When they never wanted to go into a home…

[Frodocheerio]

All his life my DGF has said he never, ever wanted to end up in a home.

Tomorrow, almost out of nowhere I have to choose one quickly for a fast track hospital discharge (rapid decline/ end of life).

It’s the doctors’ decision as he does not have capacity (Alzheimer’s), and I fully agree as for many reasons there is no doubt he would not be safe at home. Still, as NoK and his LPA I feel so guilty and conflicted. Suppose it makes you think about your own agency and choices in old age as well, and how much any of it matters in the end.

Not sure why I started this thread but would appreciate any words of wisdom I suppose.

You poor thing. I really hope he is comfortable there - they sound like they know what they’re doing.

I said to mum that she was going to a convalescent home - for her generation that was a more understandable term - that she needed to be somewhere she could be looked after. It was a white lie I suppose but I’d do it again.

I've seen footage of 'old people's homes' in the 60s and it was fairly horrendous, dormitory style sleeping arrangements, hard chairs, all very institutional. I daresay a lot of the old people were zonked on sedatives as well. So a lot of people will have this as their mental image. Though I daresay it was cheaper to provide - the reason why care homes are so expensive now is that most rooms are ensuite and single occupancy and there are a lot of staff present at all times. When my grandmother was in a state-run home in the 80s/90s, she had to share a room with another woman, that was the norm, and there was no private toilet or bathroom.

There comes a point for many when needs outweigh wants. If we insist on modern medicine prolonging the lives of the elderly and frail behind what is natural, then this is how it increasingly has to be. MIL is in care. She never wanted to go. But is now clean, warm, well fed and safe, not sat in wet pants for hours living off cup a soups and ringing her worn out daughter every hour of the day.
Getting older is grim in many ways. And we need to make peace with the fact that sometimes ‘good enough’ care provided by others outside the home has to do.

I’ve started to think of these wants/demands as a bit like a birth plan. We can all write down or manifest what we want to happen - but reality is often very different. What’s in the best interests of ALL the people involved can mean things have to change and often quickly.
I’ve had/got a number of old people in very different situations and it can be incredibly difficult to arrange things to everyone’s satisfaction.
The very fact that you’re there and advocating is enough. You matter in this situation too.

In a way, it is not about the home anyway. She wants the life she had ten years ago. No one can give that back.

Exactly this. My gran and MIL are at this stage at the moment and it’s so hard.

If he seems upset or agitated at the idea of it, or once he’s there, I’d advocate the ‘love lies’ often recommended on the Alz. Soc. carers’ forum, which was a lifeline for me for far too long. (DM and FiL).
‘It’s just until you’re a bit better/until the doctor thinks you’re better enough to go home.’

If his short term memory is already badly affected, you can probably repeat as necessary. I repeated so many ‘love lies’ to my Dm and she never once remembered that I’d said the same thing before.

I would have 2-3 ways of reconciling this.

1.The cruelty of dementia is that when they lose their memories, they lose relationships, desires, identity and ... without identity you can't know what you want. The person who felt strongly about "no care home" isn't the person he is now.

2.When most people say "no care home" they mean Not to a long stay, not a respite or palliative spell.

3.we don't always know what's best for us. If his needs are best met in a CH, then that's best choice even if he couldn't know it before.

I think 'love lies' can be a difficult area. If the person has capacity to make decisions about their care but is making a decision based on a lie, it's unethical.

I was talking of people with virtually no short term memory, and who are all too likely to become very distressed about all sorts. The point of ‘love lies’ is to keep the person happy - or as happy as they’re ever likely to be - for the moment, when the alternative is distress/fretfulness/anger, or all three.

I do wonder whether people who say you should always tell the truth to people with dementia, have ever had to cope with the likes of my FiL, who suddenly started asking where MiL (dead 10 years) was. At first we explained very gently that she’d died several years ago, but he was terribly upset and cried - only to ask again half an hour later.

So we started saying she’d gone to the shops or to visit Auntie So and So. He’d forget whatever we said within a minute anyway. What was the point of distressing him over and over?

Thank you again for the wise words, it’s funny how these things change on a dime anyway, and what I was worried about last week actually doesn’t even matter now.

The home is excellent and I’m so relieved he’s in such a lovely place, but he has continued to decline so fast that he hasn’t even asked where he is. He’s now on constant morphine and doing little more than reaching out for hallucinations and calling for his mum. It’s the saddest thing I’ve ever seen, and makes my initial dilemma seem like a bit of a first world problem now.