If you have a relative with severe dementia.....

[Stonehengecalling]

If they are ill, why do you want them treated to prolong their life?

I’m a HCP who deals with dementia daily. In 20 years I’ve only had 2 families that have asked me not to treat their dementia suffering relative, which has resulted in a speedy death. Everybody else wants me to treat their mute, bed bound, incontinent, peg fed relative to keep them alive a bit longer. I don’t understand why.
I’m going to apologise now as I appreciate this post my upset some people, and that truly isn’t my intention. I’d also like to be absolutely clear that I’ve always followed family requests. I just genuinely don’t understand why some families are intent on keeping relatives who recognise no-one and with no apparent quality of life left alive with repeat courses of antibiotics?

My experience has been the opposite in that we had proplems with HCPs wanting to do invasive procedures that we felt were inappropriate. Mum had Alzheimer's and the entire family was of the opinion that life prolonging treatment would be inappropriate and most definitely not what she would have wanted if she had capacity to decide. But on her final hospital admission when we brought the subject up with her Consultant (he wanted to refer her to ICU) you would have thought we had basically asked for her to be murdered! It made a bad time even worse. Later when a junior doctor spent ages trying to get blood off her but failing repeatedly and she was crying I asked what difference to her care these tests would make. "None really but it would be interesting to know" wasn't an adequate reason for hurting a frail and upset old lady in my opinion and I told him so.
As it happened she survived long enough to be discharged to a nursing home where the wonderful staff took great care of her and us and were fully understanding of our wishes. But then she deteriorated over a holiday period and a locum GP visited and tried to send her back into hospital. My poor sister who was there at the time had a terrible fight, even with one of the senior staff backing her up and shoving the community DNACPR papers in his face. They'd only called him for help in making her more comfortable. Fortunately common sense prevailed and she was able to die peacefully in the home, but it was a battle to achieve that.

We signed a dnr once she went into nursing care and no longer knew who we were. I thought most did to be honest, the care home encourages it (they only take severe dementia that the fancy care homes no longer want)

Why have you namechanged to start this thread?

@FirstPost99 and @Candleabra thank you for taking the time to reply and explain.

YANBU OP. I’m currently next of kin for my elderly, 85 yr old aunt. She is schizophrenic, diabetic, deaf, her heart and kidneys are failing, she’s incontinent and over the last couple of weeks her mobility has gone.

She went into hospital after a fall a couple of weeks ago and her (lovely) care home have said she can’t return to them as she needs too much assistance which they have neither the skills nor equipment to help with.

In the last two weeks she’s moved from her care home, to hospital, to an assessment centre and now is to be moved again to a place she can stay whilst we find a nursing home for her. It’s so disruptive and confusing for her. She has no quality of life at all. I hope she finds peace soon.

You sound lovely OP, so very kind and caring and with your patients best interests at heart. I hope my aunt is looked after by someone so kind in her last days.

@TheSeedsOfADream I would have thought that was obvious. It’s a contentious topic, and I knew there would be a few ‘im glad you aren’t looking after my relative’ responses.

I agree op.
My wonderful, intelligent lovely mother had a sad last few years with no quality of life at all thanks to dementia.
My dh and I have signed a living will and I hope the children will do as we’ve requested.

We've talked about it - my mum has early onset dementia
I've said look if her dementia is bad and she has pneumonia and is dying, is it fair to battle the pneumonia to give her another 6 months dying from dementia? I mean.. I often think you wouldn't leave a dog or cat like that, suffering

@TheSeedsOfADream - I’m getting some really helpful responses. You don’t have to believe I’m a HCP, I don’t have to prove to you I am. If it’s bothering you so much you can report me, and MN can check my record. I regularly name change anyway. If the thread is upsetting you I’m sorry - but I’m not making you read it.

I'm in this situation now but it's very difficult to talk about. when I alluded to it once on here someone said it sounded like I wanted to kill her and said "your poor mum" and then when I objected and said that's not what I meant at all she said I sounded unhinged. There are some really horrible people on here so I am now very wary of sharing opinions on this very sensitive subject.

