Two news stories collided in my in box yesterday.
Plenty has been written about living well with dementia. From the witness of my own eyes, dying with it can be horrifying.
I watched a family stand helpless as their dear mother was hollowed out by this wicked disease. They could only watch, horrified, as one after another, vital senses evaporated and crucial organs forgot how to do their job.
Hands are wrung, collecting boxes rattled, families torn apart, care services depleted and finances exhausted.
No one survives dementia. If we are not careful neither will our health and care services.
It is a disease that only research, investment and a bit of luck in a laboratory will overcome. How near we are to that day; who knows?
In the meantime we muddle through. There is no national plan worthy of the title. The support for families is pitiful and make no mistake, it is a disease for a whole family.
Dementia is a national emergency but no one seems gripped with an imperative to treat it with the significance it demands.
Today about 167 people will die with dementia. Tomorrow another 167 families will be filled with grief and relief. The day after another 167 widows and widowers will be left wondering what life will have in store for them, now they are alone.
One hundred and sixty seven people a day. The equivalent of an average Ryan Air fight crashing and killing all on board, today, tomorrow and every day hereafter.
Funerals will come and go. Tears, hugs and kisses. Promises to 'keep in touch' that will never be fulfilled. 'I'll pop-in'. Empty promises. Followed by a life of loneliness. The downhill run...
... then everyone in your life will be paid to be there; the doctor, the nurse, the social worker, the caseworker, the cleaner, the meals-on-wheels, the pharmacist, the OTs, if you're lucky, the hairdresser. A lifetime of independence grinds to a halt.
Last year I wrote about a widower. He told me he still slept on 'his side of the bed'. In his loneliness, reached out to the empty space beside him... to say good night.
"She didn't know who I was. I used to get on the bus everyday and go to the care home. I'd sit with her. Sometimes she'd let me help her with a wash. Sometimes she'd scream blue murder when I touched her.
I never let her see how it upset me but I used come home, shut the door, sit in the chair and cry...
Now she's gone and I'm relived but I'm ashamed to say that. I just wish I'd told her I loved her. She slipped away. One minute there, the next she'd gone. Now I wish I could go too. What's the point... "
So, there you have it. My inbox, my thoughts on a grey morning, on another train, en-route, this time, to Rotherham, Doncaster and South Humber, a mental health and community Trust.
... it's now later in the day and I'm now
on the train home...
What a day! Wall to wall excellence. A cornucopia of Fabulous Stuff, from new Mums to end of life care and everything in between. And, yes dementia services, with a strong emphasis on research.
This complicated Trust, with its labyrinthine services, is like a tube of toothpaste. The red stripe, the pursuit of excellence.
No matter where you squeeze it, a commitment to excellence is what you'll get. Forensic services, home care, the really gritty out-reach services alongside school nurses.
I loved the recruitment bus they take into town to create a pop-up job-shop. The recovery rabbit (!), twiddle locks and bolts (yup), redesigned CAMS services and the way service users are entwined with service delivery as peer workers.
The smoking cessation programme that didn't work but they had the maturity and courage to admit it, pull it and start again.
You'll find #rdashisfab on the Academy Web-site, with 60 more shares to follow.
They do what is difficult, go where it's hardest and work where life is at its darkest.
They shine a light, bring hope and made my day.
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