After Ken Livingstone managed to stop talking about Hitler – yet again – the other night, he moved on to make a light-hearted remark about dementia. I can’t remember the exact words he used but it was along the lines of “If I said that, I’d need to be tested for dementia!” I have seen numerous people who have dementia in recent times and believe me there is nothing to laugh about.
Some weeks ago I took a man on a social outing to one of his favourite places. We both really enjoyed it, had a good laugh and I told him we’d do it all again when I saw him next. But when I saw him next, he didn’t remember having gone to his favourite place and he didn’t remember me either. If I had not gotten used to this awful disease, I think I might have cried.
I didn’t realise quite how commonplace their dreadful disease is. Some say around a million people in our country have dementia, but it is increasingly clear that the real figure may be considerably more than that.
I had heard it said that people with dementia are happy in their own little world and as long as they receive loving care everything is fine. If only. It appears that some people are happy in their own world but it’s a strange kind of happy. Sometimes the laughter is there, but more often it’s the blank look of nothingness. And even that laughter comes for reasons unknown. They don’t usually know they are laughing, or why. I am not sure it is any kind of happiness at all.
Think of a million people with dementia and then add the number of people affected by it. Husbands and wives, sons and daughters, grandchildren, brothers and sisters, care staff, doctors and nurses are caught up in it too. What’s that – three, four, maybe five million people whose lives are directly affected. We need a cure more than anything else.
I am not getting immune to these awful diseases. I don’t know how much they are affecting me in a cumulative sense, but my job means I must try and make their lives better, or at worst less unbearable. It is not about me, I know that. Only a person with a heart of stone could not be moved, though.
So when friends tell me about the family members they have lost to dementia, I know better how to feel their pain. When they have also lost their inheritance to pay for care, I feel ashamed of the system that punishes those who do the right thing all their lives, only to get shafted when they system should be helping them. Agony followed by despair followed by anger followed by nothingness.
Imagine your lover, your best friend, overwhelmed by this ghastly disease, not knowing where they are, not knowing where they are, not knowing anything about their own lives. As I say, I have seen many people laugh whilst losing their minds to dementia. They laugh, but there is nothing funny about it.
