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?

I try not to, but I do feel my blood pressure rise when well meaning posters on social media post about lovely music and sensory gardens and village greens and such like for dementia sufferers. For our family member, such things could not be more irrelevant - they are a millions miles away from the scared, aggressive, angry, incontent reality of his existence - it is no longer a life. The care home encourage him to eat and drink. They have to. So he lives on. In hell. So true. What do I do about the little men who live in the loft and won't leave her alone or the giant spiders all over her wall. Imagine living that nightmare day and night for years.

Side note: why IS delirium so horrible? Why can't people live in lovely sunny dreams about nice cake and going out with Keanu Reeves? Why does it have to be so terrifying for them? (I am sure there is a sensible neurological answer to this but I just think it is so bitterly unfair.)

My recent experience of TEPs was

1. a phone call with the GP. No MDT. I saw the subsequent form
2. unidentified Dr in A&E suggesting it. Don't think he auctioned it
3. palliative Dr (Not consultant) forgot to mention it in our face to face so phoned me to discuss (written up) No MDT
4. practice nurse from GP discussing it- I'm sure GP signed it but no further discussion No MDT

I think it's quite obvious from the numerous recounted experiences of relatives on this thread that what the palliation self described experts on this thread state IS happening and is a good way to die is not our experience in reality. This needs discussion/reflection. Argue with OP as much as you like but enough people who have worked in care homes have also come here and described horrendous experiences.

I'm a bit weary of the ad hominem attacks on the OP from posters claiming they're the real HCP. Look, you're all just posters on a forum, so maybe park your ego at the door and engage with the issue rather than parade your apparantly superior credentials?

Well said @HeadNorth.

I watched my grandmother go through Alzheimer's and then my mother.
I sort of assume it will be me in due course.

I absolutely don't want my life prolonged at all, I want to die early, peacefully and without any distress or pain. Quite happy to have my life shortened, nor do I want to use up valuable NHS resources when I will die anyway....no point in prolonging things. I am of sound mind, no-one has influenced my decision either.

I hope someone writes that into my notes as I have doubts as to whether anyone will listen to my wishes when the time comes.

I try not to, but I do feel my blood pressure rise when well meaning posters on social media post about lovely music and sensory gardens and village greens and such like for dementia sufferers. For our family member, such things could not be more irrelevant - they are a millions miles away from the scared, aggressive, angry, incontent reality of his existence - it is no longer a life. The care home encourage him to eat and drink. They have to. So he lives on. In hell.
Yes there is this constant narrative in the media, even more noticeable now because of Covid; the lie that life in a care home is all afternoon tea, visits by llamas, and doing the okey-Kokey. I think it's really irresponsible.

I don't think I have heard once on the endless news stories about deaths in care homes, a relative say, 'it was a relief she went, she was suffering so much...' It's such a taboo, but it is how many people feel once quality of life goes for their loved ones. I certainly don't want my life prolonged once the quality is all gone.

I once looked after a lady that had wide spread cancer. She was only in her 60s. She did not want further chemotherapy.
She got admitted to the ward with a chest infection. She passed away really suddenly when i was on night shift. Somebody was with her and things were very peaceful.

Her family came into the ward at 2am shouting at us. They knew she did not want resuscitated but they blamed us.
I understood that it was grief, but to resuscitate somebody ( if it worked) that has terminal cancer is cruel.

@WanderingMilly - you can write your wishes in an Advanced Directive and give it to your GP and family. I found a template on the Internet.

Advance directive is the way to go IMO.

I don't think I have heard once on the endless news stories about deaths in care homes, a relative say, 'it was a relief she went, she was suffering so much...' It's such a taboo, but it is how many people feel once quality of life goes for their loved ones. I certainly don't want my life prolonged once the quality is all gone.

This is such a valid point. There will be plenty of relatives thinking that, but you would never say that to the media - can you imagine the baying for blood from the terminally self-righteous? Which means we are a fed a distorted story and if you never have to directly experience it you can cluck along with the media narrative of Vera Lynne songs played to sweet white haired people smiling contentedly through their last days.

@CarterBeatsTheDevil thank you for your latest gracious and articulate post. I think you have covered most of what I was trying to say- and given a recent example of your own experience in explaining how hard it is. Covid has certainly expedited the completion of many TEPs, but none, in my opinion, have been in appropriate. I have completed LPA documentation. It clearly states I don’t want to be kept alive or allowed to live longer with poor quality of life.
As you say, you were shocked yesterday when your were asked about end of life care; I asked a 93 year old a few weeks ago who was indignant at the question. 93! Has she honestly never considered her own mortality? None of us live forever. If this thread stminulates end of life discussions in just one family, then it’s been worthwhile.

I'm glad you started this thread @Stonehengecalling

Sorry posted too soon.

I also think there needs to be a lot more discussion on DNR and CPR and exactly what that involves and means for the patient. CPR is an absolutely brutal process which at best results in bruising to the chest and ribs, and at worst results in broken ribs and punctured lungs.

For someone who is confused, frightened, doesn’t know who they are or what is going on around them pummelling their chest to the extent that they will wake up with such horrific consequences isn’t IMO the answer.

A lot of people think that it’s harsh suggesting DNR for many elderly people, but I think that in the event of someone who is frail and elderly it shouldn’t be a case of life at all costs.

FWIW I have had CPR and have first hand experience of the after effects and I am only 46. I wouldn’t want that for a frail and confused relative with a terminal illness.

Personally I hope that if I ever develop dementia I will still be of sound enough mind when I am diagnosed that I can take myself off to Switzerland.

