Advanced dementia and forgetting how to eat

It’s hard. You have to slow down to their rhythm and we aren’t used to this if we are fixers and do-ers in other aspects of life.

i had a very close friend die of cancer a couple years ago, and the best thing we could give her at the end was time. Holding her hand and talking quietly about the past, about the future she wouldn’t see. She didn’t want flowers or blankets or back rubs or anything that could be bought or sorted or fixed or done for her: she just wanted human contact with someone willing to sit still with her towards the end.

I wouldn’t worry about having him weighed so that you can keep your siblings informed of his decline. They will be aware he’s declining anyway and are free to visit and see for themselves at any time.

I too read the thread where someone had put “they’re not dying because they’re not eating, they’re dying and stopping eating is a very natural part of the process”. I found this a really helpful way of looking at what was going on.

I think particularly as women we can feel a pressure to nurture and this can include providing healthy and nutritious food that our loved ones will enjoy.

Watching someone you love slowly die and having to accept that spending large amounts of time getting fluids and calories into them isn’t necessarily in their best interests can take a bit of adjusting to

I'm sorry you're going through this. FIL went through this stage and I know I'll probably end up seeing it again with DM who now has dementia, so I know how hard it is.
I would reiterate what a pp said though, about them not eating because they are dying rather than the other way around. In my DF's last few weeks he just stopped wanting to eat. He did not have any form of cognitive decline or dementia or an illness that particularly impacted his ability to eat, he just went from someone who took real pleasure in eating to not having any interest or desire in eating. I know it's not quite the same as with dementia, but I think (unless HCP say there is some other issue) it can be helpful to see it as part of a natural process and not a battle (that you will inevitably lose) to try to get them to take in the nutrients and calories they would usually need.

This is why my mum brought my gran out of a care home, 2 years ago she was only down to eating yogurt and soup...she is now and not long after leaving that care home eating full meals three times a day plus snacks...all it takes is persuasion and sitting eating with her....in Feb this year she had a fall broke a hip, was in hospital and again within days nurses saying we can't get her to eat...they would put her full tray in front of her then collect it half an hour later still full, so we made a schedule to be there at meal times and again she started eating properly. It's like having a child and encouraging or even feeding them because they forget

@harriethoyleI’ve also just re-read your OP. My DF doesn’t have dementia, but I also often said it’s like he’s forgotten how to eat, so it may not be linked to his dementia at all.
My advice would be to not let yourself get too obsessed by it. Try to enjoy the time you spend with him without thinking about food and drink. Sending hugs.

My husband stopped eating any more than teaspoonsful of solid foods, largely due to fear of increasing swallowing difficulty (as far as I can gather). But he accepted my suggestion that milk would settle his upset stomach problem, and is now drinking a couple of pints a day, to which I can add powdered vitamin supplements. It’s not a perfect solution, but it keeps him going.

Thanks @harriethoyle, you too x

I’m sorry you’re going through this OP, and so many others on here too, but this thread is so helpful to me right now.
My DF is 8 days into end of life care after about 3 months of struggling to eat. We were almost force feeding him and obsessed with getting him to eat, and I wish I’d known about the ‘not dying because he’s not eating, but not eating because he’s dying’ as it would have reduced some stress from the last few weeks.
Even last night I was kept awake with worrying how the not drinking anything for the last 3 days was affecting him and should they be giving him something. Not to prolong his life, but to keep him comfortable. This thread will stop me questioning everything and accept the process that is taking place.
But it’s torture to watch and I’m sorry others are going through and have been through this too.

Dementia had the opposite effect on my stepmother in the early stages. After lifelong restrictive eating, the dementia made her forget she wanted to be slim and she gave her appetite full rein, to the point of taking food from other's plates, and using her bare hands to scoop eg mashed potato if it was served communally.

She's now very heavy and consequently hard to lift, but as her illness progresses she's unable to self feed and gets less and less pleasure from food. I'm sure it will continue in this direction now, and I'm sure my dad will face your dilemma about feeding fairly soon. I'm so sorry, it's just a horrible, horrible disease.

I’m also surprised by other poster saying doctors had recommended feeding tubes as I thought this was not advised at all in the case of dementia patients and could actually make things worse
My mother died in 2010 if that makes a difference. The Consultant wasn't pushing the idea it was a one-off suggestion. He also said they could do a CT scan but I said I didn't think there as much point as there wasn't anything that could be done and it would have distressed her more and my Dad and sister agreed. He was a lovely man and I think he wanted to assure us he was doing all he could, When she was in hospital he actually sat with her and tried to feed her himself and some time later phoned me at home to ask how she was, ironically that was on the day of her funeral.

