Use of sedation for end stage alzheimers patient

Waldo

Registered User
Dec 28, 2012
11
0
Hi everyone,
My mum is aged 68 and is unfortunately suffering from end stage Alzheimer's. She is in a wonderful nursing home nearby and I visit her as often as possible. Back in February/March time we thought we were losing her as she stopped eating and drinking, but she rallied round and is now surviving on protein drinks and whatever bit of food they can get her to eat.
This last couple of weeks she has started to scream and rant and cry almost constantly. It is very distressing to visit when she is like this and I have stopped taking my children with me to visit as they find it too upsetting. I asked one of her carers whether they could give her something to calm her down and was advised that she already has some meds that are supposed to do this. This was last week. My concern is that she's still like this a week on and she just looks so sad and scared. I feel it isn't fair for her to be existing like this.
Mum is bed bound, double incontinent, doesn't recognise any of her family, cannot communicate and is basically a living shell.
So, my question is whether any of you have experience with sedation being used for an end stage Alzheimer's sufferer..? My sisters and I are hoping to discuss this option with the nursing home, but I'd like to be armed with extra info if possible. The way we see it is that she would hopefully be more comfortable and at the end of the day it would not make her quality of life any worse.
Thanks in advance.
Waldo xx
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
The first thing to do, in my opinion, is to meet the carehome GP. Ideally on a visit to the home - and when your mum is being visited.

If you have already done this, I suggest you see the GP again and ask if your mum can be re-assessed. I had to explain, loudly and clearly, in front of the carehome manager, and all the staff - and the GPs - that we wanted my mum kept free of all distress. In the UK we can be a bit conservative about relieving distress. Doctors can be afraid of being accused of shortening life.

I made it clear we thought quality of life was what mattered.

The GP should have a lot of experience of helping people like your mum have peaceful days at the end stage of the disease. And the carehome manager should too.
 

ROSEANN

Registered User
Oct 1, 2006
909
0
75
staffordshire
Dear Waldo
Your post could be about my husband, he has for the last couple of months been suffering with bowel problems and in and out of hospital, the last time he was so ill we did not think he would make it .
The GP told me it is only a matter of time for him and so I told him I wanted him to be kept as painfree and comfortable as possible as the bowel problem can be very painful.
He already has a mixture of medication that are supposed to calm him but like your mum is constantly shouting out and in distress,, the doctor prescribed diamorphine for when the pain is bad but trying to get the home to give it to him is a constant battle.
so now I have to go back to the doctor to ask him to have a word with the home.

All I want is for my husband to have a peaceful passing and that is not too much to ask for I`m sure
All the best
Roseann x
 

Waldo

Registered User
Dec 28, 2012
11
0
Thank you both for your replies.

Once my sister returns from her holiday this weekend we will arrange to have a meeting with mums doctor. My other sister lives overseas but I have already chatted to her about the possibility of extra medications and she supports this fully.

I have just read another post regarding palliative care and the phrase "calm, pain-free and comfortable" cropped up. This is exactly what we want for mum.

We assume that she is not in any pain but as she cannot communicate we cannot be sure. It is just heartbreaking to see her so distressed each time I visit.

Much love,
Waldo xx
 

angelface

Registered User
Oct 8, 2011
1,085
0
london
Is there a local hospice that could advise on palliative care? I don't mean move your mum there - just for advice.
 

Waldo

Registered User
Dec 28, 2012
11
0
Hi, well the doctor has assessed mum and he thinks that the contractures in her legs are causing her pain. He has prescribed some pain relief and muscle relaxants and we'll see how she gets on. The new meds may well cause drowsiness which isn't ideal from a feeding/swallowing point of view but as I stated before, we just want her to be pain-free and calm. Fingers crossed..!
Love to all,
Waldo
 

Mamsgirl

Registered User
Jun 2, 2013
635
0
Melbourne, Australia
Well done you for speaking up and getting your Mum some relief.

Three years ago when my father was dying he was very distressed but wasn't given anything to ease him because he said he wasn't in pain. After a day of talking to the CH GP and nursing staff it became clear they would let him die writhing in fear because their concern was only to relieve pain.

Well, I was such a pain in the neck the palliative care service was called out. I remember going on about if he were a prisoner of war it would be against the Geneva Convention to leave him in that state (I know, a wee bit dramatic but I was the one awake all day and night, so they could just deal with it :rolleyes:) I needn't have worried, as I was ranting the doctor was writing up orders for help with what he said was clearly Dad's existential angst, and said such suffering was every bit as important to relive as physical pain.

Dad left this earth without fear and suffering, and I learned to be the sort of squeaky wheel that gives a headache ;)