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

No it’s not until the 19th. At least then we’ll be able to get away for a few days have a change of scenery.

Thank you all for your honest, heart aching posts, I’m so sorry you are all going through the same situation as me and my DH.

I’m watching mum in law slowly, oh so slowly, pass away. DH has LPA and knows what her wishes are. He’s been with her every step of the way, but it’s getting so hard now that the days are going on and on.

We got the call on Thursday, and have been in the hospital nearly continuously ever since.
When we’re not at the hospital we’re at home waiting for the call to come back.

When she could talk, she said she didn’t want treatment, she wants to go to sleep, and not wake up. She had a stroke 3 weeks ago and lost use of her limbs. She’s 96 and Drs said she won’t recover from the stroke. Before that, she was happily living in her own home!

Her mind is still totally with it, and she’s definitely hearing and understanding everything. Until she lost her ability to speak we had some meaningful, albeit slow, conversations.

The hospital have been great, apart from the nursing assistants who insist on bringing in food, even though she refuses it, and can’t swallow anyway!! Yesterday when we weren’t there they tried to give her potatoes! The nurses keep telling them not to do, this, but when her nurse isn’t there they try again. They tell us they have to do this! This act on its own makes us feel so bad and question maybe she can get better? But we know she can’t, and this charade every mealtime is so unkind.

We know she just wants to go, why does the body not have an off switch?

Sorry you're going through it as well @AurumTroyoz - not quite the same but when my DF died the doctors insisted on a final round of antibiotics to try to clear his pneumonia when he was 89, had a disabling neurological condition, had said he wanted to die for a while, and was practically skeletal. I think it probably prolonged his life by an extra week when we were all going backwards and forwards to the hospital the same. Can you speak to the sister or ward manager about the HCAs and feeding? For my DF, they'd bring stuff and leave it there but then just take it away again with no pressure.

@AurumTroyoz that sounds very distressing for you and your husband.

I'm sorry.

A memory has just resurfaced. I used to do a bit of care work and one lady was ( to me) a bit of a local character. Always nicely dressed and out and about.
She even ran a community group when she was well into her 80's. I remember being outraged when she had a really rattly chest and I had to phone her daughter. Daughter got there with wet hair as she'd been swimming.

God, I was clueless. Daughter was just trying to look after herself in a very difficult situation.

Sorry for folks going through a rough time

Really sorry about the loss of your Mum @Metoo15. I've been away for a few days and missed your post. Hope your Mum's death was peaceful and that you're being supported now.

So it’s been 4 days with no food and just the occasional teaspoon of water. She’s had strokes, and has got pneumonia but DMiL is still breathing.

what are we meant to do? Should we stay by her side all the time, is it okay to go home? We’ve come and gone all weekend, mostly staying by her bed. But now surely the end is near

What is the right thing to do? We’re exhausted.

@AurumTroyoz it's apparently not unusual for people to die when their loved ones aren't there. There's nothing you can do if this happens. You've done your best, get some sleep.

Hope you're doing OK @Metoo15

Question - how does everyone else manage taking their kids to see their sick relatives? My Dad has had several near EOL events but has been hanging on in there for 2 years since the last one.

I don't think he really recognises us and the last time I went to see him I ended up having a mental health episode because it was quite distressing - he seemed very unsettled.

My son is 12 and has autism, so processing emotions are sometimes more difficult for him. He's not that keen on visiting DF but says he'd feel bad if he hadn't seen him for ages then he died. Its been months since he went.

I don't want to force DS into doing something I find really hard myself but I don't want him to regret not going when he's older.

How far away are you @AurumTroyoz - could you get to the hospital quickly if you were called? Obviously, may not be notice. we came and went when DF was dying, and the nurses said they thought we had a good approach. Actually, we weren't there when he died, the hospital called but by the time we were there, he was already dead, and in retrospect I do wish a bit that I'd stayed on that night, but I know I went home for very good reasons (same as you, exhaustion) and I feel okay about it. I don't think he actually woke up between me last seeing him and him dying anyway.

@HoraceGoesBonkers my DD was 16 when my DF died, and she didn't want to see him, which was fine with me. She doesn't seem to regret this, but if she had, I would've emphasised all the times that they had together before he was taken into hospital. I think that's especially the case if he's not recognising people anyway. The other option would just be to have a very very quick visit. DD's cousin died when she was perhaps about eight or nine and she wanted to go to the funeral but in reality she couldn't cope with her GPs being upset, so I just took her straight out of the service.

