Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

Yum yum. Oops, was I supposed to share them? 🍪🍪🍪

Solidarity to everyone soldiering on month after month with no end in sight.

I am steeling myself to be ready to take some action at some point but I am not sure what is possible. My mum’s POA gives me the power to decide if she should have life sustaining treatments. But what are they? I understand that I can refuse vaccines and if she got pneumonia I could (and I think would) refuse antibiotics. But are antibiotics for a UTI a life sustaining treatment? If she lost the ability to feed herself, is having one of the care workers feed her a life sustaining treatment?

When I sent the new care home my Health POA, I also sent them a copy of a diary entry she made about the time my parents were doing their POAs. She wrote about what she wanted if she were to become seriously ill…she used to volunteer in a hospice… “I do not want to linger uselessly for long weeks or months - I have seen other families endure such torment, their lives on hold. I want to spare you the misery of such a vigil - you must consent to ‘let me go’. You must agree that I am released from a life that is not a life. Please honour my request, please be brave - do it for me. This is my last wish.”

I haven’t yet had a conversation about the diary entry with the manager of her new nursing home as they don’t really know me - mum has only been there a few weeks - and I don’t want them to think I am asking from anything other than a place of love but what is the full power of a Health POA? Does anyone know how much I could refuse on her behalf? I don’t know if the nursing home will ask me if she were to need antibiotics for a UTI or would just get them and give them to her. Or perhaps they will start to ask permission when she is (even) more unwell, not eating as well but currently drs decide if treatment is appropriate?

Oh, Choux, your dear mother's diary entry has made me very teary. What a compassionate and clear-sighted woman!

At one point my DSis and I managed to persuade our DM, who is the one with POA for our DF, to sit down with us and the nursing home manager to work through some kind of care plan for our DF. DM was very reluctant to engage with this, and to be honest just went along with it to shut us up and has since ignored it completely.

But it did give an opportunity to discuss various aspects of care and treatment, and that could be helpful for you. We've never met with the GP who works with the nursing home, and it would have been good to have had their input as well, especially around the giving of medication for comfort v medication for treatment. Given you do have POA I think you should be able to specify that you should be consulted about any medication, and you can give them a strong steer towards minimal intervention.

I have really struggled with the approach to feeding my DF. He has been getting spoon-fed mush for about a year now. He can hold a cup to drink. At one point last year he was extremely thin - BMI of 15 - and so the nursing home and my DM were at great pains to get as many calories into him as possible. So they were giving him very calorie dense foods and drinks. I suggested that he simply be offered or given the usual food, and basically let him fade away, but my DM's response to this was that she didn't want him to be starved. I wasn't suggesting that - simply that I didn't see the point of feeding him up so he can be miserable for longer. I find it all very distressing, and I think I posted about it here at the time. It's made worse by the fact that my DS was a low birth weight baby who was tube-fed, refused the breast and was very difficult to wean onto solids. There seems to be more support and care given to feeding a man at the end of his life than there was to my son at the beginning of his. But I digress.

Every so often, when my DM tells me about antibiotics, or vaccines or how much food she managed to shovel into him, I say "to what end?"

Is the purpose of this (whatever this is) to make my DF more comfortable or is it to prolong his existence?

Once a week I take my DM to visit the nursing home, and I spend my afternoon eating biscuits! So I also appreciate the chocolate biscuits on this thread!

As far as I understand it, if you hold health POA then you are speaking with the voice of the person you are acting for once they lose capacity. You consent/ refuse consent on their behalf for all treatments, and should be consulted on all health decisions. That diary entry of your mums wishes is very clearly written, bless her. You need to make sure the home have read it ASAP.

in our case, I’ve told the home that I’m happy for them to go ahead with all medications that would make mum more comfortable, but I do not want her automatically prescribed antibiotics, even for a UTI, without asking me first. I’ve also told them that I don’t want them to encourage mum to eat too strongly IYSWIM. About the only autonomy she has at the moment is refusing to eat if she’s not in the mood, and I also believe that that could be her body slowly fading away naturally.

very thankfully, DB and I are on the same page that we should allow mum to go when her body is ready. Even though he’s far more sentimental than me and gets very upset whenever we’re talk on this topic, he says it breaks his heart to see her how she is now and how fed up she looks, and has said any life extending treatment would be for our benefit and not necessarily hers.

