Siblings - selfish, deluded or...?

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.

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.

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.

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.

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!

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. 💐

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.

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?

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)

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.

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 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.

Is there a power of attorney?

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?

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)

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.

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.

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?

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.