Mum in care home and barely eating/drinking - next steps?

[FinallyMovingHouse]

Dear lovely vipers/violets,

I've had a couple of threads here in the last 8 weeks or so with regards to DMum (90 next month) who had chest infection in mid Dec, admittance to hospital with assumption of UTI as her mid stage alzheimers was suddenly off the charts. Hospital confirmed no UTI, but confirmed heart failure. She improved a bit so came home. Was terrible for the 24 hours home, moaning, anxiety plus clearly still unwell with the cough and didn't sleep at all, incontinent and calling out for 'mummy' (me). DDad admitted he could no longer cope with caring for her (he's a frail 89 yrs). An hour later, was complaining of chest pain, was ambulanced to another hospital and admitted for 5 days. Meds altered, chest infection finally started to improve but Alzheimers still not improved. We managed to find her a place in a lovely care home with a dementia ward, and mum was incensed for the first 5 minutes upon finding out (she saw the sign outside). Mum was very much like herself for that time, but then forgot where she was again and it's been a hotel, flying school etc since that time.

Long story short, she's absolutely not settling despite dad trying daily visits, then less often, as advised. She is losing lots of weight and is now barely eating or drinking and collapsed on my dad yesterday. The staff came and sorted, but nothing medically wrong, just lack of fluids. She's been seen by a GP 3 times now and they've agree to put her on anti anxiety meds to see if it helps. My theory is that even though it's now looking like later stage alzheimers, this is now my very determined mum's way of saying she's had enough and will not put up with this. She's started saying that she wants to die and keeps asking to see her dead brother.

What will happen with regards to not eating/drinking? Will they or can they force her? I don't want them to, and my Dsis and I hold the POAs and I'm now mum's representative under a DOLS carried out last week.

My dad is just permanently guilty at her being so unhappy and has threatened to take her out of the home (which would not work....they'd both be in crisis within 24 hours I suspect). My Dsis and I are both utter pragmatists and know that mum's in the right place, but I just don't know what to think now....what on earth do we do now and does this mean that mum will just effectively shut herself down? Has anyone experienced this and what happened?

x

It's so hard, watching a parent declining, and I'm sorry you're going through it.

My own experience with my dad in a care home is that they will try to encourage eating and drinking but can't really force it.

I just took one day at a time, some days were better than others...what do the care home say, the matron will be experienced in this x

Firstly just a note of solidarity, it’s horrible to be in this position but alas common. A few tips, one is fortified drinks and bars,, 2 is whatever she actually fancies even if really unhealthy (pink wafer biscuits was dgm’s go to) and 3 sometimes you need to actually coax to eat. I used to bring in food and feed her, she ate for me and nobody else but I used the same no nonsense approach I used for my previously fussy autistic dd, but approach needs to vary obviously.

try different things something may work, but alas sometimes it’s just their dementia has reached a certain point and no longer is food something they want. Hard to watch, even 6 years later hard when thinking back but she still wanted those pink wafers, go figure

Thanks. The care home are concerned about the speed of the drop in body condition, but she really does seem to have just given up. They are encouraging to drink, but to be honest, she was terrible with this when home with dad too, so we know how hard it can be to persuade to even take a sip.

She's always been a rather difficult character, as 'she is right', always and there are no alternatives to her way (my Dsis and I had fun as teens...not).

Thanks gototogo. I will see what the home say about snacks and fortified drinks. The issue also is that I'm a 3 hour drive away and can only see her every few weeks. My Dsis is working 5 plus days a week and so it's dad who is the most regular visitor.

In my experience of both grandmothers having Alzheimer’s and having to go to a home… they never settle in. They’re generally too far gone and confused by everything. Try her on sugary and sweet foods - my gran would eat custard pots and trifle etc and biscuits. But that was pretty much it. Both passed within a year, unhappy, frail, confused and yes not wanting to be alive any more. Very much reduced to babyness again.

Im so sorry.

MIL died at Xmas in a dementia care home. The staff were absolutely wonderful, but as you intimate, they cannot (and should not) force a resident to eat or drink.

She may just shut down, but if she is still lively it may be a temporary blip where her brain is complaining about being moved to a home.

Do you feel she is dying? With MIL there was a point where we thought so, followed a couple of weeks later with an intimation from the doc and nurse in charge of dementia care that it would be a kindness not to treat any more infections. She slept , and died a week or so later.

Just a note on the "distance-guilt"... We were there all the time, encouraging food, drink, wakefulness - she still declined.

