Get back in your box


I’ve been thinking about other people recently.
About how other people see me now.
How people react to me.
People I know, family, friends, people I work with.

I wonder who they see.
Is it me or is it a person with dementia?
Do they expect me to behave in particular ways, and look for these?
Have they written me off already?

I went public.
I want people to know what it’s like living with dementia.
I want to see changes in our communities.
I want more and better support for people living with dementia.

I am not unique.
I am sure what I feel and think is felt and thought by others.

So having put it out there I am happy for people to know I have dementia.

But I want them to still see me as I am.

Which is pretty much the same as yesterday, last week, last month.

Perhaps not last year.

“See the person, not the dementia”

Don’t assume that every time I forget a word or drop something
I have taken another step into the abyss.

See me how I am now, not how I will be sometime in the future.

Remember what I have now, not what I will probably lose.

I’m still me.
I’m not a guy dying of dementia.

Most people don’t even think I have it!
“Oh I am always forgetting names and losing my keys…
I’m sure you can’t have that…”
(Which actually are unhelpful, when they tell me…
Two of the many things NEVER to say to someone with dementia.)

Just because I have been given a diagnosis I am still the same as ever.
My symptoms have not suddenly worsened dramatically.
I’ve got years of active life yet.
Remember the old advert.
PAL prolongs active life.
Substitute activity, social engagement, exercise…
Writing blogs!

I want people to acknowledge that I have dementia when appropriate, not to pretend it hasn’t happened.
But I don’t want them to change the way they behave with me and talk to me.

Sometimes I do feel as if my life has stopped, because I am now a person with dementia.
And as if that is how I am meant to feel.

But life has not stopped.
It hasn’t and won’t for a long while yet.
It’s good to know the disease, to say hello to it…
But then to put it back in its box
Where it belongs
Not a label on my forehead that no one wants to look at.

I’m still doing lots of stuff out there
In Shropshire, West Midlands, East of England…
And it’s my lifeline.

I’m still the same dad and husband…

I love meeting people I know, and new ones…
They’re all like old friends, close or not.
And it helps me forget that thing sitting in a box and pushing at the lid…

I don’t want people to feel sorry for me, to travel my journey with me…

I want them to see me as I am an
Just get on with what we are doing together.

And for ME

See the person not the dementia

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