I just wanted to let you all know my Dad died yesterday. He had Huntington’s Disease, a progressive neurological illness. He was 80, so a massively good innings for this horrible disease, his brother died in their 50s and 60s… I wanted to thank you all for your help and support, as I was at rock bottom when I found the forum through caring for him, and you guided and picked me up to fight another day. The care battle still goes on for my Mum who has Alzheimer’s, so will still be here with you all.
Weirdly Matt Hancock, the Sectretary of State for Health visited the ward Dad was dying on. (Inappropriately in my opinion given 2 out of 5 on the ward were dead by the end of the day). I feel really angry with myself for not having a rant at him about CHC funding, the Green Paper etc. But Dad was in end of life care by then, so feeling a bit fragile and emotional. Chris I let you down. You will, however, be please to know that Richard (89) and who had nearly died the night before DID give him hell about NHS funding! A high spot in a grim situation! xxx
( Not me Sally , I’m merely a messenger … of sorts … a minefield mapper … in a world full of them , designed
especially for family / kinship carers ? )
Our sympathies go out to you and your family.
NO words are adequate at times like these.
Our thoughts are always with our fellow carers in these situations.
In CarerLand , we ARE all one family … including former ones like me … united through caring …
as one in our constant struggle merely to be recognised for what are / do … and in times like these …
Very quiet on the forum over the past few days … I hope others drop in and add their messages of comfort.
In your own time , Sally … stay with us … even without posting ?
Your life will eventually move on … as will our struggle.
For now , time … and thereafter , the way forward … is yours.
If we can help in any way , your have our phone number … and it’s free to call.
Thank you all for your kind words. They really matter and help…
I have decided that I am going to write to Matt Hancock (Health Minister). But what to say? If I had managed to have a word with him I would have said:
CHC is an embarrassing shambles and shamelessly unfair.
What has happened to the Green Paper? We desperately need a system that joins-up health and social care and doesn’t discriminate against those who have “social” needs compared to those with “medical” needs. You may need to make brave decisions to fund this, but the system is crumbling and needs funding desperately
What are you going to do about the army of unpaid family carers who save the NHS billions a year, yet are left to toil on with no remuneration, support, respite or recognition. Often to the detriment of their own health, financial situation and well-being?
My brain isn’t properly functioning at the moment, but in my case these felt like the salient points. Anything else to add?
I know he will probably ignore me. But at least I will have tried.