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 are right, and we need to have these open and honest conversations with our loved ones. Maybe one day in the future assisted dying will be more acceptable. Its all very hyperthetcal, there are lots of ifs. You seriously need to rethink your timing though. You can't be pushing this when you mil is in exactly this position. Your DH knows that it's crap, but there is nothing he can do about it, and by hammering home the point that you wouldn't want to be in his mum's position is insensitive.
As for the weekly Zoom calls, they are the least he can do for his dad and sister. They are about supporting them.

*hypothetical!

The thing is, his family is currently coping with his mother's condition as best they can, and you are effectively looking on in horror and saying "Although I am a healthy 50 year old I would like to focus on MY future and promise that what is currently happening to your mother will not happen to ME. Because it looks AWFUL, and I think your family are doing it all WRONG."

The truth is we have very limited control over what happens at the end of our lives. I don't think you should be forcing him to discuss it at this point, just for your peace of mind.

It is NEVER too early to consider these things. Everyone thinks they are in good health, no point making wills/advanced directives yet, etc
But illness and accidents are not discriminatory; if you had a massivexstroke today, what would your wishes be? How will your goods and chattels becdistributed? Will you be kept in a twilight state for years?

I totally agree with you. And of course his mum would be better off dead. And of course it's really painful for your dh right now.

So take action on your own behalf and ratger than asking him to do something he finds so difficult, focus on supporting him with this awful, painful situation with his mum.

Write a living will. The more specific you can be, the better. Frankly, the generic ones you get off the Age Concern websites aren't much use but doing one of those and getting your GP to scan it into your medical record is certainly better than nothing. Remember that it only applies after you lose mental capacity to make your own decisions anyway. After that, your consultant or your GP makes the decisions, unless you have given LPoA to someone. Dont give it to your DH if you fear he would be unable to represent your wishes; I'd have to advise my dp to give his to someone else if he wants lifeprolonging treatment at all costs, I would find that too bloody difficult. It's the default anyway.

An advance decision is legally binding. Compassion in Dying has a good template. Mine is registered with my gp and my solicitor has a copy too. Your dh would be hard pressed to go against it. And set up power of attorney with someone who will respect your wishes, eg one of your children or a reliable friend.

Can you not read? I have not said she doesn’t need to consider it. I have wondered why she is thinking quite so hard about it. And clearly debating it with her husband right now considering what he is currently going through with his mother.

The thing is - once your faculties start to go, you're probably going to be incapable of going through with a planned suicide.

So, short of asking your partner to kill you themselves, there really isn't much of an alternative to just, well, living with it.

And that's the reality of illnesses like dementia and MND and Alzheimer's - doctors and relatives can't just decide to end your life for you. You either need to be in a position where you're actively dying (so they can withdraw any treatment which could prolong your life), or in a situation where you die in surgery - in which case they just wouldn't make any attempt to revive you.

But in a situation where you're eating and drinking, breathing unaided and even capable of occasional conversation - none of the above applies and they're required to keep you comfortable and pain free, even if that means you live like that for another ten years.

It sounds like he is grieving for the person his mother was and that the topic is too raw/ close to home for him to address right now. I can see how your adamancy you wouldn’t want to live if you were in the same state as his mother or place any caring responsibilities on family could come across to him as judgement on his family’s situation. It is very clear in your post you think his mothers life is worthless and that she’s a burden which must be heartbreaking to him.

I think you need to have more empathy for his situation, you either need to change the language you use when you discuss this so you avoid implying that a life with dementia would be pointless and a burden and therefore that his mother’s life is pointless and a burden or you need to wait to discuss this in the future when his family’s situation has changed (likely from the death of his mother).

They don't take care of the mother. She is in a home
And you can be on an end of life care plan
The family are 'keeping her alive' for their needs, not their mothers.
People need to accept that sometimes, quality of life is so crap for their loved one, that hanging on to them is so very selfish, and that they should consider how their loved one might be feeling
And no-one has the right to go against a person's final wishes. If they do, they are the most selfish of people

Your description of your MIL is really cruel. She's a human being whose life is as precious and valuable as yours or mine.

Why are so many people saying now is not the right time? OP's MIL may have been in that state for years already and may have a few more years. Is OP not allowed to think of herself in that time? WTF? There is nothing wrong with making plans for our end of lives, and funnily enough situations like that of the OP's family are likely to invoke reflection on one's own end of life.

