front door to the bathroom and into bed was a breeze this evening as compared to recent walker episodes. We’ll need a ramp for the front stairs (if we choose to remain upstairs) or a hospital bed for the basement if that is to be the choice location…all will need to be considered and adapted according to what seems to be in Gilly’s best interest, coupled with what is logical for me as well; everyone continually reminds me of the importance of ensuring the caregiver’s safety and comfort, because I will be no good to Gilly if I cannot sleep or hurt my back…lots to work out.

A winning smile

2006-11-25T20:08:00.000-05:00

The night was long, but in the end, not as dangerous as I had anticipated. Gilly’s right side was working well enough for him to maneuver to and from the bathroom independently (with me close behind, of course, but not offering physical support). We took an early morning snooze together long enough to consider substantial by today's standards (3 hours, in a row!).

I tried to get him up 3 times, from 11:00 on, but it was not easy. I wanted him to fully enjoy Barb’s visit and she was scheduled to arrive sometime after 11:30. I finally convinced him, and he wasn’t disappointed. Elana, Yael and Ronen stopped in as well. He had plenty of distraction, and enough food to last him for many days (of course we all know who’s really going to eat it).

I ended up remaining at home today with our guests. I watched his stability worsen gradually. His right leg started to buckle and his foot would not remain flat on the ground, which made walking with a walker, even with two assistants rather treacherous. I see some improvement this evening; the peaks and valleys continue appear and disappear in an unpredictable fashion. I encourage as little movement as possible at this point, and never leave his side. As of last night he no longer resists when asked to use the walker and doesn’t push me away when I try to help him. I suppose he realizes that he cannot hold himself up without the support of others.

Are both the caregivers able to manage this new development (if in fact it sticks…I never lose hope for some sort of recovery…could it be a set back that’s reversible?)? I hope so. I myself find it terrifying at times. The need for a wheelchair to get around the house may be imminent. This is a whole new chapter that I haven’t read yet. I seem to learn best on a need to know basis, but reading ahead clearly has its merits.

Susie refuses to take no for an answer, so she and my brother are on their way over with a chocolate bar (to satisfy my late night urge for sweets) and some DVD’s to amuse me as I watch Gilly sleep. Yaron’s friends will soon fill the basement for Hockey Night in Canada; I crave the sound of live voices. Gilly refused his son’s invitation to join the boys downstairs, which further indicates to me that he is feeling very weak. Selfishly, I am relieved not to have to fight with him to come upstairs to bed later.

Uncle Butch and Cathy are due for a visit tomorrow afternoon, and Barb plans to stop by again on her way out of town. We have no shortage of loving, caring support and the fridge is bursting with Barb’s healthy, delicious snacks. The only thing no one seems able to provide for us is a new scenario for Gilly, which is what we all need most. He is really very brave; never complains about his lot in life and continues to eek out a smile (albeit faint) in response to mine. He continues to play a love song on my heart strings.

Peaks and valleys

2006-11-25T01:17:00.000-05:00

Chrisitna’s call awakened me after nine this morning. I desperately need days where I do not have to be out of bed by 6:30. Gilly sleeps more soundly n the morning than he does at night. Chrisitina, the nutritionist from the CNR clinic, wanted to be sure that I received her message (I hadn’t had a chance to listen to it, actually). She felt it important to mention that if Gilly coughs while drinking liquids I should purchase a thickening agent to help him swallow. She gave me the name and told me where to find it.

Her dedication and perseverance is highly commendable. I now plan to take careful note of exactly what makes him cough and follow her advice accordingly. He did have a coughing spell last night, but not while eating. It is crucial to remain on top of this, because I have been warned repeatedly of the danger of having food go down the wrong channel. We’ll know more after the swallowing test next week, but she wanted to advise me in case I need to take action beforehand. I appreciate her concern for Gilly’s safety and well being. All professionals on the CNR team continue to amaze me with their genuine concern for Gilly, evidenced by their thorough follow up.

I accomplished more than usual for a day at home. I had a chance to request that the CLSC pick up the heavy wheel chair, because I do not plan to use it any longer. The O.T. understood my complaint and was shocked to discover that there were no foot rests. She agreed that I should seek out an alternative (and I have a couple of options in my back pocket) because the one from Lethbridge will take 2 to 3 months to receive. Moments after we hung up she called me back to announce that a transport wheel chair was located and will replace the one I have now. I was thrilled to hear the news, and relieved to know that this woman is fighting for my cause.

The day passed relatively calmly. We managed to get out for a walk (Gilly on his own two feet). It was a crisp and sunny autumn afternoon; just my kind of weather. The air did us both good. Tamara came by to hang out with her dad and then capably put Shabbat dinner together while Yaron chilled (they say I’m not allowed to use this word, but I’m feeling kin of spunky tonight) with Gilly. This allowed me to attend to school work; it feels good to be productive. I feel awful when I have to turn to my work with Gilly just sitting there all alone with nothing to do. Today he had company of the highest order, and so I worked guilt free.

We had a smaller gathering than usual, but the room was ablaze with conversation. I miss the chatter when the two of us sup alone; all I hear is my own voice.

Fred stayed late and some truth was revealed; he witnesses big changes in Gilly from week to week. This comment made it all too clear that, as I’ve suspected for awhile, I have lost perspective. I’m too close to the situation, so my judgment is off. I was under the impression that he is pretty much in the same state now as he was last week, but obviously, gradual changes are more apparent when visits are a week apart. It’s frightening; professionals rely on my subjective reports to collect a fair bit of their information. I have a responsibility to paint a realistic picture. I admit that neurologically, there are peaks and valleys as the day transpires. It’s difficult to comment on how he’s doing in a given day on average. Tonight, when he rose from the couch, Fred and I witnessed a rather deep valley. I am still awake because I am afraid he will attempt to get out of bed. I want to head him off at the path; he seems much too weak to walk without falling tonight, even aided. I hope it is a temporary lapse, and that he will regain some strength by morning.

Gilly’s very special cousin is in town this weekend. I pray that Barb’s visit tomorrow will be just the medicine he needs. If all is well, I will accept her offer to stay with Gilly while I grade some papers at the best library in town; Starbuck’s. I plan to cash in my gift card for a nonfat chai latte; I can taste it already. Thanks ECE gang this one’s on you. If I do have the opportunity to get some respite, I too will gain some strength.

Trust in the kindness of strangers

2006-11-23T23:26:00.000-05:00

Each day brings something new to our lives; today we made use of the wheelchair for the first time. Elizabeth accompanied us to the Jewish. As soon as I lifted the chair to place it in the trunk, I realized that Sema was right; it weighs a ton. It’s only a temporary loner from the CLSC; the one from Lethbridge, tailored to Gilly’s size is still on order. I hope it is lighter. Otherwise, we will have to move onto Plan B.

I decided that we would stop by at the physiotherapy department to see Thi and determine if Gilly is hardy enough to continue with the program. I had my reservations, and so I chose not to send him this week; he would have had to go with Elizabeth using the transport service. I just wasn’t ready to make that leap. I am forced to put my trust in the kindness of strangers while at work and this unnerves me.

Thi spent a short time measuring Gilly’s strength and overall mobility; we had little time to spare because our blood test was scheduled smack in the m idle of our usual physio appointment. On the way out I turned to Thi, who couldn’t help but display an expression of concern as he watched me settle Gilly back into the wheelchair, and asked if it still makes sense to come in twice a week. I explained that it is increasingly more difficult to travel; if he is unable to make use of the equipment (he now uses one rather than 3 pieces of equipment), perhaps we should examine the benefits. He suggested we come in next week and he will try to train Elizabeth to do some important exercises at home. I decided then and there that I would accompany her on Monday, because it happens to be possible this week, and we can both try to follow through. This has been a problem from the get go; he could be doing many of the exercises at home provided by the physiotherapist and the O.T., but he refuses. I handed the struggle over to the caregivers, but they have not been any more successful. He works well for Thi on site; that’s about it. I wonder if a personal trainer would work??

We met with Dr. Kavan, and as per usual, I provided him with more information than we received. He feels that the Decadron is having a positive effect, and so we should continue on the mega dose he’s on. I asked what the progression of the disease looks like; what’s in store for us exactly (a bold question; I wasn’t sure I wanted to hear his answer, but knew it was time to hear the truth). He admitted that he has absolutely no clue as to the prognosis; technically it is a benign tumour, and so very slow growing, but where exactly it chooses to grow and at what rate has yet to be seen.

He suggests we wait until December 20th (the post MRI appointment arranged to take place at the Neuro) to decide what to do about Temodal. I reported that although it doesn’t make Gilly sick, it weakens him significantly, and so creates more problems mobility-wise; he’d be in even more potential danger of falling than he is right now. If the tumour has grown, he wants him off the drug immediately; no deliberating is necessary, but if there has been no change, we’ll have to weight the pros and cons very carefully.

Based on responses to his queries, he acknowledged our decision to support Gilly at home as long as humanly, reasonably possible. He checked to ensure that we will see Dr. Lapointe (our appointment is next week). I asked why it is so important, now that we plan to remain at home. He assured me that we will need his support one day; he will guide me accordingly. I find the very notion of requiring this doctor’s services traumatizing, but I believe that more information is better than not enough. I’ve been caught unaware of crucial information before. Knowledge is power.

He asked Gilly several questions, and then glanced at me. I told him that we have an appointment for a speech assessment on December 7th. “Don’t bother. It’s a waste of time,” he advised and quickly bid us goodbye until December. He was called out of the room at that moment, so I glanced at the chart out of curiosity. I saw the words ‘disoriented’ and ‘falls frequently’ and decided I had read enough.

We met with Christina of the CNR team next. She did keep her promise to call me last week to check in, but it was the day we spent in the hospital, so I never called her back. She was delighted with the news that Gilly gained a kilo, and offered a few more suggestions. She emphasized the importance of the upcoming swallowing test (scheduled for Wednesday at 11:00) and asked me to ensure they send a copy of the result to the CNR office. I’m glad she mentioned this, because it was Dr. Kavan who wrote the referral at Nelda’s request. He won’t see Gilly again at the Jewish until the 18th of January, so the results may lie fallow. This way Christina can make recommendations around food texture changes if need be in a more timely fashion.

Dr. MacDonald asked about medications, and when I exposed the information about Decadron he asked if I’ve noticed any side effects. He explained that there may be positive as well as negative ones (such as increased appetite and energy). I mentioned his recent habit of telling me he hates me and that he doesn’t care about me, etc. He assured me that this is the Decadron talking; Gilly is not responsible for saying such things. Now again, I know that Gilly loves me and he’d never want to hurt me, but I thanked Dr. MacDonald for telling me this; it is comforting hearing this confirmation from someone so caring who is a art of the medical profession.

I told him that Thi will decide if it’s safe enough for Gilly to continue attending physio sessions next week and gingerly asked if he could continue being seen by the CNR team even if he no longer partakes in this aspect of the program. He assured me that we would continue to be followed, and even if we just need to come by to have talks such as this, it’s worth it. I thought to myself, “”What a fine gentleman he is. How lucky we are to have landed up protected under his capable wing.”

We chose to take advantage of late day sunshine and the new wheels; we walked to the car (uphill, unfortunately, since I’m already so very tired, yet still could be considered fortunate, since I sorely need exercise; it all depends on how you look at it). Pushing my main man uphill provoked a sense of determination on my part; we are more prepared to tackle obstacles than we give ourselves credit for sometimes.

It was tricky getting Gilly out of the chair and safely into the car while working against the force of gravity; I don’t have the brakes down pat just yet. We used to work well as a team, but now it feels as though we’re opposing forces; he wants to be independent, but moves like a drunken soldier and I want to protect him from falling, as he so often does these days. While this circus act was drawing to a close and Gilly was tucked in safely a young man passed by and offered to help place the chair into the car for me. He could plainly see that I was running out of steam and had one more hurdle to overcome. I accepted his offer without hesitation and thanked him profusely and repeatedly for his kindness.

I have been treated to more generosity, positive spirit and pure goodness over the last nine months than I ever knew existed on this earth. My colleagues have been more than friends, offering to do my food shopping, change my winter tires, give me lifts, clear my yard, share my workload and more, so much more. My colleagues have shown kindness, generosity and friendship. Acquaintances have proven to be angels in disguise. Many professionals have showered us with compassion, their expertise and genuine empathy. My friends have always been amazing (I choose carefully), but of late, they’ve become part of my family. I have always loved our family, but I treasure them more than ever; I would never have made it with my head above water if not for their support and undying love. In the face of adversity, so many have touched our lives and made a difference, and continue to do so in their own special way. There’s really no way to extend a great enough thanks to all for the many varied gifts bestowed upon us.

Return to cyberspace

2006-11-22T17:12:00.000-05:00

We have been without Internet access since I first tried to post this last Sunday afternoon, but we’re back in business!

Sunday's post:
We spent a quiet evening at home last night, watching a movie with the Zigman’s. The night passed uneventfully and so did today. Gilly performed better neurologically yesterday afternoon than he did during the evening, I’d say. No improvement is noticeable today, however no serious set back is evident either.

Yaron is in the process of dismantling Gilly’s office. It is exceptionally dusty and model train materials are everywhere. Gilly literally built himself (his display) into the room, basically and now we are trying to pack away the trains and accompanying materials in a respectful, careful manner. Gilly mentioned awhile back that he no longer uses these materials and showed an interest in selling them. They have been gathering dust for eons, and there is no way the room could be cleaned without removing the materials. We’ll wait on selling the materials for now, but Yaron will move into this room as soon as we have it clean (which could take a fair bit of time). I’m not sure why, but it feels like the right thing to do at this point. Gilly will be supervised by someone upstairs during the night or downstairs, depending on which scenario wins out. I feel we are taking affirmative action in a sensible manner.

Gilly offered us his blessing in terms of making the switch. We checked many times before embarking on the project, but as soon as the work got started, he had an emotional reaction. You could see it in his eyes. He says nothing, but it’s easy to read. His answers to questions are inconsistent. I believe it hurts him to know that he is unable to do what he used to spend hours on; he had a real passion for his model trains. He built each one as a true labour of love. I got him hooked on this hobby many years ago by buying him one piece of track and one locomotive model set. I’d say he stopped working on them about 5 years ago when his travels took him away too far and for too long.

I wish I could find a new hobby for him that he could enjoy; he spends his time sleeping, eating, and just sitting around. Nothing seems to bring him pleasure except phone calls and visits. He does enjoy music when we eat, but even the television brings him little pleasure due to sensory loss. I have been trying to solve this huge dilemma for months now, but I’m no further ahead. I hope to figure something out one day soon.

Wednesday’s post:

Yaron persevered and, with more than a little motherly prodding he managed to untangle the Internet problem. Hopefully, this will do the trick on a long term basis. It had something to do with splitters and wires and all sorts of matters uninteresting to me.

Gilly hasn’t fallen from bed since the new measures were put into place last Friday, but he has fallen here and there while traversing around the house, mainly because he flatly refuses to use a walker. Truth be known, he’s steadier than last week, but it’s still a relative term.

Now and then he appears disoriented, but this comes and goes. Because he hardly speaks and rarely moves around, it’s not clear how disoriented he really is. He recognizes voices on the phone, which seems to be a good sign. Susie called yesterday and I heard him say “hi Sue.” His answers to questions are increasingly more inconsistent. You could ask him the same question 4 times and there'd be a 50 / 50 chance of receiving a yes or no. He answered “yes” to Susie when she asked if he had gone to physio that day; he hadn’t, so it could be his awareness of reality, or a problem with memory, or, well, I don’t know what. Suffice it so say that his answers are not reliable, so we resort to guesswork based on what we know of his likes and dislikes, his facial expression and his mood.

We were called by the Jewish to come in for a swallowing test. First they mentioned next week at 11:00. I wondered how I’d get him there, since I teach Wednesday mornings, and then realized I could bite the bullet (I’m afraid of the unknown) and use the transport system. I was called back to ask if we'd come the following day instead (yesterday morning, in fact). I refused. It’s too difficult to plan it all at such short notice. Now I have a week to work out the kinks.

Gilly has made his way downstairs two days in a row, and refuses to come upstairs at my bidding. Yaron stayed down on Tuesday evening to allow me to nap, and then insisted he come up once he went to bed. Last night he gave me grief. I typed this downstairs on the couch, because he really needs to be in full view; he takes ridiculous chances.

A few days ago I mentioned to Tamara that I feel sad for my students this semester, because my teaching is not up to par. I admitted that I am anxiously awaiting the end of semester; I am just so tired and stressed that it is becoming increasingly difficult to focus on my work. Once I get home, I have realities to face at every turn. While at the college, it is hard to find a quiet, undisturbed location to catch up. Our offices are communal, and mine is located as part of grand central station, due to my role as fieldwork coordinator. Not having Internet access at home for two full working evenings did not help either.

She replied, “You know mom, you always give 150%, so even if you’re giving only 75%, it’s still more than some teachers offer to their students.” I felt somewhat consoled by her comment. It is true that I tend to try very hard to meet the needs of my students, and I care deeply about their learning. I especially hope to inspire them to make every attempt to extend their own learning; I share my passion with them for the topic at hand and hope that they will take the ball and run wit it. I make every effort to reduce their anxiety as best I can. Yesterday, a student came to see me in my office. She had something to speak to me about in confidence. She told me that she feels safe with me because of the type of teacher I am; she claims that I treat students with respect and share real life examples which students can relate to so as to bring theory to life during class sessions. I may not be accomplishing all of my goals according to my usual standards, but I guess I am having an influence (at least on some students), and for this I am a grateful.

I broke down during yoga class on Tuesday; kind of ironic, since I find this the most relaxing part of my week. Three quarters of the way into class all was quiet and calm as per usual. Suddenly my cell phone, which I normally turn off for class, started to ring. I noticed my instructor’s glance of disapproval as I slipped hurriedly out the door. It was a call from Lethbridge letting me know that they’d be coming by the next day at 9:00 to measure Gilly for a wheelchair.

I knew that I could not return to class; I was shaken by the call, because it gave me a melancholy feeling, and I was embarrassed for having broken the spell of peaceful mind and body connection we were all experiencing before the interruption. I waited outside the door during the cool down, which I needed just as much as the rigorous part of the session, if not more. Despite several invitations by my instructor to return, I sat outside and allowed tears to well up in my eyes. I let my guard down, and the waters came rushing forth.

I approached the instructor after class to apologize, but I could not speak coherently. She was exceptionally understanding and empathetic, as one would expect a yoga instructor to be. I remained on shaky ground for the rest of the day. I suppose I need the cry, but once I allowed my emotions to get the better of me, I realized how very badly I need to cry. It took very little to put me over the edge.

Lesson learned; leave the cell phone in my office next Tuesday.

I asked Yaron to spot Gilly for me that evening, and managed to get a few hours of uninterrupted sleep under my belt. I think that’s what I need most. Even when there is no good reason to awaken, I find myself stirring, riddled with an unsettling feeling. My body reminds me repeatedly that something is very wrong. It’s a physical sensation, akin to butterflies in my stomach, although I feel it in my chest.

