End of Life Message - please help me with wording

[makesmestronger]

Firstly apologies for posting here, and apologies if this is triggering.

My DH and I are power of attorney for my FIL. Sadly FIL was diagnosed with Dementia and Alzheimer earlier this year, he refused to take meds and the disease has progressed quite quickly.

In May since the diagnosis where he was living independently quite happily, he is now in a care home, can't use his mobile phone, loosing weight, he can't have a conversation with someone (as engage in the conversation) he can't remember people that visited him 2 days ago. He was admitted to hospital 2 weeks ago and has now come home with a catheter, which he has pulled out on one occasion and is constantly 'tugging at it'. On the hospital discharge notes he was measured/documented as severely frail, when I looked this up on NICE they are saying he has 6 months or less to live.

He was admitted back in to hospital yesterday with blood in the urine, and he was dehydrated.

There is a family whattsapp group for his elderly sister (DH's Aunt) and the 4 other siblings of DH. The sister is in denial that her DF is poorly and I want to try and gently break to them that FIL is poorly and is deteriorating, and he is not going to get better to full on eating, walking etc.

The home are trying their best to get him to eat - but I get it he is tired, he is 88 he never wanted to be poked and prodded. They can't force him to drink we can talk about ways of encouraging him so his favourite soft drinks etc but I do feel we could be 'rinsing and repeating' what we had this week.

I am very tired and brain is not thinking - help me with some words/phrases I can use to say that he is fighting a loosing battle with the dementia and we've seen him go from independent living a few months ago to two hospital visits in as many weeks and they need to start thinking of preparing themselves to say goodbye.

I can't do it by call as - SIL and one BIL have made their feelings very clear that they don't like me, and siblings live in different parts of the world - and this isn't about their feelings towards me its about me and DH doing the right thing by FIL.

No, no no did you really suggest using an AI bot to draft a group text with that sort of news?! What on earth is wrong with people?!

Putting myself in the siblings shoes:

I don't like one of my BIL's. And neither do my other two siblings. I won't derail by explaining why, but we don't speak to him.

If my DF was dying, and my BIL took it upon himself to tell us such sensitive emotional information about MY DF via a group WhatsApp, I'd not be happy. Not happy at all.

I appreciate the reason your DHs siblings not liking you are probably nothing close to the reason why me and my siblings don't like my BIL, but I can't see it going down well with them.

If your DH is just too drained to be making several phonecalls, then I can totally get behind a WhatsApp message, as it only needs doing once to reach everyone. But it really should come from your DH. Whatever the reasons are for your DHs siblings not liking you are (and are justified or not), I'd still recommend treading carefully with this.

Maybe you and DH can discuss the wording together, and writing it down. That'd be giving him the support he needs without riling up the siblings and creating any unnecessary and unwanted extra tension and drama.

Maybe your DH could do a WhatsApp voice note instead, so its at least more personal and doesn't come across as cold?

ETA please don't you an AI chat bot to do this!!!

@JudgeJ It seems to be the MN way that only the biological child has any responsibility regarding parents but if a couple have been together for a long time and the relationship has been generally good then it's not unknown for both to care and be involved.

The MN universe is a weird and wonderful place indeed! 😂

It’s you that lacks empathy. My DF died in similar circumstances last year and if my SIL (who I get along with actually) had taken it upon herself to send me a message like that I would’ve been angry and hurt. And yes, I get that op wants to ‘find words’ for her husband, but I would know straight away if a text that came from my brother was actually written by him or not.

This is a situation where as hard as it is, OP’s husband needs to go it alone and do the right thing. He needs to find the inner resource and pick up the phone and talk to his siblings.

Very sorry to hear about your FIL but yes, if his family already don’t like you then keep out of it (apart from supporting your DH). Nothing you do will be right and for them having a difficult message delivered by someone they don’t like will make it worse. If I was your DH I’d send something very simple and encourage them to visit for themselves and speak to his care team.

I get your intention, and I've seen the denial from people who aren't primarily involved/responsible for the person.

But I think start preparing to say goodbye soon is a bit alarmist if taken literally. I think you could say "he could go anytime" or something like that.

This sounds like the start (which wasn't really a beginning, more like a sharp fall of a cliff in graph terms, though she'd been going downhill for a while before that) of my grandma's incidences / crazy deterioration. We all thought she was going to die soon – shocking to see someone so full of life become a shell of their former self. Dementia worsening, the futile going in and out of hospital (where she had to be tied up to not pull any tubes out), incontinence, refusal to eat food and drink, in dreadful pain all the time, etc... And then it was an almost awful 5 years of her being basically immobile, going and coming into hospital from various incidences for various attempted patchwork by doctors and nurses, etc etc, until the doctors actually literally told us it was time to say goodbye and it was (but they only can in very specific predictable instances of course). But it could equally have been 5 months or 5 weeks, because every incident was touch and go in someone so severely frail.

Isn't it better to avoid making it like some grand formal announcement. Why not a short update and then see what other people on the group chat respond with.

I don't think your dh needs to say anything beyond stating the facts of what the hospital has said. Let them interpret it how they may.

At 88, with dementia and regular hospitalisations anyone who is denial is choosing to be in denial and that's their prerogative. They won't take kindly to being told otherwise. They will shoot the messenger.

@makesmestronger - I think you have misread the NICE guidelines. I think severely frail means that he is NOT expected to die within the next 6 months.

