A consumer's view on support during the dementia journey

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22 April, 2014

Soon it will be a year since my 'ex' - we shared this house - died from dementia. Or so the death certificate said.

From the very first, years ago, what has angered me is the total absence of a protocol requiring the medical profession to properly diagnose, and communicate to those directly affected, the onset of dementia. In fact the medical profession, always with certain exceptions of whom one is my urologist, are totally unwilling to communicate, or perhaps are incapable of communicating. It is almost as though they belong to the Order of Trappists.

Not once - NEVER - was Peggy formally diagnosed as a dementia patient. Not once - NEVER - was she referred to a specialist for evaluation. Not once - NEVER - was I told, nor was I advised, as to what the likely outcomes would be, and that included the onset of incontinence urinary and faecal. Not once - NEVER - was I asked whether I thought I could cope with those outcomes, not least because I was then already old. Those who should have done so would have known, or could easily have found out, that I was alone, with no family or relatives of any kind. In the event, everything happened on a 'make it up as you go along' basis.

As I discovered, what began as a series of 'oddities', of the kind that any one of us can demonstrate, gradually progressed to the point where, really, I could well have done with some assistance. Or at least a break. True, our Silver Chain organisation would come in each weekday morning, to give Peggy a shower. True, at some point when I had had to spend a few days in hospital because of eye problems, someone - friend, neighbour, or Silver Chain - arranged for Peel Crisis Respite Care to come for three nights, 'just in case', but what they may actually have done, I never knew. I rather doubt they would have had to deal with heavily soiled incontinence underwear, not once but two and three times during the night. I rather doubt that they would have had to clean a bathroom smothered in faeces, following what may have been a 'fit' of some kind. Again, not just once.

When my neighbour picked me up from the hospital, nothing particular was said; nor, when we got back to the house, was anything said. However, once I was indoors I asked where Peggy was, to be told that between them they had arranged for her to go into respite for two weeks. That was excellent, since had I been there I dare say I would have prevaricated. I looked forward to all of the things I would do during that time. In fact, I did nothing. I just did not realise that it was I who was in need of respite. That there had been a toll taken from being woken two and three times during the night, night after night, to then not just get Peggy back to bed but to get her cleaned up first. Although I didn't realise it, my friend and neighbours had recognised that I was becoming exhausted.

Speaking of getting her cleaned up, frequently I was reminded of my niece in England who, when caring for her father, my elder brother, in one e-mail commented that she was having to "go to places a daughter should not have to". I knew only too well what she meant! 

There is so much more I could write. I will however include one anecdote, to illustrate my disquiet with the medical lot. At some point a condition arose with Peggy that, really, needed to be looked at. I prevailed on Peggy's GP to come and see her. In due course this woman turned up - carrying an infant in her arms! No sign of a doctor's 'black bag'; I don't recall seeing a stethoscope. How on earth did she expect to perform an examination under those circumstances? She couldn't, and didn't, and I thought then and continue to think that she never intended to do so.

Had I the power, I would immediately, somehow or other, guarantee that a proper diagnosis is made, and that those who must care for the patient are made aware of all that it entails. I have the idea that the public at large think that caring for someone is making sure they have a cup of tea and a biscuit when they want it, and some conversation. If only they knew the rocky road that can lie ahead for the carer.

I must add: dementia, like Alzheimer's, is referred to as a disease. In the sense that it is neither infectious nor contagious, it is not a disease. As I have written elsewhere, it is an ugly, debilitating, degrading, at times for the carer, disgusting, remorseless ailment, for which there is neither cause nor cure. I won't say that I resented all that I was having to do, although most certainly I did not relish it. Since there was nobody else, put simply it was down to me to do it all, and keep on doing it. In due course, Peggy just had to go into a nursing home; there was no option. There was no rejoicing at the release from all that I had had to do, but I suppose there was a sense of relief. She could not have been in a better place.