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A hug is duct tape for the soul.


From CARE 2:

For 20 minutes, silence blankets the room, punctuated only by the soft breathing of two women who are seated, facing one another.

The eldest of the two struggles to speak—she has dementia and talking has recently become difficult for her.
A single word, “life,” finally ekes its way out of her mouth.

The other woman, a poet named Susanna Howard, makes a notation in her notebook. Once she’s finished, she takes her eyes off the page and resumes waiting.

Sometime later, thanks to Howard’s ministrations, the elderly woman’s remarks have, almost magically, become woven into a new pattern, at once familiar and unique:

Lived a Life
Nobody here asks what you did
In your life
It seems they seem to think
We were put on earth with broken legs
And have come here for sympathy

Nobody wants to listen
I’ve had a stroke
Words don’t come out
And they say ‘Yes, yes’—
Don’t really want to know

It sounds silly
But it’s quite true
We have all lived a life

Giving a voice to those silenced by dementia
Howard, whose motto is “All words are okay,” is the creative force behind “Living Words,” an innovative form of art therapy aimed at giving people with dementia a new voice.

Too often, says Howard, people with cognitive impairment are written off by society.

Even close friends and family can become unsure of how to communicate with loved ones who have lost their ability to form coherent thoughts and sentences. Most hesitate to speak to dementia-stricken people for fear that they will upset them by asking a question that can’t be answered, or say something that unintentionally offends them.

Of course, not speaking only serves to further alienate the individual living with cognitive impairment. “I find it very sad when people say the essence of a person goes when they have dementia,” says Howard. “The person you loved is still there, operating from their essential self.”

We all just want to be heard
Different dementias can affect different people in different ways.

For example, the early stages of Alzheimer’s disease are often marked by progressive memory loss, while individuals suffering from Lewy-body dementia often experience vivid hallucinations and delusions.

It’s no wonder that most outsiders become easily baffled and thus hesitant to engage a cognitively impaired friend or family member.

But avoiding interactions only isolates that individual further, making him feel unheard and almost in-human.
That’s what makes the poetry sessions are so helpful.

According to Howard, going through the process of writing a poem, and then hearing the finished verse spoken back to them, can help people with dementia feel connected. “When a person hears their words, they resonate with them; even if they don’t recall saying them. This resonation prompts a feeling of being heard on some level,” she says.

Number 65
The chair—it’s so dirty feeling
I’m not in running order
Where do you go to when you
Go out?
I keep out of walking mode
With the mainframe
In the convoy—don’t go around much
I wish
Wish I could drive in a big car
Drive away in a car, oh
Oh I, I wish, wish I could
Fly just fly right away
To number 65—Not
Drifting along at nothing

Continue reading for more poetry by people living with dementia.

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