Sister excluded at end of life care

[Mrsm010918]

Now I will preface this by explaining that my sister has quite severe learning difficulties in that her mental age has never progressed past that of around a 12 year old. She does however, have capacity to live alone and maintain relationships.

My mum has just been hospitalised and 2 masses have been discovered in her brain. The doctor is looking at it being secondary cancer so not a long life expectancy at this point.

The problem is nobody is bothering to keep my sister updated. Her and my mum haven't got a great relationship, it's superficial at best, but DSis does keep in touch and tries to visit etc. My mum is never welcoming with her and its all rooted in the fact that DSis is in contact with her dad. He's done some pretty awful things to her over the years, as well as to the family as a whole but ultimately she contacted him and she won't be told anything bad about him. This has been ongoing for at least 15 years now.

Mum has laid in hospital saying she wants nothing to do with DSis on her deathbed basically because she doesn't want any info getting back to her ex husband. DSis is ringing round everyone trying to find out what's going on, what the treatment will be etc and she sounds genuinely concerned rather than on a phishing expedition.

AIBU to find it incredibly harsh that everyone is blocking her out in this?

Even though it may mean she doesn't get to say goodbye?

My eldest brother agrees with me but the others are against her knowing anything

I am sorry that your mother is ill.

I don't know about the legal side of this (who one is allowed to tell, etc.), but can't you and your eldest brother keep your sister informed?

My father was NC with one of my sisters and he asked that she wasn’t told he was dying or where or when his funeral was. She’d done some horrible stuff to him tbh. It was his dying wishes and no way would we have betrayed him, he’d been through enough.

Explain to your sister that your mum doesn’t want to see her but you will provide updates but request she respects the wishes that news isnt passed on.

Sorry, this sounds incredibly stressful.

Who are "the others" who are against including her?

Why can’t you tell her what you think it is appropriate for her to know. If she truly has the understanding of a 12 year old then some of the info might not be helpful to her anyway.
This is an unusual and complicated situation. Does your mother really want to stop one of her children from saying goodbye? It sounds awfully cruel really. What will it matter what her ex knows about her when she is gone? Your mothers reasoning doesn’t seem good to me.

I also think this sounds very harsh on your sister. I think I would tell her about the diagnosis.

AIBU to find it incredibly harsh that everyone is blocking her out in this?

I don't think YABU but ultimately it's up to your mother, and her wishes should be respected.

I'm in this situation now and am not telling other relatives because it would be about them, not the person in hospital and that's not ok on any level. Just remember you are not the one stopping your sister from being able to see your mum, your mum is and she has every right to make that choice, harsh as you may find it.

I’m so sorry your mother is ill. I do understand her feelings about her ex, mine is a horrible abusive monster and I wouldn’t want him knowing things about me, especially when I’m at my most vulnerable. But I can’t imagine ever shutting out one of my children at all, let alone at a time like this.

I really hope your mum changes her mind soon.

It's your mother's wishes - why would you prioritise the wishes of your sister to "say goodbye" over the wishes of your mother who doesn't want her to?

Unfortunately for your sister its upto your mother what information about her medical condition is shared.

Just because someone is a family member doesn’t give them the right to someone else’s personal information if that person doesn’t want them to know it.

Also if you mother doesn’t want to see her then this goodbye isn’t going to happen anyway even if someone did share news on mum.

Your mums a dying women who doesn’t want her medical info shared with her horrible abusive Ex, that should be respected. Unfortunately your sister cannot respect that so she’s been cut off.

Unfortunately it's your mum's medical information. I can't imagine what it feels like to be dieing and having an abusive ex husband lurking around being informed by your children on your ongoing death. Awful for your sister, but if her mental capacity is so low, would she even benefit from any updates?

Keep it vague maybe - "mum is taking it day by day, she has good care, we'll have to wait and see".

I'm sorry for your situation, OP.

The bit I am finding difficult to understand is that your sister has the mental capacity of a 12 year old but in all other ways you are all treating her like an adult.

Can she actually understand the gravity of this situation or is this like expecting an actual 12 year old to be told their mother is dying but their mum doesn't want to see them?
That would be hard for me to cope with as a fully competent 40 year old. Why are you all expecting your sister to understand and cope with this? Does she understand how her decisions re. dad have upset your mum? I can't imagine my child at 12 would have understood consequences to that extent.

Personally, I think it's being poorly handled towards a sister who (maybe) simply can't understand the long-term connotations of this situation.

At the moment I'm telling her information on prognosis every couple days as and when we get more information, I am keeping it simple enough for her to understand but being clear about it. I haven't told her where she is in the hospital so she wouldn't be able to turn up for a visit.

My younger brother doesn't want to be bothered with her at all, and neither does my gran. My dad hasn't got her number stored on his mobile, only on the landline and he hasn't been home much understandably.

I would understand if they'd had no relationship at all for years and were not on speaking terms whatsoever, but they do have a relationship, albeit at arms length

Hmm.

