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.

My experience with many dying people has been that many change their minds about being at home, and that many more families cannot manage with them at home.

We cared for my father at home. It is a massive commitment and extremely challenging. If you dad felt he couldn't, that's ok. If he felt he couldn't accept her death, and was desperate, that's ok. He coped with as much as he felt able. Pray you are never tested in the same way.

it's e actually exactly what she would have chose herself. she wouldn't want to be a burden. that's why I'm angry too though- she always put herself first.

I am now thoroughly confused

I don't know what the answer is for how to ensure people's wishes are not overruled. So sorry you went through this OP. I wish there was a proper system that ensured we have some rights over our own care that couldn't be disregarded.

There's other things that are similar such as the DNR forms. My DP is a firefighter and they have no way of knowing if someone has one in place if they have to attend. They are legally obliged to continue resuscitating until the ambulance get there and take over. Even if there was a signed DNR form clearly in view they have to disregard it (they can't prove it's the correct person etc).
My gran recently died in hospital and my mum was told the DNR hadn't been adhered to. They said it wasn't binding and they could basically do what they wanted (gran was 92, in poor health, no chance of recovery and very much wanted to die). I wasn't aware there was a form you could sign to ask to die at home as she would 100% have wanted this.

Same with my step dad. They resuscitated him and he had the most horrible last year of a life you wouldn't wish on your worst enemy. The pain that man would have gone through doesn't bear thinking about. Despite having dementia and previously signing various forms when he was in good health, they were all disregarded by the hospital as they used to ask him if he still wanted to continue X treatment and he'd say yes. My mum had medical power of attorney plus he had no capacity to answer properly. He didn't understand what was being asked of him and yes was one of the few words he could still say despite not understanding anything that was said to him.

So you do agree that it was unfair on your father for a “no hospital” request when there was no care plan in place, it was lockdown and he would be responsible for extensive end of life care?

to be honest it's not the problem that she went to hospital, it's that she went alone for weeks and without a phone call.
I'd probably be sad but not so desperately angry if we could have visited her.
we have a huge family, she could have had visits all day every day and not been alone but the tories were partying while she died alone. Her and countless others. I'm really really angry about it.

I'm also a hypocrite because I was relieved when she went into the hospital, but also had a singing feeling in my stomach. it felt like a lottery. We could 'win' more time or lose her now to die alone.

Ok so now it’s about lockdown and no visits.

Yes that just have been horrendous and I am sorry you and family endured that

I'm so sorry that you've been through this. All I can say is to keep having conversations throughout life with your husband and children about your wishes. I am very worried about my husband following my wishes as he would definitely have pressure from a large family to be seen to be doing everything possible.

My mum had dementia and we knew she would deteriorate mentally and physically. She was a nurse and had told us her views many years ago when she was fit and well about end of life care and what kind of interventions she wouldn't want and felt were cruel in end of life. We were as confident as we could be about her wishes. Our only wavering was about whether we were taking decisions at the right time. My dad pretty much stepped back and said you children know what she wanted so you make the decisions and sign the necessary forms.

We were lucky in that we had LPA for welfare and when mum started to deteriorate a social worker sat with us and went through a form that said what interventions we would want and when we wouldn't want her to go to hospital etc. we had the choice every time something happened. In our case my sister was her full time carer and in the last year and a half of her life we had a care package to help change and wash her when she was bed-bound. Mum hadn't been able to communicate with us for years before her death so we were lucky that we knew how she felt about things.

This didn't mean my mother never went to hospital as she did a few times in her last years when she had infections. We talked together and with medical staff each time. One of the times she was in hospital my sister was with her and heard that another patients son had ripped up his mothers wishes. Heartbreaking.

I’m so sorry about your mum. It’s sounds as if you all tried you’re very best for her. It is hard to predict what the end will be like and inevitably some people will have to go into hospital to ensure their pain and caring needs are met. These forms are just a preference but can’t always be adhered to. Try not to blame your dad, he may himself be carrying a huge burden of guilt.