I don't think I have heard once on the endless news stories about deaths in care homes, a relative say, 'it was a relief she went, she was suffering so much...'

I have heard this many times.
Lots of pp have said it on this thread.

Living with dementia is no fun for anyone- not the patient, not the family, not the carers (even though they do a wonderful job.....looking after violent, incontinent, confused patients can never be described as ‘fun’).

@Stonehengecalling - I agree with you. I was making the point that the media have a narrative that life in an elderly care home is ok, when the reality is it's awful for probably the majority of people in there.

stonehengecalling I didnt know that families had the chance to ask for no medical intervention in such cases. If I had dementia and couldnt articulate my wishes I would want my family to be able to request that I be kept comfortable and sedated if needed but I would not want to be kept alive for such a poor quality of life. I hope that families are allowed to make such requests.

Hcp are duty bound to preserve life aren’t they? Or at least to try
My nan died at home. She was in her 80’s it wasn’t unexpected she had heart failure
My parents were there. Another relative had time to get there ( 2am). And then not knowing what to do they called an ambulance
Paramedics arrived and insisted on cpr and defibrillating her Even though my parents said she’s been unresponsive with no pulse or breathing for 1/2 an hour
That was more traumatic than just leaving her .

@CarterBeatsTheDevil

Side note: why IS delirium so horrible? Why can't people live in lovely sunny dreams about nice cake and going out with Keanu Reeves? Why does it have to be so terrifying for them? (I am sure there is a sensible neurological answer to this but I just think it is so bitterly unfair.)

From my experience, and that's all it is, of caring for people with dementia, I think the damage caused induces a dreamlike state, where the boundaries between reality, dreams and memory are blurred or gone all together. Time doesn't really have a bearing, and often the harshest and hardest memories are the ones that stick the longest because they have the greatest impact on us. Times they've been scared, worried etc, and people dream and think about those things, but are unable to distinguish that it's a dream or memory. It's as real to them as me typing this is now in my chair to me. I'm sure there is a good neurological explanation for it too, but yes, it's incredibly cruel.

I have to wonder whether a lot (I'm not saying all but a lot) of the negative comments on here are from people who haven't been in the position of having a relative with severe dementia. I have one and it's horrific. It's no life.

They are cared for in a specialist psychiatric unit. They have lost the ability to care for themselves, to wash and dress, use the toilet. They've forgotten the most basic functions, like eating and drinking. They can no longer speak because they can't form words and they can't understand what you are saying. They can't recognise the faces of people who they have known their entire life.

But it's even more than that. They pace the halls, screaming. Shouting incoherently. They are on a cocktail of drugs to try and reduce the anxiety and confusion.

OP, I get it. They are cared for by the most amazing doctors, nurses and HCPs but they are existing rather than living. We have signed DNR forms and have made it very clear that no life prolonging treatment is to be given. If they refuse to eat or drink then so be it. It makes me sound like a bad person but I can honestly say that to effectively starve to death is better than the hell they are currently living. I can't understand wanting to prolong the suffering

compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/

Link to online form for an Advanced Directive

@lagerandblack

I didnt know that families had the chance to ask for no medical intervention in such cases.

They can, but for lots of reasons, many of which have been articulated upthread, most don’t. I’ve also had arguments with colleagues who think it is unethical NOT to treat. So you could find yourself up against a dr who won’t entertain the idea of letting nature take its course. As a relative you need to be very clear and very assertive, which I can appreciate in such difficult circumstances some people simply couldn’t manage.
My usual approach is something along the lines of “your mum has pneumonia. She also has dementia. There is no ‘right’ way to manage her, and we will he guided by you and by what’s in your mums best interests. We can keep her comfortable and let nature take its course or we can treat her with antibiotics and fluids and she may get better. If her heart was to stop beating I don’t think it would be in her best interests to try restart it and I don’t think we would be successful if we did try. But please understand that her dementia won’t improve and in fact may deteriorate as a result of this infection. Has she ever expressed a view of what she would want at a time like this? Or have you as a family thought about how you would like her illness managed?’

As I said upthread, I’ve only ever had 2 families ask for their relatives to be kept comfortable and only receive sedation and pain relief.

I don't want my DF treated, no. Dementia is awful, really awful and there's very little of him left that I recognise any more. He wouldn't want treatment either.

I have to wonder whether a lot (I'm not saying all but a lot) of the negative comments on here are from people who haven't been in the position of having a relative with severe dementia. I have one and it's horrific. It's no life.

I agree, and I think a few of us have also pointed this out.

@Stonehengecalling I'm with you totally on this subject. I have a relative who had had dementia for years. Living at home, bed bound, incontinent, mostly refusing food or drink by clenching teeth. Has no idea whether alive or dead. Weighs very little etc. The spouse is determined to keep the other half alive to the point of paranoia. Covid has sent the spouse almost mentally ill with the worry of the OH catching it and dying. It has clarified the thoughts of all the rest of the family. None of us want anything to prolong our lives once quality of life has gone. The situation is very upsetting and plain awful for the onlookers. My dad developed dementia very suddenly and severely, but died within days. It was a relief. My mother developed vascular dementia and although relatively young died within weeks. I've been so fortunate that I didn't have to make decisions, but if I had, it would be make them comfortable and no further intervention.

I watched my grandmother go through Alzheimer's and then my mother.
I sort of assume it will be me in due course.
I absolutely don't want my life prolonged at all, I want to die early, peacefully and without any distress or pain. Quite happy to have my life shortened, nor do I want to use up valuable NHS resources when I will die anyway....no point in prolonging things. I am of sound mind, no-one has influenced my decision either

My thoughts exactly.