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?

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.

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.

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.

Thank you all. I appreciate the support and knowledge, particularly for your very detailed posts @Ilovelurchers . No fear I’ll take on any of my siblings burdens! I’m keeping them informed and they must make their own decisions as the grown ups they apparently are (if anyone could catch the eyes I’ve rolled out of my head I’d be grateful 🤭) There is a RESPECT form in place but a couple of years ago so I think I need to revisit that. Thanks for the prompt.

@FriedSpamAndEggButty it sounds like we’re in almost identical situations. That’s Dad’s current presentation to a tee. It’s awful isn’t it? Love to you and your DM

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 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

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……

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

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 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.

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 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.

I hope you're OK @SchoolNightWine - make sure you have support around you and look after yourself as well as your Dad. Sending you love and strength.

Thanks @harriethoyle, you too x

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.

@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.

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

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.

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

@ExplodingSmittens this really resonates with me: “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”

Since DM died I’ve been the person sorting everything out for Dad. Books when he could still read, audiobooks when that went, a stereo and duplicate copies of his favourite cds, baking at the weekend for him and so on. So I’m finding my current helplessness so difficult to adjust to. There’s nothing I can sort out or fix for him and it’s so hard 😔 I’m definitely struggling to come to terms with this next phase.

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.

It was the same for us when DF was dying of cancer. The best things we could do were to make him comfortable, be with him, talk to him about our lives together and what we knew of his life before becoming a Father and playing his favourite music and poetry.

The feeling of helplessness is hard. All you can do is make him comfortable and visits. My nan doesn't know me. When I visit I dont tell her who I am anymore. I just try to leave her with a feeling of calm and care. In my mind she might forget as soon as I leave but somewhere inside felt that comfort if only for an hour once a month. She cant cope with longer than an hour. She'll tell me shes very busy.

Thank you @harriethoyle. Much love to you and your DF too. ❤ It does sound like we are in very much the same situation. I couldn't quite believe it when I saw your thread pop up and I wondered for a moment whether I'd actually started it myself after too many glasses of wine as that is exactly the thread subject line I would have used....

I spoke to one of the nurses at Mum's home today but apparently none of the carers have reported anything like we've seen when they've been feeding her and she was actually discussed at the dietician MDT today. She's still losing weight, not very much this month, but they've taken her off the nutritional supplements as she just refuses to drink/eat them as she finds them too sweet. I did ask the nurse for someone to actually observe her being fed. The home is usually superb so I am finding it hard to understand why only we have witnessed this change. And I know from the research I've done that the next step is likely to be forgetting how to chew, pocketing food and then losing the ability to swallow.

I've decided that I'm no longer going to take cake or biscuits in for her. Just yoghurt, mousse or those mini trifles and similar. Only very soft foods that she can take from a spoon. I just can't take the risk of her choking when it's me feeding her when we visit. I'd never forgive myself.

My heart goes out to every single one of you dealing with this horrendous situation, whether as a result of dementia or other awful illnesses.

Bless you all - sending loads of care and strength to everyone who has a loved one on this position - be kind to yourselves - keep reminding yourselves there is no right answer, so it's fine to get things wrong sometimes and that doesn't really matter - it's the illness that is at fault, not you!

Reading your experiences is making me realise how very lucky we were to be able to keep dad at home - I absolutely could not have done this without quitting my job and losing my house, if mom hadn't been alive ... It gave us so much time with him and we were so lucky to have that.

And the most important advice I can give is to spend all the time you can with them (but not to the detriment of your own mental health, of course - your loved ones would not want that!). But when you can, just sit with them, be with them, talk with them (or to them, if they are no longer verbal). Hold their hands, read to them, whatever they enjoy.... I spent many happy hours folding up kitchen roll as "handkerchieves" for my dad, as for some strange reason he was obsessed with handkerchieves - absolutely loved them - they seemed to make him so happy. When he finally passed and we cleared out his stuff we found hankies everywhere - my daughter and I actually embroidered his initials onto some proper linen ones and put them with him when we visited him in the chapel of rest....

This is just a silly example - what I am trying to say is, when you let go of the idea of keeping them alive at any cost, it actually gives time and head space to enjoy the time together that still can be enjoyed.

And you may find some golden moments. My dad had an unusual burst of lucidity on the final evening of his last hospital stay (about three weeks before he finally passed, it turned out) and we had the most amazing conversation, when he told me how much he loved and admired my brother and mom, and then told me to "never change". It was beautiful.

Nobody would choose dementia over a quick death, but the one gift it does give is time, to say all the things you wanted to say, and show all the love you can.

It's sparse consolation, but it's not nothing. Xxx