DM on end of life pathway

[Witchlite]

DM is on end of life pathway. Fully dosed up on massive doses of painkillers and anti psychotics as she has stage 7 Alzheimer’s mixed with vascular dementia and broken bones. Absolutely no hope of recovery - but it’s taking so long. She can’t eat or drink as aspirates all by mouth. We spent hours trying to get food into her before this last fall, yet it’s been 9 days.

Totally soul destroying, we’ve (her children) read to her, played music and just talked about everything and nothing. she doesn’t respond. Hardly surprising the level of drugs. I’m note sure it helps her, but it makes us feel slightly more useful.

just how long?

I really feel for you @Witchlite but I don't think anyone can tell you how long. What you're doing for her sounds lovely though

Hi Op

Im so sorry you are going through this.

My DM’s job is end of life care and, whilst nobody can say how long, she tells me that if not eating / drinking it’s usually not long then and they will be past the pain.

Im not sure if that’s any comfort at all alongside this time of great sadness 💐

What you are doing is amazing. I know how hard it is my dear grandad didn’t do well at the end but I like to think that maybe somewhere in there he knew we were there and was comforted. She will be too xx

I feel for you so much @Witchlite . We have just been through this too. MiL lived for 8 days without food and tiny sips of water. We did as you are, talked, read, laughed and cried by her bed.
It's exhausting! I honestly thought it wasn't going to end and we were living in some surreal world, but then suddenly she died.
Nine days is such a long time to watch someone die. I hope she finds the peace she deserves soon and you are able to grieve as you need to.

When we started, there was someone with her 24 hours a day - the hospital staff are so very lovely and we trust DM with them (sounds ridiculous I know) so now we each do about 6 hour shifts.

but we’re all so exhausted- this has followed 3 years of caring for her.

Is it wicked to say I want it to end? It makes me feel so guilty. I feel sad, angry, numb and just a bit glad it’s going to end.

sorry a bit of a rant of things I can’t say in real life. Just sitting in my car in the car park, feeling a bit desperate and deciding to stay at the Premier Inn tonight.

It won’t be long . Hand in there. Love and strength xxx

We went through this over Christmas/ new year.
It was about 10 days.
We were there the day before.
It was just awful, and not the way I ever wanted to remember them.
It won't be long now.
Then be gentle with yourself

Not wicked at all. It’s a long, terrible process. I there are few people who don’t feel the same way. There is a long running thread on this board about waiting for a loved one to die.

Is she taking any fluids at the moment? Has her breathing changed at all? Have the staff given any indication?

I think with my Mum they expected her to go pretty fast as in the previous days she had several hypo, almost coma level as her pancreas had just stopped working. She wasn’t diabetic, just everything was nolonger working. Even then it took nearly 3 days. It’s not always easy to predict.

Absolutely not wicked.

Natural and valid feelings and, in all likelihood, she would feel the same way.
Does anybody really want to live like that at the end? I’d think not.

My nana is constantly telling me she’s ready to die (don’t think it’s her time just yet though). They feel it too.

Head high lovely, it won’t be much longer I think xx

“It's exhausting! I honestly thought it wasn't going to end and we were living in some surreal world, but then suddenly she died.” This is it exactly, but without the end yet.

We’ve been gradually grieving for years, but I’m sure it will still hit us all.

it’s so good to write these things down, knowing I’m not being judged ( and if I am I don’t think I know you) and others have felt the same.

so thank you.

Breathing is still chest breathing, but heavy. Water on sponges, mainly to wet mouth but some might get consumed. The staff say no one follows the same timing, that she’s comfortable and peaceful now ( she is) and it could be at any time.

i bet she will choose a time we’re not there! Stubborn is my mother’s middle name!

@Witchlite She will almost undoubtedly go when you've all left the room. My MiL did.

I felt so guilty wishing she would die, but it's not wicked, it's because you care and don't want her going through this any more.

This country desperately needs a law on assisted dying.

Book yourself into a hotel and get some rest.

I made the choice that my late OH should remain in his nursing home ... a beautiful home where he was very settled ... rather than go to hospital when he caught an infection. I did this because I wanted him to die rather than continue suffering. It was the right thing to do. There is nothing wrong with wanting someone to die when they are suffering. Do not feel bad about that.

He took a long time to die, longer than I expected, which prolonged the agony emotionally for us after such a momentous decision. He survived many days without food or water and it seemed impossible that he could continue to live. But he was being kept out of pain and unstressed, which was what mattered.
Be by her side, tell staff if you note any distress so they can deal with it, and be pleased that you are by her side and doing right by her.

