To think this is the most awful thing to say to a parent

@Stepsisterfromhell my dad is in a similar situation (although not yet diagnosed as he doesn’t want to be) and Mumsnet can be an awful read for families in this situation. I’ve found the Alzheimer’s Society and Dementia UK websites much more useful - both for the expert advice and for the personal stories.

I’ve previously seen three relatives go through dementia (Alzheimer’s, Parkinson’s Dementia and an undetermined kind which may have been mixed dementia) and as challenging as that was, I’m relieved to say that none of their lives were ones of unrelenting misery from diagnosis to death. I don’t relish the thought of developing dementia myself, but there are diseases I fear much more, including Motor Neurone Disease (which was the fate of one of my DP’s relatives), Huntingdon’s Disease and certain types of cancer.

I’m luckier than some of my friends and acquaintances who’ve already lost their dads, so I’m trying to get better at living in the present, accepting the situation and making the best of it. My mum was the first to see which way the wind was blowing and a few years ago, she arranged for herself and my dad to have primary Power of Attorney for each other and for my DSis and I to have secondary POA for them both. I think that was a wise move.

My father has recently been diagnosed with dementia and I was looking for threads for support as a family member. This is the first one I came across and although I am glad that the majority of votes were against euthanasia for the treatment of dementia, the comments are appalling. My dad is still my dad and I see his own frustrations daily at losing his memory and getting confused and frustrated about things not working as they used to. But he is fighting for every bit of normal life he can muster and I want to help him do that. His family have pulled around him and we will care for him out of respect for the man that he was. What an awful bunch of anti-human posters, I am shocked to my core.

Side note, that with alzheimers or dementia you would be too late for Switzerland sadly, you'd be deemed to no longer have capacity. My dad looked into it after his diagnosis.

You never did come back to me on where I had said this, by the way, so I assume you accepted that I didn’t.

LPA are easy to sort out, I did mine and my husband's. I'm not sure why they would be harder for young people unless you mean young people wouldn't think to do it. Mind you having had one for relative id be wary about doing it again. It is a heavy responsibility.

They had capacity when they made decisions following a positive genetic test. As the disease progressed they were pushed between mental and physical health trusts, with a lack of co-ordinated care and often disagreements between different teams around capacity, even when in psychosis. Invasive, incorrect treatments further damaged their brain e.g. electic shock therapy, which took away short term memories. That team then walked away. There was no time for a LPA, however LPA for neurological diseases in young people are hard to come by, especially when the disease causes a lack of insight. Rare diseases, that a lot of doctors have no experience of, that cross between mental and physical health teams with no guaranteed 6 months left to live provision, will never be given the right to die in this country, leaving violent suicide or a living hell for people who would rather die peacefully. I totally respect everyone's right to choose, or not, but do think rare diseases should be special considerations within any assisted dying bill.

Who is authorising the treatment. I had LPA for an elderly relative. I was always consulted about their treatment. Doctors never tried to pressure me to agree to treatment I didn't agree to. This even went with COVID and flu jabs where I always said I agreed in principle but at any sign of distress they had to stop, I was always consulted. I generally got the impression that doctors were relieved I wasnt pushing for invasive treatments.

Honestly I totally get that. But for me personally the trauma of watching someone pinned down to have invasive treatment that they didn't want, loys if attempts on their life and them finally committing suicide in a violent way was way worse than holding their hands dying in a way they wanted. Reality was that with chorea and dementia they couldn't control their movements anyway. They were young, they didn't want to spend years in a hospital/care home with no meaning to their life. It was their choice and I think medical professionals, social services etc should have respected their wish to die, rather than an illness that could only get progressively worse, being force fed or starved and having no dignity or respect at all.

I would never want to ask a loved one to witness that. It doesn't have to be you finding their body. I'm traumatized having watched my much loved dog being euthanised when it went horribly wrong. No drugs don't always work like they are supposed to. The very experienced vet was very distressed and till the day I die I think I will hear the bang as he fought for his life and then collapsed hitting his head on the floor. It was 13 years ago and I'm crying remembering it. Would I risk that for one of my lived ones? No I can't think of anything more selfish.

Just googled it and PTSD after witnessing assisted dying is a known risk.

I would rather watch a loved one and hold their hand as they died in a manner which they have chosen...rather then find their body or watch them suffer after failed attempts, or watch them in a living hell having treatment forced upon them they never wanted and didn't consent to either. All in an advanced directive which was completely ignored. I do appreciate that there are strong feelings, but assisted suicide is what they wanted, they were so scared of the inhumanity that was to come. The trauma of violent suicide and helplessness of watching medical professionals give invasive medical treatment that was not wanted and directly against expressed wishes is immeasurable.

