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.

I work in a nursing home and as it’s been mentioned in the thread people with dementia and in your FILs condition can hold on for quite some time. I wouldn’t be writing up any messages that indicate that he may pass soon as he may not. I’m sure this all feels very fast (the decline) and that death is not to far away but in my experience people can remain immobile and bed bound with little to no food and water intake for a very long time. I would send a factual message updating them about the recent hospitalisations and the catheter and they can do with that information as they wish, if they want to visit they will. Keep visiting him regularly and follow the advice of the nurses in the care home and advise the family of any future changes.

it's evident that he's facing a losing battle with this relentless disease.

Who TAF would send that whole morbid chat GPT thing? It's a sad situation enough without adding an extra dose of clinically depressing longwindedness.

Succinctly put.
I don’t get why op is so keen to rush and tell family in this way.

Sweet Jesus at the ChatGPT suggestion 😳 wow

What were you thinking?!

Well it's not like they're going to give a precise ETA is it!

But they can predict a potential timescale, for example, a week or so before my mum died in late November, the doctor told us she was unlikely to see Christmas.

More realistic than Dr Google, I would think!!

@Runnerinthenight ok firstly, calm down 😅 secondly, they might have in your mother's case, but from experience, they won't be able to in the case of many old people (especially similar to what OP describes). Also, no one is suggesting Google – certainly not me.

Oh dear - as a million other PP have said, OP, your husband is the one who should be contacting his family (if he feels it appropriate at this stage).

The messages some people have suggested on here would be akin to throwing a hand grenade into his already fractured family relations.

Step away. Support him in whatever he wants to do or say about his father's illness, but don't overstep.

FWIW, I am a Luddite so don't have Whatsapp etc, but I can't imagine that a group chat is an appropriate method to communicate. I would ring the people concerned (and wouldn't ask my DP to do it for me).

As for those AI messages: fucking hell.

They are absolute mawkish shite.

"In these challenging times", "these trying times" ... it's like a government minister trying to justify lockdown.

The grammar is rubbish in places, too.

Am I right in thinking that no one in the medical profession has said that the family need to say their goodbyes and that this is all coming from a google search of the term 'severely frail'?

In my experience the palliative care team are the ones who, if asked directly, will tell it like it is. Your Dh needs to talk to them before either of you start acting on the results of your Google search.

At this point in time I would be looking to discuss the practicalities of end of life car rather than an overly dramatic announcement.
Discuss who wants to be notified if he takes a downturn, and who wants to visit him at this stage. They need to make a clear decision regarding a DNR order. It may be like herding cats but it is so much easier to make decisions about your FIL’s care if everyone is in agreement, and before emotion takes over. You may be surprised by the relief this sort of discussion imparts.
I think your DH needs to stress that all though he is the first point of contact he understands that it should be a family decision. He can give them a few weeks to think about it but then they need formulate a plan.
Keeping it all very matter of fact and no big dramatic announcement should help.
They all know he’s 88 with dementia and deteriorating. They are probably all waiting for the subject to come up. Sometimes you just need someone to take the lead.

@54isanopendoor suggestion is perfect.

When my granny was dying my dad went into complete denial. I ended up going to pick him up, manhandling him into my car and driving him to the hospital. We said our goodbyes and she died a handful of hours later. If I hadn't been so forceful he would have missed her, and he was grateful for the intervention. It's not uncommon for people to wither not realise, accept or want to acknowledge that the end is close.

Sometimes it's hard for people to accept the finality and awfulness of it all. The message above is perfect, gently and sensitively written. It gives them the facts and their chance to act if they want or need to. That's as much as you can do.

Hospitals and care homes are usually pretty good in telling you when the end is very close, so I hope that you'll have a further opportunity for all lf you to say your final farewells when the times comes.

I spoke to a dementia doctor once and he said that studies had shown that even with the minimal brain function, people with dementia still had special, measurable brain activity when hearing the voices of the people they love. So he will know who you are and that you are there, which is a huge comfort.

I'm sorry that you are losing your FIL and hope that his and your suffering isn't too awful for you all.