I am at a loss as to what to do. I can’t get my mum into a hospice and I don’t know what to do.
My mum has had cancer for several years (breast, initially went to bones and Nov/Dec went extensively all over bones and several liver mets. The bone mets are so severe that the bones are disintegrating and breaking (leg broke).
hospital obviously, as usual, want discharge soon to get mums bed back
So her situation - bed bound (neither leg works, one broken and reinforced with metal but won’t ever heal, the other full of cancer, painful. She’s totally immobile and bed bound - has catheter and poos the bed, requiring 2 hospital staff to clean up. They wash her in bed. They change the sheets by rolligm
wkth her still on the bed. She slips down the bed and has to be repositioned by 2 staff using a special slide sheet. She’s totally bed bound. She’s on lots of medication. Constant morphine from syringe driver. Has not been able to eat/exist without retching and vomiting since Nov/Dec so is on anti sickness meds. Also steroids every day since Dec and a whole load of other meds. Laxative, fortified stuff etc. Also had a bit of blood transfused yesterday. She sleeps most of day and night. she can still eat (the drugs enable this) and aside from small bouts of confusion from calcium levels, she is 100% mentally there. She’s nearly 80.
the palliative care nurse was very cagey but seemed not to want my mum to go to the hospice. Talk of discharging her home (lives alone) seems utterly double think ridiculous. She is getting 24/7 help in hospital from staff and from visitors if she can’t get her hands to the call bell (my sister slept on a chair in hospital last night with her).
why won’t they refer my mum to the hospice? We are happy for her to be in hospital or hospice due to the care needed. It seems abusive to try and put somoen like this to their home, alone, with many (quite unreliable) visits. I think a hospice referral , to go on their waiting list and wait in hospital would be the best thing for her. When the hospice initially took her onto their patient list in December, they told her the hospice was lovely and would she like to die there and she said yes she would. why now are they trying to back out? The nurse is coming again today to see her in hospital. The hospice worker who was our assigned visitor/support and had been helping with meds hasn’t returned my call. Presumably as dm is a hospital inpatient.
The nurse keeps referring to an “alternative place of care” presumably a nursing home, which my mum stated at the outset she didn’t want. And it shouldn’t be necessary because me and my siblings (there’s 5 of us so we have been able to do it) have had a rota of staying with her at home, before this current admission. Even if we carried on, which we are willing to, the level of care required is too severe.
what can I do? Why won’t they help her?