Mum not eating anything in hospital

[mumsgothelp]

Following earlier thread,
She has not eaten for a couple of weeks while in hospital following her collapse at home. She has dipped dramatically with her dementia since entering hospital . I can get her to sip water a little but she does not appear able to chew and her swallowing is very difficult. I find it difficult to accept its her choice not to eat which is what the ward sister is telling me. She can just manage a spoon of icecream and at most has two - three teaspoons spoonfuls of this during day at most. Her weight is falling off and she looks very gaunt to say the least. Is anyone else experiencing similar and I wonder why staff are saying she is eating a little when clearly witnessed by all my family she is not. I am finding it distressing to say the least .

 

[Amy in the US]

Hello, mumsgothelp, and if nobody has said it already, welcome to TP.

I am very sorry to hear about your mum. This must be incredibly stressful and upsetting for you.

Many here on TP have reported that hospital stays can be very difficult and disorienting for the person with dementia.

My first thought is to ask for an assessment from the SALT team, to make sure there isn't a physical problem with eating, especially as you say she seems to be having problems chewing. In fact, I wouldn't ask, I would demand it happen now (but then I'm not very patient about that sort of thing).

It doesn't sound like you are getting good information or support from the hospital. I am thinking perhaps you need an advocate of some sort. I'm not sure what it's called or how to access it in the UK, but an ombudsman or patient care advocate or social worker or geriatric social worker of some sort, might be helpful for you. I am sure someone here will know, or you might contact Age UK and see what they can tell you.

Best wishes to you.

 

[fizzie]

They should have done a SALT assessment - Amy is right - they need to find out why she isn't swallowing particularly as you feel that this is not a choice but even if it was there is usually help at meal times. You might like to tell them that you expect her to be supported at mealtimes and that effectively by not helping her to eat they are withdrawing food and drink which is not acceptable.

I would speak to either the matron or the consultant - the Matron is more useful from a practical point of view and set out your expectations. If you don't feel you are getting anywhere then go tthe PALS office and tell them you need some help.

 

[Amy in the US]

Fizzie, thank you for the clarification for the OP. If I ever manage to learn a bit more about your system I will feel better about dishing out advice. (Although, it's a year since my mother's diagnosis and it's not like I know much more about how things work here in the States!)

Apologies for the tangent.

 

[mumsgothelp]

Mum not eating anything in hospital.

Many thanks for all your kind words and support. It's hard listening to others with similar stories too so my heart goes out to all who share here.
I am in contact now this week with Dorset advocacy due to our experiences with mum. I don't wish to sound negative as its bad enough for mum and she does get lovely help from some nurses but I feel we are being palmed off about mums underlying problems - I feel it's got something to do with her discharge and where she goes and which budget etc. Drs and sister are not acknowledging to us what we see that's for sure and hospital social worker not really stepping up as she does not respond to my call and has not provided any contact details either. Pals at hospital have been very supportive though . I am going in every day to try to help mum with feeding and I hope to get some help with advocacy soon to help us through this maize. Good luck to all on same journey, regards J

 

[fizzie]

Well done, sounds as though you have achieved a huge amount and it is so difficult to do that when you are so worried. It does sound as though it might be a budgetry issue - so difficult to get to the bottom of that, I'm not even sure the professionals know what they are doing when they are fighting over budgets. They need to have their heads knocked together.

Good luck and do keep us updated please x

 

[PollyP.]

Welcome to the forum,

I'm so sorry that you are going through this traumatic time with your Mum, it's really heartbreaking and frustrating too.

My Mum has been in hospital twice in the past couple of years and both times were just awful. The nurses try but they really don't seem to understand dementia.

When I went in to see Mum, her meal had been left just out of reach on a small table, the bread roll wasn't even sliced open and they expected her to butter it herself. I had to help another patient (dementia too) with the cling film that was wrapped around her dinner, and then I even had to assist her to get to the toilet and back again.

I'm glad that you have got the PALS team on your side. None of us like to make a fuss but sometimes you just have to do it.

I do hope that your Mum will start to pick up a little, especially if you are able to go in for mealtimes (not easy though!)

Thinking of you and knowing just how you are feeling too.

((HUGS)) Pauline

 

[middlemiss]

Hi, have you asked the staff for an assessment for fortified drinks? You can get them in either milk or juice in our hospital and you can also ask if she can see the dietitian. My mum has a very restricted diet - fussy eater - and I took in menu suggestions (mum eats mainly softer foods like jackets, cheese, rice pudding) that are in her file.
I have an understanding of what you are going through as my mum has been in hospital for two weeks and an assessment unit for the last 4 weeks. We find mum eats better when we are there, and also if we eat our own sandwiches with her.
Big hugs x

 

[copsham]

There can be light at the end of the tunnel!

My mother was exactly as you describe your mother when she was in hospital for 8 weeks - three years ago. She would be coaxed (forced!) to eat a sandwich, nasty dry white bread. She would eventually take one bite from a quarter of a sandwich, then not swallow it. This would be recorded as eating a quarter of a sandwich. She lost weight and looked so emaciated. I wandered if it was deperession.

She was discharged to be cared for at home and then after 5 weeks went in to a nursing home. On discharge from hospital her false teeth were totally stuck in her mouth caused by not taking them out and cleaning them. I had been vigilant about most things but missed the teeth issues. Her mouth was a mess. This could have been why she was not eating.

Her lovely nursing home got her walking again, got her partially continent again and best of all got her eating again. Just with patience and tender loving care. It is hard to believe this happened, her dementia though as bad as ever. She sleeps most of the day and night but gets up for her three meals a day and eats in the dining room! In the past few weeks she has started to eat less and maybe the issue will return but at least I can problem solve with the nursing home staff and not feel so wretched as the time when she was starving herself in hospital three years ago.

I hope your situation sorts itself out. It is so distressing to go through this .

 

[mumsgothelp]

Thank you so much for sharing your experience. It's very sad to hear but makes me feel that it's not so unusual how staff in hospital do not understand dementia patients special requirements and therefore our loved ones do not thrive as well as we hope while hospitalised. Mum continues to get worse and is virtually in sleep state today so we are monitoring and supporting as best we can, Thanks again for you time in responding it's very much appreciated here. Regards J

My mother was exactly as you describe your mother when she was in hospital for 8 weeks - three years ago. She would be coaxed (forced!) to eat a sandwich, nasty dry white bread. She would eventually take one bite from a quarter of a sandwich, then not swallow it. This would be recorded as eating a quarter of a sandwich. She lost weight and looked so emaciated. I wandered if it was deperession.

She was discharged to be cared for at home and then after 5 weeks went in to a nursing home. On discharge from hospital her false teeth were totally stuck in her mouth caused by not taking them out and cleaning them. I had been vigilant about most things but missed the teeth issues. Her mouth was a mess. This could have been why she was not eating.

Her lovely nursing home got her walking again, got her partially continent again and best of all got her eating again. Just with patience and tender loving care. It is hard to believe this happened, her dementia though as bad as ever. She sleeps most of the day and night but gets up for her three meals a day and eats in the dining room! In the past few weeks she has started to eat less and maybe the issue will return but at least I can problem solve with the nursing home staff and not feel so wretched as the time when she was starving herself in hospital three years ago.

I hope your situation sorts itself out. It is so distressing to go through this .

 

[fizzie]

I am so sorry that your Mum is so unwell today - have you managed to ask for any assessment or spoken the consultant? Did you get a decent response?
Thinking of you and your Mum x

 

[fizzie]

Have you asked that they moisten her lips and mouth and keep her comfortable - they should be regularly making sure that happens and hydrating her