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

How to Connect With a Difficult Individual

A frail man, he wore thick rimmed glasses and had uncharacteristically dark hair for his old age. I would often find him seated in the same spot in his trademark position – right elbow propped on the dining room table holding his face upright while cupping his right hand over his forehead, with worrisome expression.

Even his peers could reanimate his caricature when referring to him. That’s about all we knew of him besides being nearly blind and keeping to himself most of the time.

Other than a couple of bus outings, “Frank” rarely participated in any group experiences. I was intrigued. What made this man tick? Who was he?

“Frank,” I ventured, “What kinds of hobbies did you enjoy before you moved into the nursing home?”

“Oh, I don’t know.”

I continued on with a series of personal questions which were always answered in ambiguities.

“What has been the most exciting adventure in your life?” I probed.

“One time I went to Alaska.”

Surprised at this revelation, I thought I’d finally discovered a topic that would enliven him. Getting specifics about the highlight of his life, however, was quite challenging.

 “Did you enjoy it?”

“It was alright.”

“Alright,” was the adjective Frank used to describe everything. Otherwise the world, through his eyes, was rather dismal.

Nonetheless, I made it a point to join him at the dining room table for lunch whenever possible.

The conversation played out typically as follows.

“How are you, Frank?”

“Alright,” he’d respond, still looking downward as he rubbed his forehead.

“Does your head hurt?”

 Does your head hurt? Was that my all my brilliant mind could come up with? No wonder the poor guy’s facial expression never changed when he was around me. I was breaking the eleventh commandment – “Thou shalt not bore us.”

“No,” he replied, “I’m having a hard time breathing.”

“Oh, I’m so sorry to hear that. I sure hope you feel better.”

In those moments I couldn’t tell if I was more bored with him or myself. My adventurous spirit kicked into neutral whenever I was with Frank. Finding subject matter to discuss with him was like trying to locate a penny in a cornfield.  We’d merged together as petrified marshmallow and stale graham cracker, making the perfect s’more, only with an “n” for the “m.”

What if I had started our conversations with yes-no questions such as:  Have you had any interesting dreams lately? Do you like sauerkraut? Do you think there are aliens on Mars? Do you like our president? Have you ever flunked a subject? Do you like licorice? Do you wanna play truth or dare? Can you speak a foreign language? Can you smile for me even if you don’t feel like it? Do you want a hug? Are you bored right now? Do you wish I would go away?

Last week, I sat with him again at lunch. The conversation went along as usual. However, this time I noticed a slight shift in his demeanor.

“Well, Frank,” I started as I stood up from my chair to venture on simply out of utter mental paralysis, “I just wanted to stop by and say hello and see how you’re doing.”

As I moved away from Frank’s table, he turned his head in my direction.

“Thanks,” he said with a hint of enthusiasm and an increase in volume.

Though this sincere exchange of camaraderie would have been non-apparent to anyone else, it was monumental to me.  We had finally connected. It was the highlight of my day. Little did I know, it was to be our last conversation.

The next week a man entered the building asking for Frank’s whereabouts. I had just gotten word that Frank had passed. Assuming he was a family member or close friend, I didn’t know how to break the news.

“I’m the funeral guy,” he explained.

This man had come for the body.

Funny, I’d hoped he’d come to see Frank.

What if I had just shared my photography with him?