Conversation about frailty with your family
In this time of stories of patients languishing in hospital waiting for social care, and dying there because no bed can be found in the community, I met a woman who succeeded in getting her Dad in to a nice care home at a busy time of year where he will stay until he dies. I asked her how she managed it and she said “conversation”.
Although I’m a professor of dementia studies, I’m always a bit surprised and disconcerted when people say to me, “If I ever get dementia I want them to take me out and shoot me.”
I shouldn’t be surprised because people are afraid of illness and death and research indicates that they are more afraid of dementia than they are of cancer. Dementia is associated with loss of dignity and independence, and we are so tied to those two things that many would prefer suicide.
“Although I’m a professor of dementia studies, I’m always a bit surprised and disconcerted when people say to me, “If I ever get dementia I want them to take me out and shoot me.””
Until the legislation changes in the UK - and it might never change - euthanasia and assisted suicide are not allowed. People who have enough advance warning might be able to find a country where it is legal and get themselves there in time. But there’s a dilemma. If you are well enough to organise all of that, you don’t have much dementia and there’s a lot of good life to live. If you are not well enough, it can’t be done because you are unable to consent to it.
What should we do?
We are where we are, and the assumption is that statistically you won’t get dementia. Even if you live to be ninety, there’s still only 50% likelihood. Also, you’ll probably not ever live in a care home or nursing home. Most people don’t. But if there’s a tiny chance that you’ll end up there, let me show how it goes.
You might be frail and just managing at home with some help. Now and again, you end up in hospital, but you get home with a care package. One day you fall over and have a fracture and end up in hospital again. While you are there, other things that are wrong develop or are discovered, and you end up being channelled to residential care. It might be quite nice, even better than being in hospital or lying alone at home waiting for carers to arrive.
But things can go wrong on that journey. You might be in a hospital bed waiting a long time for a social care package to get you home, and you just get worse while waiting and you never get home for that reason. You might be in hospital, confused and needing a care home bed and you are stuck there for months because you didn’t grant power to a relative to make the decision for you. People die waiting for a care package, even when they have enough money to go somewhere nice.
Have the conversation now!
To avoid this sort of horror, it’s worth having the conversation with your family now about what you would want to have happen in the worst-case scenario. Who’s going to make decisions? How’s it to be paid for? Which place do you detest and if there is a choice, what sort of facilities matter to you? Saying “Just shoot me” doesn’t help those who will have to make a decision, and having the conversation doesn’t make the worst case more likely to happen any sooner.
The successful daughter carer had conversations with her father about where he would want to go if such a day came. They visited likely places and calculated how long he might live there on the money he had, and whether the council might take over the cost if he survived for longer. He made his wishes clear and gave her the legal entitlement to make decisions for him when needed. And it all went smoothly.
There was no guarantee, but at least they had a sporting chance. Joking about being shot doesn’t give anybody that.
