The blog ends here

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.

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

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

Gilly is still sleeping soundly surrounded by loved ones.

A restful end of the day

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

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…

(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

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

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."

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

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

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)

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

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

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

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

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

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

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.