Siblings - selfish, deluded or...?

[Outofstep]

No idea who I can talk to about this or even how to frame it.

My Mother is incredibly ill and now in a nursing home after a massive stroke that paralyzed her, with the added awfulness of dementia and a broken hip.
She is immobile, tube fed and hallucinating. This is not even the full litany of the serious things she suffers from. She can communicate and can sort of be her old self but in a weird "replay" of everything. It feels like a loop.

My issue is my siblings who love her very much but are unable to acknowledge her pain and situation in any kind of serious way. They deny everything and jolly along the narrative with funny anecdotes about things she has done or what she is like now, "ha ha, she has been cross with a nurse", or "ha ha she was greedy for water".

I am massively upset and offended by this reduction of her to this story. She is not a plant, she is my beautiful, amazing, smart, wonderful Mother. Who is now suffering.

If I believed her life was happy maybe I could accept their inane reframing of everything but I believe she is not happy, she is drugged up to her eyeballs to cope with the dementia and the enormous pain of a broken hip.

My siblings want to preserve her life at all costs. I want to have a conversation about not doing that.

I think they are being selfish.

I don't even know what to do anymore. I am angry with them.

Anyone who can help me? Anyone wiser than me who can help guide me?

I agree that speaking to her medical team would be the best first step. Once you have all the facts, perhaps you can then speak to your siblings.

I understand your frustration, a couple of my family members were in denial about the seriousness of a relative’s condition when he was suffering from terminal cancer. It doesn’t help the situation. 💐

It is so hard to see the suffering of loved ones prolonged needlessly. I really think you should request a consultation with the nursing home management and your mother's attending physician.
With my father I underscored the seriousness of his comorbidity: a serious neurodegenerative disease which leaves no hope for any improvement whatsoever. I also kept stressing that at 80+ years my father has had a pretty good run, that it was imperative to keep his suffering to the absolute minimum. I also pointed out that quality of life should not be compromised for the sake of quantity of life.
While my sibling has reasons for wanting to prolong treatment, I must admit that I had absolutely no qualms about going to battle for my view. My mother died in a hospital corridor while being ferried from one department to another. To this day it hurts me to think of her final hours.
So, for me, it is imperative that my father does not spend his final months in and out of hospitals that are not geared towards the treatment of patients with dementia. He deserves to die peacefully in his own bed and as much as it will break my heart when that day comes, I would never contemplate prolonging his life needlessly to please me.
I'm so sorry about your mother and wish you all the best in this difficult time!

How many siblings are there? Do the others all agree with each other? I would suggest a family conference with the nursing home and ideally her dr to discuss a way forward. My mum is in a nursing home but does not have dementia and she has been very clear that she does not want unnecessary measures to prolong her life and we have a medical POA and guardianship in place.

Did you ever have these kinds of conversations with your mother before she had dementia?

I wouldn’t necessarily put too much store in your siblings’ messages as indicating they don’t ‘understand’ like you do. Some people find it extremely difficult to let go. I am dealing with a serious illness of my own and there are people almost demanding that I sit around with a long face crying into my hands. That’s not my way, but it doesn’t mean I’m in denial. I understand perfectly well what is happening I’m just not expressing it in the way others think they would.

I would also suggest a group meeting with all of you and her medical team so they are hearing it from someone other than you.
You and they can ask specific questions about her pain, comfort levels , prognosis etc
Maybe that will give them a bit of a reality check.
Power of attorney can be shared I believe- but it would be hard to justify your having it over your siblings though.

Do your siblings understand what the medical team is saying and is the medical team actually providing clear information?

We had a situation with my Dad where all the medics assumed someone else had told us what stage we were at, but none of them had and none of them was explicit about what they were talking about. I'd guessed it and done some research of my own so had a pretty good understanding of what was going on but if I'd
been less switched on or able to read between the lines I'd have thought still actively treating was reasonable.

If you could get them together with at least one person from the medical team and get it spelt out (in non-medical terminology if necessary) what the situation is, what 'active treatment' would mean etc. Someone who doesn't know probably has no idea how invasive active treatment can be, how brutal resuscitation is etc. Sadly the negative press around the Liverpool Care Pathway probably hasn't helped in these situations.

It makes it difficult for you, but a lot of people do use humour as a coping mechanism in this kind of situation.

As you’re concerned about your Mum’s quality of life and the pain she’s in (when not drugged up), perhaps consider using phrases like “ what’s best for Mum” and “her quality of life” when talking to your siblings.

My Dad told me that he was happy for my Mum when she died as she was very ill and in pain- and no medical interventions could cure her. It sounds weird, but he was happy that the person he loved wasn’t suffering anymore, IYSWIM. It wasn’t about his needs, but hers.