Gilly sleeps for longer periods during the night; sometimes he goes for 4 hours at a time. I’m not sure why, but this allows me longer naps between the need for high alert. Once he sits up he takes an awful long time to move; I have to struggle to remain vigilant despite my body’s need for sleep. I remember my babies moving from constant night feedings to longer stretches of sleep. In those days, I played tag team with Gilly; Yaron is my new partner.

Yesterday I learned that my blog postings are useful to others in similar circumstances. One of my colleagues candidly let me in on the fact that she missed reading my blog postings this week; she told me that she shared an excerpt from a recent posting with her dad. He too is having trouble when his wife shows anger towards him. This is turning out to be an on-line support group of sorts. Months ago, a special person who lives afar shared the same sentiment; she too is a care giver and has been for many years. She sees many parallels to what she experiences, as does another friend I used to work with, come to think of it. I’m honoured to be of help to anyone through this venue. I find it fascinating how sharing an experience with others, something I started for selfish reasons may have far reaching effects.

Status quo

2006-11-20T16:31:00.000-05:00

My Internet is down at home once again, so don't fret. No change to Gilly's status. He has not fallen in days...I cancelled the order for the hospital bed for now.

The fall guy is up and running

2006-11-18T16:58:00.000-05:00

The adaptations to our bedroom worked like a charm; Gilly slept peacefully and when he had to get up, was secure. I awakened just as often, but not to the sound of his falling.

He awoke in a great mood. His speech seems slightly better, his right hand is not quite so limp and his movements are steadier 9everyhting is relative, remember). I asked if he’d like to take a walk, and he quickly agreed. I was not expecting an affirmative response, so I hurried through the preparations so as not to give him time to reconsider. We walked halfway around the block in damp, windy 4.6°C weather. He announced that he wanted to turn around. I tried to appeal to him to continue, since we had the same distance left to go as there would be turning back. I thought he’d appreciate his own success in making it all the way around the block. I can’t remember the last time he accomplished such a feat. He vehemently refused and would not listen to reason, so turn around we did. I was thrilled that he agreed to go outside in the first place.

I asked if he’d like to see a movie, and he showed an interest. We may just do that. I’ll have to see how he fares a bit later on. He had breakfast at 1:30 P.M., so I’d say we’re due for lunch round about now. He’s asleep on the couch. Sheryl came by with a travel wheelchair to loan us (we may not need it if he continues down today’s path; who knows? But it’s money in the bank, just in case). She stayed for a visit, and he promptly fell asleep. I’ll have to go make some noise to rouse him for lunch.

Days like today help validate the hope I continue to hold that Gilly will become stronger and enjoy a more independent, gratifying life. Both dips and rises along the rocky trail come at us unexpectedly. This one is so promising I’m almost tempted to cancel my call for the hospital bed. He was perturbed to learn that Sheryl brought the wheelchair over. I helped him understand that it is there to help me if we have to travel any significant distance by foot. I assume that the arrival of the hospital bed will elicit some serious resistance which I cannot blame him for. I’ll have to play it by ear over the next couple of days and see if a delay is in order. I don’t want to put a damper on his spirit; since our own bed situation seems to be safer, I may decide to put a hold on the request.

A long one tonight

2006-11-17T23:43:00.000-05:00

Okay, my part of Shabbat dinner is complete, so I will take some time to provide more details from yesterday’s Lethbridge adventure. As I predicted, getting Gilly ready ad out the door was more doable than I imagined, but it was still quite challenging. Approaching the center I noticed a parking lot on my right and paused for a bit to consider whether or not to park there; there were plenty of spots. I realized that I would have to let him off at the closest point, so I took my chances, passed the lot and turned into the circular driveway at the main entrance. I had Gilly use the walker (which he resisted, as usual, because I wasn’t sure how far we’d need to walk and what the terrain would be like. Having to take all this into consideration opens up a whole new world for me. I’m a bit lost and I’ve never been proficient at map reading.

I walked him to the elevator and then towards reception on the 2nd floor. I wasn’t sure exactly where to go, so I peeked in to ask. The secretary was with another client at the time (doing the same intake process she’d do with us), so I asked where I should have Gilly wait. I was frightened to leave him alone and run to re-park my car, because if his turn comes up, he would be at a loss, or he may get up without the walker and fall (remember this was only 3 hours after the last fall from bed). I tried to quickly explain my dilemma, but she said, “May I speak?” in a condescending tone. I was taken aback, because the woman (who I later discovered was the nurse) who spoke to me on the phone was exceptionally sweet. I stopped in my tracks and waited. She started to tell me that there is a parking lot just to the right of the building (the one I had passed). I didn’t bother to explain that this information was not useful; I was worried about Gilly’s potential movements in my absence.

We were seen by a doctor, a physiotherapist and her student first. The student was very unprofessional. Every time the doctor examined some part of Gilly’s body, her eyes opened wide with shock and she looked at her mentor. I know his condition is poor on a physical level, particularly the right side, but it is unusual to see such an obvious expression as the one she displayed. I hope her mentor recognizes this ‘flaw’ and helps her correct this behaviour. She is a student and still learning, but I found it unnerving. Let’s remember again that this was only 3 ½ hours since the last fall from the bed…I was still shaking.

This team was not very impressed with what they could do to help Gilly. They made it perfectly clear that they have their reservations as to what they could do to help, since he is not someone they expect to actually rehabilitate. The doctor told me that he cannot diagnose the problem with his arm due to the fall. I was never expecting him to do so, so I found this a weird comment. Then he asked what services I’m expecting to get at lethbridge. I reminded him that the O.T. at the Neuro (Robert) was the one who decided to refer us here, and so I had not considered this question before; I assumed his referral came with recommendations. I am not 100% familiar with all of their services, so how could I fully answer the question. I said that speech pathology would be nice and so would both O.T. and physio. They explained that a team would meet and decide what they could offer. They tested Gilly’s cognitive awareness, and I am certain that this determined for them that he is not trainable (which may or may not be so).

The physiotherapist gently suggested that we get a wheelchair to make it easier for me to transport Gilly to appointments. They were very uneasy watching him maneuver around the room and down the hallway with his walker. He was particularly unsteady that morning; it had only been 4 hours since his fall from the bed.

The speech pathologist treated us with a much more positive attitude, and seemed to take a real interest in Gilly and the possibility of figuring if he could be helped. She spent some time with us, and then set up a meeting for a more comprehensive assessment on December 7th. We agreed that she’ll need to be creative with her assessment tools and in coming up with compensatory strategies due to his visual challenges.

Next, we met the social worker and O.T. They were lovely; great listeners and full of concern. They oozed empathy and could not seem to believe how I am able to function considering the multi-faceted role I have in this whole affair. I admitted that the situation is tough, but I try to focus on dealing with Gilly’s day to day needs as they present themselves. I told them about my blog, and how I fid this to be helpful in several wys (thanks again, Joe). The social worker asked for the address and expressed an interst in the process, wondering if it may help other care givers. They asked me the same question as the doctor and physiotherapist; what services am I looking for? My answer remained the same. I was candid in saying that I am not hopeful that they will take Gilly on for physio or O.T., but made a plea anyway, because I could potentially attain both services in the same place, it is tremendously easier to park than it is at the Jewish (once you know the deal) and also closer to home. They promised to express my wishes at the team meeting, but did not offer false hopes. They bid us goodbye after determining that we had seen the whole crew.

It took some time, but we ambled over to the elevator and prepared to embark just as Louise came towards us, asking where we were going. She is the nurse who set up this whole session, responsible for pushing our case ahead due to the apparent urgency. I was unaware that she was a nurse. She helped us make our way back to the room; getting up, walking to and from the elevator and sitting back down is more of a chore than you might imagine. She did a brief examination, took the list of Gilly’s medications I was asked to brig and sent us packing.

I fear the visit was a waste of time except for the not so likely yet still the possibility of speech therapy down the line. The way out was easier than the trip in, because I knew the scene; I left him on a secure chair by the door, dashed over to get the car and carefully led him back into the front seat of the car.

I called Jerry as I drove off to help me get him safely to the emergency room while I park the car, knowing that I cannot park at that entrance even for 5 minutes. There’s something inherently wrong with that picture, now that I think of it!

After the long haul in the hospital, I vacillated between deciding to go to work and taking the day off. I could not rationalize having Elizabeth here while I remain at home (now I know how to cancel her if in similar circumstances again), so I prepared to leave the house upon her arrival. Just as I was preparing to leave, the phone rang. My student called to alert me of a gastro epidemic at the day care. She advised me not to come, and apologized for calling so early. She explained that she is concerned about having me bring gastro home to my husband at this time. I was flabbergasted. How thoughtful. The other two students at the same center called me one after the other with the same basic information. I thanked them profusely and took advantage of some bonus time. I brought my broken 24 year old vacuum cleaner into Mr. Fix-it, picked up more medication, and so on…there’s no end to what I have sitting on the back burner.

Brad called and we discussed many details of the current circumstances. He decided to solve the caregiver problem today, and actually managed to arrange for Laverne to come here every Tuesday from 8 to 5:00. I will pay for the 9th hour, but the CSSS will pick up the rest of the tab. I moved Elizabeth to Monday, Wednesday and Thursday (or Friday depending). So I’m all set, and I have 2 caregivers I trust and actually like. I feel somewhat liberated!

He asked how I am dealing with the situation, and expressed his concern for how well I seem to be holding it together. He warned me of the need for an outlet and offered support if I need it (as he always does). I admitted that if I take the time to release what I’m feeling inside, I will become a basket case. I’m the type that holds strong during a crisis, and falls apart when there’s no more need to be strong. That’s my style. I feed off of the need to address the pragmatics of the situation, and there’s no shortage of need in this arena.

The CSSS O.T. arrived with gizmos and gadgets, but not all fit the bill. The bed is now supported to some extent and the bathroom downstairs is adapted even further. I requested a wheelchair and a hospital bed. She wondered why the team at Lethbridge did not give us a wheelchair. She will attend to this early next week, but ironically has to do this through Lethbridge.

We had what has now become a Schwager hosted potluck Shabbat dinner; our week ended surrounded by loving family. I’m hoping for a quiet night with Gilly remaining on the bed as opposed to sprawled out on the floor. Yaron installed a bar along the wall to help him maintain his balance. He did fall again last night at 3:00 A.M. even though the barricade was put into place. Now I know for certain that there is no way he rolled out; he simply got up and tried to walk. The bars on the bed and along the wall will hopefully prevent this.

Gilly’s arm still hurts, but the swelling has gone down. Balance-wise, he’s not great, but his condition overall remains pretty much the same.

Raincheck

2006-11-16T22:14:00.000-05:00

Our lunch date took place in the Emergency room; rice krispie squares, apple juice and Decadron for Gilly, and leftover rice krispie squares and apple juice for me. Gilly took two major falls during the night, both from our bed. He either rolled off, which I highly doubt, or tried to get up and slipped (more likely). I awoke to a crash both times. The second fall was at 5:00 a.m. I noticed that his elbow was bruised, so decided to have it checked after the lethbridge appointment.

We made it on time, but I cannot go into details. I spent 9 hours at the Jewish, and I desperately need sleep. The Lethbridge story will have to wait. Nothing exciting took place, and we have no verdict yet on what service(s) they will offer, but he is scheduled for a comprehensive speech assessment on December 7th.

They took an x-ray and determined that it is unlikely that there is any sort of break to a bone. It may have been chipped, but he was released with a suggestion to take extra strength Tylenol. If that doesn’t help, then I have a prescription for something stronger. It only hurts when he moves it a certain way, and he rarely moves his right arm, so I don’t think we’ll need the pain killer.

He’s in bed right now with Yaron, munching on dinner and watching the hockey game. Yaron will help me secure Gilly’s side of the bed so he cannot get out even if he wants to. He will be trapped, so as not to fall unexpectedly. The OT is scheduled to come tomorrow afternoon with a bar for the bed (2 days too late, I guess), so we will only need this makeshift solution tonight.

While at the hospital, I asked the ER doctor (a nice fellow names Dr. Segal) to contact Dr. Kavan who happens to work at the Jewish on Thursdays to consult with him; I wondered if I should access the symptoms management team as he suggested last week. Would he consider last night’s events a major set back? His response was that it all depends on me and how well I can handle matters at home. I was relieved to know that his concern was for me; I was under the mistaken impression that he was worried about Gilly’s symptoms and was preparing me for the inevitable. I understand his reasoning now, and I am convinced that Gilly must remain at home as long as it is feasible. I will make sure that he receives the best accommodations we can provide for him, so as to ensure the highest quality of life possible.

Yesterday, Gilly showed some improvement. Could this have fueled him with more guts to take a risk last night? What might he have been trying to do when he fell? His falling may not be due to a set back after all (although the resultant injury sure doesn’t help matters).

I served him dinner in bed tonight. I offered all sorts of possibilities, and he settled on toast and cheese (smothered in butter). When I placed the plate before him he looked at me with disgust, “Why did you bring that?” he asked. He finished every last morsel of the toast. I returned and asked if he’d like some apple sauce and he agreed. He had a similar reaction to the apple sauce as soon as he saw it. It’s nights like this that make me feel ever so weary. In our 24 years of marriage, he never treated me poorly. For some, tonight’s behaviour would seem like a natural occurrence. For me, it is hard to swallow because I’m not accustomed to it. Gilly always showed appreciation for my efforts. I believe that his frustration with the situation is finding its way out of his body (finally, for goodness sakes), and it is being directed primarily at me. It’s safe enough, because I will adore him no matter what, but it’s still sad. Yaron reminded me that he doesn’t mean it, and I know for certain that he is quite right.

I have a lot to accomplish tomorrow; I will go to work in the morning (mainly because it's too late to cancel the care giver; I would need to pay her for 3 hours no matter what, so I may as well work). In the afternoon, I will greet the OT to receive all the adaptation devices. I will add a few to the list (e.g. I need a wheel chair for doctor appointments and what not. It’s just too hard with the walker. I will also put a hospital bed downstairs, so he has the option as to where to sleep; upstairs with the bar on his side of our bed or downstairs, with bars on both sides. I want to try different combinations to see what’s safest and most desirable). I too need my comfort. More sleepless nights will wear me out to the point that I will become unable to handle the situation. This is not helpful to anyone.

So that’s the long and the sort of it. Long day!!! Goodnight.

A table for two

2006-11-15T21:15:00.000-05:00

I’m pleased to report that today is looking a little brighter. Fewer sleep interruptions during the night may have helped; Gilly slept for 3 hour blocks instead of two,. I think we both benefited from more extended sleep time.

I arrived home from work at 1:30 to the news that Gilly is steadier on his feet today. He refused to use the walker all day long, and avoided falling; a slight increment of improvement to motor functioning.

I invited Gilly to the dinner table, but he repeatedly uttered the word “atmosphere” from his perch on the couch. He appeared distraught at first and then began to look annoyed. Yaron and I glanced at one another and shrugged our shoulders. He vehemently pointed towards the kitchen. Yaron got up from his seat and noticed that he had left the fridge door open. Wrong word; right idea. How frustrating it must be to try and get your point across, but have others confused as to what you mean to say. His words have been misfiled, it seems. It’s as if he speaks a foreign language; no one understands unless he offers a cue of some kind. If there is no clue as to the context of his utterance, it’s challenging to guess what he’s trying to express. He often shakes his head and says, “Never mind,” after awhile. I want so badly to find the key to release his thoughts that are locked up inside.

Tomorrow it’s off to Lethbridge VERY early in the morning. I am already dreading the preparation for getting out the door; I suspect that Gilly will have trouble getting up at 7:00, but there’s no other choice if we’re to be out the door by 8:00 (and that’s cutting it close). I suggested to him that we ought to get to sleep early, but he flatly refused. I realize that it’s a control issue; how much control does he actually have over his life? He cannot be forced to eat or sleep; these choices are still within his grasp. I must respect his wishes and try to be patient, but I’m well aware of what awaits me in the morning. We’ll get through it somehow; my anticipation is often worse than the eventuality. I’m banking on that being so…Be strong, Cindy.

We’ll play physio by ear. He may be too tired to go, but I’d like to keep the option open in case he’s game, so I haven’t cancelled. I used to say “one day at a time,” but now I have to split the day up, and say, “one appointment at a time,” especially when we must move from one part of town to another. I have Jerry waiting in the wings to take over as needed in case it appears as if I will have time to see at least one student in the afternoon, so as to ease Friday’s supervision schedule. We’ll see how the morning goes and take it from there.

Every little improvement is cause for celebration, so perhaps I’ll take my boyfriend out to lunch tomorrow. Throughout our married life, I cannot remember ever having the time to break bread together in the middle of the day during the work week, so why not take advantage when the opportunity presents itself? We could both use a change of scenery.

Much to look forward to

2006-11-14T20:54:00.000-05:00

As he smiled at me from a distance, he slumped off of the couch and onto the floor. Luckily, it was a gradual fall; he was not hurt. I literally watched it happen in surrealistic slow motion; now you see him, now you don’t!

The night passed without incident. Both Manuela and Elizabeth showed up at 8:00, on schedule. I explained the predicament to Manuela, and she understands. I hope that Elizabeth can hold down this fort; too much disarray is unnerving to me at this time.

I wasn’t called by the new care giver last night (as peggy promised), so I asked Elizabeth if she would stay if she doesn’t appear at 2:00 P.M. as planned. She readily agreed; one less worry on my plate. I would have had to cancel my class (which begins at 2:00), so I was relieved not to have to make arrangements on the spur of the moment (not that my students would mind a freebie, but I’d like to complete the semester to the best of my ability). I asked Elizabeth to demonstrate for the new care giver, if she shows up, how to assist Gilly in descending and mounting the stairs safely. This is my key concern when a new person enters the scene.

Laverne called me at 10:00 this morning to inform me that she’d be at the house for 2:00. She explained that she was unable to call last night; she spent the night at the Jewish with a client and only received Peggy’s message this morning. I quickly filled her in on some details and mentioned that Elizabeth would show her how to manage the stair situation.

I arrived home to a quiet, relaxed scene. Laverne is genuinely lovely. She’s 2/3 of the way through her nursing diploma; an evening student at Vanier College. She joined us for tea and I got to know her a bit. My instincts sent me a powerful message; I asked if she has other days free. She’s by far the sharpest knife in the drawer I’ve seen yet. Unfortunately, she’s all booked up (hardly surprising). I asked her to let me know if anything changes. For now, we’ll have to settle for Tuesdays from 2:00 to 5:00.

Gilly’s condition seems much the same as it was yesterday, which I find somewhat discouraging. I was under the impression that he would continue to improve each day on Decadron, and that the pace would eventually pick up. I did a reality check and came to the conclusion that this is a pipe dream. Dr. Kavan told me a long time ago that injury to the brain can cause immediate, detrimental effects, whereas healing tends to be painstakingly slow. It stands to reason, then that if the Decadron is indeed reducing the swelling, the damage done will not repair itself anywhere nearly as quickly as it developed in the first place.

I just noticed that Elizabeth left her shoes and comfortable housedress here. This is a good sign that she expects to return tomorrow. I’m happy, because Yaron and I leave at 7:30 tomorrow morning, and I’m in no shape to catch another curve ball thrown at me at that hour.

