Page 2 | Very upset and confused

Icecreamlover63 · 2025-12-08T21:44:36+00:00

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

Original poster

Icecreamlover63 · 21/01/2026 05:10

I felt it important to give an update. I can’t sleep it’s 5 in the morning. Mum is now in the actively dying’, phase. Which basically means the end. She has forgotten how to swallow and has only had 15ml of water today and yesterday. This was administered by sponge to her mouth. She cannot talk she cannot open her eyes and if she does it is very intermittent. The are home said she will die in the next 5 days as people cannot survive without water. I hope she just drifts off in her sleep. The care home have been amazing to us all. Looking back I think mom had this vascular dementia for roughly ten years but it’s just gripped hold it’s avery sad way to go. The palliative nurses have given her morphine and are thinking about a syringe driver.

OP posts:

Tresd · 11/01/2026 20:21

Your poor mum and poor you. I think you’re right to review the pain meds. She shouldn’t have to suffer.

BruFord · 11/01/2026 20:18

I’m so sorry @Icecreamlover63. It’s probably a good thing that she’s in a twilight world ( presume you mean that she’s only semi-conscious) as that may reduce her suffering. I completely agree that getting her up is a bad idea, so glad that the staff agree.💐

Aworldofmyown · 11/01/2026 20:12

We are at the start of my mums vascular dementia diagnosis, your post is terrifying as her mind is already vanishing in front of us at an astonishing pace, yet I fear her body will last her many years. Its horrific and she is completely terrified of her impending suffering, yes she may not know then, but she knows now and knows her family will be witness. Like she was to her mum.
There has to be some sort of change with how we manage these awful conditions.

PermanentTemporary · 11/01/2026 19:56

I’m so sorry. I do think refusing food means she is near the end.

i think if the home is saying it’s too painful for her to hoist her out, that’s a very good approach on their behalf. I would go to the home and say how much you support them on this.

rickyrickygrimes · 11/01/2026 19:34

Why are they still feeding her?
Iis there no option to keep her comfortable and let her slip away?
Why does your sister want her to go to the day room?

Original poster

Icecreamlover63 · 11/01/2026 18:53

Update:- today I visited my Mum she is refusing food and is drinking less than 500 ml per day. She is extremely frail and now extremely thin. I’ve been told by the SALT team that she can only manage 4 teaspoons of porridge a day.

I feel like she is in a twilight world. My sister wants her to be hoisted every other day so she can sit in the communal area. But the matron said my Mum has so many bed sores that they can’t she would be in too much pain. They also said the sheer effort of her moving into a hoist and being upright would cause heart attack and she could die! So it would seem she is condemned to a bed bound existence and me I really don’t know what to do. I hate seeing her like this and cannot believe she is still alive.

I just hope that as she has started to refuse food that the end is not too far off because this really is a horrible existence x

OP posts:

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.

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.

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.

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.

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.

Lightuptheroom · 20/12/2025 19:32

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

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:

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.

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.

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?

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.

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. 💐

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 ❤️❤️❤️

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

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

Rubinia · 09/12/2025 20:12

Sending you much love and strength.

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

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.