What Individuals with Dementia Say About Their Brains

Lone Coyote in Cornfield - Photography by Kareen King

It’s my intention to bridge the gap between loneliness and friendship through creative engagement gatherings. For example, I once used The Wizard of Oz’s Scarecrow character as a creative conversation-starter. The above image, by the way, makes me think of the Scarecrow in the cornfield. Amazingly, no matter how advanced the person’s dementia, each individual had a quick response to my invitation to say something about their brain. I have constructed the following poem out of their comments:

My Brain
My brain
Doesn’t have both oars
Got rusty
Is too small
Is slow
Is pretty good, but slower now that I’m older
Is soft
Is non-existent
Tries

My brain
Is not that whippy
Is retired
Is on vacation
Works overtime
Is blank
Is still working good
Is dancing

My brain
Is still going
Is smart
Is powerful
Does a pretty good job
Is tired
Is not too great
Is revved up and doesn’t know where to go
Is full of information
Is thoughtless
Has kept me going for 88 years

My brain
Is full of joy
Escapes me when I want to think of something special
Is sometimes very good
Is always busy
Has good memory for my age – 95 ½
Is stuck on the wind and gone
Is weary
Is sometimes pretty dormant
Still works

Speaking of brain, I spend time each week with a small group of individuals with advanced dementia symptoms. They are not able to carry on verbal conversations with me, other than short phrases. So, my means of connecting with them are through music, photography, eye contact, touch, and saying their names. I was once introduced to a resident who was in the process of moving in to her new “home.” Her two daughters stood behind her.

Within minutes, the staff ushered her to a chair next to a darling 95-year-old woman whose enthusiastic response to our time together is incredibly endearing. I opened our gathering with “Mairzy Doats,” a nonsensical song from their era and which has become our opening ritual. The new resident immediately sang with fluency, clapping her hands and clasping the hands of the lady seated next to her as they swayed to the rhythm. I was moved to tears when I saw the two daughters weep together in the background as they observed their mother’s “awakening.” The timing couldn’t have been more perfect, as I imagined much of their anxiety surrounding the letting go of their mother to the hands of others, dissipated in the 30 minutes we shared together. It was hard to maintain my composure as I imagined what it would be like to be in a similar position with my mother and sisters.

Oliver Sacks, best-selling author and neurologist, wrote that “it is the inner life of music which can still make contact with their inner lives which can awaken the hidden, seemingly extinguished soul; and evoke a wholly personal response of memory, associations, feelings, images, a return of thought and sensibility, an answering identity.” Genuine love and caring makes it even richer.

In the meantime, for a great resource on how to generate brain-engaging moments, I recommend my book, “Engage! 28 Creative Enrichment Experiences for Older Adults,” available by clicking: http://seniortheatre.com/product/engage-28-creative-enrichment-experiences-older-adults/ 

I also do creative engagement workshops and present keynote concerts that move, touch, and inspire individuals who serve older adult populations to connect with more empathy and creativity. For more information, contact me by email. I would love to connect with you!

 “I’m lucky because up till now my brain has kept me on an even keel. I don’t go to the edge of cliffs or swim in the deep sea,” – an 82-year-old Irishman

Reporting on the 2016 Pioneer Network Conference Experience

Pictured above is me mirroring Mavis during "To Be Somebody's Someone," one of two sessions I presented at the Pioneer Network Conference in New Orleans. Both sessions, "Let's Get Unreal!" a creative engagement half-day intensive, and "To Be Somebody's Someone," a 1 1/2 hour session featuring original songs and narratives about what it is to simply be with another human being in an "I-Thou" relationship, were well received.

I was thrilled when one of the participants in the "Let's Get Unreal" intensive, Debra Block of Hebrew Senior Life in Boston, approached me saying she's been using the curriculum from my book, "Engage! 28 Creative Enrichment Experiences for Older Adults" for about a year. She said, "I find it's the only curriculum I can relate to as an Artistic Theatre Activities Director." All 40 of the books sold out at the Pioneer Network Bookstore. If you're interested in purchasing one for yourself, click here.

Another woman, Kathie Ferguson of Levonia, MI, shared after the session that she jumped right in and created a rough draft of her own creative engagement event, "Mardis Gras Experience."

The 2016 conference, titled "Revolutionizing the Culture of Aging," featured a plethora of sessions on ways to facilitate a culture of aging that is life-affirming, satisfying, humane, and meaningful. One highlight was the Tuesday Morning plenary keynote, "CNA Edge," featuring three Certified Nursing Assistants who blog about what it's like to work in the trenches of long-term care. They relayed the gap between them and the rest of the "system," saying that genuine culture change can't truly change until caregivers are understood. The following list conveys some of what they experience in the trenches:

1. They learn to adapt quickly.

2. Conversations that are insane to others are their norm.

3. They meet demands that make no sense.

4. They shrug off being bombarded by bodily fluids.

5. Humor saves their sanity.

6. They have days that make them wonder why they're in this field.

7. If they stay in this field long enough, their perception will be changed.

One thing was clear. They deeply care for the elders they serve, and are committed in spite of the less than desirable hourly wage. They don't appreciate when others tell them that being a CNA is just a stepping stone to a better career.

A personal highlight was a session facilitated by Molly Middleton Meyer, founder of Mind's Eye Poetry. Upon returning to the trenches the day after the conference, I immediately applied her practical tools on facilitating a meaningful and engaging poetry experience. I'll blog about that in a separate post. But, for now, here's a teaser. It's just one of several poems created collectively from three different group of residents. This one was created by six women with advanced dementia.

Preferred

I see a man playing a guitar

He’s wearing green, yellow, red

He’s wearing a hat

He’s singing

I hope it’s a happy song

Someplace where there’s a crowd

Where people gather with friends

He’s singing loudly

It’s beautiful

What makes me happy is food

What makes me happy is when I’m preferred

Because I do

Sometimes I feel preferred

Sometimes not

It depends on who it is

We all see around here

And now, I leave you with a collage of images of Bourbon Street.

Creatively yours,

Kareen