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.

💐

Really sorry that you are going through this, but it sounds to me like a natural stage. People do sometimes reach a point where they just don’t want to eat, it’s part of the process I’m afraid.

I'm so very sorry you and your family are facing this.

There are two things I can say.

Firstly, my Mum lost her appetite in her last few months. She didn't have dementia, and knew full well that "the machine" has to have its fuel to carry on. But neither logic nor emotional blackmail could persuade her to eat. She just would not (could not?) Do so.

Secondly, I'm quite old now, and frail. I struggle with an almost total lack of hunger. At the moment, I eat because I know how distressing it is for family to see a loved one not eating. But I eat high calorie things, that are easy to force down even when I'm not hungry. So, it's ice cream for breakfast, which would have been a dream 20 years ago, avocado and prawns, no low fat stuff, all high fat, high sugar. I'm sure I'm buggering up my cholesterol and stuff, but it's a trade off now, for me.

I sometimes think my Mum was simply listening to her body, which was at its end. She died of multiple organ failure, which I've always translated as "each bit of her was knackered"

Again, I'm sorry you, including your Dad are going through this.

I’m sorry sorry you are going through this.

I had this with a parent in hospital and it was a combination of different crockery/glasses/cutlery plus food/drink that they didn't like or didn't even like the look of enough to try.

Have you tried giving him exactly what he used to have at home in/on exactly the same plates/cups and so on that he had for the same items? Literally taking in home cooked food or whatever he had at home at the same times he had it.

I'm sorry to say that the transition to a home may have just caused so much trauma that they want to just go home & the not drinking/eating is a symptom of the massive psychological disturbance that goes with taking a person out of a familiar environment at that age when they have dementia.

In my experience of people with dementia. there can be several reasons for not eating much.
If there isn't a swallowing issue then sometimes they don't have the same feeling of hunger that we do, also their sense of taste changes (they often prefer sweet desserts for example and often would like to eat nothing else if possible!).
They can lose sense of time so mealtimes don't mean anything, and also can fail to recognise food for what it actually is.

You can get sweet 'build up' desserts such as Forticremes prescribed or from Amazon.
You could ask the home to provide finger food if cutlery is an issue. Eg chips, chicken goujons, cheese sliced up.

It's horrific and you have my empathy. It's a terrible thing to see as a family member. It makes me so angry that not more is invested by governments in finding an effective cure.

Sorry pressed post too soon.
Also he may want to eat at varying times. Eg leave cake slices he can graze on when he is hungry. Is he a sundowner? My Nan was.
If the home is a special dementia home they should be set up for this.

But if he actually doesn't recognise what food is anymore then that's harder.

That's a great post thank - it's so useful to get the viewpoint of someone who has lost their appetite as usually our loved ones can't say how they feel.

In her last couple of years my gran survived 99% on ice cream, mini chocolate eclairs and meringues with whipped cream. She had no appetite but could be tempted with these specific treats.

She was tiny though and in bed most ofbthe time so her calorie need to keep ticking over were minimal.

My mom stopped eating in the last week of her life. She absolutely refused to eat. It's a natural process.

Your dad is still drinking, which means the end is not nigh yet. Mom also refused fluid too in the last week.

It is a natural progression of the illness, sadly. Everything gradually shuts down.

They lose more than just their memory. However, they don't lose their emotions. Your dad refusal to eat is part of his process towards his passing.

He has had enough. I know I'm being blunt. However, having nursed mom right to the end with alzheimers I know only to well what it's like.

Mum spent her last 6 weeks in a nursing home after a nasty fall, which broke her leg. We couldn't care for her at home anymore.

Fortunately, we got her into a place 5 minutes from us. So we could go in every day.

It's a horrible disease and horrendous for you all I know. Nothing prepares you for loss. However, well, you think you are prepared

I also meant to say please don't ever let yourself feel bad about your Dads transition to a home. Several of my older colleagues have had parents with dementia & all 4 of my grandparents had dementia.
All of those relatives with dementia ended up needing to move into a home or to go into hospital (because they passed away from other illnesses). It's normal to get to a stage where you just can't cope as a carer and that's ok.

At my dads home if I visited at mealtimes they would ask me to eat too. He always made more effort to eat when it was like a family meal. My dad hated eating in the Carehome dining room and preferred his own room.
As pp said it could be the plates/ cutlery or the fact the food isn't like the meals he has been used to.
My dad had mixed dementia with Lewy bodies. He did not lose the ability to swallow at all (though it is definitely part of dementia for many people). He always had a hearty appetite and was overweight however he started to eat much less in the year he was diagnosed. At that point he had gone from 17 to 14 stone. When he died two years later he weighed around 8 stone. He preferred small finger food and stopped using cutlery even trying to eat yoghurt with his fingers .

I am really sorry that you are going through this. I lost my mum to dementia two weeks ago. She gradually stopped eating and despite everyone’s best efforts including the carers giving her fortified meals, milkshakes etc, she lost lots of weight. for the last 2 and a half weeks she just refused anything. She would take the occasional sip of water but that was all and didn’t even like the mouth swabs. Unfortunately it is often the way that dementia impacts towards the end. My thoughts are with while you go through this.

