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Elderly parents
Original poster

Very upset and confused

57 replies

Icecreamlover63 · 08/12/2025 21:44

Good Evening,
My Mum is in a care home. She has been there since January 2023.
she has vascular dementia and her condition is upsetting and horrible.
My Mum cannot walk and hasn’t walked since December 2022.
My Mum is double incontient.
My Mum cannot hear at all.
My Mum has now lost the ability to talk.
She is constantly coughing it actually sound like she has a permanent chest infection and does not recognise either myself or my brother.

She has been on end of life care since July 2025. Anticipatory drugs have been prescribed by her GP and are at the home and are ready. Sadly she has as few bed sores and even though the home turn her they are not healing at all
Right now she has 400ml of fluids daily and the tiniest amount of porridge daily.

I literally feel like this is cruelty beyond words. As lots of people read these posts I would be very interested to know … if your parent was in this situation, how long did they live for?
it’s very disturbing to watch anyone go through this and I know my brother is finding it very difficult.
so any feedback would be gratefully received.
Thank you

OP posts:
Holesintheground · 08/12/2025 21:49

I'm so sorry. It is a very cruel condition. I wish for a peaceful release for your mum as soon as possible. I can't comment about the timing as my dad died before he reached this stage, thankfully, but I do understand your suffering. 💐 I am assuming you have agreed no active treatment for any flu, pneumonia or similar.

helpfulperson · 08/12/2025 21:58

Are they managing to treat any pain effectively? It is horrible to watch but please do remember that she won't be aware. If you think they aren't managing her pain then you can push for a review of this. I hope she gets a peaceful ending soon.

Seeingadistance · 08/12/2025 22:43

You have all my sympathy, OP. My poor DF is in a very similar situation. He lost the ability to stand or walk 3 and half years ago, and has been in a nursing home for 3 years come Friday. 13 months ago we were told he was end of life, but he's still, well, I was going to say, with us, but he really isn't. The only thing he can do now is be spoon fed mush and drink from a cup - more or less.

It's like a form of hideous, never-ending torture. I can't bear it, and I know my father would have hated to end up like this.

I didn't think he would live to see 90, but in May this year he was 91, and at this rate I sometimes think he'l outlive us all. My sister, mother and I are all have health problems now, and father is barely alive, but stable. It defies all understanding.

PermanentTemporary · 09/12/2025 10:32

Sympathies. My mother was first officially at end of life 2 years ago. A month ago a GP looked at me as if I was crazy when I asked if she might be alive on Monday. And here she still is. It is too horrible to think about mostly.

Ask the care home how they are assessing pain, ask to see the scores. There are pain assessments done by carers for people with dementia. Ask for a review of pain relief and coughing by the GP to ask if any symptoms could be better managed, without prolonging life further. There may not be anything that would manage the symptoms without prolonging life, but you could ask.

Lobelia123 · 09/12/2025 10:37

A merciful dose of morphine eased my moms suffering and passage in the hospital - administered above board in the course of her treatment, but I so often think what a blessed release it was for her - it just enabled her to slip peacefully away. I truly hope things ease and things are resolved for all of you - it must be so hard.

IthinkIsawahairbrushbackthere · 09/12/2025 12:49

My DM lasted a week without food or drink. The end of life drugs were delivered on the Friday evening and she died at lunch time on Sunday. She didn't actually need them in the end. We were sitting with her and decided we would ask the nurse for something for her breathing but while my cousin was looking for the nurse she passed away.

Original poster
Icecreamlover63 · 09/12/2025 20:00

I have today, asked for a review of her pain relief. I have also spoken at length to the care manager and said that this just seems so inhumane. She completely agreed with me.

She also said that once the voice goes the ability to swallow often follows and this will sadly be near the end. I just hope for my mums sake she is right, because this is just a horrible existence for her. I have to say her care home are just lovely they are so accommodating and kind. They have put me in touch with the community nurse who visits every other day. She was lovely too. I am incredibly grateful to all who have reached out and replied to me thank you.

OP posts:
Whatsthatsheila · 09/12/2025 20:03

Icecreamlover63 · 09/12/2025 20:00

I have today, asked for a review of her pain relief. I have also spoken at length to the care manager and said that this just seems so inhumane. She completely agreed with me.

She also said that once the voice goes the ability to swallow often follows and this will sadly be near the end. I just hope for my mums sake she is right, because this is just a horrible existence for her. I have to say her care home are just lovely they are so accommodating and kind. They have put me in touch with the community nurse who visits every other day. She was lovely too. I am incredibly grateful to all who have reached out and replied to me thank you.

It’s just awful isn’t it?

I mean this with the best intentions - I hope it isn’t too long.

Graciously · 09/12/2025 20:07

At the stage your mum is at my mum took 6 weeks to die. She just stopped eating, continued drinking tea right to the end and died very peacefully

Rubinia · 09/12/2025 20:12

Sending you much love and strength.

