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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.

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