One day at a time

2006-11-13T19:30:00.000-05:00

If you’re dying to know the final verdict in terms of hospital or no hospital, scroll down to the bottom. If you can hang onto your hat, then take your time with the details in chronological order.

Yesterday was truly tag team Gilly care; Yaron picked up Tamara who came over to spend the late afternoon and early evening with her dad. I went to a movie with Tina, and loved every moment (not to mention devoured every kernel of popcorn. The time away allowed me the space and change I needed to regenerate (which is a relative term). I called the house on my way home to find out that Yaron went out to get hamburgers for the three of them, and they were enjoying their special time together.

Yaron does a fine job of taking care of his dad, but there’s something about having Tamara around in my absence that comforts me. She is a reflection of me in many ways; I suppose it’s all about role modeling. Now and again Gilly used to stay home alone for a couple of days with the children when they were small. This was more than fine in small doses, but I used to worry that he never served them vegetables (except French fries). They ate salty, fatty foods and loved every minute of it. They were none the worse for wear, but a steady diet of this sort of thing would never do (in my mind, anyway). I used to say, “If I leave for good, the children will land up with scurvy or something.” Well, Yaron and his dad do fine together these days in my absence, but when Tamara’s around, I know he’ll be given his medication and will certainly eat his vegetables (and protein, and so on…whatever I ask her to do, I know she’ll follow through on, and then some).

Yaron has his merits, unquestionably, so don’t get me wrong. Last night he offered to handle the bathroom runs during the night. Gilly awakens every two hours, gets up and begins to walk out of the room. I jump up and stand on guard and usually follow him to the bathroom, wait and ensure that he returns safely. Last night Yaron dashed to his father’s side as soon as he hit the hallway and sent me off to bed. I accepted the assistance with gratitude, and managed to fall back asleep each time, because I had a competent assistant watching over his dad with loving tenderness. What a beautiful sight in the wee hours of the morning; one I never imagined seeing.

The scene brought Robert Munsch’s book “Love you Forever” to mind; a gorgeous tale about a mother loving and caring for her son as he matures, and goes full circle with the son loving and caring for his mother. Reading the book to children never failed to bring tears to my eyes and a lump to my throat; it is the epitome of poignancy. Tamara bought it for me for mother’s day a few years back and I treasure her prolific inscription inside.

I called Equinox early in the morning to ask that Elizabeth come on Tuesdays from 8 to 2:00 (in addition to the other two days a week), since I feel Manuela is ill prepared to handle Gilly’s situation. I feel badly, but tomorrow will more than likely be Manuela’s last day, because I cannot afford to have both women on the same day. I hope Elizabeth can do some light housework while Gilly sleeps, and I plan to ask her kindly not to move my things around. It disturbs me terribly, especially when the rest of my life is so mixed up.

I awoke strangely refreshed and was able to get a few hours of school work accomplished before Veronica’s arrival. Imagine my surprise when Joy bounced in, right on time, instead. I asked what happened to Veronica, and she replied, “Who’s she?” I had not factored in the time required to give her the umpteen instructions she’d need, and Elizabeth threw out the notes I wrote to guide her through Gilly’s rituals last week, so I had no choice but to start fresh. What a drag; I went from being right on time (early in fact for the seminar, expecting to have lead time to get some more work done at the college) to dashing out frantically, hoping I’d get there in the nick of time (which I thankfully did).

I suspected that Veronica was unhappy; she doesn’t like Liylah, but someone could have told me ahead of time. Apparently, Joy is only available on Mondays, so she will not come tomorrow afternoon; a whole new person will show up at 2:00 for 3 hours and I will be in the middle of teaching a class at the time. I called the company that sends the care givers for the CSSS and asked Peggy (from Paraide) to have the new person call me this evening. I hope he / she does. Gilly is scheduled to be helped with bathing tomorrow afternoon…what can I say? The situation remains unsettled, it seems.

I called Dr. Kavan to report on Gilly’s condition, as he instructed me to do. I spoke to his secretary and explained that there is a very slight, marginal improvement overall since he was seen at the Jewish on Thursday afternoon. She hung up, relayed the message and called me back to say that Dr. Kavan suggests we continue with the steroid and stay at home for now. If his condition worsens, I’m to call the oncology department and speak to his primary nurse before bringing him in to the hospital.

I find this news to be encouraging. I hope we can care for him in his comfortable environment surrounded by people who love him. I may have to look into moving our bed downstairs (although I hope I will be able to relax and sleep there; it’s not my habit to unwind in this room and I’m a bit of an old dog when it comes to new tricks, but I may be left without a choice). We’ll see; I have to remind myself that we can only plan one day at a time.

It’s 7:00 P.M. and I’m still receiving smiles from my boyfriend from across the room. He’s lying on the couch as I attend to my work (and blog; my emotional outlet). I suppose it’s time to prepare dinner.

News in brief

2006-11-12T22:08:00.000-05:00

I have Gilly already tucked into bed, so I’ll be brief and catch a few ZZZZ’s while I can.

I’d say there was a slight improvement to overall functioning today (both speech and his right hand), but this evening there was yet another dip to where he has been for awhile. He fell once last night and nearly once more this evening. The falls occur even under close, constant supervision, mainly due to his stubbornness. He adamantly resists help of any kind. Luckily, he did not hurt himself.

He is forced to go slowly on the stairs, especially in the downwards direction. I tried to have him go down on his bum, but he flatly refused. No accidents have happened on the stairs.

Goodnight all.

Hate is a very strong word (so my father always said)

2006-11-11T18:19:00.000-05:00

The evening was delightful, except for the reality that could never be erased from our minds. Gilly went downstairs for the first time at about 9:00 or so. He became wakeful, as his new habit and refused to come upstairs to bed no matter how much I begged him to do so. I went down every ten minutes until about 2:00 to make sure he was safe, and left both the gragger and walker at his left side for easy access. I must have dosed off for a few moments, and sure enough, he appeared at my side, having taken the stairs unassisted. Incorrigible is not the word. This act has nothing to do with cognitive confusion and everything to do with his stubborn, independent streak. I will have to solve this problem.

We slept most of the night, only awakening for a few trips to the bathroom. He was safe with his walker, but I followed along regardless.

He allowed me to serve him breakfast at around 10:30, but refused to get out of bed. I insisted he rise at 2:30 P.M. to greet Randee and then Anita and Bernie. He was pleasant and ate well. He especially loved the mango and figs Anita brought him as a treat.

My only complaint, other than mounting, sheer exhaustion is the fact that he told me twice today that he hates me. This is a brand new experience for me; we’ve had marital spats in the past, but neither one of us has ever made such a claim. Although I fully understand where it’s coming from, I cannot help but feel devastated. He loves me as much as he ever did; this I know. He spoke to me this way, more than likely, as a release of anger directed at me, but really as a result of his situation. The other possibility is further cognitive deterioration. If I had a choice, I’d opt for anger; it is to be expected.

I noticed him attempting to use his right hand on several occasions today. It seems to have loosened up slightly. Could the Decadron be having a positive effect? I have my fingers crossed very tightly. On a physical level, I have not seen any deterioration since Thursday night (we started the 5 day trial of Decadron on Friday); another good sign. You may think I’m grasping at straws, but I firmly believe that if there is swelling and this can be controlled, we will see improvement over the next few days.

We have friends and family coming to join us for dinner; I need the diversion as much as he does. We are both looking forward to a pleasant evening. He is catching up on some snoozing while I try my best to rid the house of dog hair and keep a watch on my brisket (comfort food of the very finest).

A long winded tale of woe, sprinkled with hope

2006-11-10T15:26:00.000-05:00

Just for the record, Maria blew it. She still has not called, and so although I felt she deserved a second chance, I was way too generous. The response from professionals at the Jewish is much more reliable and swifter. I’m glad we made the choice to stick with the oncology team and the services of Hope and Cope.

The night was nightmarish. Gilly refused to come upstairs, so I set my ears on alert and went to my bed to have a nap. He got up and fell on the coffee table, smashing one of the 4 glass panels to smithereens. I ran down when I heard the crash and found him stuck with his rear end in the hole where the panel once covered and glass all over the place. He himself was unharmed, but I let out a bloodcurdling scream upon entering the scene, which shook us both up. Yaron was at hockey (this was about 10:00 P.M.) at the time. I cleaned up the mess and begged him to come upstairs to bed. He laughed at me (as he has always done in the face of any sort of danger) and assured me he would sleep in his chair. I put a huge gragger beside him that makes a horrendous ear shattering noise (Gilly bought it years back to use as a cheering device during Yaron’s hockey game). I begged him to shake it when he wishes to come up and I will come downstairs to help.

I must have fallen asleep again, because the next thing I remember seeing was Gilly’s grin in the doorway to our bedroom. “How did you get upstairs,” I asked incredulously. “I walked,” he replied nonchalantly. I couldn’t believe it. I decided then and there that no matter how my solution plays havoc with his dignity, I will bar his access to the stairs somehow; I do have a Fisher price gate!

During the night I heard him stir so I asked if he wanted to use the bathroom. He muttered affirmatively, so I went around to his side, got him his cane and walked him slowly to the bathroom. I was standing right next to him when his right leg gave up on supporting his weight (which isn’t much, let me assure you) and he fell right before my eyes. I tried lifting him, but he angrily refused my assistance. I am stronger than him for the first time in our lives together so I won the battle and set him to right. I was shaken to the nth degree, and wondered when I would get any real sleep ever again.

Yesterday’s visit to the Jewish was long, arduous and not at all encouraging. Before I go into my usual lengthy dissertation on the events that occurred, I’d like to assure you all that today seems much more promising.

Gilly’s usual session with Thi consisted mainly of training hi to use a walker. Motor functioning had deteriorated radically since the last appointment when Thi had gently suggested he begin to use a cane. I met Elizabeth in the physiotherapy department waiting dutifully at the entrance. My mother had dropped the two of them off and I was scheduled to meet them upstairs at 2:30. I was a few minutes early because I found a parking space (albeit quite a distance from the hospital, but it was meter free; I take these opportunities when I find them, because parking at the hospital is costly and we are there on a regular basis. I wondered why Elizabeth was not inside watching the session where I expected her to be, but decided to address all the ‘Elizabeth’ issues at once, and this was not the time or place.

I discovered that the doctor could write a prescription for a walker, and we could pick one up at Slawners. I knew in the back of my mind that Sheryl had one to lend, so I tucked the information away just in case and made a mental note to call Sheryl on the way home and pick it up.

Gilly had to use the washroom before heading upstairs for the pre-kavan blood test. This presented a terrifying scenario I had not encountered before; how would I prevent his falling if I could not enter the room? I asked Elizabeth what she thought we ought to do, but she was as frightened as I. She had spent the morning getting him out of bed, showered and shaved and ready for pick up; she was frazzled and I do not blame her for that. I expected her to be used to this sort of work, but perhaps Gilly’s condition is worse than anything she’s ever had to deal with. Or perhaps the tasks are just too great to expect anyone to comfortably manage. He is totally off balance, and so the fear of having him fall is a natural reaction. He ended up solving the problem for us by scoffing at our concerns and going in there on his own and returning unscathed. Phew!

We left Elizabeth at the elevators visibly shaken, bidding her adieu until next week. I promised to solve some of the existing dilemmas revolving around ensuring his safety by the time we see her next, assuring her that the OT is coming to the house tomorrow to help us find some solutions.

The CNR team was to see Gilly at 3:00 and Dr. Kavan at 4:00, but they were running late. I had serious reservations about disappearing into an examining room with Nelda because I was afraid we’d miss the call for Dr. Kavan. Cynthia, the CNR coordinator understood my concern and gave strict instructions with the volunteer to alert us as soon as Dr. Kavan is ready. Gilly was weighed, and I was surprised to discover that he had lost weight. Nelda asked if he’s had a swallowing assessment and I told that the OT had done one. She said she’d recommend referring him to speech pathology to have one done as soon as possible. He has been eating well, but I suppose the condition is sapping more out of him inmany ways and she wants to determine exactly what the situation is. We met the new dietician who would handle Nelda’s Wednesday / Thursday caseload from now on (she has too many patients to follow single handedly) and then were ushered to a room to await the big man on campus.

Dr. Kavan entered the scene at least an hour after the actual appointment time and greeted us warmly. He asked how everything was going, and Gilly said, “Great” in a meek voice. He looked into my eyes with genuine concern written across his face, because just looking at the way Gilly was sitting in the chair told him that things were not great at all. I brought him up to date, and he quickly came to the conclusion that his rapid deterioration may be attributed to a long-term effect of radiation. There may be significant swelling on his brain (in his brain, around it??? I’m not quite sure how he would accurately put it and I did not ask this question at the time).

This is where the story becomes grim; he suggested a 5 day trial on a massive dose of Decadron in the hopes that it would reduce the swelling. If so, we should see a gradual change in motor and cognitive functioning. If not, he highly recommends hospitalizing Gilly. He explained that if it is not swelling, we should see a rapid decline and the symptoms would be impossible to manage in the home situation. He wants us to be seen by a symptom management team upon entering the hospital. Even if there is an improvement, he advised that the team should see him as an outpatient as soon as possible. He threw another term my way (I believe Gilly had fallen asleep in his chair by this time) which puzzled me; PCU. My stomach fell to the floor when he translated; palliative care unit. I was not prepared to hear this news, but I had no choice. I used all my strength to hold back; my instinct was to wail uncontrollably, but this is not something I can do in front of others, especially a doctor.

He wrote out prescription fro Decadron and two referrals; Dr. Lapointe of the symptom management team (I prefer this terminology) and speech pathology, to conduct a swallowing test (I mentioned Nelda’s suggestion and he agreed it is important to take care of). Robert had conducted a rudimentary form of a swallowing, but a more conclusive test is warranted at this point, it seems. Swallowing incorrectly and having food go down the wrong tubes can lead to grave circumstances, such as pulmonary infection. Robert had explained this to me during the assessment and provided tips to prevent this occurrence, but Gilly’s functioning was significantly better at that point.

Dr. Kavan was visibly astonished when Gilly rose to leave; he was so weak and unbalanced that he could not understand how I’d get him home in one piece. “Where’s your car parked?” he asked with trepidation. I admitted that I have a long way to go to retrieve it, but I assured him that I am quite capable of protecting my most precious package; we will take it slowly.

Of course Tamara and Yaron are equally precious; this goes without saying, but I have to say it anyway. I mustn’t forget to protect them too. Last time Gilly was hospitalized (the only time actually in all the years I’ve known him) I neglected to even consider ensuring that my son was well fed. Luckily, friends and family stepped in and remembered for me. Sure he’s old enough to care for himself this way, but he was in as much pain as I and needed some TLC; Tamara, who lives on her own, is much more accustomed to fending for herself.

We managed to get to the Legare entrance where I set him on the bench to wait. The skies had opened up and the rain was coming down with a vengeance. I was physically and mentally unprepared for the change of weather. No more worrying about free parking, I decided. The time has come to get the handicap sticker that Robert had suggested earlier. I balked at the idea, explaining how it motivates Gilly to walk a bit, but this is no longer a safe plan so I made yet another mental note to apply for the sticker tomorrow.

The evening ran smoothly but heavy emotions dragged us all to the ground. Tamara and Max arrived, walker from Sheryl in hand, to allow me the time away from what was becoming a progressively, rapidly grimmer scene on the home front. Trudy and I went to Bistro for dinner and happened upon an evening filled with live music from our early days. Two acoustic guitarists acted as the pleasurable backdrop I needed to spill out my heart and laugh at good memories of years gone by. Trudy and I share an awful lot of history. We’ve been friends since 4th grade, and she is responsible for my marriage; she gave Gilly my phone number and advised him not to call me on a Saturday night, which he defiantly and promptly did. The rest is history.

Meanwhile, back at the ranch Tamara and Max removed the coffee table to keep Gilly out of harm’s way. Gilly, protesting all the while tried out his new walker for size. I returned home to a quiet, relaxed yet melancholy scene. Tamara’s eyes were red rimmed; “He called me Maria,” she revealed brokenheartedly. I turned to him and asked, “What’s her name?” “Tamara,” he replied with a thick, Hebrew accent. “Well, he only knows my name in Hebrew,” she complained with a hint of humour in her sad Betty Davis eyes.

He refused to come upstairs to sleep; my head was pounding. Getting away for a few hours works wonders, yet reality continually slaps me in the face as soon as I return to our life as we now know it. Yaron arrived home from transporting his sister homewards, so I asked him to go downstairs and try to convince his dad to come up. He was equally unsuccessful, but relieved me by remaining downstairs until such time as Gilly would agree. I closed my door and took advantage of a few hours of sleep. Gilly did arrive later on, escorted by Yaron and I immediately assumed “on duty” mode.

The night passed without incident. The walker helped ensure his safety to and from the bathroom, and so I had a chance to nap more restfully.

I spent quite some time pulling him out of bed this morning to greet the OT from the CSSS who came to do a home assessment. I realize now that I gave that first OT (who cam last April, I think it was) a bad rap. She was for seeing the future, but I perhaps unfairly shot the messenger. Today’s OT was gentle and empathetic. She perused our surrounding and determined that very little else is needed at the moment. She will lend us equipment to round out what we already have, and she determined that he is still capable of moving down those treacherous stairs to the basement as long as he is well attended. I was relieved. She made me feel as if Gilly being made comfortable and safe at home is doable, and for that I am thankful; she offered me a bright light of hope for a future including my sweetheart here at home with us. She will return in one week’s time with the goods and a filled out application for a handicap sticker. Deep sigh….

Gilly slept on the couch in the living room for most of the day in between meals next to that godforsaken coffee table that we moved to the location he rarely spends any time in. Go know! He’s had two doses of the new dosage of steroids; we have yet to see if there is any change in the upwards direction. Certainly, there is no further notable deterioration as of today, although he’s very tired. This is to be expected, because I had to awaken him earlier than usual.

I received a call from speech pathology at the Jewish asking me what Dr. Kavan means by an assessment, because he gave no specific instructions. I explained that he wants a swallowing assessment, and she then understood. I threw in the fact that he also may have expressive aphasia, but she explained that this is not addressed on an outpatient basis, so they will only do the swallowing assessment, and she will call next week with an appointment. I asked her if Lethbridge deals with expressive aphasia, but she was not sure.

Lethbridge called moments later and set the appointment for Gilly’s assessment for next Thursday morning. I will need to change my field work day to Friday. Luckily I have the freedom to do so, meaning I needn’t miss a day of work.

The CNR coordinator called to say that Gilly’s next appointment was made to coincide with Dr. Kavan’s next visit on the 23rd, so as to avoid us having to come in too often. I expressed my appreciation for her consideration to our situation. She was clearly saddened by what she witnessed yesterday and wanted to do all she could to help.

I have been working periodically on this blog entry all day, and so it’s time to sign off. You’re all up to date and then some. I had to put down all the facts so as to run through the recent disturbing events again, this time as out put. The input forced me to have that need. We’re off to the eye doctor shortly and then a small contingent of family members are coming for dinner; bringing it, actually. I hope our trip runs smoothly and that I can park close by! Gotta get that sticker yesterday.

