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.

Both my parents died of cancer in hospital. My mum in 1996 and my dad in 2019 so thankfully pre Covid. With both it was really quite scary and we definitely needed the support of the hospital. Your dad didn't send your mum off to die alone. He sent her to the right place to go in the circumstances. I can't begin to tell you how good the hospital were with pain control for my dad and whilst they were getting on top of it it was very scary and the pain killers and care he received could not have been achieved at home. In those circumstances people do usually go to hospital. I know people who have had parents die at home but they need an awful lot of support from family. Your dad has not let you down as couldn't see how it would turn out. I'm sure with hindsight he would have done it differently but I'm sure he did his best at the time. The fault with relatives dying alone in hospital really doesn't lie with your dad.

I’m sorry for your loss, and absolutely see why you feel this way.

This said the last weeks and days of life are often messy and painful. It probably would have been beyond your family’s abilities to provide all the care she needed in those last weeks if community care was not available. For example administering pain relief and cleaning her. While she didn’t have her family around which is no doubt very painful you know she would have been as physically comfortable as in as little pain as possible. My mum died a week before lockdown and I can’t imagine what we would have done if she had lived two weeks longer.

I would seek some therapy for what you’ve been though. Please try not to be hard on your dad, unless you have lived though caring for someone at end of life you can’t possibly know how difficult it is.

he didn't want her to die
So he did what he could in his circumstances, to try to keep her alive. No-one can do more.

You are angry that you've lost your mother. Anger is common after bereavements. It will pass. Get some bereavement counselling. Anger with the hospital is common too, and often (in my opinion!) fully justified. But I think 'Covid' will give them blanket protection against any complaints.

I’m sorry for your loss.
I looked after a dying relative during lock down, they wanted to die at home. I am fit and healthy but struggled to care for them at home, the hospice had closed- it was really difficult & there was two of us caring for them 24/7

would your father been in a position to care, lift, wash etc and do everything for your mother solo?

it really does depend on circumstances as to whether you can be at home, it’s incredibly difficult 😥

It’s maybe worth trying to re-frame what the document is in your mind a little.

Its an “in an ideal world this is what I’d like” thing. To die peacefully at home with family, if possibly.

Sadly that’s sometimes just not possible. It’s what my FIL wanted as well, but his pain and care simply couldn’t be managed between us all in the last few days and he ended up in hospital. It took mil a long time to forgive herself.

Add in the hideous complications of lockdown and life was horrible at that point. And the way people were treated in hospital with no visitors makes it worse, but it wasn’t that families didn’t care about wishes. It was just circumstances at the time that took over.

I don't blame my dad or anything.
I just can't believe she thought she'd be at hoem and when she couldn't speak she was taken away amd not allowed to see or speak to us. she couldn't hold a phone to her head. I miss her and I didn't want her to die at home. I couldn't look after her, life got in the way (ha ha)

I don't blame my dad. I don't even blame cancer. it's just shit isn't it?

How is that helpful?
she went to hospital because she needed medical care (or her husband believed she did) why would the OP have had her at her house rather than her go to hospital or stay at home?

I can see why you are angry. But -
We recently kept my dad at home for end of life care. It was not easy, despite him having no pain. It took 24 hour nursing (he had amazing live in carers) and, although I'm glad we did it, it was hard to watch and required constant problem solving as he became incontinent, completly bedbound, started developing bed sores, lost the power of speech etc The thought of doing that alone, during the first lockdown, I can't even imagine how awful it would have been.

If your dad loved your mum then I think you have to accept that he acted in what he believed were her best interests- and maybe be grateful that he bears the weight of that decision not you.

I've seen a few deaths over the years and the only ones I'd consider "good" were over very quickly. None of the ones where people lingered had much to recommend them be they at home, hospital or hospice. Dying seems to take a lot of energy, I'm honestly not even sure family are much comfort in the end, I've sometimes felt we were more like a distraction from the business at hand - wanting something more from someone who has no more to give.

