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.

MIL wanted to die peacefully at home too, but with cancer, it’s unlikely that you will get the peaceful death you are hoping for.

Ultimately MIL (and likely your mother too) was unable to perform ANY basic task for herself - eating, drinking, getting in & out of bed, going to the toilet, showering.
Every single thing she needed had to be done for her by someone else (plus all the tasks of shopping, cooking, cleaning, laundry) The resources required for this are immense, even more so if being done at home.
The burden on your father would have been immense.
I saw this first hand for my DH, it nearly broke him trying to fulfil his mother’s wishes to die at home.

Try not to be angry at your father, he was likely on his knees by the time your mother was admitted to hospital. Trust that he did his very best, but remember that he was not a trained health care provider.

Try to re-frame it that your mother got the best end-of-life care available at the time.

You also say that your mother always put everyone else first, she sounds like a lovely lady who would not have wanted to burden or break your father 💐

Tell us about your Mum, OP. What was she like? It sounds like she was a lovely Mum.

What could you do today to honour her memory? You say she'd be packing up a picnic for you. Could you do something like that?

I’m so very sorry for your loss, OP. I get it. My mum died in 2020 after years and years of a terminal cancer diagnosis. I relate totally to what you say about thinking she’d never know your babies or your babies would never know her, but getting those year after all. But it’s still not enough. What I know is that we spent years with this knowledge that stopped us from planning more than a couple of months ahead, and we had so many ups and downs, and then the pandemic took not only the last precious year of her life but it robbed us of grieving properly too. It’s been so hard.

You’re not angry about the No Hospital form, you’re suffering from complicated feelings around “failing her” in her final days because the pandemic fucked everything up. If you can go for some counselling I think you’d find it really useful. Our local hospice offers grief counselling (you mentioned she had respite, so I think they’d help you), or Cruse bereavement charity would be a great place to ask.

Do you actually understand how horrific that would have been, not only for your Mum without the right pain management, but for your Dad. That's a major ask of someone!! Not his fault that covid didn't permit visitors. You can't blame your Dad here. My Dad died during covid, didn't want to go to hospital as he feared never coming home. That's exactly what happened. But it would have been barbaric letting him go through that alone without the kinder balance of meds so he wasn't suffering. You have to understand that your Mums wishes might have been x, but that's a total expectation that your Dad is totally fine with that. It's major and traumatic for everyone involved.

@Theeaglesoared she was so patient. like those fake parents on TV, she would always play with the kids and never ever made anyone feel bad. she must have eyerolled at some of my fashion choices or other choices but she never showed it. ever.
I could take a leaf out of her book. thank you for asking. she really is the most wonderful person you could ever know.

I'm definitely packing up a picnic, thank you lovely.
and thanks everyone for chatting with me. and I'm so sorry for everyone's losses

Caring for a dying person alone is hard work. Sometimes partners have to be honest and say they cannot do it, they need professional help.
It’s not ahead possible to set up home caring support as quickly as it is needed, so I guess your dad had to choose the least worst option.

I’m sorry you all had to go through this.

This.
My father wanted to die at home and he got his wish . It was incredibly hard.It was before covid. He had carers every few hours, doctor visits daily, disrict nurse visits every morning, Marie curie nurses at night when available. If they weren't available I stayed overnight with our mum. I had taken early retirement. In the earlier days I sat with him so she could go out for a break. As the Parkinsons moved on we both stayed with him and my brothers came more and more frequently. It was relentless and emotionally and physically exhausting. None of that would have been possible during lockdown. They have a very modern ,spacious house with practical flooring. There was room for a specialist bed and all the other equipment downstairs. There was room for us to be near him at night and for the carers to easily get round the bed.Covid was a different time, a different world. I expect your father was terrified that they would be left to get on with it. If your mother was on morphine thst would have been so difficult to manage. Try not to judge him harshly. You are younger and fitter. It's a whole different thing when you are old and the world has gone a bit mad.

you are allowed to be angry and to miss your mum op

I am so sorry for your loss. I lost my dad to cancer when covid had just kicked in and no one really knew what was what. To make matters worse, I was on the other side of the world. From the moment he was diagnosed, I was adamant I would be with him in his final moments. It hurts so much knowing not only was I not there, but no one was with him. His partner desperately tried to get to the hospital but she was too late. He always said he didn't want to be in hospital or have a funeral or any fuss, so I try and tell myself he got it the way he wanted. He was only in there for around 24 - 48 hours or so before he passed.

