So bloody exhausted waiting for someone to die 3

[StiffyByngsDogBartholomew]

Carrying on from our first two threads..
https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

My mum has started to ask if I'm her mum.

She grasps who I am when I tell her.

But I so want her to go before she forgets completely that she has a daughter.

My MIL thinks her parents are coming to get her . She only sometimes remembers that she has two sons, and she's entirely forgotten me and DD.

@Canyoudigityesyoucan sorry you're in this position, I've spent a lot of the last few weeks doing the same. It's not easy.

It’s not. You have my sympathies. Constantly analysing every breath or movement and trying not to jump ahead. It’s terrifying but also so sad.

God, how awful.

I am in a similar position. Mum asked me what she was like at school as she says she can't remember. Sometimes she does seem to know who I am though.

I was asked last week if I wanted mum to have Covid and flu jabs this year. I said yes but I think these might be the last ones we agree to her having. I need something else to take her before she reaches the point of being bedbound and unable to speak, feed herself etc.

@Choux The problem with this approach is if your Mum ended up in a care home the Flu and Covid jabs would be given in her best interests particularly if she’d consented to have them when she had capacity. Sadly healthcare is fixated on prolonging death regardless of the quality of life.

I wasn't very clear. My mum IS in a care home and the manager asked if we consented to her having them. As her next of kin it was my decision.

I have been very open with them that I want my mum to pass away there and I don't want her to have to move to a more institutionalised nursing home. And that I don't want her to reach the very end stages of dementia. Right now she still gets some enjoyment out of every day and can eat, move and toilet herself. But she is clearly deteriorating and I am not sure I will think it is in her best interests next year.

They can only give them with consent (either the person's or the person holding LPA). They don't just vaccinate the entire home!

We're still in a strange kind of no man's land where my grandmother is in end of life care, but has been for several weeks now, and after it seeming she was about to die, appears to have somewhat stabilised.

She is bed bound and can't speak any more and I don't know if she recognises me because she can't communicate. I am her next of kin and POA, and like a daughter / parent to her.

Personally, I see a decline over the last fortnight as she is mostly sleeping. I don't know what to do, as this stage goes on... has anyone else been here and has advice?

I visit but mostly sit beside her as she sleeps. I feel guilty I've taken that time away from being with my young children, or away from work. Then I'm exhausted afterwards and can't do anything. But then when I don't visit, I also feel guilty. Seems there's no escape from the guilt on this journey.

The surgery never called back about my mum's vaccinations so seem to have dodged that bullet at least.

@patchworkowl I have been in your position with my DGF and I do feel for you. It went on for a few weeks and he also slept mostly but I felt the need to be there, to the point I was so exhausted as I was working full time and then driving in heavy rush hour traffic into London to sit with him. I think he knew I was there (I hope) in his last week I was there during the day as well and I gave myself a morning off because I was so tired that was the morning he passed. Initially I was so upset I wasn't there for him, but then I realised I had no control over that and I had done my very best for him and he would have been annoyed with me for burning myself out like that.

Just be kind to yourself and do what you feel us best for all of you

@Tara336
Thanks for replying so quickly. Yes, it's the travel that's an additional tiring factor. It takes 1.5 hours to drive there, or about 2.5 hours by public transport (when DH has the car for work).

I think I've accepted I might not be there at the end. It might not be possible because of childcare, work, travel, etc.

What you said about him being annoyed you were burning yourself out rings true for me. I don't think she'd have wanted me to be this exhausted. It feels like its been going on forever, after the slower and steadier decline of the dementia years.

Sadly healthcare is fixated on prolonging death regardless of the quality of life.

…on this topic, my friend was telling me her dad has asked for a DNR to be put on his records.
I have had conversations in the past with my Mum in relation to others and she has often said that she could never understand why ill and old people are kept alive living a miserable existence and how she’d never want to be like them ….
My mum has recently had a dementia diagnosis and is becoming very frail in front of my eyes. I know without a shadow of doubt that she would hate to be in a home and wouldn’t want to be kept alive if she became seriously ill; she wouldn’t “want to be a burden”
How do I have this conversation with her 🤷🏼‍♀️ without me feeling that I am forcing the decision or,
for want of a better phrase,
want rid of her 🥺
I want what she wants
How do we make sure they are not kept alive to suffer 🥺

An official DNAR form requires a GP sign off, so that’s a good point to open the conversation. It was recommended by mums dementia consultant. DM’s GP was lovely and explained to her that if her heart stopped then any CPR would not work because she is so frail. But emergency workers would be obliged to try because that’s their rules, so to avoid distress and loss of dignity we could do this form, which communicates her wishes. Mum agreed. Then once you’ve broached the “what if my heart stopped” scenario, you can ask what she’d want in other situations. Sadly DM is now beyond the point of having a further meaningful conversation but DB and I are aligned which helps enormously.

I had a separate chat with the GP to ask about other expression of wishes forms and she recommended just taking things as they come - that surgery is very pragmatic and makes decisions/recommendations on whether to treat illnesses aggressively or palliatively on an individual basis. I’m happy that we won’t be railroaded into treatment and we could say just keep her comfortable and let nature take its course, without being pressured or made to feel like we want her to die.

It can help to talk through what's actually involved. Mine had no idea how
brutal CPR is and that it often doesn't work, can result in broken ribs and bruising even when it does. It's not like how it's portrayed in TV medical dramas! That helped her decide it wasn't something she wanted.

Just checking in with fellow travellers on this sad journey to say my dad passed. He finally made the move from assessment bed to nursing home, where he seemed comfortable but he didn't really know who we were, why he was there, and, like other people up thread have said, he kept thinking I was his mum, or his sister, come to pick him up. It was a very emotional time, but only lasted about two weeks - he caught a respiratory infection and went quickly downhill.