I have every sympathy with you @Farmageddon

My DMIL had vascular dementia but was exactly the same as your DF. Eventually so did stop being mobile buts she definitely had a time when she was very mobile but not eating much at all.

Are there certain things that he used to enjoy that are high in calories like maybe ice cream?

Sorry to hear about your recent loss @way2serious.

I am very sorry you are going through this, it's horrible. I have had this happen with two of my grandparents and my father-in-law, and it is distressing to witness. But as awful as it sounds, it is just a natural part of life. If he is drinking that's good, but you can't force him to eat.

My DM's friend recently went into a nursing home with advanced dementia. The food in the nursing home is very nice apparently and much more varied than what her friend was eating before, so my DM thought she'd like it. However, she wouldn't eat a thing until the nurse manager asked my DM what she was eating before she went in. My DM told her the very short list of foods that her friend would eat at home and they offered her those same foods and now she eats. But she will only eat those particular foods - nothing else. So was your DF eating certain foods at home that aren't available now he's in the nursing home? If so, it might be worth offering him those foods and see if it makes a difference.

Is he only feeding himself a few spoons before stopping?
I work with end stage dementia patients. Some we need to feed them a couple of spoonfuls and then they do it themselves, others we have to feed the whole meal to and they are receptive to this. Puddings are always favoured over main meals and that is very common. If in doubt we give pudding, milkshakes with fresh cream in, veg with lots of butter, mash with butter and cream. Full fat yogurts are popular even with people who family say never liked the stuff. Any way to get the calories that will work.

Hi, thanks so much for your messages. I'm sorry to everyone who has gone through something similar, it's so awful. I hate feeling so powerless to help him.

user1471453601 Thank you for explaining your situation. We do mainly just ry him with mashed potato with gravy, and sweet things like yoghurt, ice cream and chocolate mousse. His dentures are another issue (took out his bottom ones and won't let us put them back in) so soft food all the way. He does drink apple juice and other drinks, but only small amounts.

I do think he just doesn't feel hungry anymore, his stomach must have shrunk in the last few months, we were told he is about 50kgs now, when last year he would have been about 65, and even that was skinny for him. He is 5ft 10inches so it's very skinny, and hard to see him like this.
A few weeks ago there was a Covid outbreak at the nursing home, so we couldn't visit for 2 weeks, and when I saw him again I was shocked at how thin he was, I could feel the verterbrae on his spine, and his hands are so skeletal. It's just very distressing.

Thank you everyone, it's comforting to know this isn't unusual. Other people in the nursing home seem to eat better than he does, and he always ate ok for us at home and even when he was in hospital.

way2serious I'm sorry for your loss, I hope you are doing ok.

MrsCarson
He used to be able to feed himself, albeit half of it would end up on the floor. Now he just plays with the spoon and because it's mushy food it falls everywhere. So we help him.

In some ways he still seems to have lucid moments, and like I said he is, or was, quite physically ok so I suppose it's a shock. My picture in my head of 'late stage, advanced' was someone bed bound and unable to speak, which I know is naive I guess.

For people asking what he used to eat, meat and veg, the usual. He had a good appetite until a few years ago. Although he actually never used to like sweet food, but in the last few months has developed a taste for it, so we bring him in chocolate yoghurts and even mini rolls and stuff. But he only ever takes a bite or two.

Thank you to everyone who answered me, it's just been a difficult day to hear that there's not much they can do.

My heart goes out to anyone who has dealt with this, it's horrible.

Hi 👋 Op

It's very distressing, it's horrible

Sorry you are experiencing this too,

I experienced this with my children's father, before he passed last year in June,

I am still struggling with the fact he is dead now in a way

I have extremely mixed feelings about care homes,

Put in this way I see the care home he was in in a negative light mostly...

He was so thin , a several weeks before he died
I couldn't recognise it was him,

It was like , he was just so malnourished like a living skeleton 💀

There was a photo of him on the door when he was first moved into this care home,

He looked so different with a smile on his face and a lot chubbier in weight,

The contrast was so striking

God I miss him,

Even though he was not the easiest of person to be with at times

I agree, I find the nursing home a very depressing place - there seems to be very little in the way of activities or stimulation for the patients, even though I know the staff are nice and trying their best.

I actually hate going to visit him but I know he benefits from getting the one to one attention, and sometimes he seems calmer when we are there. I suppose it's the guilt of putting him there in the first place, we tried for so long to keep him at home but it was too much for us. I'm just dreading the next few months.

I'm so sorry - the fact that he was your children's father must have made it harder. I hope you're doing better now.

I'm sorry. I work in a care home and it is not unusual at all for residents to stop eating. They simply do not feel hungry any more as the body wants less and less. They do not suffer though like we would despite it taking them nearer and nearer to the end.

It's a very natural process but as we are creatures who know how important food is, and how horrible hunger is, we struggle to be okay with our loved ones not wanting to eat anymore.
Complans, fortisips and fortijuices will almost always be prescribed to those losing weight and a fortified diet will be made standard, such as adding cream, cheese or other fatty, high calorie things to their meals but their bodies simply do not want to eat much. That doesn't mean your loved one will be gone soon though. They can live on very little for a very, very long time.