So here I am.. I’ve im med and Ahhhed about joining a forum but here I am.
my mum was diagnosed with cancer lung spread to nodes last oct she was given a few months. Then suddenly in nov she had a crisis and at the time we were told by the rapid response and community nurses that she had days. I moved in and did all you do in those situations. Roll on a month and she was still with us improving in fact.
So they provided carers (this is a whole other story) let’s just say it was diabolical and awful care. She steadily improved enough to basically say she didn’t want the carers anymore. She is bedbound mainly can shuffle to the loo and back. That’s it.
I stayed a little while longer but I just couldn’t stay anymore I had to go back home to my disabled child and animals and frankly to regain some sanity as I’d had no support at all during this time.
I continued to visit twice a week and she regained abilities to basically care for herself. And it remained this way until about three weeks ago. She declined again but this time there was no rapid care no nurse support nothing. I called the hospice and they said call the GP I called the GP and they said call adult social care. I called ASC an they said call nurses. Nurse said no we only do medical.
So one morning last week she had a little fall and called the nurses herself. The nurse helped her back to bed and said “well you’ll have to get a micro provider” told her to Google it. And left.
i can’t mentally cope with moving back there to do it all alone again I just can’t. Where do I turn? I’ve found some micro providers in the hope we can afford an hour a day or so. Why won’t any of the services provide what they say they will? The hospice said they won’t get involved until she is dying.. she IS dying!!! the fluid build up in legs/stomach ect point to last weeks.
im just so let down unsupported as is she.
mots worth stating that she refuses any treatments apart from pain relief ( and even this has been horrendous to get on time and have enough of)
sorry it’s long. Sorry if it breaks rules.
Hi Smallworld
that sounds terrible and being given passed from one thing to another like that is totally unhelpful to either you or your mum.
She is totally entitled to a needs assessment from her local council and if you want to act as carer then you are entitled to a needs assessment see here.
The attitude by the hospice I find difficult to understand as most reports show them as being very supportive.
If it helps you remember you are free to ring the helpline here - it is open 8am to 8pm and a free phone call, they are likely to have information relevant to where you are in the country too since I am afraid to say there is a bit of a postcode lottery at play.
I hope both you and your mother get the help you need especially given you note having a disabled child too - our son has autism so car relate to the struggle that can be.
<<hugs>>
Steve
