Very upset and confused

[Icecreamlover63]

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

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

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?

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.

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.

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.💐

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

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.

I hope that you are feeling supported, and that everything is peaceful for your mum@Icecreamlover63, this must be so difficult for you.

💐 for you in this dark night @Icecreamlover63, I hope you and your mum can find peace x

The end will be peace for both of you. When my mum died I only felt relief because she wasn’t suffering any longer.

I'm glad she has a proper care plan and is able to die in the care home, not be taken unnecessarily into a noisy hospital. If you visit, it might be nice to play some music on your phone, quietly by her ear on the pillow. Remember that babies can hear in the womb and we think it's one of the last things to go.

Sending you lots of love. It's such a hard time. I hope it is all peaceful and gentle for both of you.

@Icecreamlover63 I hope you are getting the support you need. It's a tough wait.

Sending you so many hugs, please don't be afraid to step outside etc when it all feels too heavy. The syringe driver is simply to manage her pain with minimal interference xx

I'm sorry youre going through this. I lost my mum in the same way. She died 3 years after she went into the care home. In the end, she just wasn't able to open her mouth to eat or drink :-( weirdly, I feel that I subconsciously knew it was coming as I took her outfit she wore to my wedding to the dry cleaners so that I could dress her in it for her funeral....a week later, she was gone.

I had stated at the time that when she reached end of life that I wanted her kept at the care home and not to ring an ambulance. HOWEVER, when I got the call, I was in the airport coming home from holiday and as I couldn't see mum to really gauge how frail she was and how much she was suffering, I asked them to send her to hospital. It actually turned out to be the best decision. I feel in a care home she may have been given some medication and some attention but in the hospital, they were able to quickly increase her syringe driver when she was uncomfortable, she had such kind nurses checking on her, giving us gel for her mouth to ensure her tongue wasn't dry, putting face cream on her. Anyway, I just felt the care at the hospital was far superior to a care home so thats just something to bare in mind. I will say that she was on the syringe driver in hospital from Sunday night until Thursday morning before she passed. The only time I left her was to go for my 12 week scan, so I was able to whisper to her that she was going to be a granny again which was a nice secret for the two of us.

Honestly, I was so bloody happy for her when she passed away. I wouldn't that disease on my worst enemy. It's an awful thing to watch anyone go through. Sending hugs and wishing your mum some peace x

Its such a horrible ending that I believe if I'd been left on my own with my mum, I would have been tempted to put a pillow over her face and put her out of her misery

Hoping it’s not too long before your mum is released from this state and passes away peacefully. Absolutely horrendous for you and your brother. Sending you lots of love and hugs.

Sending you love and support Op. I wish your mum a peaceful passing, and some relief and peace for you. 💐

I’m so sorry, I hope your DM passes peacefully

thinking of you OP x

Mum died at 6:30pm yesterday. She was I fighter and didn’t give up easily she never wanted to die. The palliative team came at 4pm and administered morphine and she just relaxed and drifted off to sleep. My brother was with her and her sister came in the afternoon and I was with her in the morning. So everyone she loved saw her at the end.
i cannot fault the home she was always clean always looked after and genuinely cared for.
Thank you all for being there for me I feel very fortunate to have this.

Thanks for letting us know. Good to know she died peacefully. Hope you’re as ok as you can be x

She’s at peace and pain-free now. 💐

I'm glad the end was peaceful. Take time to look after yourself and remember that there is no single way to grieve that is right for everyone.

Thinking of you🌺