I think the point of the forms is so that the wishes are known and can be factored in. But if the wishes are not feasible for whatever reason, the next of kin has to be able to have a say.

My sibling died during lockdown in summer 2020, in palliative care, in hospital and then in a hospice. A daily visit was always allowed, I know that we, with no medical or caring knowledge, could not have managed with the level of care required at the end.

I think you need to find some bereavement help and please try to be not so hard on your dad, he has had a great loss too.

I mean she would give herself no cake to make sure everyone else had enough, she sacrificed herself every time. But she wanted to die at home and she had to be sacrificed again.

We've just nursed a dying relative in their own home and it really wasn't easy. Even we, as 2 'young' adults forums it tough and we had nurses popping in during the day and if we needed them. It was defo a surreal experience when she started declining and the gp (kindly) stated she said she wanted to be at home so that's what we'll do, when every other time they'd called an ambulance. I found that quite hard to get my head round but they obv knew it was happening. We had no clue. Maybe your dad was the same, maybe he thought there was a chance she'd go to hosp and get better. Our relative had been in hosp a cpl of weeks before they died and had come out 'better'. Tbh your dad may not have been able to cope with the care needed alone anyway. It really was tough for us as 'young' adults and it was relentless and emotional and draining. Of course you also can't sleep as you need to deal with meds and catheters etc. the nurses were so complimentary after she died as I don't think it's a very common thing. Please don't be too harsh on your dad he probably thought she would come out fixed.

Why are you intent on confronting the OP? A touch more empathy wouldn't go amiss.

To me, it's clear the OP also feels for her father and isn't angry at him, as such. Everyone was doing their best.
Emotions can be incredibly complicated, especially with grief.

It's possible to feel angry, but understand why it happened. It's possible to feel devastated that her mum died alone, in hospital, but also sympathy for her dad at the time, but still upset that her mum didn't get her wishes.

It's not black and white, and knowing the harsh reality of the situation doesn't lessen the pain.

The way we treated hospital patients, especially the terminally ill, and their relatives during Covid was utterly barbaric and inhumane. I'm not surprised you're still heartbroken about it, I'm so sorry for you and your family.

Having said that, I agree that it's not as straightforward as just saying "no hospital". End of life care at home is incredibly tough on whoever is doing the caring, even with full support in place.

I have just posted with my own experiences of lockdown. Perhaps you need to take this up with your PAL team, because my experience of having a dying relative during lockdown was that they were always allowed visits. In fact when it looked like the end was coming, it was unlimited, when my relative rallied it was back to one hour a day. Some patients didn’t get visitors, but the end of life ones definitely did. So this seems to be a failing of your provider as it definitely was not policy.

I'm so sorry that your mum didn't have the death that she wanted, and that you wanted for her. It's completely understandable that you feel angry. It will take time and possibly outside support to process all those feelings. I hope that you are being kind to yourself

Thats awful. I'm so sorry.

OP, I'm unsure where you are in the country - but in the north west and south east, we as a family were allowed to visit dying relatives during covid.

I lost three family members, for each of them we were allowed unlimited visits - I used to stay overnight sleeping in a chair most of the time.

When you say you didn't hear from the hospital for 3 weeks until she'd passed, did you and your dad ring for updates daily?

Itd be worth perhaps talking to someone at PALS about this, as PP have said, because that doesn't seem to be the policy of no visitors at the end of life stage.

You are angry at your Dad for not providing the kind of care that no one else in your family, including yourself, was able to provide.

You are being incredibly unfair to him.

