DH says he won’t honour my wishes re death.

[Chocchops72]

So all this is theoretical as (touch wood) I’m in my 50s and in good health.

i haven’t completely researched this yet, but I am very keen not to have my life extended if I descend into either a debilitating and terminal illness or develop dementia, to the extent where I am bedridden, incontinent, unable to communicate and I want to put in place whatever paperwork I can to ensure this.

DH is refusing to support me in this and says he would not enact it, for two reasons.

one, we watched a Ted talk recently which talked about ‘future selves’ and how people genuinely do change their minds about big decisions / beliefs they have, as they age. So people that have signed an advanced directive, setting out the circumstances where they wish to be allowed to die, may genuinely change their minds about this as they get older. I agree with this to an extent, but I don’t think a decision made when in full control of one’s faculties (ie now) should necessarily overrule a change of heart that might theoretically come once the person has lost the capacity to make a decision. DH has taken it totally at face value though, probably connected to the second reason.

two, his mum is currently in a nursing home. She has Parkinson’s, dementia and severe osteoporosis. She is almost totally immobile, incontinent, cannot speak, communicate or feed herself. She basically lies in a chair or lies in a bed, is fed / washed / toileted, and talked at. Or left in a room with inane cartoons blaring at her. Or being jollied along by nurses / carers. FIL visits daily: he has made these visits the sole focus of his life, his duty / responsibility and expects everyone else to think the same way. If he can’t make it, he insists that SIL (who already visits 2-3 times a week) to take his place, and he calls her every night to ‘update’ her on her mothers (unchanging) condition, which she finds very hard. DH (because we live abroad) get roped into weekly zoom calls, where he basically talks to his dad and sister while his mum sleeps through the whole thing or makes random mumbled comments. Yet because she is cared for she might live in this half-existence for years and years to come.

i have absolutely zero desire to live like this. Or for him and our two DSs to end up caring for me or binding their daily lives to me, or feeling guilty because they don’t. But DH takes it as a great insult when I says this, as if I’m suggesting his mum would be better off dead and that they (FIL and SIL in particular) are stupid for making her so much the focus of their lives.

My experience of MILs situation is that the spouse generally gets asked what the patients wishes are, and I don’t know if medical staff would go actively against the wishes of a spouse. Even if they didn’t match what the patient has written down previously.

what do you think? AIBU to expect DH to enact my stated wishes, even if they don’t accord with his beliefs?

You have to be pretty much circling the drain for doctors to withdraw medical support so it probably won't come down to what either of you want in the end.

That's quite naive. Any of us could be in an accident tomorrow. And old age is not that far away when you are 50 and you need to think about it and get these things in place BEFORE you lose capacity. My DS is 25 and has a health LPA. Everyone should have one really. Brain injury/severe accident can happen at any time.

I would just put someone else as my Health attorney on my LPA if my husband says he wouldn't follow my wishes.

Although I think if family disagree decisions still might have to go to the court of protection. Maybe get some advice from a solicitor in this or as PPs have suggested perhaps see if he'll be more comfortable with a regularly review every 5 years.

It says this on the Dignity in Dying website:

Advance Decisions are legally binding in England and Wales, as long as they meet certain requirements. This means that if a healthcare professional knows you have made an Advance Decision, they have to follow it. If they ignore an Advance Decision and provide treatment that you have refused then they could be taken to court.

In the US you could execute a durable medical power of attorney that was not your husband. It is binding.

My DM spent her final years in a care home due to dementia, her final months were pitiful, she too was curled up in bed or chair profoundly demented, and daily visits by one of us on a rota, insisted upon by dear sis, were extremely difficult, I have made my feelings very clear about DNAR if I end up like her. Make a statement of wishes which makes your feelings clear, although not legally binding it would give a good guide to medics.

And yy there is a massive push from the Conservatives to normalise assisted dying and euthanasia - because they only value people for what they can produce and what they can contribute to the economy.

You're having a laugh, aren't you? Look at the countries where euthanasia is allowed. Canada (Liberal), the Netherlands (Conservative-liberal), New Zealand (Labour), Spain (Socialist majority), Belgium (Socialist).

Everyone I know with an Advance Directive, including me, is on the left of centre. If the Tories were to bring voluntary euthenasia in do you imagine the Labour Party would scrap that legislation if they took over? Lots of people have pointed out that we treat ailing pets better than we do people. Why would we deny people who want it a dignified, self-determined end? There are far worse fates than death.

And yy there is a massive push from the Conservatives to normalise assisted dying and euthanasia - because they only value people for what they can produce and what they can contribute to the economy.

The last bill was introduced by a Labour MP. The majority of those voting against it were Conservatives.

https://www.dignityindying.org.uk/assisted-dying/the-law/rob-marris-assisted-dying-bill-2015/

QED, Blossomtoes!

I expect he feels very sad about his mum and guilty for being far away and you going on about a hypothetical future feels like criticism of his family right now. Leave it for a bit, I don’t think what you want is wrong I just think the wider context will be affecting him.

I think if your advance directive is done before you get ill then the medical world should respect your wishes. With regards to your dh..... maybe your plans make him too aware of his/your mortality??? I'm sorry about your mil....my mum was exactly the same before she passed away. Its horrible horrible thing to watch

Are you serious. So you totally research everything you say. She's having a discussion with her husband not presenting a manifesto or a new mathematical theorem. It's an idea and she's thinking out loud. To me that seems a perfectly natural way to do things.

