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.

OP have you had a prognosis from his medical team? I ask because I think assuming he has 6 months because of things you’ve read, doesn’t necessarily translate to your FIL - they are guidelines, as opposed to specific to him.

2 years ago, I received a call from the hospital doctor looking after my 83 year old aunt (who has multiple medical needs), telling us she had weeks to live and we should visit within a couple of days. This was mid lockdown and we were allowed to visit In hospital, on compassionate grounds as she was dying. She is still alive, and has been on end of life care for 2 years now, it’s not a great life for her at all, but my point really, is please be absolutely certain that he is only expected to live for around 6 months before messaging other family members.

What a rotten thing to say to the OP, especially given the circumstances.

As PP mentioned, the scale just means he is high risk but not that he actually will pass soon. Has a doctor actually said to you directly that he doesn’t have long left? If not I don’t think you should be telling family members this… it may not even be the case.

If you feel that you are not on good terms with some of the group, then it's probably better if DH does the direct communication and you support him in the background.

I can’t believe OP has decided how many months he has to live on the basis of a MISREAD thing found online and worse still that some PPs are suggesting she mention it or that she should say “make arrangements to see him”. Advising people to make arrangements to see him NOW makes it sound like he’s got only days left!

Not your place OP, simply because you’ve said they don’t like you, so of course such a delicate message shouldn’t come from you.

Most of the suggested wordings that have been offered up are dreadful and inappropriate. There was one that sounded reasonable but I’d still stop short of telling people what they “should” do or what they “might want to think about”. Smh.

It will not go well if you try and say anything due to the dislike in the mix, so don't say a thing.

Your DH can say something but it does not mean it will be taken on board. We can all try and deny the truth when it is not what we want to hear.

Think some of you are being rather harsh. I get the feeling op is trying to help, not take centre stage as some have said.

Maybe it is dh place to do it but she's already said she wants to help him word it.

It isn't rotten, OP has already said that DHs family don't like her, it's odd that she would be given the same autonomy as a direct family member and the prognosis has been decided by googling rather than anything a clinician has said... How is that not jumping the gun and being too involved. Regardless of how DH family feel about her, it's not a message that should come from her at all as others have also said

Can you borrow dh's phone and send the message to the WhatsApp group as him. That way it has more legitimacy, you avoid the shoot the messenger ( as DH is one of them so to speak) but he doesn't have to deal with the thinking ( just listen to the message and agree to it).

Like it or not, sometimes a spouse who's not liked by the family ends up closer to the situation than the family, especially if you, like me, were the person who was the main point of contact for the care home or hospital. Present it in the third person, but the message is: If you want to see x before they die, the next few weeks are likely to be your last chance.

Sorry to see that you've had a lot of harsh, unkind and unhelpful responses here, OP - but that's AIBU for you. This thread might get more supportive and useful answers on another board Elderly Parents or Life-Limiting Illness - maybe ask MNHQ to move it?

Exactly this!

My DF has had three situations where he was possibly EOL and we were told to say goodbye. Doctors tend to err on the side of caution about EOL anyway. Three years after the first of them he is still hanging in a care home he was admitted to 18 months ago.

I'd steer well clear of saying anything.

You also might find the Elderly Parents board helpful.

It is very difficult, I agree that your dh needs to be the one sending messages re your fil, I would ask for a meeting with his dr or nurse and get their opinion. The group message can be their words not your opinion. My mum is very similar to your fil, she is very unwell and yet she is still here, she survives on very little food and fluids. She has been classed as severely frail for over a year, it’s a cruel disease.

It’s not an easy one to send. And even if you got the wording and timing just right, they’d still hold it against you because they don’t particularly like you and will hold you responsible for the substance of the message. They will respond better to a message from your husband.

Shit, I know. But I have always often found the “who” is the most important elements of communication.

@makesmestronger I wouldn't put it as 'they need to get ready to say goodbye.' Severe frailty can be somewhat reversed, and I don't think the six months thing is necessarily right- I mean you could be right but you need to get the facts about your FiL and the outlook for him from his doctors. You could ask the doctors what you should say to family.

Your husband needs to be the one to speak to his family about it.

I would suggest you have a serious conversation with the doctors about what they think, then your DH can relay that info to his family.

This is perfect!