Reading some of the posts about siblings on here I’m ever so grateful that our parents managed to bring up two kids with their heads screwed on ok. Don’t get me wrong, DB has had his utter dickhead moments and he knows my opinion on those moments but when it comes to these kind of situations regarding our parents we do trust each other implicitly.

I found myself nodding along to all these comments.

Dementia isnt some kind of locked in syndrome. The person they were is disappearing before your eyes.

I have found the POAs less useful than they should have been. This mainly due to DB not wanting to face facts. One thing I was able to do was decline a pacemaker on DM's behalf. DB is still sore about this.

Oh @StillNiceCardigan 💐that is horrible. I understand how you feel. I once managed to break the crown on a front tooth the day before an interview.

@Seeingadistance Every so often, when my DM tells me about antibiotics, or vaccines or how much food she managed to shovel into him, I say "to what end?"

Is the purpose of this (whatever this is) to make my DF more comfortable or is it to prolong his existence?

My sentiments entirely when it comes to DB with DM.

Thanks @Seeingadistance and @funnelfan for sharing your experiences on asking for things not to be done for your parents. Some of your phrases are really helpful in figuring out a gentler way to ask that they not automatically assume I want everything done to keep her alive.

In the last fortnight for the first time ever I had to feed her - previously she always fed herself even though she eats very slowly as many spoonfuls she puts to her mouth are virtually empty but she clearly wanted to eat when I fed her. Last weekend she ate her main course herself but when I tried to feed her the dessert she said no so I immediately stopped trying. I have also wondered if she will gradually eat less and fade away but she is very thin already and perhaps the staff will give her calorific drinks. I don’t know what standard practice is as I have never known anyone with advanced dementia.

My brother and I are pretty much on the same page now about treating mum but he has taken a while to get there. When I asked him a couple of years ago if she should still get the Covid vaccine he said ‘well I don’t see why not, she hasn’t had any adverse reactions to it previously’ totally missing the point about it closing down one of mum’s exit routes from dementia. Also when dad was in his 80s and his heart failure meds stopped working and there were no other medication options my brother asked me if I thought dad could get a heart transplant which was indicative of him not being ready to let dad go.

I don’t know what standard practice is as I have never known anyone with advanced dementia

@Choux all the people I've seen with advanced dementia gradually eat less and less, as they approach the end.
I've never been sure if they no longer recognise hunger, or if they simply no longer have an appetite.

It may just be the body's own way of helping them out of their situation. Unable to walk, unable even to turn over in bed, unable to control very private bodily functions - all that is horrible. It's no wonder that the brain puts the brakes on the desire to eat, for it's eating which keeps us alive, of course.

Drinking and thirst seem to go last IME. It's when people stop drinking that we can say that death is approaching.

Care home staff are in a very difficult position. It's natural to assist a helpless patient, and many of the staff may have very strong views on continuing to feed people who are actually trying to die.

It's a conversation we all need to have and face as robustly as possible. As a society we're (naturally) afraid of death, but I personally don't believe we should force dying people to eat, and we certainly shouldn't be giving them fortified milk and juice drinks.

I haven't got a clear answer but I know that I would assist somebody to eat if they clearly wanted to, and I would absolutely not try to make people eat when they wanted to allow their bodies to die.

All measures to promote comfort in the last few weeks of life must be used for the patient's benefit, mainly drugs and really good nursing care.

Also when dad was in his 80s and his heart failure meds stopped working and there were no other medication options my brother asked me if I thought dad could get a heart transplant which was indicative of him not being ready to let dad go

That's very sad, isn't it.
It also shows a complete lack of understanding about how your dad would have been expected to recover from a heart transplant if his meds weren't working.

