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
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.