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?

@ohtheroses - sorting out POA has been on my to do list for a while

@pointythings - I would do the same re. switzerland - I have no desire for anyone to have to personal care for me, I personally would rather die if that is what my life had become

It is all so personal though and what is right for me and my family is not of course the same for others.

The whole idea of artificially extending life is generally tosh

I’m sorry, but thousands of lives are ‘artificially’ extended across the UK every day. Surely that is what modern medicine does? Keeps people alive (and I’m not talking specifically people with dementia) who without intervention would die. We’ve got to a point where we all feel entitled to the benefits of modern medicine, So much so that we seem incapable of allowing people (Even those who have reached an obvious end of life state) to die.

Me too Pointy. I know it seems easy to say and when the time comes you change your mind. However over the last few years having seen my parents go downhill, having seen friends who have parents who are aggressive and who dont recognise them, having a close friend who decided for very worthy reasons to move her Mother into her home and it then breaking her.

I think we need to take a long hard look and what we are doing here.

@pointythings - I would do the same re. switzerland - I have no desire for anyone to have to personal care for me, I personally would rather die if that is what my life had become

I totally agree but I think I’m right in saying that one has to physically be able to get oneself to Switzerland and have full mental faculties.
Often when quality of life is so poor that one would rather die, then one won’t meet the criteria.

Thats a good point AND. If you appointed your DH as POA would they be able to speak for you and get you to Switzerland? I know the surroundings arent great at Switzerland but honestly, planning your death with people around you rather than suffering, in great pain wishing for death. No thank you!

[quote Andante57]**@pointythings - I would do the same re. switzerland - I have no desire for anyone to have to personal care for me, I personally would rather die if that is what my life had become

I totally agree but I think I’m right in saying that one has to physically be able to get oneself to Switzerland and have full mental faculties.
Often when quality of life is so poor that one would rather die, then one won’t meet the criteria.[/quote]
This is true, and taking the Switzerland route means accepting you're going to die earlier than you would normally do. Having seen my parents' last years, I'm up for that.

Of course I may not develop dementia. My grandmother didn't. My father's dementia was due to Parkinsons', my mother's due to alcoholism, so it may not happen to me. But if it does, the moment I get that diagnosis and am still compos mentis, I'm outta here.

But if it does, the moment I get that diagnosis and am still compos mentis, I'm outta here

Pointythings -me too, and we can go on arguing about Brexit in the Next World

Hopefully this thread has raised some ideas which will make people consider their death. I believe that birth and death are very similar...we hold ideas about managing it, we fear it, we stupidly think we have some control and some people suffer a lot.
Being informed, writing a plan and having an advocate to carry it through if you can’t, helps.

I fear any professional who thinks they know best for me. I value a professional who finds out what is right for me.

My choice: let me die when my mind or body have given up on me. Make me comfortable but do not attempt to cure me or prolong my life.

We are all going to die - just like all the millions of people before us.

I'm in my 60s and sometimes think about dying. And try to just be sensible and accept that it is happening sometime in the not so distant future. No one hangs on forever - just hope the life you had was a good one.

@Bathroom12345

Thats a good point AND. If you appointed your DH as POA would they be able to speak for you and get you to Switzerland? I know the surroundings arent great at Switzerland but honestly, planning your death with people around you rather than suffering, in great pain wishing for death. No thank you!

No. In order to use assisted suicide you must have capacity to make the decision at the point of taking the drug cocktail. I believe for Dignitas you must be able to travel to the clinic independently too. It’s why those who choose to use it often decide to die at a quite early stage in the disease. The numbers remain low but have increased. In 2019, 42 British people used the clinic. The overall useage is quite low. Just over 700 people a year. None had dementia.

LPA is not valid outside of U.K. You act under the laws of the country you are in. An advanced directive does not count for assisted suicide either.

It’s very frustrating to have to choose to take your life earlier than needed because of the inability to manage death with kindness. Too many accounts of suffering on this thread.

For frustrating read tragic/unnecessary

To be clear a U.K. advanced directive doesn’t count. It must be a Swiss document provided by DIGNITAS. You must be physically capable of completing the final act of lifting the cup ,and swallowing, using your nasogastric tube or opening an iv cannula valve. It is suicide not euthanasia.

Agree 100% OP and I have a grandfather in a similar-ish position. Often think it would be better (for him) if he passed. His life is over and now he is just in pain, as are all the family witnessing it.

I pray that someone would be kind enough to end it for me if I ever found myself in a position where I had no quality of life and was unable to end it myself.

