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Tuesday, January 24, 2012

Be It Resolved.

It's January and there has been a lot of snow over the past few weeks, some of it encrusted with a layer of ice requiring extra effort to remove it. Bitter winds. Playful dog getting in the way. Arthritic fingers throbbing from the repeated abuse of shoveling. Wondering if I can, if I want to, keep up the work on this house, my home, with a full time caregiving job. Winter is always a challenging time, isolation sometimes overwhelming especially with fewer days of respite; most weekends, some three long days, are the hardest with often no human contact other than the telephone/computer variety. Michael is weaker, quieter, crazier these days, occasionally breaking free in dangerously cold weather to flee down the driveway, inadequately dressed, escape all too easy out a basement door to the outside when I am distracted. I am amazed how he can go from a near-comatose state sprawled out on the couch to full mobility, full speed escape even now. Going out together on outings is more difficult than ever or maybe just in my head, so we don't. Car rarely leaves the driveway. Only 80 km logged since Christmas time. Great for the environment, not so great for state of mind.

My internal debate has resumed, if it ever stopped, always more fervent at this time of year: Be it resolved that Michael's care is better at home than in a care facility. Arguing volubly "For" is Claire the Ardent Caregiver. Arguing "Against", with far less conviction to make a cogent argument on her own behalf, is Claire the Tired Wife. Here are the questions being lobbed with some force from the Pro Side:

Who would do nightly prayers with him, an essential part of a calm night for him?

Who would patiently (but only after a deep breath) get up to the clanging of his whistle-alarm in the night to reassure him that all is well?

Who would tailor his medications to his needs rather than adhering to the strict schedules of an institution?

Who would allow him to walk as freely as he can in the house despite many falls, not worrying about litigious action?

Who would be there to rescue him from the obstacles of the television remote control, an act repeated many, many times each day?

Who would be there to monitor the subtle cues and clues he gives each day, often silently, a language that has taken me this long to decipher? Clues that tell me he is in distress when he cannot speak. Cues to his need for medication or assistance right now. He would never be able to figure out a simple call button to summon help, a man who can no longer use the telephone, remote control or any other electronic device.

Who would make him his favourite foods when he will eat nothing else, prepare a cup of tea or a snack at odd times of the day? Who would monitor his digestive functions as closely as I do?

Where would the loving, loyal dogs be who frequently demand that he pet them and give them attention, often unlocking a trance he has fallen into?

Where would all his familiar touchstones be that keep him as grounded as he can be these days? Things like the familiar trees in the front of our house that he gazes at for long periods, watching all the life therein. Or just watching the passersby on our road, seeing people come and go.

The answers to all of these questions very strongly support the case for Michael to stay put at home. Add to that the fact that I have seen life up close in an institution. I know how it goes. They are not bad places, and they provide a valuable service for those who have nobody else to care for them or whose care needs are impossible to manage at home. But they are less than perfect. They are chronically understaffed. Residents, especially those with mobility problems, spend long periods of time alone in their sterile rooms often in soiled diapers. If dementia is an issue, a resident like Michael might not even be able to understand how to summon help if needed. There are often residents who are coping with personality changes from the ravages of Alzheimer's, making them aggressive, sometimes violent and a very real threat to others. It can be a terrifying experience for many. I would guess that a lot of calming medication is used for the residents and maybe even the staff.

The guilt I feel at even contemplating such a decision is overwhelming and I know in my heart that life won't necessarily be any easier for me either.  I know myself too well. If the staff in a care facility call upon me to help out - and they would if past experience is anything to go on - when Michael inevitably steps over the cliff into full insanity, I will step up to ease his pain and theirs because he can be completely unmanageable, even violent. I could find myself at his side all the time because I know I am the only one to calm his panic unless staff keep him permanently and heavily sedated and restrained. In the past, restraint has meant tying him up in bed, flat on his back unable to move for hours on end, or tied up in a chair from which he attempts to escape, always harming himself. Yes, I might have the freedom to do a few things by myself without requiring someone on board here at home, but I will be on the road all the time traveling the considerable distance up the highway to help out with his care. Many have argued that surely Michael would adjust.  All past experience when Michael has been hospitalized has shown that his mental condition worsens the longer he is incarcerated. I could only expect the same in a nursing home.