Whatever the answer I hope you find peace

When my mum was dying a decade ago I was self employed and running a fledgeling business and had to split my time running between my work on the mainland and my mum in northern Ireland, driving all night, compressing hours, at my limit financially and 30 yrs old.

A decade on I'm employed with a good salary and good leave and I think REGULARLY how unfair it is that I would have been able to not only take the time to care for her as she passed but also the fun we'd have had and the comfort we could have offered her if she was still here. It's so unfair, my siblings and I regularly discuss it.

Are you an only child? Going through it together is the only thing that kept us all going at the time. I hope you have someone similar to lean on.
.the dad thing, mines a useless sack of shite and always was so no experience of good dad's here but if yours was a good one, just trying to survive mentally and physically in lockdown I'd try to work together to forgive him. I wish my dad was salvageable as a relationship.

Yanbu to be angry and sad and still grieving the fact your mum's final days were made more horrific by COVID lockdown. It was an unnatural time. X

I’m so sorry for your loss.

It’s awful losing a loved one. You are still in the grieving process, which is perfectly normal. You are trying to find answers that are not there. You need to blame someone and your dad is the closest thing. It’s not his fault.

Caring for someone 24/7 is bloody hard and even harder when you know the inevitable outcome.

As PP have said, hospices closed during covid and our carers even stopped coming in, so there was no respite at all and no one could say how long that would last.

It’s understandable that you’re angry, but you need bereavement therapy or at least talk this through with more people that understand.

Be kind to yourself, you’ve been robbed of saying goodbye to your mum.

I am so sorry for your loss and the terrible circumstances.
You acknowledge your dad didn't really understand and thought she'd get better. Try to hold on to the fact he was doing what he believed was the very best thing for her.
As others have said without a care plan in place it would not have necessarily been the right place for your mum to die at home.
And when people are very very I'll at the end of their life it is unlikely they know much of what is going on and so your mum would not have necessarily realised she was on her own.
Try to remember all the times you were there. And try not to blame your dad or any of the healthcare professionals who were all trying to do their best for your mum.

As an ex district nurse who has cared for dying people at home I would never ever 'choose' to die at home nor expect my family to cope with all that entails. The disjointed services, staff shortages workload and general lack of provision mean it's very rarely as you see in the movies.
I'm sorry for your loss OP.

I think aswell, when we spoke about not going I hospital again, dnr and death, it was comforting to know we'd be together. but I didn't even get to say goodbye. and I was waiting for her to come home like everyone was and she never did.

but we had 15 years to say goodbye actually so I guess I had that. and as I said earlier I thought my eldest baby wouldn't remember her but they had 8 years.

my mom wouldn't be in bed moaning to strangers on the Internet that her parents died. she'd be downstairs making breakfast and pacKing a picnic for our Sunday morning walk. that's who she was.

"yes he thought when they rung that it was to pick her up, but they actually called to say she has died.
we had no communication for almost 3 weeks until she'd gone*"
*
Sorry, can't quote or format well on my phone.

I don't understand, she was taken to hosp and you didn't call the hosp? Just waited for them to call you?

I had a family member in hosp during lockdown. We called a lot, and (knowing we couldn't visit) the staff were very kind.
I know many people died alone, but also I know family could go in for end of life patients.

I'm so sorry your mum died in these circumstances

@Zcity because she wasn't in a position to care for herself & the husband didn't feel able (even if he just felt scared of her dying, HE is allowed to say 'no')

@drageon im SO very sorry that your mum died and about how it was, that's traumatic & I think you should try some trauma therapy xx

The form would have meant that they wouldn't have taken her if your Dad felt he could cope. They couldn't leave her to die when he said he wanted them to take her. imagine how you'd feel now if they'd said 'No'??

it was your Dad who went against the document, not them. You live your Dad so it's easier to blame others & have someone to be angry with, but it's not the truth of the situation.

you should have been able to have an end of life visit, so she didn't die alone, but it wasn't always possible with staffing levels & other things.

definitely try some trauma therapy 🤗

It is absolutely appalling that people had to die with no one that loved them with them. It was a beyond cruel situation for everyone . I feel for nurses etc who were the only people to provide the last moments of comfort. The enquiry into covid will hopefully make clear who is responsible for these decisions on wjat basis. But getting back to the signing off the form, it might be your wish. But no one can make someone else look after them if it is beyond their capability or they just can't cope with it.