Where are my spoons?

2006-11-08T20:50:00.000-05:00

Elizabeth is lovely. She is sweet, gentle and caring. She loves to clean while Gilly sleeps, but I was unprepared for instructions in this arena. She took initiative and organized some of my kitchen drawers and cupboards; problem is I like to know where all my utensils are, so it’s a little alienating. She wants to know how to use my washing machine and where the cleaning products are kept…if I had time to spend with her I could show her. All in good time. I reminded her that the #1 priority is Gilly’s comfort and safety and she wholeheartedly agreed. We’ll manage to strike a balance; my house certainly can use some shining around the edges. I just have to find a way to break it to her gently and ensure that she does not move my stuff.

Last night went smoothly. Gilly spent the night on his chair downstairs, refusing to come upstairs. I checked on him periodically, but I managed to sleep well in between. He agreed to mont the stairs at 6:30 a.m. just as I got busy preparing platters for Gilly and notes for Elizabeth. I was unperturbed, knowing that Elizabeth would give him breakfast and lunch, which she did. I had a peaceful start to my day, and I’m sure my students noticed the difference in my demeanor between this morning and yesterday’s harried entrance. All went smoothly throughout the day.

I was lucky enough to get a lunch hour walk in with Cathy today in between the raindrops (thanks, good friend). We both needed the air and exercize. I missed yoga cass yesterday because I was so stressed out before leaving the house that I neglected to prepare myself lunch. I figured I'd faint during class, so stayed back to eat cafeteria food instead. It was a wise choice, but I'll be sure to prepare my lunch on Monday evenings from now on because yoga class is too precious to miss.

I realize now how true it is that lost sleep can never be made up; I am more tired now than I was yesterday at this time. I think that a more relaxed day allowed me to find time to feel my body’s true physical state; exhausted is an understatement. I’m off to bed now to try and regain some lost energy for tomorrow’s long day; work from 8:30 to 2:00 followed by a 2:30 rendez-vous with Gilly at the Jewish. My mom will drop Gilly and Elizabeth off at 1:30 for physio, and I’ll take over at 2:30 for the pre-Kavan blood test. We have a scheduled visit with the CNR crew at 3:00 and Dr. Kavan at 3:40. A whirlwind of medical intervention in one fell swoop.

I am guessing that Dr. Kavan will take some time to consider the pros and cons of continuing with Temodal, but he may order some tests before making his final verdict. My instinct tells me that it is too taxing, but my mind is open to at least listening to and trying to understand a potentially contrasting viewpoint.

I assume Thi will report on Gilly’s diminishing strength, particularly on his right side, but I do not think they will find a weight loss; we’ve yet to see. His deteriorating motor control and balance will be discussed as well, I assume. I cannot imagine what they will say, but I’m hoping they’ll continue to believe, as Thi has up until our most recent visit, that physio still has its merits and is a worthwhile endeavor.

The OT at the Neuro who is replacing Robert called this afternoon to say that she will have Maria, the neuro-oncology nurse call me tomorrow with some suggestions. I’m not holding my breath, because this is the woman who never called back when I was concerned about Gilly having been in contact with pneumonia a few months ago. Who knows? Perhaps she will redeem herself and follow through this time. She was one of the reasons I decided to switch from the Neuro to the Jewish. I suppose she deserves another chance; I’d rather have ample information from a variety of sources at my disposal. The OT from the CSSS will be here on Friday morning to make further suggestions.

Gilly is slightly less tired than he was yesterday. Gilly's friend Emma from our favourite fruit store sent him a care package of fruit that he loves (mango and fresh figs) this evening. He devoured 2 full plates, and he looks content as can be. His appetite is still there, especially for certain foods. Fruit is always a hit.

Again, while watching t.v. this evening he laughed aloud. I asked if he can see better. He answered affirmatively (although his answers are not always accurate). I reminded him that we are scheduled to see the eye docotr on friday afternoon. I wonder how the optometrist will manage conducting a proper, accurate eye exam now that Gilly's responses are difficult to comprehend. I guess I'll find out on Friday.

I am taking a blog night off tomorrow; I have a date with my friend Trudy. I’m allowing myself some much needed respite in hopes that the old adage is true; a change is as good as a rest.

A penny for your thoughts

2006-11-07T19:29:00.000-05:00

Last night was rough on many fronts. Trips to the bathroom during the night are becoming increasingly dangerous. The 5:00 a.m. fall did me in. I managed to get only about 15 minutes sleep during the night, or so it seemed.

I called Brad to say that I need ideas for night time safety. I cannot work all day, care give all evening and be up all night. He came up with some suggestions, and promised to arrange for the OT to come by as soon as possible. He admitted that there is a shortage of OT’s at the moment. He insists that an OT is the right professional to help me out of this mess. I asked if I ought to call Robert who assessed Gilly at the Neuro, since he offered to receive my calls anytime (and I ignorantly wondered why I’d need to call; now I know the answer). He suggested I give it a try.

The secretary informed me that Robert will be away until next week, and that she’d love to have someone else address my queries, but there’s a shortage of OT’s right now. Is there an echo in here?

If I had the time, I’d campaign for more OT’s in our system. They are valuable professionals, but apparently hard to come by.

I received a message late this afternoon from the OT at the CSSS saying she’d come for a visit this Friday. I thanked her profusely for speeding up the process. In the meantime, Gilly is thoroughly exhausted (due I’d guess to the 5 days of Temodal; the fatigue is usually cumulative over the course of the session, so I expect a day or two of excessive fatigue). This means he’s not going anywhere too quickly. I’m prepared for tonight; I have some necessary materials and Yaron promised to tag team when he gets home (it’s hockey night in Ahunsic).

I’m learning the importance of having a trained care giver. The woman who cleans my house on Tuesdays (Manuela) is not trained in this regard, and I have come to the conclusion that it is not safe to leave Gilly with her. She cares and is willing to help, but she’s terrified (I understand how she feels; it’s scary, especially when you know the person and what he was once like, as Manuela does). I will have to work out a different scenario for Tuesdays from 9:00 to 5:00, rather than maintain the tag team I set up. Veronica is not nearly as terrific as Margaret, but she knows what she’s doing. I continue to wonder how Elizabeth will fare. I have yet to line up the team players properly, but I’m moving in the right direction. I wish I had someone to stay awake all night and watch over Gilly, but this is overkill. I feel that such a situation would impinge upon my privacy.

Thanks to John, Duds and Yam, the shower bars are installed and make a big difference to bathing safety.

I hope with whatever reserved energy I have left, that Gilly pulls out of this slump somehow. Life is changing for us way too rapidly; I’ve hardly time to catch my breath before a new development occurs. We’re due for a string of uneventful days ahead. We must believe that this is possible. We were sitting downstairs together watching Friends about an hour ago. I rarely sit down in the basement, but I feel safer when I’m close by, so I decided to try to relax by napping to a show I like (I can never fall asleep to one I don't like, for some strange reason). Usually Gilly watches Star Trek or carpentry shows…we do not have the same taste in T.V. shows, and never did, but he said I could change the channel. I was drifting off to sleep when I heard him laugh out loud. This to me is a good sign. There’s more than meets the eye (or ear), I’m sure. I wish he could be given back the gift of gab so he could tell us what’s on his mind…

Ch-ch-ch-changes

2006-11-06T18:26:00.000-05:00

Veronica arrived on time this morning. I had written out all instructions and details just in case she showed up late, because I must get to work on time. I reviewed all the [now seemingly] unnecessary paperwork with her, introduced her to Gilly still deep asleep and dashed out the door. I organized every minor detail, except forgot to mention that a gentleman was scheduled to arrive at 1:00 to treat Gilly’s feet, and I neglected to leave the cash payment. I received a call from Gilly during my seminar, quite a coherent one, I might add, informing me of my error. Thankfully, Yaron was at home and had the $ for the fellow, or I would have had to drive to Montreal North to give it to him. Oops! Not so serious, but a royal pain.

On the way in to the college I received a call from Denise explaining that Margaret is not available this week. She said she’d find someone else for this week. More writing down instructions; I will not be home long enough to give Elizabeth the rundown at 7:30 a.m. on Wednesday. Coordinating Gilly’s affairs is very complicated! It’s a good thing I saved today’s paperwork. I can probably re-use some of it.

Gilly is none the worse for wear, but I am a basket case. I will go to bed with my books sooner than later to try to organize my materials for the next couple of days and fall fast asleep without delay…oh never mind that idea. I have to stay up to administer the Temodal. Yaron has hockey.

I did not have the same good feeling about Veronica as with Margaret. I wonder how Elizabeth will rate. Veronica dislikes dogs, and showed some fear. If she’s afraid of Liylah, she’s really scared because Liylah is a gentle giant. I understand, because I myself grew up with a fear of dogs, but Liylah is part of this family, so she must be contended with. She’s allergic to smoke, and Gilly indulges now and again in the garage (what can I say? He has so few pleasures…). I’d want her close by, but she cannot be near the smoke. It may take awhile before the right characters are chosen, and the role may change over time; it’s hard to say how soon, at what speed, and in what direction.

Yam just called and he’s on his way over to complete the railing installation. Things are cooking with steam on that front.

Thanks y'all

2006-11-05T19:11:00.000-05:00

Two nights out in a row, and no mishaps. Pretty good track record!

Friday night at my mom’s was warm and loving. I took a picture of Gilly in his new fur coat (couched by the devoted duo, Tamara and Max), courtesy of Steven. I trust he’ll remain warm all winter long. It may have been overkill for Friday night, but he sure did make an entrance.

The movie was nothing special, in my estimation, but the event was. It’s been a long time since Gilly has been my date for a movie on a Saturday night. I’m proud to say that after 24 years of marriage and what with all that’s happening these days, we’re still dating. Yaron dropped us off and the Zigman’s took it from there. I think the fur coat is the trick; we were treated like royalty.

Today was a busy one. I provided breakfast in bed at 10:00 and gave in to his need for more sleep. The Temodal does make him feel tired, but strangely only by day. At night, he prowls around lie other nocturnal creatures. He wanders around downstairs, refusing to come up where I can monitor his safety and still get some bedrest; this prevents me from sleeping. If you come across me snoring away one day on a park bench, you’ll understand why.

I tried and tried with all my might, but could not pull him out of bed until after 2:00. Thankfully, Kenny called to say he’d be dropping by; that was just the incentive Gilly needed. While he visited with Kenny, Rosanne and Sharon sauntered in as well. Moments later, Duds and Yael arrived. Duds got started on railing construction for the stairway while Yael crawled into my lap for a cuddle.

The possibility of a walk was rained out, but my two lady friends dragged me out for some respite; we went for coffee instead. Tamara came by to supervise her dad in my stead.

I returned home an hour later to find Yam helping his brother complete the installation. They’ll finish the job tomorrow; a special drill is needed to put bars in the bathroom. The renovations were done with benevolence, loving kindness and respect for Gilly’s physical as well as his emotional needs. He approved the ‘look.’ Duds and John made every effort to match the style of railing to the existing charm that Gilly created according to our Montreal Schwager taste.

How lucky we are to have such devoted family and friends. Without them, I’d be a zombie. There’s more to do than I can handle on a physical, emotional and spiritual level. I continue to be brave and strong most of the time because I have so many shoulders to lean on. I do not even have the time to call in all the offers for help of every kind that I have received of late. Many thanks to all, and I do mean ALL!

Out on the town

2006-11-04T19:26:00.000-05:00

No time to write, because believe it or not, we’re attempting to go out to a movie this evening, Gilly et al. We are planning to see Robin Williams become president! It’s all very experimental, and Gilly is willing to act as guinea pig, so I’m crossing my finger and hoping for the best. Yaron, our new chauffeur will drop us at the theatre, and the Zigman’s will give us a lift home. They plan to park underground so that the car will be warm and cozy. Wish us luck!

Divine intervention; Miracle on Korczak Crescent

2006-11-03T18:27:00.000-05:00

I had an opportunity to attend to my own work for school today while available to receive necessary personal calls towards Gilly’s ongoing care. It was a productive, calm day. I believe that Steven’s divine intervention last night in partnership with Yaron had something to do with it; I slept like a log for short intervals, but managed to fall back into a deep sleep after each interruption. Gilly was in good hands during the first Temodal evening; my energy level received a boost. Thanks guys!

Brad called with the final verdict; we have been granted 8 hours a week of care giving (as opposed to the 2 hours we originally had in place). 1 hour is on hold because there's a funding problem at the CSSS, but as soon as it clears, the hour will be applied to Gilly's care. Veronica, from a company called Paraide, will come on Mondays from 11:00 to 3:00 and Tuesdays from 2:00 to 5:00. I rearranged the hours for physio, so Gilly may be accompanied by Veronica on Mondays and Margaret on Thursdays.

A representative from the transport service I applied for called today to ensure that I received the information package. I explained that I haven’t had the time to look at it carefully, but I plan to at this point. I would not have sent him on transport alone, but now that his caregivers will accompany him to physio, we can activate this system as needed. It is a service offered by the city bus system, and so it costs a bus ticket a ride. I think that’s more than fair; it’s wonderful.

I received another important call; Louise from Lethbridge called to set up an appointment for an evaluation with their team of experts. She had called yesterday and spoke to Gilly. She asked if he is aphasic. I explained that he has not been formally diagnosed as such, but Robert said he believed it’s expressive aphasia. She asked several questions and determined that the case requires immediate action.

He will not be placed on a waiting list. Their clinic is held on Mondays and Thursdays. They’re booked solid this Monday so she wanted to have us come in on Thursday for two hours. I explained that this is the day we are scheduled to see the oncologist. Also, Gilly missed physio yesterday because of the delay in making the Temodal decision; I could have arranged for him to go in the end, but it was way too complicated being that it was Margaret’s first day and Steven was in town. He started Temodal 2 days late, so he’ll still be on Temodal on Monday, so I’ve cancelled physio. My instinct tells me that canceling next Thursday’s appointment for physio as well (meaning he’d not have physio for two full weeks) is unwise. 2 activities out in one day is more than enough, so I asked Louise if it can wait until the following Monday. She was adamant about a Thursday appointment; she said the team on Thursday is very experienced. She harped on the fact that the case is very complex and requires immediate expert attention. I was duly impressed with her genuine concern. She promised to call me back with an exact time, but we agreed it would take place a week from Thursday, and that I must attend.

She candidly asked, “Do you think your husband is capable of learning?” I wondered out loud why Robert would send us for an assessment at a rehabilitation center if this is not a possibility, but I admitted I do not know. I hope, with every fiber of my being, that he can relearn some of what he’s lost, and that he could learn a new past time to improve his quality of life in general. She agreed. When she signed off she wished me courage. I didn’t bother to say, “I have no choice.” Margaret led me to understand that I do; I have control over my reactions and responses. I will continue to be as brave as I can be, even when dealing with less than comfortable aspects of this whole situation, most of which revolve around the need for me to take on a role that differs in many ways from the role of ‘wife’ I once knew.

We’re on our way to Grandma’s for a pre-Hanukah gathering, since she’s off to Florida soon and will not be here to celebrate when the holiday appears on the calendar. Surrounded by family, latkes and dreidles, my spirits will surely rise with renewed hope for a miracle. Happy Un-Hanukah to all.

We shall overcome

2006-11-02T20:12:00.000-05:00

Her wings are beginning to show. So far, Margaret received high ratings from Steven (who is here for a visit), Yaron and Gilly. She was here when she said she’d be, she is resourceful, flexible, a self-starter, capable and very pleasant. The only drawback is that she cannot get here before 9:00, so it’s a problem on Wednesdays, because we leave (or at least try to) by 7:30. This is being addressed, and hopefully a solution will be reached by tomorrow.

Gilly had what I’d call a special day, even though I wasn’t here to witness it. He adores Steven, and his dear friend Freddie came along too as an added bonus. The change was just what Gilly needed; in fact it did us all good. I was able to be away from the house (albeit working in between pocket buzzings) knowing he was in loving, caring and capable hands with Steven, Freddie and Margaret at his side. While the men folk went out for lunch Margaret stayed back and attended to my laundry and dishes. I think I’ve hired myself a wife!

Erika got back to me to this morning and relayed the message from the oncologist; he felt a blood test should be taken before attempting to go back on chemo in light of the symptoms described. Luckily, I was able to have Steven take Gilly to the jewish to accomplish this, with Margaret in tow. She knows her way around the hospital, and managed to have him go up, have the test and come down within 10 minutes (according to Steven). Mission accomplished, and I was spared the hassle of coordinating this procedure tomorrow without Margaret around.
It turns out that his blood is perfect (as it has been all along) so we are advised to go ahead and take the Temodal, and consult with Dr. Kavan next week regarding possible change to the protocol. I’m still not convinced I should put him through it, but Erika assured me it will not do him any harm.

Yaron has his cell phone set to ring for the anti-nausea round at 9:15 and then the Temodal at 9:45. I’m going to bed! I am thoroughly exhausted. I was up all night watching Gilly mill about; first downstairs, and then, after I insisted he come up, he kept getting out of bed to use the washroom. I drifted off for a nap and was awakened when he fell at the foot of our bed. Yaron came running out of his bed when he heard the thump. Gilly got right up, unperturbed and kept on going. Everyday brings new challenges our way. They seem insurmountable at times, but so far we have managed to overcome every obstacle.

Touched by an angel?

2006-11-01T20:13:00.000-05:00

Hopefully, today marks the end of scrambling for coverage; Margaret begins tomorrow. She is scheduled to be here on Wednesdays and Thursdays from now on. Brad is working on changing the CSSS caregiver’s days to Monday and Tuesday, even though there will be coverage (Yaron on Mondays and Manuela who cleans my house on Tuesdays).

He is also working on having someone come in to bathe Gilly once a week, which ought to help a great deal. I discovered that a lifting bar (I forget what it’s called exactly, but it’s a gizmo designed to help him lift himself up to a standing position) is mandatory if we are to have the CSSS come in and bathe him. Now I have to decide exactly where he will have his shower, before I go ahead and install a bar. The bathroom upstairs seems too small, but the one downstairs has glass doors, which will need to be removed. I may need technical assistance for this, although I may be capable of figuring it out myself. This will be Friday’s project. It seems reasonable to set up the bathroom he always used for showering as his permanent spot. I think he would prefer this, and it would make it easier and less painful, since I do not pass that bathroom as many times a day. However, it means going downstairs to bathe. I must consider all the angles before installing anything permanently.

The CSSS received Robert’s report today from the O.T. Dept. at the Neuro (amazingly swift). He sent it on to Peggy for interpretation, since it is written in O.T. lingo. I’ll hear back from Brad on Friday regarding all the details.

I mentioned to brad that Liylah’s heartworm pill is due this week, and so must Gilly’s B12 shot, since they coincide. The original nurse has been off on a personal leave for a couple of months now (her dad is ill) and the replacement is now on sick leave. He checked on the situation and arranged an appointment for Friday. Good thing Liylah’s heartworm reminder is on my calendar.

