murder is not an option
We had a few people in chat today and we were talking I think about severe strokes, such as Sarah's Gary had and for some reason I typed the title of this blog at the end of the sentence I was typing. I think I shocked myself when I saw it on the screen and wondered why it had popped into my mind. It could be that we have had hints of the old euthanasia campaign back on tv talk shows and I read an article in an old Readers Digest on a mother who "euthanased" her disabled son. It is a big topic and one I don't want to cause a fuss over but we need to think about it from time to time.
I wonder as a caregiver if I do harm sometimes when I tell Ray things. Like all caregivers I find it hard to break it to Ray that I am booking him into respite again. I know a break allows me to wind down, lower stress levels, even have some pleasant experiences like when I've visited my daughter and family on my own. But in a way it also subjects Ray to a life not of his choosing. He survives, even thrives on the experience but he wouldn't, on his own, choose it. I wonder in an ideal world if we would find another way of dealing with the situation?
I recently brought home a photo of my Mum one of the aides gave me, she is "dancing" with a lovely young girl who is great with all the oldies. Mum has her hands out but her head is hanging down is what is not usually a natural position for dancing. I guess the smile on her face looks more like a grimace but I can tell by the twinkle in the eye the camera can see that she is enjoying it. I have seen this happen to others too, the concentration of just standing on their feet and swaying to the music overlays the pleasure they obviously feel.
For some reason our son looked at the photo and said "I never want to end up like this, someone should put me out of my misery first." He is young and so isn't fully of the understanding that we cling on to life at all costs. I hate to see Mum like that too, but when I sit with her and she smiles at me or giggles or does anything to remind me of the personality caught in that worn out body then I rejoice that she is still here. I love my mum.
I sometimes wonder what the purpose of the caregivers life is. On some levels it is obvious - one-on-one care is the best, staying at home is what we all want, keeping our spouse, partner or parent at home for as long as possible is what we are all trying to achieve. How often do you hear someone say: "they can carry me out of here in a box" an expressed wish to die in their own home. But with modern medicine and procedures like heart transplants, bypasses etc are we extending life to a point where we don't die of one thing only to prolong a life that becomes of no known worth? It is certainly a modern dilemma.
Now add the fact that we no longer have the village system where extended families all pitched in to look after each other. Our children often go far away from home, like my Shirley and her family living 1700 miles away, and often both people in a couple work and that means fewer family members actually available to help care for their invalided and disabled parent, spouse or adult child. So the burden of caregiving often falls to a single person in the family, sometimes like me the one person looking after parents and spouse or child. A really big burden to bear on your own. And society seems oblivious to the fact that a lot of outside help is needed if this trend is to continue.
I am one of the lucky ones, I am younger than a lot of people looking after a stroke survivor, I have the experience gained by my Lifeline Counselling courses and the Chaplaincy course so I have the right mid-set. I am able to stay home full time with Ray and don't have to go out and work so that is one less complication. I do however have all the feelings of entrapment and isolation from main stream society that often goes with the caregiver role. I have to make the choice to stay, day-by-day, and so far, so good.
And so it does come down to choice I suppose. A caregiver chooses to stay. Whatever the pressure from inside and outside, he or she stays. There are a lot of circumstances where this is just not possible so an alternate has to be found. Someone else caregiving, paid carers, a SNF, nursing home, group home etc. Some other way of looking after a person who needs 24/7/365 care. Some people are capable of making the choice for themselves, some are left with kin making the choice, I guess for some it falls to a guardianship board or some other body to make the choice on their behalf.
I'll look after Ray as long as I am physically and mentally able to. I'll try and get the help I need as I need it to make this possible. I will try to take regular breaks, no matter that some times I feel guilty when I do so. If I break down who else will step up to the plate and take care of him?
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