Upsetting news at care home visit

[winda]

Thank you all for your kind words and helpful advice. It all helps.

Jo, I think you are right in that I need to try to find something to whet my husband's appetite and I will have to try different things. It worries me though when he isn't even interested in chocolate and biscuits. He just doesn't seem to understand what the food is there for. He is the same with drinks.

He is also spending more time sleeping and he is becoming more and more unsteady on his feet. The nurse said that it wouldn't surprise her if he had a fall sometime soon.

I was told that it was all part of his deterioration. I will have to accept this but it's difficult.

 

[winda]

Have you tried milk shakes made with full cream milk and fresh fruit, or thick full fat yoghurts? They are high calorie and might tempt your husband if they are rich and sweet.

Sylvia, he won't eat fruit any more but I could try him with the yoghurts, he may like them.

 

[rajahh]

Winda I am having similar problems, not as severe as yours but it is a worry.

Hopwever one of the posts did say to try not to feel responsible and that is in fact how I cope with it.

I put food in front of him, and eat with him, and he always starts to eat, but quickly leaves it. I just clear it away . I found trying to persuade him just made for unpleasantness.

My husband will eat bananas but only half a one a day, he has gone off cake, gone off fish, gone off beef , pork, even a fried egg he spits out the white.

My husband is losing weight and has gone down 2 sizes in trousers .

Yghurts are a no no as he is fed up with them.

I might try him on puddings .

I will be interested to see if the CH call in SALT and may even consider asking for help myself.

One of the reasons I feel for my husband is that his teeth are not in good condition and his plate became oncomfortable, so he often takes it out. Sadly when he was in respite this must have happened and the [plate has been lost, so now he cannot chew the same.

Is there a possibility your husband has a problem in his mouth, teeth or ulcers etc. ??

Jeannette

 

[FifiMo]

Winda,

Do you know if the home have checked his mouth? If he is not eating or drinking enough then he can very easily get oral thrush which is exceedingly painful. This can then be the reason for not eating so forms a cycle. The food of the Gods that we found for times of dire need was a McDonalds thick shake. Has over 1000 cals in it! Can be drank through a straw or spooned like ice cream. The SALT also advised us when our mum wasn't eating to use a teaspoon and to place it on the bottom lip. There is some kind of reflex action by doing this that causes the mouth to open. When she was holding food in her mouth the SALT said to gently stroke her throat and this will encourage the swallowing reflex.

Fiona

 

[lin1]

Hello Winda Sorry to hear about your Hubby not wanting to eat or drink, I know how worrying it is
I used to have a devil of a job to get mum to drink

I was thinking the same as Fiona
also toothache, sore throat

Maybe hubbies taste has changed from sweet to savory
or Is having problems chewing , so needs a softer diet

My Admiral nurse explained that many people with dementia eventually
need much smaller meals but very often through the day

My mum was on some real nice meal replacements she adored them , called Resource Dessert energy. their packed with over 600 calories , vitamins, minerals all in a tiny pot of thickish flavoured very sweet custard

I too dont want to worry you but thought I'd mention it as you said Hubby has a slight cough

my mum developed a very slight cough and I do mean slight,it was more like mum was trying to clear her throat and also happened while eating
after a week I called the Dr in he diagnosed
Pneumonia
apart from the slight cough the pneumonia was silent(no outward symptoms)
I am thinking if Hubby is not feeling well, I am not saying hubby has Pneumonia but maybe a chest infection then it may well be affecting his appetite and making hubby sleep more

So I would ask them to have hubby checked over by gp if gp finds nothing then call in a dentist as well as SALT

That way Winda you know you have covered all bases

Sending you XXX and (((HUGS)))

 

[lin1]

The SALT also advised us when our mum wasn't eating to use a teaspoon and to place it on the bottom lip. There is some kind of reflex action by doing this that causes the mouth to open.