Of course the final decision needs to rest with those doing the caring rather than those receiving the care as they are the only ones who can say whether or not they are capable of providing the necessary care.

oh gosh I'm so sorry.
that's horrible. we all cried when my dad said about her dnr form but yes, the alternative is worse.
why isn't there some sort of wrist band? like q concert wristband?
could you imagine? "sorry I want to die. let me die"

my mother had cancer for years and years. 15 years she was deteriorating. I was horrible and drawn out but the last year was the worst year. It upsetting that people are reduced to their death.
My friend was a mother of 3, loved wife lovely person but the only thing she is now is a car crash victim.
all my mom is now is ''died alone died alone died alone" she's a statistic, a lockdown hospital death. I hear it on the news and have a blip, thinking oh that would be horrendous. But then I remember my mother died alone in lockdown it's unbelievable. I'm probably not over it. can't afford therapy though. Maybe I should have posted in chat or something

I think this is more about lockdown than the fact she went to hospital. I'm sorry that you had that terrible experience of not being able to see your mum.

End of life care often needs health professionals, not family members, to administer it. My dad was dying of heart failure in 2019 and my mum and I didn't feel we could cope ourselves at home (especially with my young DDs around) with administering strong drugs to him and all the care he needed to be comfortable. I was also worried about the stress and toll this was placing on my mum to see him in pain at home, who was then nearly 80 herself, and constantly wondering whether we were doing the right thing. My DH had recently had a health scare and had been quite poorly himself.

My dad was fast tracked into a home, there being no space in the hospice, for what turned out to be the last ten days of his life. We visited every day however he died early one morning when we were not there. He got really good care there and had as comfortable and peaceful a death as possible. It can be very difficult to know when someone will die when they have been very ill for a long time. I've also heard that some people actually relax and slip away peacefully while family members are not there. I hope this brings you some comfort.

I was pregnant and gave birth during lockdown too and I was worried about not having my dh with me as they said no visitors and women were dying in labour.
But then they changed the rules and he was allowed to come in the end but nobody let us visit the hospital for my mum.
I had to stay in hospital for a couple of days after birth without visitors, and when baby got ill we had to take him in and 'take turns' leaving him on the ward alone while I left and dad came up. It was crazy.

my aunt died in 2022? she wasn't allowed visitors but she could use the phone and was taken home to die. coronavirus was well over by then. I still have to wear a mask at the Dr's.

I don't know where you were but we weren't allowed to see my dying mother at all. not once and she couldn't use the phone so we never spoke to her.
the ward number was mostly engaged and it was difficult to get through. definitely couldn't have daily updates.

all my mom is now is ''died alone died alone died alone" she's a statistic, a lockdown hospital death. I hear it on the news and have a blip, thinking oh that would be horrendous. But then I remember my mother died alone in lockdown it's unbelievable. I'm probably not over it. can't afford therapy though. Maybe I should have posted in chat or something

You can self refer for talking therapy in many areas.

Your mother wasn’t just a statistic - she was all the wonderful things you remember about her. You know this but focusing on being angry (at many things) may currently feel easier than processing your grief.

So sorry for your loss. My friend had lung cancer diagnosed January 2020 and was in hospital by May. It was a total nightmare for her family not knowing what was happening as no visits were allowed and every phone call they were told something different. She came home in September, with carers coming in 4 times a day, but family struggled looking after her, she couldn’t communicate, she wouldn’t eat or take medication, they were completely at a loss what to do for the best. She went to a hospice, which thankfully was the right place for care and attention. Family and even her dog were allowed in 24 hours each day. My own father we had him home for his last 3 months, at first all was good and between my brother and I and carers looked after him. The last week, he took a turn and we took the decision to send him to hospital knowing he wouldn’t come out. But the day before he went into hospital I spent the whole day alone with him and although he hardly spoke, we had a really good day together and one I shall always be thankful for. He absolutely hated us looking after him and often said that he was a burden on us and that it was degrading and at any time if we wanted to, to send him to hospital he was ok with this.

this doss bring me comfort thank you, and I'm very sorry for you x

yes i know what you mean about being difficult to keep when someone will die. I remember being worried that my eldest wouldn't remember my mum. Age 8 when she died, but even he was born we thought she'd have maybe a year left.

Why didn’t you bring her home or to your house so she wasn’t alone? Your father may have felt he couldn’t look after her at home. Did you have that conversation with him, did you offer to step in?