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.”
Continue reading to read additional poems written by people living with dementia…
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.
The chair—it’s so dirty feeling
I’m not in running order
Where do you go to when you
I keep out of walking mode
With the mainframe
In the convoy—don’t go around much
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
Changing the way we communicate
In honor of National Poetry Month, we wanted to take the time to highlight the incredible power of poetry to connect human beings through each life stage.
For her part, Howard hopes that her work will help alleviate some of the apprehension that accompanies communication between those trapped in the alternate reality of dementia and those operating in the outside world.
It’s difficult for Howard to pinpoint the most poignant lesson she’s learned while working with men and women living with dementia, “It can’t really be summed up—I am constantly surprised at how powerful the work can be,” she says.
She does admit that one of the most refreshing aspects of working with these men and women is the fact that many of the filters imposed by society and propriety are stripped away, leaving refreshingly raw and honest observations. “People with dementia use language that more directly links to their emotions. They tend to say how they’re really feeling.”
In addition to her work with the dementia-stricken, Howard also holds seminars and workshops to help people working in elder care facilities comprehend how people with dementia express their thoughts and feelings.
Her hope is that Living Words therapy paradigm (which has been rapidly spreading throughout the UK) will grow into a model that’s used around the world. Howard is currently working on publishing a book of poems written by people with dementia.
I don’t know really, because
It scares me to hell
I don’t know what to do—
It was so disgusting—I just sat there, doing
I thought I was
In an asylum I was
Ashamed that I
These people were people who, well they are
Old age pensioners. They made me an
Pensioner. I was
Really annoyed—terrible isn’t it
There’s nothing wrong with me—
I just don’t do
Lost—that’s all I can say, because
I’ve never felt
So you now have the whole thing.
I can’t say it myself.
The saddest thing.
By Anne-Marie Botek, AgingCare.com Editor