Elderly woman not eating

[AInightingale]

My mother is in a care home (from mid 2024). She is 91 and has Alzheimer's, diagnosed six years ago but was showing signs three years before that. For the past 1.5 years she has had a very poor appetite, needs to be coaxed to eat anything, is on build-up drinks etc (which she is reluctant to take really). The staff have mentioned to me in recent weeks that she's becoming very uncooperative when they try to take her to the dining room. She is very thin, just over five stone, though she is tiny as well. Her confusion has massively increased recently, things like asking me if I live there too or if I'm 'still at school', I'm not sure if this is related to the poor food intake/nutritional deficiencies, or just the next stage of the disease. She has a B12 injection every few months so at least that's being addressed. Has anyone any experience of their parent becoming like this, and if so, what was the approach you took?

I know all about the resident magpies @Choux! Not 'stealing' as such, but the rooms are all unlocked and I've actually been in my mum's room when other old people have just walked in and asked what I'm doing in 'their' room. You'd have to be mad to keep cash or jewellery in a CH. She had a purse with a bit of change in it, no notes, and that disappeared within the first few weeks and I've never replaced it, no point.
Your dad's situation is what I dread 💐. My dad was resuscitated after a catastrophic stroke and lived for a few days after it, he should have been spared that, but there was no DNAR in place as he was quite elderly but otherwise healthy. They have to do it as you say. Really must speak to my brother who is a bit in the clouds about all these things. I sometimes lurk on the Cockroach Cafe thread and 'brothers in denial' seems to be a common theme there!

@AInightingale how's your mum getting on?

TBH I have seen elderly residents in my mother’s care home (all with dementia) being badgered and pestered to eat when they didn’t want to. All with the best of intentions, I know, but to me it was distressing to see them whimpering and repeatedly turning their heads away from the proffered spoon.

To me, if someone of that sort of age, who has dementia, no longer wants to eat, or who eats very little, they should be allowed that choice. I made it very clear to care home staff that I wanted no such well-meant coaxing for my mother, already over 90, with advanced dementia. AFAIK an increasing disinclination for food is often a feature of the later-stage disease anyway.

I went to see her today and she actually ate a biscuit. But generally just seems vague and disengaged, just sitting in her chair shaking her head. The other old people on her floor are much more chatty by comparison so I talked to them. One said she was widowed, I said I was sorry to hear that and she said 'Oh no don't be, I'm not one bit sorry, he was nothing but a torture to me when he was alive'! The inhibitions drop don't they?

My mother was very underweight for the last couple of years in the care home. During that time she was spoon-fed by carers, I fed her a couple of times but I didn't like doing it and they were far more expert than I was. Sometimes my mother would clamp her teeth shut and refuse, and they would try later. In the last year I would barely get a sentence out of her, she would either be asleep or staring into the distance, she was very disengaged. There was always music playing and I would talk to her about it but rarely get a response (she loved music).

She had a DnAR from the first year she was there, the manager asked me about it, I immediately agreed and signed the forms. And for the last two years she also had a RESPECT form, and end of life meds available. She finally caught a cold and quickly died of bronchopneumonia in her bed at the care home, aged 90.

That sounds like my current experience. My mum loved music too, sang and played piano, and now she doesn't engage with it either @catofglory.Very sad to witness, like watching lots of little lights go out slowly.

That is a lovely but sad way of putting it @AInightingale - lots of little lights going out. My mother did at least mostly seem comfortable and peaceful, I hope yours does too.

How are things, @AInightingale? We have reached the stage where my DGF is now refusing his meds in tablet form as well as most food, so I am worried about that.

He’s having periods of delirium which he seems to be conscious of after, am not sure if it is residual UTI or we’re near the end.

I wish he was in a home, as even though he’s getting some kind of medical care most days he never sees the same person twice for them to really understand how quickly he is declining.

The home should have an advanced care plan and the DNACPR in place (these are put in place so that decisions don't have to be made 'in the moment' ) She should also have a 'respect' form which sets out what will happen if she becomes ill etc. Please speak to the care home manager, they don't have to keep taking her to the dining room, providing the care plan is up to date and risk assessments have been done. Sometimes with dementia, they effectively forget how to eat, there are ways of increasing fat content and calorie content.

Sometimes with dementia, they effectively forget how to eat, there are ways of increasing fat content and calorie content

I believe that when someone with dementia gets to the stage of failing to understand the sensation of hunger, and forgetting how to eat, then giving them supplements is unkind.

It's the body's way of signalling that death is starting to approach and we ought to respect that, instead of giving Ensure, and spoon-feeding reluctant patients with enough food to stop them from actually dying.

It's very hard to know isn't it @deltapanda? What age is your DGF? His rejecting the meds may be his way of sending a message that he's done.
My mother doesn't have either of those (DNAR/Respect) afaik @Lightuptheroom though I don't know why it was never discussed with us, I will have to speak to the manager. She seems to have had bloods taken though of course wasn't able to tell me why. Communication from the home is pretty poor.

Sorry to all of you dealing with this, I see it often due to my job and have cared for grandparents with Alzheimer’s and vascular dementia. So hard.

once they start to refuse to eat it is a sign of significant progression unfortunately, with nan I could get her to eat mostly but she wouldn’t for carers or her daughter, I used more “no nonsense” techniques I developed with my horrendous to get to eat dd, came in handy (dd eats properly now as an adult) but the softly kindly approach may work for others. We also gave her whatever foods she would eat eg pink wafers, wagon wheels etc. stuff nutrition.

Do what you can but mostly just treasure this time, alas it can be fairly fast at the end

It's all become a bit like trying to deal with someone who's extremely drunk. That's an odd way of putting it, but it's like trying to get through that barrier. She falls asleep constantly in her chair, put a newspaper in her hands and she sort of points at it, then nods off again - in the world just, but not of it. Don't know whether it's a lack of calories, the dementia advancing very rapidly now, or what.

My DF died last year about the same age as your DM. The care home was very proactive in getting a respect form in place and explained the difference between that and a DNR/CPR form. It made such a difference to the way he was cared for in his final weeks, which still involved lots of blue light trips to hospital but we took the forms with us and it noticeably changed the engagement from the clinical staff in a very good way. It often meant he was just stabilised and sent home, reduced interference with his medications and a different attitude to him in general. Would thoroughly recommend getting this in place.

Honestly it sounds like your mum is on a very downward curve. I would say that expressing your wish that she should only go to hospital after a fall/broken hip should be agreed with your brother the GP and her care home. What about antibiotics if she gets a chest infection? Definitely sort a DNACPR form too, all CPR would achieve is broken ribs I suspect.

Sorry that you are all having this horrible experience of watching the really slow fade. But I do think that her not being interested in food is telling you that the final phase of this journey is coming.

Definitely talk to them about the DNAR, it would be kinder to have one at this stage.

It's really hard, best wishes.

I think it would be best if my sibling and I went to see them together after Easter, as they're even more ridiculously short-staffed during the holidays. He's a bit in denial I think, but she's declined so much over the past year.

When my mum was in this stage she was in hospital. She went several weeks without eating and just had a fluid drip. A very kind doctor said that at this age people don’t die from not eating. They stop eating because they are dying. I think you might need to face this reality and talk to the care home about stopping feeding. I am so sorry for you and your family, it is so hard to know the right way to progress.