Mum refusing food & drink in hospital, what happens next?

[Mini712]

My DM has been in hospital for a week for dehydration & breathlessness. She had been refusing food & drink at home which why she ended up in hospital. She agreed to go into hospital as my DD & GP told her it would be for one day!
She went on a drip for a day & the cardiac team tweaked her meds & prescribed a high doses of vitamin D for the breathlessness but so far we have seen no improvement and if anything she is getting worse. She is now saying she is unable to stand without support & is pretty much declining most food and more worryingly fluids. The nurses think it’s behaviour & are getting frustrated with her because they think she is not cooperating deliberately. Dad & I have desperately been trying to encourage her to eat & drink but she makes up excuses or just says no. The general medical team are trying to find out what’s wrong but all her bloods are fine & her CT scan that she had in July is clear.
What will the hospital do if she continues to not eat or drink? She doesn’t have a diagnosis for dementia but clearly something is not right!

Can you try some sweets like jelly babies which might stimulate appetite? It does sound to me as though she’s making her wishes very clear. Are you seeing her soon? Sometimes it’s easier when you can actually see for yourself the situation. Sorry as I know it’s hard

Sometimes not eating and drinking at the end of life is the only agency the elderly have left. I’m sorry you’re going this OP.

My gran avoided food and drink for many months before she passed away. For ages we encouraged her to have little pots of jelly , and fluid rich foods like soup and fruits. In hindsight we pushed too hard for too long. I think it was her way of letting go and moving on. She didn’t eat for weeks before she died. And her last fluids were around 6 days before she passed away.

as PP said, urine infection can cause lots of unusual behaviours in older people, including refusing food/drinks. As can dementia.

re the nurses in the hospital. If I were you I would have a stern word with them. When my gran was in hospital for a while we had to really advocate for her and make sure the nurses knew we were present and engaged in her care. I challenged some really snippet comments from overworked and tired hospital staff who thought my gran was being ‘difficult’ on purpose. I do have massive respect for medical staff and know how hard they work, just to be clear.

Im sorry to hear your mom is so unwell and am sending love.

Would she talk to a hospital chaplain? They care for all faiths and none. Just as a way to open a conversation with her about what she's thinking.

It might help to try and work out whether it’s:

Knows that eating and drinking are important to getting better / staying healthy, and wants to but struggling to actually do it for some reason, or

Knows that theory, but totally not interested in that any more.

Or dental / oral issues that make it painful.

The former would point towards finding ways to get what she needs into her. Drips. Fortified drinks. Very calorie dense food. Favourites.

The middle is a mental health and / or end of life care discussion.

The latter is relatively straight forward.

It’s unlikely to be feasible for you to work out which if you’re not there. So it’s a conversation to have with a family member who is.

Being in a place she wants to be is likely to help regardless. So if that’s home, can look for ways to use that as a lever and motivator. You want to go home, dad wants you home, you cant go home with a drip. Can you find a way to drink three cups of tea a day so you can go home. Or wine. Or sherry. Or orange juice. Or whatever you like.

(late additional thought - continence or mobility issues that mean is avoiding intake to prevent issues there).

How's her heart? Breathlessness could indicate congestive heart failure (which doesn't mean she's dying btw)

It sounds like she's declining cognitively (dementia?). Have they done a brain scan?

Unfortunately no one can force feed her. I'd try to prepare your Dad for her possible decline

I'd take her home, once the docs can't find anything obviously wrong, get carers in and allow her to live as she chooses

79 isn't old nowadays. But some 79 year olds ARE old, IYSWIM

Definitely ask for her to have mirtazapine as PP said. Wonderful for creating an appetite

@Itsallovernow23 I’m so sorry for your loss. Glad to hear that your Dad died peacefully at home and thank you for the advice. It must have been so stressful.
I’ve been thinking Mum probably needs palliative care involved but I seem to be the only one in the family that thinks this. Because she doesn’t have a diagnosis of any illness, aside from the heart failure (which apparently isn’t that bad) no one has mentioned EOL.

A small dry sherry before meals?
Sorry.....I keep thinking of things which worked with my parents

I'm sorry to hear this. Although a different situation, my MIL was admitted to hospital for one condition (stroke), but after 6 weeks, it was discovered she had another one, which sadly was too advanced for treatment (uterine cancer).

A lot of assumptions were made about her low appetite, namely that it was just because of constipation/behavioural. She'd lost a lot of weight in the 6 months before she passed.

