Recently I was invited to write for a feature with this title. I found the title very difficult, and the poem starts with anger, but it ends somewhere different.
Is it okay to imagine a narrator who is further along in the dementia process than I am? I don't know. I hope the poem says something worth saying, and maybe worth hearing. I read it on 26th November at the Dementia Congress.
1
What are you here for? Have you come to occupy, entertain?
What do you bring with you? What’s your idea of who I am?
Do you want to talk to dementia, or would you like to talk with me?
2
Are you here to mourn who you think I was, to soak me in your loss,
punish me for changing while you stay the same, or try to push me back?
3
Are you here to show me that you care, to take control,
make me do something you want? Are you here to love me
in spite of who you think I am? Don’t you remember me?
Are you holding back your anger and your fear?
You smother me in pity, I can’t breathe.
4
Are you grasping for your version of the past?
Your mouth moves and your voice goes on and on.
Your smile, that’s not a smile that I can feel.
5
Do you want to meet me, as I am?
Do you want to spend time with me?
Look how the light spills into the room.
Look at the grasses and the flowers outside,
don’t they sway and dance in the breeze?
Could you and I dance with them?
I love to dance, in my own way.
Listen to my toes, dancing.
6
Put aside yourself and what you need from me,
just for now. We’re here, you and I.
Take in this room. Take me in.
Maybe I have something to say.
7
I need time to drop through layers of shame
and helplessness, time to find myself with you.
I watch your mouth move, your eyes, wait for you
to stop speaking. I look for the thoughts
I want to share with you.
8
A word comes out - it’s wrong. You frown, sit forward, strain to hear.
I try again, but I see you’ve gone already. You look at your watch.
You look embarrassed.
9
And then I cry, or rage, give up.
I wish you’d go if you can’t truly stay.
This hurts, you talking to me.
10
Let’s start again. Take me in.
Be with me - maybe touch my arm.
Listen, deeper than you’ve ever listened
in your life. Listen to my hand,
restless in my lap. Listen to my eyes, my shoulders.
I’m here.
I may not be who I was or who you want
but I have gifts for you, and things to say.
I’m here, and in this space you’ve made now,
the thoughts begin to take a shape.
There’s things I can tell you now you can hear.
And you can tell me how you feel inside.
I’d like to know.
11
My world is small, beautiful, deep.
Will you hold my hand, gently?
Listen, my fingers reach out to you.
I’ve learned so much, here.
I’d like to share my world with you
now you’re alongside me,
holding my hand, listening.
Now it’s you, and me.
Let’s talk, together.
Love this
Beautiful. So nuanced, so delicate, so powerful.
Thank you Maxine
so moving
eloquence in the moment
exquisite
so open and real
my toes are wanting to dance too!!
thank you
Kate
♥️🎵🎹🎼
Thank you, Maxine. I think it's so good that you can express this
dis-ease we have, and I hope that many will read it and take it in.
Julie xxx
J
Beautiful. Moving, and challenging.
Louise