Can I prevent mum ever being taken to hospital again?

[RDHCarer]

My mum is 92 and has been living with an Alzheimers diagnosis for over 15 years - cared for in her own home by a team of carers I employ. She had a chest infection recently which led to her being taken to hospital. Unfortunately and despite my contact requests she was not hoisted or mobilised at all during her 2 week spell there. I was with her all day every day to ensure she ate and drank and took her medication but I needed the nurses to help me change her and hoist her. Most of the time she was just left in bed on a pad and ignored - sometimes for 12 hours without being changed. She has now lost her core muscle strength and strength in her legs leaving her immobile and bed bound. she was walking with a frame 2 weeks ago! I am atone both really sad and really angry about what has happened and the lack of care for her wellbeing or her dignity.

So my question is this. Can I refuse to allow her to be taken into hospital ever again and insist that she is cared for in the community? I realise that community care has its limitations - is also strapped for resources and cannot turn around test results (blood tests etc) as quickly but at least I can guarantee my mum will be well cared for at home and she can die being cared for rather than being neglected. Can a GP refuse to do this and insist she goes to hospital in the pass the parcel way that seems to happen in Britain today?

 

[Sirena]

My mother is in a care home and the manager believes hospital is not a good place for a person with dementia for all the reasons you have experienced. We have an agreement that my mother will be treated in the CH for infections and other ailments, and will only go to hospital for serious accidents like a fall which require treatment she can't get in the community. So in theory yes it is possible, it may depend on how amenable the GP is. Have a chat to your mother's GP.

 

[RDHCarer]

My mother is in a care home and the manager believes hospital is not a good place for a person with dementia for all the reasons you have experienced. We have an agreement that my mother will be treated in the CH for infections and other ailments, and will only go to hospital for serious accidents like a fall which require treatment she can't get in the community. So in theory yes it is possible, it may depend on how amenable the GP is. Have a chat to your mother's GP.

Thanks Sirena - I have heard Care Homes will do this. I have said this to her GP but she didn't really commit to an answer. So I guess I'm wondering if I have the right to insist. Given my mum's current condition I cannot foresee anything that would absolutely require a hospital visit. Even fractures....what are they going to do? Mum pulled her cast off a fractured arm a few years ago.

 

[Leeds]

My mum is 92 and has been living with an Alzheimers diagnosis for over 15 years - cared for in her own home by a team of carers I employ. She had a chest infection recently which led to her being taken to hospital. Unfortunately and despite my contact requests she was not hoisted or mobilised at all during her 2 week spell there. I was with her all day every day to ensure she ate and drank and took her medication but I needed the nurses to help me change her and hoist her. Most of the time she was just left in bed on a pad and ignored - sometimes for 12 hours without being changed. She has now lost her core muscle strength and strength in her legs leaving her immobile and bed bound. she was walking with a frame 2 weeks ago! I am atone both really sad and really angry about what has happened and the lack of care for her wellbeing or her dignity.

So my question is this. Can I refuse to allow her to be taken into hospital ever again and insist that she is cared for in the community? I realise that community care has its limitations - is also strapped for resources and cannot turn around test results (blood tests etc) as quickly but at least I can guarantee my mum will be well cared for at home and she can die being cared for rather than being neglected. Can a GP refuse to do this and insist she goes to hospital in the pass the parcel way that seems to happen in Britain today?

My dad is in a care home with Advanced vascular dementia. After a recent horrendous experience in A&E, I have agreed with the GP and manager that he is not to go to hospital, the first port of call is the GP or out of hours on call doctor.

 

[RosettaT]

The same happened to my PWD. I was with him for meal times to make sure he eat and drank. Dispite me repeatedly telling the ward he needed help, when I didnt go in for 4 days bccause of a bad cold they had raised a food and water chart because he wasn't taking any thing in!
He was also left in bed most of the time and lost all mobility. They told me he would never walk again because of the deteriation in his condition. Yet here we are 7 months later, walking with a frame thanks to private physio. If there was the ability to give IV antibiotics at home he would have been much better off. 6 of the 7 wards he was on had very little understanding of his needs.

 

[Sirena]

Thanks Sirena - I have heard Care Homes will do this. I have said this to her GP but she didn't really commit to an answer. So I guess I'm wondering if I have the right to insist. Given my mum's current condition I cannot foresee anything that would absolutely require a hospital visit. Even fractures....what are they going to do? Mum pulled her cast off a fractured arm a few years ago.

Well it depends. My mother had a fall in the CH last year and fractured her hip. She said she was in pain and she was unable to get off the floor, clearly they had to investigate what the problem was, so she went for an xray, fracture confirmed, and there was no question of her not having surgery. She was in hospital 12 days an it wasn't the easiest time, but she got through it and recovered her mobility. So there are times when hospital is justified so I don't think you could just say no regardless of the circumstances, but you could aim to set up parameters.

 

[RDHCarer]

The same happened to my PWD. I was with him for meal times to make sure he eat and drank. Dispite me repeatedly telling the ward he needed help, when I didnt go in for 4 days bccause of a bad cold they had raised a food and water chart because he wasn't taking any thing in!
He was also left in bed most of the time and lost all mobility. They told me he would never walk again because of the deteriation in his condition. Yet here we are 7 months later, walking with a frame thanks to private physio. If there was the ability to give IV antibiotics at home he would have been much better off. 6 of the 7 wards he was on had very little understanding of his needs.

 

[RDHCarer]

Thanks Rosetta - the fact they've recovered some mobility gives me hope! I'll look into a private physio - the hospital physio did say they had referred to a "community physio" (I didn't know they existed! Although judging from the fact I've had no response yet I wonder if they do. So private it will have to be....

 

[RDHCarer]

My dad is in a care home with Advanced vascular dementia. After a recent horrendous experience in A&E, I have agreed with the GP and manager that he is not to go to hospital, the first port of call is the GP or out of hours on call doctor.

Yep! That's exactly where I am with it. Thanks!

 

[RDHCarer]

Well it depends. My mother had a fall in the CH last year and fractured her hip. She said she was in pain and she was unable to get off the floor, clearly they had to investigate what the problem was, so she went for an xray, fracture confirmed, and there was no question of her not having surgery. She was in hospital 12 days an it wasn't the easiest time, but she got through it and recovered her mobility. So there are times when hospital is justified so I don't think you could just say no regardless of the circumstances, but you could aim to set up parameters.

Sadly my mum has an aortic valve issue and a DNR note in force so there is little chance of any operation for anything that happens to her now. Too little chance of her coming out from anaesthetic. Hence me thinking its a bit pointless her going in to hospital.

 

[Sirena]

Yes of course, each PWD will have separate circumstances which you have to judge at the time. My mother has a DNaR too.

 

[RosettaT]

Thanks Rosetta - the fact they've recovered some mobility gives me hope! I'll look into a private physio - the hospital physio did say they had referred to a "community physio" (I didn't know they existed! Although judging from the fact I've had no response yet I wonder if they do. So private it will have to be....

Hospital told me OH could have physio at home up to 4 times a week, in reality it took the community team 4 weeks to ring me, they asked questions relative to OH ability and basically said they had others on their books that could more easily help but would ring me back in 2 weeks even tho' there was a waiting list of upto 4 months. That's when i decided to go private and guess what.....I am still waiting for that call 7 months later!

What angered me when he was in hospital is they asked him to sit on the edge of the bed but of course he couldn't, he had been on his back for weeks, so they just walked away saying he couldn't stand, they never even tried to help him or do any sort of assessment.

 

[Beate]

Have you got the health & welfare LPA?