This worked with mum
I found that once mum had had a little taste and realised it was something nice(her nesquik milkshake) she would have a little drink

I had to do this with her food ,treats sometimes when mum was ill

I think its a reflex from babyhood, I remember seeing mum and an Aunt do this when gary a cousin was being weaned, Thats how I knew about it

 

[olgab]

During my visit with my husband today, the duty nurse and the CPN wanted to have a word with me.
They are concerned that my husband is not eating despite much coaxing. If they try to feed it to him, he gets angry. I had noticed that when I take him snacks he needs much persuasion to eat them whereas he would have eaten them with relish before.
The CPN thinks that it is due to his general deterioration and apart from suggesting lots of small snacks of high calorie food, said that there was nothing more anyone can do.
He has put on a considerable amount of weight over the last couple of years and eating has not been an issue up to now. He has plenty of reserve for the time being. But obviously this will not last.
It was upsetting and depressing news.

I was so very sorry to read your post. I understand exactly what you are going through.
My Brian was admitted to the local EMI hospital on Saturday. He has become more and more reluctant to eat or drink each day, sometimes refusing to take anything, other times spitting it out. According to the doctor he's not aware of where he is and he hasn't recognised me for over a week. Yesterday he wouldn't take anything and he was diagnosed with a chest infection, they've prescribed antibiotics but of course its difficult to get them into him. Finally after about an hour of trying last night the nurse mixed the crushed up tablet with jam and he finally swallowed some of it, they also tried him with jelly and he eventually took a little which at least gave him some liquid. They might have to transfer him to the General Hospital tomorrow for intravenous antibiotics and liquids if there's no improvement, I'm dreading that happening because the privacy and care in the EMI unit is fantastic.
I'm sorry to go on about my problems but it might help you and I do hope your husband doesn't have a chest infection.
Take care of yourself and my thought are with you. xx

I have read on here of others having problems getting their loved ones to eat and so I am aware it is a common problem but how awful to know that the deterioration has reached this stage.

The good news is that I did manage to get him to eat some chocolate and a couple of biscuits whilst I was there but it was after two and a half hours of persuasion and some anger from him. And this was food he loves ( or did).

 

[winda]

Hi rajahh and Olgab, you know exactly how I feel - I'm sorry. Part of me wants to think it is a phase but realistically I think it is unlikely. I can accept that this will happen eventually but my husband's deterioration seems to have been so rapid.
Like you rajahh I find that trying to encourage my husband causes unpleasantness, so do the staff. The only way to deal with him is to back off and then try again in a few minutes and hope he has forgotten (he usually has but he can still be difficult).

I am thinking of you and what you're going through.

 

[winda]

Hi FifiMo, it is a good idea to check his mouth, something I hadn't thought of. I know what Thrush looks like as my mum had it so I could check myself (if he'll let me). It could also be that he has toothache although I doubt it as he has always had really good teeth and I think that he would be able to indicate by touching his mouth if he were in pain. But of course I can't be sure so maybe it would be a good idea to have the dentist to see him.
Thank you for pointing this out.

Thank you also for your suggestion of giving him McDonald's milk shakes. I will give it a go.

 

[winda]

Hi Lin, I know what you mean about Pneumonia and how it springs up almost without warning as it happened with my mum. But I think that as this has been going on for a few weeks it is unlikely to be Pneumonia.
As a result of my mum's Pneumonia and her needing a Tracheotomy, we had help from SALT and so I am familiar with the kinds of things they suggest. It could be that my husband is aspirating when he eats and drinks and if that is the case he would need his food to be pureed and his drinks thickened. I would also have to stop taking in biscuits. The staff are keeping a look out to see if this is what is happening.

Thank you for your concern.

 

[Paulineanne]

The same thing happened with my mother. She eats very little and is only 5st. When we visited the hospital regarding another matter the consultant advised soft high caloried fooods. she said even a mouthful is better than nothing at all and I needed to prepare myself for this progression is inevitable.
It is very very difficult - my mother sits looking at the food and I am not sure if she knows to eat it. I coax her and sometimes feed her.
I like the idea of the resource desert energy annd I am going to try that today.
Although it is a problem I am thankful for your post as I now am reasurred that mum is not the only person refusing foods.
Please share the name of any foods that work or recipes as this would be so helpful.
thank you. Sorry to go on about my own situation. Good luck with this.

