So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

@AgitatedGoose my mum had chosen herself not to eat anymore and was admitted to hospice. When I arrived one morning there was a nutrition shake thing on her table. I spoke with the nurses to explain that it was her decision, and they and the dr agreed she wouldn’t be offered any more unless she asked. I would speak with the medical and share your concerns.

i was also concerned about the ‘two weeks’ that people are usually expected to be in hospice, and what happened at the end of that (especially if she was being fed!), they reassured me that she wouldn’t be discharged - it sounds a lot like your dad is in a similar condition to her, but I was terrified of her being sent home. It was more that they would assess condition after the two weeks and ensure hospice was still the right place for her, but if she had been given a bed now then it would be unlikely for that to change.

It’s a scary time. I wanted my mums pain to end, but really hated myself for this because it felt like i wanted her to die. It’s hard to have those feelings, but they’re completely normal. Sending you and your dad lots of love.

Thank you @Guineapiggiesmalls and @PermanentTemporary for your replies. This really is such a roller coaster. Yesterday I thought Dad couldn’t last much longer as he was making awful noises, his involuntary movements were worse and there was an awful rattle in his chest. Today he seems much more peaceful which I’m pleased about as it was so distressing seeing him like that. I only hope the hospice doesn’t push food or supplements. I’m also finding it difficult to know what to do about work as this could potentially go on for weeks. I’ve reduced my hours and condensed everything into three days but I’m a long drive away if I go home. Based on how Dad was yesterday I told my manager I wouldn’t be in next week but with how he was today I’d go back. I really can’t afford the reduced hours and don’t really want to be off sick either.

The Hospice at Home nurse came to see me yesterday. She was extremely kind, and we had a good discussion.

It seems Mum could go on for some time, or could die in her sleep tonight. There is absolutely no way of knowing or trying to guess.

The nurse acknowledged that it wasn't so much death that was so terrible for everyone, it was knowing that death was coming but not when and having to watch loved ones deterioirate and suffer when all we want for them is for them to be at peace.

I've been poised for it to happen which I think isn't a good state to be in because my own body is under a lot of stress. I think about our beloved pets and when they are dying we can let them go quickly without further suffering.

It feels so cruel having to wait for the body to decide when it's done. I think my mum is gradually accepting it's the end now, so perhaps that acceptance will help her body let go.

I've been talking to her about holidays we've been on, and trips we've made, and she can listen to me and respond for a few minutes, then she becomes too tired and only wants to sleep.

Every day I pray she sleeps her last, long sleep.

It's a long road @Goldenspraint. My mum slept through my visit today. That's the second time she's done that this year. It starts up my deep hope that we might be getting towards the end.

It's over two years since my first peaceful 'deathbed vigil' overnight with her and she has rallied every time, but always to less and less of a life. It quite frankly does my head in. I hope you have more help and support in the hours and days ahead.

Oh wow, that's awful for you - and her.

Gosh, my mum started palliative care in October, and whilst she was eating and drinking less, sleeping more, and losing interest in the world, it wasn't until she was suddenly in a lot of pain a couple of weeks ago and stopped eating and drinking that the transitional phase really ramped up.

For all of us on this thread I hope and pray for swiftness.

@AgitatedGoose Do you know in your gut what your preferred option is - without thinking about consequences or the potential problems?

I would do whatever that is if it were me.

I'm self employed so luckier I suppose. I'm trying to finish off some work, which is hard as my concentration is shot, and have told clients I'll be back in April.

@GoldenSpraint I’m pleased you were able to have a helpful conversation with the hospice nurse and I agree knowing a loved one is going to die but not knowing when is incredibly difficult.
I’ve decided not to return to work as I don’t think I’d be much use and being 3-4 hours drive away when my Dad has no one else is too awful to imagine.
I’ve self certified for this week and then plan to register as a temporary patient in Dad’s area. I don’t have a GP where I live ( complicated story) so I hope this won’t be a barrier. Wishing you strength with the long vigil with your Mum. x

It's so difficult isn't it @AgitatedGoose to know what to do, and not be constantly second guessing what the best thing is.

I'm pleased you've done what feels right for you. 😊

Here, a nurse from the surgery has just been and she thinks that going by Mum's output her kidneys are shutting down, and other organs will follow. She had a lady recently who died after 24 days of not eating or drinking, but the lady was occasionally nibbling tiny bits of chocolate.

Since my mum has eaten nothing at all for a couple of weeks and drunk nothing at all for almost the same, she feels Mum will leave us much sooner than that.

My mum has her own nurse from the surgery who's coming to see Mum on her way home. She also saw Mum on Friday so it'll be clearer to her how much of a deterioration there's been.

We've had some lovely weather and the birds have started singing, and it all feels so right now.

I'm sleeping okay, and have spent a fortune at my local farm shop on homemade ready meals and yummy handmade pies and soup. I'm not great at self care so at least if I'm living off quick stuff, it's nutritious and good quality!

Hugs to everyone here 🤗 ❤️ 🙏

My grandmother (102) passed away peacefully in her own home last week. It was a mercy. She was distressed for one morning, nurse gave her antisickness and something for anxiety, my mother is unsure what the name of it was, and she slept then passe away an hour later. It was an absolute year of hell caring for her but it's soon forgotten I'm sure.

Sending love to you all.

My own grandmother died suddenly 24 years ago in her nursing home after being 'settled down' in a private room after being agitated and distressed, your post has made me wonder @HellsBells67. That was just before the Shipman era reforms, and doctors and nurses may have been a little less cautious about prescribing to those with severe dementia and the terminally ill.