I received a call back from Erika, Gilly’s primary oncology nurse today at noon. She only received yesterday’s message today. I do not have the opportunity to be more persistent, since I make calls between classes and meetings, and what not, so I probably sip through the cracks. It may be in our best interest for me to become more of a squeaky wheel, but making the one call is overwhelming enough during the work week.

It seems that Dr. Kavan is away on vacation until next week, so he cannot answer my question. Erika said she’d contact the oncologist replacing him (I didn’t get the name) and get back to me, but I never heard from her. I held off on dispensing the Temodal for one more day. I continue to question the purpose at this stage in the game. It’s a quality of life issue, as I was advised early on in the game, and since Temodal is not curative, I’d like the experts to rethink the protocol. Why make him any weaker, or any more drugged up, or compromised further in any way? If the oncologist comes forth and explains that there is a chance that the condition will worsen (neurologically) before it gets better, then perhaps it’s worth the trouble. I simply want more information before putting him through any form of grueling treatment. Temodal exhausts him. He sleeps most of the time as it is…I wish I had answers.

I’m heading into yet another day waiting for the buzzing of a cell phone hidden in my pocket (on silent, of course, out of respect for the particular work environment I’ll be in tomorrow; day care center classrooms). I’ll be glad when I finally receive guidance from Erika.

On her way out today, Margaret marveled at how well I’m handling the situation. Countless people have made this same comment to me. I refute the claim each time, insisting that I have no choice. I either handle matters or fall apart. It’s that simple. She went on to say that some people she has come into contact with through her work with this agency manage the situation, but few exhibit as much apparent love and compassion. That was what really impressed her. Her explanation made me feel warm and fuzzy. I showed off our wedding picture (hippie style, as my children would say), and told her how I fell in love with Gilly the moment I set eyes on him, and that he asked me to marry him 10 days later. “That’s who we are,” I declared, “mutually devoted.” We spoke awhile longer, and I sensed that we shared a common philosophy. I hope my instinct is correct. I am operating on low fuel today, so I could be mistaken. Is she that angel I was expecting to grace our doorstep? Time will tell.

Nuts and bolts

2006-10-31T21:31:00.000-05:00

We’re making a bit of headway; Gilly took a shower in a seated position. He was willing, and thoroughly enjoyed it. I felt comfortable in that he was secure; one hurdle, umpteen to go!
He is beginning to use the cane. I find he is much steadier when he does, but he of course disagrees. He doesn’t have to be of the same opinion; he needs to use it. We’re moving steadily ahead in more ways than one.

Gilly showed an interest in hand exercises today. He seems to enjoy the therapeutic putty. I may get him interested in plasticine or clay one day soon after all. One of the exercises involves having him pick up small objects and place them in a container. I took out a drawer of bolts and he rose to the challenge, managing to place most of the bolts into the container using his weak hand. He actually seemed motivated to complete the task, which is unusual these days. I think I’ll try to get his hands around as many tools as possible in the name of exercise; he may take an even greater interest. When he finished his fine-motor exercises I suggested he sit on the ball for awhile to work on his balance. He looked at me with that, “What are you? Kidding?” expression and refused to cooperate. I have to parachute someone else in to get him hooked on ball exercises.

I called the primary nurse at the Jewish today to ask her to track down Dr. Kavan and find out if there’s any point in taking the Temodal this evening, in light of Gilly’s current condition. She never called back (perhaps because she couldn’t reach him) so I made an executive decision to wait one more day before putting him back on. I will try to reach the good doctor at the Neuro tomorrow, since I know he sees patients at the neuro oncology clinic on Wednesdays. Maybe my new found friend Denise can help.

We’re still scrounging for coverage everyday. By Thursday, all should be in order. We will meet Margaret at 2:00 tomorrow, and she is expected to begin on Thursday. Thanks to my mom, I can go off and teach tomorrow morning without fear.

The railings for the staircase are in the works. Hadar and John will come by one evening this week to take measurements.

So if all the pieces are falling into place, why am I so tired? I wonder…must be the time change.

So many questions, so few answers

2006-10-30T21:00:00.000-05:00

Getting Gilly dressed and out of the house today was like trying to pour frozen molasses, or so it seemed to me. I do not assist him with what he can do for himself, but it is difficult to resist, especially when the clock is ticking and we have an important appointment. His right hand is giving him a hard time; he hardly uses it at all. He has trouble lifting that same arm past his chest, as if it weighs 100 pounds. The situation worsens daily in this regard.

We arrived at the Neuro miraculously on time, and were ushered in to Robert, the O.T.’s office immediately. The assessment procedure took almost 2 hours. I had to leave at some point, because I didn’t want Gilly to see the welling up of tears in my eyes during the question period; Gilly is no longer aware of the date, his own age, etc. Robert was kind enough to ask if I wanted to leave. At first I refused the offer, saying I’ve heard it all before, but this time it was just too painful. Robert seems to know me better than I know myself.

The bottom line is that Gilly requires some further adaptations so as to retain is current level of independence in terms of self-care (which isn’t much to begin with). We were given exercises to enhance his deteriorating fine-motor control. Robert is requesting that Lethbridge (a rehabilitation center) service him. They will look into his language deficits there as well. He used the term Aphasia, but is not sure what is actually going on.

He also threw out the term Apraxia. I asked if he thinks this has something to do with his speech. We discussed his difficulties with motor planning. He is unsure if his speech problems have anything to do with motor issues.

He examined Gilly’s swallowing (food and drink) and discovered that the right side of his mouth is impaired as well. He provided some suggestions for eating.

He had a look at Gilly’s peripheral vision, and provided ideas for encouraging Gilly to turn his head and look to the right, so as to see what is hidden from his view (which seems to be the opposite strategy suggested by the optometrist at the MAB. Robert believes that with enough prompting and practice, it may become part of his repertoire; an automatic compensatory strategy.

He will contact our local CSSS and provide them with his report, which ought to spur them on to the next step; reassessing our situation and adding on or expanding services we are in need of at this point. He suggested that Brad help us to apply for a grant to subsidize our necessary home renovations.

Robert mentioned that he will see us every few months to monitor Gilly’s progress. He informed us that he works 5 days a week from 9 to 5 and is willing to see us at anytime. I’m not really sure what the nature of a visit at our request would be, since he does not do the actual ‘therapy’ it seems, but I intend to find out.

We went home for lunch and then it was off again; this time to Physio. Thi examined Gilly’s right side very carefully today. He said that the isolated muscle groups are still functioning, but coordination of movement is seriously impaired. He too used the term ‘motor planning.’ He suggests that Gilly begin using a cane, and urged us to continue attending physio sessions (which I for one am thankful we have). He gave us a few pointers for using the cane to support himself and prevent falling. i have been trying to get Gilly to use the cane for over a week now, but to no avail.

Gilly is rejecting the idea of using the cane, insisting on using only his left hand for everything, balking at my insistence to accompany him down the stairs and refusing to take a shower with the aid of the new transfer bench (but he did agree to look at it and try it out fully clothed; that’s progress, I suppose). The only battle I won today was escorting him downstairs this afternoon and then again this evening. He is becoming downright feisty (a familiar behaviour, but exceptionally hard to deal with in this case).

I have to wonder if the Temodal is doing any good. Is this what one would describe as ‘controlling the disease’? I think not. We will see Dr. Kavan next week, at which time I will ask him to re-evaluate Gilly’s medical status. There is another MRI scheduled for December 12th. Perhaps it can be done sooner. Would changes of this nature show up on an MRI?

On the ball; No time to weight

2006-10-29T22:59:00.000-05:00

Try as I might, he would not permit me to watch the movies downstairs, so in the end I took to my quarters and watched one disturbing movie after another last evening. I’m not sure if it was the content, or my mood, but I increasingly felt spooked. I thought I heard someone creeping around the kitchen just as the second film drew to a close. I wondered who could be causing Liylah’s tail to wag with such energy. She loves everyone, so I'm not so sure she'd have the sense to growl at a prowler. Was I just imagining things? I decided I better play it safe and have a look. I bumped into Gilly and let out a scream. It was 10:45 P.M. He never comes upstairs that early. I felt my heart racing for quite some time afterwards.

My jumpy reaction is a sign I ought to pay attention to; stress is working its way through my system. It isn’t as easy to escape through Hollywood as I thought it might be. I must find ways to relax; take the edge off.

Debbie called around 11:00 A.M. this morning to say that she and Fred would like to bring over some brunch. They arrived at 1:00 with all the fixings. My mom came by too, followed by Shelley and Donnie later that afternnon (surprise out of town friends). We spent a relaxing, social afternoon. Gilly remained in the living room throughout, quiet except when encouraged to take part in the conversation. I enjoyed the fact that he hung around instead of escaping to his favourite spot.

Gilly wavered in his decision to attend Yaron’s hockey game this evening, but finally decided to stay home with his good friend Marvin while Sharon and I went out for a bite. The evening put a nice topping on our pleasant and peaceful Sunday.

There’s nothing as precious as being surrounded by good friends and family during trying times; it’s downright healing. I’m somewhat regenerated, and ready to face a new week; O.T. tomorrow, Temodal starts Tuesday, interview home care worker Wednesday, try out new person Thursday…let’s not forget the fact that I still have to complete adaptive measures I’m onto it; still gathering information on best case scenario) and oh yes, I do have to work as well. I still feel there ought to be more hours to the day and days to the week.

Gilly’s right side is significantly weaker than before, but he agreed to use the ball today and lift some weights as well. I hope we can build his strength back up again with a resurgence of his exercise routine. It was way easier when I was home during the summer. Today’s compliance on his part is a good sign.

Double feature

2006-10-28T17:03:00.000-05:00

Gilly spent a quiet, rainy Saturday at home. He seems comfortable in his surroundings, and strangely content, considering all he contends with.

I’m about to settle in next to him for a double feature. He answers “no” to everything or “yes,” depending on the first respond to my string of questions, so I’m not certain he wants me down there with him in his kingdom, but I intend to give it a try. I’ve got nothing to lose.

Taking charge

2006-10-27T17:19:00.000-05:00

I know I sounded gloomy last night. I felt that way then, but today is a new day. I have made some decisions and taken action. He is now 100% safe for showering, but is annoyed that I purchased the adaptive equipment. I don’t blame him for feeling this way; it irks me too, but I can now have piece of mind and he will get used to the equipment soon enough. Yaron already installed the new showerhead, and we’re good to go. I made sure to get the padded bench, because unlike me, he has no meat on his tush. He never did, but he used to have muscle.

I have hired someone to come in and fit some railings along the walls of the staircase leading to the basement. Gilly’s more than a little ticked off with me on this front. To demonstrate my understanding, I solemnly promised I’d respect the décor; after all, he fashioned the whole look using his artistic eye, creative mind, golden hands and lots of time and elbow grease. I’m just glad he expressed how much he cares, and that he actually can show me that he realizes what’s at stake. I find it quite interesting that he says he can’t see a thing (although he means he can’t make sense of what he sees), yet the visual beauty of his handiwork continues to be a top priority. This is a good sign!

We will go over to Rona together tomorrow to choose the nicest wooden (sturdy) railings we can find. I’ll have to use some ingenuity to make them slip proof with as little compromise to aesthetics as possible. I will buy some slip proof tape for the stairs as well, again with the utmost respect for the work he put in (truly a labour of love) to strip and stain them. I’m confident that we can create a safe staircase while retaining that woody charm. His basement is his haven, but we like to have him upstairs too. Accompanied or not, he will surely insist on using this staircase on a daily basis, so I have to get busy immediately, if not sooner. I’ll just do it in my spare time...

I’ll be with Gilly on Monday, and there is always someone here on Tuesday, so the first part of the week is covered. I will interview someone on Wednesday afternoon, and hopefully try him (or her) out on Thursday. I haven’t made a commitment, because I still have to hear back from Brad as to exactly how, if at all, the CSSS services could be expanded upon. I am also accepting suggestions from people who know of experienced care givers. I’d like there to be consistency that can be built upon or reduced as the need (or lack thereof) arises. It must be a good match, of course, so that Gilly feels comfortable and is safe. The person has to show some sort of initiative as well, so that Gilly could be stimulated, but not overwhelmed. Above all, his needs and wishes must be respected. So what I’m really looking for is an angel, I guess. I may be crazy, but I actually believe I will find one.

It is off to Susie and Joey’s for Shabbat dinner. I look forward to it.

Rough road

2006-10-26T20:18:00.000-05:00

Today was spent gathering information and trying to confirm appointments. It seems that the CSSS can only provide the type of care we’ve been receiving, so I have to look elsewhere for more comprehensive coverage (at least 2 full days a week for now; I think we can wing coverage the rest of the time). I made significant progress in my search for appropriate services, and hope to have something in place by Tuesday. I will also need to make several adaptations to our home to decrease the possibility of Gilly injuring himself.

Getting Gilly up and out of bed this morning took an enormous length of time, but I was not scheduled to go anywhere out of the house for work today, so it was not as frustrating for me.

We arrived late for physio. I stayed for the session. Thi confirmed that Gilly’s balance has worsened, but contends that if he religiously uses the exercise ball at home, he can recoup at least some of what he’s lost. He refuses to cooperate with me, though, when I try to have him sit on the ball at home. I told Thi that he will have to move in with us, since Gilly happily complies with anything Thi asks him to do. I hope to have the person I plan to hire for those two days be shown how to help Gilly do the exercises. Thi suggests I bring the person in for a session, and he will evaluate whether or not this is feasible. Gilly needs to be spotted very vigilantly at this point.

I called Sandra from the O.T. Dept. at the Neuro today to ask what gives. I hadn’t heard back from her as to a confirmed day and time for Gilly’s appointment. We last left it that she would contact me when she receives the referral from Dr. Kavan. Lo and behold, nothing has come forth as yet, although she claims to have left messages requesting that this be attended to. She explained that it’s not legal for an O.T. in her department to see Gilly without a referral; she suggested I call the Neuro Oncology Dept. to get some answers. I hung up and immediately left a message for Denise, the wonderfully kind and helpful coordinator who assisted me during the MRI CD caper. Moments later I received a call from her assuring me that the referral would be sent tomorrow, and that we are to keep Monday’s appointment. I left Sandra a message to that effect, and asked to let me know what time to come in on Monday.

Gilly wasn’t nearly as hungry as usual today, but fortunately I managed to convince him to eat most of what I gave him. He seemed more observant of his surroundings, and his answers, although garbled, seemed on topic. He was very low key (in relative terms of course; Gilly used to be incredibly energetic and enthusiastic). I do not usually spend the day with him after physio. I suppose it wears him out, and this is what I witnessed.

Gilly no longer walks downstairs alone. I forbid it. Instead, he follows along slowly behind me. I will have supports installed, but regardless, I cannot let him descend alone any longer, even with supports. He is just too likely to fall; it’s a long way down!

My heart is heavy. I cannot believe we have reached this stage of our journey; we have arrived at a particularly dangerous curve in the road. Transitions are rough. Emotionally, I’m not ready to be here, but realistically, there is no choice. It’s been nearly ¼ of a century since we signed on as man and wife. I never would have guessed that my loving, devoted, hard working, creative, dependable, inventive, talented, sociable Gilly, at age 53, would have so much trouble with mundane tasks we all take for granted, like speaking and walking down the very staircase he stripped and stained with his own capable hands just a couple of years ago. It is mind boggling, isn’t it? Life is so precious. So many things that seemed important in the past have paled in comparison to matters surrounding Gilly’s daily challenges.

Return of the blog

2006-10-25T18:03:00.000-05:00

Well, folks, I’m back in business. It seems to have been a Sympatico problem. We were not the only ones affected. I’m relieved to have the service back, because I cannot work at home if I am unable to remain in contact with colleagues and students.
I have some serious concerns about Gilly’s status, and I plan to contact Brad tomorrow to see how much more time the CSSS can offer us in the way of care giving. He is still relatively unsteady; last evening he fell in the bathroom twice. I was home, luckily, but this is not a good thing. I need to ensure that he has much more coverage.

His responses to questions make no sense. Last night he was sitting on the couch and I was giving him his medication. He started to put his shoes on. I asked, “Where are you going?” He replied, “To Jerusalem.” I thought he was kidding, but he seemed not to be. This is an example of the type of exchange we often have these days. It is heart wrenching and downright frightening.

His movements seem slower. It takes what seems like forever for him to do anything; dress, sit up in bed to eat, take medication, finish his food…he does very little, but whatever he undertakes is an extremely long procedure. I feel as if the only way to get out of the house and to arrive at work on time would be to get up at 5:30. My usual 6:30 wake-up does not allow me ample time to prepare everything and then wait for him to get up and eat. If I don’t give him breakfast, he’ll miss a meal.

I begin my day feeling rushed, which creates stress. It’s not Gilly’s fault, yet I find myself begging him to respond, explaining that I cannot be late. When I arrive home, a new set of tasks await me; I’m just too exhausted to get some of the morning rituals attended to the night before (such as making lunches). I fall into bed as soon as supper is over, and try to drift off to sleep, but my mind is running on overload; my night’s sleep is shorter than it ought to be.
I will be home tomorrow instead of Friday, and I plan to attend to securing better coverage for next week. Yaron and I have been playing tag team for the last couple of days. Yaron’s new driving status makes an enormous difference. He can do some messages for me at the drop of a hat.

Tamara is here for us whenever we need her as well, and Gilly absolutely loves her presence (as he does Yaron’s, but hers is more of a novelty). On Sunday night she came by while I was out at a fundraiser and whipped him up a delectable meal. She left a note saying that he ‘ate like a pig.’

Gotta get dinner on the table for my very hungry 18 year old. Spaghetti and meat sauce (with surprise meatballs; he doesn’t know I put them in yet. Shhh, don’t spoil the secret!). Gilly dislikes pasta, so it’s hamburger night for him.

Experiencing technical diffiulties...please stand by

2006-10-24T10:11:00.000-05:00

Sorry, my devoted audience, but I do not have access to Internet at home, and I don't know why. I've had technical diffiuclties since Saturday night.

I am at work, so no time for a whole megillah, but I just wanted to report that all is pretty much the same. No drastic changes...Gilly is proceeding along the same path.

As soon as I get to the bottom of the problem (Internet, that is), I will resume periodic postings. For now, I'm on a blogger hiatus.

I cannot access my McGill email either until all is solved. My Vanier one is webmail, so I can retrieve messages at work from Monday to Wednesday.

One great piece of news: Yaron now officially has his driver's liscence!!!! Finally, someone who can run out and do some messages for me on a whim...I needed this void to be filled big time. He's still at the stage where such messages are fun, because taking the car on his own is a novelty (as of yesterday).

Love potion #9

2006-10-21T09:05:00.000-05:00

My Shabbat guests departed last night at about 11:00. I was too weary at that time to drag myself over to the computer to post an entry. It is now Saturday morning and I have regenerated my battery. I’ll have to go back to Thursday night (or the wee hours of Friday, really) to put yesterday’s fatigue into perspective.