OP I get why you're angry but lockdown was an unprecedented situation and for your dad, she got poorly very fast, he couldn't guarantee you'd all be able to help and he was very isolated with his beloved wife extremely sick. Can you imagine the trauma to him if she stayed at home, potentially without being able to access appropriate supplies, painkillers and basic care?

I'm POA for both parents, medical and financial. My DDad has said he never wants to go into a home and will bring about his own death in the event of a terminal diagnosis. I applaud his honesty but I've told him that if he was in a car accident for example, and couldn't make that choice for himself, I won't be helping him shuffle off his mortal coil. I also explained that if I couldn't physically or mentally cope with his care, he would have to be in a home in those instances, and he understands this. DMum is a lot more 'flexible' and wants to go into a home rather than be at home bored and lonely if she becomes infirm.

To me, wishes and signed documents are incredibly important but you cannot plan for every eventuality & lockdown was one such time where plans had to change. I think your anger about the circumstances of your mums death are very justified, but that should be on the hospital, not your dad, family or the paramedics. I'm so sorry for your loss and I hope you can heal in time

I’m so sorry for your loss OP.
Your poor dad must’ve struggled so much, seeing his wife in pain with virtually no help from family.

I understand your guilt and sadness about how your mum passed but your dad did his best. He’s here now so try and get rid of the anger and build your relationship with him well. He won’t be around forcer and you can’t change what happened.

@drageon

sorry, I meant to say more clearly. The point of signing the form is so that your DH could say 'here is the form, it was her wish not to go back into hospital. I can or can't care for her so please leave her/take her'.

but they're not going to leave you to die if your DH says he can't/won't look after you.

my mom wouldn't be in bed moaning to strangers on the Internet that her parents died. she'd be downstairs making breakfast and pacKing a picnic for our Sunday morning walk. that's who she was.

It’s totally fine to be moaning to strangers on the internet. You aren’t doing anything wrong. If it helps you to write things down and complain about how shit and unfair it is ( it is shit and unfair, and feels senseless) to strangers online, then that is a good thing.

I bet your kids are breakfasted and are going to have a lovely weekend with you.

I’m so so sorry.

Agree with you.

Dofferent but someone in my family paid in advance for their funeral and chose all the songs etc. They also chose a dodgy executor. The executor changed all of the funeral plans to suit hisnown personal taste and the funeral director just shrugged and did whatever the executor said, the dead person’s clear wishes meant nothing to the funeeal director even though it had all been paid for in advance.

This made me very aware that when you are helpless or dead all that matters is the integrity of the person with power of you, not whatever legal documents you signed in advance.

Ignore most of my post, OP. i thought from your Op that you were angry with your dad but you say you’re not. Apologies

this actually is really upsetting. why go against written wishes?

I am so sorry your dm had to die like that. My dsis is a nurse and was so upset all during Covid seeing people alone at their end. Please know that the staff would have done everything they could to make her comfortable.
There is a huge anger that comes with grief so even if your dm had died at home believe me you would be angry aboutsomething..maybe that she had to suffer with no proper medically trained staff to care for her. Do go for some bereavement counselling as your pain and grief will be heard there.
I do have an issue with people making requests about their end of life care or even their funeral when they are not the ones who will have to do it.
I have told my family do what you have to as regards nursing home etc but dh says absolutely no way. But perhaps l won't be able to care for him so l do think that's unfair.

how does your dad feel about it,
he made a decision
he was worired no doubt.