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Wednesday, March 24, 2010


I think I've reached a watershed moment. I came to a decision tonight and whether I ever follow through remains to be seen, but I think the first step has been taken and perhaps that will make the second one easier.

It was an ordinary day which is both good and bad. Good because there were no surprises and the day unfolded as it always does: get Michael up in the morning, clean him, dress him and feed him all before his medication runs out and he needs to fall back to sleep until lunch. Some mornings it's a race to beat the medication which can last only a few minutes before he succumbs to a near-comatose state for the rest of the morning. Today my caregiver only had an hour to spare early this morning which I greedily grabbed to get out and walk the dogs, so I had even less time to rush about getting Michael up and fed before I set out. The rest of the day was ordinary too, lots of sleep and television, a short walk, a few minutes outside while Michael valiantly attempted to do some yard work before his meds wore off - 10 minutes - but it was so nice to see him enjoying the outdoors. It was a quiet, uneventful day.

But it was a quiet, uneventful day and sometimes that is the problem. Today I had a lot of domestic worries floating around in my brain, nothing serious but as the day wore on and I had so much time to think, these problems loomed larger. I gave them far more attention than they merit. By mid-evening my worries escalated to a near frenzy and I found myself experiencing a rare panic attack. Now, as panic attacks go it didn't hold a candle to Michael's and I do him a disservice even calling my experience by the same name but it did feel like panic. I parked Michael in front of a hockey game and took myself off for a restorative, calming hot bath to shed a few quiet tears and feel sorry for myself, all the while leaving the door open so I could hear Michael, just in case. While there I came to a conclusion: I need a break.

Michael came home from the hospital November 27 and since then, except for a few hours a week of respite, for which I am extremely grateful, I have been at this job incessantly; every morning, evening and all but a few daytime hours. And during those hours we are usually alone together in this big house. I am happy to have two cheerful dogs who seem very pleased to have me chat away to them which is good because that's how isolating this job is; I'm reduced to conversing with my dogs. And they are real one-way conversations I have, something that is both laughable and disturbing!

I have been reluctant to even consider the possibility of taking an evening off because night can be a difficult time for Michael. Evening is when he is most likely to have a mental health melt-down and the night hours themselves can be very troublesome and disturbing. My fear is that by not being here if he has an attack, it might be a more severe one and if he's in institutional respite care I am nearly certain he will go over the edge because that is what has happened every time he has been hospitalized. It is not ego speaking when I say I have so far been the only person to be able to come close to calming his extreme agitations. It is a very severe and dangerous situation and I worry that if I go away for a night or two I will come back to a worsened condition than I am dealing with at present which, after months of adjusting to a heavy neuroleptic drug to control his psychosis, is fairly calm. Do I really want to rock the boat?

But tonight was a rare event for me. Perhaps four straight months of intensive care is finally wearing me down and that's on top of several years of moderate to intensive care. I think I am processing what I already know, that to not take a break from this job could be disastrous to my health. And what's disastrous for my health is disastrous for Michael's health.

So I'm thinking about a single night in a respite care facility for him, and for me, a night on my own. If I stay at home then I can abort the mission if he gets terribly out of control but if it works and he's okay, then I might pluck up my courage and try a night away somewhere. I'd really love to go to my daughter's university graduation in June, a simple overnight trip alone but a near-impossibility with Michael. Then if that works perhaps I'd have the courage to attempt a visit to other offspring in Toronto for a whole weekend.

I'm excited thinking about the possibilities and that is a powerful motivator. But one step at a time and tomorrow I start researching respite care facilities.

Saturday, March 13, 2010


It's 1:30 a.m. and I am still awake. This causes me some anxiety because my day could begin very early or my sleep be very disturbed depending on Michael's night. But I did it to myself today. I was hell-bent on getting the income tax forms completed. Why the rush, I can't tell you, but once I embarked on the project I was eager to see the end of it.

I rarely allow much time for intellectual pursuits. By the time my day ends I am usually ready to fall into bed, instantly asleep, probably from succumbing to the numbing effect of the television, Michael's preferred activity, that blares most of the day. He has maybe two or three hours a day where he is ambulatory so the television is his eye on the world when he has to be glued to the couch or wheelchair. I endure the incessant drone in the background, keeping myself busy with the running of the household which involves dozens, if not hundreds, of small tasks every day. If I sit for any period of time with a book or in front of the TV I'm asleep in seconds.

So the intellectual challenge of the taxes at first filled me with trepidation as it did last year, the first year I had ever tackled this household chore. Michael used to do it years ago but when it became very obvious that his cognitive skills had degenerated significantly, I, as tactfully as possible, suggested we hand the whole mess over to an accountant. It seemed especially appropriate to do so at that time since, with his sudden departure from work in 2003, there were drastic changes in our income and taxes anyway, complicating the process for him even more.

But last year I looked at the previous year's bill from the accountant and blanched. We could hardly spare that extra money with Michael's medical costs increasing (even though I now know they provide fodder for tax deductions). How hard could it be? Besides, my brother assured me that even if you screw things up, CRA and Revenu Quebec will sort it out for you. I would hardly say I embraced the task but I did approach it with some intellectual curiosity, resolving that if I really couldn't manage I'd bail and hand over to an accountant.

I plodded through things slowly, doing every family member's forms old-school; pen and paper. I had to. I need to see the numbers spread out before me on the page. I need to have that tactile connection to a task, I always have. I needed the guide books spread out on the table, handy for quick reference. And I didn't trust myself to handle, not only the steep learning curve of doing the taxes for the first time, but also learning how to use a new computer programme. Hey, I still do old-fashioned bookkeeping on top of my onlline banking because I never quite trust the computer.

