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.

It is shit op. I suppose your dad couldn't manage which is understandable. How this was managed is another thing. It sounds like your mum needed to go into hospital, although if she was fit for discharge then a care plan could have been put in place to enable her to come home. I think it's unforgivable that she went weeks without a phonecall, but that's not your fault or your father's. It's also a position many families were put in. There are many questions about how covid was handled during this time as I think it was an absolute scandal. Despite all this though, I am sure your mum wouldn't want you to beat yourself up about something that was out of your control, or blame your dad for not being able to cope. The system should have supported your mum, and it is that which failed, not you or your family.

Losing a loved one is very hard, especially when you have questions and doubts. But if you can, for your own sake, try and move on from that and try and remember the good times, rather than focusing on what happened at the end, in time you will hopefully start to heal from this.

Op, the love you had/have for your mum shines through your posts. She always had that, and you were loved by her as well.

I think that you should try and focus on the best part of her life and not the last few months. If she didn't want to be a 'burden' to your dad, she probably was actually happier (not the right word at all) in hospital

Are you able to get any therapy or counselling to help you through this? Your anger is wasted as you cannot change the past, or did you want to make a change to the process?

Was she taken for treatment or palliative care? Could they have known she was at end of life?

I couldn't scroll by without saying I am truly very sorry for your loss. Therapy is expensive but please look into nhs services, there's a wait list but if you feel you need it, may be for best
I hate the fact people like your mother had to die without their family beside them. The heroes that are our doctors and nurses went above and beyond in this time and deserved so much more than a weekly clap. A lot held the hands of patients in their last moments because no one else could. I'm not saying this was definitely the case with your mum, just it was for some people.
And while all this was going on the tories held party's disguised as meetings. They make me sick. Mourners stood at grave sides alone, women gave birth alone, no wakes, no visiting the elderly relatives who live alone, no health checks on children who could be living with neglect, no escape for abused women... the list of damage is endless.
But Boris had his cake. Fantastic.

I think I'm mostly angry because as soon as she had died we were asked if we wanted to visit her dead body, but the person inside was left to die alone. If the cocid risk was to her, who cares? Shes already terminal and obviously dying.

I chose not to visit her body, maybe I should have.

alled but the hospital was full and struggling and everyone was calling. We had the ward number but it was always engaged and difficult to get through. someone did answer sometimes but it wasn't daily updates. More like 2x weekly after hours calling.

What she says and what she's writing don't match though.

There is anger there at her father. The title of the thread alone reveals that

OP I'm so sorry for your loss. I'm sitting next to my dying mum in hospital right now and I know how lucky we are to have the chance to be with her. I read your post and thought "should we take her home to die?" but quickly realised how impractical and terrifying that would be. Here in the hospital we have on tap medical knowledge and help, they can give her morphine as needed and, crucially, two people to come in and change her pads/bedding every few hours (she refused a catheter).

I'm desperately sorry you didn't get the chance to be next to your mum when she passed but I can tell you that the staff are amazing here and I've no doubt they were kind and gentle with your mum too. Your mum wouldn't want you to let this cause you so much unhappiness. And I'm sure she wouldn't want you to hold it against your dad. Try and forgive him and find some peace. You can't change what's happened but you can change how you react to it.

What you just said about your mum being downstairs making breakfast and packing a picnic. Hold on to that because that is how you can move forward. Honour her and everything she gave you by living as full and as wonderful a life as you possibly can. That’s her legacy to you x

thanks luggage and others
I do ramble though, i can't blame people for not reading

I'm so sorry for all you loves who have lost loved ones.

I'm sorry for your loss OP .

One thing I don't understand is the 'no hospital forms'.

I've no knowledge of that but I do know about Power of Attorney and end of life wishes.

Did you father and anyone else have power of attorney? This is the ability to make decisions on medical and financial matters when the person has lost capacity. It means that if drs say someone has to stay in hospital, the POA members can overrule it.

