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.

This post is spot on and beautifully expressed.

I am sorry you had that experience katseyes7 and you should be really proud how you protected your mother’s privacy.

I cannot stand how some people think they have a right to know other people’s business.

I think you responded with the right thing. There's no need to sugar coat it for people who don't want to hear the truth and your friend shouldn't have acted that way. When my dad had early onset dementia I found people didn't know how to respond when I told them and I think the default is for them to suggest ways to make it better, when really the only thing to do is accept what's happening and keep your mum as comfortable as possible.

I saved the line 'she's doing as well as can be expected' for when people asked how my mum was doing after my dad died - I'm not sure that would have been the truth for my dad before the end and it's not on you to try and make everyone else feel more comfortable about it.

@hyacinthwannabe 'friend' you say?

I'm usually very polite and don't like to confront people head on, but in the situation you describe I would be forthright and would have said

'Excuse me, but are you seriously suggesting that this sits well with me. About my own mother? You actually think that her medical professionals haven't worked to do the very best they can for her and that I'm negligent?

Do you have any idea how upsetting that is?'

and then I'd have walked off and left her to mull over what I'd said.

Some people have absolutely no idea and no sensitivity. I'm sorry for the situation and what you're going through. I understand. I've been there and it's so, so hard.

I was going to suggest - 'as well as can be expected given the circumstances' but people can then get shocked and not always act well when the person dies - so above is better.

That's an awful response by your friend!!! How dare she?!? What you said was a perfectly good, honest, straightfoward answer. You'll learn not to share much with this particular friend.

I find in general people are very naive and ill educated about illness, disease, long term treatment and life limiting illness

Its human nature to want to try to control but people think that anything can be fixes nowadays, any illness, any condition, they think surely something else can happen. They find it hard to consider that there are disorders that kill you and you'll die from and nothing can be done but to keep the patient comfortable or disoders that dont really improve, you manage the symptoms but nothing more.

OP, your friend is a pillock who has absolutely no idea what is going on. And also no understanding of basic human biology.

Yes, we had this with mum with people trying to force her to eat. And i admit i was a bit like this myself at the beginning of her illness where it looked like she was wasting away in front of my eyes. After nearly having a breakdown it ended up with having a heart to heart with her doctor while doing her RESPECT form where she very kindly pointed out to me that mum wasn't dying because she wasn't eating, she wasn't eating because she was dying.
I had never thought of it that way before and changed the guilt that i was feeling.
And also gave me something to say to the nursing home worker who tried to force feed her a build up drink while she was actively dying :(

Tbh although I know what dementia can mean, I didn't realise it was the biggest cause of death. I always thought that people become vulnerable and died of pneumonia etc. It was after seeing the statistics on a local news channel and Googling, I found out that dementia, itself was a killer.
When my DH was on the pathway to death and even in the weeks before, I was honest and said that he was dying and it was only a matter of time.

Thank you all. I agree she’s been massively insensitive here. I don’t think she realised it.

I find the most common result when I say she’s on palliative care pathway now that they ask would she be better in a home
or a hospice.

I just don’t want to discuss it with them. I’m dealing with this the only way I can and I know i
soumd a bit unfeeling when I discuss it but I have to or I’ll fall apart.

I hope your friend was just displaying sympathy in a misplaced way. Rather than accusing you of somehow neglecting her. More like 'if only there was a cure or something for this horrible illness/ I can't believe how badly it affects people.' And it came across kind of crass.

Of course there's nothing much you can do for someone in that position. Other than quite rightly keep them as comfortable as possible.

I'm so sorry for what you're going through. And rest assured you're doing everything you can for your dear mum. X

I think that's a great response. I know different people will have different intentions, but if I was asking something like that it would be to try to gauge how bad the situation was, while trying to work out what might be helpful to say or do. If someone is sadly very close to the end those words or that help might look different to if things aren't amazing but everyone's just cracking on with a sad situation.
Between my own denial and my friends all being very optimistic in their support of me, I didn't really get a chance to say to anyone I think my mum might die soon and I'm actually not coping brilliantly. By saying something like this to a friend the bluntness might be incredibly helpful for you both. And if anyone does react badly then at least you know they are not someone you can rely on right now.
I'm sorry you're going through this. Try not to spend time worrying about other people and social niceties at the moment, just focus all of your energy on you, your mum and your family.

Why does he think you shouldn't tell the truth? She's your mother, and there's no reason you shouldn't.

Sorry you are going through this OP. I would just tell people she’s receiving end of life care. If they ask for specifics just say you’d rather not discuss her personal medical stuff.

Sometimes when people haven't been through it they simply don't get it

Your friend doesn't understand dying and maybe thinks every experience is the same.
And I don't think I could have been polite to her!

I’d just say “she’s comfortable, thanks”

I think in challenging and emotive situations it is often worth having a standard line that you have ready that gives suitable info but shuts down further lines of well meaning enquiries you don’t want. Genuinely worth practising in the mirror saying out loud as makes it much easier to half auto respond in the moment.

So perhaps you might say something like
“she is declining but comfortable, it is a difficult time for all of us so I’d rather not go into details”.

Remember it's also ok to say 'I don't want to talk about it'

I think your friend is just ignorant as she hasn’t experienced someone at end of life before. I don’t think she’s a dick as pp have said. She doesn’t understand end of life.

I'm sorry for what you are going through OP. It's your friend's response that's weird, not yours. I don't see what was wrong with what your husband told you not to say either, why doesn't he think you should say that?

In future, after answering with whatever sentence works for you, could you head off further questions with something like "oh we've been over it a lot with the medical team and this is the best option. Now, I'd love to talk about something else, how are you?' or similar.

Clovermountain443
Thank you so much for your very kind words, Clover.

I knew the truth would come out sooner or later (a neighbour had found my mam), and one of my cousins worked in the local supermarket, l felt bad for her, it being such a public place.
I live 100 miles away, so it wasn't an issue for me, but that concerned me.
But l tried to hold off as long as possible, so l asked for the inquest to be held in private, even though none of us could attend, to alleviate the risk of one of the local newspaper journalists potentially being there, and it ending up in the press.
Which was probably highly unlikely, but not impossible.
My cousin had wanted to attend the inquest, so had l, but we agreed for privacy because of the circumstances.

Again, I think it is very touching that you honoured your mother by being so sensitive to what she wanted, and being so unselfish about your own wishes.

You see so many people in this situation over-riding the patient’s wishes when they are still alive, also very often once they have died too. I find it so disrespectful.

And people need to learn that they aren’t owed every detail about someone elses’s life, If they had wanted you to know, they would have told you! If you don’t know something, sometimes it’s best to leave questions unsaid out of respect for the patient and the family. Your wish to know does not come above their right to privacy and peace!

.

Agreed.