Home care (not care home) funding for terminally ill person

Tiddlywinks

OneYorkshireLass wrote: »

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?

The consultant will not budge as he says that patients can "plateau" even after a steep decline so he will only go by the book predictions which are taken from stats for all ages as opposed to someone as old and frail as my relative.

OneYorkshireLass

Tiddlywinks wrote: »

The consultant will not budge as he says that patients can "plateau" even after a steep decline so he will only go by the book predictions which are taken from stats for all ages as opposed to someone as old and frail as my relative.

I'd be telling him to get his head out of the textbook and look at the patient. I don't think this is normal to just go by a book and not take into account the physical state of the patient. I don't think it's ethical to be telling the patient that she has 12 weeks, when 'off the record' he thinks it could be less.

whitewing

Could you speak to PALS and see if the prognosis can be reviewed, or explained to more easily meet your relative's needs?

Also try Age UK. I can't link it in.

Jen - hope you enjoy your Xmas Day, and that it gives you a boost.

ebird34

Sorry to hear your news. I would speak to the GP, he should be able to arrange help via district nurses, also try local hospice as they have comminuty nurses that can help also. When my father was diagnosed with terminal cancer, the gp and district nurses were fantastic as well as macmilllan nurses. He decided he wanted to go into the hospice to die but in the interim, theses agencies supported him and helped us as a family too. See what the GP says. Good luck x

bored_at_home

sorry to say when my dad had leukemia he knew when he stopped having transfusions he only had only 2 weeks max left , the best help available (which we were very grateful of) was a district nurse daily visit, mcmillan nurses coming daily for a visit and a marie curie nightnurse for the last two nights. for him to stay at home (which was his wish) any more care had to be covered by ourselves.
i took leave of absence from work and mum and i did it between us but it was emotionally as well as physically tiring.

maidincornwall

Everyone should have the right to die at home if that is what they wish, I had to fight to get my mother released from hospital to die at home even though they said it could be weeks or months (in fact it was 5 days) they just didnt seem to be able to understand that we wanted her home because thats what she wanted, well done for sticking up for your relative and her wishes, cant be of much help I'm afraid but thinking of you MIC

Tiddlywinks

Well, we did manage to get my relative home in the end - but we had to go to her MP to get things moving and he wasn't happy about helping to be honest.

She got a hospital type bed plus pressure mattress on loan and four carers visits per day plus the district nurse visited when necessary.

Sadly she died last week - but at least it was at home.

Please, if anyone else here has to face this situation please, please be firm about your wishes as the "professionals" do not seem to view going home as a sensible thing to do - they steer you towards a hospice or staying put in hospital.

My mother has also been ill and passed away during the new year break - she also came home from hospital but the system was slightly "easier" to navigate as I could move in with her... we did get a care package of three visits a day - some visiting carers were great but some just wanted to get in and out as quickly as possible - even when it was obvious that my mum was in her last hours. The district nurses were great with her pain management.

All in all, a bitter sweet experience but dying at home (if supported) has still got to be better than dying in a sterile environment like a hospital. I guess a hospice would now be my second choice.

OneYorkshireLass

What a horrible few weeks you must've had, Tiddlywinks, I'm sorry.

I'm glad things worked out in the end, and well done for standing your ground.

winterwhite11

OneYorkshireLass wrote: »

What a horrible few weeks you must've had, Tiddlywinks, I'm sorry.

I'm glad things worked out in the end, and well done for standing your ground.

same from me.:)

Tiddlywinks

Thanks for your kind thoughts.

The trouble is that you need to be firm when you are at your most vulnerable - sadly, the two main charities weren't much help either - they take their lead from the GP who co-ordinates the palliative care plan.

The big problem for my mum was that her GP wouldn't put plans in place until she had arrived home - he refused to pre-plan just in case she got an infection or something and then stayed in hospital. It. was a nightmare of red tape at the beginning but once that was sorted then it did get easier.