Father gravely ill - mother reluctant to continue treatment

[Kettlebanana]

We are currently in a hell on earth situation as my father is gravely ill in intensive care and on life support. It’s more likely than not he won’t make it through and questions about how far we go with treatment are starting to come up. I think we as a family all agree quality of life is important but it’s becoming clear that my mother isn’t willing to see that if he does survive, whilst he may have difficulties/not be as independent, his happiness in life will need some support from us all. My father does everything for her and she can’t conceive that, in the remote chance that he does make it, they could still have a decent life but it would need her to step up i.e take on driving/taking him out etc. There’s no health issues that would prevent her from
doing this and they are not quite ‘elderly’ and I’m quite appalled that she doesn’t see that he won’t necessarily be miserable if we all make an effort together. Obviously none of us would want to see him in a situation of needing round the clock care but she’s literally talking about a situation where he might need a wheel chair meaning we shouldn’t push on. It’s becoming clear they’ve also never actually discussed this and so we don’t know what he would want. I just cant believe this is all really happening and completely lost. We’ve been in hospital for 4 days straight and I’m conscious none of us are thinking very clearly right now.

I am sorry, that sounds really tough.
Your Mum is focussing on what her life could look like and she does not seem to want that future for herself. It's great that you all say you would help and I am sure you would but it would be her dealing with the day to day reality of things
I think you should just be led by his medical team but I do think that sometimes we (understandably) try to hold onto people we love when it could be better to let them go.

This sounds tough but I'm not entirely sure what you're asking? If you're asking whether you should be signing off on "heroic" efforts to save his life, I think that only the family can make this call. But it's not like care will be withdrawn except in the most extreme of circumstances.

So if he makes it through the next few days, as a family you can work out what to do next. It can be a very overwhelming and difficult, and the uncertainty is a nightmare for you and your mum and the rest of the family so give yourself a break and just take it a day at a time for now.

Honestly, I’d leave it for now.

It sounds like this isn’t something you need to do immediate planning for, so it’s not a fight you need to have. And no one (understandably) is their best self right now.

Concentrate on what will help your dad now, and cross these bridges if and when you come to them.

In my experience, when the medical team start asking about how far you go with treatment they are already thinking that it might not be in his best interests for treatment to continue much further. Ie that further treatment may not save him, or may leave him alive but with a much reduced quality of life.

And the only consideration is his best interests - what would his quality of life be like, what would he want if he could express his opinion. Is "he won't necessarily be miserable if everyone makes a big effort to be his carer" what he would want? Dependence and poor health are what I dread most for my old age.

I know this is brutally hard to navigate as everything is so uncertain ❤️

I am so sorry that you're going through this. From your post it seems as though your DF may not live much longer and that's really hard to face.

And it's possible you're clinging on to the possibility that he could survive and would need support. And that would come from you all but also your DM would have to be a carer whereas right now your DF is a big support for her.

This is understandable because you want to more than anything to have your DF alive and well. But you've said he's on life support in intensive care which means his chances are very remote.

Your DM may be further along the understanding that he will die very soon and may be facing this pragmatically and practically. This is understandable because he's her husband not her dad and women often have more intense relationships with their dads than their husbands. And if he does pull through then she'll have to be his main carer all the time, during the night, at the difficult times when you can't be there.

I wonder if you are having a bit of wishful thinking that if you all try very hard he won't die and it will be fine and you won't have to face your dad's death just yet.

This is a part of grief. It's the bargaining stage - he'll live if we all rally round and help. It's normal. And it's sad.

Talk to the doctors and see what they say. Most doctors want pain relief and a good death rather than special measures. The best outcome for your dad may be to let him go. And that's really hard.

Expecting your mum to be thinking logically at this point, is unrealistic. You're expecting too much.

Although they may not have discussed this in detail, assuming your DM and DF are in a loving relationship, it is very likely that your DM knows his wishes best.

While they may not have had an explicit conversation, over the years most people will have talked about friends/relatives or even TV dramas with similar issues and given hints of what they would want. If your DF always looked after your DM, he might well find a situation where he was being looked after instead intensely distressing.

And sadly if doctors are starting discussions on limits of treatment, they likely mean they do not expect additional treatments to work.

