I met my community outreach sister last week to review my situation, and to formally pass my donepezil prescribing to my GP. The outreach team at the Memory Service have responsibility for me for three months after diagnosis, then will visit me every few months or year, depending on the progress of my dementia symptoms.
She’s a lovely woman, with excellent empathy and listening.
But, as I have said before,
I really don’t like the aftermath of these meetings.
Whether with the memory service or a GP
(Note, A GP, not MY GP).
She advised me, as nicely and gently as humanly possible,
And for all the right reasons from her point of view,
To be careful of doing too much,
To do less,
To avoid tiring myself.
And I said
When I get tired I stop, miss a day, whatever,
The beauty of doing unpaid work.
But it has made me question what I do with my days.
Even, oh dear, what I am doing with my life now.
Should I be working through that bucket list?
Should I be putting my feet up, reading, listening to music?
Going out once a week to some activity?
A phrase I use more and more,
I want to be busy.
I want to work.
I want to do worthwhile things that change the world
A little bit
And make patient care and experience better for everyone.
That is what makes my life worthwhile at the moment.
Sorry. This all sounds a bit saintly and precious.
It’s not really.
I just take the opportunities that come my way,
Make my luck, I suppose.
And that’s what everyone should do.
Live. Do. Be alive.
To hell with dementia.
Yes, it’ll probably get me in the end.
But not until I’ve done stuff.
And I could just as well have a stroke or heart attack any day.
If I do so much that I get tired what does it matter?
Who does it affect?
Me, and my wife.
Possibly my ducks if I forget to feed them one morning. Oops.
We must get over this don’t do too much guidance from our experts.
People with dementia, or anything else, know just what they can and want to do.
Social engagement and activity
These are essential to wellbeing.
I am not the first person to say these things.
I learn from others, and add my take.
I want to take risks.
I don’t want a safe life.
I want days that are interesting, entertaining, active,
Laughter and intellect,
Light and serious,
Days that lead to satisfied sleep and waking up to another fresh day.
So don’t tell me to slow down.
Let me manage my life and my health.
I’ll ask you when I need help.
Just be there for me, waiting.