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?

Sometimes humour is a way of coping with things that are too bad to face.

I think perhaps the anecdotes & " jollying" are your siblings' ways of coping with an awful situation. The denial is the same - pretend it's not happening and it won't be. I don't think it necessarily means that they really believe that, it's how they cope with knowing the truth.

Afaik, even if they refuse to agree to a DNAR, the final decision always belongs to a doctor.

With elderly relatives it has annoyed me being between my optimistic sister and pessimistic mother. My sister would go on about how well Uncle was doing and how there had been no deterioration for months, whilst my mum would moan that my sister was deluded and that Uncle was in a terrible state and suffering.

Imo the reality was somewhere in the middle. No, Uncle wasn't well and had dementia, but he was happy. Both wanted to see what they wanted to see without looking at the whole picture.

When my FIL was dying from the effects of experimental treatment for cancer; it was obvious to all three of his children and their spouses he was dying.

MIL couldn’t see it at all - all she talked about how was she going to cope (with him with an ileostomy bag) when he got home?

It was obviously denial!

I'm so sorry that you're going through this. I'm going through something similar, so I'll share my experience in the hope that it may help you. My father is very ill with a degenerative neurological disorder. He is in his mid-80's, living in a nursing home because he now needs round-the-clock care. A few months ago he was hospitalised due to Covid. The next fortnight was an absolute nightmare because my sibling told the attending doctors tall tales about my father's supposedly high quality of life. One day, I arrived to find my father terrorised with fear and sporting a bloody nose because hospital staff had attempted to place a feeding tube through his nose at my sibling's insistence.
I'm not in the U.K., so the rules may be different, but here, doctors have final say. So, I had a chat with the head of department at the hospital who then liaised with the nursing home and my father's neurologist. The head of department released my father from hospital after adding a DNR and do not readmit to hospital to his medical notes. My father is now back in his nursing home. He has recovered from COVID but will presumably be allowed to die in peace next time he catches a flu or similar. I'm pleased I was able to bypass my sibling's ill-advised wishes but I'm still heartbroken that my father has to continue to suffer through life because of my sibling's lack of understanding and compassion. So, if you can, try working with your mother's doctor's and the nursing home. It is terrible to see loved ones wither away once their cognitive function declines.

You needto allow your siblings to cope in whatever way they can. You sound like you want to control them and the situation. You can’t. And some compassion for your siblings might not go astray.

My elderly parent is wasting away with very little memory and ever-decreasing cognitive function. It’s awful but we all try to support each other and jolly our mother along.

Mainly, we put aside our own feelings to care for our mother and try to work out what’s best for her.

You’re going through something awful - I know how awful it is to watch a parent disappear in front of you. But being a drama queen and putting your feelings at the centre of things won’t help.

My brother and I are at different stages of acceptance re my dad’s dementia - he still sees some hope, I don’t. I’ve asked him to leave me out of care home emails etc for a while so I’m not hurt by the optimism (I didn’t phrase it like this to him, just that I needed a break)

Can you do similar? Agree not to talk about your mum for a bit except if needed for factual stuff?

Re the DNAR, is there a health POA which contains her wishes?

Thanks for all your replies and thoughtful input.

Maybe I didn't make it clear in my original post but their optimism has translated into concrete actions that have prolonged suffering. For example, that there should be a feeding tube, the agreement that all illnesses will be treated and antibiotics will be given. That medications and treatments will proceed as if she was mobile and healthy.

I don't see any doctors denying these treatments or actions now, so I don't really know how to raise these issues with anyone.

For the pp who said I was a drama queen and it was not about me, this is the farthest from the truth it is possible to get. I have huge compassion for my siblings and we have worked together to do unbelievable things for my Mother and her situation.

What I am trying to navigate is how to deal with people who are dealing with their own grief and tragedy in a way that is not necessarily for the best interests of the person we all love.

Your story sounds very familiar @snygghygge
Sorry you are going through this too.

It's actually the multiple hospital admissions, the drugs regimen and the feeding tube that I would like my siblings to reassess. It's hard when they are so optimistic and offended at any ideas that it may be kinder to stop.

