So bloody exhausted waiting for someone to die 2

Hurrah!!!! Enjoy it!

@SeriouslyAgain and @AgitatedGoose how terrible to have to witness that. So dehumanising.
@PermanentTemporary do you see situations like this frequently in your practice?
@AInightingale I'm smiling at your dad's sweets.

My mum kept a scrapbook with a square of cloth from all her clothes. A more compact way of keeping the memories.

I can confirm that our nursing home took the Letter of Wishes quite seriously. We did override his desire to not be on the ground floor, because he wouldn’t have had free access to the lounges there - it wasn’t that he wanted to sit in them, but he wanted to walk along to them and back, and he also liked to walk along and chat to the manager. But everything else is adhered to.

We were very lucky in my Mum's care home that when she started refusing food they didn't go ott with trying to get her to eat.

They recorded everything she ate & mentioned whether she ate 'well' or not but I felt they were listening to us when we said it's her body starting to shut down & they didn't force her.

And about giving food in these circumstances: why?

Again, a best interests meeting may help thrash things out.

Too often things get done a certain way to save the carers' or families feelings. That may align with the person's best interests or it may not.

Firstly thickener.

There is no evidence of benefit to thickener, and significant evidence of harm from it.

If you challenge its use, you will find that the rationale slips away and changes. It will be said that it prevents aspiration (you can't tell that but it probably won't), and that it is 'safer' (it isn't at all, it can often be less safe, but who cares about 'safety' in this context?)

If you challenge those things, the next will be that it's more comfortable. That is sometimes (not always) true in terms of coughing, but there are often other ways round that, and people with dementia won't remember coughing or dread it or worry about it. It is much less comfortable in terms of how fluid feels in the mouth and how long it sits in the throat.

If you challenge that they will probably say it's the speech therapist's recommendations, which they must follow. True that it's the recommendations (though bear in mind that it's still the patient's choice, or the attorney's choice for them, or a decision in their best interests. One profession's advice is only one piece of advice).

If you go back to the speech therapist, talk about what they've seen and what makes them recommend these things. I hope you will be able to have a sensible discussion and get the recommendations changed. If not, ask for a best interests meeting including the GP.

Examples of possible alternative things a speech therapist might say: normal fluid at risk of aspiration, coughing and death; normal fluid from a teaspoon only at risk; water only at risk.

If anyone mentions 'feeding at risk' which they should, it's a good thing, ask them to write down what risks they are talking about. You cannot agree to at-risk feeding without knowing what risks you are accepting.

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.

Thank you so much. Any advice would be helpful.

@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.

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 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.

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.

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.

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.

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.

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 🤣

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.

Second what TheShellBeach said!

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

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.

@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.

@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.