Are you serious. So you totally research everything you say.

about my death and talking about my partner assisting with it? Hell yes! 😂

@Chocchops72 I need to do the same as you, make plans for my future. I think you need to quietly put things in place, your husband is unable to think clearly while his mother lingers. It’s a very sad situation but if your FiL wants to keep MiL going, all you can do is support your DH.

DSis’s MiL lingered for years in a sort of semi vegetative state which the family found very hard.

My mother had enough capacity to sign a DNR when she went into a home. She was there for 3 years and would have hated what she became.

At the end, she went downhill very quickly so the DNR wasn’t needed.

Do you have a sibling who you could give medical power of attorney to in order to assert your wishes? I totally get where you’re coming from and you ought to seek legal advice in this one. A family member of mine had another family member with severe dementia and other complications resuscitated to the point that it felt like abuse. The care home visits were the centre of their lives whilst the patient lay there in a nappy unable to communicate, deeply confused, peg-fed, unable to express pain, it was hideous. Even the consultants were saying “Why are you insisting on this procedure? For you or for patient?” It was cruel.

When you talk about your MIL, you could have been describing my dad! He had Parkinsons with Lewy Body Dementia, as well as osteoarthritis.

His suffering was immense. He was adamant he didn't want to go into a care home and so I hired Live in carers, but was still visited daiy.

It's been 2 years since he passed. I'm still sufering from PTSD and can no longer cope with the job I once loved. My daughter, now 10, seems to have recovered quite well, but did have a lot of anxiety and resentment.

I've sworn I will never put her or my husband through what I went through. I'm a keen supporter of Dignity in Dying and have registered my wishes. My husband knows and respects my wishes, and has agreed he will enable me to end things on my terms if (and I pray I won't) I ever get struck down with an illness like that.

You can do a Health Power of Attorney. You can appoint people to be consulted on your stated wishes as Power of Attorneys by medical staff and it does not have to be your husband. You can explain to him that you are doing this because you want your wishes acknowledged and recognised and do not want to put him in an impossible situation.

Hubby and I have had this discussion. Having watched my MIL go rapidly downhill with dementia and I work in a care home with disabled adults, and seeing how some of them do not have much quality of life, we have both said we would rather pass with dignity then be allowed to carry on with poor health and suffer. We wouldn't want each other or others to struggle with caring for us and just surviving rather than living a full life.

I think it's great that you are discussing these thinks now. In fact it's jogged my memory to sort something out myself.
I have no interest in what happens to my body when I die. If it happens tomorrow I guess at some level my vanity would like a good party etc with old school psls, friends relatives etc all reminising and saying how wonderful I was....😉but serious, direct cremation and a sandwich at the pub is fine....its the bit leading up to that that concerns me. I've already discussed with my mum that she won't be coming to live with me and I won't be doing much more than a bit of shopping and maybe order something on line. If she needs much more she'll need to go in a care home. Happy to loose my inheritance to fund it. I've also said same to my adult children.
I'm not married so no spouse to consider. Like you I don't want my life 'prolonged' if there's no quality. I'm planning a 'living will' and power of attorney to my adult daughter for medical/health and financial. I have more than one child but this is who I trust to carry out my wishes and be 'fair'. She's demonstrated this in another situation.
Do you have adult children who you could nominate to be your nok regards making decisions on your behalf. PoA could be evoked (?) because you're unconscious either through trauma or through planned surgery and things change. My daughter is the one I feel could best get into my head and speak AS me, not for me. My mum would be derailed by emotion.

The situation with your MIL sounds very challenging. Have you tried discussing with your husband hypothetical situations where its YOU visiting everyday....for years.

I nursed a lady with severe dementia. She had fallen and broken her hip. She was doubly incontinent. Each time we tried to clean her she screamed and fought for her life and thought she was being sexually assaulted. Her thrashing compromised her hip. I questioned why we had her hooked up to fluids and the consultant said she was dehydrated. No,....thats not what i meant....just why? I was on that ward for 6 weeks. I suspect she died there, frightened confused and in pain.😔

I think you are being incredibly insensitive. You are talking to your DH who is dealing with his very ill mother, about what you want to happen if you become like her. You are doing this even though you are healthy and this is unlikely to affect you for many years. Timing OP....timing.

Also in the US and I'm pretty sure in the UK, you can reverse an advanced directive at any time- lots of people do it for surgical procedures where they would need to be intubated then switch back after the procedure. Knowing this might help with the "changing your mind argument".

Your husband can't enact wishes (presumably euthanasia) if you descend into dementia. Its murder, or at least manslaughter. All you can do before you reach that stage is to go to switzerland, but you must be compos mentis to consent to lethal injection.

I haven't read all the replies, so forgive me if someone has already said this, but at the moment assisted dying is still illegal in the U.K. A DNR can be put in place on your medical records ( your choice nobody can over rule) but it is that so if you have a heart attack or respiratory failure they will not resuscitate you. It does not cover end of life Palliative Care or feeding tubes being used to prolong life. At the moment you can go abroad to Switzerland/Canada and there assisted dying clinics but you have still be of sound mind to be able to access , so you generally be able to make that decision your self if you are diagnosed with an illness that you think will prevent leading a normal every day life.

@purpledalmation and @Sillyname63 read up on all the links provided over the last few pages: Compassion in Dying, the NHS link and so on. You absolutely can specify that you don't want to be tube-fed or intubated.

I believe if you write a ‘living will’ stating that you do not wish to be resuscitated etc that this will take precedence. I would just keep updating it every few years. It’s your life not your husbands!