How long does this hell go on for?

Oh wow that’s a lot. In your shoes I’d be looking at care homes, but depending on which one you choose they are way more likely to treat for EVERYTHING. Antibiotics etc. (I know this is a hotly debated topic btw, I’m not seeking to minimise it).

My Dad died of Alzheimer’s and flu earlier this year. We didn’t have him vaccinated. Pneumonia set in and we opted not to treat with the agreement of the gp. I have 0 regrets.

I went through this with Mum, she was bed bound for 7 months and doubly incontinent, had been in the car home 8 months by the time she fell and broke her back. I blame the care home, she got up out of the same chair she'd previously fallen out of and even walked the same ditection at the same time of evening, how they let it happen a second time who knows.

So bed bound for 7 months before dying of malnutrition from not eating/drinking.

I considered it a relief when she died, like you it was no way for my mum to live. I've never really cried over her since her death because I felt I'd lost her a long time before and had already done my grieving.

I disagree that things were better in the olden days. It's not like all the old people always peacefully "slipped away" with a handy "old man's friend" case of pneumonia at just the right time. Unstable hip fractures are horribly painful. UTIs make people feel like crap and make dementia worse and they don't necessarily progress to a swift end from sepsis (which in itself isn't much fun either). They can teial on and on and on with the bladder lining becoming ever more chronically wrecked.

I do agree with the PP who reckons Shipman has a lot to answer for- I think he has indirectly caused a vast, vast amount of suffering.

I have to say I’m also an intensive care nurse and I would say the same. Obviously if she’s in pain or distressed yes get treatment for symptom control but I certainly wouldn’t be sitting in A&E for hours again to treat an infection and starting antibiotics. Her body and mind is shutting down, treating any illnesses at this point isn’t extending her life it’s extending her death. Focus on keeping her comfortable and let nature take its course.

Are you the poster with the abusive Dad who doesn’t want to pay for any more care but expects you and your sister to do it all?

Very sad for all concerned.
The worst I heard was a case where someone who was very elderly who had severe dementia was resuscitated after a heart attack.
It was to me, cruel. Not a kindness.

Having gone round care homes for my mother, the saddest room was one where those with the severest dementia were literally all wheelchairs together, a tele on but they were all asleep.

I fear that medicine keeps people alive long after nature intends.

I’m 15+ years in and fully relate. Parents with a combination of diseases. It’s awful. Sending hugs.

Thank you, thats a compassionate, realistic and sensible way to sum up what I am thinking and feeling.
Send love to @UnitaBath and all the others on here in the same boat ❤️

My MiL is now in a care home. It's a nice small place where the staff seem to be very good. It's 200 miles away so we follow their FB page.
She's parked in a wheelchair, asleep with her head back and her mouth open in most of the photos while some entertainment or activity is going on.
It's absolutely heartbreaking when we remember how she used to be.
Dementia is horrendous.

Yes, that’s exactly what I mean. Years ago people slipped away with pneumonia or other infections now they are aggressively treated and although a few may recover well the vast majority are left in a worse declining state after every hospital stay. My very elderly relative ended up in a home and we had all the “no excessive treatment, no hospital stays, no resuscitation” forms competed, but in practice what used to happen was they’d have a turn at night when there were no senior staff about, an ambulance would be called. Quickest way for the paramedics to make it someone else’s problem was to whip them off to A and E, and then we’d have a week/10 day hospital stay where they eventually be returned weaker, more immobile, more confused. It’s a horrible merri-go-round!

I think care homes/NHS are so worried they’ll be sued if every treatment isn’t tried we’ve created a horrible culture of keeping suffering people alive just because we can. I think Harold Shipman has a lot to answer for personally - when my parent (cancer) was dying years ago our family GP came out regularly and when they were finding the pain unbearable he asked if they wanted “the good stuff” I remember him saying you realise you might not wake up, and they didn’t. Less than 24hrs and they’d gone. I don’t know what the answer is, but I don’t want to be the one kept going well beyond my sell by date or my kids having to deal with it either.
My Sympathies you are in this situation.

