Who cares for the carer?
I want to live, as much as any person. I have much to live for. I don't give up easily; not while there's a manageable quality of life.
"You surely want to die at home, don't you?" was the question put to me – by a doctor, three years ago.
There is a constant theme in much of the discussion about death which comes back to this notion.
For quite some time I nursed this romantic idea. There's a large window in the bedroom and a cherry tree outside. It's alive with birds and greenery.
Well, it was a few weeks ago, but now the pale yellow leaves are curling and dropping. It has no attraction for birds, and is far from a romantic vision, except that its winter skeleton may turn out pleasing aesthetically with a deep blue sky behind it.
As with many romantic visions, there is one vital thing missing from it that is far from romantic, and which seems completely ignored by any discussion I've seen so far.
If I tried to follow that path of dying at home, who exactly is going to do all the caring, 24 hours a day, 7 days a week, for an indeterminate period of time that could stretch into months or even longer?
I can't speak for others who may cherish this romantic notion and whose circumstances may differ radically – only for myself.
For me, only one person could do the worst of that, and only up to a point. Some nights I am up several times. That could be avoided, at the price of turning me into a complete invalid. But Tracey would still need to be on hand every minute through the night. She'd need to sleep in the same room as a restless patient, prepared for anything at a moment's notice. Absolutely anything, including a stroke, heart attack, seizures, and toileting.
We have already seen what a superhuman effort it took mid-last year for Tracey to get me from the bathroom, where I fell, to the bed, just a couple of metres away. It would be impossible now. Everything is that much harder.
Even now, there are scores of little things that collectively take up time and energy of a carer as assiduous as Tracey is, when I'm incapable of many of the simplest elements of self-care. I can't even open a jamjar. I can barely make tea, and that with great effort.
But there is one big exception to that which may change at any time. Except for showering, I can manage all other bathroom operations – with absolute concentration and care at each step (literally and figuratively). When or if that shred of independence is taken from me, the game changes completely. That's when someone has to be on hand 24 hours a day, right there when needed.
It may be possible for a limited period for Tracey to attend me 24 hours a day, if I'm cooperative and reasonably lucid, or when there's time to adapt to new circumstances, but ultimately it will become too much. It could become too much almost immediately.
With my condition, anything can happen as deterioration occurs. I won't spell the possibilities out so use your imagination in the case of a brain tumour, but include dementia, paranoia, personality changes, psychopathic episodes and wild mood swings.
The relentless demands on the primary carer are what I didn't include in my romantic plan, and I have no intention of being responsible for the total breakdown of health of the one who has looked after me with such insight and forethought for more than three years following diagnosis and treatment.
All of this has taken place right here at home, apart from two months I was in Melbourne at the beginning of 2010. Tracey has looked after me with great love and care, for c. 1300 days. More than 30,000 hours – so far. And that's what you might call the "easy" part compared to what's likely to be ahead. More and more will be demanded of her.
"Home care can be arranged" is often said. Not in this house it won't. Nor do I desire it, after a certain uncertain point. If other people have to be around daily coming in and out as I decline, then there is neither romance nor comfort nor safety in it.
There are facilities designed for these circumstances which can save us all from that hardship and much of the indignity. We will put into operation planned arrangements if and when the time comes.
I remember that one of the main criticisms of the article I mentioned in Part 1 was that it did not deal with hospice care. The author responded that his piece was about what happened before it came to that, if it had to, so some injustice has been done to him for not adding it to his description of care.
But he did not address the question that stood out to me like a devil's tail after the romantic vision faded – the plight of the carer in dealing with their partner dying at home; especially a carer whose deeply emotional involvement constantly moves them towards the edge.
The other thing I wanted to mention concerns visitors, when it comes near to the end point. For some, there seems to be a notion that the number of people around the dying person is directly proportional to their degree of solace. Not for me. Quite the reverse.
|I'm not Abraham Lincoln, and presidential death is political, but please, not this.|
|George Washington's death in the artist's eye; more romantic but far too many about.|
Your reasons don't count. Your religious or philosophical beliefs about life and dying are irrelevant to me. Already religion through legal device intrudes starkly way too much in a highly personal matter. Save those for your own death, but please don't interfere in mine.
I'm with the doctors.
There is much more to say, and I've decided not to, but the final part of this series is an edited collection of the best responses to this programme. I'll put in bold face the strongest points within those. It's worth having a brief look, at least, when I post it shortly. I'd also recommend a new posting by our friend, Anne Powles: 'Life and death'.
Finally, I conclude with one of the comments I liked best. You'll see why, I'm sure, if you read right to the end of this quote.
Not surprising in the least. Quality, not quantity....I've grieved for my terminally ill patients going through these procedures, prolonging life at the expense of comfort both emotional and physical, often times more so than I have grieved at their final passing. I have wept over to the fear of possibly being that patient myself. I feel strongly that my medical education and experience gives me a clear perspective in decisions that I make to forgo these procedures myself, as most the doctors surveyed for this piece. As a doctor I have sworn an oath to do no harm, and in my mind, allowing a peaceful death and shortening suffering in the conditions outlined above fall well within that jurisdiction.
I am veterinarian. Jan. 17 2013 06:47 PM