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

@eggplant16 I believe that there was a legal case about this (can you tell I've been googling?) A family in Canada challenged the persistent feeding of their relative, saying that it was simply reflex that was making her open her mouth. Ultimately the court decided that food taken by mouth "normally" couldn't be withdrawn, so hard cheese. (Though tube feeding can be.)

It's mad that tube feeding can be withdrawn but oral feeding (by force IMO) cannot.

There ought to be a way to get the doctors on board with not feeding a dying, reluctant person. It's only done to make the nurses feel better.

It cannot possibly be claimed that it's in the best interests of the unfortunate patient.

About ten years ago I nursed a 96 year old lady at home, who had severe dementia. Despite the fact that she could barely move, and screamed blue murder when she was touched and was doubly incontinent, some of the people who were caring for her insisted on feeding her and giving her fluids. Also, whenever she got an infection, they demanded antibiotics from the GP. She had a DNR but it did not clarify withholding supportive measures such as antibiotics.

This lady was very, very aggressive, and hit, kicked, punched and spat at all of us.
It was an utter shitshow.

@moggerhanger I'd be screaming at the care home staff. It's absolutely infuriating when they insist on essentially force feeding someone. If my Mum hadn't died when she did my next step was to insist that they stopped this kind of feeding and giving her the covid boosters and flu vaccine.
Enjoy your glass of wine.

Stiffy.i know it’s extremely difficult but…your parents will suck the life out of you. The force feeding of people with no quality of life. Mum was begging to die-she was ready but still nurses would want to try and feed her. Mum was preparing for the next journey. She didn’t need food. She needed compassion and acceptance that in her 90’s she was allowed to choose.

I did have a conversation with a liaison officer at the GP surgery and we agreed that there would be no direct interventions a few weeks before Mum passed.

No visits to hospital and antibiotics. She would be kept comfortable and EOL medication with her name on it would be waiting at the care home. No rushing around at the last moment.

That helped in the end I think. The medical profession seem to pride themselves on keeping people alive regardless. Care homes are big business now.

@moggerhangerI totally understand your frustration!
The hospital staff kept trying to feed MiL while she was comatose. And they would proudly tell us she had a weetabix! One day while we weren't there they got sone mashed potatoes into her mouth. We had to clean up the revolting mess for hours afterwards as it all came back out.
From my experience it is the care staff not the medical staff that insist on this ludicrous pantomime every meal time! But either way, it should not be yet another issue to deal with when clearly someone is dying.

I know exactly how everyone feels about the feeding. It's really soul destroying.

Once I went to add in when I thought was powdered milk to my tea in the care home then realised it was that awful stuff that makes liquid gloopy so it was easier for Dad to swallow.

There's absolutely no chance my Mum will give up on the feeding or the medical interventions though. She sometimes phones pretending to consult my sister and I about whether or not she should go ahead with vaccines although I've given up engaging with this as there's no way she'll stop agreeing to every intervention going.

Mum was preparing for the next journey. She didn’t need food. She needed compassion and acceptance that in her 90’s she was allowed to choose

So right and so sad. They wouldn't let mine go, kept propping her up and feeding. When I visited my role was to encourage her to eat and drink. I didn't want to, because her time to fade away had come. What a desperate situation. I knew nothing about any of this stuff.

Care homes are big business now

Very.

Im so sorry @eggplant16 . It's all so difficult to grasp, isn't it! I'm actually surprised at how hard I'm finding it to cope with. I'd made peace with her illness, I'd made peace with her dying. But this has shaken me up totally. It's knowing it's now happened twice - crisis then bounce-back for several months. I'm already atheist but if I wasn't, I would surely be questioning whether a loving god existed.

I've now written to the home, stating that neither I nor my mum's sister (her remaining close relatives) support medication which has the prolonging of life as its intention or outcome - including antibiotics and steroids. And that we are uneasy about tapping her mouth with a spoon to open it, as that could indicate an instinctive reflex response rather than actual hunger. Although we recognise the care staff are duty bound to continue feeding, even though it will prolong the dying process. I spent a while trying to get the tone of the wording right, as I absolutely don't want to put the home's backs up - they are doing a fantastic job, it's just that counterintuitively, I would rather they didn't do a fantastic job.

