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Original poster

End of life - hand hold and advice

38 replies

walledgarden6 · 28/08/2025 21:07

My poor dad was discharged from hospital two and a half weeks ago to receive end of life care at home with mum (what she wanted). He’s late 80s, has vascular dementia, was pretty frail and immobile already, fully incontinent, but had a big stroke early July and spent 6 weeks in hospital. He didn’t recover, lost the ability to speak or swallow and the decision was made to stop all meds and remove his feeding tube about 4 weeks ago. He was taking the odd sip of juice until a few days ago but now that has stopped. It’s so hard watching him slowly fade and waste away. I feel terribly guilty for wishing him gone but I do, I just don’t want him and mum to suffer any longer. I know that sadly lots of people have been in this position, does anyone have any words of advice, or comfort? Is there anything practical I can do? Mum and I have started to discuss and ageee vague funeral plans but I can’t bring myself to do much more than that. The care and support mum and dad have received has been amazing though; some people are just so incredibly kind.

OP posts:
Losingtheplot2016 · 29/08/2025 04:07

Just joining in. I went on holiday last week and mum was poorly. I knew she was getting worse this week, but today I got a call on the drive back home. I arrived at her home at 2 and she died at 10.30. My brother got here two hours later.
i have to admit that at 5pm today she was very agitated and I felt so frustrated with the uncertainty. She’s been ill and near to death many times in the last few years - but now I’m finding it a shock we are finally here and it’s been so quick.
Death is so like birth - it feels like it might go on forever but then suddenly it’s over and things will never be the same. I’ve found it easier this time as Im not looking after a parent at the same time as losing one
Lots of love to you xxx

HappiestSleeping · 29/08/2025 03:51

walledgarden6 · 28/08/2025 22:57

@HappiestSleeping I’m so sorry you’re going through it with your wife, and regardless of where you are, you are together and that’s the main thing. I hope you have people around you to look after you too, hospital rooms can be terribly lonely places so big hugs back to you. We also have the sponge things and are also using Vaseline to keep dad’s lips from drying. Lots of pillows definitely help too. I hope you are managing to get some rest, being tired makes everything so much worse. My heart goes out to you and your wife.

Thank you. This part totally sucks. We are only in our 50s too, so it is way too early. Life is very strange sometimes.

Original poster
walledgarden6 · 28/08/2025 22:57

@HappiestSleeping I’m so sorry you’re going through it with your wife, and regardless of where you are, you are together and that’s the main thing. I hope you have people around you to look after you too, hospital rooms can be terribly lonely places so big hugs back to you. We also have the sponge things and are also using Vaseline to keep dad’s lips from drying. Lots of pillows definitely help too. I hope you are managing to get some rest, being tired makes everything so much worse. My heart goes out to you and your wife.

OP posts:
Original poster
walledgarden6 · 28/08/2025 22:49

@neverhadnooneever thank you for that. Sometimes I wonder if it was the right thing to bring him home as it’s so hard for mum (even though it’s what she wanted) but hearing that was definitely a comfort.

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HappiestSleeping · 28/08/2025 22:46

Solidarity @walledgarden6 I am currently next to my wife who is end of life, so I am in a similar boat. I haven't left her bedside, and it has been five days now. Unfortunately, we didn't get to be at home, although I wish we had, so we are in hospital, but fortunately in a room.

It is so tough, but hang in there, and big hug from someone going through similar right now. I have been using the sponge stick things to keep my wife's lips from drying too much, and a pillow between her knees while she's on her side to stop sores forming.

Original poster
walledgarden6 · 28/08/2025 22:46

Thank you all for your replies. He can definitely still hear us - he raised his eyebrows when I said hello to him earlier in the same way he used to, so I’ll keep chatting to him when he’s awake and we are playing his favourite music. @Leo2001@neverhadnooneeverI’m so in awe of people who do the jobs you do. You’re wonderful people, and I hope you know how much you touch people’s lives. My dad’s carers are incredible with him, and they have my mum in stitches laughing when they visit four times a day, which is no mean feat in the circumstances. I’ll be forever thankful for them.

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OLDERME · 28/08/2025 22:38

You are doing so well, even if you feel heartbroken and helpless. Talk where you can, memories from your childhood ,touch him and massage his hands and gently his face. Play music that you know he likes. And tell him what a good Dad he has been to you. It is only my opinion, but it is what I would like to happen if it were me. Xx

neverhadnooneever · 28/08/2025 22:08

I work as an end of life carer. My words of comfort are…..Kings and Queens die in their own beds and the lucky ones…and that’s your lovely Dad x

Leo2001 · 28/08/2025 22:04

Hearing is 5he last thing to go and I know this as its my job to look after such people, just visit and talk to them keep it calm and that's all you can do, pictures near by if loved ones is a good idea x

stravagante · 28/08/2025 21:50

No advice other than to say keep chatting to him. I am sorry you're going through this. It is awful.

Justbecauseyoucandoesntmeanyoushould · 28/08/2025 21:48

I lost my DM a couple of years ago to Alzheimer's. Her death was a long time coming and, yes, there were times I wished it were over. There's no need to feel any guilt for those thoughts. She stopped eating and drinking the last week and was just in bed. I spent a lot of time with her that week and I found myself running out of things to say. I got my phone out, found music she'd loved when I was younger and I sang to YouTube! It meant she could hear my voice, the songs brought back many memories and singing made me less sad.

Soontobe60 · 28/08/2025 21:26

If he is no longer taking fluids, he likely will last maybe a week or so. My stepfather lasted 8 days in this state, gradually declining and barely conscious for the last 4 days. We sat with him, played his favourite songs and he slipped away peacefully.

YetanotherNC25 · 28/08/2025 21:22

I’m so sorry you’re going through this. It’s truly awful.
I sat with my DGM for the last few days albeit in hospital and watching her slip away was heartbreaking. It was about 2 days from the time she stopped taking sips of water which felt like forever.
We kept talking and reminiscing, convinced she could hear us. They say hearing is one of the last senses to go. We read to her (she liked magazines) and I fanned her to cool her down as she was really warm. It helped us to pass the time whilst she slipped in an out of consciousness.
We were all pretty numb when it finally happened but relieved she was at peace.
Others may have more advice, but please do look after yourself and your DM, it’s tough going and you need regular breaks or it’ll consume you.
Also be prepared for a range of emotions from everyone, it’s a difficult time and there’s no right way to be. People process this in different ways. Take care.