My mum has dementia, and keeps forgetting what has happened. She seems to think he is still in the nursing home. We play along, because when she was first told she went into shock, even forgetting her own name. Now we are planning a small funeral and then a little gathering at her house - there are not many people to invite, they outlived or fell out with most of their friends and family - but I am wondering how mum will cope with the harsh reality and finality of that.

Has anyone else been in a similar situation - how do people with dementia cope with grief, if they can't really remember there has been a death? Do you force them to confront the reality, or let them live with comfort of forgetting? I am struggling with the ethics of it. My dad never wanted any funeral at all, but other family members are adamant there needs to be a send off. Any one else dealt with this?

@rosemarypetticoat I'm so sorry for your loss, but at last he's at peace.

And @rosemarypetticoat - my experience with dementia patients tells me that it's imperative to keep them calm and happy, so if that includes resurrecting people who are, in fact, dead - then that is what you do. What you have to do.

Just remember how devastated your mother was when she learned of your father's death. If you keep correcting her belief that he's still alive, every single time you tell her that he's dead will cause that devastation again. Over and over again. That would be unbearable for her.

@rosemarypetticoat sorry for your loss. MIL was adamant she didn’t want a funeral so DH arranged a direct cremation and had to fob off her extensive friend network. I think he found it hard not to have a funeral but he said he couldn’t go through with it knowing he was going against her last wishes. I tend towards the view that funerals are for the living to say goodbye, so it’s very hard in those circumstances to come up with a solution that works for everyone.

DM has forgotten occasionally that Dad is dead. She’s asked where he is or when he’ll be home and I’ve managed to do a vague “he’s out/he’s fine” using the phrases he used to use and that’s seemed to satisfy her. Tbh I’ve found it harder when she’s asked if I’m going to see her mum (she died 25 years ago) or various uncles and aunties of hers that are long gone. I’m no good at lying, especially to her!

@rosemarypetticoat so sorry for your loss.

I have been through similar with my mum. My dad died about 18 months ago and they were living together at the time but mum had worsening dementia. On the day he died we both saw his body and mum was really upset but then quickly forgot. I stayed with her for two weeks as we waited for a care home place to come up and she must have asked me 10 times a day 'Where is your dad?'. At first I was honest with her but every time I told her he died she was upset to varying degrees. I realised it was better to just lie and say he had popped out.

I was planning to take mum to dad's funeral because wives go to their loved ones funerals but the care home manager sat me down and said gently said she didn't think it was a good idea. She asked me what I thought my mum would get out of going to the funeral given she couldn't remember he had actually died. And asked what would happen if she suddenly asked mid service who had died and got upset. Would I take her outside and miss my dad's funeral myself? My brother and I decided not to take her to the funeral.

18 months later she still occasionally asks me where dad is. I just smile and say 'he's around somewhere' and distract her with a biscuit. It's kinder for her.

One other detail. The day after the funeral we had a family lunch with all the relatives who had attended the funeral and mum came to that. She enjoyed the day out and seeing everyone (she had no idea who anyone was other than me and possibly my brother) with none of the sad emotions of an actual funeral.

@funnelfan @Choux @TheShellBeach
Thank you so much for your lovely and thoughtful words of wisdom, and so sorry they come as a result of also going through this difficult experience. Your advice actually fits with where my feelings lie, that given he never wanted a funeral and my mum can't even remember he's dead, it could be an unnecessary cruelty.

At the moment, it feels like we are putting on a performance for my sister, so she can say we gave him a good send-off - she's very worried about what people will think if we don't do this. But having done the bulk of the caring by myself, with my own family bearing that sacrifice, I am done caring what other people think and we need to do what's kind and appropriate given the very difficult circumstances.

I really like your idea @Choux about a family lunch the next day, which doesn't carry the same emotional weight and performative aspect of an actual funeral and wake. I think it would be good for mum, for all of us, even my sister.

@rosemarypetticoat So sorry to hear of the loss of your Dad and hope you’re getting support at this difficult time.

I think you’ll have to use distraction techniques with your Mum and excuses about why your Dad isn’t there. Sadly telling her he’s died is never going to sink in and will simply re traumatise her over and over again.

With regards to your Dad’s funeral I’d be inclined to go with what he wanted. It sounds like if you did the lions share of the caring you’ll be doing all the organising too. I wouldn’t gave your Mum present if you have a service. I saw this happen with my husband’s aunt who had dementia. She was taken to her husband’s funeral from a nursing home and just looked bewildered and confused.

My late Mum had said she wanted a direct cremation which didn’t happen as my step dad wanted a funeral. It was awful as the only family there were my step dad, and my husband and I. A few neighbours who hadn’t really been that close to Mum came along and that was it. Personally I gained no comfort from the service whatsoever and still feel stressed from the whole event.

I’d do something that feels meaningful to you and respects your Dad’s wishes. I’d avoid being swayed by other people’s opinions particularly as they probably won’t be there for you when you need them in the months ahead.

@PatchworkOwl Yes, unfortunately. My Dad's had a few possible EOL situations and with each of them he's gotten weaker (he's not unable to speak, move and just sleeps a lot). The last one was more than two years ago and he's still blimmin' alive!

I hope things don't drag out as much for you but it can be a very long haul thing. You can't pause your kids growing up or your rent/mortgage payments in the meantime so try not to feel bad.

It would have been a LOT easier on everyone if he'd died during the last episode but the hospital, with my Mum's permission, stuffed him full of antibiotics to keep him going. I remember actually feeling upset when I got the message saying he was more stable because it meant having to go through it all again at a later point.