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Withdrawing treatment for end stage Alzheimer's Dad (upsetting)

(9 Posts)
Uglykidflo Mon 13-Feb-17 08:29:15

My Dad has had Alzheimer's for the last 10 years and is now at end stage. He has been bedridden (in a fantastic nursing home) for a year, no longer speaks or makes any sounds , is fed and given fluids by carers and spends 95% of the time sleeping. In the past 2 months he has had pneumonia twice. on Thursday I was called late at night by the doctor, who said he was very poorly and asked if I wanted him to go to hospital. I have already spoken with my family and we decided that we didn't want to put Dad through this so I said no.

Back story, Dad saw his father go through Alzheimer's about 30 years ago, very traumatic and he always used to say that he didn't want to or wouldn't want anyone else to go through what he called "the utter humiliation of being cared for like that". Also, around 18 months ago when he was still mobile and speaking but he hugged me and said "I've had enough I really have".

Anyway, Dad had a very long and distressing night where his breathing switched between being very laboured and rattling to being very shallow to the point that I thought he had stopped breathing. In the morning the nurse told me that his obs had deteriorated and it was time to call my family. I did and my sister and aunt duly arrived.

We spent the day with Dad and although he hadn't been given any fluids or food during this time he appeared to pick up and was a lot more comfortable.

So, the nurse asked me today if we wanted the doctor to prescribe anti biotics for Dad to help clear up the infection. She said that she thought the doctor would prescribe them but wanted to know how the family felt. She said that Dad would continue to get infections and go through this and it could continue for a few more months.

Now this is the upsetting part, I'm not sure that clearing up the infection with antibiotics is in Dads best interests, if he is just going to end up in the same situation again. Plus I know he would be absolutely horrified at the situation that he is in.

So the doctor duly came and said they wanted to give him antibiotics which he is now having.

So, my question is, can the doctor continue to insist on giving my Dad antibiotics that may help him to live a little bit longer or can we ask that they stop this and,as long as he is not in pain then just let whatever happens happen.

Of course I know that the drugs may not even touch his infection and he also may fight it off on his own. But I am worrying myself silly thinking about what Dad would want but als struggling with the moral responsibility of it all but then I don't know if the doctors will take our thoughts in to consideration or even that what I am thinking is acceptable.

Sorry for the long post but I think writing it down this far has helped.

Needmoresleep Mon 13-Feb-17 10:09:13

I am so sorry. This is the bit on my mother's Alzheimers journey I am dreading. She already says she has had enough, and her priest confirms it. I am a bit weird and use my late father as a reference point. How would he advise me? When we reach this point I am sure he would say they wanted to be reunited.

Your post suggests you know what the answer is. However it does not make it any easier.

flowers

janinlondon Mon 13-Feb-17 10:28:22

This happened to us about six months ago. Dad had made his wishes clear (and even had a living will, stating he did not want certain interventions, which made it easier for us). We chose to let him go, as he had wanted us to. Six months on, none of us think this was the wrong thing to do. I know he would have approved. I am sorry you are in this place, but wanted to reassure you from further down the line that its not something you will suddenly regret later, if your Dad has already said he has had enough. Thinking of you.

ColdFeetinWinter Mon 13-Feb-17 10:33:05

ugly. It is you who loves your father, knows your father and wants the right thing for him. NOT the Dr.

You're right to have that discussion with the Dr who I hope will receive it with grace and understanding.

VintagePerfumista Mon 13-Feb-17 17:57:42

flowers Ugly. Many of us are on this journey, you are a bit ahead of us.

Have the talk with the doctor, and I hope you and your dad can find some peace.

Gwilt160981 Mon 13-Feb-17 18:03:46

My grandmother head dementia and all it was at the end was just show he gentle care. Sit talk, hold her hand and Offer mouthcare. It is sad and upsetting and soul destroying. (My parents passed away before my grandmother) look after yourself

whataboutbob Mon 13-Feb-17 21:33:51

I was there a few weeks ago, Dad was not quite end stages but he got pneumonia, they sent him to hospital who treated it with antibiotics but he still died because he got septicaemia (the bacteria got into his blood) then organ failure.
It is absolutely not wrong or bad to wish for this to be over. Although I was very sad part of me was relieved when Dad died and avoided the final stages. Unfortunately my brother was deep in denial and just wanted Dad to live and still thought he could get better!
If he recovers you could ask the care home not to send him in to hospital if this happens again. But I agree, having to make these decisions is morally uncomfortable and exhausting and that's one of the hardest things. In most other diseases you don't have to because the person does it for themself.

Uglykidflo Tue 14-Feb-17 08:24:54

Thank you everyone for your support. I've been thinking about it loads and I know that this is the right thing to do and is in my dads best interests. I just hope the doctors and the care home can accept this and let Dad have some peace.

Sending thoughts to everyone going through this situation at the minute, it is such a difficult and heartbreaking disease.

Yoksha Wed 15-Feb-17 18:52:19

OP,

Just sending you a rather unmunsnetty hug (((((hug))))).

This was our family 4yrs ago after 8yrs of a sliding scale of Alzhiemers. Our mum had DNR & no antibiotics intervention at the end. Our brother sadly but confidently requested this be put on her file.

With you in spirit. All my grieving was done when our mum went through this. I felt I'd lost my mum when she stopped being aware of who I was.

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