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?

Why are you wasting so much time and energy on a situation that hasn't even happened yet? Talk about morbid...

So did my dh
Which is why my poa is my eldest son

Because when it does happen it’s too late.

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.

No, she's not. She's watching what's happening with his mum and she's saying 'I would like something different.' That's a choice made on a rational basis. It's not that she's looking for a fight or being oppositional. She's just saying what she wants for herself — and she's perfectly entitled to do that. He's entitled to disagree but she's an independent human being entitled to her own decisions and actions.

You can plan whatever you want. But where YABU is to push these conversations when you know the situation with your MIL. It's very insensitive and cruel. You imply your DH is seeing connections that you didn't make but you are making those subconscious criticisms and then pushing them on to him. You're also making this a flashpoint in your relationship when neither of you are in a position to think rationally.
You - because you obviously hate that your MIL is in a home and FIL visits her, and your DH calls. Him - because he's struggling with all those decisions about what is best for his mum in RL not in a theoretical hypothetical future discussion.
Put your wishes in writing. Complete the relevant paperwork. Leave your DH out of those conversations whilst he is struggling with his DM's health and her imminent loss. (fwiw your half-existence comment is ridiculous and not backed by research - as is your assertion that your MIL will live for years and years). You do realise you're also raising a question in your DH's head that you will push your agenda on to his end of life care or if he has a critical or terminal illness. I can't quite believe how insensitive you're being.

Yes, but that’s a different issue. The very fact of needing a tube to eat, drink or breath does not of itself mean you are actively dying. You can of course refuse to at least eat or drink at any point in life -unless you are deemed mentally ill.

Well her 'own decisions' actually involve another person's hence the op

Unless I had something wrong with me now I would at least wait till till the dh has to finish go through what he is to make it all about me

Time and place

His mother seems to have been deteriorating for years and as I know with my own MIL, may still have years to go. Are you seriously suggesting that any mention of dementia or terminal illness has to be suspended until she's died?

The Advance Directive or the POA only applies when you are extremely seriously ill or incapacitated. FFS! If you go into hospital for a standard procedure and everything else is okay but you need breathing or feeding support for a while, of course the AD or POA isn't invoked. It's when you've had a massive stroke, or a car crash, or you've fallen off a ladder and broken your neck and caused permanent brain damage that there's no coming back from — that's when the AD or POA comes in.

Well lets hope other people have a bit more empathy than you. Roped into talks. What a chore for you.

I think there's literally nothing crueller you can do to someone than refusing to try to advocate for what you know their wishes are at a time like that. I'd be deeply concerned if my spouse said they wouldn't respect my wishes. I'd rather die years "early" than a week too late. It shows a total lack of respect for you as a human at the most basic level to refuse to go along with what you want.

Also, interested to know where people are getting their crystal balls from to say this is decades too early. Life can and does change in the blink of an eye. I've got my paperwork set up in my 30s, and will keep re-signing it to show consistent wishes over a period of time as long as I am healthy enough to do so.

What are you talking about? The poster made no mention of advance directives or being seriously ill. They just said that if you need a tube to breathe, eat or eat that you actively dying -which is completely wrong.

I had the opposite of this with DM. She always wanted to live as long as possible and have every opportunity to achieve this, which I was happy to support.

Where we disagreed, was over resuscitation. She feared being left to die. As a palliative care nurse, I could not in all conscience agree to brutal CPR on a frail, osteoporotic 90 + year old, knowing the chances of success were minimal.

I understood her fears, but couldn't ignore my knowledge and experience. In the end I ducked it and refused to have POA for health so that I could leave it to a best interest decision by her medical team. When the time came, I was able to represent her wishes, knowing the decision would be made based upon medical futility.

OP, what I would say is that it is good to talk about this. You can absolutely leave a living will, but understanding why both you and DH feel strongly about your positions is important too. Strong opinions around death often come from fear, experience and frequently, unresolved grief. It's worth considering if there is anything to unpick here.

@coffeecupsandwaxmelts @Keha @Verylongtime

I understand what you mean about the OP’s MIL, but read the statements as applying across the board. Most people don’t know about the Liverpool Pathway, so it is useful to clarify it.
But thanks for your replies.

To OP, I do think your DH should respect your wishes. I understand that he is upset about his mum, but your wishes pertain to just you: not him, not your MIL/PIL or anyone else. FWIW, I also think that it's a good idea to talk about your wishes now. If you were to wait until your poor MIL passed away, that could be years. Who knows what could happen to you between now and then (hopefully nothing!). Often families will start these conversations when someone they know becomes incapacitated or suffers a significant medical event.

I'm a nurse. Both my parents are now deceased, but when they were alive, they made it very clear to us what their wishes were should they sustain any major medical event. For both of them, during their last hospital admissions, we were able to make sure those were upheld. Do I miss them and wish they were still here? Yes of course I do, every day. However, I am glad that neither suffered and neither lingered for any longer than they would have.

