Mucha adieu about nothing; 2006 is a blur

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

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

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

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

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

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

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

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

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

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

Daddy's little girl

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

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

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

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

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

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

Escape from reality

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

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

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

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

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

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

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

Mr. Fix-it

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

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

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

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

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

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

The colour purple

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

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

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

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

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

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

Nothing like good friends

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

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

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

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

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

Night moves

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

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

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

Union rules

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

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

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

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

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

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

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

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

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

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

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

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

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

Much ado in a day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God bless them all

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

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

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

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

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

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

Holiday magic

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

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

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

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

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

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

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

Let's get physical

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

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

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

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

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

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

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

Gadgets and gizmos

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

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

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

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

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

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

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

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

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

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

Change of face

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

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

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

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

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

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

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

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

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

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

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

Remembering Grandma Ida's latkes

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

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

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

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

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

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

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

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

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

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

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

Check out Ziggy, Linda

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

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

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

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

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

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

Food fest #2

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

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

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

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

Party girl

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

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

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

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

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

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

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

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

Love you forever

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

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

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

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

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

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

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

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

Strange bedfellows

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

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

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

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

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

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

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

Just a few words

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

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

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

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

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

Stark realities while the sun continues to shine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bob and Ted and Carol and Alice

Photo: Yaron and Liylah Gilly sitting


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

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

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

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

Dinner (and a show?)

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

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

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

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

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

Freezing raincheck

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

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

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

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

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

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

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

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

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

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