Asking for food to be tapered would be heartbreaking, but perhaps your Dad will do that himself, or his body will do that for him, so you won't need to ask for any plan or intervention. If there's a desire for food he will open his mouth, if not he won't. There's dignity in that.
I agree that your Dad would forgive any mistake or misjudgement you may make, because nobody could be acting with more love and care, and he will know that.

I’m so sorry OP, it really is one of the most cruel conditions. In terms of your Dad forgetting, it can sometimes help if you have your meal with them - he can watch you and, to an extent, copy. It’s not a long term solution and he may already have progressed beyond this but I always used to encourage families to eat and drink with their relatives. I wouldn’t worry about his weight loss, ask the nurses to keep you updated on “loss” by eye rather than weighing. SaLT and dietician assessments are good ideas and pressure area care is essential. You don’t have to make the decision of him not being offered - you can always offer x thinking of you

So sorry to hear all your stories, but they are so helpful.
My father has been diagnosed with Alzheimer’s.
Very early days, but not eating and drinking enough were one of the early signs.
I feel we will see this continue to worsen and while we’re nowhere near the stage of thinking about this yet, my sister and I have both agreed that we wouldn’t want to artificially get calories into him outside of normal foodstuffs.
I’d rather he slipped away earlier through malnutrition, than was kept going with drips and shakes with no quality of life to show for it……

My mum with dementia gradually ate and drank less and less, probably for the last 6 months of her life. The care home were amazing and put all sorts of plans in place and arranged swallow tests, enhanced nutrition and encouraged eating/drinking all the time she was awake.
At the time I thought it helped but I’d advocate for different decisions now and let nature take its course earlier. It is an awful disease.
(I’m also surprised by other poster saying doctors had recommended feeding tubes as I thought this was not advised at all in the case of dementia patients and could actually make things worse - I read a lot of studies at the time).
So sorry about your dad x

My nan doesnt really eat. Shes still drinking. She gets most of her calories from liquids. She recently broke her hip. She was walking and fell. I think she was walking so much that her legs went from under her. We were told that people with her injury normally die within the year. Honestly, and I dont meant to be callous, it would be better for her. I love my nan but she is a shell of her former self. Really, she died a decade ago. She isnt living and shes scared all the time.

My mother was admitted to a care home after not eating for, i think, 5 weeks. She was expected to die but one of the carers managed to get her to eat. After a few months she stopped again and they kept sending her to hospital to be put on a drip. She would revive and go back and eat again for a while. This happened several times. Eventually the consultant offered tube feeding but, as a family, we said 'no more'. She eventually died and, to be honest, I think it would have been kinder to let her go sooner. Having experienced this it is what I would want for myself.

One more thing. It's hard to say this, but better to say it than not I think. Regarding his weight loss, please brace yourself as it may become quite shocking. I did personal care for my dad so saw his body, and by the time he passed it was quite shocking - it reminded me most of the tragic photos you see of the newly liberated Holocaust camp survivors. Frankly it shocked me that someone could be so underweight and still alive.

What helped me was holding on to the fact that the one merciful thing about dementia is that the patient doesn't seem to suffer from physical hardship in the way a mentally well person would. (And the valium and morphine obviously helped with that).

But God, nobody could say it's easy.

I've just reread the thread, and I do think it's important to remember that we are all posting from our own experience either as family members or other types of care giver, but we don't actually know your dad and it's important that you get advice from the HCPs who do oversee his care - it sounds like end-of-life to me but obviously speak to them and see what they advise.b

I do think it's best to put the emphasis on his comfort and dignity now - so weighing him, the prolonged meal times etc may well not be the right way to go.

My personal advice would be to spend every moment you reasonably can with your dad, doing things he enjoys (my dad liked watching the horse racing, or just sitting together -until the very last few days he could still talk, and we had some great conversations I will always treasure. He also really enjoyed receiving gifts and we gave him loads of random tat for Xmas - mugs with "best grandad" on from my daughter etc - that he was utterly thrilled by!)

If you can take time off work to spend more time with him, do so. I did and will never regret it.

Will the care home allow over night guests? I will never regret the nights I spent caring for my dad in his last few months, even the nights I spent freezing my arse off on the floor of A and E! Because I know that waking up and seeing me there next to him bought us both so much comfort.

As for your family - urge them to spend time with him too, but remember, you aren't responsible for their choices. My half brother had to sit through dad's funeral knowing that he hadn't seen my dad for the last 9 years of his life. (They weren't NC or anything - half brother just couldn't cope with dad's dementia). That's his cross to bear, I refuse to carry any part of it.

And again, look after yourself, too. And don't be hard on yourself. You will make mistakes and you will have some regrets, but you clearly love him and are standing by him in his hour of greatest need. And that's something to be hugely proud of.

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.

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

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.