My suggestion is you seek counselling to get through this and your anger. It was lockdown, people on their own, you said yourself you helped when you could but the bulk fell on your father who couldn’t cope and didn’t want her to die. maybe he thought hospital was best for her, maybe he hoped she would get better who knows.

I don’t understand why there was no communication with the hospital for three weeks. Even at the height of covid you could get through to them

It must be so painful to think of her alone in hospital like that.

I'm sorry you're going through this OP. As your dad loved your mum, then my guess is that he made the best decision he could at the time. He might have been frightened by the thought of doing the final days by himself, especially in the very isolated context of lockdown. It might have been different outside of lockdown when he would have been able to access more services and also, friends could pop in more readily etc but lockdown was so very hard in lots of different ways, especially for people like your family in such awful circumstances.

Not to make excuses for what's happened but sometimes having an explanation can help you process it. Have you had any counselling for this? Grief has a way of biting you on the bum when you least expect it and it sounds like you're struggling with the very understandable anger that comes with the death of someone you love. I'm just at the tail end of some counselling myself after losing my mum and although it's been painful having to poke at all the sadness, I'm definitely starting to feel a bit lighter.

Unfortunately you can't change what's happened but therapy might help you process and come to some kind of peace about it. You sound like you're a very loving family...even though she couldn't communicate, you can be absolutely sure your mum would have felt and known all that love.

It's understandable you are hurt and angry, it's a horrible situation. However, try not to be angry at your dad. It would have been so so difficult and scary for him

If X wishes for Y to do all their care, Y has to be able to say no to that, if it becomes overwhelming. The forms would have protected your dad if he refused hospital care for your mum, but they can't force him to do the care himself. I'm sure he tried his best but was terrified.

It sounds as if your lovely mum would have wanted you all to come together and look after each other, don't let this tear you apart.

Hi @drageon , I am so sorry for your loss, your mum sounds so lovely. I like the idea of thinking about all the positive things about her life today. Ultimately we are about our lives, not our deaths.

I think you're just angry because of the situation, rather than what happened as such or with individuals. The covid lockdowns were so hard and ill people and their families really had a thoroughly awful time through it. It's fine to be angry about the situation but it will eat away at you if you're not careful. I would consider talking to someone on a more professional basis to talk through your emotions about it all and try and find some peace, allowing you to focus in the good memories if your mum.

Fwiw I lost 3 members of my family during the lockdowns: fil and two grandparents. None had covid and one was a long term illness and he went into hospital right at the start.

I don't understand why no one could visit at all, for end of life, though. Our hospitals did everything they could to let immediate family visit - spouse and adult children that is, though only 1-2 visitors at a time and wearing mask, gloves and aprons. Dh, mil and bil got to see their dad and be with him as he died, taking shifts 2 at a time. That was in the March/April, so very early lockdown. My parents got to do similar in May and then June/July, taking turns with siblings for a final visit and goodbye.
I'm surprised you weren't allowed a final visit for end of life, unless it was not expected at that time.

This is one of the reasons I back the dignity in dying campaign. If we had the right to end our lives if terminally ill more people would be able to die at home with their family around them at a time of their choosing. I can understand your distress at how your mum passed, would using the hurt to try to prevent someone else having to go through this help you along with grief counselling?

No amount of anger will change the situation. My grandfather died in similar circumstances, I agree that it’s awful but I don’t think about how he died, I remember how he lived.

The problem:
Your mum didn't want to go to hospital and signed something that required the consent of her husband to enable.

Your mum may well have changed her mind as the reality dawned. You don't know for sure. The form gives you reason to doubt she did though. The circumstances may have changed because home visits may have been impossible during COVID or your mum may have worried that home visits would endanger her husbands life.

Or your dad, for whatever reason, may have felt that this task was impossible for him to carry out alone without support. Especially under the circumstances.

The medical staff will have realised that there was an issue with their duty of care responsibilities. Your father also had to consent to be willing to care for your mother. His wife couldn't just impose this on him. The medic duty of care is about ensuring she had the care she needed. Where was she going to get that care?

No one is in the right or wrong here. What your mum wanted wasn't possible for whatever reason and a decision was made to provide her care she needed in her last few days. This might not have been her first choice but it was the option that was in her best interests when the time came. You need to stop blaming your Dad and see it in this way.

We provided end of life care for my mother. There were three of us doing it around the clock, even then it was absolutely exhausting, not just physically ( one of us slept on the floor so she was never alone) but emotionally draining . I can’t imagine what it would have been doing this alone during lockdown. We had to constantly fight to get her the drugs she needed and she never got the syringe driver she was promised so we had to orally administer the drugs. Just basically guessing when she needed it and she clearly hated taking it. As horrible as it was I am glad we navigated it all but as I said there were three of us to carry that burden, not one person who was already isolated and probably scared. If I had been alone I may have gone against her wishes because I just think I couldn’t have coped. So sorry for your loss but also think unless you are the main carer you don’t get to make those tough choices. Counselling really helped me.