My dad died in hospital and it wasn't what we'd wanted (and did have POA.)
The reason was that he became so ill that it would have been very hard for my mother (late 80s) to care for him and who would provide care 24/7?
He was already doubly incontinent and confused.
We were told he wouldn't survive being moved to come home.

Surely the fact you didn't see your mum was due to lockdown? So many families had people die who they couldn't see. It was a tragedy and so hard for everyone.

People do change their minds about hospital. My late MIL had cancer, she was adamant she would die at home, no one would ever be able to get her to hospital. She had a fall and was raging that the ambulance didn't come quickly enough to take her to hospital. She went home eventually and lived for another few years.

She didn't die at home, her choice on the day before she died.

Your mum might have been different but you will never know. I think you are angry that you have lost her, I know that feeling, and your anger is being directed at this. Your poor dad must have been in a terrible state, I'm sure he just wanted to do the best for her.

I do think the hospital were wrong not to allow some sort of communication, I know one of my kids is married to a doctor and they told me they had held many dying people in their arms as they helped them have their final contact with family via zoom during lockdown. I think it has left them with many mental scars which are only becoming apparent now.

I don't think there is anything we can say that will really help you but I hope you are OK and getting some help. Grief is very hard.

If the cocid risk was to her, who cares? Shes already terminal and obviously dying.

At that time the covid risk was to everyone.
Covid positive patients passing it on to others such as visitors.
Covid positive visitors (early covid there was no routine or quick way to test) passing it in to patients (not just the one you were visiting) and staff.

If early covid then it was a strange time with people not really knowing what was happening or what the full risks may or may not be.

It was a horrid time for people in hospital/care and their families.

You were always allowed to provide care and assistance to the vulnerable (at home).

OP, I am sorry for your pain. I can only imagine how awful it must be to think of your mother dying alone in hospital during covid.

In the kindest possible way, you are conflating several issues, contradicting yourself and it seems to me it might be helpful for you to seek bereavement counselling so you can have the time and space to talk this through with someone properly.

Also - I firmly believe that if your mum was as unselfish as you say she was, she wouldn't have wanted your dad to struggle on at home trying to care for her. It is a horrendous burden, both physically and emotionally. It is so hard on the family. And your dad has had to go on after her death, too.

My mum did die at home during lockdown because she was desperate to be at home. If I had known how it was going to be I'd never have agreed to it.
Her pain management was poor, the district nurses, with one exception, were not helpful or imo sufficiently trained for end of life care.
I had to do it mostly on my own as my sister couldn't travel from abroad and there were restrictions on how many people could be in the house anyway.

Thankfully she only lived for 5 days and on 2 nights we had amazing Marie Curie nurses when she was given pain relief when she needed it rather than sit for hours waiting for a district nurse.

I think you need to stop torturing yourself over this, perhaps your dad felt unable to cope with being her main carer and that is understandable. I am a nurse myself and felt quite inadequate at times in the face of my mums suffering. Sometimes with even the best intentions a death may not be what we would have wished for our loved ones.

I don't want to upset you, it was an awful situation and you're angry and need someone to blame. It's not your dad's fault, or the medics had he known what would happen he may have acted differently but there are good deaths and bad deaths and you never know which you'll get.

It would have been incredibly difficult on your dad to manage that alone and she was much more likely to have a bad death at home with your dad with no specialist care or medication. Yes you helped when you could but you wouldn't have been there at 3am when she was screaming in pain in a soiled bed. I'm sorry but that's sometimes the reality. No you weren't with her but she was with people who would have known what to do to help her and that's a blessing in itself sometimes.

I went to stay with a friend in December and January 2021, when we were all in lockdown, to help her look after her dying mother who was deteriorating after a long, slow illness. My friend had been looking after her for months and was in distress. Their GP surgery seemed to be shut most of the time, although fortunately one older GP, who'd come out of retirement to help during Covid, did visit most weeks. The consultant wasn't available. MacMillan services were non-existent. The community nurse was exhausted and rarely available.