So sorry you are going through it all.

I'm sorry to hear about your mother. My mother was in a dementia care home and settled in well, but she went at the 'moderate' stage rather than advanced. She died there last year.

Your mother wasn't happy at home, she isn't happy in the care home - sadly the hard truth is she will not be happy wherever she is. The location isn't the problem, being happy is no longer on the agenda.

The carers will do their best and encourage and offer fluids and various foods, but they cannot force her to accept them. And realistically you would not want them to. It has to be her choice, it is one of the few choices she has left.

im so sorry, it’s very hard.

This is dementia. It is a normal part of the progression for people to eat/drink less, though you can get fluctuations as well.

Talk to the manager/lead nurse, face to face if you can. We asked them not to wake mum for food/drink, not to force her. They agreed. We were long past agreeing no hospital admissions, no treatment. I would say it took 4 months. She slept a lot, sometimes had days when she ate.

Thanks, you're all lovely.
As of this weekend, the home have advised think she's entering end of life stage, and we're making sure that everyone knows what we want to happen; basically anything that is as kind on mum as possible, No hospital admissions etc.
She's sipping tiny amounts every now and again but all she's eaten in the last 2 days is a teaspoon of yogurt and that's it. Having said that, she's speaking to us, especially when we first arrive and is very pleased to see us. She knows that we're her family and she loves us, although not necessarily who is who.

I've just lost my mum and she went through this stage. I could see she had given up and she died a few days later.

I did everything I could for her, not just at the end but for years, and it is such a relief now she's died to know that. So keep at it although I know how exhausting it is. You will be so glad you did.

Good luck x

Dad stopped eating and drinking (dementia with lewy bodies) and was admitted to hospital to be put on a drip to give him one last chance. He didn't rally and went back to the care home to receive palliative care. He died a week later. It's horrible seeing your parent go through this but soldiering on when they've already checked out is worse. Much love.

Another one here who has been through it too. It’s so hard but if it’s her time then make sure she’s comfortable but don’t take any extraordinary measures. She’s had a long life and now has dementia. She will not get better. The best for everyone is for her to pass as peacefully as possible.

sending love.

Im sorry your relative is refusng food and drink but she may have unconsciously made her choice.

Sometimes refusing food and drink really is a sign that the person has given up and wants to end it My grandmother was very frail in her 90s and I know she wanted to die. She would not have done anything herself because she had converted to the Catholic faith and believed it a sin. She asked my aunt to fetch the priest one evening. After she had made confession she appeared so peaceful and refused all food. Nor would she eat the following day. However my aunt said she was at peace. She died that day in my aunts arms from a massive heart attack. She was compus mentis to the end and I believe she foresaw her death and wanted to prepare in the best way she knew.

It's a very hard thing to watch, having recently been though it with my Mum. She was refusing to eat more than a quarter of a teaspoonful of anything, and said things tasted horrible. The carer said that this can be part of the body shutting down. So its not easy to unravel whether she won't eat because she wants to die, or can't eat because she is dying.

Either way the best thing you can do is to try to make sure she is drinking, as this will make her more comfortable, and go on offering minute amounts of food.

Above all take comfort in the fact that she is in the best place to be cared for, whether she recognises it or not.

TBH in my mother’s care home (dementia only) I’ve witnessed more than once residents with fairly advanced dementia being badgered and pestered to eat and drink when they no longer wanted to. All done with the best of intentions, I know, but it was difficult to see someone crying and whimpering and repeatedly turning their head away.
If someone in that sort of condition, or anyone who’s both very elderly and in poor health anyway, chooses to refuse food and drink IMO they should be allowed that choice.

I was determined that I’d never allow it with my DM, and made sure the staff knew, but fortunately the situation never arose.

Of course when someone is on the way out anyway, it’s a different scenario. As a doctor once put it, ‘They are not dying because they’re not eating and drinking. They’re not eating and drinking because they’re dying.’

There comes a stage where the body can no longer process food and drink.

Thanks to you all. Mum passed last week, very peacefully. x

I’m pleased it was a peaceful end. Hope you and your dad and sister can support each other through the sadness.

so sorry for your loss. ❤️

So sorry for your loss and glad it was peaceful x

I am sorry for your loss, but relieved that the end was peaceful. It sounds like she was ready to go.

Sorry to hear about your mother . Glad for you and your family that it was not a long drawn out journey for her. Hope the happy memories will give you all some comfort in the days ahead. 💐

Sorry to hear about your mother 💐