Sharing Your Story, In Spite of the Shame


As the saying goes—a problem shared is a problem halved. For people experiencing symptoms of dementia, sharing how you are feeling can give validation and bring relief. It is up to those of us who don't have dementia to allow people to express themselves as they are, without reproach or correction.

Living Words workshops take place in care homes over the course of three months and the final stage is a sharing event. Residents, staff, relatives and Living Words team members come together to share poems from residents' Living Words Word Books, and staff share their words and experiences with the project.

At a recent sharing event, one woman arrived early. She had not lived in the care home long and I was surprised to see her. Her diagnosis was very recent and her esteem was rock bottom. She had changed over a very short time frame, and used the words "blank" and "empty" a lot to describe herself. While we were working together she said "If my words can help people understand and help people like me not feel so useless and lonely, I want them heard, oh I do!" But I was doubtful that she would want to share her words with a whole room of people, due to the shame she expressed about having the illness.

This is one of her poems, it's called "Whatever This Is:"

Whatever This Is

When it started off it was
Shocking to me, they'd say I said
Something. I'd not know, and now
Whatever this is - has hit me
Will not get better
It came on all of a sudden
Did notice different things I was doing
Funny things, sudden
And now I am
Just a nothing with nothing
I've forgotten my words
At the end of my life
So real, so true, yes

As the event took shape and we had shared the words from many of the group's Living Words Word Books, it came to be her turn. I said what I always say: "We worked together, I wrote down your words about how you were feeling and this is your book. Would it be okay if I shared one of your pieces with the group?"

Tears running down her face, she nodded. I double checked and said "I will stop at any point on your say so." As I read her poem, murmurs started from other people in the room. An "Oh yes" and a "That is it!" came as I read more. When the applause came at the end, she said "I had no idea other people living here felt like this, the same as me. I'm not alone!"

Her word for the group poem was "calm." And, as I left, she was talking with other residents, calling each other friends.

So often in life it is hard to see that anyone else feels how you do. Words can connect us, even when they seem to be fragmenting. But we all need to let the words out about how we are feeling; how we are coping. A problem shared is a problem halved. Be kind to yourself and your loved one. Listen to each other and accept the words you each say.

Susanna Howard is creator and artistic director of Living Words, an arts and literature program that uses the spoken and written word to help people with dementia and their caregivers communicate and connect with each other.

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