Gail reads a brilliant poem about getting a diagnosis of dementia. It carries an important message about the importance of services being person-centred. “I don’t want to sit and learn the wartime song”

Hi, it’s Gail and this morning I’m going to read you a poem which I wrote just after I received my diagnosis, as the whole diagnosis process really upset me and this is when I started writing poetry, so that I could put down my feelings into a poem and it’s called “The Diagnosis”.

I sit there in the clinic, my name is called aloud,
The Doctor stands in front of you, looking kind of proud.
We follow on behind him, the clunking of our feet
To the private room, there we have to meet.

Now I am filled with sadness, I am mortified,
How I wish I wasn’t here – I’d like to go outside.
He clasps his hands together, he leans back in his chair,
He taps his notes together and flicks aside his hair.

“I’m sorry, Mrs Gregory, we have to tell you this,
We’ve looked at all the tests and eventually come up with this.
Your memory has deteriorated in these categories,
You have Cognitive Impairment, Alzheimer’s Disease.”

Well, we have the diagnosis of Alzheimer’s Disease
And this is truly flooring and now it’s time to leave.
You walk along the corridor, is this the way out?
Feeling so lost, so empty and also full of doubt.

Now I am feeling angry, I want to scream and shout,
I also want to cry, I need to let it out.
I leave with paper leaflets, they’re screwed up in my hand.
“Someone will be in touch.” My husband holds my hand.

I don’t know how I feel, I suppose it’s too soon to tell.
The only thing I do know – I want to scream and yell.
“Why me? At fifty four years old, my life is just beginning,
And now I feel kind of low, is this my final inning?

We move to be beside the sea, to chill out and retire,
Now I feel the life we had has suddenly backfired.
I don’t know what to do or where to actually go,
There are things that I definitely need to know.

No one seems to care, you are left to your own devices,
I look for groups to join, this is a major crisis.
Fifty four years old is not a good age to be
When you have the diagnosis of Alzheimer’s Disease.

I attend a Living Well programme, the people were so nice,
But at fifty four years old, I think the wrong advice.
Sitting in a room with lots of older people,
When I looked around, I did not feel quite equal.

The people were so lovely, please don’t get me wrong,
But I don’t want to sit and learn the wartime song.
This was all so scary, to think what I could be,
I just need to leave now, I need a cup of tea.

So, any Health Care people, if you’re listening to this poem,
Please, please understand you need to keep us going,
Not to talk about the war or ration books galore,
We need to do so much younger groups, so come on, let’s explore!

Thank you. I wrote that poem on the sixteen of May, 2019. I did find younger groups and I am very, very grateful for the groups that I found – Innovations in Dementia and The DEEP. They put me in touch with people that are around my age and we have things in common and we can laugh and we can live.
So don’t give up, keep going, keep looking for those groups. You’ll find the one that’s right for you. I did.
Thank you. Hope you’re all having a lovely day and bye for now.
Bye.