We had a similar situation with my mother, also similar age. Like your family some of us live abroad, including me, and one sibling is very low contact and only communicates with me. Another sibling had POA and she posted regular updates for us on each visit to the care home Fairly factual and not being too alarmist but it flagged the decline. By this stage she didn't recognise anyone, was virtually non verbal, incontinent and only able to walk with help,. We'd agreed with sister that there would be no hospital admissions just 'keep her comfortable" in her bed. So message were like this e.g
"Saw Mum today, she was too tired & weak to get out of bed and quite distressed & upset, so I sat with her for a while chatting until she went back to sleep.
"Hi All, Mum had a good day today, drank some tea and ate a bit of cake though care staff said her weight has dropped a lot to XX as she's refusing to eat much and they struggle to get her to drink fluids too."
"Hi everyone, mum has a chest infection and it isn't responding to antibiotics. She's sleeping a lot and breathing is very laboured. Care home said they are very concerned and will monitor her overnight. I'll let you know how things are in the morning".

Basically all this gave us a picture of what was going on and prepared us for it when she did pass away. She actually got pneumonia three times over about 8 months and every time we thought her time was up but we'd then get a message she'd perked up again. So it's really hard to predict.

@makesmestronger

Please don’t do this. Wait until he’s on palliative measures. If he has seen a palliative consultant, then you should ask them, or the palliative care nurses for help with wording for the conversations that must be had.

I worked in palliative care and used to help the next of kin with wording for their families.

But the time to do that isn’t now. You haven’t been told that he’s got 6 months to live. And severely frail could be that he needs care plans to be implemented so that once he does become palliative, everyone is on the same page!

Once his UTI has cleared, you may find that it’s easier to engage him, since UTI’s make older adults confused anyway.

Also, you can’t tell people this sort of news in a mass text over WhatsApp.

You need to either personalise it for each person, or even better, have what you want to say written down and call them.

Your DH can do this with your support. You also need to make sure that you have the contact details of the treating gerontologist or palliative consultant so that they can call them directly, as they may be in denial.

You need to use chat gpt for this @makesmestronger

i just pasted in your OP and it gave me this:

Family, it's been a challenging time for FIL, and we've witnessed a significant decline in his health. The recent hospital visits have shown that he's facing severe challenges due to his dementia. It's a tough reality, and we should be prepared for what may come. We're here to support each other during this difficult journey.

Then I asked for a little more detail and to focus on the key words etc that you noted and it wrote this:

Dear Family,

I hope this message finds you all as well as can be expected during these challenging times. I wanted to take a moment to share some heartfelt concerns about FIL's current health situation.

Over the past few months, we've witnessed a profound change in FIL's condition. From his once independent and lively self, the grip of dementia has tightened its hold, and it's evident that he's facing a losing battle with this relentless disease. The recent hospital visits, especially the ones in the last couple of weeks, have been eye-opening for us.

It's difficult to see someone we love go through such a rapid decline. FIL's struggle with dementia has taken a toll, and it's heart-wrenching to acknowledge the challenges he faces daily. From his independent living just a few months ago to now grappling with two hospital visits within such a short span, it's clear that his situation is becoming increasingly fragile.

I believe it's important for us, as a family, to face the reality of this situation. The impact of dementia on FIL's well-being is profound, and it's crucial that we start preparing ourselves emotionally for what may lie ahead. It's a difficult conversation to have, but acknowledging the gravity of the situation allows us to better support each other during these trying times.

I understand that distance and individual circumstances make it challenging for everyone to be physically present, but our collective emotional support can make a significant difference. Let's come together, not just for FIL but for each other, as we navigate these uncertain waters.

Sending love and strength to you all.

[Your Name]

Chat GPT literally takes seconds and you can go back and forth with it adding more detail or asking for more or less as needed

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.

YABU. This is absolutely not for a whats app group message. Each relative needs to be called individually and open discussions had. If they still choose to be in denial then there’s not much more you can do. They need to make informed decisions by hearing all the facts.
the group dynamic is irrelevant at this point too.

can you tell the relatives what hospital your FIL is in and give a phone no for the hospital? that way, they can call the ward and get information without having to go through you, if they prefer that

That sounds really hard for you😍two, OP💐

No it isn’t coming off overbearing

WTAF is wrong with half the ppl on this thread. OP has said she wouldn’t be sending it but wants to help DH to word the message appropriately.

It is very clear that a lot of people on here have either never had a loved one at end of life or never supported a partner through the loss of a loved one. Or possibly don’t even have a partner because who would just say
to their partner, who was facing the death of their parent “nowt to do with me love, write your own message”

ffs