I guess a long-winded way of asking if other possibilities have been considered re appetite

No one mentioned EOL to us either. I dont think doctors do and it was only the consultant who said to move from curative care who even triggered palliative team. And then they said he had 5 months even though he was unable to eat.
When people get to the EOL they dont have desire to eat and it went against all my instincts and I had to try really hard to not pressure my dad to eat.
You dont need doctors or other family to call or find the palliative team in the hospital. It can just be for you to get advice, seriously they were amazing for me and dad. They sorted out SALT, got him continuing health care funding, overrode the ward doctors about his discharge, even got the transport to come sooner. But before that, they popped in every morning and spoke to my dad like he was an autonomous human. Sadly, I hadnt been doing that as he was unwell for a few months and I was nagging him to eat, exercise, take meds etc. I was focused on keeping him alive.
At home they still visited him and took only his wished into consideration. I would call them see what they say x

Yes was just coming back to say that palliative care is about the last 12 months of life, not just last hours. In fact for dementia, gold standard is good palliative care from the point of diagnosis. It’s about a mindset not a timescale.

@Itsallovernow23 & @PermanentTemporary that is so helpful to know❤️. I’m going to the hospital on Saturday & planning to stay with Dad for a few days so hopefully on Monday I can speak to someone from palliative care.

What a wonderful way to treat people at this defining time. I’m really impressed with this service

Have they assessed her capacity ie: does she fully understand the risks of not eating and drinking?

@Florencesndzebedee I don’t think they have.
Just found out she has now been put in isolation, suspected Covid🙄

Oh no @Mini712 that's a real blow 🙁

Could be that she has just had enough. My grandmother in law was fine, but in he early 80s she decided she was bored of living, and the next flu she got killed her, and she was obviously ready to go.

Sorry you are in this position OP. Having been in your shoes, I think if I was there again I’d question what being in hospital was achieving - my relative had many many hospital stays that with hindsight were pretty pointless, in fact they came home weaker than they went in every time.
Id try and speak to whoever’s in charge (assuming she’d rather be at home) and get some extra care arranged at hime. My relative hated hospital with a passion…

Sorry if this has already been tried but these were recommended a while ago: https://www.jellydrops.com/?utm_source=google&utm_medium=cpc&utm_campaign=11707355703&utm_content=109008883090&utm_term=dementia%20sweets&gad_source=1&gad_campaignid=11707355703&gclid=EAIaIQobChMIn7eV7YXOkAMVJZqDBx1EsA6FEAAYASAAEgJq9_D_BwE

https://www.jellydrops.com/#gad_source_1
These are great for people who won't drink. Being dehydrated often causes confusion which then makes it difficult to reason with them.

I also wonder if you pause the requests to eat and drink - or just do it less often? She might be getting fed up of it and think everyone’s nagging!

would she agree to have the drinks if she was allowed to ho home with a nurse visit every couple of days?

That’s so weird we posted at the same time!!! Hive mind! 😂❤️

My grandmother we think gave up or atleast made her own choice. She went into hospital after a fall. She hated having to have help at home . We as a family would take turns every day also to cook/clean and help her.
But she stopped eating/drinking. They moved her into her own room after several days . And she quickly deteriorated.
But they also didnt put her on any drips or interventions. We didnt insist as a bit clueless .
Turned out she was on the Liverpool care pathway. Which has since been banned . But I suspect variations of it still exist .
I think the hospital considered it the best plan but did not communicate to us as a family at all .
I hope thinks improve for you.

I don't have any very useful advice OP but I just wanted to say I'm having similar issues with my DM except she's not in hospital (though she has had two admissions in the last month ). In fact we just got back from a short trip away together. She won't eat more than the occasional mouthful, whatever is offered, and she doesn't drink much either. She has a lot of diagnoses now but no one has mentioned palliative care and it's hard to know whether this is something she wants. I don't feel I can instigate it on her behalf as she's got very cross at me interfering in much less intrusive ways.

It's easy to imagine it'd be obvious whether someone is refusing because they've given up but with my DM it isn't really.

She talks positively about eating well and getting stronger, doing more things independently and having more fluids and carbs, but then refuses anything in front of her, even if she's asked for it and we have gone to shops especially for it. She complains about most food being not right. She's starting to say water is difficult too and gets very grumpy about being nagged. She's not particularly confused though occasionally she is. Part of me feels it would be easier if she was. She's not just lying there being wan either - she's quite forceful in many ways.

It is frustrating and confusing but I feel I can't really do any more than I have and so I don't nag and just follow her lead. But then I don't really think she wants to die, and certainly not in this way - from malnutrition - which is frankly pretty grim, so it's quite hard to stand by as her actions don't match her words.

Sorry - probably not much help but I empathised with your post. I don't think the nurses in your case sound very experienced? I found the ones we dealt with generally very good, and pragmatic, but I felt they left a lot unsaid.