When someone says they'd like to die at home they imagine the family helping out, Macmillan support on tap, a friendly GP who'll pop in every day and sunshine, the cat on the bed and gently expiring to a background of their grandchildren's loving chatter.

What they don't imagine is feeling absolutely awful: terrible nausea and vomiting and no doctor or community nurse available to advise or prescribe. They imagine nice sheets and pump pillows and their own comfy mattress, and not the work of changing bedding three times a day and having to replace the mattress because of uncontrollable diarrhoea or rectal bleeding. They picture themselves still being able to use their own loo without too much help, instead of being immobile in bed and needing to wear incontinence pads and having to be cleaned up like a baby by their spouse/ offspring. They assume they will be compos mentis and not suffering confusion or delusions.

Everything that can be incredibly difficult about dying at home was magnified during lockdown. My friend had had some nursing training and knew more than the average person, but even she couldn't cope on her own and after I had to go home her mum had to be admitted to hospital and died pretty much as your mum did, on her own. Which was dreadful and which, like you, haunts her every day. I knew, after my time there, that her mum was already pretty much out of it and not sure who she was or where she was or who her daughter was. But that doesn't help her daughter, who is wracked with guilt.

Instead of focussing on your mum's situation I would ask you to stop and think for a moment about how it might have been for your dad, trying to cope with the situation on his own. I imagine you're also feeling guilty because you weren't there to help when your mum needed you. Lockdown was a terrible time for those dealing with ill-health and death. I can't stop you feeling guilty, but your mum would understand and tell you to let it go — and when you let the guilt go you can let the anger go, too. Good luck with it. A few sessions with a bereavement specialist may help you process this.

I can empathise with this OP. Back in 2019 my MIL died a horrible death in hospital without any palliative care and despite specific instructions in her Power of Attorney and DNAR.

She was forced into hospital by a care home that refused to offer end of life care. The DNAR was in her hospital notes, and just ignored, but they never added the copy PoA that we gave them.

We thought we had all bases covered, but in the end it all counted for nothing.

I’m sorry for your loss, it’s obviously something that you are struggling to come to terms with due to the circumstances and it not being what your mum wanted.

I don’t know if this will offer any comfort but I think in retrospect your mum being in hospital at the end of her life during lockdown would ultimately have been the best place for her. Covid had so many effects on so many different services and I think from what I know was happening at that time in those services that if she had have been at home there is a chance her palliative care needs may have been adversely affected and she may have been at risk of a less comfortable end of life than normally would be afforded if we hadn’t have been going through Covid.

in hospital she would have been comforted by and cared for by a medical team experienced in end of life care and had the right medications at the right time to ease her passing. I absolutely appreciate and understand your feelings of grief about how it wasn’t what she’d previously wanted and I know it must of been terrifying seeing all the news reports about being in hospital at that time but her passing would still have been dignified and pain free with any specialist care she may have needed for her complex health conditions.

for your ongoing support you may find some closure through PALs at her hospital who may be able to talk through the specifics of how your mum would have Been cared for so you can feel some peace that she was looked after.

Id also suggest trying to access some grief counselling if this is something you may feel beneficial

I am very sorry for your loss. My dad was very unexpectedly given a terminal diagnosis during lockdown. My mum decided he was to be cared for at home but was utterly unable to provide that care. I had to leave my own family for 5 months to join their household 250 miles away, live out of a suitcase and provide all his end of life care including personal care and his drugs, with absolutely zero support apart from phone calls with the palliative care team and supplies dropped on the doorstep. It was in many ways a privilege but it has broken me. My dad would never, ever have wanted me to endure what I did. At the very end I didn’t even go to bed for 2 weeks. I’ve been having treatment for PTSD. I didn’t see my husband or daughter that entire time and I had to cancel work contracts. I’m finding it very hard to forgive my mum for making a decision that impacted me to the extent it did. I’m trying to accept it was an awful and terrible time for the world and we were all forced into making quick decisions about what was necessary in the moment.

