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?

That's my plan. Or I am hoping that by the time I am in that position, there might be provision closer to home. I am and plan to remain single though so a spouses views won't come in to it.

What exactly ARE your wishes, @Chocchops72 ? It's not clear to me from your post. Do you want a DNR (which won't save you from ending up in the same situation as your mother-in-law if your heart and other organs remain strong)? A pillow over your head? For your husband to accompany you to Digitas and hold your hand whilst they inject you?

It doesn't sound like your mother-in-law's life is being extended as such. She just isn't ill enough to die yet. I dont think this is the right time to broach the subject with your husband in any case.

Dignitas can't help if you have a dementia diagnosis. They will not support anyone unless they are fully cognitively capable to make the decision. A dementia diagnosis roles that out according to their rules.

@saraclara at least one man with early dementia has ended his life at Dignitas. I assue it depends how they assess your capacity to make that decision.

You need to understand that in this country, and as the law currently stands, the only way in which you can control how you die is to take yourself off to somewhere like Dignitas in Switzerland, whilst you are still able to. If you became incapacitated, your husband by law is not allowed to help you get there, and would be charged with murder. Sadly, people can very rarely predict why and when they are likely to become incapacitated.
Doing what your father-in-law and sister-in-law are doing right now is both deeply distressing and in my opinion, the greatest acts of love there is.

If you are given a terminal diagnosis, a DNAR will be put in place anyway, so that’s one thing you will not have to worry about.

Generally speaking, a condition like dementia often ends with a chest or urine infection, due to lack of mobility. At that stage, next of kin are often asked if they want that to be ‘actively managed’ with continued antibiotics, or if it would be kinder to let nature take it’s course.

It’s always going to be difficult call for a family member to be left with the responsibility of following your wishes or desperately clinging onto the person they love most in the hope of a miraculous recovery.

You can use Dignitas after a diagnosis of dementia.

I’m in my 50s and as my own experience has shown, things can change very quickly.

One day I had my own business, very busy and in the gym every day. The next day I was diagnosed with a life threatening heart condition which needed urgent surgery in the middle of COVID. I was left with a diagnosis that has completely changed my life, had to give up work, can’t exercise as I used to. Started to adjust to that and was then diagnosed with another life limiting condition that I’m still being treated for. Both conditions have the potential to severely limit my life.

Sorry if this has already been said. For him to a actually make the decisions for you he would need to have power of attorney or be your deputy by the court of protection. You would have to make him PoA. He could apply to court if you lost capacity and had no PoA. You could make someone else now your PoA instead. If noone has legal authority to make health and welfare decisions then it is up to the professionals caring for you but they would often put quite a lot of weight on the views of a spouse (they would ask him what he thinks YOU would want though, not what he wants). If you write an advanced directive it would go a long way to counter balance this however this isn't legally binding. However with all of this we are really talking about things like turning off a life support machine or not doing CPR. In your MiL situation no-one would for example stop providing care, food, fluids etc which would kill her, so I'm not quite sure what you are hoping for if you got say dementia. You can refuse CPR, treatment for other things etc.

Yup, what PPs have said, get a Power of Attorney for 'Health and wellbeing'. It doesn't have to be your OH. You can also make specifications (that might not be the correct word) that should be followed. ie, it doesn't just hand the decisions to someone else's free will.

Actually this is not the case. My father had terminal cancer. He wanted a DNR but my mother didn’t so he ‘chose’ to not have one.

I too can see your point of view but please bear in mind that people DO change! My mum spent several years from the age of 65 telling me she was ready to die, wasn't any use to anyone etc etc. She refused to get any treatment for depression just wallowed a bit because Dad was still working and enjoying life whereas she wasn't. She refused to go to the doctors -when she had a flu jab and the nurse said her blood pressure was far too high she ignored it. She had a massive stroke five months later at 73, was seriously ill and was begging everyone not to let her die, she wanted to see her youngest grandchildren grow up, she wasn't ready yet.

if I had listened to her apparently compos mentis wishes then she wouldn't be here now and I would have refused treatment on her behalf.

Your husband is dealing with his mothers illness and impending death and you want him to think about you getting old any dying too? Come on, have a bit of empathy OP. The way you speak about your MIL is horrible. Yes she has dementia but she is still a person. She is still his mum.

