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Original poster

End of Life Message - please help me with wording

111 replies

makesmestronger · 14/11/2023 18:16

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.

OP posts:
AutumnLeaves333 · 14/11/2023 18:31

Surely this is your DH responsibility.. telling his sibling etc, not yours?

Dacadactyl · 14/11/2023 18:32

I would keep well out of it. Let your husband do it.

MaliciaKeys · 14/11/2023 18:34

I would say that sadly father in law is deteriorating rapidly and is very unlikely to make any kind of recovery. He’s being well cared for and is comfortable.

They can draw their own conclusions.

YeahIsaidit · 14/11/2023 18:34

That's up to DH to do, not you. Are you both actually PoA or just him? ... Seems like you're involving yourself a bit too much

Loopytiles · 14/11/2023 18:35

Very sorry about your FIL. I’d say nothing. People cope in different ways and you saying something is unlikely to help anyone, including you.

54isanopendoor · 14/11/2023 18:35

Dear Family WhatsApp Group,

I am sorry to have to tell you that FIL condition has deteriorated considerably.
I realise that it was not long ago that he was doing quite well, but H & I are seeing him daily & he is now going downhill rapidly. On his Hospital Discharge papers 2 weeks ago he was described as 'severely frail'. He is now back in hospital - dehydrated, struggling to eat & sadly struggling to focus at all. He cannot use his phone now & can't remember people for any length of time.
We understand you care about him & so we wanted you to be aware of how things are for him now. Please know we are doing all we can to support him but you may wish to start thinking about any conversations you want to have NOW.

This is probably not great but it might help you iterate what you do want to say?

FuckingHellAdele · 14/11/2023 18:35

If they wouldn't welcome a phone call from you, you shouldn't message. This is one for your husband.

RunningFromInsanity · 14/11/2023 18:37

YeahIsaidit · 14/11/2023 18:34

That's up to DH to do, not you. Are you both actually PoA or just him? ... Seems like you're involving yourself a bit too much

Supporting her husband at a devastating time is not really involving herself too much.

boomtickhouse · 14/11/2023 18:38

Someone needs to tell the siblings that if they want to visit their father, now is the time to hop on a plane.

Sounds like DH job though.

If you do do it, I think it's fair to acknowledge that he is finding it too difficult. Something like :

"DH & I have been to visit FIL again to day. Sorry that we cannot being more positive news but unfortunately he is deteriorating quite rapidly now. We've spoken to the nurses and the suggestion is that if anyone wants to visit him, please make your arrangements asap. If you need me to help with hotel bookings etc just let me know. DH would love to see you and have precious moments with his dad and siblings. Hes finding it all hard to deal with atm and so I am writing this to help take the burden from him"

Healthandsocialcaremodule · 14/11/2023 18:38

This isn't for you to do.

They know he's ill. This is their way of dealing and they will have to accept how they feel about how they handle this in their own time.

Whether you leave them to it or push them into action, they might feel guilty, they might blame you. Their problem.

Support your husband, enjoy what time you have with FIL.

NovemberName · 14/11/2023 18:39

I know this is a terribly upsetting time for you especially if you're close to FIL. But in all kindness OP your DH's siblings are nothing to do you with you.

Just step away and let your DH deal with it if he wants to.

These are grown adults not young kids. Also some people cope better by pretending the end isn't near.

Stop worrying about it and enjoy the final months with your FIL as much as you can.

ilovemyspace · 14/11/2023 18:39

I would use more or less what you've put in your post.

Start by saying that you want to keep everyone updated with how your FIL has been progressing over the last few months ....
You can't do anything about how people take the news or if they believe it or not - the only thing you can do is tell everyone what's happening, so they have time to take it all in and prepare themselves.
Don't worry too much about trying to keep everyone happy, you have enough on your plate right now

YeahIsaidit · 14/11/2023 18:40

There's a difference between being supportive and muscling in on everything and feeling it's your duty to inform others of what's going on

OneTC · 14/11/2023 18:43

My mum was in a similar position to your family member and she got put on small dose steroids and now eats like a machine. Once her diet got sorted her general health has improved. She's still fully mental but at least she isn't starving to death currently

If he'd be willing to try it then might be worth a go

Sorry I know that's not what you asking.

