Advanced dementia and forgetting how to eat

[harriethoyle]

My DF has had dementia for around 9 years now and been in a care home for 6. He always had a very good appetite but in the last week it has fallen off a cliff and he’s only eaten three meals. I’ve made up a snack box of high calorie tempting snacks and staff are trying little and often.

The district nurse has been out and says basically he’s beginning to forget how to eat. I know that’s a natural progression of his dementia but I’m finding it so hard. It feels like waiting for an axe to fall.

For those who’ve been through this a) did you find any strategies for getting nutrients into the patient and b) how long was it between this stage and their death?

As you say this, sadly is part of the natural process . The most important thing now is to ensure that he doesn't choke, which would be distressing for all concerned
He needs things like yoghurt and thickened liquids rather than his favourite foods to tempt him that's not the problem.

I would ask for an assessment from a Speech and Language Therapist. He may need to move towards a softer diet as finding it difficult to chew. He may also need support with eating as forgetting how to do it. Many people need one to one support with food to prompt as well as assist.Many people with dementia supplement their diet with fortisip drinks( or similar) which can be prescribed, basically a nutrient dense drink with about 300 calories per drink. Different phases in eating can go on for years .
i can imagine how difficult this is for you. He is also adjusting to a new environment .

Hi OP. My DM died in Feb, after going into a nursing home at the end of Dec. My mum dropped to half a yoghurt and possibly a biscuit per day and then also stopped drinking shortly after that. She died within 7 days of not drinking more than the odd sip.

A lovely person on here told me something that a doctor had said to them, which was that the person was not dying because they'd stopped eating, they were not eating because they were dying. This helped. xxx

Yes @Pearlstillsinging I’ve asked he is offered yoghurt, custard, ice cream and porridge every day and as an alternative to meals. Meals are already blended @tougholdbirdy but a SALT assessment is a good idea, thank you. DF is on the high cal shakes too.

The problem is not prompting - it’s that he’s just stopped opening his mouth. So it’s nigh on impossible to get any nutrients into him 😭 This disease really is the gift that keeps on giving…

Thank you @NotAgeingGracefullyThanks for sharing that. It is helpful.

It might sound like an odd thing to say but a couple of my elderly rescue dogs just went off their food in their last few weeks and that’s what this feels like. It’s like he’s winding down.

I have a close relative with dementia. Luckily her husband is her carer. They are at the stage that every mouthful has to be explained how to swallow. In a home they just don't have the resources to do that. It's part of the process and we were told this is what most dementia patients die from- they just don't know how to eat and drink.

Actually his care home are being brilliant and taking over an hour per meal with him and also being very proactive with snacks @Askandyforcompo so we’re very lucky there.

Why would you want to find way to feed him lots at this point?

I mean, what will
happen if he does gradually stop eating?

I'm saying this as gently as I can.

If his condition has progressed to the point where he can no longer do something as fundamental to life as eating, it may be time to stop thinking about food as a source of nutrition and calories, and more a source of comfort only. Small amounts of things he might like the taste of. No coaxing or pushing or trying to get calories into him. You offer, he chooses whether to eat or not. This is only going one way, unfortunately. Has the home talked to you about adapting his care plan for comfort only, as he moves into a different stage of this illness?

I'm so sorry OP, it's very hard. MIL hung on for a couple of weeks with just tiny sips of fortified gloop, then just water. Nothing at all by the end, just mouth care.

Late DH didn't have dementia and this still happened. He gradually stopped eating then drinking then died five days to a week later. Why would you want to prolong their lives at this stage?

We used a sippy cup and protein or high calorie drinks that's the only way we got my mother any calories but it meant she slowly rather than quickly starved to death. In the last few days she also forgot how to breathe and I begged them to let her have enough morphine to end it. Unfortunately the increasing emphasis on longevity over quality of life means the end is often grim and takes far too long. Alzheimer's kills I stupidly thought it was a disease of the mind of some sort of forgetfulness but my mother forgot how to eat how to drink how to breathe and her death certificate actually says Alzheimer's a few weeks before her death I stopped them giving her anymore antibiotics or oxygen as that was just prolonging it now I wish I'd stop forcing her to eat. When I look back I know now I was doing it for me not her and I wish I could have found a more compassionate way negative stuff and I'm so sorry but I wish someone had given me more information a few months ago.

I just find it intolerable. But I know that’s my issue, not his nor necessarily in his best interests. I’ve already decided against any kind of tube feeding and we have a DNR in place. But it’s almost unbearable to watch.

Thank you @Mixymaxymoxy i really appreciate your sensitivity x

We moved to having an "enhanced" ice cream cone several times a day. We mixed commercial ice cream with Complan and butter (or sometimes heavy cream). She couldn't remember that she'd already had one earlier and felt it was a "treat".

This is a really useful way to look at it - thank you. I also have an elderly parent and we may be faced with this issue.
My friend’s father was bedbound with dementia and when he stopped eating/swallowing properly the doctors wanted him to have a feeding tube. Her response was “to what end?” and they opted not to.
He died shortly after but she was surprised at the push to prolong life at all costs.

We stopped all extra treatment for mother in law as she had problems with food going into her lungs I think that then prompted a heart attack. We said no more treatment apart from pain relief and she passed very peacefully in around a week with no medication at all and no food. She had been in constant distress for 2.5 years and there was little point in continuing to try and keep her alive so we activated RESPECT.