Bless you OP you sound lovely and like you are doing so much for your lovely mum. It’s terrible the condition we make the elderly live in, my mum has asked me to put a pillow over her head if she ever gets in that state! I do hope your mum passes peacefully soon, it’s no life and not good memories for anyone left behind xxx

@UnitaBath , I have walked in your shoes. Dementia is an evil bitch. Towards the end of my mother’s battle with dementia my dad was diagnosed with a brain tumour and they were both in hospital at the same time, different ones for quite a lot of the time one in Surrey and the other London. He was thankfully moved to the same hospital as her and was able to see her before she died. It was horrendous. I’m sorry I can’t offer you any words of hope or comfort, I don’t know how we manage to endure these things but I’m sending you strength. X

This an awful situation that too many of us have found ourselves in. Dont feel guilty and give yourself grace. As hard as it sounds you need to prioritise yourself. Pull back the amount that you do, when your dad sees how much you actually do then he won't be too difficult to convince about a care home. Plus look after yourself and make sure you have alm the support that YOU need.

Sorry if this is a silly question but do you mean to let them die? Would anyone question why you didn’t?
my grandfather went through hell and now it’s the same issues with my dad, my peers are in the same situation, my friends MIL had 24 hours to live 2 weeks ago and is being ‘artificially’ kept alive with steroids. I would feel like it’s cruel to keep them alive and suffering. Not wanting to start a debate on the ethics of everything, my question is more about if you would get in trouble?

Thanks.

I’m so sorry op. It sounds so hard for all of you. 💐

It's all so hideous and awful OP. I am sorry. My mother just turned 80 and fell and broke her arm last month. We had to sit with her from 10pm to 5am at A&E (no complaints btw, the hospital staff did their best). It felt like the beginning of her decline. She's OK, but this is really a taster of what's to come. God knows what horrors nature has in store for us. I am going to have my heart ripped to shreds, I can see it coming.

It makes me furious that we have so little control over our bodies. We can land probes on Mars, and send back live video footage, yet when it comes to healing the human body, frankly, we're useless. We're still in the dark ages. We can't cure a goddam thing. I know SO many people being tortured by some form of mental or physical illness. A 60-year-old neighbour is bed bound with arthritis, poor guy, and nothing can be done. Another neighbour has been diagnosed with MND. Again, nothing can be done. Dementia, cancer, Parkinson's, MS, you name it we can't cure it. We can treat things, but so could a tribal shaman and, tbh, sometimes I'd have more faith in the shaman.

I think there needs to be some big conversations regarding the very elderly dementia ridden people. My mum, when she had capacity, had a DNAR on her files. She had heart problems and thats what took her after 6 months in a care home. When her heart started to fail they still asked us if we wanted an ambulance called. We declined, as per her wishes and she died peacefully hours later.
In contrast, I was watching Inside the Ambulance a while back and paramedics had been called to a frail old man in his 80s with alzeimers. They whipped out their monitors and gave CPR until they reinstated a heartbeat. Then they bundled him into the ambulance and tore off to the local A&E.
I was shouting at the telly. Stop!! Just stop!! Leave the poor old guy alone!!

Is your concern that your mum's life is being extended in a way that she wouldn't want it to be, because her life is such poor quality?

Or is your concern the toll that caring is taking on your DF and you (and your family and your headspace as a daughter not a carer - all perfectly valid)?

Do you or DF have H&W POA?

Residential care will help with the second concern, but the first concern needs a serious discussion with her health and care providers about ensuring her life is not being prolonged and that she will be allowed a natural death. For example has her medication been reviewed and life extending medication stopped? do you have a ReSPECT process in place that says no hospital treatment?

It is quite likely your DM will have another hospital stay before too long. This time do not allow them to discharge her home. Speak to the hospital social worker about discharging her to nursing care.

So sorry, OP, it is very hard to see your own life and potentially retirement plans slipping away.

Can I just say, start looking for care homes now. I also felt like I got PTSD from visiting one - I came away and couldnt face visiting another for some time after!

Give yourself time to visit and research. Look into funding options. Consider a respite stay at first.

My Dads home was amazing. He started with a month respite. He could have stayed on (and probably should have) but he wanted to come back to us - so did. His decline continued and he went back fully 8 months later.

The respite helped us - and them - be sure it was the right place for him.

Sometimes a fast decision is necessary but, if you can take time before a crisis hits, you get more chance to understand the home your loved one is going to.

And imo be careful if you put her in a care home - their job is to care (and do this very well) keeping people alive for much longer than if she remains at home. 💐

100% agree with this. It’s the most hideous disease for the family to have to deal with. Sending you the biggest solidarity hug.

I agree. Elderly frail folk dont seem.to be allowed to pass away peacefully in their own bed anymore. Years ago a fractured hip would be the end. Pneumonia would set in and they would pass on. Now they seem to operate on very elderly people for no good reason, as in a 90+ year old in law who recently fell, broken hip. Operated on and died within the week. Very expensive, pointless and not helpful to anyone