For some people dying appears to be an intensely private moment. I'm sure your DM will pass soon, if she's not drinking. Sending love ❤️

Not wicked at all.

I spent a small amount of time during covid working end of life care in the community.

some ideas from some of the families I worked along side.

bringing in favourite flowers, making their favourite coffee or spraying their favourite perfume, they may still have the sense of smell? One family brought fish and chips to eat around their loved one as they loved fish and chips on a Friday.

another family had Christmas Day, singing carols with twinkly lights and small gifts to open

karaoke, nursery rhymes and all sorts of music, some played musical instruments

reading out birthday cards etc

it’s physically and emotionally draining for the family’s so i really do feel for you and I wouldn’t like to comment on how much longer op.

Sending love OP.

It's a horrible wait, and something you don't want to wish for, but you mum.as you knew her is long gone.

I hope she dies soon and you can all reach peace.

It was about 5 days for my father - fully sedated and nil by mouth. His breathing became noticeably shallower the day before he passed. We were advised by family to say our individual goodbyes that night (they had been through it with their own parents) and I told him it was ok to go, that we would look after mum (despite years of illness she never really came to terms with the fact that he was dying). I’m sure my siblings said similar. Apparently giving them the ok to go, can give them the peace and release to stop fighting. He passed away a few hours later. All the medical staff and chaplains all said that they can still hear at that stage. I thought they were just saying it to comfort us but I researched it afterwards and there is scientific evidence of brain activity at end of life like that. Don’t feel guilty about not being there - I had to pace myself. One of my siblings made a martyr of herself initially not leaving at all and eventually she realised she needed breaks 🙄

It was very similar with my lovely dad OP. The night we all decided to go home to rest, he died. I don't feel bad about that. We left nothing unsaid during his life. He knew he was loved. The nurses say it's quite common that they "wait" until they are alone.

Thank you all. I’m sitting in my room- luckily hotel is next to the hospital, have had a quick shower and ordered room service. Oh! And tears are streaming down my face, as I read these responses. Just thank you. My siblings are lovely, but don’t do, or like overt emotions. A pat on the back with “coffee?” Is about it.

Im going to cry myself out, scare the room service, eat my supper then sleep.

who’d have thought the kindness of complete strangers would help so much.

so, just thank you.

All you can do is keep her lips and mouth moist with a little lollipop sponge thing to keep her comfortable.

Very surreal - went through exactly this with both parents. Be kind to yourself, take breaks, remember to eat and drink. Don't feel you must be there all the time - we asked the hospital to call us at 7am with an update each morning. But what you're doing sounds good. Read her favourite book, play her favourite songs, make lists of things that will be useful later - whether that's how you feel, memories of her or practical things like a funeral guest list.

Not wicked at all. Quite the opposite. I am so sorry and hope your mums passing is calm and peaceful. It often happens when you’re not there.

In the last year of my mum's life I was called as 'she wouldn't last the day' 4 times. She lived with my brother.

The last time was last July - she was blue when I got there. Everyone came and visited that day. The doctor said that it was a matter of hours.

Three weeks later she was put on the syringe driver. She was not eating but would have tiny sips of water when she was roused. She was three weeks on the syringe driver. She died at about 5am when no one was with her - I had been with her eight hours a day for six weeks.

She had been diagnosed with vascular dementia in 2015. She had a strong heart and character. Those six weeks were hard and yet serene.

I’ve been there, more than once now, it is utterly exhausting. Things will change and you will feel relief, that’s normal after being on high alert for so long, and nothing to feel bad about - it’s completely understandable. Huge hugs to you x

Feeling for you and understanding.
We were told hearing is the last sense to go. We spoke to our father and sang hymns as he had a faith. We said our goodbyes each night and anything we needed to say for example if anyone wants to make peace. Keeping their mouth moist and them warm. The nurse caring for our father kept a comb in his pocket, keeping their hair tidy, his gentle way of caring. Our father died in the night and the nurse had just gone in to change him so was with him. We had agreed a phone call in the morning if he died in the night. As I said we said goodnight each time we left.
I wish you a good sleep tonight and when the time is right for her a peaceful end for your dear mother.

@Witchlite I have no words to offer comfort for you right now. Your mum is being looked after, and I only hope she has a peaceful pain free ending. Sending the biggest of hugs 🫂💐🙏❤️