Seeing them at the end, made my siblings and myself talk about what we wanted for ourselves (healthwise!), ensure our own wills/life insurance/death admin etc are up to date and we have all made ADs. Mine is in a bottle thing in my fridge. We do need to sort POAs though!!

^but that is my family. Every family is different in their approach. Your family and my family talk about these things. Your DH's family doesn't.

I think your best bet would be to sort out your own AD and POA now (assuming you are in the UK), make sure you have copies filed in relevant places, and maybe have someone other than your DH named as your NOK (and on your POA paperwork, and make sure that they have copies of AD).

Just checked, and the Liverpool Pathway was withdrawn.

However, all that means is that Drs can’t apply a specific pathway. They can however make clinical decisions based on the perceived condition and prognosis of the person. That can include not providing hydration and nutrition. The latter seems reasonable to me when a person with a clearly terminal condition is not interested in eating or drinking as this seems to be a natural part of the dying process.

It's not unreasonable for you to be scared of a similar fate. Or for you to look into what your legal options are.

But your MIL didn't choose to be this unwell either, and now she's in this situation her family are just trying to love her as best they are able and don't have a lot of options.

So you do need to be sensitive to your DH.

You can't really identify out of this one by saying "not me". There are things you can do but there are limits. We can't have complete control over our lives and your fear is basically about that but it was always an illusion that you had it.

Beyond the steps people have mentioned about asserting your wishes, I think one thing you can do is to look at preventative lifestyle changes that may be applicable to you, making sure that you are taking care of your nutrition, activity levels and learning new things to extend your years of health.

A healthy 50 year old could have another 40+ healthy years.

Taking care of your finances so that you have the money to pay for the kind of care you'd prefer is a good idea too.

I think the comments talking about suicide are pretty irresponsible - a botched attempt could hasten you into exactly the kind of situation you fear.

The OP mentions Advance Directives in her first post and this (or a POA) is clearly what she's talking about — a written statement laying out how you would like to be treated (or not treated) in certain circumstances. You set out the circumstances yourself. So you can say that, for example, if you were to break your neck and become quadriplegic, or to suffer brain damage that made it impossible for you to communicate or do anything for yourself, you want treatment such as antibiotics and vaccinations to be suspended. You set the parameters. This tells you what you need to know:

https://www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/

I note that the name has changed since I did mine, a decade or more ago. It's now an advanced decision or an advanced statement. Perhaps I need to revisit mine and make sure I'm up to date.

The logical implication of what you're saying is that the MIL should be killed or starved to death. She's not being kept alive artificially, by a machine. Her body is keeping her alive, and she is being cared for and made as comfortable as possible.

The people commenting that the MIL should not be kept alive are implying that an elderly woman should be actively killed or starved to death. This is not a case of turning off a life support machine or withdrawing medical treatment. The woman is living, and is simply being fed, watered and cared for. The comments include people who are, by implication, suggesting an elderly woman be murdered or deliberately neglected so that she dies from lack of nourishment and care. This is abhorrent, illegal and could be interpreted as an incitement to violence. I am very concerned about this thread.

No, it wasn’t the OP who said it, though, that needing a tube to breathe, eat and drink meant you were actively dying. That’s not true. It was another poster completely.

My MIL lived with dementia in a care home for nine years. My mum had her devastating stroke 14 years ago and has been in a care facility ever since.

I didn't and don't expect anyone to not mention or not want to discuss their plans regarding living wills, DNRs or POAs because of my MIL and mum's situations. Nor would I have been offended by such conversations with others when my husband was terminally ill. It's these situations that make us consider our futures and what our own partners or children might have to deal with.

Time does not stand still, nor do shit situations stop happening to us and others while we deal with existing shit.

I agree with @Babybunting123 & @Verylongtime also my experience of 4 grandparents with dementia plus caring for patients with dementia at times has shown that although their personality changes, they can often be quite content, even when bedbound as long as they have good carers & loving family around them like MIL does.
It's strange how the brain adapts. Obviously it's not the same for everyone but it sounds as if MIL is ok for now!

Whereas my Nan had the kind of dementia where she had psychosis which was treated with covert medication... from being like a lost soul she did become a happy person before she passed away.

You said you're abroad. So legislation in UK doesn't apply to you there.

IN UK, anyone with mental capacity can creat an advance medical directive specifying what treatments they would refuse in certain circumstances. They can get it witnessed, and lodged with their GP, specialists, POA etc. (So husband couldn't hide it)

It can include a DNR /no CPR clause.

In UK, anyone with mental capacity can give formal Power of Attorney to a (consenting) third party , regarding their health and welfare, and that person need not be your husband. It ony makes sense togive POA to someone willing to protect your wishes and intentions. It can still hold after you lose capacity/ become too ill to communicate etc.

https://www.rochelegal.co.uk/resources/help-guides/do-not-resuscitate-dnr-decisions/

Your DH may not agree with your choice, but the choice is still yours.