Anyone got experience of not eating?

[familydilema]

Mum 90 - never a big eater. In a care home and has dementia. My Sister gets a call from a staff member saying she's not eating and want to get her into hospital. We say mum would not want that. Go in today and she's eaten some breakfast but care home still really worried. Anyone got experience of parent with dementia and food. I feel like she might be checking out. Care home want to get palliative care involved..

I'm a SALT who used to work in palliative care.

In general I would say that eating less is part of the normal progression of dementia. It's not 'fixable'. I'm sure you're right that it's not on her best interests to go to hospital.

If you felt it was right, the home could ask for a GP review, but be there yourself if you possibly can to prevent hospital admission for the saje of it (most GPS wouldn't but you find the odd one that will even though it's obviously pointless).

If you possibly can, try to be there at a breakfast to give her a mouthful or two and see if she appears to want anything. Try very sweet stuff, maybe ice cream or whipped cream with honey. If she's not keen, why try and battle? Just offer her nice tastes every few hours.

I’m so sorry. It’s really hard.
My Mum was the same. Stopped eating and became very agitated if anyone tried to feed her. It was the beginning of the end. Gradually everything stopped working. It was kidney failure and dementia on the death cert.

Thank you for sharing your experiences .. unfortunately the GP is very unreliable and we have previously encountered his panics about getting her to A&E. Mum hates sweet stuff and impossible for me to be there at breakfast.
I feel a difficult time ahead

Well in the end none of us can do more than give our viewpoint. I think don't be afraid to get on the phone to the nursing staff and give your viewpoint - maybe dont ask for a GP review!

I think just ask yourself what you genuinely feel is in her best interests, and tell them that.

I'm sorry your mum is going through this. As PP have said, this is part of dementia.

Is your mum on build up drinks/shakes/soups? What does she like to eat normally? Sadly the hospital can't do much if your mum isn't interested in eating. Palliative care can be a good thing, their expertises are within symptom management which could be helpful to your mum.

My mum is in a similar situation. She has been refusing medication,food and fluids. She's in a community hospital and last week they were very concerned. Mum said she didn't know why she was refusing but she didn't want to be alive anymore. This week she is taking some protein shakes and was eating a bag of crisps when I visited! I think the care home will be concerned that she falls ill on their watch and that's why they are flagging it up. I have told the community hospital staff that mum has more or less given up and I do not want her moved. It won't do her any good.

Thanks for replies -She is on a build up drink but hates it as it's very sweet. She also has constipation which I read is quite common. She has lost weight in the last month and is 7st now with a BMI of 17. She always liked the care home food beforehand and they have said they are open to making other things for her.

My lovely dad who had always really enjoyed his food just stopped eating too. It's very sad and very difficult to see. I think people with dementia just lose interest and as a pp said all you can do is encourage sips of fluids and a mouthful here and there. Dad enjoyed chocolate for a long time but even lost interest in that in the end. I'm sorry to hear you are going through this, it's just so hard and there is no answer.

Unfortunately not eating mostly the body not wanting food. It's a 'normal' progression.
At 90 who requires 24 hour car with dementia shows how frail your mother is.
She may be entering the end of her life.
I agree that hospital isn't the best place for her. I would ask about palliative care and keeping her comfortable and tastes of food as she wants.

Take care OP xxxxx

My MIL was the same, when at home we had the GP out who said she had a urine infection and prescribed antibiotics, but MIL would not take them as they had to be taken with food. She was better when we visited and would eat a little, but everything I took round she refused. GP cancelled next visit, so we rang for an ambulance. Straight away they took her and first 2 days she did eat a bit more, but then went back to refusing food so they put a drip in. By chance we were visiting when the doctor was doing his rounds, his views were that there was nothing medically they could do, the mental heath team visited her. She was 87 and up till this time very independent, still doing voluntary work with Age Uk. She died after being in hospital for 10 days and on her death certificate they said main cause was anorexia.

Sadly it's often part of the end stage progression of dementia (we saw this with DM). In some ways I think food intake is the only thing some patients feel they can control, appetite taste and swallow may go, and they refuse food and drink and slowly fade away. It's very hard to let them go, but what do you feel is in her best interest?

Personally I think it's just the normal process of the body starting to shut down.
At that age, they're hardly going to be working up an appetite, are they. 🫤

Also, with dementia to consider - as PP have mentioned, their eating tapers off unfortunately.

I'd carry on trying to tempt her but obviously not force her.

I'm so sorry to say it but I work in this field and while I have seen end of life things very rarely ( I work in a different bit) I have seen enough to learn that things start tailing off, and this might be a sign. But you know that. Life doesn't go on forever and we will all go through it at one stage. Spend the time, say the things and take it one day at a time x Her weight is down, her bowels are not working well any more, nothing out / nothing in might be what her body is saying to her. I'm sorry xx

Thank you everyone.. she's had a very full and independent life and up until 2 years ago when she broke her hip had never been on any medication. It's hard to see her so frail and I know she is declining.. thank you for your kind words and sharing your experiences. It's her birthday next week so family will come and make a fuss. She does still enjoy visitors

I do dementia reviews and this is very common. There is very little you can do to encourage them to it, it’s part of the illness. I agree with the home that it’s likely time to look at end of life/palliative care teams. Just keep her comfy and going into hospital is the last thing she needs.

Does she have a respect form completed?

I have experience with it from a carer's POV but not family. I'm not sure it's checking out, as such, I don't think the residents had the capacity to consciously make that decision but it is the beginning of the end, ime. I am sorry you are facing this.

From my experience, you are right to refuse hospital treatment, and your mother's carers probably think so too but they are legally obligated to report when hospital care might be needed. It doesn't mean they think that is the best option.

I would start looking at palliative care. Depending on the home and their staffing levels, this might be given at the home or it might mean moving to a hospice. If the care home suggests hospice care, please listen. I'm sure you would but we did have a few families who (understandably) did not want to think about hospice care because it meant the end was near. Some homes are not suitable for end-of-life care and though the carers do their best without the right number of staff they can never offer the quality of care people deserve if their needs outstrip the level of staff available.

If it is any comfort the last days are calm and comfortable. If the palliative care does take place at the home please remember the carers are there for you too. Don't be afraid to lean on them if you need to and take up any offer of extra help they give, even if it's just a cuppa and a chat. They are not offering out of a sense of duty. They are offering because they love your mum and want to help however they can.

Absolutely agree with this message.

Your mother is coming to the end of her life. Palliative care is the kindest thing to start.

The doctor and the care home are in disagreement about palliative care. He wants to wait two weeks until next visit. We have told care home we would like something in place sooner and they agree. Unfortunately no family was there when he came today.