Your choice. You get to have one. I don’t.

Yes other methods are guaranteed but I'm not going to go into that here. Well we are all different but I wouldn't ask people who love me to witness my suicide. It could traumatise them for life.

Nothing else is guaranteed. And my other point?

The method might not suit you but you can do it.

I’m not. The only guaranteed means of suicide is by restricted drugs which aren’t available to me. And the law doesn’t allow for the people who love me to be with me without being criminalised.

Thank you for rational engagement @NoctuaAthene. As it goes I agree with you and I doubt my dementia situation, should it happen to me, will ever be solved however I might wish it. I am, however, very angry that the ability of people with capacity who are terminally ill to determine their own future is being blocked by a minority of unelected members of the Lords who I suspect would change their minds in a heartbeat if their lives were affected.

You are allowed to do it. Other people aren't allowed to do it for you

I see your point. But the difference between being given the choice to manage your own finances/medical care etc after you've lost capacity, and managing decisions about euthanasia, is that there's a robust and well established (and yet very unsatisfactory in many ways) system for managing someone's money and general welfare after they've lost capacity, whether that's by the person's nominated attorneys via POA or professionals/the state. It isn't a case of simply and blindly following instructions left by the person before they lost capacity, you have to balance the person's expressed wishes prior to losing capacity against their current expressed wishes (considering how much they are able to understand/communicate) and an objective assessment with what's in their best interests. For instance, deciding if someone should be cared for at home or go into residential care, obviously any instructions left to attorneys should be followed as best as possible, plus if the person currently has an opinion either way that has to be taken into account - but even then the person's wishes may not be able to be followed because it just isn't in their best interests/safe for them, or in some instances even possible - this all predicated on the fundamental idea that their life still has value and their interests have to be protected. I can totally see why people would feel as though euthanasia for dementia could still be compatible with valuing life and the person's best interests in some circumstances, but it's far from straightforward, considering how very hard that is in practice to manage, and how many legal/moral/practical difficulties can arise about decisions like moving to a care home which are less momentous and more reversible than euthanasia.

I'm struggling to see how we could get to a place in the UK where we have a workable system for advance declarations for euthanasia of non-capatious persons - also bearing in mind the difficulties in agreeing the current bill which only ever proposed medical assistance for terminally ill adults with capacity so in many ways far more narrow a scope...

What about people who decide to end their own life for other reasons? They have made their own decision after all so shouldn't we try to stop them? My grandson held on to a girl for an hour and a half to stop her jumping off a bridge until police and ambulance arrived. The following day she found him on Facebook and thanked him as, by then, she had changed her mind.

Please quote the post where I said they shouldn’t be allowed that right? What I have done, as have many, is pointed out the flaw in the plan. That’s different, isn’t it?

Yes, I’m angry. Am I not only not allowed to choose my own guaranteed time to die but apparently I’m also not allowed to be angry about it? Anything else you want to stop me doing while you’re at it?

Doesn't change the fact that legally you can make that decision and carry it out. You seem very indignant that people can stop you, they can't as I've said you make your own decision but don't try to make that something that means others can be killed because they decided something years ago that they don't feel now.

I agree and that's why I think dementia will be an exception if/when AD is legalised in this country.

Laughing is what is getting us through this so no worries!

I know some posters have said that that the final stages of dementia are always awful and I have to admit I have personally never seen someone progress beyond sub-stage 7a or 7b. I have heard though that if dementia sufferers survive long enough, they can no longer hold their heads up and their newborn reflexes return. That makes me wonder what they actually do experience? Might they experience the world in a similar way to a newborn?

Three of my relatives have died from/with dementia and two of them died from infections. I noticed that in their final years, their doctors reduced the amount of medical treatment they gave them. For example, it was decided not to treat one relative’s slow-growing cancer. And when they fell ill with their final infections, they were not hospitalised or given antibiotics. They both drifted away peacefully.

I believe they might have died at the right time for them, as one, despite being rather jolly and laughing often, could barely speak beyond a single, repeated word, and the other could still speak in sentences but had started spitting food out instead of eating normally.

I suppose my point is that many people with dementia do not reach the final sub-stages for a variety of reasons. My friend’s father only spent a few months in a care home before dying from pneumonia. Before this, his family had had the startling experience of seeing him change from an angry, bitter man into someone calmer and nicer.