OP, As a PP has mentioned, please write an advanced directive, declining treatment like antibiotics if you have dementia or a serious stroke in old age. Get it signed by a friend and give a copy to your GP. I got a template from Compassion in Dying.

I think you really need to separate out how you want to be treated and how his mum is being treated. Talking about all this at the moment is inevitably going to feel like a comment on his mum (and from your post it's clear that you don't approve of how she's being treated). While I'd usually say it's better to act asap on these things (you could get hit by a bus tomorrow etc) I actually think that in this case it might be better to wait.

The family are 'keeping her alive' for their needs, not their mothers.

Genuinely - what options do you think they have?

She's eating and drinking (with help) and breathing unaided. Unless someone goes in and actively helps her die, there's very little that can legally be done right now.

Even with a DNR in place and an end of life plan, doctors can't just stop feeding you, giving you water or caring for you. It doesn't work like that.

Does everything always need to come back to you op?

The family are 'keeping her alive' for their needs, not their mothers.

This is a vile thing to say. What exactly do you propose they do, smother her with a pillow? She's not being kept alive she is alive and until the point where she needs medical assistance and life support what do you propose happens to her.

And this is exactly what me and my sisters have all done! We have access to each other’s advance directives, just in case our husbands don’t feel able….

I know they aren’t legally binding, but we would absolutely hand them over to any medical professionals involved,and strongly advocate they are followed.

The MIL isn't on life support, so what you're essentially implying is they should consider depriving her of food and water. That's a very dangerous line to tread.

The family aren’t “keeping her alive”, though. The MIL’s body is keeping herself alive, with carers. There’s no real medical intervention, just nursing care. What do you propose happen to the MIL?

He might be feeling guilty for not being there for his mother, he might be transferring his own feelings on OP.

The thing is though that OP's decision might also be influenced by the way her MIL exists at the moment and not wanting this for herself. It's brought it home and she wants a decision for herself. Her DH is not right to want to control her body.

People saying you’re being unreasonable are wrong.

Yes, it seems insensitive to bring this up now, but the reality is that seeing someone in such a state of ill health inevitably brings up the thought of our own mortality and what kind of life we would or wouldn’t want.

And the reality is that we’re all just a car crash away from that life. It’s not only dementia which leaves people in what amounts to a vegetative state.

Death is something we don’t talk about enough. That is why 50% of families who are unaware of their loved one’s views on organ donation refuse to give permission for organs to be donated even if that person is on the register. But that figure drops to 10% if wishes are known.

We’re all going to die. And most of us don’t know how or when that is going to happen.

So we all should be having discussions with our loved ones about our death as if that could happen imediately. Because the reality is that it could.

You can create an advanced directive and a DNAR which will be recorded on your medical files, and while you cannot request for your life to be cut short you can make it very clear that you want no heroic measures in order to prolong your life in the event you end up in a debilitated state. That doesn’t necessarily mean that you won’t end up that way, because if you do and you don’t fall ill enough to die then you will still be there, but it does mean that if you do fall ill then any treatment prolong your life can be refused.

Ultimately you’ve had the discussion now, it’s up to you where you go from here. I would write up the advanced directive and simply tell your DH that it’s done and that’s what will be happening. And then leave it at that.

More people should talk about this with family and spouses early. You never know when you might be in an accident or have a life changing medical episode etc.
I'm in my 30s and good health and my DH and best friend are aware I would chose to be removed from life support should thay be an option due to a catastrophic incident. They also know my views on euthanasia.

A good friend in her 40s had a traumatic brain injury she was almost completely unlikely to recover from, and it caused no end of distress amongst family members trying to decide what to do. In the end her body made the decision for them but it would have been a small light in a dark time.for them to know that they were enacting her wishes. They've now all made their own intentions clear to each other as a result.

OP - I'd keep some kind of signed document in an easy to find place. It probably eouldntnhave legal standing, but it might tip the balance. Also discuss it with other people, who might be able to sway your DH should he be looking to negate your wishes. When discussing it with him, face the issue with his mother head on - "I'm not applying this to everyone, they all have a right to remain alive in whatever circumstances, but I am expressing an important opinion that regarding my own body and mind, I would not wish to be alive in a circumstance where only medical intervention was extending my life. I am putting no judgement on those who do, but I beleive everyone should have consent over their own bodies and their future".

Unless the law changes there's nothing you can do. You can't just decide to die

Are you always so fucking rude @Mortimercat ?

You need to create a living will. If your husband doesn't want to respect your wishes, then make it so he has no say in the matter.