So sorry to hear this OP, it's a hideous disease.
You remember your old dogs lacking appetite and this sounds like the same thing. He doesn't want to eat and perhaps this is nature's way of his body closing down and preparing for the end. If it was my loved one I would let it happen and just sit with him as much as possible, watching out for any signs that he does want something. But we're all different and perhaps this doesn't feel right for you.
Bless him.

Yes I think you’re right @comeoncolleen - he’s just beginning to wind down. Dad had porridge this morning and a supplement drink last night - but it seems that he’s now not eating much more than he is. 5 meals in the last 9 days, out of a possible 36.

I think my short term plan is this: monitor each day’s intake via his food and fluid charts. He was weighed last week and I’m going to ask for that to be repeated in a fortnight to see what effect this is having. He will be offered meals and snacks but it’s actually impossible to force feed him because he won’t open his mouth.

I don’t think, in the longer term, I’m going to ask for additional calories in the form of custards, supplement drinks etc but right now I’m just going to let Dad lead the process. I’m being cowardly I know but I can’t bear to ask for food to be tapered off yet. I know that’s for me not him but I think he’d forgive me for that. I also know there are difficult decisions ahead and I will take them when I have to. Just need a bit of time to gird my loins really.

Thank you to those of you who’ve shared your experiences of this. It’s a woeful club to be part of! But I’m grateful for the solidarity.

@harriethoyle I would consider what benefit it is to know that he's lost weight? He will lose weight - that's inevitable. If you aren't going to respond to the weight loss by changing your course of action, it's useless information which will just torture you.

Comfort is the way forward. There is a known disease with a known progression that is following a typical path that can't be reversed. So the focus is better placed on 'is the food available food he would ordinarily like?' and 'is it being offered appropriately'? If the answer both of those is yes, that's the best you can do.

We have a huge emotional attachment to food but at these stages the hunger cues diminish and there isn't the same gnawing pain that we experience when we haven't eaten. The brain knows the food isn't needed.

I'm so sorry you're facing this. I'm glad, though, that the home is a good one.

How does being weighed help your dad?

You don’t need a plan. He’s on a well-trodden path and tbh he needs to be in charge now. The home will be used to this: what they need to know is that you don’t expect miracles from them, and that you want him to be comfortable.

So you offer, and you give comfort, and you go alongside him as best and as bravely as you can.

Well @Lougle I guess my thinking was a) to see how quickly this progresses so I can try and prepare myself a bit b) so that if it’s very rapid I can tell my useless and disinterested brothers that the end is likely nigh c) so that I can revisit whether in fact Dad is offered food or we just move to care based on comfort rather than life sustaining. I’m dreading that but I owe it to him not to shy away from it.

Cross post @Mixymaxymoxy 😊

It's so very, very, very hard. Make sure you look after yourself, remember to eat and sleep yourself, etc! Do you have any real life suppot?

My dad decreased the amount he ate over the last few years of his 10 year journey with dementia, and in the last month or so barely wanted to eat anything - he would have occasional tiny cheese sandwiches, milk in his tea, and still sometimes liked puddings, like custards or ice cream. That was it.

Have you completed a RESPECT form? If not, I urge you and his other close loved ones to speak to the care home about this ASAP, so that you can plan an end-of-life journey for your dad that reflects what his wishes would have been when well (if you see what I mean).

Pretty much straight after Xmas this year, my dad (who was suffering from repeated chest infections at this time also - he would be hospitalised, given anti-biotics, but as soon as he finished the course the infection would return) stopped eating and drinking, and we made the decision with his GP to withdraw all but palliative care, knowing this would lead to his death within weeks at most. It was his time.

My mom, brother and I cared for him at home, with carers coming in twice daily and the district nursing team available to administer morphine and Valium (bascially we had to call them if he was distressed, and they would arrive within the next two hours - it's not an ideal set up, but there you go).

This stage of his end of life lasted 10 days. I had not realised someone could last so long without drinking, but apparently as the body shuts down it also requires less.

My brother in particular struggled with not giving him liquid, but the nurses told us that at that point liquid but would have gone onto his lungs and cause him pain.

It was the right decision to allow him to pass at this time, and was what he would have wanted. In some ways I really treasure those days we had together as a family and getting to say goodbye to dad - I spent a huge amount of time next to him on the bed as my presence seemed to comfort him - on the other hand, watching someone you love so much slowly die like that is traumatising (not a word I use lightly) and I think we all still have the mental scars.

Everyone's end of life is different, as it should be - but you have any questions at all please feel free to ask, and I will answer as fully as I can.

Please don't ask for him to be weighed - what is the benefit of that. Very bluntly he is not eating because he is dying. He is not dying because he is not eating. At end of life the body knows what to do. It takes more energy to consume and digest food, the body does not need food.

Yes it's hard to watch, and I would keep offering small amounts of favourite foods. My mum had icecream a couple of days before she died and I think enjoyed it.

Hugs to youx

I'm so sorry OP. We're going through this at the moment. DM has severe dementia and is in a nursing home on palliative care. She's totally bedbound, doubly incontinent and can do nothing for herself at all.

In the last year she has lost 6st and now weighs 7.5st. She is still eating and drinking in small amounts but in the last couple of weeks she hasn't been opening her mouth wide enough for either us or her carers to either get a spoon in without repeated prompting and demonstrating what she needs to do. She's also forgotten how to bite, so where we could previously give her biscuits or a small slice of cake and she would bite down, we now have to break them up into bite sized pieces and try to get them into her mouth.

It's utterly heart breaking. I have no real advice but just wanted to let you know that you aren't on your own in dealing with this awful situation.