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?

Now is exactly the time to think about it.

You are absolutely right OP, and your husband should respect your wishes.

I think it’s important to plan these things and make sure your wishes are clear. A pp said that they can’t just leave you to die but you can refuse consent to medical treatment beyond painkillers if you lose capacity. People suffering advanced dementia often pick up UTIs/ chest infections which can kill left untreated. There’s a reason pneumonia used to be referred to as the gentleman’s friend.

I do think over the next ten years we will see assisted suicide/ euthanasia laws being introduced in this country.

I think you need to leave this topic of conversation alone for the time being OP. The amount of contact he chooses to have with his mum is commendable really. What a caring man he appears to be; trying to be there for his mum in her Winter time, when she's probably been there for him, all throughout his life (?)

It's something you can discuss at a later date.

But I know what you mean. I'm in a similar situation with my own mum and from what I've had to deal with so far, I would not want my own kids to deal with same when my turn comes. But we don't know what's round the corner at all do we!

As others have said no wonder he's upset you sound completely lacking in empathy for his poor mother and yes your conversation is basically alluding to the fact you think she would be better off dead and if you can't already see why he having this conversation given his mother's situation is inappropriate then I'm not sure anything anyone posts here is going to help you.

I'm also curious as to what you expect him to actually do about the situation should you end up like his poor mother. I
He cannot just end your life before you get to that stage that's not a thing people can do. He would have to find some way of caring for you just as his dad has done for his mother.

But again, a DNR is irrelevant in the circumstances OP is describing.

They only apply in a narrow set of circumstances - doctors can't just choose to end people's lives because there happens to be a DNR in place.

If, heaven forbid, she ended up in the same condition as her MIL, a DNR would only apply if she was hospitalised or was in a position where she needed to be resuscitated - it doesn't mean that doctors can end your life because they feel the quality is no longer there.

I think a lot of people are quite naive about the realities of conditions like dementia or MND - there's no easy way out.

Interestingly, our Dad used to say he “ Didn’t want to suffer” after seeing relatives get ill and eventually die.

When Dad became ill he actually said in a whisper as he was getting frailer: “ Don’t put me down”…

It hadn’t occurred any of to us to do that!!
But it showed how he feared we might
have remembered his requests , as he’d suggested it many years earlier.

We reassured him that of course we wouldn’t!
He chose to have no more hospital stays, and was nursed at home with a lovely team of District Nurses and family members.

I'm not surprised he's upset tbh.

But what is it exactly you are wanting to request. They won't just leave you to die.

I don't think you've thought through the practical implications for your husband of what you're asking. Signing a DNR is one thing but if you became as ill as your MIL what actually could your husband do legally to prevent you living like that, other than provide the best care possible like his family are for their mum? Legally there are very few options and it would unlikely any of them would stop you living with dementia or severe disability for a long time. A better plan would be to set out what kind of care you would prefer, and if you were diagnosed with a deteriorating condition such as dementia plan in the early stages for things that will make it smoother such as getting in home care and support or visiting nursing homes to decide where you'd prefer to live, set up power of attorney, write a will, set up technology that will make like easier.

Yabu to discuss this with him right now

as it’s really about his mum, right now

I get what you say, but do some research first. You yourself can and will decide on a “do not resuscitate “ with your doctors. This can go against your husband’s wishes.

for active euthanasia, that is currently not legal here. So a moot point.

you can give power of attorney to someone who would respect your wishes if by the time you are very old and start having the beginning of dementia euthanasia is legal. It can be a child or sibling, does not have to be your DH. You may well never get dementia. Not everyone does!

right now they are dealing with a difficult situation, it is not about you. So be supportive and privately make a plan for yourself later in life

Why should medical staff listen to him?
OP has made a decision about her own body.
it’s not for someone else to decide for her.

Maybe don't make everything about you at this point in their lives.

OP I agree with posters who say you’re not considering your husband’s raw pain about his mother’s fate (enough). I have a vivid example of a conversation I had with my MIL after my mum’s brain aneurysm burst and she was bed ridden for 10 weeks. It was beyond awful seeing her like that, my heart starts pounding just thinking about it again. My MIL then took it upon herself to start discussing what she’d want in a situation like that and that she’d like to die with her dignity intact. I was completely dumbfounded - we thought my
mum had a chance of survival (she didn’t) and I remember storming off in floods of tears feeling like I was at fault for my mother’s condition and that my mum would want to be dead.
This might not be the case for your husband in that he chose to watch that documentary, but it’s obviously painful for him and to then hear you’d rather be dead than live like that … wow. Just wow.

Consider your wishes and write them down, that’s all you can do. But please consider your audience when you discuss it.

I think it is really bad that DH would want to override your wishes, and worse that medical staff would allow him too. I’d speak to a solicitor who specialises in power of attorney / living wills to see what can be put in place. And you’re not too young either - I’m late 30s and am getting this stuff sorted now too.

I can understand why he is sensitive, though, given him mum’s condition. But it is really important to stress that how you would choose to live (or not) doesn’t mean you think anyone else is wrong for making a different decision. His family have made what they think are the correct decisions for his mum, but that doesn’t mean they’d be the right decisions for you.

