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!

Confused by this
why would mum be seen by palliative care if not on end of life pathway, or diagnosed with anything serious, life limiting etc?

op says only thing is she suspects mum has depression maybe, but has just stopped eating ordrinking

it may be mum is going down route of VSED, but that would surely be in domain of mental health team, if she has no underlying terminal condition

can you explain?

Thank you for the suggestions & input. Mum now in intensive care due to getting Covid😔

Sorry to hear this OP. Sending a handhold

Oh no. She would only be given a place in ICU if they thought she has a chance of pulling through.

just seen update, Covid won’t help appetite obviously, especially if she already has respiratory issues.

can you talk with mum privately , in person ideally, or on video call? Can you ask her bluntly if she acknowledges if she doesn’t drink she will die and is that what she wants? It’s hard to ask, obviously phrase it gently. Not as a “ you do realise” but a “ is this deliberate, is this what you want?”

if it is VSED, in that she just wants to die, then you are going to struggle unless she agrees to some intervention regarding her mental state, and some reassurance her quality of life can improve, how that’ll be achieved. If she’s set on VSED then that’s getting her support, palliative care to manage any discomfort…but without an underlying condition, I’m not sure how nhs supports as she’s essentially going a suicide route.

if it’s not VSED, and she’s genuinely just can’t face food or drink, then the question is why, and it’s all the family pushing to get investigated…something must be going on…she’s not old, old at 79. Not if, other than breathing, she’s seems in reasonable health.

.what I will say is the elderly, especially when not mobile can exist for long time on very few calories. My dad stopped eating ( he was on EOL though ) for 9 months before he died. He’d have Something for a day or 2 here or there when he’d fancy something, but most of time was barely having a mouthful, and 3 days or so of nothing at all. He also didn’t drink much at all…sometimes a quarter of a cup of fluid all day. I was shocked at how long he lived on so little food and drink. So many other posters saying same thing. But, he was on eol, and his body was shutting down anyway. If there’s no terminal condition underlying, it wouldn’t seem normal.

not impressed by nurses getting frustrated…no matter the reason, she needs support not impatience! I’m surprised by that.

I am so sorry to read your latest update. Sending love and wishing you and your family strength as you go through this.

I just wonder if your mum has either quite bad depression underlying which needs to be treated as it would in a younger person (if she hopefully pulls through the Covid) and / or the start of a dementia.
The hospital should have a Dementia & Delirium Team (who also look at depression in older patients) so I would find out and get her referred. Ask to speak to her consultants secretary about an appointment with her Consultant maybe.
Personally I don’t find 79 to be particularly old unless you’re at the end stage of a serious illness.
I have older friends in their 70s who still work part time & care for grandchildren etc.
If my Mum (sadly RIP) was giving up before she was even 80 I would be asking why.

I do really hope that your mum gets through the Covid on ICU, it must be really stressful for you.

Unfortunately sometimes it's a sign they want to go, and forcing fluids and food is just delaying the process if she has decided it's her time I think you should allow her to make that choice complete a dnr and accept it's her decision no matter how hard it is it's her right to make that choice

OP I think there are two things going on here. My mum is the same age and had a hospital admission earlier in the year, eating/drinking was a massive issue.

No cognitive impairment but she could just not make the connection between getting out, and eating. The doctor had to put her on a drip as her salt levels were low. It had been suggested that it would be better if she ate salted peanuts or plain crisps but no. "I don't like crisps". Meals routinely refused as "don't fancy it" or "I've been lying in bed all day doing nothing how could I possibly be hungry". I ended up losing my rag a bit and telling her just to bloody eat it, whether she fancied it or not.

I also think if your mum is showing signs of depression then she may just have given up. Even if she can't vocalise that to you, her actions say this is possible. Could you ask for a psychiatrist or mental health nurse to speak to her and get their opinion? Medication can also really affect appetite. Mum was on codeine which made her hugely constipated and unwilling to eat.

Hi Op, I was just wondering how your mum and your dad are doing❤️

We are having a nightmare with this. 3 months of not eating resulting in an NG tube and now she decides she will eat to get the tube out but the state she’s in, I think well now be looking at a slower and more prolonged decline . Probably worst of both worlds as quality of life is now very low. I was convinced I’d be planning a funeral right now but now trying to plan care homes. The emotional roller coaster is just mentally exhausting.

OP I hope your mum isn’t suffering too much with the covid. It is terribly worrying when you’re trying to manage very ill parents.

Totally hear you on that bunny at. Most of my dm's symptoms are to do with malnutrition caused by failure to eat, and I think it's too late to halt that damage, but she doesn't act like someone who is wanting to die - renewing her passport, badgering doctors for appointments about said symptoms, It's a headfuck really.

Thank you for asking @Rictasmorticia ❤️. Mum still in ICU. Not got Covid anymore but now has tested positive for MRSA!
The other development is that the ICU consultants think they have a diagnosis for her breathlessness & her loss of strength… a rare autoimmune condition called Myasthenia gravis which has now turned into Myasthenia Crisis. Just waiting for tests results to get a formal diagnosis. Mum is still very ill & we aren’t out of the woods by a long shot. If this is what Mum has got, it makes me even more upset how the nurses on her ward were saying Mum’s lack of cooperation was behavioural and they were getting ready to discharge her home!

@Bunnycat101 I feel your pain. Having this outlet to share experiences with others in a similar situation has been a life line for me❤️

If the "special drinks" are Ensure they are rank. Does she have any favourite foods or drinks?
At his stage it's not about a balanced diet, it's about trying to get calories and liquids in. Ultimately though, as others have said, she may just feel like she wants to go now.

Sending you strength OP. It's a rollercoaster.

If she has MG has she had a SALT swallowing assessment?

@ItsAllGoingToBeFine Mum in ICU now on a ventilator. Turns out that she may have a rare autoimmune condition which has caused her symptoms, including not eating. We are hoping with the correct medication her appetite will come back.

Hi @PermanentTemporary . We haven’t had a MG diagnosis yet so no SALT swallowing assessment. Also she is on a ventilator so I can’t imagine it will be done until she is able to breathe unaided.

Just wanted to say thinking of you ❤️

This sounds similar to my mum. She was 81. She had been going slowly downhill for quite a few months - just generally a bit depressed and not well but nothing picked up on scans. She was in hospital for a couple of months after a fall and broken arm and really again stopped eating and drinking much. She came out but went back in 7/8 weeks later - she was unable to really stand or walk at all although we attributed led it to being in so long before.

we did manage to establish that time that she was having difficulty swallowing.

She didn’t engage with physio and like your case the staff were getting frustrated. What also became clear though was she was actually losing mobility in arms as well as legs - she couldn’t quite seem to make them work. Eventually there was a provisional diagnosis of dementia although they never did any ct scans to confirm it. She also kept getting chest infections / pneumonia / collapsed lung.

I definately felt like she had given up mentally for quite some time.

it was quite horrible to see her so disengaged and nothing we could do:

@whatohwhattodo I completely understand. I’m sorry you went through this with your Mum too❤️.

i am so sorry to read your update❤️

Personally I hate to see elderly people being badgered and pestered to eat and drink when they no longer want to. I used to see it in my DM’s care home - albeit with the best intentions, I know - but it was upsetting to see people crying and whimpering and turning their heads away. True, 79 is not all that old nowadays - I’m not so far off that age myself, but I do think people who have lost control of so much of their life should be allowed that choice.

Re the fortified drinks, BTW, by all accounts they’re mostly pretty foul.