I think it would be better before you do anything, if you ask the hospital/his GP whatever to clarify. The last thing that the wider family need is to be told oh you need to come quick because he's likely to be gone in the next 6 months - and then he's still here in a year. He is likely to be in and out of hospital for a while. My late Mother was in and then out and home again for a while - and then back in again. And that went on for more than 3 years! It's very common

Definitely a good idea to let them know exactly how much he has deteriorated, and they may want to visit him before he no longer recognises them etc. but not put a complete 'this is nearly the end message on it' until the hospital tell you that. But I also agree with others - it should be your DH who tells them that and not you, when you know some of them don't like you. And if not all the family get on with all the others, ask those you speak to to let the others know?

Very hard for you and DH and I feel for you

It needs to come from your DH, but it doesn't matter what your DH says, that won't change anything nor make it easier. Suggest that he just keep it simple and let them bring questions, that's easier. "Sorry to tell you bad news, but Dad is very unwell and frail, his memory is also very poor now. Let me know if you want me to help with any video calls, or if you are coming here to see him."

I think you've misunderstood the guidelines too.

I would just say FIL has taken a turn for the worse and it's not looking good. Please get in touch with DH for a full update or go and see him in x hospital ward x.

Ah thank you this is what I was saying, and nicely describes the last 5 years of my grandma's life, and come to think of it the last 10+ years of my other grandma (in a nursing home – dementia, had to be force fed or drip fed, had every single symptom/incident OP describes, was hospitalised for the same reasons as in the OP among many, eventually only died from Covid).

He could really be gone soon, but sometimes dying takes a really long time even where they're in absolutely no state to live, going in and out of hospital lots too.

If someone had sent me that, I'd be wondering WTAF was wrong with them!!!

Having been in this situation, I think you need to take a step back. By all means support your DH but do it behind the scenes.

Clearly there is already a lot of bad feeling. Your intervention however well-intentioned is likely to add to that.

This is not a matter for a WhatsApp group chat. Your DH will need to lift the phone and have an actual conversation.

Before he does though, you should make an appointment with your FIL's hospital consultant and ask about the prognosis instead of googling it. That way, your DH will have actual information to pass on, and family members can decide what they do with it.

I think the hospital won't be able to provide an actual prognosis (or well, death date, like the Grim Reaper)!

From experience, if death is really imminent and almost completely inevitable in an old frail person (eg something catastrophic has happened like sepsis or organ bursting or organ failure), they will tell you explicitly and strongly urge you to get everyone to say goodbye.

Most other times, they probably know the old person could go anytime but equally might hang on for years in that limbo. Or they may wrongly gauge an incidence's severity and then death unexpectedly happens.

It's probably good to say goodbye and make peace, whether to avoid regrets for impending death, or in preparation for the long uphill battle if FIL stays alive.

But I agree that OP shouldn't put words in the doctors' mouth re: FIL's prognosis.

Sorry, but if you know already that they don’t like you then it’ll clearly not help for you to say anything. It will only annoy them, probably. This is for your DH to deal with.

Do they know that he's been in and out of hospital? I'd expect them to be asking for updates tbh .

I too would be appalled if I received that AI created message. It is awful and so stilted. I too would be going wtf? If I received it in similar circumstances

I’d keep it simple just say there’s been a steep decline in his health

it make them awar the sit has changed and they can follow up if they want with you or care home and doctors

Yeah, it reads like a god awful BBC radio 4 monologue or some shit. Regardless, suggesting using a fucking robot to draft a message about such an emotive and personal thing is mental

We had this situation with my mother. I have 3 sisters, 2 I’m close with and the third one (let’s call her Eva) is really odd and we are very low contact.

I was alone with DM when she was told by the consultant there was no treatment avenue left for her terminal cancer, and she needed to prepare for the end. I tried to share that information as gently as I could with my sisters, but Eva took it very badly, like I was wishing DM dead and wanted to withdraw care from her. She was adamant DM shouldn’t be moved to a hospice, even though that was the only alternative to a hospital death.

In the end DM died two weeks later in hospital, having refused (on Eva’s insistence) a hospice place. For context, this was in Canada where hospices can provide very significantly better conditions at end of life.

The reality is that people have all sorts of weird reactions to pain and grief. If people feel, for whatever reason, that you are “against” them, they will put that interpretation on whatever news you give them.

If your SIL and BIL already don’t like or trust you, then I’m afraid there’s nothing you can do to help them prepare for this. They will not thank you and they will resent you. It’s not worth your effort and heartache.

I’m sorry OP, this sucks. I hope your FIL has a peaceful and pain free end. 💐

She could send the message from his phone so it looks like it's from him, if he can't do it.

I find this beyond creepy, but I recognise that some people who struggle with words might find this better than anything they could write themselves.

Still, it’s nauseating and I hope that’s not the future of humanity. 😔

DH and I have been in this situation with both sets of parents, years ago way before social media. We called family members directly. There were no 'rifts' on my side so it was easy. But my DH and his DB were not on speaking terms when his mother was 'failing badly' so he asked an uncle to relay the information and gave him the nurse's station phone number to give to his brother.

I believe that DH should call the ones he can call and deliver the information personally by phone. Then advise them that he will shortly be posting a group message.

@JudgeJ @ilovemyspace

OP has already said that her BIL and SIL’s don’t like her. Hence it’s better coming from DP. Nothing to do with the Mumsnet way. Purely family dynamics!

I don't think anyone is saying OP shouldn't support her DH of course. Just that any message should come from him, because OP isn't that close to the recipients.

I don't think anything should be written without speaking to the doctors and getting them to give their view on what's going on. What we have here is OP has got herself worried, plus read something wrong on the internet (internet health searches are notorious for giving people the horrors.)

Don't get me wrong, she might be right but the people to tell her that are FiL's doctors.