I agree I think you are being naive as to exactly what can and can’t be done. A DNR is set in stone no medical professional can go against it. But your MIL may very well have one of those. But they can’t actively hasten or speed anything up

Beyond that as a PP said we don’t have legal euthanasia and if you felt you were on a path to end up in a situation the choice would be yours to investigate and take options before ending up like this.

she isn’t on life support where yes you can make it clear that isn’t something you want. Any measures that are actively keeping you alive can be withdrawn. You MIL has none of that

I think give it a bloody rest with these morbid hypotheticals while he's coping with the demise of his dm.

Firstly you're being extremely insensitive raising this when your MIL is in a similar position.

Secondly, unless the country you're living in has some sort of euthanasia policy then you would have to be looked after in some way as doctors cannot withdraw life sustaining activity (food/water) unless you're in the late stages of actively dying.

Many of you don't seem to understand the process

A DNR (do not resuscitate) now called Respect, is not there to kill off the elderly person when their son or daughter thinks it's about time they died. Doctors will only NOT resuscitate when a resuscitate situation occurs. My Parent has had a Respect Form in place for 5 years. No resuscitate situation has ever occurred

You can have a LPOA in place with any number of wishes about your future health and death. Doctors in the UK are not allowed to kill you. So you can ask to be allowed to die when XY and Z happen. But unless you yourself CHOOSE to die, no one can help you to die

As I said earlier, my Parent is on palliative end of life care, no medication given

Chances are they will live a very long time. Or maybe die today? And what could I do about any of that, legally?

It's a waiting game

It makes me unalterably sad. But there is NOTHING I or the Doctors can do. Even with a living will, a Respect Form, and the Doctor stopping ALL medication.

If you are serious about this, OP, the only way forward is euthanasia, overseas

I think everyone jumping on the OP needs to stop. It's impossible to understand intonation in typed posts but I fully support your thought process in this difficult situation. I have a father with Parkinsons and dementia - living in a fabulous care home but a completely different person to the active, fulfilled life he had. My mother has died. We (the family) visit a lot but he is a shell of his former self. I also had a best friend descend into the most horrible illness before dying. She was my age.

If this happens to you it makes you think A LOT about your own mortality and what you might want to happen. It's not being insensitive. My DP talks about it. I talk about it. My friends talk about it. Just occasionally - we're not full of morbid thoughts by any stretch. I know what I want to happen. So does my DP, And we will ensure any Living Will is completed so end of life is made as easy as possible for those around us. Not just to do with DNR wishes but all of the paperwork to needed to make decisions on behalf of the other around estate/money/etc.

What would you hope would be done for you instead of being in your mother-in-law's situation? They stop giving you food? Or water? Stop all medication including pain relief? Or just stop personal care and adjusting your position? That I guess would speed up death but it would still be drawn out and horrific.

Unless you plan on taking yourself to a clinic in Switzerland I can't see how your husband is doing anything wrong. You're basically asking him to neglect you or kill you. Neither of which is ethical or legal.

I dont think your being unkind towards your MIL. However I do agree with that it's not the time to discuss this with your DH as its HIS mum.

I think you need to realise though that someone like your MIL has no other choice. What do you expect the nurses to do with her?

Regarding the FIL I agree with OP perhaps he is overwhelming and he shouldn't expect the family to centre about his wife. Perhaps others are struggling to cope too. It's about balance and it does sound a bit much I guess he will be lonely and rightly so.

Not in the UK so may be a bit off in terminology etc.
Create an advanced care directive
Nominate someone other than DH as you enduring power of medical attorney (where I live medical and financial POA are separate processes, can be the same person). This only kicks in when you are unable to make decisions about your care.
The ACD can be very detailed e.g. if in a car crash next week allow for reasonable period on a ventilator and chance at recovery
Not for heroic measures for treatment of cancer if already have a dementia
*always consent to getting your femur fixed even if you are bed bound as it is a horrendously painful way to die.

Being abroad in a situation like your MIL is challenging and your DH may be unable to understand exactly how little quality of life his mum has, FIL may say...o she has just nodded off, where as in fact MIL has been non verbal for a week. Is it possible for a visit to see her for a week?
This is a horrible situation for your DH and DS to potentially one day have to deal with if DS know your views and DH is advocating for aggressive treatment. It could destroy their relationship. Get this sorted.

You can also send copies of your ACD to your hospital record, give your GP a copy, have a medi alert bracelet with the info.

I live in Australia, and we have a legal document called an Advanced Medical Directive. I believe that this along with a Medical Power of Attorney (which can be someone you appoint who is not your DH if you choose) can override his decision.

I have made my wishes known to DH and DCs should I become completely incapacitated in any way and they accept that I have no wishes for my life to be extended at all costs.
i don’t think that’s inappropriate at all.
However, in your MIL’s case she’s clearly being very well looked after and , as euthanasia isn’t permitted, until she develops pneumonia or something requiring medical intervention, that’s all that can be expected.

I'm with you on this OP, and I think these things do need to be discussed and there is never a right time for some people. What your MIL is going through is my idea of hell, and I have planned my own suicide if my faculties start to go. My partner is on board with this, and tbh, it would be a deal breaker if he wasn't. Good luck OP, I think you're being very sensible.