A bed that changed everything - a caregiver’s regret

My mother died in the early hours of Wednesday, aged 91 years, 10 months, one week, and four days old. She lived with me, and I spent much of her final weeks growing increasingly concerned about her health following a series of falls.

She was rather frail and struggled to get in and out of bed – hence the falls. She hated hospitals and refused to go there after the first fall. The ambulance service referred her to adult safeguarding, who, following a review, provided her with a hospital bed complete with a remote control that raised and lowered the bed at the touch of a button. This should have made it easier to get in and out of bed. It didn’t work – her arthritis meant that her fingers were not strong enough to press the remote control buttons.

She was upset at losing her king-size bed to such a poor replacement. With a large bed, she could at least position herself comfortably. With the new bed, she always faced the wall – which she hated. I’d help her into bed every night, but somehow, she always ended up in a less-than-comfortable position, and always facing the wall. With ruthless efficiency, I had donated her bed to charity, so reverting back to her old bed was not an option.

She started to dread going to bed. She didn’t like relying on me, but by now, she needed someone to help her back into bed whenever she woke up, which was often. She had heart failure, and her diuretics appeared to kick in whenever she was lying down. We only discovered the benefits of overnight incontinence pants when it was too late.

After the last fall, I was insistent that we go to the hospital, and the ambulance service willingly obliged. At the hospital, they later discovered that she had suffered a hairline fracture of the pelvis. The doctors were also concerned about the bruising caused by the falls. It was while treating her that her heart stopped, and they were unable to revive her.

This leaves me with feelings of guilt. At 91, she was as sharp as she ever was and would have been most upset at being treated like a child. I’ve seen ageism in its full force time and again when dealing with people – her doctor, the ambulance service, safeguarding services. She could answer for herself, but they invariably ignored her, and insisted on talking to me instead.

It’s easy to say that she had a long (mostly) good life (except towards the end). It somehow feels as if this was avoidable – but that’s the thing about care: it’s often just one small misstep, one small oversight, that has a major impact. We think we’re doing enough, but sometimes that’s not enough.

In hindsight, I wish I’d pushed harder to make her more comfortable. I wish I hadn’t been so quick to let go of what she loved just because I thought it was the “right” thing to do. But I know now that nothing is more important than preserving dignity, and that means treating those we care for as partners in their own care – not as people to be managed.

If I could offer one piece of advice to anyone caring for an aging parent or relative, it’s this: Don’t assume that the solutions the system offers will work for them. Advocate for their comfort and well-being above all else. It may mean asking for something unconventional, pushing back on a system that doesn’t seem to have time, or even fighting for what they need and want when everyone else says it’s unnecessary. But our loved ones deserve more than just the minimum – they deserve respect, agency, and the right to live their last days as comfortably and independently as possible.

As for me, I’ll carry the lessons I’ve learned from my mother’s passing with me, and do my best to honor her memory by being a better advocate for others who are in need. I don’t want anyone else to feel the way I do now – as though something could have been different. Because, in the end, that’s all we really have left to hold on to: the knowledge that we did everything we could

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well said. to me the so called experts actually know nothing, apart from what they have read in na book. they have no experience of life and think they can come in and tell people what to do. dont let them, do what you want and what is best for the person concerned. i dont beven let a dr tell me what to do, if i dont want to doit i wont. i have been blacklisted by a couple of hospitals cause i wont do what theysay, i dont bcare, its my life and my body.

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Ahhhh, hindsight is a wonderful thing. As a twice-widowed, full-time carer for my adult daughter, I can only say that we all do what seems best at the time.

No recriminations, we are only human. We do what we can.

Jane xx

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My darling husband was treated horribly in hospital. Had never been in hospital prior to this fast illness, pancreatic cancer took him in less than 8 weeks. He also had his 60th birthday whilst there and was so ill that day. They piled bad news after bad news on him, never once consulted me about whether he was able to hear it all and as a result he suffered huge anxiety about it. I sometimes think that if the patient is terminal, they just don’t care anymore. They did a biopsy on him the week before he passed and it was very painful. The Oncologist told him he couldn’t have anymore chemo and whwn she spoke to me outside the ward in the corridor, she said ‘oh it won’t be a long drawn out process, a few days maybe a week’ describing his eventual passing as a ‘process’. He actually went 3 days afterwards, in a private room. Prior to that he was stuffed in a ward with 5 other people and he was clearly very ill. I hate those people for what they put him through, it eats me up every day. I spoke up as much as I could for him, but nobody was listening. They don’t know the meaning of the word dignity. This hospital is in Ireland by the way, the health care is atrocious there. He never deserved any of it, he was amazing.

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they dont give a monkeys, havent done for decades. the quicker they get rid of them the better. my hospital is near romford and you dont go nthere for a splinter let alone anything else. the only hospital that givesa damn is barts.

i think nthey make sure the patient hears everything, they dont listen to you, they think they kmow everything, all read out of a book

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I agree with lots that is written on here regarding staff in hospitals and care homes.
I feel so sorry that people not only lose their loved ones but have regrets and that should never be the case. Everyone does what they can for their family member or friend.
Although I didn’t have any disagreements as such with my parents and partner’s care within the hospital environment or the care homes I made absolutely sure that whoever was looking after them knew my feelings and that I was ‘watching’ everything that happened around them and I was extremely vocal. In fact I was a complete pain in the backside.
As I worked for 35 years in the NHS I have seen first hand what can and does happen within the service starting at the GP.
Being determined and straight talking is the way to go with doctors and more so with some nurses who can be very blasé re care.
Insist on second opinions with both doctors at the bedside at the same time and if possible the consultant in charge there as well.
When they don’t talk in layman’s terms tell them to so to understand exactly what’s happening and record on your mobile and tell them you are recording.
Always remember that there is PALS and a Chief Executive and a board who work not only for the employees but is a point of contact for relatives when all else looks as though it’s failing.
It’s exhausting and an extremely emotional time but we have to do it for our loved ones and we should not have to but alas it’s the way of our NHS now. Everything can seem like a battle.
I always thought that the old Florence Nightingale wards were the best when nurses were on the ward in full view and who could see in an instance which patient was suffering.
Now it’s four or six bedded wards with the nurses station in a corridor beyond the doors. In my opinion not good enough. Sometimes old ways can be the best way.
Empathy and compassion through the window.
I can only hope my two sons will be strong for me if I can’t be for myself but my daughter in law is like a dog with a bone and will be exactly like me.
I have to say though that we have to be careful not to brand all care as terrible.
There are excellent hospitals out there with exceptional staff who are overwhelmed and understaffed with no beds and who have to juggle every single day to make the hardest decision as to who has a bed that becomes available and who doesn’t.
I know what that’s like as I had to do it and it’s frustrating and upsetting when you have more than twenty people all needing one bed.
Something needs to be done but consecutive governments have not done enough to address the situation..
Anyway I’ve ranted long enough so I’ll sign off.

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@Peg2 People don’t care, they don’t watch their words & actions, that bad behavior is everywhere not only in your country. I am sorry for your loss.

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