So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

Sorry for what everyone's going through, and best wishes to you popularinthe80s - it must be such a strange and sad time.

This. And the drug companies too.

I think sometimes the carers get very attached to the residents as they are and don’t see what we do, they don’t have the memories of how the person was before to reference, they’ve no idea that most of the personat laity that made them has long gone. I find myself getting attached to some of the other residents at Mums home, if they aren’t floating around the communal areas like normal I worry something has happened to them, I can imagine carers get really attached. I remember at my Dads home another resident who had expressed wishes not to be fed when they started choking, the family agreed but the care home overruled because “they couldn’t bare to see him starving to death”. If anyone prolongs my suffering like this they will get haunted!
I also think money plays a big factor. And fucking Shipman. That guy has caused immeasurable suffering.

That's so bad, it shouldn't be down to the care home to overrule the patient/doctor/family wishes or the patients best interests 😠

Yes. The nurses' feelings got presented to us as a reason to feed Mum too. I don't doubt that it's a difficult situation to manage but the nurses' emotions shouldn't override DMs best interests. But I sometimes think they don't even see what they are doing to keep people alive because of course it is their job. It makes me wonder about their understanding of what they are doing sometimes.

@StiffyByngsDogBartholomew forgot to say - great news about the legacy! Though I can imagine it's a bit disappointing to not get any yourself (pay off the mortgage etc).

Sorry - I'm catching up gradually, hence the disjointed posts!

Looking back at FB memories, in 2015 I posted this: "Went to see my mum in the care home today. (For those who don't know, she has Alzheimer's.) Not doing great - she's beginning to forget that when eating, she needs to swallow. So she's aspirating food which is causing raging chest infections. She no longer recognises me, which is a change from when I saw her just before Xmas. She can't hold herself upright in her chair either. If I ever get that diagnosis, I'll throw a huge party for everyone I've ever met, and then I'll get on the plane to Switzerland."

I would not have expected that nine years on, she'd still be (barely) alive. A testament to wonderful care, of course, but at what cost?

Nine years! That’s what, over ten percent of her life? And a bigger proportion of yours.

DMs vital organs keep her going too, and while she isn’t as bad as your mum I just don’t see where the end is going to come. I dread the idea of her being less and less dignified due to her dementia.

omg @moggerhanger the idea that my mother will live in that state for nine years - I'm sorry but that haunts me. If you don't mind me asking, what is the timeline of her Alzheimer's (diagnosis, progress etc)? I know everyone is different and I should stop googling stages of Alzheimer's as it gets me nowhere.

@PermanentTemporary and @SeriouslyAgain - am I right in thinking that your mothers have some sort of living will/advanced directive/ReSPECT form? Can I ask which one or template you used and if you have any advice as to what the most important questions are.

My mother's consultant suggested that she sort out her wishes for care now. I spoke to her about it a few weeks later. I couched it very much as, "I wish we'd done this earlier for Dad, so would you like to do this now that you're healthy and well". Which she very much agreed with, which was interesting that she sees herself in that way.

I said I'd come back to her with the right questions but I'm struggling to know what the best way of doing this. We ran into issues that my dad's ReSPECT form wasn't detailed enough and it was only with the help of a sensible GP that he avoided going into hospital the last time.

Gah, I find is so awkward, I really hate it. I wish it were more normalised.

@Valleyofthedollymix
There's a 'Letter of wishes' which the solicitor drafted at the meeting where we also sorted Power of Attorney for Health and Welfare.
It's not in any particular format, just a list of paragraphs, saying (possibly quite unhelpful!!) things like 'I want to stay in my own home irrespective of cost, but if I have to move into a home I want an ensuite room' 🙄😂.
But other bits have been useful: I can prove that I'm following her wishes by refusing to let her be taken into hospital. + if there was any debate ever over tube-feeding, I've got that covered.
She's also stated that at all points she was quality over quantity of life, but that doesn't really help in this situation where she's taking a very long time dying without anything 'acute' wrong.

