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Home care (not care home) funding for terminally ill person
Tiddlywinks
Posts: 5,777 Forumite
A family member has found out she has terminal cancer and prognosis is approx 12 weeks left. She is now completely bedridden and needs help with all personal care and eating - her consultant says off the record she has a lot less than that given her rapid decline.
She is currently in hospital but would like to go home for christmas and hopefully for her remaining time. She lives alone in a local authority bungalow, has no savings to speak of and is currently receiving DLA for previous health problems.
The team at the hospital say she will only be entitled to a maximum of 4 visits per day with no chance of funding for 24 hour care or even overnight sitting.
She has no geographically close relatives but some could visit from time to time and stay at weekends.
I have tried the MacMillan helpline and they advise that they provide services via the hospital care team or the GP but cannot help with overnight care.
The Marie Curie charity can only help in the last few days.
Does anyone have any experience or funding ideas please?
She is currently in hospital but would like to go home for christmas and hopefully for her remaining time. She lives alone in a local authority bungalow, has no savings to speak of and is currently receiving DLA for previous health problems.
The team at the hospital say she will only be entitled to a maximum of 4 visits per day with no chance of funding for 24 hour care or even overnight sitting.
She has no geographically close relatives but some could visit from time to time and stay at weekends.
I have tried the MacMillan helpline and they advise that they provide services via the hospital care team or the GP but cannot help with overnight care.
The Marie Curie charity can only help in the last few days.
Does anyone have any experience or funding ideas please?
:hello:
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Comments
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You could ask social services for an assessment for direct payments and use these to employ an overnight carer, I'm sure someone with more experience will be along to advise further.0
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Without meaning to sound insensitive, why does she want to go home? Wouldn't she be more comfortable in a hospice, where she can be home-from-home, where family can visit and be supported too, and she still maintains some dignity and privacy. Or is there no option of a hospice?:heartsmil When you find people who not only tolerate your quirks but celebrate them with glad cries of "Me too!" be sure to cherish them. Because these weirdos are your true family.0
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I'm really sorry to hear your news.
A family friend who passed away from leukaemia a few years ago had a nurse who sat with him through the night. This gave the family (who lived in the same house) a break. I think this was a palliative care nurse from the PCT and as far as I remember he only had this for the last few weeks. It might be best to have the GP record a more realistic prognosis.#TeamCarter
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Just to add to what OYL has said the GP can give this assessment without telling your family member.0
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Without meaning to sound insensitive, why does she want to go home? Wouldn't she be more comfortable in a hospice, where she can be home-from-home, where family can visit and be supported too, and she still maintains some dignity and privacy. Or is there no option of a hospice?
Because that is where she wishes to die - I think that is an entirely reasonable request really. She is elderly and her friends are unable to travel any distances but could pop in to have a chat during her good days if she goes home.
I really want help and advice in helping her achieve care at home as opposed to suggestions for alternatives.
Thanks.:hello:0 -
How emotionally close is she to you/others? Perhaps she doesn't want to pass away in hospital? Perhaps she is scared that she may not get treated decently in hospital? If you can find out more 'why' solutions may present themselves.
You could also see if she would maybe like to be geographically closer to family members.
It's a difficult one, because you want to help but not appear heartless.
(Talking of hearts GlasWeJen, how is your new one doing?):heartsmil When you find people who not only tolerate your quirks but celebrate them with glad cries of "Me too!" be sure to cherish them. Because these weirdos are your true family.0 -
OneYorkshireLass wrote: »It might be best to have the GP record a more realistic prognosis.
As she is still in hospital she can only go via the hospital palliative team there and they take their lead from the consultant who will only quote estimates from official sources and will not make any on the record personal estimates. So, she cannot be fast tracked for any additional services and her GP refuses to get involved because she is still in the care of the consultant.
Given that we are so close to christmas (her diagnosis was only confirmed on Weds) we don't have time for lengthy appeals etc.:hello:0 -
How emotionally close is she to you/others? Perhaps she doesn't want to pass away in hospital? Perhaps she is scared that she may not get treated decently in hospital? If you can find out more 'why' solutions may present themselves.
You could also see if she would maybe like to be geographically closer to family members.
It's a difficult one, because you want to help but not appear heartless.
(Talking of hearts GlasWeJen, how is your new one doing?)
Please just accept that she wants to go home and if you have no advice then please just let it be... I don't want to seem harsh but I am desperate for help on the home care issue and not on alternatives.:hello:0 -
Tiddlywinks wrote: »As she is still in hospital she can only go via the hospital palliative team there and they take their lead from the consultant who will only quote estimates from official sources and will not make any on the record personal estimates. So, she cannot be fast tracked for any additional services and her GO refuses to get involved because she is still in the care of the consultant.
Given that we are so close to christmas (her diagnosis was only confirmed on Weds - they previously thought it was a stroke) we don't have time for lengthy appeals etc.
If she wishes to go home - which I completely understand - the social services department based within the hospital should be involved in making this happen. They can be extraordinarily slow so keep pushing for answers and have them work alongside the hospital palliative care team. It's not an unreasonable request for someone with a terminal illness to want to go home, and every effort should be made to get them there swiftly.
You're having problems with overnight care because the prognosis is 12 weeks, rather than, say, a fortnight. Hence my suggestion of giving a more realistic prognosis. Is the consultant aware of your family member's wishes?#TeamCarter
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Tiddlywinks, start with a day pass for Christmas, they can arrange for a carer to help out with nursing needs if you ask the right people. Highlight that it's her last Christmas and that she wants to be around family. Just don't expect it to be quite the same as a "normal" Christmas and bear in mind she will be very tired and sick.
White wing, it seems to be taking ok now. Have had 2 surgeries on top of the actual transplant because of leaks, I'm doing Christmas on a day pass this year
They can't workout if the leaks are immune related (that's basically game over) or my crappy circulation system related (not so bad). Im fairly sure I'm swallowing half the pharmacy every morning while they work it out.
The latest lot has played havoc with my sleeping pattern.0
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