End of life - hand hold and advice

[walledgarden6]

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.

I am so touched to read all of these messages. Someone very close has just been admitted to a hospice. They are looking after her so well. All her family are in attendance. I just want to cry my eyes out. She is young and has a young family. . It is just too, too hard.

I’m so sorry to hear that. You’re right it’s too too hard sometimes, especially so when there’s a young family involved. Heartbreaking. I hope you get to spend some time with them and get to tell them everything you want to say. Sending love and hugs to you.

@HappiestSleepinghow are you doing?

My dad is still hanging in there despite several nurses telling us over the past few days that the end is imminent. He’s mostly unconscious and peaceful but has agitated episodes which are distressing. Hardly slept. This is hard.

Worth asking the medics about meds to help with his agitation.
Don't worry about the end. I take it you've probably not been with someone when they died before? I found that I recognised (and accepted) what had happened on a very primeval level.
Dead people are still the people you knew, but now have a much, much smaller set of needs (to be treated with dignity - tbh that's really our need) and they are safe from suffering and grief.
I hope that your Dad will be well cared for as long as he needs it, and that you will have peace of mind that you did what you could for him. 💐

@walledgarden6 the last few days and hours are hard. I just sat by my lovely MIL for as long as I could, she was asleep but responded to our voices until the last few hours. The nurses can give your DF meds for the agitation if you wish, just to allow him calm and peace. Sending you love.

@HappiestSleeping I'm so sorry for your loss. Your line about ‘gin and the dog’ is true here, too. I hope your dog brings you peace and some smiles.

My DM had meds for the rattle in her lungs, for agitation and for nausea. The prescription was delivered on Friday and she died on the Sunday without being given any of it. In fact it was when my cousin was gone to ask if it was time to do something to ease the rattle she opened her eyes and gasped and then was gone within half an hour so she never had the meds. I know they were available because my cousin had fetched them from the pharmacy herself as the home were short staffed.

My lovely dad died this afternoon. It was peaceful at the end, his breathing slowed right down, took a few slow deep breaths and he slipped away. Just in case that’s useful for anyone reading this in future (I had no idea what to expect). The nurse did come and give him some meds. Mum and I were both with him and I’m sad but relieved it’s over and he’s not suffering any longer.

Thank you to everyone for your words of comfort and advice, I really appreciate it.

I’m so sorry for your loss @walledgarden6 . I’m glad your dad was peaceful and you were able to be with him.

I'm so sorry for your loss. Hopefully when you look back you will find comfort in knowing he was peaceful and you were with him.

I am sorry to read of your loss. I haven't been able to read anything other than superficial things in the last few weeks.

I am doing OK thanks, starting to get to grips with my new reality. It totally sucks. I am wading through all the legal processes, all the shit to do when one least feels like doing anything.

As you say, it is very sad, but we have to take comfort that the departed are no longer suffering.

@HappiestSleeping thanks for coming back and letting us know how you are. I’m sure everything feels so difficult right now. I don’t have anything helpful to say I’m afraid but just know there’s a tiny corner of the internet thinking about you and wishing you well.

You are right about all the admin that comes with someone dying. One of the things that’s really helped me through the past couple of weeks is the kindness of people - family friends colleagues and strangers alike. I’ve seen a really nice slice of humanity that I’ve never experienced before and I’m grateful for that. I hope you’ve experienced similar kindness.

Thank you. It is a strange thing how people going through similar in this tiny corner of the internet can be comforting. It's what this sort of site should be, and sometimes is about.

You said I might tell you all about her but I wouldn't know where to start. We didn't get together until late in life. We later found out we had been in many of the same places when we were younger, but fate didn't have us meet then. Possibly a good job as I was an idiot when I was younger and probably wouldn't have recognised the fabulous person she was. I can't get used to speaking in the past tense, it sucks. I don't think we ever had a cross word. We disagreed, but it was funny rather than angsty. We just clicked. I feel like a part of me is missing. She's everywhere I look, and I hate that I can't talk to her anymore. It's not stopping me of course, but it would be better if she could actually hear me. There are so many things I still want to tell her about how every single part of me is better because of her. Our main rule was that she was never wrong. Even if it wasn't me, it wasn't her either, whatever it was, and that worked fine. It made us laugh. Laughing is so important, although we didn't get to do much of that in the latter stages.

I could write for hours about every little thing, but I imagine you get the gist.

How are you doing?