Parent refusing to eat (everything tastes bad apparently) and generally not ^trying^ after a stay in hospital.

[lostinwales]

Hello, my first post in this topic <waves>.

Apologies for the uncaring sounding title, I wasn't sure how to word it. Lovely mum, 77, (?? some form of dementia but not started diagnosis road) had pneumonia which was treated as an inpatient and developed delirium. She was in hospital for a couple of weeks and we think (due to weight loss) she can't have been eating much on the ward.

She is home now, chest clear, no delirium, no reason at all to not be back on her feet but it's as if (and I know this sounds incredibly callous but I can't find the words for it) she just doesn't want to try. She is mostly confined to her bedroom and will only walk across the landing and back with a lot of persuasion and a walker. The hardest part is her refusing to eat and drink. Whatever we make tastes 'disgusting', she makes terrible faces whenever we persuade her to eat. Today I got half a litre of water in to her over the course of the day but it was almost all of my day trying to make it happen, the awful face pulling happens with water too even though she says it doesn't taste of anything. She is barely weeing or pooing.

I am; making tasty calorie dense food in tiny portions and eating with her, trying her with different flavours/textures to see if one suits, trying different drinks/milkshakes/fizzy drinks/super cold drinks, everything gets a face and refusal. Has anyone come across anything like this before? We are at a total loss.

TIA

Have you tried fortisip drinks?

Would she eat chocolate or biscuits? Any calories you can get in to her will be valuable. Maybe a smoothie?

Have you tried sweet stuff? A lot of people with dementia enjoy stuff like crumble and custard, chocolate etc

I think tastes change - my mum drank tea virtually every hour all her life. After she was diagnosed with dementia she just stopped drinking tea, and went on to those flavoured coffee sachets

Pneumonia can take a healthy person 6 to 12 months to recover from. So she's doing well to have come home.

Try anything sweet - your taste buds change dramatically with age. Milky tea/coffee/hot chocolate with a biscuit. Full fat sweet yogurt. Porridge. Doesn't matter what it is as long as it's calorie dense.

Thank you for all your replies, the sweetest thing I have tried so far is a smoothie (got the universal face of disgust) but have some good full fat yogurt with 'fudge' sauce in it to try tomorrow and some chocolate mousse.

@chisum we have tried a couple of brands of fortified drinks but apparently these are even more disgusting than normal food and she has learned to spot when they are hidden in other foods.

@Badger1970 I didn't know that timeline, thank you for posting that puts things in to perspective a lot. I am learning how to hide butter and double cream in every foodstuff available without changing the taste (I am going to be the size of a blimp soon as I always eat something of the same food with her to show it's not actual poison).

Can a spell in hospital supercharge a dementia, it's like she was showing signs before but moving about and eating/drinking perfectly normally and now she's full on 'gone'.

Will break out the proper puddings and custard, my dad will be delighted!

Yes, sadly, time in hospital tends to exacerbate dementia, sorry

Sorry but does seem to be a stage with dementia. Does she have the cognitive understanding to know she will back in hospital if she doesn't eat and drink, if so reinforce that, if not just leave high calorie sweet stuff in front of her, in the hospital I notice they will often automatically put things like chocolate buttons in or whatever they normally like if left open on their table and ice cream for some reason always gets eaten.

If there is any dementia developing any change to her routine/surroundings/lifestyle will discombobulate her out of all proportion.
Things might settle down a bit but may well not go back to what was 'normal' for her.
I know this is really worrying for the rest of the family but try to downplay as much as possible as it is the changes that are scary for your Mum.
Just do your best to get her back to the routine that she might recognise... the difficulty with eating and drinking is part of dementia..
Get an assessment as soon as possible, but meantime there is jnfo on the dementia uk website and forums.

Hospital is the worst place for dementia patients unfortunately. And very common for them not to eat as nobody helps them - food is plonked down, often ‘hidden’ under covers, cutlery wrapped up in plastic or a napkin. They just don’t know what they’re supposed to do! My mum was in rehab after a hip operation and would shuffle over to the bed of another patient with dementia to place the cutlery in her hands and then she would start eating.

Dementia can also significantly impact the senses, including taste and smell. I would get started on the diagnosis route so you can get help and support.

Oral thrush? She’s had multiple antibiotics which will have caused it if she has. Check her tongue.
Additionally if she is living on a subsistence diet she won’t have the energy. It’s very early days yet in her recovery.

if she does have a coated tongue get her to suck on some marmalade until you can get a gp review monday. (Hopefully!) helps to dissolve the thrush.

Thank you so much everybody for your honest and incredibly helpful answers. It reinforces what I was beginning to think myself. We have had initial blood tests and the doctor will hopefully be moving her forward to diagnosis once we have the results. I think my most important job is going to be gently leading my gorgeous dad towards this new reality, he is grabbing at anything at the moment that he thinks shows she is absolutely fine really.