My mum suffered severe vascular dementia. She was cared for in a nursing home for 2 years. We had a DNR in place. She had swallowing difficulties and most of her meds were stopped apart from liquid paracetamol. When she got pneumonia and became unable to take oral antibiotics, i had to decide whether to let her go to hospital for IV treatment. She stayed at home and died the next day, The dr said if it were their mum that would wantfor them to stay at home which I was grateful for,

withdrawing care is very different to stopping medical treatment. You cannot deny someone food and drink. You MIL is just not ill enough to die. Having poor quality of life is not enough reason to deny them basic care. Her immediate family are doing the best they can. Please be supportive.

Your statement that no one would stop providing food and drink is inaccurate. The Liverpool Care Pathway for the dying means that exactly this can be done!

It is based on the idea that the dying have ‘reduced interest’ in eating and drinking.

If you are given a terminal diagnosis, a DNAR will be put in place anyway, so that’s one thing you will not have to worry about.

No, that’s not true at all. You have to actively choose DNR.

When I was in my 50s I set in place an advance directive which I had signed and witnessed by a friend. It’s lodged in my medical records. If I lose capacity then I am not to be given any life extending medication, infections must not be treated and no artificial feeding. Palliative care only.

I’ve seen too many people existing like your poor MIL and do not want to end up like that myself. My POA for health is not my DP but someone I know will follow my wishes and I’ve got enough of a paper trail for them not to actually have to second guess the difficult decisions.

But the MIL is not dying -that’s the whole point.

@IrisAtwood I know this but I said in the MiL situation ie someone who is in a care home who has complex conditions but doesn't appear to be end of life. I'm aware that at end of life nutrition and hydration can be withdrawn and she can put that in her advanced directive but from what she's described of her MiL, I don't think that would change her being in the situation her MiL is in now.

I feel it's not great to assume that some other person - probably not family, will willingly and ably change my incontinence pads, wipe me and clean me on a daily basis for possibly years. I think we expect such a lot of our carers. Perhaps if there is not the care available that there is now we might have a rethink about end of life.

Your statement that no one would stop providing food and drink is inaccurate. The Liverpool Care Pathway for the dying means that exactly this can be done!

But MIL isn't actively dying so what happens on the Liverpool Pathway is meaningless.

Yes, doctors can decide to withdraw food and drink when someone is already in the end stages of their life - what they can't do is withdraw food and drink to speed up death.

YANBU to feel as you do, but YABU to expect DH to engage with this topic right now while his mum is in the midst of this horror. It's impossible for him to think about what he will do if you are in this situation without also applying the same criteria to his mum. Of course he is experiencing your own expression of wishes as a direct criticism of how his mum is being cared for.

Given that this is all may decades away for you, back off. Let him and his father and sister cope with this nightmare in the way that works for them, and be as supportive as you can be without judging about what you would do differently, or would want different for yourself.

Once you MIL has passed on, and after a few years beyond that because it would be crass to raise the topic too soon, you can talk to DH again about your own wishes. If he is still adamant that he wouldn't prioritise you wishes, you can get a Lasting Power of Attorney document drawn up which over-rides his status of your next-of-kin as your spouse and instead gives the decision making powers to someone that you can trust to follow your wishes - e.g. yr own sibling or a friend.

Sorry if this has already been said. For him to a actually make the decisions for you he would need to have power of attorney or be your deputy by the court of protection

Not necessarily. When my mum was unconscious with a serious infection, my brother and I were asked whether she would want to be resuscitated, as there was no DNR in place. We both said she wouldn't. That's what she always said throughout her life.

Incidentally, she recovered, and the nurse who'd asked my brother told her what he'd said. My mum was livid add to this day, tells people that her son wants her dead.
Despite her helplessness and fragility following her stroke, she now (at 90) continues to demand that every effort is made to keep her alive. The absolute opposite of what she wanted for her entire adult life, prior to her stroke..

there's no just 'letting you die' legally allowed.

There is. I have an advance directive that states that if I receive a diagnosis of dementia I’m not to be treated for any condition thereafter. Fortunately my nearest and dearest are 100% behind me and if I get pneumonia will not allow me to be given antibiotics or any active treatment.

But as people have repeatedly said, none of that would apply to this scenario anyway.

She's not being treated for infections, she's not on a feeding tube, she's not having her life artificially extended - she's just being fed and cared for and keeping herself going naturally.

But (again) that wouldn't apply here.

MIL isn't being treated for anything - she's just being fed and watered and looked after.