Dementia death

A couple of times I've come across statements online to the effect that deaths from dementia are uniquely horrible. I know some people with dementia do, sadly, die in pain and torment. But many do not. I've written here about my mum's 'dementia death'. I have also read many accounts of the dying moments of people with dementia and some of them clearly just faded away. Indeed, some of them die in their sleep just as some people without dementia do,

People have also stated that what makes the death of a person who has dementia uniquely awful is the way in which loved ones lose the person 'bit by bit'. Of course, this is true in one sense but it's also true that some families find that they can still find and communicate with 'the essence of the person' right up until their death,

It is also true that there are many other truly horrible ways to die. I do not need to spell them out here.

So whilst I understand that the last days or hours of a loved one dying from dementia can sometimes be truly dreadful, I don't see that there is anything to be gained from expecting it to be or claiming that it always is.

What does it feel like to die?

Living in the dementia world you cannot escape thinking about death. Regularly, you read online about the end if life experience of people with dementia and their carers.  Similarly, people you meet at the various activities you attend disappear from time to time and months or sometimes weeks later we hear of their passing.

And everyone who cares for a person with dementia knows that they are likely to have to face the death of the person they are keeping alive, unless their own death comes first.

I came across this interesting article which seems to offer some comfort for those who believe in life after death but also to those who would find the inevitability of their own death easier to accept if there was a fair chance that it could be painless, peaceful and, even, uplifting.

Some people with dementia do just fade away peacefully

In this dementia awareness week, I feel it's important to try to make sure that people have a balanced view about the effects of dementia.  I spend a lot of time reading heart-rending accounts of the real suffering of people with dementia and their carers and the final part of the dementia journey is often a dreadful experience for them.

Without denying their experience, I want to share a little information about my mum's journey to show that some people with dementia do remain contented in the 'end of life' stage and die peacefully.

This photo was taken just after my mum's 90th birthday:

She died 3 months later (AD on the death certificate). At that point she had been bed-ridden for getting on for 2 years. We saw her a few days before she died.  She was still smiling.  Her later years were spent in a Methodist Home for the Aged. Although they didn't normally look after people with advanced dementia, they were happy for her to see out her days in their care because she had contributed so much, always helping new residents to settle in, for example. They looked after her very well. She died peacefully.

She was, comparatively, lucky. So were we.

Anxiety and hypochondria

I have read posts by several carers for people living with dementia which mention that they, the carers, have an ever-present fear of getting dementia.  Usually the simplest common memory lapse will activate this fear.

Sometimes, when they have parents or siblings with dementia they worry about the possible genetic links, but often it's their knowledge of how common dementia is that causes the worry.

I don't have this particular worry  -  despite the fact that my mum had Alzheimer's  -  though I have, and have always had, a degree of hypochondria and, at a few points in my life, I've been convinced that I was dying.  Obviously, I was mistaken (except that we're all dying)!

Now that my life is largely involved with keeping someone I love alive, I worry about my own health in a different way.  I'm concerned not just about my own future, but also the effect any health problem may have on my wife.

Also, of course, as one gets old, and more and more friends and acquaintances fall by the wayside, real health issues, whether serious or trivial, tend to increase.

It all comes down to the well-worn cliche about taking each day as it comes.  It's not easy, but it makes sense.

Is this inevitable?

On an online forum, someone who, along with other family members, is looking after Mum who has dementia, is asking whether it is inevitable that she will cease to recognise them at some stage.

My thoughts are that almost nothing is inevitable, except death - and the person we are caring for might die today, as might we.

I've always been a bit anxious so if I allow myself I can think of any number of horrific scenarios. You don't even need to imagine them these days, you can if you wish read blow-by-blow accounts of carers' experiences in real time.

What we have to try and do is, as people keep repeating, to live in the moment, like so many of the people we're caring for do.

I actually find the thought that everyone is different and everything is unpredictable a consolation.  How would anyone cope if all people with dementia followed exactly the same path, on the same sort of timetable, via a series of known and minutely documented horrors towards their extinction?

And, by the way, it certainly isn't inevitable that Mum will fail to recognise her family.