Well that and moving my repertoire on to great puddings and smooth super calorific custard. Will also get in some ice cream for her to try.

@Flossiemoss I will ask her to stick her tongue out at me tomorrow! The marmalade thing is genuinely the most interesting and surprising thing I've learned on MN and I have been here quite some time!

There are special 'jellies' you can buy designed to get water into people with dementia, you can get them online

www.jellydrops.com

Yes, had exactly this with elderly relative recently - no dementia in our case. Basically had to attend hospital for every meal - it would take an hour to get four tiny teaspoons of yoghurt down them. As for drinking water - same - hated it etc. The problem I think in our case was that the pneumonia had so knackered them that every part of their body was exhausted - even their stomach was too exhausted to digest food so it basically told their brain not to eat. So we had to force food down them because that was what they needed for the energy to digest said food.... Eventually things picked up, and now, four weeks after the four teaspoons of yoghurt per day, they are eating full (albeit mashed) meals and getting some strength back. They also got delirium btw.

The trick is to just keep going with trying to get them to eat, but I really feel for you because at one point we thought ours was going to starve to death.

As I know, being over 70, appetite does sometimes decreases with age. I really wish I'd understand this when my Mum was dying. Sometimes, only sometimes, I feel I'm too tired to live.

Look it happens, it's the natural way of things. People die, your Mum may be ready for that. It's understandable that you are not.

I know if my family tried to force more food on me than I could take, I'd rebel.

My advice is to let your mum choose what she wants to eat, how much she wants as well.

Try ice cream. Like everything else, tastebuds become less efficient with age and effectively wear out. Bland foods tend not to appeal because of this. Care homes and hospitals dish up beige tasteless mush and wonder why people don’t eat it. It’s the same with chemo.
Things that can appeal seem quite random. Cold beer. McDonalds cold milkshakes or your own milkshakes made with ice cream. Add extra cream for calories. A decent curry. Pineapple juice made into ice lollies. Sweets. Really salty things - pardon peppers, crispy bacon and sandwiches.
Dont make the mistake of giving old people food. It tastes awful usually. Get food with a bit of bite or really sweet stuff.

Water, though ‘healthy’ is pretty bland. What did she drink before? Try a hot chocolate with marshmallows or a strong coffee. Give her hidden liquids in watermelon or jelly and ice cream.

How is your DMs swallow ? Does she have a wet cough ? Has she had a swallow assessment from SALT? People with dementia and especially after an illness can lose their appetite. It's a natural part of the disease progression. Hospital also increases decline, it's a busy chaotic place so no good for someone who needs a low stim environment.

I would offer her things you know she's likes many people with dementia like sweet foods ! Does she have any favourite unhealthy foods or takeaways ? This now may be a gradual decline in your mum's health but it's a waiting game.

OP I’ve just had pneumonia and as with previous times, everything tastes like metal, unless it’s super sugary. It might clear after a while for your mum.

ftankly I’m taking the opportunity to lose weight but while a body is recovering, it has a lot to do so the hard work of digestion can be a problem.

maybe mention it to the doc in case there’s an imbalance of minerals or electrolytes etc.

Other things to consider are not doing water with meals (as it can fill them up without calories), giving more control by offering finger foods rather than things that need cutlery, encouraging them rather than feeding them. More opine lollies.
Try a sherry before meals and encourage snacking rather than a big main meal. Egg mayo or coronation chicken sandwiches, toasted tea cake or fingers of cheese on toast rather than soup.

Those little pots of jelly are good, sweet and a good way to keep hydrated.

OP delirium can also take a while to fully clear. My grandfather was admitted with pneumonia recently and as a result had pretty severe delirium. The admitting a&e doctor made us aware that NICE guidelines say it can take 6 weeks or more for it to fully clear and that regressions are possible (i.e. they slip in and out of delirium).

Hope you find something that she'll tolerate food and drink wise. when I cared for dementia patients a lot of them had a wicked sweet tooth. Might be worth just indulging that and seeing if it helps get some calories in (as long as she's not diabetic etc!) X

I don’t need this advice yet, but what a font of knowledge and generosity you al are!

My mother has dementia, further down the line than yours but she also has difficulty re motivation to get up and eating.
She is in a lovely care home and gets nutrition supplements and all the help she needs but the GP has also put her on anti depressants which have helped. Apparently depression can be quite common amongst dementia patients.

Again thank you so much for all your helpful messages, I have had my eye on this board for a while, knowing it was my new home on MN now my children are adults but you've gone above and beyond.

@nononononovom They had been tickling at my brain but not quite remembered them, thank you, will get some.

Very helpful to know that pneumonia caused a metallic mouth in someone else. Also very helpful to know that in some cases persevering with every mouthful can lead to a better outcome. Well aware too that she may have had enough and if that is a choice she understands and has her own authority over then I can accept that, to be honest it has felt for a while now that the mum I knew vanished a while ago and left a lovely but different woman in her stead.