I got through it and that was even with a broken right wrist that certainly slowed things down even further. The process was not only tactile but painful. And I did a fairly decent job, if I say so myself, with few errors.

This year I resolved to do the same but then my curiosity got the better of me and I
decided just to try out the online programme. Turns out I loved it - so much easier than last year's laborious method, but that slow tactile process certainly cemented the concepts into my slowing brain in a way the computer programme wouldn't have, doing all the calculations for me. That was okay for this year, though, because I at least had a basic understanding of the concepts now and could actually converse somewhat intelligently about things like capital gains and basic personal exemptions.

I immersed myself. The past few days have seen copious amounts of tea consumed and I found myself frighteningly oblivious to my other tasks. Michael was being made to wait for a trip to the washroom or even, one night, for his bedtime routine. When I finally surfaced long enough to pay attention to him, I found him perched on the side of his bed, half dressed, looking lost and exhausted. I had to shut things down immediately and attend to him. He looked up at me with sad, tired eyes, somehow acknowledging in that one look his absolute dependence on me for everything in his life. I felt chastened. I felt as though I had abandoned him for some frivolous affair.

On some level I must have known that I couldn't let this process drag out. This wasn't just a delicious challenge to engage my brain. There had to be a swift conclusion to this task. Better to have a concentrated sniper attack than a long drawn out, distracted affair. Once I got the damned things on their way I knew I wouldn't obsess about them any longer.

So, today was the day of completion, beginning as soon as I could this morning, punctuated by various caregiving tasks but wrapping up with a whoop of joy late afternoon. So satisfying. But clearly I cannot handle that much excitement because here I am at 2 a.m. and I'm wide awake.

What does a girl like me do for excitement? Her taxes.

Friday, March 5, 2010

The Fast

Today was day one for me of the Baha'i fast. It actually began at sunset on March 1 and will end at sunset on March 20 with Baha'is not eating or drinking during the daylight hours, sunrise to sunset. But mine only began today and might not even continue after tonight.

I have been a Baha'i for seventeen years and have never successfully made it through an entire fast. Until a few years ago my metabolism was so rapid that going for more than a few hours without food was impossible for me without passing out. I couldn't drive safely, couldn't function through my busy days with young homeschooled children. I now see some of my children with the same problem, having to eat constantly all day but remaining thin as rakes. I used to be able to eat my husband under the table all the while staying very thin myself. I consumed a lot of calories and burned them all up. To anybody who questioned whether I or my children were anorexic I suggested to them that they come and join us for a meal sometime. (Why are people so comfortable challenging extremely thin people about their weight?)

That all changed a few years ago with incipient middle age and change-of-life. Things slowed down; my life, my body, my metabolism. My kids no longer made physical demands on me so now I really had no excuse. I discovered I finally could observe the fast which was a relief because I had found myself consumed with guilt every year that I consumed my way through the fast. I was painfully aware of every bite that slid down my throat throughout the daytime. My guilt was self-imposed only. My Baha'i friends urged me to relax, not to worry. But worry I did and when I could finally manage to get through at least some of the fast it felt great, restorative.

But things have changed again. Last year I broke my wrist just before the fast and we had a death in the family. Getting up before dawn every day after painful wakeful nights just wasn't an option. And I couldn't do much for myself but had to nonetheless. Feeding myself, doing almost anything for myself became an arduous task so I gave up and once again ate my way through the fast. As a primary caregiver I couldn't take a break from my duties and every task took a long time to complete left-handed.

This year poses similar challenges. My nights rarely allow me a full sleep. If I am not up to check on some problem of Michael's I am usually at least awakened a few times by his yelling and sleep-talking. I wake up fully alert and listen to the monitor that transmits every sound he makes right to my bedside, a mixed blessing. If his noises seem anxious I act promptly because to ignore him if he is in an agitated state means an even more disturbed night calming him down. If he is just chatting fairly amiably to himself and sounds calm I try to drift back to sleep but keep an ear cocked in case things worsen. They sometimes do. So trying to fast and get by on little sleep just didn't seem wise as this year's fast approached.

Then there's the problem of trying to feed myself quietly enough not to disturb Michael or the dogs who, once awake, will then make sure everyone else in the house is awake too. This morning I crept downstairs at 5 am having been awoken by Michael's noises, quietly prepared a cold breakfast and slipped back upstairs to eat it, dogs in tow to sleep on my bed so as not to wake him up completely with their stirrings. I froze with cereal spoon mid-air as Michael made a few more noises over the monitor but I was able to gulp it down in peace and even managed to grab a few minutes more sleep before Michael woke up for the day. But after only a few hours of sleep from his disturbances and little food in my system, I was a bit of a wreck all day. And bad-tempered.

So the fast will have to be a day to day thing, like everything else in our lives, requiring reassessment every morning or even every hour if I have managed to at least start the day's fasting. I'm allowing myself to sleep till I wake up (or Michael does) because for now, adequate sleep is all that gets me through my day most days. And I think I have finally reached the point of not worrying about it anymore. My understanding of the fast is that "it is only a symbol, a reminder" of "abstinence from lust" and that "mere abstention from food has no effect on the spirit" ('Abdu'l-Baha, son of the founder of the Faith).

If there's one thing a caregiver is fully aware of it's abstinence from almost anything that's fun. God will understand if I need my strength from food and sleep to do my work. I hope.