Whats the point in signing this if my husband can say 'no'

[drageon]

My mother died a few years ago. She had cancer for a few years and we knew she was going to die. She also knew.

While she was still able to consent, she signed a form saying she didn't want to go to hospital again and she wanted to die at home. She was taken to hospital during lockdown and never came home. She spent her last few weeks alone without even a single phone call (she couldn't speak at this point or was able to use a mobile phone).

I am so angry that my dad was able to just refute her wishes (although I understand why he did, he was desperate) and her previous wishes were disregarded.
She was definitely "still in there" as we would have family gatherings and she would be silent, then after what I expected was a tremendous effort, she managed to say something about plastic pollution and everyone was surprised.
I love her so much and I can't believe she had to die alone without a single person who knew or loved her.

The ambulance that took her away asked if she had signed the no hospital form and dad said she had, but he wanted her to go anyway so they took her and she never came home. I didn't even get to say goodbye.

Why didn't you step in and look after her for her final weeks if this was so important to her and to you? Many care homes just aren't equipped or have staff qualified to carry out end of life care and if someone has an extremely painful condition (some cancers, for example) they are best off in a hospital or hospice situation. When someone is terminally ill they need advocates there on the ground.

The reality is you can want to die at home but it’s not always feasible. That would be my strong preference but I know 100% my DH would not be up to the task. I honestly believe only one of my kids would be up to it and they would not be able to do it themselves so no way I’d want to throw that burden out there. So, I accept I will likely not get what I’d prefer when my time comes.

Have you ever been responsible for a person actively dying and in the lead up? It’s an incredibly hard task. I have a colleague who is well experienced in managing patients having been an A&E clinician for several years. Her dad wanted to die at home and she wanted to honour that. Took long term leave from work etc but after a few weeks and when starting to get to the pointy end she conceded defeat, couldn’t manage it by herself and that was outside of Covid and with a home hospice service. She didn’t fail, that is reality in many cases, some are doable and some are not, it’s all dependant on so many different variables. How you would expect your father to do this basically alone and with reduced services during Covid is mind boggling and very unfair.

I’m not surprised this is hard for you to manage - that’s not the death you’d wish for anyone. But it is more about lockdown than the choices your Dad made, and while it wasn’t what your mum wanted, she was being well cared for and would have known you all loved her.

Have you thought about some counselling to help you process your grief?

End of life with cancer can be very unpleasant. Your mum probably needed pain relief that wasn't available in a home setting. I'm sorry OP.

OP this is awful and I understand why you are so deeply upset.
Two things: your dad may (perhaps rightly) have felt that your mum wouldn't have got sufficient pain medication at home in lockdown. As awful as you imagine her death alone to have been, it would have been even worse if you knew for a fact she were in terrible terrible agony and none of you were able to help her. I really believe that
Secondly - your mum would not want you to torture yourself (perhaps the part of you that feels you could/should have 'done something', however impossible that was in reality). She really wouldn't. She would want you to let it go and have the consolation of the memory of her, not of her death.

Hugs to you. I have cared for my mum, a much-loved aunt and more recently a friend's mum in their final months and I don't think I'm prepared to do it again for anyone else. It is, as you say, utterly draining and exhausting — and all the time you are dealing with pre-emptive grief. I fully understand and empathise with your feelings about your parents' expectations of you. It's an unfair burden that falls almost all the time on women. Women are expected to cope when men aren't.

As I said in a previous post, when people think about dying at home it's always an image of clean bedding and surrounded by friends and family and the sun shining etc. Which is what many of us would hope for. The reality is more likely to include pain, sickness, feeling utterly lousy, being confused and delusional and the indignity of one's children or spouse having to mop one's squitty bum several times a day.

Time heals — or it has in my case anyway. I hope it does for you too.

Stop being a twat to the OP who is obviously in a lot of pain

My Dad died at home, as he'd wanted.

