I am a woman in my late fifties. By the time I am in my eighties, the number of people with dementia in the UK will have more than doubled. I plan to live till I’m in my nineties, God willing, but by then I’ll almost have a fifty percent chance of having dementia. So I’m planning for having dementia. If I’m wrong that will be a bonus, but if I’m right planning for it will have been a smart move.
So as part of this preparation for the future my daughter knows three things.
she knows that increasing the light level makes a huge difference for people with dementia. It can make more difference than medication or it can help your medication to be more effective. Older people have yellowing of their cornea, and it’s as if they are wearing yellow goggles all the time...if you have dementia and you can’t work things out or remember them, being able to see what’s going on can compensate for this. Energy saving bulbs lose their luminosity quite quickly so you need to renew them regularly. Even if the doctor hasn’t diagnosed me, my daughter can help to keep my symptoms at bay by increasing the light. Even if I never get dementia, I’m less likely to fall over. She knows that exposure to daylight in the early part of each day will make me more likely to sleep at night and not wander, because it fixes your diurnal rhythm. These solutions cost next to nothing, but no one seems to get told.
if I ever have to go to hospital she’ll defy their visiting rules and feed me and make sure I’m drinking and she’ll stimulate me, and make sure I get lots and lots of exercise, even if it’s chair exercise or passive exercise. She might have to take time off work, but even if she loses money that way, she’ll save it on care home fees. Most people with dementia, who have been surviving fine at home, decline rapidly in a general hospital and get fast-tracked to a care home. You hear people say that the old lady went in to hospital because the relatives could not cope. In many cases the relatives can’t cope with what the hospital did to the old lady. It’s totally the other way round.
she’ll make sure that if I’m ever aggressive or alarming she’ll look for reasons in my environment that caused this and not let them sedate me. If the sedation just killed me (a real danger in dementia) it might not be expensive or painful. But it would be a swine if it made me ill and have to go in a home and I ate up all the inheritance in my last months. So she’d make sure she has power of attorney and can control decisions about my care, and make good ones, even though she’s not a professional expert. Because she’ll know what I want, and always wanted. She’ll be the expert on dementia, and on me.