Has anyone got any advice to help with end stage dementia decisions

[Evie5831]

Our mother has end stage dementia and has been in a care home for 15 months. she had a fall 2 weeks ago and, after a half hip replacement, is now ready to return to her care home. When we first took her there we were assured that, although they are categorized as a care home, she would be there for life and they can accommodate end of life care. We were told the only thing would be if she had a stroke and then she would have to be admitted to hospital.
Now she is ready for hospital discharge the care home have suddenly said they will not have her back. We spent 2 hours today in a meeting with them trying to understand their reasoning but kept being told that we should not have been informed originally that she could stay there and her challenging behaviour means she needs more 1:1 care, which they have been giving but cannot now!
This is the only place our mum knows now, she loves the carers and knows the environment. We believe if they send her away it will a death sentence because she will not be able to cope with the change.
We are also very worried about where will take her, although privately funded she can be challenging and we don't know which way to turn. Any advice appreciated.

Does your mum have a social worker? If yes talk to him/her, if not talk to the hospital social worker about an emergency Continuing Healthcare assessment. You will need to be VERY FORCEFUL with them as they hold the purse strings and hate to let go of any money! This assessment will assess whether your mum meets the criteria to move to a funded NH that can deal with her needs. Alternatively you may be able to get an agreement that the care home will take her back if the district nurse visits a few times a day and that other carers can also go in to support her medical and behavioural needs. This could be funded through CHC or self funded.
If the CH refuse to take her back you may be put under pressure to take her home until another" suitable place " can be found. One of the hardest things you may have to do is refuse to do this, while she is in hospital they have a duty to ensure she is placed appropriately for her needs. If you take her home they relinquish that responsibility!
I really hope that you can get some backup in this matter and that your mum can return to the home she is so comfortable in..

 

[Evie5831]

Well, the doctor said today that Dad has been deemed medically fit and now he has returned to his "baseline" he can be discharged. When met with slight incredulity that he could suggest this was his baseline the doctor simply repeated what he had just said. Apparently he will be ready for discharge on Monday but where he goes is another issue. My sister has been trying to contact the home manager with no success yet, the dementia specialist of the umbrella company says we will meet up once he is discharged (erm, where is he going to go if the care manager has not responded)
Today's rant is we have to wait for Monday, when he can be discharged, for someone to be contacted from the home to come out and assess him to see if they can deal with his increased feeding and hydration needs, standard procedure I know but no one can answer the ever important question of what happens if they say they won't have him back. Rant part two is that he still isn't eating and is only taking minimum fluids and saline will be removed now ready for discharge.

Frustrated doesn't cover it tonight!

 

[Red66]

Hi Evie, a similar case I can speak of. My dad was sectioned in November and had his first bout of aspiration pneumonia in March and consequently went to hospital . After he recovered he had nowhere to go. Nursing homes had been out to assess him but refused to take him owing to his previous aggressive nature when he had first been sectioned. He was already bed bound by this point mind you, yet they still refused. The Consultant and social worker told us the hospital couldn't kick him out as they were bound by a duty of care. The SW told me that dad's nursing needs may become prevalent as an oppose to his dementia needs. I wouldn't panic at this stage. Even if his current home refuse him back he will remain in hospital until his social worker and yourselves find him a home that can meet his needs. Dont panic ha that's rich coming from me!! Hope that helps though!
Red

 

[Evie5831]

Hi Evie, a similar case I can speak of. My dad was sectioned in November and had his first bout of aspiration pneumonia in March and consequently went to hospital . After he recovered he had nowhere to go. Nursing homes had been out to assess him but refused to take him owing to his previous aggressive nature when he had first been sectioned. He was already bed bound by this point mind you, yet they still refused. The Consultant and social worker told us the hospital couldn't kick him out as they were bound by a duty of care. The SW told me that dad's nursing needs may become prevalent as an oppose to his dementia needs. I wouldn't panic at this stage. Even if his current home refuse him back he will remain in hospital until his social worker and yourselves find him a home that can meet his needs. Dont panic ha that's rich coming from me!! Hope that helps though!
Red

Hi Red, thanks for this, as much as I hate that you have gone through this and are still going through it it really helps to have someone who knows about the system. I am on a roller coaster of trying to do the best I can for my dad, my mum and my family but don't have the answer to one situation before another rears its head.

 

[deita2]

Thankyou for this thread

Hi Red, thanks for this, as much as I hate that you have gone through this and are still going through it it really helps to have someone who knows about the system. I am on a roller coaster of trying to do the best I can for my dad, my mum and my family but don't have the answer to one situation before another rears its head.

I am too emotional to take part in this thread as I have the same problems with my husband. Just wanted you all to know how helpful this chat has been to me tonight.

 

[Evie5831]

I am too emotional to take part in this thread as I have the same problems with my husband. Just wanted you all to know how helpful this chat has been to me tonight.

We all help each other on this forum, just knowing you are not alone is a comfort. Keep posting whenever you want, things big or small, stopping them whirling around your head gives you a little bit peace.

 

[Red66]

Hi Red, thanks for this, as much as I hate that you have gone through this and are still going through it it really helps to have someone who knows about the system. I am on a roller coaster of trying to do the best I can for my dad, my mum and my family but don't have the answer to one situation before another rears its head.

Let me know what has happens today. Perhaps if you could speak to Pals at the hospital maybe they could reassure you and give you the facts about where you dad stands on staying in the hospital till a suitable home is found.

