Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Original poster

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

515 replies

Stonehengecalling · 07/11/2020 22:07

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?

OP posts:
HeadNorth · 09/11/2020 11:16

I'm with @daisycottage, I have found @CherryPavlova's posts at best dissmissive of the reality of many posters lived experience and at worst deliberately cruel. It is so unneccessary to bandy words like 'murder' about on such an emotive and sensitive thread.

chickenyhead · 09/11/2020 11:26

@cherrypavlova has shown more compassion in this thread than OP who is frankly really dismissive of the lived experience of many witnessing end of life.

Retiremental · 09/11/2020 11:35

[quote chickenyhead]@cherrypavlova has shown more compassion in this thread than OP who is frankly really dismissive of the lived experience of many witnessing end of life.[/quote]
Exactly this.

Interested in this thread?

Then you might like threads about these subjects:

Dementia & alzheimer's General health
ancientgran · 09/11/2020 11:35

Even with wonderful care the last weeks/months/years for someone with dementia can be hell on earth. My relative is in a wonderful home, they are so caring but she has awful hallucinations, has no idea what is going on and her last enjoyment, food, has now lost its power. I have seen young carers calming her by sitting with her and using a lovely body lotion to massage her hands and arms while talking quietly to her, it is very caring but the relief is very short.

daisycottage · 09/11/2020 11:37

@Ahorsecalledseptember

Did you miss the part where I explained I had worked as a qualified nurse in care homes for around 27 years?

There is no one that understands the issues more than I do. I have also done the GSF. I have nursed dementia and palliative patients - including family members - for 30 years.

Believe me, she doesn't even comprehend the issues.

Retiremental · 09/11/2020 11:40

‘Believe me, she doesn't even comprehend the issues’

Which specific issues are you referring to? Your arrogance is staggering in your claims that no one understands the issues as you do. Do you SERIOUSLY believe that?

mrscampbellblackagain · 09/11/2020 11:42

Would be really good to have a respectful discussion on this topic surely? Lots of people have good points to make but it gets lost in all the aggression and shouting.

daisycottage · 09/11/2020 11:42

Oh yes, I believe it. Me and others like me - colleagues, family members etc.

chickenyhead · 09/11/2020 11:43

Denying basic medical care to people who are dying, when it is readily available is truly evil imho.

I'm not talking DNR. I'm talking antibiotics, pain medication and fluids. I would prefer legalised euthanasia.

Retiremental · 09/11/2020 11:45

@daisycottage

Oh yes, I believe it. Me and others like me - colleagues, family members etc.
Scary.
VinylDetective · 09/11/2020 11:45

Given my family history, it’s pretty much a certainty that I’ll get it. I have an advance directive which states that, following a diagnosis of dementia, no other condition is to be treated. Cardiac failure, cancer, stroke - bring it on and let nature take its course. There are a lot of people like me.

RB68 · 09/11/2020 11:47

Because the person you know is in there somewhere, you are their advocate and you are best placed to know what the person would have wanted.

We have been in the position of letting someone go and it is one of the hardest things I have ever had to do. Many people just are not able to do that. You have to go nil by mouth, you have to clean their mouth and teeth when often they are fixed, you have to hold their hand as they choke or struggle to draw breath, this is often your Mother, Aunt, Father, older sibling. It is HARD often relatives need things couched in a way that the decision is really obvious and I find it is the health care experts that shy from this discussion with people. I have been through this twice now and it is distressing.

daisycottage · 09/11/2020 11:47

I will tell you what is scary.

People who cannot express themselves and who have no one to speak up for them, lying in bed, in untreated pain and with countless other major discomforts, being tube fed and then aspirating.

daisycottage · 09/11/2020 11:49

Forcibly being kept alive in this state for months, even years.

No pain control. Think about it. Actually imagine what that must be like.

Retiremental · 09/11/2020 11:50

@daisycottage

I will tell you what is scary.

People who cannot express themselves and who have no one to speak up for them, lying in bed, in untreated pain and with countless other major discomforts, being tube fed and then aspirating.

Untreated pain that can be relieved by antibiotic therapies? You refuse to administer antibiotics prescribed for patients in your care? When was your last update on safe enteral feeding?
Retiremental · 09/11/2020 11:50

@daisycottage

Forcibly being kept alive in this state for months, even years.

No pain control. Think about it. Actually imagine what that must be like.

Who is advocating no pain control?
daisycottage · 09/11/2020 11:52

I have had to fight for pain control for people. I have had doctors refuse to prescribe for the syringe driver because........"not on my watch"......trying to avoid the person dying because they don't want to end up in Coroners court.

"Just give them a bit longer, we'll see how it goes, maybe next week......"

daisycottage · 09/11/2020 11:53

Safe enteral feeding?

Sometimes no matter what you do people vomit then aspirate.

daisycottage · 09/11/2020 11:55

I have known nurses too lazy to go to the controlled drug cupboard to check out morphine.

I have had care assistants in tears explaining to me how nurse X sleeps on nights and won't get up to attend.

Yes, I reported it.

Retiremental · 09/11/2020 11:56

@daisycottage

I have had to fight for pain control for people. I have had doctors refuse to prescribe for the syringe driver because........"not on my watch"......trying to avoid the person dying because they don't want to end up in Coroners court.

"Just give them a bit longer, we'll see how it goes, maybe next week......"

So as the patients advocate you request another GP assessment. You ask for a specialist palliative care referral and assessment. If you get nowhere with those you escalate to your line manager and then you escalate again. You are a health care professional. You are accountable for your practice. Are you seriously saying that you have repeatedly been part of a culture that has allowed people to die in pain?
daisycottage · 09/11/2020 11:56

You think these things don't go on?

This is why I left nursing. I couldn't stand it any longer. After all those years. I could tell you things which would keep you up at nights.

People have absolutely no idea about what goes on. Trust me.

Retiremental · 09/11/2020 11:56

@daisycottage

Safe enteral feeding?

Sometimes no matter what you do people vomit then aspirate.

When was your last update?
daisycottage · 09/11/2020 11:58

@Retiremental

Are you joking? Of course I reported it. Of course I asked for GP reviews, spoke to the manager, I even phoned the RCN.

ancientgran · 09/11/2020 11:58

This is so important as a discussion but I think people aren't always talking about the same thing. Can we maybe agree on somethings? I would suggest:

Early dementia people get treated unless they have said otherwise.
Advanced dementia where people can't understand what is going on, live in a state of terror or misery due to hallucinations - try to comfort them, give them medication to relieve anxiety/psychosis but don't take drastic steps for other conditions e.g. no major surgery, no chemo.
End stage dementia where people aren't mobile, can't eat or drink, can't communicate - keep them comfortable, pain relief, decent care eg. kept clean and free of bedsores but no active treatment to keep them alive. Somethings probably won't help but won't hurt either, someone reading to them or playing some of their favourite music or chatting even if you don't know they can hear.

Dementia really isn't one thing, one stage, when my relative first got confused I wanted help for her, when she got worse I wanted care for her but now I just want release for her. I don't believe in euthenasia but I also don't believe in fighting to keep someone alive who is suffering and is close to death.

I think OP is talking about the last category and I broadly agree with her, if someone was suggesting starving granny to death because she forgets things I wouldn't agree in the slightest.

daisycottage · 09/11/2020 11:58

I updated every year.