Mum refusing to eat

[Goingsomewhere]

My mum has dementia and moved into a care home 6 months ago. She was doing so well, put on weight, seemed happier and more relaxed and less lonely. She had covid in early Dec and her symptoms were very mild, but she has refused to eat since then, only eating a banana or a small piece of toast a day and not drinking properly. Her dementia has also become much worse to the point where she just wanders aimlessly and doesn't recognise us. She has lost 6 kg and is severely anaemic. She also refuses to take her meds anymore so has come off her antidepressant suddenly. Has anyone else experienced this? Will she be forced into the hospital if this carries on? The home won't tell me what might happen...

She should have a GP or physician who is over the care home. Sometimes they will try intravenous medications, 'sneaky' ways of getting meds down them (crushing them in ice cream, etc). But if nothing the care home does works, once she starts to lose more weight, stops hydrating, stops urinating, etc., they will send her to the hospital. A feeding tube (as last resort), intravenous fluids, and medications can be started there.

This is such a nasty horrible disease Goingsomewhere. My Mum died from dementia last January.

Sadly refusing to eat and drink is one of the characteristics of the disease, and if your Mum's dementia is getting worse, then it's likely her refusal to eat or drink is due to her dementia, not the recent covid infection.

have you had a conversation with the home manager and /or the GP about how you want your Mum to be cared for as her condition gets worse ? If not may I suggest you ask for an appointment to do so. An appointment so that there's plenty of time to talk through options rather than catching someone on the fly.

No one is going to force your Mum into hospital. There was no way my Mum would have tolerated an IV or feeding tube and I know she wasn't unique in this. It's surprising how little she could survive on, both fluids and food.

It's so very sad

When my mum got to this stage, she did go into hospital to be given IV antibiotics for an infection - only once though as after her awful experience while in hospital, we refused to let her be admitted again. This was agreed with the care home and her GP and written in her care plan. But mum was 89 years old and getting very frail, but was still fighting the carers when they tried to give her personal care. She once bit her GP when she tried to take her blood pressure and caused a paramedic to have a nose bleed! In the end, she died after about six weeks of refusing most food and drink, peacefully in her room at the care home with her family by her side.

That was the right decision for her, had she gone into hospital again, her death would have been a lot more traumatic I feel. It’s up to you and any siblings to make such decisions on your mums behalf if you have POA.

It’s a very difficult time, dementia can be an awful illness to suffer from.

Does someone in your family have the right to discuss your mother’s care with the home and her GP? Has she ever discussed with you how she would like to be cared for in the event she can’t make those decisions herself?

If it was my mother, I’d be looking to get an appointment to discuss what’s next and I’d advocate for whatever it was my mother said she’d like. If she hasn’t specified, then you make the best decision you can for her.

I tell my kids regularly, that if I get Alzheimer’s or severe dementia that there shall be no feeding tubes or medical interventions other than to keep me comfortable and out of pain.

My mother is in a similar position. The facility she is in gives her supplement drinks like Fortisip or Ensure as she will drink but will not eat.

You state she is not drinking much water, so I hope a supplement might help.

Best wishes and please take care of yourself through these worrying times. Dementia is a horrible disease.

I don’t think your mother will be taken to hospital, surely it is better that she stays in the care home as she would get very distressed if she is moved. I also have an elderly relative who is not eating and really there is not a lot you can do about it. This is what old people do sometimes when they have had enough.

I used to look after dementia patients. Unfortunately this is just one of the stages of the disease, I'm sorry it's bloody awful. Once they start to refuse food and drink there isn't much they can be done as food can't be forced it is considered abuse. Have you discussed anything with the home? What is written in your mums care plan ?

I'll have to discuss it with the home I think. There's no way she'd want to be in hospital, tube fed. She'd hate that for herself.

She just slammed her bedroom door in my face today. She hates me.

@Goingsomewhere she doesn’t hate you. Dementia is maybe the cruelest of diseases. She likely doesn’t even know who you are.

My MIL was in the throes of this for many years and had no idea who her kids were for several years before she died. And she had been such a dynamic and fun person to be around. It’s heartbreaking.

Sounds to me, sadly - I have far too much experience of it - that these things are the natural progression of the disease. Hospital is a terrible place for anyone with dementia, when they can’t understand what is going on, or why, so I wouldn’t ever have wanted my DM with dementia in there* again unless it was absolutely necessary, e.g. a 2nd broken hip.
*though I have to say they were very good with her.

@Lizzieregina , my DM was the same. Didn’t know any of us for a few years before she finally died at 97. It happened quite suddenly - no actual illness involved - one week her eyes would light up when she saw me coming - the next, I was just a ‘nice lady’ who made her cups of tea and brought her chocolate.
We actually lost her long before she died.
Beyond a certain stage I was very firmly against any treatment to ‘keep her going’ for the sake of it - to me (re someone already doubly incontinent etc.) it would have been verging on cruelty - and the care home staff agreed absolutely.

@KnowledgeableMomma they won’t do IV fluids or medications in a care home. And we don’t put feeding tubes into dementia patients, it’s cruel and doesn’t actually make them live longer and comes with associated risks. We only do feeding tubes if we think it’s a reversible cause and sadly advanced dementia is not.

OP I hope you’re ok, get the GP involved would be first steps xx

Just as an update, she's deteriorated to the extent that the care home can't cope with her. She's being sectioned. Hopefully, that'll mean they can get her back on the medication that was helping her so much

I’m so sorry @Goingsomewhere
Are you allowed to visit?

When MIL stopped eating and drinking it was the start of the final decline, and she was just made comfortable.

Sorry to hear this. But I didn't realise they would section an elderly person with dementia ? Shouldn't she be going into a nursing home instead ?

they will section patients with dementia if they are violent and or aggressive to keep both themselves and others safe
A nursing home wouldn't be enough

How's your DM getting on now? It sounds like a bit of a traumatic time for you all

Not great. Still being aggressive to staff and family. Discussing the plan for her next week.