In memory of Jack, Caroline’s much loved dad, who battled coronavirus, and died peacefully April 2020
Memory Loss with Coloured Lights
Those are my dad’s own words
Written recently aged 82.
Diagnosed three years ago with
Mixed dementia with Lewy Bodies.
The mixed dementia is a catch-all term:
Vascular dementia from the stroke damage
With quick and sudden changes.
Alzheimer’s with the slower, gradual changes
And then there are those pesky Lewy Bodies.
Those extra proteins in the brain creating an alternative reality,
Or a parallel universe infiltrating the here and now.
Coloured lights on a plain wall or a caravan park in the treetops
Sometimes he can reason them away and sometimes not.
Sometimes they are menacing and scary and he needs to fight back.
The King of Albania often sits on a throne at the foot of his bed –
Those things we can chuckle about and be amused.
We have a lot of fun me and my dad. Not to be patronised or treated like a child.
We talk about his dementia, about the Lewy Bodies and the current memory loss.
He’s a clever man is my dad, with a tendency to lose nouns alphabetically he says.
Now that my sister and I are not running around taking care of his daily needs
We enjoy going out for breakfast to this or that farm shop, dog walks and picnics in the sun.
His grandchildren are grown up and go out places with him and as a family
We’re making memories to treasure, taking photos, and always talking.
Listening to his stories and patiently waiting as he finds the words he wants to say.
This is our dad and grandad. He has travelled the world and remembers far and distant lands.
Crack open google earth and he’ll pinpoint exact addresses from fifty years ago.
Leave him to find his room in a small corridor of rooms and he struggles.
Sometimes he loses the ‘door-ness’ of a door and how it works.
In that moment it means nothing to him. Yet he can direct me to an obscure address.
I’m the captain of my car, it is my vessel and I’m in charge
Woe betide any back-seat driver who tells me where or when to turn.
Dad and I do lots of driving here and there and he’ll point out obscure directions I never knew
And others I do, and I’ll just accept what he says and say thank you
In a new turn of understanding unbeknown to me.
Dementia memory loss is often described as a bookshelf being rattled
And the books at the top, the most recent memories, being lost first.
Yet we’ve noticed something interesting with our dad, something very curious:
My sister and her family are musicians and he has a special memory for anything music.
He remembers their gigs and diary dates, and anything related but not his own appointments.
When infections hit him the impact is devastating, with many a time seeming like an end.
Total confusion and not even knowing who we are is painful to witness.
Preparing for the worst seems awful to say but we’ve done it over and over.
I am his daughter and also his advocate. I am honoured but also, I didn’t ask for this.
Emergency ambulance calls and running out of work. He needs his family at those times.
Mum died eight years ago, and I’ve lost count of the number of times that detail has escaped him.
Each time I’ve taken a deep breath and gently and slowly plucked the right words
As he has asked where she is. No-one knows how hard that is. He is not stupid: he cannot be pacified.
Likewise, those times when he asks over and over about his diagnosis
And why it has not been explained, but it has. And I repeat and re-explain.
Dad fell in love a couple of years ago, with a lovely lady called Marjorie.
She has dementia too and hers was more advanced. They had a beautiful year of being together
Enabled by her daughter and us two daughters as they lived in sheltered housing then.
Circumstances intervened and each went to different homes that suited their differing needs.
Sadly, society and systems cannot cope with the love and closeness of elderhood.
We’ve had a lifetime with our dad and not seen him laugh and smile as much
As he had in that wonderful year with Marjorie. They still meet but not as much.
Sometimes he wants to give up on life and sometimes he doesn’t.
I haven’t had as much closeness with my dad as I have had since the dementia
We’ve made the time to stop and just be, to explore and to live.
Dad knows all about plants and lots of this and that. Some of it is confused, some crystal clear.
He still wants to work, tells me about recent job interviews down to the finer details.
He is my dad, my old dad, my new-found dad, and he has a great sense of humour.
Given the right environment and understanding he thrives
He takes pride in our achievements and shares his wisdom.
These days I find myself staring at elder people, especially those over eighty.
Walking home with a bag of shopping or cycling or socialising in a café.
Living independently and keeping a mind of their own
I need to see them and remind myself
That dementia is not inevitable.
I am proud of my dad. I am proud of myself and my sister and my family.
We are doing our best. It is not perfect, and the system is far from perfect.
We have fun times and we have some tough times.
It is what is, and it is an adventure.
We live with memory loss with coloured lights.