Finding the Poetry in Dementia
For over 20 minutes poet Susanna Howard sits in silence, waiting for *Ellen to speak. Ellen has profound dementia, and verbal communication can be a struggle for her.
Finally, a single word wiggles its way past Ellen's lips.
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"Human," she says.
Howard makes a note on her pad and resumes waiting.
Over time, with help from Howard, Ellen's utterances take on a totally new form:
King or Queen
It's called ‘Patient Condition'
You must not just say
‘Good morning', ‘Goodbye'
It minimizes the relationship
Try and appraise, interest
Tenderness, consciousness, confidence
The fact that you are sharing with them
Uplift the feeling
‘Feel better already,'
Make us feel human
Not just a dummy.
Pretend you have all the time
In the world
We feel like King or Queen
Breathing new life into the words of the dementia-stricken
Howard is the brains behind "Living Words," a revolutionary program designed to foster creative communication between people who have dementia and the rest of the world.
"I find it very sad when people say the essence of a person goes when they have dementia," she says. "I believe the person you loved is still there, operating from their essential self, free of the ego that created the person you knew."
A writer and classically-trained actor, Howard didn't set out to transform the way dementia sufferers communicate.
Having experienced the healing power of words in her own life, she simply wanted to help other people understand how words, both written and spoken, can be used as a salve for the emotional wounds inflicted by traumatic events.
After just one day of working with the men and women in the dementia care unit of a local facility, Howard was hooked. The first older woman Howard worked with gave her an unexpectedly poignant perspective on the impact of her work; "She took my hand and said, ‘Now you know two worlds, the one outside and the one inside in me and you must go and tell all the people.'"
It's a message that Howard has taken to heart.
For years, she's been steadily growing the Living Words therapy model, which involves not only working with people who have dementia, but also holding communication workshops to help people working in care facilities better understand how men and women with cognitive impairment express themselves. She also works with family caregivers to help enhance the interactions they have with their elderly loved ones.
Her ultimate goal: to make Living Words a worldwide program. The initiative has spread throughout the UK and Howard is preparing to publish a book that features the poems written by men and women living with dementia.
Lettuce shoes and lessons in lucidity from ‘The Philosopher'
Working with people who experience memory loss and delirium is a singular experience, according to Howard.
"People with dementia tend to use language that more directly links to their emotions and what they really want to say than the rest of us do," she says. "They use words that wouldn't typically be used in an ‘ordinary conversation.'"
For example, one woman Howard was working with kept talking about lettuce. The woman's fixation on this salad staple was perplexing to Howard. That is, until she looked down at the woman's feet.
"She was talking about the bandage on her foot, which was badly wrapped. From her perspective it looked like an upside down head of lettuce."
And, Howard says that just because a person with dementia isn't overly chatty, doesn't mean that they aren't aware of what's going on around them, Sometimes they just need someone to sit patiently with them and listen.
Such was the case with ‘The Philosopher,' a mostly-mute gentleman who Howard worked with in a dementia care facility. After seeing the poem that their sessions produced, the man dubbed it a ‘call to arms, positive action.'
The staff members at the facility were so stunned by the profound perspective the gentleman expressed that they began referring to him as ‘The Philospher.' They had incorrectly interpreted his silence to mean that his delirium was so advanced that he wasn't truly in touch with reality anymore. "Now they understand that he understands them," Howard says.
Communicating with a person who has dementia
Howard's ultimate goal is to help deepen the connection between people who are living with dementia and the rest of the world. Her primary focus is enhancing the relationship that caregivers (both professional and family members) have with the men and women they care for.
When working with caregivers, Howard puts an emphasis on the idea that "all words are okay." She says that oftentimes family members especially will start speaking less and less to a loved one who is cognitively impaired, for fear of upsetting them.
But, it's vitally important to keep the lines of communication open with a loved one, even as their interpersonal skills deteriorate.
Howard offers some guidance for dementia caregivers seeking to enhance their communication with their loved one:
- Be kind to yourself: As the old adage goes, you must take care of yourself in order to be at your best for your loved one. Being overly exhausted or stressed will make it difficult to adopt the air of patience necessary to engage in meaningful communication with a person who is cognitive impaired. (Discover how to be your own best friend while caring for others)
- Don't pursue perfection: Perfection and predictability are oxymoronic terms when it comes to dementia care. There will be days when attempts to talk with a loved one will be met with indifference, or even outright hostility. Howard suggests quelling the urge to finish a loved one's sentences, or asking them to clarify what they mean if they say something confusing. Striving for the ‘perfect' interaction will only serve to demoralize and isolate a person with dementia. (Learn how to prevent the caregiver 'fix it' mentality)
- Don't shy away from silence: When communicating with a cognitively impaired loved one, sometimes silence really can be golden. It may seem awkward at first, but Howard urges caregivers to, "Give your loved one time to respond and offer them quality attention. Embrace silence and being." Remember, she had to wait 20 minutes for Ellen to say a single word. Just sitting with your loved one can foster a deeper sense of connection and intimacy.
- Be present: Treat every day and every interaction with a loved one as a separate entity. Focus on the moment itself. "An event may be dull and routine for you, but is likely being experienced anew by your loved one," says Howard.
After you've gone, it's quiet
But my brain is still going.
I speak my mind, my feeling
It comes naturally—
Everybody can have it—
You are a human person, that is all.
My brain is still ticking—
Is very ordinary, common.
My brain is still warm—
Turn the page,
Put the reader in it
Not all me, me, me
After you've gone, it's quiet
But my brain is still working
*Name has been changed to protect privacy