Am so sorry, this sounds so deeply traumatic and unexpected for all of you.

It is fully, fully shit. I’ve always been dreading this as my mum will expect us to pick up where my dad left off and pander to her and yet she cannot see a life where she might have to look after him, even just a bit. It’s already starting whilst we sit and wait for updates and she has already said she is going to be hard work as if it’s funny. I think that’s what’s jarring to me at the moment.

Gently, would her point of view on this be that you are unable to see the severity of the situation, and are not being realistic in your view that this might end with him being basically fine, just needing a bit of extra support.

Just to re state what everyone else has said, that if they are already talking about your father not pulling through, then he probably won’t. I wouldn’t bother too much now about what your mother is saying. She is probably too upset to be talking rationally. You can have conversations with your mother later which ever way the outcome is.
I have already had a conservation about my end of life with my children. I haven’t written it down but they know my wishes.

You do not have to look after your mother. One of the things I have told my children is I don’t want them to look after me.

You seem to be critising her for thinking about the support she might have to offer him at the same time as complaing about support she might need from you?

I agree with PP, if the medical team are offering choices, they're thinking continuing treatment isn't in his best interests.

However big a loss your DF will be to you, it’s is nothing to what your mother will suffer. Have a little compassion for her as she struggles to cope with the grief, loneliness and dread of her own inability to instantly assume responsibility for all the things DF did in the relationship.

It doesn't matter what she says at the moment. Nothing she says now about being 'hard work' will force you to be running around after her every whim two years from now. In the future, you can choose how involved you are and stick to your boundaries. Right now though, I would just assume this is a bad joke in a terrible situation.
Does she have sole PoA? If not, I can't see how she'd have the decision making power to 'let him die' against medical advice. This situation seems unlikely to arise.
I appreciate it seems like she is being unreasonable not wanting to be a carer for someone she loves greatly (assuming their marriage is absolutely amazing), but you can't make her, and she is allowed to make her own decisions.
If a very specific situation did arise where she was saying she doesn't want treatment X because she can't cope with caring, and you DO want treatment X, I think you can really only push for it if you are prepared to have your DF move into your own house and be his full-time carer yourself.
All the best OP. I'm sure it won't come to any situation like the one you're worrying about.

Sorry you are in this situation.
The medical staff might ask what the family think/want but in my experience thats just to help you feel involved. Any decisions of further treatment will be made on a clinical basis so they might ask what your opinion is, but you or your mum won’t be the decision maker. They won’t stop treatment if they think there is a chance of recovery.

The only thing you need to think about now is being with your father and supporting each other.

I'm sorry to hear that you are in this situation. I would encourage you to really listen to what the doctors tell you and be open to being guided by them. It's really natural for your mum to feel afraid about the future so please don't hold that against her or blame her for any eventual outcome. You are all under the most immense stress.

It sounds like you’re focused on what would happen if he recovers and that’s unlikely so it’s not worth it. After 4 days with your mum you’re obviously feeling the strain.
No-one can expect anyone else to be their carer without them choosing to do so. I would stop talking about all that you’d do for your dad if he survives, as it doesn’t seem you’d take the same approach with your mum.

A day at a time for now. I'm very sorry.

I’m so sorry. How old is your dad? Was he in good health before this?

Start by making it clear that this won't happen

Give your mum a break. Her husband is gravely ill, I doubt much that comes out of her mouth will be sensible.

The relationship between adult child and parent is very different between spouses. They have shared a life together. I think, even if they haven't directly discussed it, your Mum probably has a better idea than you think about what your father would find an acceptable quality of life. He might hate to have her caring for him in that way.

Maybe they have had the conversation about what would happen if.... I've got a signed advance directive for example after strongly disagreeing with doctors about my late mothers choices. You are the problem not your mother.

Does she have sole PoA?

Even if she does, in the UK this merely gives her the right to be informed and express an opinion about treatment. The final decision rests with the medical team.

OP, I'm sorry - it's a horrible situation to be in. But as PP have said the discussion about 'is it worth continuing?' is usually a sign that it isn't. And anyway the decision is out of your hands, so concentrate on what you can do. Be with your dad when you're able, talk to him, hold his hand, say the things you'll regret not saying.