My DM is now in one of those halfway house type wards where you can go either way. She seems to be off oxygen, but she's very frail, no idea how she's going to cope at home if they discharge her, I need to call the doctor later today as the nurses last night couldn't tell me anything. DD and I are supposed to be going on holiday next week, unlikely we will get travel insurance paid if we cancel because it's an ongoing condition for my DM but feels like the holiday is hanging in the balance a little bit, and difficult to look forward to. Again!

@SierraSapphire
We're about 30 minutes away but more of there is traffic.
DH spent all night with her. She's still holding on; what for I just cannot understand.
I know people often die when relatives leave the room, we're hoping that might be the case here. We've done everything we can to support her through the transition. It seems she's not ready to go, although when she was still verbal she told us she did.
DH is comfortable with not being there now. She's being looked after well and there is nothing more he can do.

Me too.
And TBH, even before she needed residential care, which we knew was soon inevitable (she was 89 when it happened) if I could have given her a nice dinner and a glass or two of sherry, tucked her up in bed and kissed her goodnight, knowing she’d never wake up again, I’d have done it.

As it was, she went on to 97 - 8 years in the care home, for the last few doubly incontinent, no clue about anything, not knowing any of her family.

And I have absolutely no doubt that her former self would only have been grateful.

I also support assisted dying. I've watch too many relatives suffer the indignity of a life limiting illness that left them unable to do any for themselves for years. We should all be able to choose whether we want to carry on or not.

I dare say I’ve said it before, but what we CAN all do, is to add a paragraph to our Health and Welfare Power of Attorney.

Mine and dh’s go roughly, ‘If I should develop dementia, or any other condition where I am unable both to care for myself, and speak - with full mental capacity - for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

It’s better than nothing.

I think anyone who goes through this supports assisted dying. I really want to be able to put something in place for myself should I end up with dementia.

Had another trip to see Dad. He was slumped in his chair and mostly asleep, and I'm not sure if he knew who we were. The last time he seemed to recognise me was two years ago! Can't believe this has gone on for so long.

@HoraceGoesBonkers the last time I took my DC (aged 12 and 14) to see my mum, she was very agitated and crying out (though unable to form words). They found this distressing, as did I, so I haven't taken them again and they haven't asked to go. TBH, she's been seriously unwell and in nursing care ever since my older DC was a baby, so they have no prior relationship from when she was well. So it matters less to them, I think.

13 years she's been in that care home. Hasn't known me for around 10 of those years, unable to eat solid food for about the same length of time, doubly incontinent and unable to speak for about 6 years. All self-funded. Oh well.

My heart goes out to you, and @moggerhanger (and anyone else is this horrific situation).
My MiL is currently defying medical science. She's been 6 days without food, and only water to wet her mouth. She's also got pneumonia. But she's still with us.

@AllEars112232 oh no, I'm sorry to hear about your MIL. That sounds truly awful. Big virtual hugs to you.

@moggerhanger This sounds awful and I really feel for you. Dealing with my Mum’s dementia was awful but I only had four years of it from diagnosis and I wasn’t caring for her directly.

No it isn’t just a party and I can imagine how much leg work you’ll have to do. I’d refuse to get involved as it does seem a pointless charade if your Dad doesn’t have a clue about what’s happening.

@AgitatedGoose You've hit the nail on the head. I'm not doing it again. At one of the parties she was trying to get my BIL to manhandle DF out his wheelchair into what was his old chair at home. DF needs a hoist to get moved between chairs and his bed, none of us are trained on how to use it and I don't think we had one anyway! BIL refused. The level of fuss and stress is really difficult.

@AllEars112232 that sounds awful. I hope she is at peace soon.

DM has started smearing her poo. She screams every day. She’s loosing weight and eating less, the GP has prescribed yet more build up milkshakes. I think it’s her body finally saying “fuck this” and deciding not to continue. She’s not happy, I’m depressed the only people invested in keeping her alive as long as possible didn’t even know her 9 months ago and are getting paid a lot of money to do so.

@SinisterBumFacedCat Eating less or refusing food is definitely a sign a person’s body is shutting down. I really don’t know why GPs insist on prescribing supplements other than it all seems about prolonging a miserable existence for as long as possible. Maybe a phone call or letter to the GP objecting to this might help. Do you have POA for health and welfare? I absolutely hated seeing my Mum being given foods she previously disliked or care staff tapping the corner of her mouth ti get a reflex so they could push food in.

SinisterBFC, do you have a Respect form in place for your mum? I'm hoping this is the sort of situation that can be avoided by one, so I presume not. I hadn't heard of it so am pleased the care home manager gently asked us about it when we asked about setting up DNARs. I think it's something for people to think about.