Unhappy that my mum isn’t allowed to die at home or hospice

2 years ago my mums breast cancer returned and is now in her bones / liver and brain. she went into the hospice to die in Feb and then weirdly did not die as predicted by her consultants. so was asked to move to a nursing home, she surprised everyone by still being with us now in July & until very recently was desperate to be mobile and not forced to stay in bed and wear incontinance pads.

i have tried in vain to get her home, but nhs /Pallative care nurse that never sees her & her New GP, that had never met her all have the same answers, no funding for 121 care, too expensive, too complicated, what about your own life.

i have no work until September. It will be a mirical if she survives that long. What about her wishes, what about human dignity.

She is not allowed to return to the hospice or go home, except for visits! So I’m being her 121 career whilst the NHS pays a nursing home for 24 hr care but they won’t use the same money to get me a live in care package at home. It’s ludicrous.

Last week she has had a 24 hr sleep and is very sleepy and much less cognitive and mobile.

The nursing home after a family meeting, in which concerns regarding her care where made, has given her 1 weeks notice to leave, so she is now an ‘at risk adult, as she is ‘ technically homeless’. As she is not allowed home. You couldn’t make it up.

it seems unless you have £2500 a week to spend on care you can’t die at home. The CHC will allow you to top up nursing home fees but not at home care packages.

I am honestly praying to god everyday, to let my mother die, quickly and painlessly. She has no dignity and no one is listening to her wishes.

  • Thanks for that,

    Not sure if I've given the wrong impression but I'm not at death's door yet. It's been close a couple of times and I often wonder 'if this is the infection that's gonna get me' but I'm actually in remission at present, although constantly 'ill' in some way or another.

    If and when I get to the terminal phase, supposing something sudden doesn't get me like an infection or sepsis or something, then as far as I'm aware, my GP sets things in motion for all the care needs. Not exactly sure as I haven't looked into it yet. I'll ask the question next time I see a medic, if I remember.

    Thanks again folks for your concern, most kind.

     

    Regards

    Taff