To wonder how much longer she has left to live?

[DaffodilQuery]

A very dear friend of mine has been ill with rare and complicated combination of painful, distressing and life-limiting illnesses since her teens - and has been declining steadily and then sharply for the past 10 years. Today she told me that she is being fast-tracked for home adaptations, and has been offered inpatient hospice respite to help her manage her pain.

Does anyone know - can I infer from this anything about how much longer the doctors think she has left? She is so young for all this, so very young.

Well if they are adapting her house then they are expecting her to have months rather than days or weeks I would guess.

True. But she had been at the bottom of the waiting list for years. Such a sudden shift

I would say to get Day hospice and home adaptations it’s months you are looking at
Sorry

This happened to a friend of mine. The inpatient hospice care was great as they are real experts in pain management. She lived a couple of years once she reached this stage but she was much more limited in what she could do.
It is the beginning of the final phase. Nobody can say how long it will be as a bad chest or kidney infection can hit someone in poor health very hard.
I am sorry

Home adaptations are often carried out when there is only approx 6 months left for someone to live.
I don't know why but it is very cruel to make epople wait and wait.

I am sorry for your friend.

Ultimately it doesn't matter.

You treat her the same as you always have.

You prepare for the worst and hope for the best

You listen and you talk

Technically, hospices are for anyone accessing palliative care - and palliative care is not the same as end of life care. People can access palliative care for years; it's for anyone with a life limiting condition, at any stage of that condition, to help them cope and live as well as they can.

It could just be with funding restrictions she's finally deemed to be suffering enough to access these services, rather than that she's receiving end of life care.

Very sorry to hear that
Like others I would interpret it as months, but you never really know - doctors can get it wrong and a lot people can surpass what is expected. Just try and spend as much time with her as you can and support her.

Thank you all. I do still intend to do absolutely whatever I can for her.

katalavenete

Raises a very fair point and I hope she is right

"It could just be with funding restrictions she's finally deemed to be suffering enough to access these services, rather than that she's receiving end of life care"

Certainly, people with rare conditions get a bum deal out of funding algorithms - she's said herself that she'd get more care if cancer were her main issue.

But really though, there is no denying that she is now extremely ill

People can live for months or years when they get to this stage. It's a case of "how long is a piece of string". Nobody can predict the time line , especially when several illnesses are involved.

I understand that, which is why I realise that IABU really even in asking the question. What's behind it TBH is that I'm considering taking the family abroad for six months in the near future. And yet, I do want to be able to be there for my friend - and of course her family - in the final months.

In palliative care, when asked this question, we would usually say that if a person is deteriorating over weeks (i.e. they were worse this week than last week, and then worse again the next week then the week before) then they are likely to be the last weeks of their life. If last month was worse then this month and then next month worse than this month, then it's likely to be month. Similar situation for if each day is worse than the one before, or each fortnight, or each hour. Hope that is useful to you. Thinking of you and your friend.

I'm sorry you're facing this.

Honestly, the thought of losing my best friend fills me with utter despair, so I can understand your fear.

However, rather than making guesses, talk to your friend. Tell her you worry about her, and what do all the new changes (home adaptations/hospice etc) really mean? How can you help her? Hear the truth from her personally, and I think it'll ease your mind. Plus, if it's worse case scenario, you've got time to realistically prepare yourself, and enjoy the time she has left, rather than worrying "what if/when?"

Talk to her.

Usually, I would talk to her. At the moment, though, she's finding the denial quite helpful - making plans, for example, for a 2020 walking holiday that even if still alive she will no way manage. I don't think it's my place to confront her with truths she doesn't want to face. Deep down, I know that she knows and she knows that I know, though.