Dementia Can’t Destroy "The Things Between Us"


On May 1st, 2014, Living Words, an arts and literature program created to help people with dementia and their caregivers communicate and connect with each other, published its first paperback entitled "The Things Between Us." The book is a collection of words and poems of some of the men and women living with dementia in a UK care home. Author Susanna Howard has had the pleasure of working with these individuals one-on-one with since 2007. Howard shares her experiences with these patients and her inspriation for this book below.

From the Author

Each person we work with receives a customized 'Living Words Word Book,' featuring their own unique words—words that are then read with staff and relatives; words that speak of how they are feeling and experiencing life.

It is our aim that these workbooks and the recently published anthology will help families, carers and the general public understand more about what it feels like to live with a dementia. We want to take away the fear factor and help people maintain relationships with their loved ones for longer periods of time—to maintain the things between us.

Lynda Bellingham and Meera Syal (both famous UK actresses, writers and Alzheimer's campaigners) have endorsed "The Things Between Us." Bellingham says, "I would so love to have had this book when my mother was struggling with Alzheimer's." Syal calls it, "Powerful, moving and important…essential reading."

At the book launch, Julie Carroll, a relative of a man I have worked with, spoke about her perception of Living Words and the impact it has had on her dad, Geoff, and the entire family. It was great to hear!

Carroll said that when she first saw me working with the residents, she dismissed me. When I told her I was working with her father and that he would have a book to explain how he was feeling in his own words, she thought, "Yeah, right. Good luck, love!" In her words, "I thought Susanna was a crackpot!" But when she got her dad's book, that all changed.

Julie said her dad read his words with her, that he agreed with what he had written and said that was truly how he felt. Julie had to take a moment to collect herself afterwards. She went to the bathroom and cried. She had assumed her father could no longer read and that he was incapable of expressing himself in such a way. "His words are poetry!" she said. And whilst it is difficult to hear how hard and sometimes bleak it is for Geoff, Julie and other members of the family recognize the relief that being heard has given him. One of his poems follows.

What Am I Playing At?

I live in two places pretty well,

Trying to think on what the position is -

Why are we not playing the game we used to play?

Looking back I – What? I just can't think

I was more or less by myself

No longer in that position

I'll try, think, wait a minute…

How strange - in two positions, seem to be

My original thing all dates back

Cannot pull myself back

To what I have been.

Thinking back at the moment

©Living Words

I believe that, in 20 years' time, the idea of artistic interventions like Living Words not happening in care homes will be seen as absurd. But, for now, many people still view what we do in they same manner Julie did at first. Without having witnessed our work, they see us as "crackpots" and the work as having no value.

Professor Paul M. Camic, a leader in the field of evaluating arts in health projects in the UK, wrote one of the forewords for "The Things Between Us" because people need proof of the impact of the work we do before they can believe in it. This has ever been the way with humankind.

In the meantime, we carry on. We want to help you, the caregivers, be able to connect and be with your loved ones long after they go into a care home. We enable families to see their loved ones responding when they thought responses were no longer possible, speaking when they thought the words had dried up, and expressing togetherness when they thought they had vanished into a closed world.

We are here to tell you that communication is possible, between us.

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Your article points out a valuable lesson: If someone has difficulty communicating, it doesn't mean they don't have feelings; they are just locked up; we should never make the assumption there is no key.

I received a letter from “Maggie” (“What to Do About Mama?” p. 146), who informed me of her husband’s passing. She shared a poem that was read at his funeral by their pastor. I would like to share it in turn with you.

Heart Memories

I remember you with my heart.
My mind won’t say your name.
I can’t recall where I knew you;
Who you were
Or who I was.

Maybe I grew up with you,
Or maybe we worked together,
Or did we bowl together yesterday?

There’s something wrong with my memory,
But, I do know you.
I know I knew you
And I do love you.

I know how you make me feel;
I remember the feelings we had together.
My heart remembers.
It cries out in loneliness for you,
For the feeling you give me now.

Today, I’m happy that you have come.
When you leave,
My mind will not remember
That you were here,

But my heart remembers.
Remembers the feeling of friendship
And love returned.

That I am less lonely
And happier today,
Because you have come.

Please don’t forget me;
And please don’t stay away
Because of the way my mind acts.

I can still love you.
I can still feel you.
I can remember you with my heart;
And a heart memory is maybe
The most important memory of all.

For more information, visit my "What to Do about Mama?" blog: bgmatthewsblog.wordpress

Barbara M.
What I would have given to have this as a tool.when going through this with my wonderful mother. We (her family) were so lost and afraid. There was plenty of help for her physical needs but no help for the emotions that none of us knew what to do with. As a side note mom emigrated here from England in the '50's.
Wow! I really like this poem. It so reminds me of my Mom. I am sending a copy on to my siblings and father. Mom doesn't always remember how we connect but she knows she know us and loves us and knows we love her. Who wrote it?