Is your mum worried that if info gets back to her ex-husband he will turn up and cause her problems?

I'll be honest, when I was getting divorced I had to stop telling my mum anything as she was telling my ex and he was using that info to make my kids lives a lot harder. I couldn't persuade my mum not to talk to my ex so I basically gave up telling her anything

Will your sister feed info back to her dad who will try to abuse your mum again while she is dying? If so then I'm on your mum's side.

Just to be clear I'm not expecting her to be marched up to the hospital to be able to say goodbye or anything.

More the fact that no-one even thought she should know it was on the cards

I'm with your mum. I wouldn't want anything about my life or impending death to get back to my ex but luckily neither DD would dream of saying anything to him. If your DSis with a mental age of 12 is likely to tell him then you have to abide by your DM's wishes.

I think that this is incredibly difficult, more so due to your sister being in the position where it sounds like she will be processing this as a 12 year old might.

Yes your mum has some dying wishes, but she's really asking you to walk the line here and that's not an easy position to be in. There will be echoes of her decision long after she's gone and I feel it's unfortunate that she isn't able to let you manage this in a way that includes your sister a bit more.

All you can do is try to strike a balance and show them both as much respect as possible, but that's a lot of responsibility to shoulder at such a difficult time along with your own grieiving.

Is there no halfway house possible here?

Could you say to your sister that your mum is very very poorly and things are not looking good. That she’s not well enough for a visit but she has asked that no one talk about her illness to any friends or family (and particularly not her ex husband). That you will pass on all her love to your mum but you are trusting her not to discuss any of this with her father as that would be against her mum’s strong wishes.

At least then it’s not going to come as a total shock when she dies and it’s not so blunt that she is the only person not allowed to visit. Whilst I agree that your mum is entitled to her privacy, your sister is also entitled to be treated with kindness here.

It's unfortunate as hell that it's your mum's wishes and they'll obviously take priority - all you can do is what you're doing and keep her updated.

If you can manage it at the moment - getting some accessible resources together for her to help process things when they happen might be beneficial.

https://www.learningdisabilities.org.uk/learning-disabilities/a-to-z/b/bereavement
https://griefchat.co.uk/mencap-easy-to-read-guide/
https://www.mencap.org.uk/advice-and-support/wellbeing/dealing-bereavement
Might help with how to discuss it with your sister - depending on your area there might be LD nursing who can work with her later on to help process grief if needs be (but my team policy - I work in community LD but not as a nurse, is that we don't do this for the first 6 months post-loss because the grieving process needs to run its course).

And obviously - make sure you're in the best position YOU can be mentally going through this as well - the old adage about putting your own oxygen mask on in an aeroplane before you help others applies here.

It's tricky, I say 12 years old but in reality it's older on some aspects of life. She hasn't had an official diagnosis of condition or anything since she was a baby, she was just labelled as 'learning difficulties'. A lot of her struggles are centred around reading, writing, social interactions with strangers.

She understands that it is serious, and that it may go south - I haven't yet spoken to her since cancer was mentioned, she only knows a mass was found so far.

But yes, I would agree that her understanding around her interactions with her dad,and the impact they have, is limited. She is blinkered when it comes to him and has the simplistic view of 'but its my dad'. Thankfully at least he isn't local to my mum so it's not like she's being dropped off by him for visits at least

At the moment I'm telling her information on prognosis every couple days as and when we get more information, I am keeping it simple enough for her to understand but being clear about it.

So she understands that her mother is dying and doesn't have a lot of time left (by the sounds of it - I am so sorry OP ). How much support will your sister have when the time comes, assuming she does get told - presumably afterwards?

It's a very difficult situation to be in, you must feel caught in the middle I do feel you should support your mum by following her wishes, although it must be very hard. Can your brother take over that task some of the time, surely it's his job too?

It’s very difficult.
I understand why your mother doesn’t want her ex knowing. Presumably she is concerned that he will turn up and cause trouble or will bring sister to the hospital and find out where your she is. She’s not unreasonable to want peace and calm right now.
On the other hand it puts you in a difficult position and you don’t want this turning into a situation that you argue over for the rest of your lives. Sister deserves updates but may react like a 12 year old and beg her dad to take her to the hospital. As her dad is abusive anyway, he will probably be able to work out a way to find her eg following one of you to the hospital, hanging out in the canteen and seeing if you turn up etc

Thank you for this, this is how I feel.

It's especially difficult as at the moment I'm dealing with this from 200 miles away so trying to juggle everyone's feelings.

I'm working out logistics to get myself and DD up to say goodbyes in person sometime very soon so it really struck me I think

Thank you, I might have to print some bits out and get them sent to her via snail mail. She's not computer literate unfortunately.

I'm... trying 😅 it being half term this week and having both DD and the baby to look after has been especially difficult for taking time to myself.

Her father lives in the south, they are up north. He's also on oxygen and in no condition to travel, or at least based on what Dsis has said, so no chance of this being a problem at least.