Nuts and bolts

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

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

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

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

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

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

So many questions, so few answers

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

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

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

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

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

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

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

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

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

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

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

On the ball; No time to weight

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

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

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

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

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

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

Double feature

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

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

Taking charge

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

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

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

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

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

Rough road

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

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

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

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

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

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

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

Return of the blog

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

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

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

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

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

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

Experiencing technical diffiulties...please stand by

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

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

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

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

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

Love potion #9

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Status quo

No changes today at all.

Chicken (Gilly’s suggested title)

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

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

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

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

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

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

Moving in the right direction

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

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

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

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

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

Campaign season

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

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

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

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

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

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

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

Home from the Biosphere? The jury is still out

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

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

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

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

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

Sleep tight

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

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

Goodnight Gill. Sleep tight.

On duty

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

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

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

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

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

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

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

Still gaining

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

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

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

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

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

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

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

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

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

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

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

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

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

Let's hear it for 5 day weekends

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

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

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

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

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

Money in the bank

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

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

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

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

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

My children to the rescue

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

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

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

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

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

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

Tires

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

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

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

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

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

Slow down, you move too fast

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The beginning of Noam's blog-writing career

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

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

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

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

That’s pretty much it for today!

“DING DONG!”

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