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 need to make it clear to DH you are not judging his family and what they're doing. Your wishes are completely separate and personal to you.

The situation with his Mum has emphasized to you that it's not what you want.
But, because of his MUM he is currently unable to 'hear' you.

I'd make a Will & make an Advanced Directive.
Hopefully you will not need it for many years, by which time his Mother may have passed & he'll have had time to process that, & be able to listen to You.

Loads of people can’t eat or drink without a tube. It doesn’t mean they anywhere near dying, though.

I can't put this in a 'you/him is right and the other is wrong' bracket

There is too much grey area of legalities and others things I can't really word exactly

Surely much of your reasoning depends on actually being aware you are living a half existence? You are talking from a perspective that you would be aware you can't walk, talk, communicate or feed yourself. What if you don't even know what's happening to you? What if it's only the people left behind who are aware of what is happening to you?

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.

This made me feel teary. Really beautiful to be honest and I would do the same for my husband until he passed in that situation.

In the U.K. euthanasia isn't legal so I'm unclear what OP would be asking her partner to do in practice...

Agree with this entirely - living wills or other kinds of pre-illness legal documents are only legally binding in a limited way. They can't speed up death, only refuse certain treatments that may prolong it, so if you're not suffering from anything that's going to kill you in that moment that you're allowed to refuse (in the UK you're not allowed to refuse everything anyway) then there's not a lot that a piece of paper can do about that.

It often doesn't work out the way you want even if he agrees to your wishes, so I wouldn't get too worked up. My father had a 10 page DNR signed before an operation and he phoned me up and asked me to promise he wouldn't be left as a vegetable and didn't want to be connected to life support in a worst case scenario. Unfortunately, he deteriorated before the operation and in the moment of staring death in the face, agreed to the paramedics resuscitating him whilst he was still conscious. He would quite definitely have been a total vegetable if he hadn't mercifully died after a few days on life support. I am grateful every day.

I think your timing in discussing this with your DH isn't great but I can see how watching a dementia patient can focus your mind on such things.
I believe your DH is being unreasonable if he doesn't follow your wishes but he's in the thick of it at the moment so he might change his mind on reflection once it's all over.

The whole point is that you're not killing someone - there's no pillow being held over their face.
However should medical intervention be needed when the decision is made by others - doctors or POAs - your wishes are known.

I've set up my POA for Health & Welfare. Plus my advanced decision states that if I lose capacity through dementia or a stroke or any other illness then it's palliative care only. Vaccinations should be refused. Pain relief is allowed.

I watched my mother die with Alzheimer's. Her body was strong but her mind was worsening.
For the last few months of her life she was bedbound or in a high tech wheelchair that supported her without pressure sores & enabled her to leave her room.
She was in a nappy & needed hand feeding but still had a voracious appetite.

She still enjoyed music, food & going in the garden in her chair but her ability to communicate was a few words & a lovely smile.

After a massive stroke, we had the way out. The GP & her care home were aware of the advanced decision. I did the Respect form with the hospital.
The exact timing & usage of palliative care had been decided by my mother nearly 8 years ago when her diagnosis had been confirmed. We were able to give her pain relief via morphine patches just in case but that was it.
This decision meant she returned her care home & was looked after by myself & the carers until her peaceful death.

Now that is what an advanced decision is all about. Nature was allowed to take its course with support & care.

Your husband needs to follow your wishes.

I agree entirely with you, OP. I've had relatives who've gone on for years in care homes, just about kept alive and utterly miserable. I also have an acquaintance who, in her early 40s, suffered massive brain injuries in a car accident and was kept alive despite her family's requests for her to be allowed to die. 14 years on she is warehoused in a unit with others in a vegetative state or minimally conscious, as she is. Because medicine has improved so much, there are thousands of people like her being kept alive all over the UK. Unable to do anything for herself, unable to express herself. And the family have now been told that she may live into her 70s or 80s. It's a terrible burden for them and she would have hated it — the waste of resources, the lack of autonomy.

I drew up my own Advance Directive after what happened to her and so has my partner. Fortunately we both agree on this and we would both honour each others' wishes even if we didn't. It's shocking to me that you can be so certain of this and he would say he won't do it. Loving someone involves respecting their autonomy.

You have to lodge your Advance Directive with your doctor and also with your solicitor and a trusted member of the family, so I'd ask a sister or someone else who will honour your wishes. I'd talk to my doctor about your husband's objections and make it plain that you don't agree. I'd add a letter to each of the ADs saying that you know your husband doesn't agree but these are your wishes and your trusted advocate (sister, brother, close friend) is the one they need to talk to.

