Dad has died

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


Chris I let you down.

( 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 …
in grief.

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.

Sally, please accept my deepest condolences for your family’s loss. I can’t imagine how difficult things must be at the moment.

I am heartened to hear of the overwhelming support you received from the forum.

Wishing you all the best


I just wanted to send you best wishes at what I can only imagine must be a very difficult and emotional time.

It sounds like your Dad (and you!) have really battled through.

The forum has been such a source of support for so many of us - I’m glad people were there for you during your challenges and hope you continue to get support in the coming weeks/ months.

Best wishes.

Sending my condolences to you Sally. Hope you can take a bit of break to come to terms with your loss and be kind to yourself after all your recent care which can all take its toll.

Sally, so sorry for all that you have been going through. Dad is at peace and out of pain now

Loved the story about Matt Hancock tho! You could of course write to him starting Dear Matt. When we met the other day did you realise etc etc
And then give him what for from all of us

Hi Sally,
I’m sorry to hear your sad news, but take comfort that your Dad’s suffering is over.

Be kind to yourself.

In the future, you could always write a letter to Matt Hancock, explaining where you met him and put your rant down on paper.



So sorry for your loss. I am glad he managed to live to such a good age but I know just how heart breaking it is to lose a parent.

I hope the funeral, etc goes well. I found the funeral and wake very comforting when my mother died recently.

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.

" Our Boy ? "

Print off a copy of our Lord Kitch … add a yellow post it note … send by recorded delivery.

Message on post it note ?

" There yer go squire , sort that lot out ! "

Signed by 7.8 million family / kinship carers.

Simple … and straight at the heart … of all that’s wrong in CarerLand.

( Which reminds me , add the CHC element to Lord Kitch … I though he was losing some weight ! )

Good to see you back , Sally … albeit under difficult circumstances.

Hi sally I’m very sorry 2 hear your father has passed away sending love 2 u xx