Father in late stage dementia refusing to eat and losing weight

[Farmageddon]

Just wondering if anyone is in the same boat, or has gone through this and can give me some advice.
My father is 81 and has advanced Frontotemporal Dementia. I helped care for him with my mother for a long time, but it got too much for us a few months ago, an unfortunately after a very difficult few months (including a stay in hospital) he went into a nursing home 8 weeks ago.

Since then he has lost a lot of weight and is refusing to eat much.I know the transition to nursing home is difficult, but we thought after a while he would settle in and things would be ok, relatively speaking. But every week he is losing weight, and there seems to be nothing they can do.

Initially we thought it was because staff weren't doing enough to make sure he eats, they would leave food in front of him and just take it away again uneaten. He had issues with certain plates and cutlery being used, and we thought it was that. But even when we are in there with him - usually either me, my mother or my sister will visit him almost everyday - we can't get him to eat much anymore.

He will eat 3 or 4 spoonfuls and then just stop. And get annoyed if we keep pushing him to eat. He still drinks, and they have him drinking protein and vitamin drinks as much as possible, but it's not enough. He has lost 7 or 8 kilos since he has been there.

We had a meeting today with the Nurse managers and resident GP, and were basically told he is very advanced and this is just what happens. I'm just struggling with the fact that 2 or 3 months ago he would eat for us and things have changed so quickly. Also, he is quite physically healthy and mobile considering his advanced stage, he can walk around and is quite strong (although these days he's a bit weaker and tired probably because of lack of food), but I just hate the thought that we have to just watch him waste away and are just supposed to accept this.

We were told a while ago when we asked what their plan was to get him to eat, that not being able to swallow was a part of late stage dementia - but he is able to swallow, he is physically ok, it's just he refuses after a few bites and is not getting enough calories. It just seems so strange that he is not bed bound, and yet they keep telling us that this is near the end, even though it could take a few months for him to actually succumb. They said what's most likely is that he would get an infection and not be able to fight it off.

I suppose it's not what I imagined this stage to look like. Sorry not really sure what I'm asking for here.

I carry out the dementia reviews in my surgery. This is very, very common. Lack of hunger and a lack of motivation to eat too.
The transition from home to care home can also worsen their dementia, again totally normal and tends to happen with any move and hospital stays.
It is a horrible disease and I’m sorry you are going through this. Their tastebuds change and they can crave sweet stuff more so maybe try sugary snacks.

There's a supplement called fortisip 2k which is 2000 calories per 200ml bottle. It's like a milkshake and comes in various flavours.

Sorry you’re going through this.. my Nan is in the same place. You’ve probably already tried this but what about biscuits / cakes / sweets crisps - high calorie stuff that’s hard to turn down! There are special sweets you can get for dementia that are v high water content, might be worth trying. It could be the new environment but also the timing could be coincidence. Please don’t feel guilty you or your mum - caring for someone is v v v hard work and almost impossible. Everyone I know who has cared for a loved one near the end has been virtually broken by the sheer effort and heartbreak. It’s not really possible to do well without a full team and he’s in the best place. Xxxx

Hi, thanks - we do try and give him these but the ones he gets are only 400 calories per bottle I think. I've never heard of one with 2000 calories, I will ask about them.

Thanks so much for your kindness. I will have a look for those sweets.

Don't feel guilty, my dad cared for my mum and eventually she had to move into a home
It was very similar, she stopped eating and got a chest infection and went into hospital with it. The antibiotics weren't working and she developed sepsis, and we had a discussion because had already decided no life extending treatment. She died peacefully with me there

Honestly? It was a relief. She did have fairly advanced Alzheimer's but was still aware and I feel she made the choice to stop eating as it was the only thing she could control. She was diagnosed in 2017 and died last year

Not saying all that to scare you but more that it wasn't awful towards the end it was much better that she went from the infection rather than be in bed for months unable to swallow/speak etc

In my mother’s care home (a specialist dementia) I more than once saw residents being badgered and pestered to eat when they clearly didn’t want to - whimpering, closing their mouths and turning their heads away. I know it was done with the best of intentions, but it was distressing to witness and I was determined that I wouldn’t allow it with my DM, if the situation ever arose.

I can well understand that it’s upsetting for you, but people in your father’s situation have virtually no choices left to them. If he doesn’t feel like eating, surely that’s up to him? And as pps have said, it does go with the disease.

Thanks again to everyone who responded.
This week he has been a little bit better, he was calm and in good form yesterday and ate a little for me without getting frustrated. I think after the meeting last week I was just so overwhelmed.
Every step of deterioration seems really hard to accept, and then over time you just learn to deal with it I suppose. We can just do our best with him. After the good day yesterday I feel a bit better, when we he has bad days I feel awful leaving him there.

I'm really sorry you're go In through this. My MiL stopped eating about October of last year, we could tempt her sometimes with a piece of cake or a biscuit. We also bought some complan for her but after a few days she decided we were trying to poison her.
she finally died in January because her flu turned in to pneumonia.

I still miss her but I wasn't upset when she died as her life was so like a living death. Apparently dementia can get so bad it makes the brain forget they need to eat.