Sometimes a powerful drug or combination of drugs can take a very old sick person over the edge very quickly and I don't think it's a bad thing really. Sorry for your loss but also understand that it's a mercy.

Mum's nurse has just been and agrees there's been a big deterioration since Friday and that it won't be long now.

I told our neighbour it wouldn't be long (I didn't want her to look out the window and be shocked if she saw the bed and other items being taken away), and she said she felt guilty for not visiting mum since she started receiving palliative care in September.

Wasn't sure what to say to that. It really hurt that she's stayed away. So I said something non commital, and left her with her thoughts.

@AInightingale yes it did make me think too, although I didn't mention it to mum as it would only worry her. Probably midazolam as there was a box of just in case meds in the house it seems. I think it was a kindness although I wish they had warned mum it could be quick as she was told she was sleeping peacefully, went out for something and missed her passing. But we can't have it all I guess.

Ahh @GoldenSpraint, I feel for you, I think that I’m in a similar position. I’ve been nursing my DM in her own home for the last 18 months (terminal cancer plus very elderly) and after quite a good week and eating and drinking well, she was suddenly very ill in the early hours and the district nurse thinks it might be a matter of hours. I hope so, for her sake but it’s very hard. She’s dosed up on morphine and midazolam and appears peaceful so I’m just sitting with her
It does hurt when people who profess to be friends never pop round, mind you, there are also a couple of relatives who haven’t shown their faces, probably in case they might have to help somehow! I’m determined not to be bitter though, let it be on their own consciences

@cupofteaneeded Mmm, let's not mention absent relatives who live just down the road and haven't seen Mum for years!

I hope your mum has a good night and gets some peace now. Xx

The night nurse has just been and administered Midazolam.

Mum was asking for her mum and getting a bit worked up. She's finding it difficult to sleep, so hopefully this will give her a restful night.

Mum's carers came and I had a good sob. I didn't want her disturbed so we chatted in the kitchen and they gave me big hugs 🤗

Could be a long night for both of us @GoldenSpraint , I hope that you and your Mum get some rest too xx I’ve cried so much today that I can barely see but only when I’m out of her bedroom. I think that I’ll be fine when it actually happens, it’s the anticipatory grief plus seeing other people upset

@GoldenSpraint Wishing you and your Mum a peaceful night. I think it’s really hurtful when family members of friends don’t phone or visit. My Dad has some amazing neighbours he saw regularly and they keep checking in with me but Dad’s extended family have been awful.

Wishing peace at this difficult time. X

It is hurtful, Goose, my mum's a beautiful kind and generous person, and it hurts a lot. The only time they got in touch was when their cat sitter fell through and they wanted someone to stay at their house when they went away.

I'm heading to bed now, I feel Mum might have hours or a day left, and we've had hugs and kisses earlier. She's fast asleep looking so peaceful and I feel at ease hoping she might go in her sleep. She deserves something so calm and restful. ❤️

Night everyone, hope everyone's vigils are calm, and your loved ones have peaceful nights. 🙏🤗❤️

Sorry to hear about your grandmother @HellsBells67.

Thinking of you both @GoldenSpraint and @Cupofteaneeded.

Another day dawns. Mum is still here. I thought she might go last night. It's imminent and I think it's very very unlikely for her to be here in March. It'll be a blessing for her when she glides away. ❤️

Carers she may not see again have been saying gentle and loving farewells which has been wonderful. 🌷

Us too, @GoldenSpraint how are you feeling? The house is full, family all paying visits, plus carers and district nurses. I don’t think that the kettle has had chance to get cold! Whilst you don’t wish the inevitable to happen, it’s so difficult not knowing when. One nurse said “hours”, another thought that it could be a few days yet

It's just me and Mum here. Very quiet as we're quiet people, and just as Mum would want. 😊

Tonight there will be a nurse from the hospice sitting with Mum. I had to sleep last night and managed three hours, so a sitter will be lovely, so Mum won't be alone, and she can wake me if necessary.

Mum looked at me so intently earlier for ages without blinking. Like she was drinking me up for the last time. And not wanting to go and never see me again.

I've spent most of today sobbing. I feel wracked.

I've sorted a beautiful outfit she loved for her final journey. And am gathering some items to go with her.

I can't believe me and Mum are almost at an end. We're so incredibly close, best friends, have spent so much time together, done so much until the terrible dementia disease came.

I feel like I'm having my heart ripped out.

your love for your mum shines through your posts @GoldenSpraint , and in hope it sustains you through this vigil.

@GoldenSpraint I'm so sorry, it's heartbreaking isn't it. My Mom and I have also been close so I know how you feel. My Dad died 30+ years ago so we've involved her in everything we've done. She helped so much when my children were young, I'm glad that I've been able to repay her in some way by looking after her since cancer diagnosis

Can I join the thread please?
Just returned from a 500-mile round trip to visit my mum in her nursing home. So much of what others have said resonates with me completely. My mum is completely bed-bound and barely able to speak or hear after a series of strokes. I have spent probably the last 12 or 13 years worried about first my dad, who died six years ago, then her, as she has become increasingly frail, and the constant stress of wondering when my next trip will be, what the next phone call will bring, how to arrange time off work, what will have to be cancelled, etc., does take its toll.
She was awake on Sunday, slept through my visit yesterday, and was awake intermittently today. Her friends do visit too, but pester the nurses to force-feed her, try to wake her up, move her around etc.. Fortunately it is agreed that this is not the right thing to do at this stage.
It feels better to type all this out…!