@SeriouslyAgain thank you. I'm still mechanically putting my mum's clean clothes back into her chest of drawers, because she will need them, won't she?
Reading everyone's experiences- I'm going to share an epiphany that I couldn't share Outside. I've cared for my mum since last May. That felt hard enough. But my poor little mum got the Golden Ticket. Fast growing terminal cancer, tick. Fast tracked CHC funding, tick. Cared for in her own home, with 24/7 access to a palliative care team, tick. Full capacity up until the last awful week, tick.
It has broken me and I can't currently imagine how I will go on without her. But of all the possible routes to the end, she/we had the easiest ride.
It's wrong, isn't it? It's not fair on those who have different diagnoses and different circumstances. I feel angry on your behalf, whilst deeply grateful for my mum's journey.

Oh@popularinthe80s please don't feel guilty. Everyone on this thread has a different experience. They are equally valid.

I remember putting my mum's clothes into bags and taking a few of her blouses for myself, because they were the right size.

I found that I couldn't wear them.

You're so kind, @TheShellBeach .
I'm glad that I'm not the only one about the clothes.

Second what TheShellBeach said!

Another one agreeing with Shellbeach. You cared for your mum during her last days, which is a hard, hard thing to do whether it lasts weeks months or years. There is absolutely no need to feel guilty. But I imagine guilt is just a manifestation of all the other emotions you will feel during this time so don’t worry about it, let the waves come and go and you’ll come out the other side when you’re ready.

I’m just sorting through mums clothes, she’s always been much smaller than me, but she’s adamant I take some and wear them. I know I won’t be able to but I’m taking them anyway 🤣

My Mum loved clothes and had some beautiful things. DD wears a couple of her blouses. Six years after she died, I have still not cleared out her wardrobe completely. She lived with us after my Dad died, so there is no timeline on getting her stuff sorted, until we move! A blessing and a curse.

My mum kept a little pink skirt suit that my granny wore on special occasions. It's the tiniest thing, as was she (less that 5' tall) and will never be worn again. It's even got her hanky and fishermen's friends in the pocket still. She died 30 years ago. But when mum is gone, I will keep it just as she did before me. Clothes are a powerful token of a person, so many memories attached, especially to special occasion clothes,

Hmmm.

I'd like the opportunity to have some of my Mum's clothes (which are to be split 50/50 between me & my sibling, along with her other possessions, if we go by what the will says), however, my StepF is refusing access to them (plus her jewellery 🫤).

Not sure how to get round that, tbh. He's not a beneficiary either, what do we do there?

I did see some nice memory bears made from clothes & they looked lovely.

Thank you, everyone. You're so kind. I feel all blurry around the edges - I'm not sure what is me and what is grief.
@Metoo15 and @ajandjjmum , you keep
@StiffyByngsDogBartholomewthose clothes. They are part of your mum.
@StiffyByngsDogBartholomew , that little pink suit sounds wonderful. Coincidentally my mum kept her glorious bubblegum pink dress and matching coat from her wedding (a second marriage, so white would have been considered unseemly). I could barely fit an arm in it, but I'm keeping it. I can feel her joy in it.

It’s beyond tragic isn’t it. My Mum is fed puréed food (slop) and all fluids have this disgusting thickener put in them. I know pre dementia my Mum wouldn’t have wanted to live like this and she used to talk about wanting to die when she was first diagnosed. It sounds really awful but everyday I hope for the final phone call which of course never comes.

@AgitatedGoose It doesn't sound awful to me.
One of the many things about this that makes me so sad, is that I won't be sad when she dies. I feel like she deserves to be grieved, but to be honest, I'll simply be relieved and I will always wish that it had happened years ago. That seems dreadful to me.

My dad barged me for taking sweets to church on Sundays as a child, which was the only thing that got me through the interminable sermons. When I cleared his suits when he died, the pockets of his Sunday suit were flaming stuffed with sweets!

@AgitatedGoose @SeriouslyAgain everything you write about makes me so angry. If you want to fight any of this I'm happy to give some general info (I'm a speech therapist who's worked with older adults for a long time). But sometimes the fight is just too much, or one more fight is one too many.

Thank you so much. Any advice would be helpful.

Thank you Permanent.
Everyone on this thread is so kind. I don't think there's anything that can be done but just being able to vent and have people being kind instead of horrified is enough in itself.