Liylah has learned that I am the lightest sleeper in the house, so if she needs something during the night, I’m her target. I grudgingly climbed out of bed and let her out at 3:00 a.m. in response to her incessant whining. I crawled back into my cocoon and waited. I checked on her several times, but she is master of the yard now that she doesn’t need to be tied (due to the fence), so she prances about for longer periods. I eventually drifted off to sleep. Yaron let her in at 8:00 a.m.! I felt awful. She never barks (except in the country, and mostly at the waves) so I did not hear her make a plea to be let back inside.

“She smells like skunk,” Yaron informed me, and scurried off to school. My day to work at home transformed itself into a day to solve a smelly mess. I myself have no sense of smell, so if Yaron hadn’t mentioned the skunk business, my house would probably have reeked after a while.

I understood that Gilly was not be up to helping me meet the challenge; I asked him what he and Gittit used when Lilylah was in the same smelly situation last April, and he said “water.” "Yeah, but what else?" I wondered. I wracked my brain to remember and searched through all the logical places to find remnants of the product they used, but came out empty handed. I called the vet to see if they sell something I can use. The secretary said that no product does the trick as a well as a home remedy. She gave me instructions for making the following potion: 4 cups 3% peroxide, ¼ cup baking soda and 1 tsp. dish washing liquid. Aha! I remembered that they had used peroxide after a few unsuccessful tomato juice baths. I had some, but not enough, so off I went out to gather necessary supplies at the pharmacy, and to pick up meds at the same time. I always try to accomplish more than one task at a time so as to maximize my time.

Liylah was not very compliant when invited into the tub for her bath. I had to lift her and place her inside, which was no easy feat. She's heavy! It’s amazing what physical strength and skills one can muster up in a time of need. As Susie puts it, “Trustez-moi,” this would never have been even remotely close to ‘my job’ in the past. Necessity brings out that survival instinct; some days I feel I can move mountains. Problem is that when it’s all said and done, I crash, and so does my body.

Liylah remained still and cooperative throughout the affair, but you know how dogs shake when they’re wet right? Well, her 5 hours spent outdoors left some mud caked into her paws, so the entire bathroom was eventually wet and mud streaked. On top of it, the bathtub was the hairiest mess ever. Needless to say it took me hours to shine her up from head to toe, clean the bathroom and wash all towels and her bed so as to rid the house of smells, which I could only imagine, since I can’t detect them myself. I tend to err on the safe side for this reason.

When I gave her the 'done' signal, s he jumped out of the tub by herself with ease; where there’s motivation, anything is possible.

By the time I sat down to do my work, it was 1:00. Gilly was enjoying the brunch I insisted he wake up to eat (oblivious to the reason for my exhaustion even though I relayed the story). He looked up and asked me to go out and buy him some cigarettes (a nasty habit that I cannot deprive him of since he has so few pleasures in life these days). I wondered at this point if I was being filmed for Candid Camera. I made an appeal to allow me some time to get something done for myself (sounds so selfish, but my work haunts me until its done), reminding him of the morning’s incident, but there was not even a flicker of appreciation for my situation in his eyes. I said, “I guess you feel like a sitting duck, having to ask me to do this sort of thing for you?" He nodded in agreement. I took a moment to reflect on just how much he’s had to give up, and decided that he deserves the favour regardless of my circumstance. I am strong and able, and this is what they call 'for better or for worse.' so I owe him the respect.

I made the trip worthwhile; I went off to the fruit store across from Tamara’s apartment. The woman who owns the store is Tamara’s landlady. She sells sweet, juicy pineapples for $2.99 (the cheapest I’ve seen them in the city) and Gilly adores fresh pineapple. I siezed the opportunity to buy the supplies for my contribution to Shabbat dinner. I told the Korean store owner that her produce is fresh, delicious and reasonably priced. She thanked me and explained that she is a nutritionist and believes strongly in the health benefits of pineapples. If I recall correctly, she said that they have anti-inflammatory properties. She went on to tell me that she is a trained nurse, and provided rich details of her practice in this field years ago, which spanned several countries.

I took notice of all the oriental health products she sells on shelves behind her. I told her about Gilly and asked if she knows of a good Chinese doctor. She gave me a name, address and telephone number, and I recognized that the street name was the same one that someone else mentioned. I left with produce, information and hope for alternative possibilities, but no cigarettes. It was pouring rain and downright chilly (it actually turned to snow not long after), but I forced myself to make the final stop and return home with what Gilly asked me for (and some home made Sushi for my own lunch to boot, which turned out to be scrumptious).

I managed to speak with P at the CSSS regarding OT, and she confirmed that what I am looking for is not a service that a CSSS can offer. She promised to check out who in the city would be able to provide Gilly with expert assistance, adapted to his particular needs.

Moments later I received a call from the Neuro. Denise, the neuro oncology coordinator gave me a number to call to arrange for an OT consult. Now it seems that all we’re missing is Dr. Kavan’s referral, and the appointment will be set. Once they chase him down, we will be contacted. The appointment will most likely be made for Monday, the 30th at the Neuro.

Gilly’s medical condition remains the same, but I notice more and more that his memory is fading. I do not fully understand the pattern; sometimes he surprises me by remembering things that I forget, but more commonly he has serious lapses. For example, he seems to have no recollection of having been in the hospital last weekend.

He doesn’t finish sentences; his bizarre statements / questions / responses have dissipated pretty much, but not completely.

He needs reminding (and a great deal of coaxing) to care for himself, but still manages independently yet exceptionally slowly (eating, shaving, dressing, and so on).

The situation is far from static; we need to keep a close eye on behaviour changes, but I am beginning to understand how very little control there is over the situation. The tumour plays havoc with his cognitive functioning in complex ways; the medication seems not to be the cause, although still, anything is possible. One day at a time is how we have to approach decision making, and so life is perpetually up in the air for us all.

One thing is for certain; love, affection, respect and devotion is the only ‘concoction’ that never creates negative side effects, so we’re just going to give him a huge dose, as many times a day as we can. Even though our health plan does not cover this, 'love potion' is the best medicine.

Status quo

2006-10-19T20:36:00.000-05:00

No changes today at all.

Chicken (Gilly’s suggested title)

2006-10-18T20:08:00.000-05:00

Gilly spent a fair bit of time alone today, and all went well. We were frequently in touch by phone; our conversations led me to believe that it would be safe for me to remain at work to complete some tasks (I’m still miserably behind, but I see the light at the end of the tunnel. If life doesn’t get in my way, I’ll be home free by Saturday). Gilly urged me to stay and finish up, so I did. It was a good choice.

I tried to engage Gilly when I returned home this afternoon. I asked him to choose some dancing music (which he did) and suggested we dance or move to the beat; just even move a bit to the music. I believe that moving to some very simple dance steps could potentially awaken the passion he has always had for dancing. He agreed, but refused to follow through. I wanted to get him moving just a tad in a fun, pleasant way, but this was not to be. I went to Plan B; I tried to interest him in a craft, but he balked at any idea I put forth. I begged him to take a short walk with me but he flatly refused.

I have oodles of work to do at home too (of the house and school varieties), so after 3 strikes I stopped asking, took a deep breath, and used the time effectively. I wish I could find anything to capture his interest.

He seems to live vicariously through others. Yaron had a few friends over last night to watch the hockey game. Gilly seemed tickled pink to spend time with them in his favourite spot. I cam down to say goodnight, and asked who was playing. He didn’t know (or presumably care). He was simply basking in the ambience of ‘guy’ talk and sports sounds.

I served chicken for dinner and Gilly polished a whole breast off in no time. I was taken aback. When I asked him what to call this evening’s blog posting, he answered, “chicken,’ but couldn’t explain why. I said, “Maybe I’ve finally learned how to cook,” and he laughed in response. I suspect his taste has returned to normal, but it’s hard to say for sure; he doesn’t have the descriptive language to accurately tell me.

One more day away from the house, and then I have the chance to work from home. The week is more than halfway done, and we made it unscathed. I was relaxed enough to actually enjoy teaching my 2 classes this morning. That’s progress, because by Tuesday I was so overwhelmed I couldn’t imagine how I’d make it through Wednesday. I’m actually looking forward to a satisfying day downtown tomorrow supervising students in day care. I have the unique opportunity to do my work surrounded by children; this is always a pleasure for me.

Moving in the right direction

2006-10-17T20:24:00.000-05:00

All continues to go well; Gilly attended physio, and apologies were made. The staff at the desk and the replacement physiotherapist, Natasha, promised that now that they have the information (instructions to call me with any changes), this sort of thing will not happen again.

Appetite remains good, reasonable words are slowly returning to his repertoire, and his mood is good. Other than erasing the whole health situation, who could ask for more?

I received a message from the CSSS regarding OT, so I will follow-up ‘in my spare time’ (a well used facetious phrase for me these days).

I’m thoroughly drained, but not in a panic mode any longer. My head’s screwed back on, but it needs tightening; I’m feeling kinda droopy. Gilly, on the other hand, seems none the worse for wear. He’s fragile in some ways, but resilient as ever in others. His constitution is basically tough; I hope he continues to muster up the strength to bear the discomforts.

He continues to refuse ‘babysitters’ for the couple of hours he remains alone during the day, so Sheryl remains on call, but he will spend the morning alone tomorrow. It’s been working fine for now, so the amber alert is on, but not flashing.

Campaign season

2006-10-16T18:12:00.000-05:00

Gilly managed the evening much like any other one of late. It seems we have our man back, except his use of words is still tricky. He asked Tamara if she had her ‘snow machine’ fixed yet, meaning ‘computer.’ I think I know what he’s trying to say, so I ask if my reading is correct. Again, it’s back to ‘leading the witness.’ He does not always agree with my interpretation, so it is possible that when he accepts my version, it’s the correct one. I suppose that by living with and loving someone for 24 years you have some idea of what he may be thinking. In any case, I feel relieved to know that comprehension is still there.

We made it to physio on time this morning. I decided to let him go in himself to make sure he still knows how to get there. He couldn’t reassure me by explaining it to me, so I knew I’d have to take time from my usual work day to see for myself. I parked the car, and entered the building with some trepidation, hoping I’d find him easily. He was there, alright, but the session was scheduled for tomorrow! Thi was absent last time, and so Natasha saw him and scheduled 2 appointments with him for this week, unbeknownst to me. Imagine if I had left him there and gone off to work, as I usually do. My mother normally does the pick up. This is not a good week to tamper with routines. Tuesday will not do, since I have to be at work for 8:00.

My mom will take Gilly tomorrow and try to untangle the confusion, and explain to Natasha that I am the one who schedules appointments, and why. I have no idea what happened to Thi; perhaps he’s sick, or out of town…I will need to get to the bottom of this and put measures into place so as to avoid snags that could potentially create a safety issue for Gilly.

We returned home and I remained there to work for a few hours. He made a pot of coffee when he tired of watching me work (he said he was watching me relax, but I clarified that I was trying to work so as to remain on top of my game; relaxed would not be an accurate word to describe my state). I had to leave for a seminar and meeting, but Yaron was home for most of the day. Anita was sweet enough to offer to come and stay with Gilly in Yaron’s absence (he had his last driving lesson), but he was adamant that he would be fine. He promised to remain on one level; I worry about him falling down the stairs. All went well. He called me once, and he answered his cell when I called him; we were in touch. He was in good spirits and as ‘with it’ as he ever is these days.

He greeted me warmly when I arrived, and seemed happy to spend time with me. He’s not all that demonstrative in this regard these days, so I happily hung out with him. He continued to try to express himself, but the words, this time, were simply stuck in his head. He said ‘forget it’ instead of inserting words that seemed nonsensical. Regardless, he was more verbose than usual this evening.

I asked him if he feels frustrated that he cannot express himself well, and he acknowledged that this is true. I asked if it makes him feel lonely, and he said no, not really. I tried to help him express his feelings on the matter further by asking him several questions, but I did not hit on the right assumption.

My next campaign is to organize some sort of communication tool for him. There are some techniques used in special education, and I will investigate further to see if I can find a device that could work for him. I haven’t forgotten about any of my other unfinished campaigns; this is just a new one to add to the list. Anything I can do to improve his quality of life is worth trying. I almost had him agreeing to work with plasticine today to create molds and design plaques with different textures out of Plaster of Paris. I hope to have some time to show him how to do this. I think he might like it. Yet another campaign.

Home from the Biosphere? The jury is still out

2006-10-15T14:58:00.000-05:00

We’re home. I’m writing quickly because the phone is ringing off the hook. I understand that people want to know, so I’ll give you the fastest version I can type out; no edits…just raw info.
I found Gilly in better condition this morning. He still has trouble finding words, but they are closer approximations to what makes sense today (except that he told me he’s in the biosphere, meaning hospital, I suppose).

Dr. Carlton (sp?) the neurologist on duty saw Gilly at about 1:00 or so. He did a very thorough examination, and determined that there is no serious crisis at the moment. He does not know exactly what happened, but has not ruled out a mild seizure.
He said that Gilly’s condition is very complex, so it’s not easy to expain the nature of the problem. It could be tumour related, but perhaps not. I wondered out loud if it could be medication-induced, and he took this suggestion very seriously and had another look at the list of meds Gilly is on.

He upped the Dilantin (ant-seizure) just a tad, as a preventative measure, and suggested slowly taking him off the anti-depressant to see if that could have been the irritant. He likes to try only one change at a time (which makes perfect sense), and so taking him off the anti-depressant is what he deems a ‘change,’ and I guess the increase in Dilantin is negligible, so that is not a real change.

I mentioned that he was on a higher dose of Decadron (steroid; reduces swelling) while in the hospital, so perhaps this can explain the improvement. He said it’s not wise to have him remain on a higher dose. They all say that, so I guess it’s so. They really try to minimize the dose.
We’re upping the surveillance this week to be sure that he is steady enough on his feet and making reasonable decisions. Although we only ever leave him alone for short spurts, we’ll keep a much closer eye on him this week.

Moments after arriving home, our two children walked into the house, escorted by Yaron’s friend James, with bags of food from Solly’s. Gilly is sitting next to me scoffing up a storm. What a wonderful welcome!

Sleep tight

2006-10-14T23:35:00.000-05:00

Gilly exhibited the same bizarre symptoms today as he did on Thursday evening. His responses to questions seem nonsensical. I guess it could be a matter of worsening in the area of ‘word finding,’ but his answers are getting more and more ridiculous. At about 4:00 p.m. he shook his head vigorously a few times, followed by “ouch,” pointing to the top of his head. I asked him where it hurts, and he said “the cold spot.” I called the Jewish and spoke to the doctor on call in the Oncology Department to ascertain whether or not I should bring him in. They advised me to do so. He of course protested, but I didn’t listen, so we spent about 6 hours together in Emergency (nothing at all like the show, by the way). Tamara joined us, so I had a worry partner.

They drew blood and did a CT scan, and found nothing of concern. I was not all that surprised, but still puzzled as to what is causing the behaviour change (which worried the resident more so than the pain in his “cold spot,” which never returned after the few times he shook his head at home).
She advised that we have Gilly stay the night and have the neurologist see him in the morning. She consulted with him by phone, and he suggested that Gilly be followed up. She offered the choice of leaving and making an appointment with Gilly’s neurologist, or waiting at the hospital until morning, but strongly suggested he remain to be seen. She pointed out that the recent falls are of concern, and he should be checked out thoroughly to see what’s going on.
Gilly hesitantly agreed to stay and shooed us out (my mom was there too by then). So I am home, hoping to catch some shut eye. If I do not succeed in falling asleep, I’ll correct some exams, I suppose, to bide my time until morning. I was promised that the neurologist will not see Gilly before 9:a.m., so I plan to be there for 8:00 the latest.
I have a sinking feeling that unless the mystery is solved, and something can be done, I will need to have someone with Gilly at all times. I’m not emotionally ready to accept this, but I do understand the need on a cognitive level. It doesn’t make sense to me that there should be a growing state of confusion when the tumour hasn’t grown, so I’m hoping the change is due to medication, and that this can be modified.

Goodnight Gill. Sleep tight.

On duty

2006-10-13T21:35:00.000-05:00

I found Gilly’s behaviour rather odd last night. He was unable to make sense, although he could have simply been trying to grasp for words to express his thoughts. This symptom seems to have worsened over the last couple of days.

I wonder if the medication could have caused his bizarre behaviour. They say it takes 6 to 8 weeks for the anti-depressant to really kick in. Yesterday was very taxing on him; he was awakened early, and had a great deal of trouble rising out of bed. He went to physio, and this was the first time in a couple of weeks due to holidays and chemo. He returned home only to turn around and go back to the hospital for the afternoon appointment. I’m hoping it was just a matter of fatigue.

I allowed him to sleep until 2:00 today to regenerate. He left the bedroom to join Sheryl and me for lunch and in attempting to seat himself at the table, missed the chair and landed up on the floor. I think all 3 of us were equally shocked. He was ot hurt, but it was scary. What if he is alone and hits his head? Is full time care on the horizon? Sure, anyone can fall, but I’m not confident that he can think logically and call for help in an effective fashion. More of the same worries, progressively magnifying.

Soon after we greeted Brad from the CLSC. I told Brad about my search for an O.T. He will double check at the CSSS to ascertain whether or not this type of service is available to Gilly through the health care system, and will also gather information on private O.T.’s. He reported that Jennifer noticed that Gilly has a harder time with utensils (when eating) and his balance seems to be deteriorating. I would say that this is noticeable to me as well. Gilly told him that he finds Jennifer useless, and tried to explain why. Brad took his feedback seriously and promised to look into who the other woman was who substituted that day, and whether or not a switch can be made.

Shabbat dinner was good medicine. With 13 mouths to feed, I hardly did a thing; Mom brought the main dish, side vegetable and desserts, Auntie Ruth the fruit and Susie the salad. I started the rice at 6:00; not work intensive for me. I enjoyed every guest, every moment and every mouthful. My daughter took the reigns, as usual, and worked her magic on the Bar-B-Q. It was a group effort, well worth our while.

Gilly seems much more ‘with it’ today. If I notice another lapse, I will call the hospital and ask what to do. For now, I’ll chalk it up to fatigue and hope for the best.

He’s snoozing in his favourite chair, and I believe he’s doing fine, so it’s important that I catch up on my own sleep. I spent a wakeful night out of concern for his unusual behaviour. As soon as I managed to fall asleep, Liylah decided it was a fine time to romp in her fenced in yard; she whimpered next to me until I let her out. In the olden days I would have turned to Gilly to inform him that his dog needs to be taken out. This won’t do these days, so I had to drag myself out of bed. She kept coming in and out until 4:00, at which point I shut my door tightly and drifted off for a couple of hours. I have the feeling that unless I manage to hide, I’m always on duty. I’m glad I have the strength for it. It is due to the support I receive that I am able to muster up the energy when it is called upon.

Still gaining

2006-10-12T18:38:00.000-05:00

I darted through the halls looking for Gilly in one waiting room and then another, and back again to the first. “Where did he go?” I questioned myself nervously. I had arrived a few moments early to be sure not to miss the visit with Dr. Kavan, and had instructed my mom to wait until he had his blood test before leaving, and have him wait for me in the waiting room. Could he already be in with Dr. Kavan? I politely waited my turn, my anguish turned inwards. Finally I got to ask about Gilly. “I saw him awhile back,” the secretary replied quizzically.