It strikes me that your husband has things very easy with regards to his mother's situation and might think differently if he was the one having to visit her three times a week. The idea of having thought carefully about how I'd like to die and having my decision overriden by a partner who has never actually had to deal with the practical side of someone in slow, helpless decline horrifies me. He's able to be in denial of the awfulness because he's escaped having to be deeply involved in his mother's care.

I wasn’t referring to the MIL. Its too late for her sadly.

This is for the OP who does need to do something now if she wants to make sure her wishes are followed. Although in your 50s ypu should expect many years of healthy life, strokes or other serious brain injuries can happen at any time

@coffeecupsandwaxmelts so if someone cannot feed themselves, they can be left to day, surely that isn't the case?

Nellodee · Today 06:09You’re not going to be in the same kind of state his mother is in the next five years. Let him deal with that before making things about you”

Quite. So insensitive. I feel the same way but sure as hell wouldn’t raise it in his current circumstances.

But if they refuse to be tube or peg fed then they will die of dehydration within a week in most cases.

I think you just cannot ask someone to help you kill yourself. You just cant. Your husband is currently dealing with his mother deteriorating and youre stressing him out trying to get him to agree to something massive that is a really bloody sensitive subject right now.
We do not have legal assisted dying in the uk, and im pretty sure noone has 'the desire to live like that'.
Yes its horrible to see how people can deteriorate when elderly and ill.
I would be in favour of legalising assisted dying in certain situations, but if you are concerned about it, maybe get involved in campaigns about it rather than asking your husband to promise he would break the law and kill you when he doesnt want to even think about that and is currently going through this with his mother.

What a stupid comment.

I don’t really understand what your problem is OP.

Assisted dying is not legal in the UK (assuming you’re in the UK). So what would you like them to do with your MIL - put a pillow over her face? Is that what you want your husband to do if you too become sick?

Unless you’re planning to fly off to dignitas when the time comes I think you’re deluded as to how much day you have over your own death. I can say having been through this recently with a loved one: you get very little say at all.

why not?

things can change very quickly, and this is how families end up in the shit because someone drops dead from a heart attack, car crash, or is diagnosed with advanced cancer and dies within weeks.

better to sort it while you are of sound mind and in good health.

my mum has had a DNR in place since her early 60’s. We are all aware that does not mean “do not treat”- she will get every treatment and care available, but should it come to “heroic measures” ie CPR or life support in futile cases just to eke out a few more days she absolutely does not want that. Plenty of drugs for a pain free death. She is perfectly healthy now, but say she had a stroke tomorrow we know exactly what level of intervention she wants.

o/p does your dh understand the intricacies? A lot of people think a DNR means leave someone to die but it absolutely doesn’t. You should discuss at what point you don’t want intervention- life saving yes, but life prolonging? If it comes to eg. A ventilator and death in a week or no ventilator and death now, does he understand you don’t want the extra week? Cancer treatment to give you an extra month of side effects hell, or no treatment and death in two weeks of reasonable quality of life?

that sort of stuff?

anyway you need a solicitor. Get it drawn up anyway, it will aid medical staff in their decision making and make it harder for him to contradict.

Leave it. Husband is a snowflake.

I have a mate can sort it for you. You won't know the time or the place. It will just happen. A monkey and its done.

😂

You've completely misunderstood what the OP is asking for. She's not asking to be killed. In an Advance Directive you say what you do and don't want should you have, say, a major car accident that causes brain trauma, or a stroke, or dementia.

I've listed the kinds of situation where I would not want to be resuscitated or attempts made to keep me alive. So, if I'm extremely incapacitated, if I'm unable to enjoy the things that give me pleasure I've said that I don't want antibiotics to treat pneumonia etc, I don't want to be kept alive with any form of artificial feeding and hydration. If I go into cardiac arrest or stop breathing, I want to be allowed to die.

There are things worse than death — for me that includes being helpless, incontinent, unable to do or hear or see the things that make life worth living. We treat our ailing, ancient pets better than we treat people. We put pets in pain out of their misery.

You can make a Power of Attorney regards your health and welfare and you choose who has the power to say what treatment you wish eg only the doctor.

See this https://compassionindying.org.uk/how-we-can-help/health-power-of-attorney/

That response to Branleuse. All the other people who are confusing an Advance Directive with assisted dying need to do some research.

It looks like your approaches are very opposite. Of course you can discuss things but at the moment it does look like you are actually telling to your DH : look, this is the right approach, you are doing things wrongly with your mum. And it’s upsetting for him.