AIBU to not know what to say when people ask “How is she?”

[hyacinthwannabe]

My mother has advanced Vascular Dementia. She is at home with support from Carers and her children. She is bed bound and no longer speaking or moving. Her bowels and kidneys have slowed down and she is barely eating or drinking. Her speech has stopped and she’s essentially just lying there. She has been like this for a few weeks now. Then this decline started we thought she was dying. However she seems to be on a plateau now. Lots of people have asked me how she is and I don’t know what to say. We are essentially waiting on her to pass away. It’s very very difficult. I met a friend today who asked how she was. I said she seems comfortable but really she’s stopped eating and drinking etc and we are just keeping her comfortable. She was appalled, made me feel like shit really, she kept asking me was there nothing I could do and how she hates to think of her just lying there.

what should I have said? I don’t know how to respond to this question. I’ve had to emotionally detach myself from this a bit to cope and I feel I’ve lost the grasp of what people want to know.

I’d just say she’s nearing the end. And then change the subject.

It’s not your fault, people often don’t realise that’s just how it is, medicine can only go so far. It can be shocking to hear but that’s reality.

I want to say. She’s dying slowly but with dignity. Bye!

Husband says not to. Fuck it’s hard.

'as well as can be expected given the circumstances' that's what I'd say.

And your friend is an idiot! Does she think you're sitting on the cure for vascular dementia?! Of course there isn't anything you can do!

Your friend is a dick.
Sorry for what you are going through.

I'm so sorry you are going through this.
Its terrible and I too understand the 'waiting'. What you said about making her comfortable is what I too would have said. Saying she is having end of life care is also true.

This 'friend' is not a friend at all and very rude!

This ++

Sorry for your situation. People have no appreciation of how hard this is unless they have experienced it

Your “friend” is insensitive, crass and possesses the empathy and emotional intelligence of a brick.

What you said was perfectly fine. I’ve used words like “declining but comfortable” about a similar situation with a relative - fortunately most people were asking to be supportive and managed to grasp what I was implying without needing details or suggesting I was somehow not doing something I should have been.

I have had somewhat similar situations, sorry to hear you are dealing with this and can't believe your friend said anything other than 'sorry to hear that, that sounds really hard, can I do anything to support you' or words to that effect.

Phrases that you might find helpful if you don't feel able to say 'dying'
(Though there's no reason you shouldn't say that)
'She's on end of life/palliative care now'
'She's not going to be with us much longer'
'The doctors can't do any more so they're keeping her comfortable'

When I had similar with my dad, I'd just say "he's getting close to the end now, all we can do is keep him as comfortable as possible"
If anyone questioned that, "can't they do anything?" Etc, I'd say "The doctors are very certain and we're following their advice".

As per Trekbar or

"She is being well cared for but dying"

And exactly nothing more.

If the next words are not supportive turn your back and walk away.

Some people are clueless and some are igorantly nosy you dont have to be polite to either type.

You and your family are going through a rough time and your mums body will do what it will do.

That woman has no idea what it takes to manage your mums dementia let alone her decline.

Wishing you and your family all the best.
🌻🌻

"She's as comfortable as possible" should be enough.

"and is on end-of-life care." for others...

dim-wits might need "there is nothing more that can be done."

💐

Sorry what what you are going through, and that your "friend" is such a dick.

Agree something like "she's comfortable but not much can be done now" could work.

she kept asking me was there nothing I could do and how she hates to think of her just lying there.

She's upset by the reality and wanted you to make her feel better. It's common enough but it's unfair, and very bad manners.

I don't feel you did anything 'wrong' by describing the situation. We need to talk and have no obligation to sugar-coat it. Your friend's a bit of a twit.

A reasonable reply to nonsense like this is "Yes, it is upsetting. Thanks for caring."

My mum died recently with vascular dementia. It's mercifully fast and, in her case, was comfortable and pain free. Wishing your mother a similarly graceful exit, and peaceful healing for you.

So sorry you are getting these unhelpful questions at a difficult time. My dm has vascular dementia (not so advanced) and so fair, friends have responded sensitively. I still find it hard to respond without getting emotional and try not to give details, just say she's on an even keel or similar.