A volunteer stepped up suddenly and assured me that he is fine, and already being seen. I could barely contain myself from sprinting down the hall as I followed her at what seemed to be a snail’s pace. I should have known better; he was safe and sound, my mom was there at this side and the good Dr. hadn’t yet made his appearance. It was still 5 minutes before his scheduled appointment. We normally wait a long time to see Dr. Kavan, but today everything was running like clockwork; only the mechanism was set a bit too fast. No harm done. I was there to ask the questions and provide some answers. My mother was relieved because #1 she was unaware of what questions I had to ask, and #2 she is free tonight; no need to read the Blog because she’s well informed (which is a joke; she’ll probably read it anyway even though she said she didn’t have to).

Gilly gained a kilo! Pretty soon he’ll be bursting out of his clothes…NOT. Dr. Kavan said that he must be doing great, because the resident didn’t even notice his poor vision. He spontaneously tried testing it there on the spot, I suppose because he thought perhaps there’d been an improvement. He failed to get a true handle on the ‘perceptual’ aspect of the problem, though. Many health professionals who have dealt with Gilly have not been able to recognize the severity of the visual condition he lives with.

This reminds me of the way some pediatricians test children’s hearing; they clap next to the child’s right ear and then left, and if the child turns towards the sound, they claim that the hearing is fine. Having worked at the Montreal Oral School for the Deaf for many years, I know only too well that this sort of screening is insufficient and downright faulty. Many children with hearing problems are diagnosed later than they should be because the parents are not advised to have a proper hearing test.

The professionals at Montreal Association for the Blind seemed to fully grasp the nature of his visual problem, but he unfortunately does not fit the criteria for follow-up services, so it doesn’t help us much at all.

Dr. Kavan asked, “How are you doing these days?” Gilly replied, “Bad.” I did a double take. My mother had just reported to me that he said, “Great!” when the resident asked him how he was feeling moments earlier.

He was not able to express exactly what he meant when asked to explain why his answer was so drastically different, because the words do not come out easily. By probing with [yes / no] and [this ‘or’ that] type questions, we gathered information from him that led us to guess at what he was trying to articulate. It seems that he is feeling sad because he does nothing all the time.

Dr. Kavan asked about the anti-depressant. I told him that he continues to take it. He explained that some anti-depressants cause the person to feel ‘flat’ and so they do not experience ups and downs. We’ll have to keep a close watch on the situation, I guess. For now, we will not change his medication.

I brought up the idea of hiring an O.T. on a private basis to help him learn to deal with his physical limitations, and find past times that would help him feel more fulfilled. Dr. Kavan agreed that it would be a good idea to go privately, because the chances of obtaining the services of an O.T. through the system are not good. I asked for recommendation as to where to look for a good one, and he said to call Denise next week at the Neuro. He said he’d ask the nurses at the Neuro for information.

I will be pursuing this to the nth degree at this point. We seem to go through seasons when it comes to Gilly’s needs; everything in good time. I move from one sort of hunt to another, although I must admit that I have been wondering and asking about the services of an O.T. since he was in the hospital last February, relearning to walk. I’m officially moving my search up a notch in terms of priority.

Dr. Kavan turned to me and asked, “So are you working full time?” I told him that I am. He wondered if Gilly spends his day at home alone. I told him that we have a number of sytems working. He looked over at my mom and acknowledged, “You have a supportive family.” “Yes,” I admitted, and friends and the CLSC help support us too. He seemed to understand how difficult it must be for me to coordinate it, just by the look on his face. He turned to Gilly and gave him a gentle pep talk; he emphasized that he has some responsibility to do some work on his end too; that he has some control over the situation (not in those exact words, but this was the impression I was left with. Perhaps my mother and / or Gilly read something different into it).

On the way home I asked Gilly why he told Dr. Kavan he’s sad and feels bad, while he told the resident he feels great. He couldn’t explain it. I took a guess, “Is it because you know Dr. Kavan better and feel more comfortable telling him the truth?” He agreed with this explanation. Who knows? I may be leading the witness???

We are pleased over all with the news on the medical front. Gilly’s condition as far as neurological functioning remains stable, the return of his appetite has made a difference in that he continues to gain weight (although he still looks like Twiggy on a diet to me) and we are to continue along the same lines as before.

Let's hear it for 5 day weekends

2006-10-10T20:50:00.000-05:00

I ploughed away at my school work today from dawn until dusk, and managed to get a decent chunk of necessary tasks attended to. Why can’t all weekends be of the 5 day variety? Maybe I should start a petition going.

I dragged Gilly out of bed by 11:00 this morning. I plan to gradually bring him closer to a somewhat ‘regular’ schedule. The heavy duty meds are done for now, so he has a chance to recoup. He remained awake for most of the day; his energy level has improved. The fact that he continued to eat while on Temodal makes a huge difference, I find, to his general demeanor.

Tomorrow it’s breakfast in bed (if I cannot convince him to rise) at 7:00 a.m., because Yaron and I leave for Vanier by 7:00. I’m feeling refreshed, so I’ve already set out his lunch on a platter and my bags are waiting by the door. Jennifer from the CSSS will walk him through the steps of warming his lunch.

We have an appointment at the Jewish on Thursday afternoon with Dr. Kavan. My mom will get him there for his blood test and I will arrive in time for the actual appointment. We are coming from opposite ends of the city. My mom is saving me about an hour of travel time and another hour’s wait after the blood test, which allows me the opportunity to finish my work day (fieldwork supervision downtown). I’m grateful for the loving support, and Gilly is comfortable with the arrangement; he feels secure.

I feel as though, for the meantime, I have stepped off a treadmill that was set for a faster pace than I could keep up with. Next week it’s back to reality until mid-December. I’m in better shape both emotionally and physically after this week’s break from routine. Mid-term is practically upon us; where has the time gone? I’m thrilled to have made it this far into the semester with my head still attached.

Money in the bank

2006-10-09T20:00:00.000-05:00

Last night’s pill taking proceeded smoothly. Many thanks to Yaron and Chooky for a job well done. Gilly had something to do with it too; he solemnly promised to take the pills no matter what. He finally realized that I was devastated by Friday’s night’s events, and insisted that I go out and put my trust in him. He didn’t let me down (not that he would ever do this on purpose, of course. I am sorry he perceives it as a trust issue; he simply falls asleep at the drop of a hat these days).

Weather-wise, it was the most glorious weekend ever. I was fortunate to join the w.c. (my friends’ not so secret walking club) on two delightful occasions. I desperately need the exercise; the sunshine was a bonus. Fresh air running through my head feels marvelous; downright liberating. Thanks for including me, w.c. members!

Gilly encourages me to go out and get my muscles pumping whenever the opportunity presents itself. He knows how good it makes me feel to release my pent up emotions in a healthy, enjoyable way. We both benefit from the results. He spent some quality alone time with his children, so I had no call to feel guilty for ducking out for a few hours to walk both Sunday and Monday. There’s nothing like a holiday weekend to regenerate whatever needs rejuvenating.

Our starting point and final destination was the Atwater Market this afternoon. I chose large, ripe, juicy MacIntosh apples to make apple treats for my fellas. Gilly is savouring a maple baked apple at this very moment. His sense of taste has heightened recently; he actually rubs his hands and licks his lips in anticipation of favourite foods. I am beginning to enjoy cooking again.

I have one more day tacked onto the weekend, because it is Monday on Tuesday this week at Vanier (to make up for Monday holidays). I am able to work from home tomorrow because my students asked to have their Monday seminar in the field on Thursday instead, and there is no scheduled faculty meeting. Yet another bonus! I tend to get more work done from 6:00 a.m. to noon on my dining room table than anywhere else these days. It is quiet at that hour, and my mind tends to be fresh. I plan to take advantage of tomorrows’ forecast for rain to buckle down and make some serious headway in my school work. I want to ensure that this l-o-n-g weekend’s liberties ease next week’s time constraints; like freezing healthy, delicious leftovers / money in the bank!

My children to the rescue

2006-10-08T20:00:00.000-05:00

It’s been a few days since I’ve written. Temodal sessions wear me out; the late nights are hard for me, because I have to fight the impulse to sleep, and I’m tuckered out. On Friday my mom kept me company late into the evening. Soon after she left, I went downstairs and gave Gilly the anti-nausea mediation, then set the timer for the Temodal. Bleary-eyed, I handed Gilly the final pills of the evening near midnight. He held the pills and water in his hands and appeared poised to take them. I bid him goodnight, went upstairs and immediately fell into a deep sleep.

The next morning Tamara was kind enough to come by and hang out with her dad to make sure he was served a proper lunch at around 1:00. I was invited to a brunch; just the ladies. When I hesitated the evening before, worrying that he would be off schedule if I missed his lunch period by getting home too late she offered to stay with Gilly. I was anticipating that final evening of chemo, and hoping not to have to be up so late. If lunch is late, so is dinner, and the cycle continues because 2 ½ hours of fasting before Temodal is key. I accepted her loving offer to assist me, partly because I knew her dad would love to have her company.

I arrived home around 2:00 to find Tamara, Max and Gilly looking very cozy as they lounged in the basement watching T.V. The beautiful, peaceful image was shattered when I looked at the coffee table and discovered that last night’s Temodal pills were still there. Gilly laughed it off and denied that these were the pills he was supposed to take.

I contacted the oncologist on call at the Jewish, and he advised me to simply extend the session for one more day. I reacted to this incident in an exaggerated manner; I felt responsible, angry, upset, exhausted emotionally and downright frustrated. I took to my room and wept for a while, just enough time to allow my extreme emotions to spill over onto Tamara. She was busy admonishing her father for laughing at what she saw as a serious situation, and tried to explain why I was distraught, but he continued to find it amusing. I finally calmed down and assured Tamara that he really does not understand the intricacies related to this medication and the time frames involved.

He is doing well through this 6 day Temodal session in every other way. He’s tired, which is expected, but his appetite has not waned at all. He is sociable and in good humour.

Yaron and his friend Chookie (not sure of the spelling) are doing a mitzvah this evening. They will take care of the pills. The instructions have been carefully laid out, and I’ve been told that form this moment on, I’m to go out and relax. Sharon suggested a movie and I’m on my way to pick her up.

Tires

2006-10-05T18:27:00.000-05:00

Today brought little change to Gilly’s condition. He feels more tired than yesterday, but other than that, nothing’s new.

I was so tired last night that I set the stove timer to waken me so as to remind Gilly to take his first set of pills 2 hours after dinner: 9:50 (the anti-nausea medication). Then, my intention was to set the timer for ½ hour later (10:20) because he has to wait that long before taking Temodal. I awoke with a start at 11:20 and dashed to the kitchen to find the first set of pills gone and the second set sitting there. The timer had to have been ringing for quite some time to allow ample time for Gilly to make his way upstairs (he moves slowly these days). I am astounded that I didn’t hear the buzzer at all. I slept like a baby.

It all worked out fine in the end. If needed, he could have taken more anti-nausea medication, but luckily, he didn’t have to. In fact, throughout all Temodal sessions, he’s never taken more than the bare minimum of anti-nausea medication. I will let Yaron know that this evening, even if he’s out (as he was last night), he should call home and wake me to make sure that all goes as scheduled.

I brought my car into Merson today to purchase a new tire; the flat is irreparable. The guys asked about Gilly, which warmed my heart. I was shocked to discover that one of them periodically takes the time to read the blog. So many people make the effort to remain abreast of Gilly’s situation. He really has a following.

The fellow at the desk suggested I may as well have my winter tires put on. I laughed and asked, “Didn’t I just take them off?” Nitai came by one day in June and noticed I still had them on. He mentioned that it is high time I have this attended to before I ruin them. He even offered to do it for me, but I knew I'd have to learn to manage this sort of thing on my own. Frankly, I am ignorant in matters of my car, and not proud of it. I cannot even tell the difference between winter and summer tires). I tend to learn best on a need to know basis. Well, I now need to know. I guess I’m ready for winter!

Slow down, you move too fast

2006-10-04T18:31:00.000-05:00

On behalf of Gilly and myself, I’d like to thank our very special nephew, Noam for stepping in last Sunday. It was a hectic day; he relieved me of my blog duties, which allowed me ample time for last minute dinner preparations (which included his favourite Auntie Cindy dish; mashed potatoes. He sure is easy to please). He’s quite something for a 12 year old, wouldn’t you say? His vocabulary is amazing. I believe it has much to do with his passion for reading, the sophisticated novels he chooses to read, his sponge-like mind and his participation in adult conversations.

(Please see photo of Noam and Uncle Gilly above. Photograph by Tamara, one of Noam’s greatest fans).

Gilly continued to hold his own in the appetite department all weekend long. He started chemo again last night. Despite increasingly greater fatigue (which would be expected when pumped with all the heavy drugs he’s on, and will be until Saturday night), his appetite continues to hold out.

I woke him this morning at 6:30 to invite him to the breakfast table as an option. I was concerned that, due to the medication, he may not be up to making his own toast as he has been doing. He accepted, but never seemed to make it out of bed after 4 calls. I finally offered to bring his food to the bedroom, and he agreed. Yaron and Gilly munched on toast together in our bed. Why not? The goal is to maintain his recent weight gain, so whatever works towards that end is worth a try.

I came out of my classroom at noon to find a message from Jennifer’s supervisor at the CSSS. She called to inform me that Jennifer would be unable to make it today; there would be someone else coming in her stead. I imagined Gilly fast asleep, not hearing the bell, so I called a few times until he finally picked up. I told him the story and suggested he get up out of bed and greet this new person.

She called me a short time later (unfortunately, I did not catch her name, but I will investigate tomorrow by calling her supervisor. For now, I’ll call her Anna). She was concerned that he was refusing to eat the [I must admit delicious] shepherd’s pie I left for him and asked what I’d like her to give him instead. She was willing to go through my fridge and pantry and find something he’d eat. I was impressed with her desire to ensure that he eats, and her overall initiative (something that Jennifer, to date, has not really shown). She also wanted to ensure that the pills I had left in the ‘shot glass’ on the table were the right ones to administer (which is a riot, since neither one of us have ever used these adorable family heirlooms for anything but pills - they look like miniature A&W mugs to me).

This was the first day I had not written “with lunch” next to the pills, because I had left all sorts of other notes for Jennifer with the pills sitting on the papers, assuming she’d make the connection, since it’s the same ritual every time she comes. Just goes to show that I must continue to leave detailed written instructions in case a switch of this nature takes place again.

This story reminds me of when my children were babies. I used to ask my mother to baby sit, and left her pages of instructions to follow, as if she hadn’t raised 3 babies of her own. In this case, the stakes are much higher; we’re depending on strangers to watch over my precious, fragile package. A care giver would not look after Gilly’s needs with as much love as a wife, child, parent or grandparent would; written instructions remain a basic necessity.

I arrived home a couple of hours later to find Gilly wide awake. He accepted the lunch I had prepared early in the morning and pretty much polished it off, even though he had had cheese and crackers as a snack with Anna. He sang her praises, declaring that she seems to be “good and efficient and very nice.” I will see if there’s a chance that we can make a switch when next we see Brad (a week from tomorrow).

Now that we’re settled into more of a routine (work for me, school for Yaron, physio and sundry appointments for Gilly), I find myself less anxious, but I continue to feel overwhelmed by the level of responsibility I have for every minor detail of someone else’s life. In the past I never packed a suitcase for Gilly; I refused to pick up his laundry from the floor; he made coffee for us both every morning, and tea every afternoon; I never chose his clothing or made any of his decisions. He was an equal partner in every way in terms of holding down the fort we call home and family. Now, I do almost everything for him. I lay out his bread for toast, filter his coffee, cut and place his fruit attractively on a platter, organize his pills for the morning on his placemat, place his apple sauce mixed with protein powder just off to the side waiting for his gradual consumption, prepare and label his lunch (a full course meal) so as to be easily identifiable in the fridge, leave notes for the caregiver (whether it be Yaron, Manuela, Jennifer, and now Anna) and gather my own materials and make for the door, all by 7:30 a.m. (if I’m lucky enough to make this deadline). I go to work and throughout the day manage to sneak in medical calls and emails to make or change appointments, gather information and so on. Frankly, it’s overwhelming, as I mentioned. But it has to be done, and the longer I do it, the easier it gets.

I work out systems and tap on all my friends and family as needed to assist me, and surprisingly I am able to muddle through what needs to be done. My best coping mechanism is my smile, fueled by others, especially Gilly. I try to seek out the humour; the pleasant aspects in life. I respond to love and friendship; what matters most is startlingly simple; each other.

Regardless of a positive attitude, I still haven’t enough time in my day to attend to all matters; I have to prioritize, and modify my expectations for what I can accomplish within a given time frame. I am always busy, and never get it all done. I used to take pride in completing tasks according to a self-imposed schedule, always demanding of myself to make an earlier deadline than required, just in case life gets in the way. Well, life is now permanently in my way, so I have no choice but to meet most deadlines just under the wire, and some, not at all. It puts life into perspective. What was my hurry? Where was I going? I used to be the type who never missed a meeting and always arrived on time or early. I admit now that I was silently intolerant of latecomers and those who asked for extensions, yet I envied those who could seemingly manage to be late yet not care.

I was put to the test yesterday. I left my office to find 4 teenage boys waiting in the car for me. Yaron’s friends appreciate their Tuesday afternoon lift home. I was exhausted, and nestled contentedly into the passenger’s seat to relax for the ride home. I knew I had yet to pick up the Temodal, and was not ready yet with supper. I was in the midst of entertaining the idea of cashing in on a generous gift we recently received from the gang at the LDAQ; gourmet take out when I heard a strange noise. Yaron hopped out to investigate, and quickly diagnosed the problem; a flat tire! My insides began to churn. How would I get to the pharmacy? How would I get to the gourmet take out shop? Where will I find the strength to meet this challenge? I myself had never changed a tire, nor had any of the 4 boys in the car.

After several emergency calls to Gilly we found the tools. It was quite a funny scene, actually. One fellow said, “How many Vanier students does it take to change a tire? One, and three to watch.” Gilly was pleased he could help (he’s no stranger to consulting over the phone; he walked Yaron through furnace repair this past winter over long distance from Africa, with Yaron’s computer acting as a webcam to send Gilly a viewing of the source of the problem). The disaster turned into a learning experience for all 5 of us. We made some mistakes, luckily not fatal errors (for example, we mistakenly jacked up the car before loosening the bolts, so the car swayed and dropped off the jack – oops!).

I do not believe I possess the physical strength required to get the bolts off a tire. I guess I’ll have to reregister with CAA, because there’s no guarantee I’ll have my son with me the next time this happens.

Yaron turned to me on the way home and asked, “Should we order some dinner?” That was the best idea I’d heard all day.

Life tried to get in our way; it slowed us down, but the sky did not fall; we shortened our path, adjusted our expectations and found the humour.

So Gilly is doing just fine, and we hope he continues to fare well over the next 4 days. Please remember that he’s safest when people with colds and other nasty germs keep their distance.