I think you’re still suffering unresolved grief, I think it’s also called complex grief. All I know is it feels horrible.
Please engage with some counselling to help you resolve your feelings.

I wish people who can’t be bothered to read the thread would at least read the OP’s posts, she’s said she’s not angry at her dad so stop lecturing her.

OP I had counselling a few years after my mum died, it was with a bereavement counsellor at a local hospice. It really helped me and you didn’t have to pay.

My own Mum died at the same time as yours. She also did not want hospital, and we did manage to let her die at home, and I can tell you now, it was horrible.

The nurses would only give morphine if she was in pain at the precise time they visited, so there were days and nights, where she was writing around in pain, and we couldn't help her.

My Dad was also hopeless, and was a hindrance rather than a help. He did so many things wrong.

But she's gone now, it's over. And my Dad is still here and I have forgiven him and life moves on.

You don't really know whether she was conscious, I suspect she would have been dosed up on morphine and asleep, and probably had a calmer death than if she was at home.

There is little to be gained by ruminating over it and being angry. Your Mum wouldn't want that for you.

Your Dad is elderly, I presume, and was probably terrified and thought she would get better care in hospital. Don't waste what time you have left with him being angry at him. He lost his wife, remember, and probably feels awful that he didn't have the strength to care for her, in her final days.

She sounds like the most bloody amazing mum in the world OP, hold on to the positives if you can x

OP I am sorry for your loss. It must be very hard thinking that your mum's final wishes about her care did not happen, and not having been able to see her.

My MIL died of cancer, at home, in July 2021 and her end of life care was incredibly difficult and distressing at times and still very affected by COVID healthcare restrictions. My FIL had died the year before but had he been around there was no way he would have coped. As it was my poor SIL had to manage almost everything because DH and I live too far away to just pop in and help. We did go down when we could and we were managing her personal care, steering her back to bed in the middle of the night when she got up confused, cleaning her up after double incontinence accidents all over bed/floor in the middle of the night, helping her to stand up, sit down, get into bed...I am a health care professional so was not entirely unprepared for the reality but it was so so stressful and draining. The organising of a care package was again down to SIL mostly, there wasn't much actual help from other agencies so again it was very difficult for the family who just wanted MIL to have her final wishes met and have a peaceful death at home. SIL said trying to get someone to come to the house to give MIL some morphine, when she was literally in her final hours, was especially hard. Yes we were all able to see her and spend time with her, and SIL was with her when she died, but the impact of caring for her was huge and if I'd been there 24/7 the stress and worry would have been too much, let alone the physical exertion and the lack of sleep. So I can understand why your dad made the decision that he did. He had to think of the care your mum needed and who was best positioned to give that.

I agree with a previous poster who said that dying at home without a ‘care package’ in place would have been a very difficult death.

My husband had cancer, some are extremely painful. He had one of those. He wanted to die at home, and I agreed with that. He had oral pain meds which were obviously easy to manage, but also we had a district nurse in every day to top up his 2 syringe drivers for stronger pain control, and carers from Age UK extra help team, as he was, by then, unable to weight bear, and help was necessary for personal care. I could also call the night nurse or the on-call doctor if he needed injectables overnight.

We had a hospital bed with an air mattress installed in our living room, and an oxygen concentrator machine to aid his breathing. I usually slept on the sofa next to his bed so I was there if he needed extra meds or anything else, but the machines were noisy, so sleep was sporadic for us both.

There is no way I would have been able to give him ‘a good death’ on my own.

I sometimes think people imagine someone just fading away in an immaculate bed with the family gathered round, but it’s not always like that.

I am glad I was able to follow my husband’s wishes, but I am in good health, strong and resilient, and I was only 65. It’s hard enough to watch the person you love most in the world slowly dying and I physically or emotionally couldn’t have done so without the magnificent help we were afforded.

He died in the wee small hours as people often do, and the relief that he was spared further pain was immense.

Every situation will be different, and during lockdown, your Mum would probably not have had access to such wonderful care as my husband had. Please be assured that your Mum will have had the best care under those difficult circumstances, and although very sad that you couldn’t be with her, would you have wished her to die in pain? In a soiled bed? With your Dad sobbing because he was broken by the burden of care?

Be kind to yourself and let any guilt you have go. Hope that when your time comes, those who love you most will make the right decision for everyone.