I’m hoping the rollercoaster is not about to set off here. Mum was losing her voice a little at the beginning of the week and felt tired. She’s not eaten lunch twice this week and says she slept all afternoon yesterday. She just feels generally unwell but no specific symptoms she’s just tired. She’s asked the GP to come out but I expect it will be a case of it’s a virus. My sister visited yesterday but didn’t stay very long and didn’t think to leave her a sandwich for if she felt hungry later because mum cancelled the lunchtime carer with my sister being there.
DD is still at her dad’s and I have t heard from her since she assaulted me at the weekend. I’ve heard from my other dd and mutual friends that she’s being allowed to see her boyfriend and do what she likes there. Which is why she goes of course. Dad’s idiotic fiancée will be allowing her to drink alcohol. My mum is the least of my problems right now and I hope she’s not got anything going on other than a mild virus. She seems unable to accept that two major surgeries plus four broken bones at 86 is going to take more than 6 weeks to recover from. The physio told her 18 months to 2 years for full recovery even if she was 40. She’s doing more which is great but asking why she’s so tired 🙄 She always feels tired and unwell when she starts doing more.

@GnomeDePlume DH keeps up with various ex-colleagues, one of whom once had open-heart surgery. Talking about this, the chap said the consultant had said to him,
If you ever get a pacemaker or automatic defibrillator implanted, make sure it can be turned off remotely .
As one of my elderly relatives, who recently died after a few years of dementia, had a pacemaker and was otherwise in outstanding physical health, I can see where he's coming from.

"My" elderly relative was sick again yesterday. Luckily she has capacity (as in, I think that too, she's not an "I won't bother the doctor though my leg's hanging off" type) so it's not up to me to decide how many vomiting episodes in a year is too many.

@Choux
Your mums note made me tearful, too 💔
I'm mums only poa so the buck stops with me, which is fine.
She seems ok today, is eating.
She's already got rid of the zimmer frame 🙄😬

Mum was ok when I got there. Not quite as good as normal but nothing of note. The GP came out and she’s so lovely. She essentially said what is said in my earlier post but mum seems to keep needing it repeated. Not from any confusion point of view but from a hoping someone will tell her different point of view. She just wants to be up and going and she is but needs to learn to rest too and not do too much. The GP said she’s doing way more than other 86 year olds out there and there’s nothing of concern. She’s being warned off the morphine and has no pain which is amazing because in December she could barely stand or walk due to pain. Now she can, with a little help, stand to make a stew or soup or light meal. She’s independent with her personal care and always has been except fur really bad days. She’s been out to lunch and I’m taking her to the nasty city on the train next week hopefully. I just need to get her a wheelchair from somewhere.

I just pointed out to DH to to that we are now in year 12 of elderly parent demands. He reckons we'd have got less for armed robbery.

He's not wrong!
Not seeing mum til monday now and I've done a few admin things today so that'll cut down on how long I need to be there on monday.

I arrived this morning and it was lovely to see her not in pain or in hospital.

we cleared her shoes out, so many Gabor shoes all with shoe trees in, but she’ll never wear them again so together the decision was taken to send to the charity shop.

Ive added a photo of her demolishing her fish supper this evening, 89 but the fish didn’t stand a chance 😁

@watfordmummy
Love your mums jumper 💙

@MysterOfwomanY there was no chance DM would have been a suitable candidate for a pacemaker. The consultant and I agreed on this but badged it up as me declining.

DM has taken a turn for the worse. We are now at the morphine stage. DM isnt in pain, more discomfort.

@GnomeDePlume
((Hugs))

Oh Gnome - this is so agonisingly slow for you and your brother.
I'm glad your mother is now on morphine.

@Dormit
I just wanted to recommend the book never let go by susanne anderson...
It helped me be able take a step back from my dcs issues/difficulties.
She has YouTube videos, too
X

@GnomeDePlume

It's so hard @GnomeDePlume . I never do this but sending unmumsnetty hugs.

@GnomeDePlume it sounds awful but every time notifications say you've updated I hope it's that your mum's suffering has ended.

Thank you for all the messages of support. I really appreciate them.

My hope is that DM will be able to quietly slip away.