Red xx

 

[Evie5831]

Let me know what has happens today. Perhaps if you could speak to Pals at the hospital maybe they could reassure you and give you the facts about where you dad stands on staying in the hospital till a suitable home is found.

Red xx

Evening Red,
The care home manager went to assess Dad tonight and has refused to have him back as his needs are just too complex now. She has told the hospital and has said to us they will take it from here. His social worker has also been informed and has also said its down to the hospital now. Hospital hasn't said anything yet. Guess it is standard practice but just new to me.
Care home manager also gently said can we please clear his room by the middle of next week, hell, that hurt!

 

[LadyA]

Oh Evie, it may be standard practice, but I'm sure it must hurt. Your poor dad. I suppose you just have to wait and see what the hospital /social worker decide? Or are you expected to trot off now like a good little girl and look for somewhere that will accept your dad in his current condition?!

 

[Evie5831]

Oh Evie, it may be standard practice, but I'm sure it must hurt. Your poor dad. I suppose you just have to wait and see what the hospital /social worker decide? Or are you expected to trot off now like a good little girl and look for somewhere that will accept your dad in his current condition?!

I really don't know what to expect and what is expected of me now Lady A. As its happened very late on a Friday there will be no one about to discuss it with until Monday so a long weekend of waiting and wondering ahead. Our family have known for a while that Dad needs more care than the care home can offer but it's suddenly come to a head and, so far, the only thing we have been told is goodbye, goodbye from the care home manager and good bye from his social worker oh , and by the way, clear his room asap!

 

[Evie5831]

Oh Evie, it may be standard practice, but I'm sure it must hurt. Your poor dad. I suppose you just have to wait and see what the hospital /social worker decide? Or are you expected to trot off now like a good little girl and look for somewhere that will accept your dad in his current condition?!

I really don't know what to expect and what is expected of me now Lady A. As its happened very late on a Friday there will be no one about to discuss it with until Monday so a long weekend of waiting and wondering ahead. Our family have known for a while that Dad needs more care than the care home can offer but it's suddenly come to a head and, so far, the only thing we have been told is goodbye, goodbye from the care home manager and good bye from his social worker oh , and by the way, clear his room asap!

 

[Red66]

Hi Evie, things are sounding a bit tricky for you guys to say the least. I would ring round nursing homes within your area, take it into your own hands. That's what I had to do, once I found one that we liked, I spoke to the home and they said that it needs to come from the social worker but that may because my dad was sectioned and therefore was entitled to aftercare 117. Not sure how it would work if it wasn't being funded. But at least you would have a head start and you would feel useful. It sounds insensitive to me of the care home manager, but she was certainly thinking with her business head by the sound of it without giving a second thought about your feelings. Given the nature of her job it should be about feelings!! I would also ask the social worker what their role is in all of this and why is it down to the hospital to find a nursing home? Sometimes social worker can give you a list of homes, ours never to be honest, like I said I did it myself in the end. I can rely on myself!!

 

[Evie5831]

Hi Evie, things are sounding a bit tricky for you guys to say the least. I would ring round nursing homes within your area, take it into your own hands. That's what I had to do, once I found one that we liked, I spoke to the home and they said that it needs to come from the social worker but that may because my dad was sectioned and therefore was entitled to aftercare 117. Not sure how it would work if it wasn't being funded. But at least you would have a head start and you would feel useful. It sounds insensitive to me of the care home manager, but she was certainly thinking with her business head by the sound of it without giving a second thought about your feelings. Given the nature of her job it should be about feelings!! I would also ask the social worker what their role is in all of this and why is it down to the hospital to find a nursing home? Sometimes social worker can give you a list of homes, ours never to be honest, like I said I did it myself in the end. I can rely on myself!!

Hi, I had a quick look on the Internet at possible places tonight but tbh got a bit overwhelmed. When we were looking for care homes SW gave us a couple of options that they would consider part funding so I wonder if the same will happen this time. I don't know how the funding will be sorted now as we were going for CHC but IF I have it right the NHS is going to be responsible for at least part of the funding now without going through CHC due to my dad's level of need, I certainly hope so as we don't have mega bucks to pay if they don't.
I know what you mean about relying on yourself, the lack of control has been a major issue for me as I am used to sorting things out myself and am finding if really hard to not be in control let alone having no say in anything.

 

[Red66]

Hi Evie, I can't help on that one, funding isn't something I have experience with. Maybe ask to speak to discharge coordinator on the ward, maybe they could point you in the right direction, if you play ball with them and let them hear want they want to hear, get them on side and say that you don't want to bed block on the ward they may just help and point you in the right direction. Anything is worth a try. Clutching at straws it what keeps you going eh?? Tough times. I too like being in control but this is in the hands of god / fate whoever/whatever. I don't know, all I do know is its rubbish. Sorry, having a moment this morning. X

 

[Evie5831]

Hi Evie, I can't help on that one, funding isn't something I have experience with. Maybe ask to speak to discharge coordinator on the ward, maybe they could point you in the right direction, if you play ball with them and let them hear want they want to hear, get them on side and say that you don't want to bed block on the ward they may just help and point you in the right direction. Anything is worth a try. Clutching at straws it what keeps you going eh?? Tough times. I too like being in control but this is in the hands of god / fate whoever/whatever. I don't know, all I do know is its rubbish. Sorry, having a moment this morning. X

Thanks I will get on the case on Monday.