I have just been watching Terry Pratchett’s program, on his first year of living with Alzheimers. A determination to see things as they are. To understand the journey.
His journey takes him to see a number of things that offer “cures”. From strange hats, to herbal medicines- but the journey ends with a visit to a good specialist care home in America, seeing how the illness can be managed and how individuals can be cared for in in the later stages of the disease.
All this is good to see. For Alzheimers sufferers now, and also for their carers the big problem is that this is all something that happens behind closed doors.
Perhaps one of the most illuminating things in this program was to see the face of Terriy’s assistant. He found it hard to see all this and to know that further down the line Terry will cease to be the person that he knows now.
Terry accepted it more calmly. He could see in a way it is not so bad. People live in the world of their minds, untroubled by what we see as “reality”, They live in the moment, with out the context of past or future, and this is something that he as a writer can imaginatively understand.
I saw this with my mother, though her dementia was quite different. There was no long build up to it. She never had the concern of knowing that her mind was going. There was a stroke, and her memory was simply gone, never to return, but if you managed to arrange the world in a way that did not conflict with her view of it, get things right for her, she was able to live quite happily, peacefully, with dignity.
One of the things that I have noticed in talking to people who have have been the witnesses to Alzheimers or other forms of dementia, is that it changes them a great deal. You cannot experience this without becoming very aware of the vulnerability of yourself, and of all the people that you meet.
The growing numbers of dementia sufferers will change society. If we continue to try ignoring it until it impacts on us personally, it will become an intolerable burden on those who are left trying to care. We will find that it impacts on the economy as more and more people have to drop out of work to begin caring. Many people will simply not be cared for at all well.
If we accept that dementia is a fact of life, and that caring for an elderly relative with dementia is as normal as looking after a small child, then we can begin to make sensible provision, and we may find that we are creating a gentler society in the process.