I get la pointe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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

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?

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.