It was so so so stressful for us, his family that loved him. It was almost impossible to get 24hr care, which we had the means to pay for, but the right kinds of carers were not always available.

Dying people can become involuntarily violent/aggressive. They can fall out of bed and can be difficult to lift. They soil themselves several times a day.

It's very very distressing to deal with these things as a grieving family member who is near mental breakdown through grief and lack of sleep.

It was just awful. I don't think he'd realised how bad it would be. At least at the end he wasn't aware.

But having seen this I will never ever put the burden of care on those who love me.

My parent had no visitors for a month before they died. My other parent was allowed in for ten minutes at the very end but by then they had lost consciousness. My sibling and I weren’t allowed in at all.

I'm so sorry your mum died, and that the manner of her death was not what she wanted, or what you would have wanted for her. It sounds so hard. I can hear how sad you are for your mum as well as for you and your family missing her.

I guess another way of looking at the form your mum signed is that it's actually saying "In an ideal world and if you can manage to get the right physical equipment, qualified medical help and emotional and practical support from the family then I want to die at home". Its not saying "I want to die at home no matter what".

So with that in mind your dad did the best he could at the time. Maybe he thought she would be in hospital for a couple of days and he would have time to get organised at home and she could come home.

But circumstances turned against you all. It sounds like you had a particularly awful time when your mum was in hospital with getting updates and news. Im sorry that happened to you.

Is it possible now things are calmer to visit the ward where she was and talk to one of the nurses who cared for her? I have no idea if that would be possible but it might make you feel calmer if you knew she was looked after by kind people and that someone sat with her when they could and held her hand.

You are not unreasonable to be sad and angry, some things that happened over lockdown were inhumane and barbaric. I’m very sorry your mum was alone.

As much as you want to direct your anger at your dad, I bet he is probably going through blaming himself and the torture that brings too.

It was sad and unfortunate but I bet your mum wouldn’t want any of you to continue carrying guilt and anger with you.

Firstly, I am so very sorry that your mum died and that she was unable to die at home/people could not visit. I suspect, if you could have visited, it would have at least helped.

I would suggest you try to access some bereavement counselling.

With your Dad - please try not to be too hard on him. Care of the dying is exceptionally difficult, especially when you are the main carer. Perhaps he felt it was for the best that she went to hospital? Perhaps he was struggling and frightened? Perhaps he was in denial?

My Nana died of cancer the day the lock down was announced. She was in hospital almost two weeks and I had her brought to her own home 4 days before she died. Me and her partner cared for her, supported by my aunt when she could and a truly amazing district nurse team. Her partner was elderly and in denial so the vast majority fell to me.

I can honestly say that although she was peaceful and pain free, it was absolutely brutal for me both physically and emotionally. I was working up to the Friday, dashing to the hospital after work, juggling calls with nurses and social workers. Then from the Fri until she died on the Mon, I was there pretty much 24 hours a day. The one night I went home, I got called at 2am as her partner was struggling so I just stayed after that.
Thankfully DH held the Fort at home.

She died peacefully but I can hand on heart say, if I could go back, I would have taken the option of her going to a hospice.

YANBU for feeling angry and upset. Lockdown was a very weird time for all. I'm a nurse, and I work on a resp ward (and have done for years). During the lockdowns, there was no visiting allowed (even for dying patients) in our hospital (at least on the adult wards - I can't speak for paeds or maternity). What we did was set up video calls for people to be able to speak to loved ones. And we took it in turns to sit with those who were dying. I'm certain other ward and hospital staff would have done similar. I know it's not the same as having family with you.

Luckily (for me - I know that sounds weird!) both my parents died before the pandemic, both were quick and both died in hospital (the one I work in). I was lucky because visiting was allowed, and I was allowed to assist with their care...and I'm grateful for that. But even now, with visiting being allowed again, we do still sit with patients who are dying if their families aren't there. I don't know if that would give you any comfort.

