Info needed for friend about her dad, Alzheimers, lost swallow response, no food (drip only) for a fortnight and hospital won't tell her anything.

[Peachy]

Thread title says it all really, she's alone with him (mum died over a decade ago, sister has mental illness and can't be involved)- he's 81 nad lives in a home, but does recognise her and is lucid except when the glucose and fluid drip runs out. the hospital aren't attemptinng to feed him, and she doen't know what step to take next.

This is my oldest friend and her and her dad have been here for me since I was 11, they've been through enough (mum died in her late thirties from breast cancer) and so I want to help her with as much info as possible.

What does she want?

Does she want him to be PEG fed?

I'm a little surprised that he is lucid and recognises her, generaly by the time the swallow reflex goes in AD, much of the ability to regognise people has already gone.

Is it possible that he has had a stroke and that this is the cause of the sudden loss of the swallow reflex?

Does he have a DNR order in place? Would he want to have a PEG tube fitted to allow him to be fed. What will the quality of his life be if they do this?

I know that sounds like a horribly harsh thing to think about , but if his AD is severe and/or he has some other probelm causing the lack of ability to swallow, is prolonging his life really the best thing for him?

I've had to make this decision for my mother (also has dementia) and she has a DNR order signed. I did it because I know it is what she would have manted.

Peachy

My FIL is in a similar state - the alzheimers' society have an excellent website and a telephone helpline - we have found them to be extremely informative and helpful

get her to ring the ward and ask for a meeting with the doctor to talk about the treatment - problem with asking at visiting times is that the nurses are busy and not able to tell you anything and the doctors are never there at that time

she should ask for a SALT assessment as they deal with swallow reflex - also get onto the PALS officer at the hospital if she doesn't feel she's getting enough info

HTH

There's no DNR order in place, although she'd consider if it became an issue I think. She's very aware of the reality of the situation and I am lucky in that i have a close enough friendship where i can and did be honest about what I felt were the implications of the treatment. He doesn't have a tube in place as he would likely pull it out (does pull out hisn drip) and theya re worried that the tube would then cause pneumonia- but that seems rather a previous concern if they're not offering any chance whatsoever doesn't it?

AA stroke might be a possibility MB- he had a TIA at Christmas actually, and they aven't done any brain scans, i will suggest that thanks (my only experience in this area with someone with PArkinsons, where loss of swallow reflex is common).

will also look up number of Alzheimers Society ta- she doesn't have internet but i can find that out for her.

It sounds to me as if the doctors have decided that doing nothing is the 'best' (or least worst I suppose) option. But your friend needs to be part of the decision making.

Can she make an appointment to talk to the doctor responsible for her father's care?

Obviously patients differ in their progressio of AD. But in my experience (mum has been in a special unit for over 4 years now) the ability to swallow is one of the last things to 'go' for the patients, it is the higher order skills, recognition, memory and language use that go far sooner.

How awful for your friend and her father

I'm sory for your friend's position, it's horrid. Another thing she may want to consider is anti-biotic treatment if her father develops pneumonia, which is a common complication. My mil opted not to have fil treated with a/bs when he was in a similar situation and he slipped away very peacefully.

i am sorry for your friend and for you - its a horrid position to be in. Most posters have said much of what i would say but she does need to think about what she wants out of it and what she thinks he would want. we'd talked to my mum beforehand and knew not to give a/b's for example so she died fairly peacefully in a coma.
can you go with your friend to a meeting with the hospital so you can support her and help her remember whjat she wants to find out? it can be intimidating otherwise, even for otherwise assertive people. talk to them and tell them you will come back at a given time, later that day, tomorrow etc with a decision about what to do next (so dont get pushed into a decision) and involve him as much as possible (while possible obv). hospital social worker might be a help.
good luck and you are being a good friend.