 

[winda]

Hi Pauline,

What you say about your mother just sitting looking at her food is exactly how my husband is and I do wonder that he just doesn't understand what to do with it. He seems to understand very little of what is said to him. When I ask him if he would like to go for a walk he usually agrees but then it can take a long time to get him to understand that he needs to stand up. He will look as though he is about to stand but will then sit back again looking very pleased with himself. I then have to remind him that we are going for a walk and he needs to stand up. He will look at me with a blank expression on his face. Eventually after much repetition of this he will usually stand.

I remember that I couldn't give my mum any foods containing wheat, as it caused her to cough. She was ok with porridge and eggs. Otherwise she would have most of the food we were having as long as it was pureed but I always had to use lots of gravy, sauces etc to do this. She was also given 'Build Up' drinks but she didn't like them as they were very sweet. My mum never liked yoghurt but she would eat rice pudding and bananas and custard. I always used whole milk.

On the whole she was reasonably compliant as she didn't have dementia and understood the need for her to eat to get well. It's different with my husband and possibly your mother.

Good luck, I'm thinking of you.

 

[winda]

Thank you Kassy,

Babies' rusks with milk - how delicious. If only my husband would think so.

Fromage Frais is a good idea and I think he would prefer it to yoghurt. Thank you for reminding me .

 

[Butter]

I need to try to find something to whet my husband's appetite

But please don't feel, if that is not possible, that you have 'failed' him. Of course you need to try, though.

 

[vdg]

My Mum hardly eats but seems to survive on Fortisip prescribed by the doctor.Would you be able to get that for your husband?

 

[winda]

Butter, the way he just sits staring at his food it appears that he has forgotten about eating so when someone tries to encourage him he sees it as an annoyance. He doesn't seem to understand what is happening just as when he is approached for his personal care. He doesn't like being touched and that includes just putting food directly in his mouth or with a spoon.
This behaviour with eating is new in the sense that it has only been happening for a few weeks. He is not easily persuaded to do something he doesn't want to and I don't want it to affect my relationship with him, so I will have to tread carefully.

I feel I must try but it the end I know that you can't force someone to eat and I don't think you should even try to. There is only so much that can be done.
The illness is progressive and I realise that I have to adjust to this and try not to fret too much about it if nothing can persuade him.

It was such a shock yesterday that he has perhaps moved to a different stage as I was just getting used to the fact that he is in the CH and we were developing a routine when I visit. But I can see now that he has lost understanding of much of what is said to him. I am trying to be realistic.

 

[Butter]

he has forgotten about eating so when someone tries to encourage him he sees it as an annoyance.

Maybe that is not an unhappy place for him. But the pain for you is immeasurable, of course. And the shock. Plenty of people here understand this, you know. Keep posting if you can.

 

[jan.s]

Sometimes, I have to model eating for my husband!! He forgets what he has to do, so I share something with him. I take a bite or a spoonful, and then ask him to. He finds finger food easier to cope with, so maybe I will bite a piece and then offer it to him.
Just a thought.

Hope today's visit is OK.

Jan x

 

[winda]

Thank you Butter and Jan for your reassurance and advice.

I will wait to see what I find today. There could be more change as today is the first day of stopping his Risperidone. They will restart it though if his aggression/agitation returns.

Thank you all my TP friends, you are the only people who really understand.

 

[winda]

It turns out that things are not as bad as I thought. Yesterday I was told that my husband isn't eating. Today I am told that he is not too bad with finger food but won't feed himself with a knife and fork or allow anyone to help. He forgets what he is supposed to be doing and even with prompts does not always eat. I have found this to be the case with the snacks I take. Again when I got there today his almost uneaten dinner was still in front of him. He simply wouldn't eat it. They took it away without making a fuss which I am glad of. He seems to be reasonably happy in his own little world. He did though eat some cake they gave him and the chocolate and biscuits I took, so he has eaten something. They tell me that he eats his breakfast but I have sometimes gone in the morning and found his uneaten breakfast in front of him.

They are monitoring his eating so I will have to see how it goes.

He has been taken off Risperidone today but it will be continued if his aggression/ agitation returns. These have both improved greatly of late which the CPN says is due to his deterioration.

Maybe I will sleep tonight...........