I had a close friend with MND. The diagnosis was not a surprise as it ran in his family and he had always expected that he would develop it. Shortly after the diagnosis he became a member of Dignitas. The interesting thing is that whenever he reached a point that he had thought, as more able-bodied person, he would want to die, he didn't. He wanted to live longer. His illness progressed to a point where he could no longer speak intelligibly, to where he was wheelchair bound, to where he had to spend respite time in a hospice, he could no longer eat or drink. But every time, he wanted to keep going when he got there. In the end he died of natural causes at his desk at home. It was a sobering experience for me in that the reality is that well you and ill you are not the same person. It's made me slightly wary of very detailed advance directives because you're really making decisions for a different person you don't know. He was of course constantly anxious because he recognised that if he reached a point where he could not get to Dignitas and take the medicine himself he would be in difficulties, but he just did not want to end where he had thought he would. I think he would have wanted antibiotics if he needed them, but I am quite sure he would not have expected to continue to be treated if he wasn't responding to them and he certainly would not have expected anyone to advocate for CPR for him.

@Cchick

Agree 100% OP and I have a grandfather in a similar-ish position. Often think it would be better (for him) if he passed. His life is over and now he is just in pain, as are all the family witnessing it.

I pray that someone would be kind enough to end it for me if I ever found myself in a position where I had no quality of life and was unable to end it myself.

It’s sad seeing those we love reach life’s end.

It can be very hard, but there is nothing kind about murder; it is a criminal offence and likely to always be so. You are hoping someone will murder you when you suggest someone will end it for you.

Quality of life is hugely subjective and the only valid perception comes from the person whose life it is.

@CherryPavlova you just can’t help yourself, can you.

[quote Stonehengecalling]@CherryPavlova you just can’t help yourself, can you.[/quote]
Meaning what? That I understand and believe in upholding people’s rights and the law? No, it’s an innate sense of justice and commitment to protecting the most vulnerable.

My father lived in a nursing home for 8 years with vascular dementia. We had a really bad experience when he was admitted to the local general hospital after suffering a minor heart attack. The Matron of the Home was shocked at his deterioration on his return and quietly said to me that ‘in future we will just keep him comfortable here’. Fortunately when the end came they just kept him comfortable and peaceful in his room for his last few days.
This isn’t just an issue for people with dementia. A younger relative had cancer and when the nursing home rang her parents to say they thought she was dying , her parents insisted on calling an ambulance so that she died in a hospital ward instead of peacefully in her own room in the nursing home.

My dad is heading that way.

Has already signed all the DNRs etc while he's able.

He even discussed all the options with his lawyer if there was a way to legally get to Dignitas. (There isnt)

So all of us are in no doubt what to do for him when the time comes. It would be cruel to stop him dying when he so wants the release. (Lots of physical problems too)

@CherryPavlova. Repeatedly using the word murder. Stop being so twisted.

It’s standard but sad to see the professionals coming on here invalidating anyone else’s real experiences and telling us that the reason their loved ones had awful, sad, traumatic final years of life is because they and the people looking after them did it wrong. If only they’d followed their perceived gold standard practice then granny dying slowly from advanced dementia whilst having life supported from medical interventions would have been fine.

The arrogance of some in the medical profession that they can control everything and that advances in geriatric medicine/ prolonging of life are wholly beneficial.

@CherryPavlova your repeated use of the word murder is highly offensive. People have asked to not be tortured by having their lives unnaturally prolonged and said they don’t trust palliative care providers to look after them (reflect on that). So much so they have indicated they would take their own lives prematurely rather than fall into the hands of people who cause that suffering.

You are not listening to what lots of people are saying. Can you not see that your blind determination to ignore the words of many who have witnessed this suffering is not helping the case for better palliative care? It makes me highly suspicious of anyone in that field being able to look after me kindly...they will be judgemental and unkind if your comments are anything to go by.

I'm guessing @CherryPavlova has never had a family member kept alive for months on end, scared, incontinent and in pain with no dignity, when they could have slipped away in their sleep peacefully months earlier.

I have to say that what little faith I had in end of life professionals has been completely destroyed by those posting on this thread. It has also made me utterly determined to take any measure possible to ensure I never fall into their hands.

To define the greatest kindness possible - ending ongoing suffering - as murder leaves me completely incredulous. If we have the decency to treat our animals with that kindness, there’s no excuse whatsoever for withholding it from the humans we love.

I hope by the time I’m deep in dementia end of life professionals will be sufficiently enlightened to let nature take its course and stop playing god.