The beginning of Noam's blog-writing career

2006-10-01T17:36:00.000-05:00

Hello, humble audience! It is not your usual hostess writing today. Today, it is someone new. My name is Noam Blauer and I am Cindy and Gilly’s 12-year-old nephew who has courageously accepted the task of informing you about today’s events. I gaze at my surroundings in thought, pondering how I can begin my blog-writing career. Only having been told what happened today and not actually being here was an obstacle. But as a member of the Blauers family, I am always game for a challenge. Anyways, let’s get to work!

This morning started off like any other morning with Gilly (or “Uncle Gilly” to me) waking up lately. Before long, a mysterious visitor arrived at the Schwager’s doorstep. His name was Adam and he was Gilly’s old work buddy. With magnificent, pink and white flora in Adam’s hands (which is now gracing our dinner table), he was warmly let into the house and shared a nice, enjoyable while with Gilly until he left.

Liylah has also been having a tremendously pleasant day. She is absolutely adoring her newly FENCED backyard. Although there is a small hole under it that will be repaired, she has not even realized the minor imperfection or even conspired the idea of crawling under it into the neighbours’ backyards and causing mischief there.

Right now, we’re welcoming guests to a scrumptious, pre-Yom-Kippur feast.

That’s pretty much it for today!

“DING DONG!”

What’s that? Guests? Better go greet them! Bye for now!

All is quiet on the homefront

2006-09-29T21:47:00.000-05:00

Today was uneventful in terms of medical issues; Gilly slept in until 11:30, despite many suggestions to join me for breakfast. He ate, and rested, ate some more and took a nap, and…you get the idea. In fact, he’s snoozing on the couch as I write this message.

At least he’s eating. Either my cooking has improved or he’s just plain hungry; it really doesn’t matter which. I want to be sure to fatten him up considerably over the next few days, because who knows what will happen when he goes back on Temodal this Tuesday. I want him to start out ahead in the weight department.

I enjoyed my day; some school work to start things off, followed by dinner preparation, a few messages under my belt as the brisket roasted slowly in the oven, a delicious maple latte with Tina (the combo is hard to beat) with a pleasant Shabbat dinner as the finale. Auntie Ruth, grandma, Yaron and Fred graced our table while Liylah helped herself to one of the nougat bars I bought for Gilly as a special treat.

No news was good news

2006-09-28T16:50:00.000-05:00

I must try to remember to be more positive; Dr. Kavan came through for us this morning. I called the number given to me by Denise, and he took the phone immediately. He started off by laughing about the lady’s knee on the scan. I held my breath in anticipation, but laughed along with him to be nice. He holds our future in his hands, after all.

He reported on the findings: There doesn’t seem to be a major change. The most recent MRI is slightly different, but this is common after radiation / chemotherapy apparently. The treatment itself may cause structural changes. He noted that changes were already apparent in April (which Dr. Sultanen had refuted way back when). I acknowledged that I was aware there was some discrepancy at that time as to how to read the ‘difference' noted. He said, “I am not concerned that much.” I only wish that he had left out the last two words, because everything else all day long was positive. He went on to say that he sees no need to change anything regarding treatment; the disease seems to be still under control, and is not the aggressive type. He advised that Gilly go back on chemo in a few days time.

He was rather chatty, and happy to answer all of my questions (regarding other medications he’s on, etc.) so I probed further. I asked how and where Gilly will continue to be followed. I shared my frustration at having to run all over town to gather MRI CD’s, and mentioned that I as caregiver need to be sane, and this sort of nonsense drives me around the bend. I was honest in stating that dragging Gilly downtown for an unnecessary appointment last week was not appreciated, and I want to avoid this sort of occurrence in future. “Please tell me exactly what the story is so that I know where we stand,” I appealed to him. He admitted that this should not have to happen again. He wants to see Gilly on a monthly basis at the Jewish to monitor his status in relation to chemotherapy. Every four months he’d like him to have an MRI at the Neuro, and then have a follow-up visit there (instead of at the Jewish), so as to tap into the expertise of the neurological staff at the Neuro. I said it sounds O.K. with me if he sticks to that system.

I admitted that it was very simple to obtain a copy of Gilly’s MRI from the Neuro, whereas it was expensive and complicated to do so at the Jewish, which was one of the annoying factors that caused unwarranted stress on my part. He agreed, and laced into the system at the Jewish when it comes to MRI’s.

We left it as such; Gilly will go back onto Temodal over the next few days (I’ll wait until after Yom Kippur, I guess). We will see Dr. Kavan next on October 12th at the Jewish.

I went off to begin my workday at 9:20 after spending time in my office (cell phone in my car) to make the call. My mom picked Gilly up after physio (I had dropped him off beforehand) and took him home. Jennifer came by to remind him to eat lunch and take medication. They walked around the block just before after lunch. She guided him through his ball exercises too (I assume; I left pictorial diagrams with written explanations, which Gilly of course is unable to read). He says he requested that she do these two extra things with him as a result of a slightly heated discussion this morning.

Just before leaving the house this morning, he refused to allow me to bring the ball upstairs, and told me to leave him alone on this matter. I try to have everything available and accessible for Jennifer so she has all the tools she needs to follow through on prompting him to eat and now to institute the exercise program as part of their regime. I put the cards on the table for him by warning him that he needs to exercise or he will become totally helpless. Apparently, while on Decadron, he must work on his quads, so this is crucial too. He took my advice to heart, it seems, and not only permitted me to bring the ball upstairs, but claims that he asked her to take a walk. I will have to contact her to give her some further information. She may not realize that he needs to be coerced into doing the exercises, and that she should not take no for an answer. This will save me the unpleasant task of debating this with Gilly every day.

In the car early this morning on the way to physio, I asked him, “What role exactly would you like me to play in your life? I want to do what’s best, but I must respect your wishes at the same time. If you really want me to leave you alone, well, I guess I may have to do so, but I worry about your health.” He answered immediately, “I want you to do just what you are doing.” “Bugging you and pushing you to do things you do not wish to do?” I countered. “Yes, you have to keep doing this.” Well that settled matters. I feel he gave me license to nag him. I’m glad that Jennifer has taken over some of these tasks so that I have less to nag about.

I met Gilly back at the Jewish at 2:55. My mother dropped him off for me so that I could work until then, which made a huge difference in my week. I now get tomorrow off to work from home.

We entered the radio oncology department and I asked Gilly to take out his hospital card. “I forgot it,” he admitted. I decided to let him take responsibility, so I asked him to be the one to go and tell the secretary (they always ask for the hospital card; I wasn’t home to remind him to take his wallet). Dr. Sultanen motioned to us from a distance to come in quickly, because he needs to leave early. We happily sauntered past the secretary's desk into the examining room.

The size of the tumour, he explained seems to be either the same, or a little bit ‘less enhancing’ (a GOOD term). Today’s news just keeps getting better. The MRI shows no swelling. The fatigue that Gilly was feeling (which sent him off on a Temodal holiday) is caused by a syndrome, as Dr. Kavan mentioned to us on the 7th. I believe it is spelled 'somnalence.' It is due to radiation. Not everyone experiences it, but it usually appears about 8 weeks after radiation (which makes total sense) and can last for a couple of months, more or less, depending on the person.

This was a tremendous relief to hear. I shared that I had spoken earlier to Dr. Kavan and provided him with the information I was given this morning. He suggested that we see him again whenever we have an MRI. He doesn’t mind if it’s from the Neuro, but I’d have to bring it to him again, because reports are not detailed enough. He said that if you ask nicely, the radiologist at the Jewish will agree to read the MRI from the Neuro, but will provide only a verbal report. I said that we don’t need it in writing because we will have this option at the Neuro, but another opinion is always welcome (especially when terms like ‘less enhancing’ are used).

Dr. Sultanen at some point during the conversation suggested we stick to one hospital. I reminded him that we chose the Jewish in June and had the files moved, but Dr. Kavan insists that it is too long a wait at the Jewish for MRI’s. He did not use the word ‘hogwash’ but his face spelled it out; he intimated that this is an exaggeration, and if we ever want an MRI done at the Jewish, he would be most happy to arrange it. I mentioned to him that in my profession, working on a team seems to hold a very different meaning. He smiled, and we discussed the fact that Dr. Kavan works at two hospitals and so is not a consistent member of the ‘team’ at the Jewish.

Dr. Sultanen left it very open to us as to how often and for what reason we should see him. He offered to review the MRI’s from the Neuro every time we have one done, and to see us after having a chance to compare results. He said we are free to call him if we have any questions or concerns and he would be happy to meet with us at our bidding.

We left the hospital as if walking on air. When we arrived at my car I mentioned that I found a legal spot without a meter. I admitted that I saw this as a sign of good things to come today, and my superstitious thoughts were validated. While driving, I looked over and caught Gilly laughing. I asked, “What’s so funny?” thinking he was laughing at my driving skills (which would not be surprising). “Nothing’s funny. I’m just happy about my results.” Gilly has probably been more aware of the gravity of my worries than I had thought.

A huge weight seems to have been lifted from our shoulders. I know I’ll sleep soundly tonight.

Still weighting

2006-09-27T20:36:00.000-05:00

Thanks to Joey’s excellent MRI CD bootlegging skills, all CD’s are in the hands of the professionals who requested them (and even one who didn’t; Dr. MacDonald was surprised to receive his copy, but I asked him to keep it on file anyway. He had mentioned looking at it a few weeks ago to see if the appetite center was affected, but perhaps was looking for the report rather than the MRI itself).

The results are still pending, but a complete set of the pieces to the puzzle are in the box, ready for assembly. It is interesting to note that the Jewish General charges the patient $25.00 for a copy of his MRI on CD which takes days to process, and they are very particular about who picks it up, paying special attention to the signature on the request form. The MNI, by contrast charges nothing, and they prepare it by the next day for anyone to pick up, signature or no signature.

I called Denise, the neuro oncology coordinator at the Neuro on Monday morning because she is the one I was instructed to leave the CD’s with for Dr. Kavan. I wanted to know her schedule, so I could drop the CD’s directly into her hands, rather than have them go astray. I also had to pick up the MRI CD from the Neuro on the same day for Dr. Sultanen, but only after 1:00 P.M. When she understood my dilemma (I would have to go twice to meet both deadlines) she asked me to hold the line; she arranged to have the whole kit and caboodle take place in one fell swoop. I was so relieved to find a human being on the other end of the line.

I decided to go one step further and ask her to find out from Dr. Kavan if he expects me to keep our Thursday appointment with him at the Jewish (as scheduled on September 7th before he realized the MRI findings would be questionable). She called me back today to say that no, I should call him tomorrow morning instead. She left me a number with an extension. I wondered if I’d actually find him on the other end! She also told me to cancel the appointment at the Jewish.

I was at the Jewish this afternoon to see the CNR team, so I decided to cancel the appointment for Thursday in person. The secretary was surprised, because my appointment was already cancelled by someone else and rescheduled for October 12th. I was perplexed. When I arrived home there was a message from Dr. Kavan’s secretary at the Jewish saying he’d be out of town on Thursday (tomorrow) and so the appointment is rescheduled to October 12th. The prospect of speaking with Dr. Kavan tomorrow morning seems much less likely now. Oh well, we’ve waited for news since August 30th, what’s a few more weeks!!!

We will see Dr. Sultanen tomorrow afternoon, so we may get some preliminary findings from his angle. He only received the CD today (I dropped it off on the way to the CNR clinic), so I’m not sure how detailed his response will be. I am curious to hear what he has to say.

One thing Joey noted when copying the CD’s is that each institution’s MRI format is different (by now, he’s see the MRI from Clarke’s, the Jewish and the MNI). We even caught a glimpse of some lady’s knee on one of them! It is apparent that comparing them will more than likely be a challenge for anyone who attempts the task. It is crystal clear that from this point on, we will be sure to have the MRI done in the same place, so as to avoid all this nonsense and confusion. The jury is still out as to where it ought to be, but the information does keep pointing towards the neuro, for obvious reasons.

The good news is that Gilly gained about 3 pounds since September 7th. His appetite has been increasing steadily, to the point where I could almost describe it as normal. We don’t know what to attribute this to, since he started the anti-depressant and the steroid at the same time as taking a holiday from Temodal, but unquestionably the indicator on the scale is moving in the right direction. Nelda offered Gilly one of Dr. MacDonald’s fresh apples from the market, and he gladly took it and ate the whole thing. It was so large that I was sure he’d hand it over to me to finish, but he polished it off and smacked his lips.

Mood too has improved. When I call home during the day and ask, "How are you doing?" I receive a cheerful, "Great!" That's more like the Gilly I once knew. He’s more wakeful in the evenings, but tends to sleep in very late unless wakened. Today he was roused from bed to answer the door to Emma, his friend from the fruit store. She called last night to ask if Gilly would enjoy a visit. I hardly expected her to find him in bed! She came bearing gifts; his favourite fruits. He enjoyed the visit immensely, and I'm thankful she was there to get him up to face the day.

Later on, while we were at the CNR clinic, our silly dog managed to kidnap one of the enormous mangos to take to bed with her. She really is a card, this hairy (and I do mean hairy) fruit thief. She would have made an amazing mother; so nurturing.

We finally have a fence. It’s terrific, except for one slight problem; the dog can crawl under it with ease (or so I would imagine). The installers were so proud of their work at days end; they failed to understand why I was so irate when I noticed the gaping holes. Jimmy, who I understand now is a salesman and knows nothing about building a fence, met us way back in June (I think) and told us to take down all the foliage to make way for the fence. Unfortunately he failed to consider the need for the bottom of the fence to reach the ground or thereabouts. He knew it was for our dog. I mentioned this several times as being the central reason for a fence. The fence does hug the ground in some areas, but not everywhere. This is a huge problem. The owner of the fence company promised to come and take a look to see what can be done to solve the dilemma. It’s back to the drawing board for a while longer.

I am not amused. I was hoping to close this chapter by the weekend, but the conclusion hasn’t been written yet. In the scheme of things, it’s not that serious; I’m sure we’ll think of something, however my nerves are shot from all the serious issues still pending; I am not as laid back as I’d like to be.

I cannot begin to express the magnitude of our gratitude for the acts of kindness that continue to come our way. We have received gifts, offers of every kind, visits, invitations, homemade goodies, phone calls, emails, blog comments, care packages and more. It is obvious that people care, and this is demonstrated in so many ways; all gestures are deeply appreciated, even if not acknowledged in a timely fashion. Time has taken on a whole new meaning. I need one more day at least to be added to every week; preferably one on the weekend (or mid-week with weekend properties). I can dream, can’t I?

I must say that my time at work is getting easier as routines fall into place for Gilly in terms of eating both breakfast and lunch. Everyday we solve another matter, and life improves for us all. My days are packed during the week, but I am less stressed out over Gilly’s daily care. I can focus on my work more, and can actually say that this week’s teaching experiences felt downright gratifying. I have been enjoying my Tuesday Yoga sessions and Wednesday walks with friends at work; a break during the workday is rejuvenating. Everyone seems to echo the same sentiment; you’ve got to take care of yourself, Cindy. I’m trying, people. Squeezing some fitness into my week is a giant step forward.

New directions

2006-09-24T10:06:00.000-05:00

I could tell that the tides were turning on Thursday evening of this past week. I was lying in bed engaged in a coughing spell when Gilly appeared in the doorway. “Are you O.K.?” he asked caringly. I was taken aback; he seldom moves from his couch during the evening, and rarely takes notice of what goes on around him. “I’m fine,” I assured him. In the wee hours of the morning, I went to the bathroom. Upon return he questioned me again, “Are you sure you’re all right?” “Why?” I asked. “I just went to the bathroom like I always do in the middle of the night.” “It is the way you’re walking,” he responded. “You look like something’s wrong.” How very perceptive of him to notice that I was feeling uneasy and wondering if I’d be able to work the next day.

I woke up for work with a scratch-free throat. I firmly believe this has something to do with his show of concern; he magically healed me with his own burst of strength. I know that he cares deeply all the time, but expressing this is rare these days. Perhaps it’s because he’s at a loss as to what he can do about it, and feels badly that I have to go on managing pretty much everything regardless of my state of health or fatigue.

There have been other changes for the better in terms of willingness to socialize, a more cheery disposition, appetite and a regained sense of hope. He attended two Rosh Hashana dinners and held his own in the consumption department along with the rest of us (well, I suppose I beat him in the dessert department, but that’s nothing new). I gave him the opportunity to sleep to his heart’s content yesterday (until 2:00 P.M.) to allow him the opportunity to enjoy the evening’s festivities which technically cut into his usual nap time. It worked. Everyone who saw him last night would agree; he was in rare form, relatively speaking.

Yaron has changed too. Pretty soon, I’ll come home and fail to recognize my co-inhabitants! I arrived home on Friday afternoon in a mad rush to get ready to go out for dinner. Luckily I was not responsible to make dinner this year; it would have surely been take-out. Yaron asked a favour of me as soon as I walked in the door and I responded by spewing out all I had to do in the immediate future, including the laundry; I had items of clothing in there that I needed for the evening. “I did it, mom,” he humbly informed me. “Did what?” I asked absent mindedly. “The laundry,” he supplied. I put the clothes in the dryer this morning and put another load up to wash,” he announced. The gesture blew my mind. I stood up and took notice of how many notches in maturity he had recently climbed; it’s initiating the assistance without being asked that makes all the difference in my harried life. I was touched, relieved and thankful all at once. When you least expect it, your children demonstrate all you hope you’ve taught them over the years. It’s beautiful. It must have been the love that I added to the apple crisp on Thursday!

We have some decisions to make in the next little while as the doctors take their sweet time reading the MRI information from their respective standpoints and hospitals (ridiculous, but true). Gilly’s right side is much stiffer than before (or so it seems to my untrained, yet loving eyes). He resembles Twiggy, has little energy, yet his mood seems to have improved. He does not initiate self-care, but manages to care for himself when reminded. He does little with his time, but will accept invitations to walk when prompted (as long as the warmish weather holds out; I worry about his willingness to move outdoors once the snow arrives). So, what alternatives are available out there for us to try? With so little free time on my hands, and various other pragmatic constraints, it may be tough to find answers, but western medicine has let us down in the recent past, so I have to work on expanding the possibilities.

George shared a joke with me the other day to help lighten my mood, and it really is very apropos to our current circumstances:

What is the difference between doctors and G-d? Answer: G-d knows he’s not a doctor. (sorry doctor friends and compassionate doctors out there; it is not meant to be a blanket statement on doctors. I hate the old adage about teachers that my father used to remind me of when he wanted to pull my chain: If you can, you do. If you can’t, you teach).

I leant of the term ‘holistic’ from an educational angle a number of years ago, but never fully appreciated its medical significance before now. The western medical world compartmentalizes a person; each specialist examines you from his / her own standpoint. Luckily for us, the CNR team is a glaring exception to this rule. The professionals involved genuinely take the whole person and his needs into consideration. The CSSS is structured in somewhat of a holistic manner, and so we have had a modicum of well rounded services, but not nearly enough. It would be too much to expect, given the resources they have available. We have some leads, and I hope to pursue them this week as the MRI’s are analyzed and compared.