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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

AngelAurora · 14/11/2023 19:02

It's not your responsibility to do this, the GP should speak to them, stay out of it.

Stroopwaffels · 14/11/2023 19:02

@makesmestronger I know exactly what you're going through at the moment, my dad was in a very similar situation this time last year with dementia, and catheterised after an operation. He pulled the catheter out about three times and caused a lot of trauma. Eventually got an infection which turned into sepsis as a direct consequence of the catheter-pulling and died quite quickly.

I agree with not using euphemisms. Your FIL is quite seriously unwell and the fact he is refusing to eat and drink is not a good sign. I might post something along the lines of "FIL is very unwell, and I would suggest if you want to see him, you do it in the next few days".

NiceUnusualDifferent · 14/11/2023 19:03

I'm.sure they know. No need to point out they need to come now. I'm sure they can decide that for themselves

HoHoHoliday · 14/11/2023 19:04

Meant to add suggested wording:

I want to let you know the extent of Dad's condition. He has deteriorated quickly and extensively. The doctors have made it clear to us that he does not have long left, only up to 6 months but probably less. He can't use his phone anymore.
I just want to make sure you know the current situation so that you can make arrangements to visit him if you want to.

Ffsnotaconference · 14/11/2023 19:05

As some of them don't like you, your dh must message them.

Many of the above suggestions are good. But it should come from your husband

Bluetrews25 · 14/11/2023 19:05

Send @54isanopendoor 's message
Saying if you want to see him get on a plane now implies that he might fade away this week. That's probably not the case.
When the medics say 'severely frail' they don't necessarily equate that to your googled shelf life. So that may not be accurate.

What you could do as POAs is agree with the home and GP about avoiding hospital admissions going forwards, as these are probably only going to distress him and give little benefit. He can still be treated at home with antibiotics etc.
There comes a time when it's kind to let someone go. The medics/GP will guide you.
Families need to be kind, and realistic.

It's a tough stage to navigate.

AngelAurora · 14/11/2023 19:06

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Who you calling an idiot? Just because others have a different experience or opinion, does not make them an idiot.

TeaGinandFags · 14/11/2023 19:10

This is not your job but hubby's.

What good can come of telling someone sho doesn't like you something she doesn't want to hear? TBH she knows and will only use your telling her as an excuse to be horrible.

DH needs to be blunt and to the point. She needs to grow up and face facts.
You neef to step bsck. You're doing enough.

Original poster

makesmestronger · 14/11/2023 19:11

Thank you for your replies, I think you are right the message needs to come from DH, but I need to help him with the wording - I lost my Dad a few years ago and its a hell of a roller coaster ride to see them in hospital, then sitting up and talking to you, then take a turn for the worse.

DH is also struggling with his feelings too and I want to support him to find the right words so the family are informed and can they can make an informed decision to visit FIL or not.

Unfortunately the family are fractured, some siblings talk to some siblings but not one of them talk to all of their brothers or sister - just to add to the challenge

OP posts:

Whitepeacelily · 14/11/2023 19:15

It would be better coming from your DH

Aprilx · 14/11/2023 19:19

I cannot imagine a world in which I would be taking centre stage in this life event. You need to take a step back and let your husband and his siblings deal with this. I am actually shocked at your post.

Hydrangeasneedtrimming · 14/11/2023 19:20

This is not your job to tell them, its DH's job and especially, as you say, they don't like you. Why does it have to be you?

LimeCheesecake · 14/11/2023 19:20

I think @54isanopendoor message is pretty good. Perhaps write it out and suggest DH tweaks it so it sounds like him and he sends it (or if he can’t cope at all, hands you his phone so you can send it from him, with him having final approval before you hit send).

dementia is a absolute bastard isn’t it? Watching a parent decline fast as well here and it’s so shit (Praying my body goes before my mind.)