With my family who have taken more of a backseat I only tell them stuff if they ask. If they want a more active role they can come and get involved.

ilovemyspace · 14/11/2023 18:44

I'm not sure why people are insisting that it's nothing to do with you and it's all down to your husband?
You both have POA and presumably you want to work together and support each other at this time ..........

SkyFullofStars1975 · 14/11/2023 18:45

I've worked in care, OP, and you'd be amazed how long people can hold on for without much in terms of food/drink. The body can take a long time to shut down, and he could be like this for a considerable period of time. It's common to be bouncing in and out of hospital, and he may need to be in a nursing home as opposed to a care home where his care can be managed more effectively to avoid this.

I would send a simple message that his health has sadly taken a downward turn from which there isn't a prospect of recovery, and if anyone wishes to visit, it's an idea to do so before he is too poorly for visitors.

OneTC · 14/11/2023 18:45

About 6 months ago they only gave my mum a few more weeks at the outside

Dacadactyl · 14/11/2023 18:47

ilovemyspace · 14/11/2023 18:44

I'm not sure why people are insisting that it's nothing to do with you and it's all down to your husband?
You both have POA and presumably you want to work together and support each other at this time ..........

The reason I am saying its down to her DH is because his family do not like her.

I would 100% be ok with sending a message like this to DH siblings, but there's no bad feeling towards me from them.

I'm not saying OP don't help ith the wording, but the actual message should come from her husband in my opinion.

Bristolnewcomer · 14/11/2023 18:47

54isanopendoor · 14/11/2023 18:35

Dear Family WhatsApp Group,

I am sorry to have to tell you that FIL condition has deteriorated considerably.
I realise that it was not long ago that he was doing quite well, but H & I are seeing him daily & he is now going downhill rapidly. On his Hospital Discharge papers 2 weeks ago he was described as 'severely frail'. He is now back in hospital - dehydrated, struggling to eat & sadly struggling to focus at all. He cannot use his phone now & can't remember people for any length of time.
We understand you care about him & so we wanted you to be aware of how things are for him now. Please know we are doing all we can to support him but you may wish to start thinking about any conversations you want to have NOW.

This is probably not great but it might help you iterate what you do want to say?

I think this is good - I'd just get your husband to actually send the message. He's the blood relative and it would come better from him.

So sorry you're all going through such a hard time, and don't listen to anyone saying you're involving yourself too much! If your spouse is about to lose a parent what are you supposed to do, fuck off to the cinema and leave them to it?

amoobaa · 14/11/2023 18:47

Whilst you’re trying very hard to do the right thing. It needs to come from your husband, absolutely not from someone you know they don’t like.

Even if they’re in the wrong (we don’t know why there are negative feelings between you), it will only further their distress to hear such difficult news from someone they don’t have a good relationship with.

If they are in denial and they don’t like you, then anything you say will be the perfect thing to focus on and you will become a scapegoat… all the while allowing the denial to keep going. If she doesn’t want to face the truth then your involvement will likely mean she focuses on her negative feelings towards you, ignoring what you have say.

That would not be in the best interests of your FIL.

It needs to come from someone they have a good relationship with. Does your husband have a good relationship with his sister?

If he is really struggling and has asked for your help wording it then fair enough- you could help him write it but he needs to send it, signed only from him.

rainbowunicorn · 14/11/2023 18:49

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Nopenopenopenopenopenope · 14/11/2023 18:51

All I can say is don't use euphemisms. You can be kind and speak plainly. Tell them pretty much what you've said in this post and perhaps emphasise that it would be pertinent to visit should they wish to do so.

What they do with the information is up to them.

Pleaseletitbebedtime · 14/11/2023 18:57

It’s definitely not your place. I would get DH to either as the medical team or suggest to the rest of the family what they expect will happen next.

YeahIsaidit · 14/11/2023 18:59

ilovemyspace · 14/11/2023 18:44

I'm not sure why people are insisting that it's nothing to do with you and it's all down to your husband?
You both have POA and presumably you want to work together and support each other at this time ..........

I asked if they did actually both have PoA or if it was just DH... It could be an assumed default position

HoHoHoliday · 14/11/2023 19:01

A group chat message is a crappy way to do this. Even if you send the same message separately to each of them, that's better than sending one group message - this is not "chat".
If SIL and a BIL do not like you then they are probably not going to take a message from you seriously either.
Ideally, your DH, their brother, will phone them to let them know direct. Failing that, a message from DH to each of them.
Yes you are also power of attorney, but DH is their brother.

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