This is what I find, it's all the unknowns, you don't know what's going to happen, it doesn't progress in the same way with each patient.
(Betty asks us) 'Do you believe in euthanasia?'
It's worse than cancer, people get better from cancer- but nobody gets better from dementia. I have a friend whose mother was 104 when she died, she didn't know anyone at the end. She'd had dementia for 20 years. She admitted 'why can't they just give her a pill'...
You get to meet nice people here (the Buddy Cafe) you get to see what your likely to face later on, so it gives you insight. The carers meeting, the one we go to once a month is great because patients can't go in! It's surprising how much you learn what your coming to, and you think oh my God.
With cancer you can identify it as terminal or they've got 20 years to go, but they can't do that with Lewy Body Dementia as it can't get better. It's worse than cancer. Whether I would have the courage to let him have the tablet or let the hospital... its all the unknowns. It's emotional that you they will never get better, but its how far you will go with it. Whether I could give them a tablet? because then you've got to live with it.
You don't know how long its going to last and how its going to progress, and the more it progresses, the more you're a prisoner with them. When Ray goes out I'm worried sick till he comes back.
Sometimes you love them to bits, somedays you could kill them. Its just lovely to speak to people and for them not to say 'well he's ill' I know he's ill, but it's not tattooed on his head, and when he's showing me up in the supermarket, they don't know he's ill.
I'm lucky because Ray likes coming to these groups. Until I came to these meetings I felt very lonely and depressed- until I found I wasn't the only one. (and your very easy to talk to) Not the only one, I found out that there are a lot more people putting up with a lot more than I am.
It develops in all sorts of ways, you then start with incontinence and whether they've changed their underwear... it like going back to having a baby. (I'm not thinking of getting rid of him!)