Maybe I need to consider a move to ease the frustration of balancing onerous caregiving duties and home maintenance. But the effort required to even think the thought is exhausting. And there is no accommodation in our community that would suit his needs; no condominiums, no apartments, no accessible housing with small, low maintenance yards. This house suits him perfectly, if only I can manage. I would have to leave the community altogether to find anything better and that I am not ready to do yet.  My friends are here, my support network. We are well located next to amenities making shopping for the essentials quick and easy, my volunteer work just steps away. These considerations do not even include how such a huge change - any change - would inevitably push Michael over the edge.

Besides, I don't want to escape my home, just, some days, my situation. To not hear the incessant crashes to the floor with almost every step he makes, a sound that most of the time doesn't even elicit a wince from me but on occasion I cringe and brace myself for what must be severe injury.  It never is. At home he has fallen thousands of times throughout this disease. Thousands. But he is still independent enough to make that one small decision in his life, to get up and move if he wants to even if it means hurting himself. If he were in an institution, he'd never be allowed to fall so much. Liability issues would override.

Another consideration is the cost of institutional care. I can afford it, I think, but it will mean more fiscal restraint to manage the high cost of care.  My round-the-clock services are free. We have two weddings this year and have committed a small, but not insignificant, amount to each offspring to help with their costs. We live on a reasonable pension but I would have to consider re-entering the workforce which, after being out of it for 30-plus years, is daunting to say the least. A degree in English Literature has never been a ticket to a lucrative job, even less so added to so many years of unpaid domestic work. I am severely out-of-touch with new technological advances in the modern libraries, a revolution that was just beginning when I left the profession.  Besides, in those days, a degree in English was considered enough education for the job.  I'd have to go back to school to qualify now. UGH. I don't think I'd enjoy that any more than when I did it the first time, not to mention the stress it would add.

Whether I ever take the plunge and make that phone call to place Michael remains to be seen. For now the debate continues as a loud chattering in my brain where it must stay. I know where many friends and family members stand on the issue, so sharing the conversation at this point would serve no purpose. I trust I will know on my own when it's time, when the noise is finally silenced, the guilt assuaged. For now Michael's needs supersede my own.

For now I will simply change the topic: Be it resolved that we are both better off maintaining the status quo.

* Lovis Corinth, Vater Franz Heinrich Corinth auf dem Krankenlager


  1. Claire, can't help but wonder, can't you get a few hours of homecare each week (paid for or not) so you can get out of the house now and again? I often tell myself that in the future, if I could have one to two hours a day to myself, I will be able to cope.

    By the way, I have been reading your blog for about 2 years now and it has been a wonderful support. Always glad to see a new posting.

    1. Hi Terri

      Thank you for your comment and your ongoing support of my blog. It is very much appreciated.

      Yes, I do get out up to 12 hours per week and for which I am eternally grateful. It's Canadian winters that are so long and dark and isolating that make me a wee bit crazy. Cabin fever and lots of snow to shovel!

  2. My husband passed away 5 years ago from a malignant brain tumor that ravished his whole body in a year and a few weeks after diagnoses.
    I have been in your shoes. I would have done anything to keep him with me for as long as possible. His seizures were devastating but we did have some good moments together. However, now, I have found I have Parkinson's disease with the wild blood pressure swings
    that you describe. I look pretty good for two or three weeks and even took intensive physical therapy. However, the blood pressure rises always come back followed by the drop just like your husband's. It is called autonomic instability. I have found increasing my blood pressure medicine by very small amounts at a time to keep the rush of blood pressure in the first place, limits the lows. Also, there are triggers to the rushes, such as, getting too hot, eating too much salt, eating too much food at one time, drinking too much water at one time, standing in one spot too long, etc. It is a battle but I do continue to enjoy each good day I have. What keeps me going is to wish to be with my eight grandchildren who all live out of town and love to come visit. What I have learned from these experiences is that none of us are going to live forever and we all will eventually be afflicted with something. Doctors are only as good as the compassion and knowledge they can exhibit. One does not work without the other. Enjoy each day you have with your husband and please get some home health care so you can get out a couple days each week:)