What did I learn yesterday?

I had a great day in London, working on the Alzheimer’s Society new vision with 50 like minded people.

I had eggs royale and coffee at St Katharine’s dock, in the sun, beside yachts, served by a lovely helpful young man.

And, as ever, I learned lots, reflected, and altered my thinking.

That’s one of the great pleasures of going to conferences and workshops.

Ideas, challenge, discussion…

“Ideating”…a new word that was born in my world yesterday. (Though I hope it also dies soon.)

Living well with dementia…what’s that all about?

I’ve wondered about this for some time, but I’ve stuck with it.

Living well with dementia is not the right description.

Yes, it is possible to live well, with or without dementia. To carry on living and doing the same things you did before. To go out and meet friends. To be active, walking…

Published today, I wrote this a while ago for The Huffington Post… The copyright terms allow me to publish it in full, which I have done for my very lazy blog today!

I Was Diagnosed With Dementia At 49 And It Was A Gift

There are more than 47 million people diagnosed with dementia and I am one of them. I was diagnosed at age 49, then a mother of two teenage boys.

In 2006, I started to experience symptoms of acquired dyslexia and other concerning cognitive changes, including some long and short term episodic memory loss. Initially it was relatively easy to compensate for the changes. Eventually they started affecting my work, and I would often get lost while driving the car.

I was rather blasé about it, thinking these changes were due to my brain surgery in 2005, and mentioned them in passing at a regular neurologist appointment…

Whilst I have been too unwell to work, study, or do anything much of any real usefulness for the last couple of weeks, various things have been happening behind the scenes, the product of past work. My second volume of poetry arrived, quite unexpectedly, in the mail this last week, and is already available online. The image here is the front cover, and although it is not hard back, like my first self published volume, I’m very happy with it. I’m also happy to say, although restricted to rest for at least another week, I am slowly recovering, but I did want to my news!

Amelia Walker, now a dear friend who I met when we studied poetry together in our BA, who even then was a published poet, and has since gone onto get her PhD in poetry, wrote the most beautiful forward for this volume, which I am…

This video is not only a lovely tribute from a daughter to her father, but it carries an important message. No matter how far along someone is in the disease, they deserve our attention, love, and respect.

Too many people still have this false notion that once a loved one no longer recognizes them, there’s no reason to visit. It pains me that this line of thinking still exists. Even in the latest stages, there are moments of clarity, and we just don’t know when they’ll come, but regardless, every person on the planet needs love, affection, and human interaction. Whether they remember you or not, they need you. Please don’t forget this.

Victoria’s father was diagnosed with young onset Alzheimer’s when she was just 19-years-old. Here is her story.

Hello, happy August 1st! I am having a couple of weeks off work, but I wanted to share this poem with you all. Have a great day x x

“When I wander
don’t tell me to come and sit down.
Wander with me.
It may be because I am hungry, thirsty, need the toilet.
Or maybe I just need to stretch my legs.

When I call for my mother
(even though I’m ninety!)
don’t tell me she has died.
Reassure me, cuddle me, ask me about her.
It may be that I am looking for the security
that my mother once gave me.

When I shout out
please don’t ask me to be quiet…or walk by.
I am trying to tell you something,
but have difficulty in telling you what.
Be patient. Try to find out.
I may be in pain.

When I become agitated or appear angry,
please don’t…