ChristieEve · 14/11/2023 19:22

This is DEFINITELY an update for your DP to share, not you. I have good relations with my in-laws and DH's siblings but it would still ruffle feathers for an "end of life" message to come from me and not him.

lovescats3 · 14/11/2023 19:23

This is for your husband to do especially as his siblings don't like you

daliesque · 14/11/2023 19:37

All the sorrys and unfortunatelys in the world are not going to make the message easier to read. I'd say keep it brief and factual and truthful. You don't really know how long he has left, but you do know that he's on an EOL pathway.

AbondonedThemePark · 14/11/2023 19:38

OP, The Clinical Frailty Index states that people in category 7 Severely Frail aren't at a high risk of dying in the next six months, not that they are. My mum's in that category and she definitely isn't expected to die in the near future (although of course she's very old, has dementia, and could die at any time).

So I definitely wouldn't be telling relatives anything about him going to die soon!!! Leave it entirely up to your husband, and let him be guided by clinicians not googling.

If it was imminent they would have told your husband. When my dad was at end of life, the doctor said he had a few weeks left, and he died a couple of weeks after that. If no one has said anything, it would be very wrong to make assumptions. Perhaps his condition will deteriorate over the next few days or weeks, but doctors will keep your husband fully informed if that's the case.

momtoboys · 14/11/2023 19:38

This is a powder keg for you and your husbands family. I would step back and let the siblings work it out between themselves.

Whataretheodds · 14/11/2023 19:38

I don't know why people are jumping on you. It sounds as though you are supporting your DH (remembering having been in a similar position yourself) by taking some of the mental load and it sounds as though you know this needs to come from him.

Good suggested messages from @54isanopendoor et al. Agree don't use euphemisms.

Unless your DH wants to coordinate visits I'd suggest including details of visiting logistics - who do they need to contact/website with visiting hours etc. Or, your DH asks people to let him know if / when they plan to visit so he can keep them updated if the situation changes.

All the very best. Your DH will appreciate you not just fucking off to the cinema!

Itsnotallaboutyoulikeyouthink · 14/11/2023 19:39

No you stick to the facts . You have looked it up that he has up to 6 months to live that therefore is not info you should be repeating unless someone medical told you direct. And you really can’t have that conversation on a WhatsApp group. I had to tell someone my late husband had been diagnosed with a terminal illness and only had a year to live. That person was in prison at the time!

housethatbuiltme · 14/11/2023 19:44

The messenger will get shot any which way.

Someone was mad at me for 'scaring' them when when I said a family member was 'entering congestive heart failure and it could be fatal'.

They where mad at me because the death certificate didn't say 'heart attack' (it was fluid build up in the lungs, I also NEVER said heart attack) so why did I mention the heart (because that was what was the underlying condition).

There's no way to phrase it better because phrasing isn't the issue... sadness at the reality is.

Lwrenagain · 14/11/2023 19:44

DFiL's GP could contact them and talk to them directly if you requested. I'd most definitely not engage more than you're required to with DHs family because you're in the firing line for abuse.
I've worked in end of life care and some families react very badly to the whole situation, lashing out at anyone they can, you'd sadly be a prime target.
I'm sorry you're in this position, losing a loved one to dementia is incredibly cruel. X

WaWaWaWaaaaaa · 14/11/2023 19:45

I wouldnt mention the 6 months thing, just that he is deteriorating. It shouldn't come across as some big announcement. I also wouldn't say anything that sounds like you think they 'should' do something. And yes, the message should not come from you.

AbondonedThemePark · 14/11/2023 19:46

Here's the Clinical Frailty Scale.

End of Life Message - please help me with wording

grumpycow1 · 14/11/2023 19:47

I know you’re trying to help your DH, but it’s coming across very overbearing. You may be close but it’s his dad at the end of the day. Has your DH specifically asked you to write a message? If not I’d suggest you stand back and let him deal with it. If he has, maybe ask him what he wants to write and go from there?

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