You are not wrong. There is another thread on here about a lady with dementia whose care home want her to have 1-1 care for her waking hours. She is self funding her care. The proposed cost of living in the care home with this 1-1 care? £12k a month!

@moggerhanger Well done, I hope they listen to you.

@TheShellBeach thank you for pointing me here. I will have a read and likely learn many things. My own mother died of cancer so I am very familiar with how death happens in this way.

My MIL has dementia and it's my first experience with this. I am not NOK and have had to set my own boundaries as far as care and involvement is concerned so I have consciously not educated myself a great deal, instead leaving it in the hands of professionals or the NOK. Obviously though, because I love her, I want the best for her.

My FIL has Parkinson's as has been in a nursing home for 4 years. He pays 8.5K a month. He is well cared for, but because he's an 'easy' resident ie. happy to sit in his wheelchair not making a fuss, he is not stimulated enough.

Welcome to the thread @CharlotteBog

A message from my SIL this morning made me think of this thread.

She says "She’s not eating & drinking but the food there is nasty. Not the right place to get better so none of it is making any sense."

I'm not going to say anything (your Mum isn't going to get better). I understand that my MIL has lost that part of her brain. Doctors are discussing DNR with NOK (MIL's husband).

MIL is in a psych ward and so DS2 (15) is unable to visit. He would like to see her and there is a chance she will be moved to a care home if she remains physically strong enough. She is very frail and cannot walk unaided now. If he doesn't get to see her I do feel comforted knowing he will have memories of her looking less poorly. I feel OK, we lost the woman she was a few years ago now.

Ah, so she's stopped eating and drinking again, @CharlotteBog?

It doesn't sound good, does it? I'm sorry you're in this situation. It's harder to navigate it when there are family members who don't really understand the process of dying.

Thank you @TheShellBeach
No, it doesn't sound good. I know progress isn't linear, but this is a sharper decline than any of us were prepared for.
Her husband seems to have a realistic understanding and my SIL's husband does as well. It's harder to accept when it's your own Mother though, isn't it.

MIL is calm and safe, which is at least some comfort; she was very, very anxious, stressed and confused prior to being sectioned. Also, there has been a reconciliation between her and her husband, who bore the brunt of her delusions for a good while.

Well, I graduated yesterday afternoon. I went to see my mum on Saturday as it was her 90th birthday - and she was weirdly with it! Awake and propped up, talking (albeit unintelligibly most of the time), and with some level of recognition in her eyes. I was a bit startled, as were some of the staff. One care assistant said she'd been working there 3 years and had never heard my mum speak, or make any noise other than groans. They were wondering if she was just responding to all the fuss around her birthday. But I had a little voice in the back of my mind saying "this is a thing, just before death, you've read about it somewhere." So I was more expectant than usual for the call from the home once I returned to my own home, and therefore when my phone rang yesterday afternoon, I knew what it was.

Mostly feeling flat and a bit sad, but also hugely relieved. Though not looking forward to all the paperwork and admin faff.

In case anyone's interested, this is what I think my mum experienced: https://www.medicalnewstoday.com/articles/terminal-lucidity-dementia

I'm so sorry for your loss @moggerhanger

Sorry for your loss and pleased that the burden is lifted and that you can start to remember your mum as how she was before dementia set in. Lots of love Stiffy x

I'm new here @moggerhanger and haven't had a chance to go back and read your story, but you've said enough for me to understand a bit.

I'm sorry for your loss 🌷

@moggerhanger sorry for your loss and glad you had those moments.
Be really gentle with yourself, and ask away if anything us fellow grads can help with in the days and weeks to come.

@moggerhanger I'm so sorry for your loss x

Thanks everyone 😘