PP have given good ideas for responses. Something like 'There's nothing more we can do, but we're keeping her as comfortable as possible'. It sounds like a good idea to have some stock responses ready if that helps you feel detached.

Your ‘friend’ can get to fuck quite honestly. When my mum was in that position, I just said she’s comfortable/it’s a matter of time and changed the subject. There’s little you can say really, and literally nothing you can do, and most people know that and are sympathetic.

So sorry OP, it's very hard - I lost my dad this time last year, and yes we were 'waiting' at the end, too.

You said you wanted to say "She’s dying slowly but with dignity" - and your DH said not to. Why not? That seems a perfectly OK thing to say tbh. I don't understand the relucntance to name what's happening.

Your 'friend' was, however, awful. What a stupid, hurtful thing to say. I'm so sorry x

So sorry to hear about your Mum! I agree with others that it's fine to say things like 'she's struggling' or 'its very difficult for everyone at the moment' or 'we are trying to keep her as comfortable as possible'. You don't owe anyone any more than that.

With regard to your friend, again while I agree it's very rude and unkind to have made you feel bad, I do also think it's very common for people to have poor to no understanding of what end of life can look like especially for the elderly. It's so absolutely ingrained into us that the right and most important thing to do when caring for someone who is unwell is to make sure they eat and drink, that people are often horrified at the idea of someone basically stopping both entirely for prolonged periods. I guess people are also applying their own experiences of how awful it feels to not eat and drink enough yourself to a sick/dying person without taking into account the physiological changes that make food/water much less necessary.

In my own family I've had relatives pushing for very elderly/ sick and fragile family members to be admitted to hospital for IV fluids and PEG feeding, even against the person's previously expressed clear wishes and very clear medical evidence this is futile/unnecessary, because of a misguided idea that this will make the person more comfortable or delay the end of their life. I've even had relatives accusing care home staff of being uncaring and trying to bump off relatives because they aren't confirming to their ideas of what should be being done (often based on dubious idea garnered from the internet or TV rather than any real clinical experience or knowledge). So what I'm saying is that this kind of ignorance/ lazy opinions is not uncommon. People also quite often feel the default best position is action and activity, and take the idea they always need to 'fight' on behalf of their loved ones (fight what I don't know, the doctors, the disease, the inevitable fact of universal mortality, all seem futile to me). Personally I couldn't disagree more this attitude but it is out there so again I wouldn't take your friend's comments personally and definitely not feel you're doing the wrong thing by your Mum at all

I hope some of the very sensible suggestions PPs have made are helpful, OP. It's so difficult being in that situation, without people being so crass and intrusive when you're struggling to deal with everything else.
I hope your mum is as comfortable as possible, and you're getting help and support from the carers and those close to you.

Some people are either grossly insensitive, grossly nosy, or both.
My mother took her own life. She was 83.

At her funeral, l was questioned (quite forcefully, in some cases) by several family members (not close ones, cousins at best, the sort you only see at weddings and funerals, and who had never been near, or seen me nor my mother in years) "Did she have cancer?" "Had she been ill?"

Only two of my closest relatives (cousins who both l and my mam were very close to, one had actually informed me that my mam had died as l lived away) knew what had actually happened.
My mam was almost paranoid about 'what people thought' so l wanted to keep things quiet in that respect, for as long as possible, for my cousins' sake at least. They lived near my mam, l didn't.

Some people really don't consider (or, indeed, care) about what kind of effect this sort of intrusion has on the family members who are dealing with the situation. There seems to be a 'need to know' or 'offering unwarranted and inappropriate advice' culture and it's totally unnecessary and hurtful.

Yes unfortunately with these tactless people I would advise giving as cursory information as possible. Unfortunately you don’t always know who is going to react like this in advance.

It really is the height of arrogance to assume you know what’s best for someone in the last weeks of their life; better than their own family or better than themselves in some instances.

I am sorry you are having to deal with this op. It is the last thing you need and very upsetting.

Without wishing to be one of the people who gives unsolicited advice; I found With The End In Mind by Kathryn Mannix (sp?) a very helpful book.

Am in exactly the same situation with my Dad - I think your response is perfect!! Your “friend” sounds like an insensitive arse tbh. I understand it can be a difficult thing to empathise with if you haven’t been through it, but ffs, she should at least try!