Raspberrymoon49 · 09/12/2025 20:16

Am so sorry OP, went through this with my wonderful dad, it’s so cruel and the end is a blessed relief for you both, I wish it wasn’t this way, sadly so many have this experience, I hope you are holding on somehow, wouldn’t wish this on anyone

user86397409754 · 09/12/2025 20:33

I’m so sorry you’re in this position OP. I think the only thing you can do is keep pressing for the end of life drugs if you think she’s in pain. They were so reluctant to administer them to my relative because “they’re very addictive you know…” personally I don’t think that’s a great concern when you’re not far off 100 and no longer know your own name🙄
wishing you strength X

DramaQueenlady · 09/12/2025 20:43

Sending all the love and support in the world. Been there its the worst possible thing in the world ❤️❤️❤️

Tdcp · 09/12/2025 23:00

Icecreamlover63 · 09/12/2025 20:00

I have today, asked for a review of her pain relief. I have also spoken at length to the care manager and said that this just seems so inhumane. She completely agreed with me.

She also said that once the voice goes the ability to swallow often follows and this will sadly be near the end. I just hope for my mums sake she is right, because this is just a horrible existence for her. I have to say her care home are just lovely they are so accommodating and kind. They have put me in touch with the community nurse who visits every other day. She was lovely too. I am incredibly grateful to all who have reached out and replied to me thank you.

I'm so sorry you're going through this. I have no first hand experience but my friends parents both had vascular dementia, they both died within a week of reaching this stage. I hope she finds the peace she deserves soon. 💐

Pistachiocake · 09/12/2025 23:03

It kept happening-they would say a week, then she rallied. Went on for years. The worst thing was that we weren't allowed to visit for a lot of it, due to Covid rules (you were when they thought it was end of life, but that wasn't the case all the time). I'd always thought they knew, but the time it was the end, they didn't predict it, so we didn't get to be with her.
It was awful, I hope things aren't as bad for you. I am so sorry.

RosesAndHellebores · 09/12/2025 23:07

When my grandma was approaching thus stage, in 2000, my mother and grandad bought her a vibrating bed to avoid/prevent bed sores. Might that help?

Flowers
SleafordSods · 09/12/2025 23:15

I’m so sorry for everything you and your DM are going through. My DMIL had vascular dementia. When she was first diagnosed, I had no idea what a truly horrendous disease ot can turn out to be.

Thankfully she caught Covid before getting too far. It did take her a few weeks of barely eating or drinking to die, which was awful, but at least it wasn’t prolonged over months or even years.

Bunnycat101 · 09/12/2025 23:29

I’ve been convinced my mum was about to die for at least 3 months. It is excruciating and has made me even more resolute that i don’t want intervention to keep me in a half life If I ever get to that point. When someone has a horrible quality of life I think it is just so hard to watch the decline. You feel guilty for wanting it to end but guilty for wanting more time too. I feel that too much intervention has happened which is now prolonging the inevitable rather than presenting a realistic prospect of a cure.

Original poster
Icecreamlover63 · 20/12/2025 08:40

I 100% agree with you. Until you have witness this nobody can explain. I feel like my Mum is experiencing a living death it’s just disgusting

OP posts:
Lightuptheroom · 20/12/2025 19:32

It varies massively, my MIL was around 8 weeks, my dad was 5 months

ThisHazelPombear · 23/12/2025 08:34

When they are that frail the skin is very fragile and can’t heal even if the home staff turn her.

SheinIsShite · 23/12/2025 19:54

Lots of love to you, OP. The limbo is horrible both for the elderly person suffering, and their family members. Take care.

DappledOliveGroves · 23/12/2025 20:08

From a practical perspective (and something I had no idea about when my mother was in a care home with dementia) is that when someone is on end of life care, in circumstances where they are wholly or partially self-funding, the move to end of life care should immediately trigger full continuing health care funding. I had no idea about this and so for the last four months of my mother’s life, when she was technically end of life, she was still self-funded.

Wishing you all the best with this horrible disease.

hattie43 · 23/12/2025 20:17

I really do think we need an option to check out of life when we get like this. a shell of a person.
I’d be the first to take a pill . I’m very sorry you are in this sad situation OP and hope your mum is as pain free and calm as possible.

SleafordSods · 23/12/2025 20:41

DappledOliveGroves · 23/12/2025 20:08

From a practical perspective (and something I had no idea about when my mother was in a care home with dementia) is that when someone is on end of life care, in circumstances where they are wholly or partially self-funding, the move to end of life care should immediately trigger full continuing health care funding. I had no idea about this and so for the last four months of my mother’s life, when she was technically end of life, she was still self-funded.

Wishing you all the best with this horrible disease.

I didn’t know that either. I have 2 elderly relatives who are self funding and both have Cancer although we’re not at end of life yet. Will bear it in mind though, thank you.