The point is that you’re stating your wishes at a particular time in a particular set of circumstances. It’s all well and good saying you don’t want to die in hospital - I think most people would say that. But the reality is far far different.
OP, when someone is on end of life care at home, they have support practically 24/7 from nurses etc. However, during the first lockdown this support would not have been available to anyone. So your mum may very well have been in massive pain with no way of your dad getting her help with pain management. If paramedics had been able to give her what she needed at home they would have. They only take people to hospital who need to be there - not at the whim of a relative who asks them.
You need to be positive - your mum would not have died alone, she would have had staff with her all the time and been made as comfortable as possible. Having watched my father, grandmother and grandfather all die, they were all very unaware of their surroundings or who was sat with them for the last couple of days of their lives. You said your mum wasn’t really ‘there’, so she would have been completely unaware of were she was. She wouldn’t have known she was in hospital and that you weren’t with her. Had she been conscious at all, she would have been focusing on her pain rather than who was sat with her.
What you need to do is think about the fact that she would have been pain free in hospital, which I’m sure is what you would have wanted, and also that your dad did not have to stand by helpless and watch her die what may well have been a very painful death had she remained at home.
Your dad is still here. He is grieving, he needs your support.

Kindly- YABU. The burden of care on the main caregiver (your dad) is crippling when people are dying. Added to lack of support (not saying you didn’t all help and do your best but it will still have been hard) and lack of medical input he would have probably been frightened to nurse her in her dying moments.
Try not to place blame on your dad. As mn often says he did what he thought was best at the time given the information he had. He probably feels a lot of guilt, sadness and grief about the situation too- give each other grace.

I’m so sorry for your loss but I’m just heartbroken for you Dad and hope he doesn’t know how you feel.

He cared for her, almost alone, he probably asked for her to be taken to hospital because his absolute base instinct that hospital is where you go to get better took over. And you know what? I don’t think many of us can really say we wouldn’t do the same. When someone you love is dying nearly all reason goes out the window. We look at the cases like Archie Batersbee and say “well clearly he’s already dead” but then if it were your own child, I at least, can’t say for sure that I wouldn’t also completely detach from reason too.

This happened with me. Not during covid though. My dad wanted to come home to die and asked me to arrange it. I told my mum and she panicked about having to look after him so phoned my older sister (who thinks she's the boss). My sister called my and said that in no uncertain terms was dad coming home. He died alone in hospital as no one could get there in time. I was so angry with my mum and sister. My dad specifically asked me to do this for him: he wanted to be at home where he could see his pets. And because my mum couldn't handle it, he died alone in hospital. He in no way deserved that death as he was so loved by so many people. It made me angry for years and my relationship with my mum was never the same. When she died I'm not sure I mourned her properly as I was still affected by her actions. It upsets me every time I think about it. I can feel the anger brewing again now. Sorry for your loss, OP xx

When my step mother was ill, she was also adamant she didn't want to go into hospital or hospice care.

Towards the end, she really did need 24/7 medical care. Regular morphine top ups were needed, this left her in significant pain between when the nurse was able to visit to provide this. There were issues with the auto injector and whatever my dad had on hand and able to give was no longer strong enough.

My dad had to lift her to help her get to the toilet, it was very very hard on him emotionally and physically.

I mean this in the gentlest possible way, and I fully understand why you wanted to respect your mums wishes but if she was in hospital she would have had as much pain relief as she needed.

My dad tried to provide the care she needed and honestly it was awful, he would ring me in tears (I'm not local) as he was trying to get someone out to provide pain relief. He was exhausted from trying to lift her. He asked whether he should call an ambulance as she was in so much pain but he knew they would take her away and he was so desperate to respect her wishes.

She honestly needed to be in hospital and eventually she was taken after Several days that were in reality a lot more traumatic and painful than it needed to be.

I am truly sorry your mum couldn't have everyone around her or be at home as she wished. But doggedly attempting at being at home to the end was not a nice experience for my step mum or dad.

I know it must have been awful not to be there for your mum. But I wanted to tell you my experience from the other side, and it wasn't good.