The last two months of Michael's battle with advanced Parkinson's disease have been more challenging than usual. Two hospital visits for a bowel obstruction (aka serious constipation) and severe breathing issues, a severe kidney/urinary tract infection and now a cold have been Michael's burden. We just seem to get back on our feet from one crisis when another follows quickly on its heels, leaving Michael even weaker each time. I have often said that with each crisis he seems to take two steps backwards, then one step forward, never quite returning to the pre-crisis state of health. What we have seen over the past year is a steady drop in his weight (30 lb. loss), a corresponding loss of appetite, less energy, more serious and frequent falls, more limited mobility and an overall decline in his general health. Hallucinations are becoming commonplace where before they were isolated to health crises, and confusion is increasing. Michael doesn't really become at all functional now until about two in the afternoon and is ready for bed by eight at night with many naps in between.
Michael's level of care has increased to the point that I must be that much more vigilant when he is mobile those few hours a day. Until recently I could leave the room comfortably and engage in a small project such as housework, cooking, gardening, writing, talking on the phone, but I must now be even more alert to potential problems. There is this new breathing issue that requires nearly constant awareness. There are bathroom issues. There is help with food and mobility. There is the nearly constant assistance he needs with the television which has become a huge mystery for him but as it is his only source of entertainment, I need to be alert to any trouble he gets into with channel changing or I will find him "fixing" the problem in an entirely inappropriate and usually destructive way.
As it has always been, it is my responsibility to change with the disease and adjust my approach to situations as they change day to day. I am usually very quick to adapt and like to think of myself as easily going with the flow. But lately I am finding the constant changes difficult to keep up with. Repeated sleeplessness makes me cranky and the mounting demands leave me frustrated sometimes.
This past weekend I awoke to yet another grey and damp Saturday morning and to the prospect of no respite all weekend. The desperation overwhelmed me and I found myself talking to my poor sick husband about my fatigue. I rarely discuss my own problems with him but suffering from a mild cold myself and feeling resentful that I could not take a moment to pamper myself, I felt I had reached the end of my rope. I told Michael that I might have to think more seriously about longterm care for him. He was mute through my tirade. I'm not sure he took any of it on board. Though the release of tears did me a lot of good, I desperately hope he has forgotten the entire conversation.
I find myself doing very little beyond the basics of keeping the house in order, cooking the meals and taking care of Michael. Anything I enjoy has been abandoned. I am watching a lot of television because it seems to be the only thing we can do together now. I just cannot seem to get interested in much else.
But when people miraculously showed up on the weekend after all when I was expecting no one, I realized that the support continues to be out there and I need to make the effort to get some projects going throughout what will probably be another harsh winter (we live in Canada, after all): abandon the boring knitting project that has lasted an entire year and gotten nowhere and find another more interesting pattern; get back on track with exercising as soon as I get some sleep banked; dust off my sewing machine and get something, anything going on that; overcome my reluctance to use my newish digital camera; scan older photos to share with people; maybe pursue more writing projects; find interesting books to read; anything that can fill my time within the confines of this house.
My parents came to this country from England 53 years ago when I was an infant and settled in remote small towns in Alberta and British Columbia where sometimes modern conveniences were non-existent (including plumbing in one community) and domestic labour for my mother was all-consuming. And yet, I never heard her complain about her isolation. She was always hard at work and found great satisfaction in her sewing, knitting, reading and community involvement when harsh weather conditions allowed. I believe she even found great satisfaction in her various and many domestic chores. She never drove and spent many, many days on end confined to small, cold houses with sometimes even limited telephone contact with the outside world. She was a very intelligent person and truly a pioneer woman, making the most of what was often a very difficult life.
It is her spirit I summon when I feel most alone and overwhelmed. I hear her firmly but patiently telling me to just get on with it and not complain.