The stuff we saw during the pandemic has haunted me, and hearing about what some in Government did during lockdowns has made me furious, but I'm sure that the staff on the ward would have ensured that your mum would have been looked after, and had good meds and care to make sure she was as comfortable as possible. PM me if you ever want to just vent about things.

I’m so sorry for your loss.

I do think you are under estimating the experience of end of life care for somebody. My good friend who is an A & E doctor has just lost her father who she nursed for weeks at the end of his life whilst battling lung cancer.. I won’t recount what she has experienced but I can say it’s absolutely traumatised her and it has been very very hard for her to deliver the necessary care despite all her experience. She feels now he would have been far better in hospital despite her very best efforts. I’m sure your Dad was hopeful she would come home. I’m also sure that the fact he didn’t have to endure that experience first hand and neither did you is a blessing. I also expect your mum’s last few days were more comfortable in a medical setting than at home and pain relief will have been much more consistent for her. Best of luck to you and your dad… awful awful timing but honestly I think you could be writing a post from a place of extreme trauma had you been responsible for her care first hand during that time. Lots of love xxxxx

I've not heard of a no hospital form.
My dad was asked where he would prefer to be at the end but there wasn't a form.
I've also been in a care position for loved ones at end of life and it is exhausting . Way too much for one person

Your poor family. So many family members panic when terminal love one takes a turn, they think they are doing the best for the person as they just want more time, want them to get better, can't cope when faced with actually losing them. I'm glad your giving your dad lots of love and understanding

My mum is 92 and lives with us. She has breast cancer and dementia. Her LPA for health states clearly that she doesn’t want to go into any kind of full time care, or hospital at the end of her life. She wants to end her days with us. I fully support this and will do so for as long as I can. But in the real world, I’m fully aware that at some point this may not be possible, and as long as whatever happens is in mums’ best interests as her LPA I will agree to it on her behalf even though I know it’s not what she would have wanted. She also has a DNR on her medical records. Having had it explained to me that in the event of a major heart attack/stroke, which is the way vascular dementia usually goes, she would have little or no quality of life, I’m not about to object to that either. OP, we do the best we can with what we have. You have to remember that the majority of the caring would have fallen to your dad, during lockdown. I suspect he had both their interests in mind, as it would have been incredibly difficult. So sorry you feel this way, and I hope you soon get to a place where you can accept what happened and remember better times with your mum.

I just want to say how sad I feel for you. The trouble is no matter how you revisit what has happened, you cannot change what did happen.
Please, do try & arrange some bereavement counselling so you can talk & talk about your feelings. Sorry I have no answers to your AIBU.

I hope you have a lovely day OP. Your Mum sounds wonderful. What a gift to have had her in your lives.

I’m really sorry about your mum. Sounds like a horrible situation. I do empathise. My mum had a DNR but was taken to hospital several times near the end. The care home staff didn’t want her to suffer, so made the call. I’d have rather they let her go but I don’t blame them. we make the best decision we can at the time. The reality is that any decision in such circumstances will lead to heartbreak.

I'm angry that her wishes were disregarded by the hospital/ ambulance. what's the point in asking or signing anything when my husband can decide for me if I'm not able to? He didn't even lie. He said she'd signed it but he wanted her to go to hospital.

"No hospital/die at home" is a preference, but one that's
based on adequate support in the home. When the person reaches a certain (for whatever reason)degree of need (unable to feed toilet or drink unaided) and is not getting the necessary level of care at home, the ambulance staff
could not just leave her there.

Clearly, for some reason your dad was unwilling or unable to care for her at home himself .Presumably no family member was willing to step up.

Don't blame the ambulance staff, or the hospital. They are not the reason your mother didn't get her wish.

for some reason your dad was unable, or unwilling to care for her at home himself

Well he was clearly unable because he's not a team of carers with nursing experience. Judging by our experiences with my dad you need at least 2 people on hand 24/7, so in reality 3 so one gets a proper break. There is just no way one person can supply adequate care over a period of days/weeks even if there is no pain to contend with.