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?

Sorry OP, that’s really hard. Difficult to say whether it’s disease progression - probably based on my experience, but lack of nutrition and hydration can make it much worse for sure. Approach we took (multiple times, different relatives) was to take and give them whatever they will eat, wherever they will eat it. Not at all ideal as it depends on you, and others, being able to go and sit with her and having the right rapport with your mum to encourage her to eat. All the ‘five a day’ goes out of the window and it becomes about fat and calories to keep her as comfortable as possible. Gently though, this could also be her starting to die and her body’s way of moving towards that. Not that this is imminent, but it could be part of the last year of life when reduced appetite and frailty are often seen. Hopefully someone with palliative care experience can give you a view.

Gently - I think that the kindest thing would be to stop trying to make her eat. This is likely to be part of her deterioration.
Is it fair to force her to keep on being alive if she does not have a good quality of life?

Talk to her GP and perhaps agree a treatment escalation plan.
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Sorry posted too soon. I’m sorry that you are having to watch her deteriorate

Thanks @fruitfly3. I don't see that her body has much in the way of fat stores to dip into - the skin is hanging on her arms now. But I also don't like the idea of the staff spoon-feeding her, and especially not tube-feeding though I don't think that happens with advanced dementia anyway. I think like you it is just the body signalling that it wants to close down.

That is good advice about the treatment escalation plan, thank you. The last place I want her to be is very ill and distressed in the back of an ambulance, or in some hellhole of an A&E. I take it the idea is if she becomes seriously ill they will just make her comfortable in the nursing home? Most of the other people on her floor have a DNACPR order (I can see them on the board) but she doesn't.

My mum did this, too. She had vascular dementia - very fast compared to Alzheimer's - and was only in a nursing home for two months. Prior to that, she had little appetite but would eat well when given food. She picked up in all ways for her first few weeks in the home, but then started slowing down very noticeably. She received excellent care, with staff presenting frequent small tidbits and a variety of drinks, organising her medication, but they very gently warned us that she was signing off.

I feel she had a very good death, actually. She moved, day by day, further into a twilight world of waking sleep, dreams and imagination. She was physically comfortable ... she just gradually wore out and slipped away.

Trust the care team, @AInightingale, and do what you can to let her feel love. Sending you a quiet hand-hold.

So sorry, it’s really tough and you clearly want the absolute best for her. It’s worth starting to understand the end of life landscape for her. Again, it doesn’t mean she is there but it is so so much better to be prepared. Ask the GP covering the home or if you have a local hospice, check what they can provide and whether they cover the community (sometimes it’s hospital and sometimes it’s hospice). Your mum should have an anticipatory care plan (stopping emergency dashes into ED that you collectively deem not to be in her best interest) as a minimum. Again, in my experience you have to be the one to ask for this and push to make sure her care is as coordinated and in her interest as possible. You’re doing a brilliant but painful job OP, look after yourself.

It sounds like she's at the end stage of the disease now @AInightingale

Leave her be. Keep her comfortable and make sure you talk to the staff about end of life medication. The GP will need to prescribe this.

It's unkind to keep forcing very ill, very elderly people to eat, when there is no hope of recovery. Some care home staff do have trouble not offering food to their patients, but really, they should be guided by your mum.

Make sure the staff also know not to send her to hospital for any reason. Also, not to attempt CPR (though surely they would not).

I don't think they like doing CPR on the very elderly as it risks causing broken ribs, though if she took a fall she'd be sent to hospital, presumably. The nursing home is where I'd prefer her to spend the end of her life, the state of the NHS terrifies me.

I'm also sending you a hand hold OP. You really need to talk to your mum and the care home about her signing the "purple form". Gently, you dont want her suffering resus procedures (I'm not a nurse). For food, take whatever she will eat or drink - lucozade, chocolate milk, rice pudding, soft fruit pieces. Sending love, it's not an easy time.

You can ask for her not to be sent, even if she falls.
She'd hate being in A and E and if she had a fracture she wouldn't survive an anaesthetic.

I think one of problems with encouraging her to eat is that she could potentially end up choking and this in turn can lead to pneumonia.

It’s very hard watching someone you love die of dementia but one of the kindest things you can do is to sort out escalation of care.

It really is like losing them twice but your DM doesn’t sound content and it does sound as though the disease is progressing.

Maybe call the Admiral Nurses and talk this through before you talk to the Care Home. They might give you some points to consider

Yes - her teeth aren't great either (though she's an unenthusiastic about soft pulpy food and soup). She has dental plates and they keep going missing! The care home we're happy with, on the whole, but jeez they misplace a lot of things. Choking and aspiration pneumonia would be a real possibility.

You really do need to do some advanced care planning with the GP. pneumonia used to be called all the old man’s friend. It’s very likely that she will develop an infection or become physically unwell in the future and you need to plan in place so the home and medical staff know what level of treatment you wanr for her.

