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’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.

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.

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.

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

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

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

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

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.

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.

@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.

@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.

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

Big hugs. I don't think it matters how many times it has been near, it still shocks when the moment arrives.

My wife and I have known we would end up here for a long while, but the actual manifestation has been different to how either of us envisaged. And much faster. We were wondering whether she might be well enough to have a few days away last Thursday as she felt quite good, and now I'm here waiting for her to take her final breath.

And things will definitely never be the same. She changed my life for the better in ways I can't put into words. My final gift to her is to make sure she is as comfortable as possible at this point.

Im so sorry. My dad just died at home. I was the only one to look after him but he liked that i slept in his bed with him so I was there 24/7 for hus last ten days. It was really hard the last couple of days when he actively dying but I played him music he ans mum used to like, brushed his hair, but cold flannels on his head, used a mouth gel and held his hand. He really wanted to die at home, and he got his wish. And the people you are looking after have you.

I’m so sorry, life can be unbearably cruel. I always try and find something to be grateful for or look for the positives in a situation but sometimes that seems impossible. I hope you are doing ok this morning.

I’m so sorry you’ve lost your mum. I hope it’s some comfort that you were able to be with her at the end. I went on holiday when dad was in hospital and was scared I’d get that call when a long flight away. I absolutely understand what you mean about a birth, I’m very conscious that it’ll just be over one moment and I’m a bit worried how we’ll react afterwards. Like a birth there’s no way to prepare is there? Hugs to you.

what a wonderful thing you did for your dad in his final days. I’m sorry for your loss, it sounds like you were very close and I hope you are doing ok? Sending hugs.

DD and I sat with my mother for the last week of her life. We had wonderful support from carers and palliative nurses at night. The day before she died all the family and her friends came to see her and sat with her in turn. We thought it was a privilege that we were able to be with her at the end and we were so pleased that she had signed a DNR and we were able to refuse to allow her to be taken to hospital. Dying at home is so much better.

My beloved found the strength to let go this morning. It has been a horrible week, and a horrible few years, but she is not suffering any more. Although this end phase took us by surprise, she didn't suffer for as long as might have happened, so for that, I am thankful.

And the old add age of better to have loved and lost is also true. If I'd have known what would happen, I still would have spent every moment I could with her. She was the final piece to my puzzle, and life will be fairly awful without her. Time brings acceptance though, so with the help of gin, and the dog, we march onwards.

I'm sorry for all of you who are in this terrible limbo right now. With my mum it was just over a year ago but so fresh I can even remember the clothes I wore each day and what she was wearing.

We sat and talked as though she was still able to join in the conversation and, like others, played music she loved. Although she was declining slowly she had been fading quickly in the last week and hadn't responded to anything for the past week. She was in a care home and the carers came in every 20 mins or so to say goodbye and to check whether we needed anything. It was very peaceful at the end.

I will say that I was scared of being with her at the end but it was peaceful and she was surrounded by love. While there was nothing practical I could do I felt an overwhelming need for her to have the blanket we gave her last Christmas. There were photos of the grandchildren and the dog and the words "Take this blanket, wrap it tight, a special hug from us Goodnight!" I needed her to have that around as she died. The matron herself searched the laundry room to bring it up to the bedroom so that she was wrapped up.

I am sorry you are going through this
I went through the same thing with my mum in June, but we were not able to bring her home, we stayed in the hosptial with her for 6 days though
Once she stopped taking food and fluid, she slept for the most part although for a couple of days before she died, she did know we were there, and she recognised my son and my husband when they came to visit.
You will find he starts to sleep very deeply for most of the time over the next few days, we found it a comfort to still talk to her as if she could hear us
It was very peaceful when she passed, she hadnt woken up for the whole of the previous night and morning, not even when the nurses were moving her and she just took 2 deep breaths and that was it
I am so glad I was there but I have to say it was the week leading up to her death was probably the hardest thing I have ever done, it is excruciating and painful so please look after yourself at this time

I’m thinking of you HS and I hope you have some support around you. Come back and tell us about your lovely wife, if it would help. I hope your life won’t be awful without her, given time, I’m sure she wouldn’t want that for you. Sending love and strength.

Thank you for sharing your experience and sorry you’ve also been through such a tough time. He’s sleeping pretty consistently now and there’s not much response from him. It feels like the end is nearer. I just hope it’s peaceful and ideally when mum is holding his hand.

That’s so lovely and I am so glad it was peaceful and your mum was wrapped up in your love. I am also scared of ‘the end’ but I will be there if I can. He seems peaceful and comfortable and ready to go now. His dementia took him from us a while ago but he knew who we were and there were glimpses of him still. I miss that. Thank you for sharing your experience with your mum and I’m sorry for your loss