To add I don't think it's a vile question
Let's say my dog is incontinent, deaf, unable to leave his bed, can't walk. He gets a severe infection. Is it fair to go through IV antibiotics etc etc or would you look at the quality of life and say PTS? Yes, I'm aware people aren't animals
Would I want to live like that? No. And my feelings have been made very clear to my family in case of accident

I used to care for people that were bed bound, no visitors, no entertainment except a TV, incontinent, unable to speak/communicate.. it's awful

My dad has dementia. I know and have always known his wishes. He doesn't want to live past 'being cared for 24/7'.

I will have no problem letting him die the way he wants when the time comes.

@Croleeen

I'm in this situation now but it's very difficult to talk about. when I alluded to it once on here someone said it sounded like I wanted to kill her and said "your poor mum" and then when I objected and said that's not what I meant at all she said I sounded unhinged. There are some really horrible people on here so I am now very wary of sharing opinions on this very sensitive subject.

I don't know if you know, but there is a fabulous ongoing chat thread in Elderly Parents where you can talk about anything and be welcomed with no judgement. it's been running for years.

My mum was diagnosed with early onset Alzheimer's and it's 9 years since her diagnosis. She is totally incontinent, non verbal and bed bound. She doesn't know who anyone, who she is or where she is. I have grieved for my mum already and her eventual death will be a release because all that exists now is a husk. My mum left her body years ago.

I'm glad you've raised the topic.

We hold power of attorney for each other and also have made advance medical directives regarding the type of treatment we would refuse in certain circumstances.

Although we're in good health we're old enough to be at extra risk from coronavirus and its complications. I'm not worried about dying, but I'd hate to be kept alive in the state OP describes.

Like you left Do No Harm at the door when you started talking about euthanising people?

For some dementia patients, as I'm sure you well know, the onset isn't sudden with a quick progression. Some of our relatives can spend years with people thinking they're 'a bit dotty' as we used to say, and slowly go downhill, with periods - sometimes long periods - of clarity, and staying in descent physical health all the time. It becomes, if you like, your new normal and you get quite used to your loved one, the person who raised you maybe, not even knowing who you are sometimes. In that situation you don't just suddenly decide one day to refuse all treatments going forward. It's so much more complex than you seem to realise.

@Notsandwiches I’m so so sorry. I’ve seen cases like your mum again and again and again. It’s so hard for everyone.

@DressingGownofDoom

For some dementia patients, as I'm sure you well know, the onset isn't sudden with a quick progression. Some of our relatives can spend years with people thinking they're 'a bit dotty' as we used to say, and slowly go downhill, with periods - sometimes long periods - of clarity, and staying in descent physical health all the time. It becomes, if you like, your new normal and you get quite used to your loved one, the person who raised you maybe, not even knowing who you are sometimes. In that situation you don't just suddenly decide one day to refuse all treatments going forward. It's so much more complex than you seem to realise.

Quite. You'd think a HCP might have picked up on that wouldn't you.

@DressingGownofDoom I’m not talking about people who are ‘a little bit dotty’, I’m talking about people with severe dementia who need24/7 care be that in an institution or at home.

Wow, you are so angry @TheSeedsOfADream

I take it you haven't been through the heartbreak of a relative with severely advanced alzheimers.

It is obvious that those who agree with the OP have, and they feel justified in agreeing with the OP.

MIL had very advanced alzheimers, she fell and broke her hip. She had zero quality of life, was doubly incontinent, wouldn't eat or drink and was in a lot of pain. She wanted to die. Fortunately no-one had to make a difficult decision, but it was a relief when she died.

@TheSeedsOfADream where have I mentioned euthanasia?

I’m sorry, but you are here to pick a fight in a thread that many are finding helpful, and I’m not engaging further with your posts.

[quote Stonehengecalling]@DressingGownofDoom I’m not talking about people who are ‘a little bit dotty’, I’m talking about people with severe dementia who need24/7 care be that in an institution or at home.[/quote]
Yes and I'm talking about the progression of dementia, do you even understand my post? Do you know anything about dementia at all?