OP I came to this board tonight looking for similar advice. It suddenly occurred to me that the refusal to eat isn’t entirely dementia related, but the body starting to shut down. My DGF (also 92) is still living at home and I am wondering who I need to discuss this next phase with. Such compassionate advice here so thanks to pps. DGF was always so aware of the need to keep his energy up with food, even if he didn’t really want it, it has been upsetting to see that go out the window. It’s hit me it is unlikely there’s any coming back from this.

Talk to her GP. See if you can get palliative care involved. In my case the GP refused to refer to them but did agree an end of life plan with me that meant antibiotics and a morphine driver stocked for in the nursing home and she would only go to hospital if she was in pain that could not be managed there such as a fracture.

Dementia affects all bodily functions including digestion, not just cognition and speech, they're just the most visible and upsetting effects. Even when people with dementia eat relatively well it can be harder for them to take in calories and nourishment from their food.

Seems that way @deltapanda. It is very hard to witness someone lose all pleasure in life, even food. It's like a switch has been flicked but maybe yes, just the body signalling that it's had enough.

I’ve had the exact same conversation today with my grandad about my Nan who is 89 and diagnosed with dementia a year ago. He’s worried about her eating, but when I broke it down to him, what she’s having for her size and weight wasn’t actually that bad.

She sleeps until 11 so has no breakfast. Then has a cup of tea with a biscuit, approx 60 calories. Lunch he will serve her a meal which although she picks at it, she manages half so maybe 600 calories. She then has those high calorie drink at 1000 calories. Then through the afternoon/evening she has at least one kitkat, one timeout and if she’s feeling sprightly she will even have a glass of wine. So intake wise, although it’s not looking a lot, she’s packing the calories away and not moving enogh to burn them.

I know she’s in a home so it’s difficult for you to record, but could they possibly do a food diary to put your mind at ease? Whilst I do think it’s a sign of their decline, it might not mean it’s imminent if the calorie intake is actually ok?

My mum is also about 5stone but only 74. Why hasn’t she she got a dnrcpr? My mum also has an ehcp (elderly health care plan) which states she only goes into hospital if absolutely necessary. Even after falls (of which there are many) she is monitored in the home until paramedics arrive but never taken in yet-which is what I want. I have poa for health-just a thought.

A dnacpr order has never been mentioned to us. I am a bit baffled by why so many of the other old people there seem to have them. Unless the subject was raised with my brother, who has always been inclined to downplay her condition a bit. Like it's somehow callous to 'plan ahead' and have such a thing, but I really don't want the nightmare of hospitals again, our local one is 20 miles away.

This is said with the greatest respect, but any attempt to resuscitate your mum would be futile and few ambulance crews would even start resuscitation in her case. It is definitely time for a proper discussion with her GP about DNACPR or even better a ReSPECT form which covers a wider range of situations and emergencies.

If she's been hospitalised before and is over 70 with dementia I would be astonished if there isn't a DNACPR. Definitely a conversation I would have. And I think it is very unlikely that anyone would jump on the chest of a 90 year old lady with dementia whatever her family thinks tbh, OP. The outlook for her generally would be so poor if she got to the point where she needed CPR.

@AInightingaleMy mum is very similar - in her 90s with dementia and in a nursing home. Very thin - 2 years ago she was six stone. Every call with a nurse or carer involves them telling me how well she eats and it seems to be a bellwether of how they feel she is doing.

But if she were to stop eating, become unable to feed herself, refuse to be fed I wouldn’t want them to try too hard to get her to eat. My preferred ending for her is that she starts to eat less, becomes more tired and sleeps more, then eats and drinks even less etc and then slowly, peacefully slips away.

I am surprised the care home haven’t broached the DNAR with you if everyone else has one. I would get that sorted as a priority. My mum is also only to go to hospital if there is a need for something like x rays after a fall (although I just read someone say I could ask that even that doesn’t happen. I doubt she would survive or be given an operation if a major break but if she just needed a cast on her arm it seems wrong to ask that that isn’t treated) Otherwise it’s keep her comfortable at the nursing home.

re missing stuff, some care home residents are magpies and collect other people’s glasses and stuff that is lying around (rooms are not always locked and some residents are mobile). My mum used to also like putting things somewhere safe but that was often a place that made no sense to me or staff eg hearing aids under the mattress. Before she went into a home I was regularly searching her house for glasses, hearing aids, denture plates. Now she doesn’t wear any of them so that’s one less stress.

Maybe it’s different if you die in a care home but when my dad died at home at 83 with heart failure his carers who called 999 had to carry out CPR - instructed by the 999 operator- while the paramedics were en route. He died in his sleep so was clearly cold and dead but the carers were still instructed to do CPR - I imagine they did a gentle version of it since the situation was hopeless.

My dad had a DNAR prepared but it was still at the GP surgery and it has to physically be at the location where the person is so it was as if there was no DNAR. The carers knew I was due to collect it that morning and put it in the house but dad jumped the gun and passed away before I had collected it. The protocol for them and the 999 operator was no visible DNAR = do CPR.