Dementia: What Could You Fix?

What could you fix?
News and Comment from Roy Lilley

 

Before Xmas I linked to this story about NHS car-parking charges.  Out of the blue I got an email and had a follow-up conversation with a charming lady.  Here’s the story.
No one will ever know how I felt that night… walking out of the ward… along the soulless corridors, across the concourse into the car park.  I found the parking ticket in the bottom of my bag.  It was creased up, I smoothed it against the face of the box and fed it into the slot…
Ninety eight pounds….
John had taken a long time to die…
‘Dementia.  He died just before his seventy seventh birthday.  Two days before Christmas.  I’d been with him for five days.
Watching, as every component that made him the dad, the husband, the runner, the graduate, the scientist, the inquisitor, the friend, the lover, the lifelong companion… closed down.
Inch by inch, sense by sense, slipped from his grasp.  He forgot how to speak, forgot how to eat, he forgot how to see, he forgot how to drink, he forgot how to live.  He forgot how it all worked and surrendered into the arms of Morpheus. 
I panicked.  Where would I find 98 pound coins?   I pressed the help button on the machine.  A recorded voice said; ‘Out of hours I should call…’ a mobile.  I had no way of remembering the number or writing it down.  My phone was out of battery…
What would John have done….
I walked around the dark, empty car park.  Tears running down my face.  I found the last remnants of a tissue in my pocket.  I didn’t think I could cry anymore.  
 
Neon lights flickering, pools of darkness.  Back on the ground floor I found a machine that took credit cards; drove home.  Parked on the drive. I sat for a while and eventually put the key in the door.  I was on my own now.  I burst into tears, again…
Holiday photographs, clothes, magazines, books.  A time capsule of a life together.
‘I had to go back to the hospital the next day.  The car park, again.  
I went to the ward.  The shifts had changed and they didn’t know who I was.  They sent me to an office.  It was just after one o’clock.  Lunchtime.  I had to wait for an hour until it opened.
They weren’t ready for me. There were phone calls, patronising looks and a woman who apologised for calling him James.  Apparently, I should have telephoned.’
This story gave me an intimate insight.  
However good the the care, whatever they did… if you think the NHS is all about doctors and nurses; it’s not.  Everyone plays a part.
Which bit of this could you fix?
How about that there is no treatment for vascular dementia and it is likely to be mistakenly looked at from a Mental Health perspective.  All I can ever do Roy is keep banging the drum based on our experiences on this unforgiving journey!
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About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
This entry was posted in General, Mixed Dementia, Uncategorized and tagged , . Bookmark the permalink.

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