How long does this hell go on for?

This is one of my worries, at home we can decide when and if to call an ambulance and going by our previous experiences that will now be unlikely. If mum was to go into a care home do they override our wishes and her ReSPECT form?

In January this year we called 111 for some advice as it was a Saturday and she seemed unwell. Instead of advice they sent out an ambulance, the paramedics were lovely and said 111 were useless. They were going to leave mum after doing her obs but then one paramedic noticed mum’s left calf looked a little bit red and he felt it was slightly larger than the other and said he was so sorry to say but he had not choice but to take mum to A&E (this was before we had the ReSPECT re-written).

We arrived in A&E at 3pm on the Saturday and mum didn’t get a bed on a ward until 6pm the Sunday night. We were in a corridor the whole time and the majority of the patients were elderly and many on their own, quite a few appeared to have some form of cognitive decline. It broke my heart to see these frail and scared people all on their own in a loud, bright and busy hospital corridor with hardly anyone checking on them. One lady was from a care home and no one stayed with her. Bloody dreadful and beyond stressful especially as dad picked up norovirus within hours, that added an other whole level of hell.

He is getting better because we’ve put our foot down recently. I’ve had to, I have some health issues and an operation planned in October that will require several weeks recovery. He will have no choice but to get help in or place mum in respite care.

No, despite begging her to do it and explaining the potential problems Mum couldn’t imagine that she could ever need it. I think it’s very hard if you don’t work in the field or similar to imagine not being able to make your own decisions. (Or else she simply didn’t trust us - the slightly concerning other thought). She was very happy to do LPA for finance but not health. She always said that doctors were good at making sure frail people slipped away. She didn’t believe us when we tried to say how things had changed.

I used to think that it would never end. I hoped for it every day. It did of course, eventually. It does sound with the high number of sleeping hours that you could be getting there.

I do think you should look at a care home, for all your sakes. But yes, it may prolong things. I’m glad that others feel the home worked with them. We felt we had to fight like buggery to get them to leave Mum be. The Respect form was only the first step tbh.

From a professional point of view I struggle too. Interesting conversation with a very elderly person in care with dementia today about views on the afterlife. Carers broke in with ‘you mustn’t say that’, ‘dont talk like that’. At any age, but especially at 90 plus, it is more than reasonable to be unafraid of death, happy to talk about it, and ready to see it arrive.

I honestly didn’t know such a thing existed. Can I ask what they charged?

We are on a waiting list for SS to come and do a care needs assessment on mum in the very near future, I know from past visits from them that they won’t be able to comment on any care homes though. I didn’t know private social workers were a thing. I shall go look that up.

Yeah, too much for him. At 85 he’s actually in really good health and had mum not been struck down with this he’d still be on the golf course every week but he is so depressed now that he’s not picked up his clubs for a number of years.

No they don’t.
We all worked together along with my DM’s GP to do what it is in her best interest.

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.

Well actually yes I have!
I had the flu which then became pneumonia. I was only 32! It was a surprise to me that ‘young’ people could get it, particularly as I was super fit at the time, but it did follow an absolutely awful flu. For me it was sharp chest pains on every in breath, huge temperature, hallucinations, couldn’t eat or drink. It took a good 6 mths to feel totally back to normal.
I’d still chose that over a decade of being bed bound/incontinent/demented - no contest!

We had enormous trouble getting end of life drugs administered for my relative. They were prescribed, then sent back to the pharmacy to be destroyed as they’d not been used for two weeks so that was the policy. Then had to get the Dr to prescribe again…
The district nurse would turn up to administer and if they were asleep, they left without giving them. It was a frustrating and infuriating process. The care home manager told me they were reluctant to give them unless absolutely necessary as “they’re very addictive you know” not a huge issue when you’re 98 and 6weeks into the active dying stage imo!
This was a care home we were paying £2.5K week for though, although as lovely as anywhere like that can be, I get the feeling they were loathe to lose a paying customer without a fight!

This is one of my worries, at home we can decide when and if to call an ambulance and going by our previous experiences that will now be unlikely. If mum was to go into a care home do they override our wishes and her ReSPECT form?

Have you ever had pneumonia? I have and as I choked and suffocated it was horrific. Fortunately the hospital was able to cure me. There was no slipping away. It must be a horrible death, I didn't quite get there and I hope it won't be how I leave this world.

My experience with paramedics and duty doctors was very different to yours. My elderly relative recently died, I had LPA and was always phoned when there was a crisis. The home knew I was happy for them to call me at any time, last call was 3 am. Paramedics and duty doctors always went with my decision to leave her where she was and they would check all end of life meds were in place. It went in for two years but no one doing anything extreme to prolong anything.

This is one of my worries, at home we can decide when and if to call an ambulance and going by our previous experiences that will now be unlikely. If mum was to go into a care home do they override our wishes and her ReSPECT form?