And there is no DNR order as they have agreed with the nursing home that the absolutely do want resuscitation. I didn't even say anything about not doing that as it goes down very badly.

Compassion looks different to different people. It's very very hard.

The person who sees taking all possible steps, as if their loved one had any chance at recovery, as showing their love for their parent. This might be seen as prolonging misery by their sibling.

The person who wants to withdraw all non-palliative treatment as showing their love for their parent. This might be seen as an unseemly hastening death to their sibling.

I'm sorry that you're going through it.

I think previous posters have missed the point.

I have seen this in my extended family. One sibling wanting to extend life and extend examinations, hospitals, treatment etc. The mother was transported from pillar to post, and at least once a sibling disagreed with the pointless stress she believed it was causing; the mother was clearly in a terminal condition, perhaps they could not face up to that? It did cause disagreement and I can completely understand why. But not really an open discussion about it (typical in my family though).

However, it was my extended family, and I don’t know what the outcome was in the end.

I just wanted you to know that what you are saying makes a lot of sense. And that you are not alone in having experienced this.

Is there any way the three of you could have a discussion with a HCP (maybe a palliative care doctor) who knows your mum’s case and can talk to when interventions get too much (I know you think you are well past that point and I am on the side of less rather than more, but your siblings need to be at peace with any decision to do less also)

Are you able to raise your concerns and thoughts with her medical team, away from your siblings? They also may be able to offer support & hearing their advice may help you too?

Yes, I will try that and speak to her doctor and the nurses.
They have done everything through one of my siblings and so it's her as the direct contact regarding the details of our Mothers health.

Is there a power of attorney?

Not for health, unfortunately.

My siblings were very suspicious when I suggested we get POA at all. I am not sure what they thought I was trying to do.

I only managed to get Financial done as during Covid it took forever and you cannot apply for both at the same time. She had declined too much to consent when the time came.

I applied for both PoAs at the same time, I think they were signed on the same day even. But it’s a moot point now. I hope you find your way through this difficult time.

Oh, I wish I had been able to do that. I am certain I couldn't do both at the same time, maybe Covid? I don't know why but I would have if I could, but I tried.

Oh, what a shame about the POA.

(I asked cos my parents put expressions of wishes on theirs about comfort care, to guide their attorneys when the time comes)

I would be 100% on your side about what I would consider overtreatment, but ultimately it is a medical decision (together with the patient when that's possible) whether to tube feed someone, not a family decision.

I'm afraid that when there is conflict between siblings I do think the doctors are less likely to make the decisions that, frankly, I am certain they would make almost without exception for themselves - to reduce medicalisation, to avoid tube feeding, to get good quality palliative care.

Having said all that - tube feeding doesn't extend life. It almost certainly won't make your mum live longer than she otherwise would have done. And I'm sorry /glad to say it doesn't sound as if she may have very much longer to live.

What's your top priority for your mum? Is it comfort? Is she having anything by mouth at all? Ask your siblings what they feel about her having some comfort tastes like ice chips, and if you can all agree that, ask the nursing home about it.

Unfortunately some people want to preserve their loved ones life at any cost, I've been there, it was left to me to sort out the whole care situation for my now ex gmil - 2 of her children kept saying they wanted her to "get better" and accused us of wanted to use euthanasia when discussing a dnr, the other was fixated on costs! They all have fairly poor literacy skills when it comes to forms and dealing with bureaucracy hence me taking it all on. For 2 years we visited her, she was unable to make any sense, no idea who we were, I had this feeling we were keeping her in pain like some kind of pet we visited. So sad all around. The children were just deluded though, at the funeral they kept blaming the government for "killing her" (she had covid but honestly, it was a blessing)

We did in-laws LPAs during covid, there's never been a problem doing both. Did my DMs years ago.

Who told you it wasn't possible?

My mum declined gradually then rapidly in her early 90s, with frequent mini-strikes, cognitive decline, lost mobility and unable to speak. She spent her last months in hospital. The consultants did not recommend tube feeding, resuscitation, or anything they felt was invasive. They just wanted to make her comfortable, as did I. Sibling wanted continued treatment but pneumonia took her.