I have several new chores that weren't part of my life until a few months ago, a mixture of care giving, hunter-gathering provisions, and housework like making beds, washing dishes, preparing part or all of the meals. I make a good gourmet salad, roast a chicken with tasty stuffing, but I have a lot more to learn about cooking. Generous neighbours, our kids, and Meals on Wheels mean that I don't have as much meal-preparation as I anticipated; and I'm grateful for this. Janet Wendy insists on doing some of these chores herself, despite my nagging at her to conserve her energy for the highest priority things she wants to do; but she is slowly adjusting to letting me do more of the chores without feeling guilty about not doing them herself. We have a cleaning lady once a week for the heavy laundry and vacuuming, and have talked about but haven't yet got Molly Maids to come up from time to time to give the place a good sprucing-up. I wash our 'smalls' once a week in the light washing machine in our apartment, and drape most of them over the Ikea drying rack rather than putting them in the dryer, which I reserve for a few selected items.
My day begins after I'm up and dressed with the first of four daily uses of a resuscitation bag to inflate Wendy's lungs to the maximum. Her weakened chest muscles can't suck enough air in to inflate her lungs fully, and without this daily regimen she could suffer segmental lung collapse and greatly increased risk of pneumonia. I repeat this process before lunch, before our evening meal, and last thing before bed, when I also put in eye drops that help to keep glaucoma at bay. After that first morning blow-up, I accompany her to the swimming pool in our basement and stay with her while she has a short swim ( side-to-side across the pool now, instead of laps up and down as she did when she was fit); sadly, I can't get into the pool with her at present because my eczema has flared up, as it usually does in the dry winter air, and the chemically treated pool water plays havoc with it.
We are discovering what an impressive range of community support services Ottawa provides. The social safety net is tax-supported, so much of what we receive is paid for by our taxes. We have regular home visits by a nurse-clinician, a physiotherapist, an occupational therapist, occasional visits from a representative of the ALS Society who advises us on various items of equipment to make life easier. Once a month or thereabouts we are visited by a palliative care physician, a warmly compassionate woman who was one of my students years ago; she is wise and reassuring, reminding us that this is a gentle, easy way to leave this life: ALS is painless, it doesn't impair the mind, and just causes increasing tiredness, so Wendy sleeps a lot. One day she will simply go to sleep and not wake up. It would be a horrible disease if it struck when she was young or when she was middle-aged; but in the mid-80s or thereabouts, when there are so many really unpleasant ways to die, this strikes both of us as preferable. She has a very handy 4-wheel walker, although she doesn't always remember to use it; a device called a bed-helper that makes it easier to get in and out of bed and to turn over, and among other things, a useful rotating cushion on her seat in the car so she can swing her legs around more easily when she gets in and out of the car.
Of course her muscle weakness is progressively getting more profound. The disease first affected her neck muscles and her hands, and both have become progressively weaker so her chin has sunk to her chest and she can't do some of the simple things that she used to do without even thinking about them. I rather often have to do up buttons - which makes a change from undoing them, as I tried and sometimes succeeded in doing 54-55 years ago when we were courting. She has some strategically placed bits of velcro on her winter coat, and several other adaptations to make life easier. Most important, she is in good spirits most of the time. She does get a bit weepy sometimes; she has always been inclined to cry easily, but her weepiness now is actually a feature of ALS, according to the neurologist who diagnosed it. She still gets about a good deal on her feet, but her leg muscles are beginning to get a little weaker. We both hope she stays mobile for a long while, although she speaks wistfully about terrorizing the neighbourhood from her electric wheelchair. I hope it will e a long time, if ever, before she needs this, because if and when her legs stop working, her horizons will shrink considerably.
So we go on, one day at a time, relishing each as best we can.
So we go on, one day at a time, relishing each as best we can.
Monday, February 22, 2010
Day 1: Feb 22 2010
This was my very first post, which got lost when I first posted it. Now, mysteriously, it's come back, out of sequence. It was my first attempt to record some of the events in the lives of Janet Wendy Last and myself. We began our married lives in Adelaide, South Australia early in 1957, having met about 18 months earlier in circumstances I have described publicly twice, first in a CBC Radio broadcast on our 40th wedding anniversary in 1997, then in a little speech at our 50th wedding anniversary banquet. Later I inserted one of those anecdotes in this blog. We have moved about quite a lot in our married lives, though not as much as many immigrant Canadians. I will insert from time to time a few pictures of us at various stages in our lives. Here on the left is a photo of us at Cochem Castle on the Moselle River in Germany, on our European holiday in 2007. That turned out to be our last European holiday, indeed our last holiday.
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