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?

How to Start a Conversation about Mortality

“How old will I be when I die?” I once asked a Quija board that my parents had stored in the basement when I was in junior high. This followed by, “How will I die?”

I watched my fingers involuntarily shift a pointer amongst the numbers and letters on the board until I got my answer. The answer, though disturbing, didn’t faze me much because the end seemed an eternity away. I was to die of brain damage at the age of 53.

A few years later, when I placed my trust in the Creator instead of the Quija board, I “renounced” my former “supernatural” activities which included Kresgin’s ESP, following my daily Horoscope, playing “Light as a Feather” during grade school sleepovers, telling ghost stories, and participating in child-invented séances. So far, so good.

Though I repented of my “evil” doings, the Quija board number that supposedly marked the end of my mortality remained a tiny voice in my head. As ridiculous as it sounds, I wasn't totally at peace until the clock struck midnight, and I entered year 54 of my life.. Be that as it may, I have no interest in seeing the movie, Quija: Origin of Evil, even though Rotten Tomatoes gives it an 84% which is rare for a horror movie.

In the meantime, I think there is value in “living like you were dying,” as Tim McGraw’s song suggests. Love deeper, speak sweeter, forgive, become the friend a friend would like to have, read the “Good Book,” go sky-diving and Rocky-Mountain climbing, etc., etc.  But many people don’t think that way until they face their mortality. And some never think that way.

I recall a moment while assisting at meal-time in a long-term care community.  I noticed a teary-eyed woman seated at a table with three friends. I sat down beside her and asked what was wrong.

“Everything,” she replied.

“Do you not feel well? Are you lonely?” I probed, putting my arm around her.

“I’m always lonely,” she cried.

I then noticed the loving efforts made by her three table-mates to console and cheer her. I began asking her about her life.

“I remember everything,” she declared.

“Is that a good thing or a bad thing?” I probed.

“None of it will ever happen again,” she lamented.

In an effort to provide a more helpful framework for her to review her life, I informed her about Dr. Seuss’s wisdom, “Don’t cry because it’s over, smile because it happened.” I suggested she think of her mind as a sanctuary, reliving the memories with gratitude. It seemed logical to me that one could draw comfort from drawing from such a well of beauty and meaning whenever one saw fit.

“You’re preparing me for death,” she chided, resisting my efforts to coach her through this important chapter in her process of life resolution.

Though I hadn’t thought of it that way initially, she was right. I was preparing her for death, albeit an exercise in futility. I am learning much by watching others face or avoid their mortality. Perhaps she felt I was patronizing her in my efforts to encourage her. She is one of multitudes who struggle toward mastering what developmental psychologist, Erik Erikson calls the Ego Integrity vs. Integrity “Wisdom” stage of older adulthood.

Gerontocrats are those who face aging with grace, who make peace with the past, who continue to be grateful for what they have and to embrace life. They have ego integrity. Gerontophobes are those who dread and despise the aging process and fear facing the end of life. Their lives are filled with more regret than gratitude. When they don’t resolve the past, they live with despair.

My oldest daughter Joanna once shared with her family and closest friends, a memoir of her college years in Oregon. Though only 23 at the time, she had the emotional tools to deal with loss. She worked through resolution in short order as she chose the difficult task of saying good-bye to her Kansas family and friends before she moved to Germany to be with the love of her life.

“It is all beginning to hit me – that my life is no longer as I once knew it and that I can never go back to the past and relive anything. It’s moments like tonight that remind me that I need to sort out all that has happened in this time and to feel it all,” were the poignant words my daughter poured out in the height of her emotions.

So, how do we open the door of conversation with our elders about this elephant in the room called mortality? My boss recently blurted out the following question to me and a former colleague: “If the good Lord were to call you home today, would you be ready?” Though it appeared out of nowhere, it led to a very helpful conversation, as I had been struggling with a disturbing dream about the afterlife that I hadn’t yet worked through.

That question was recently used in an assignment with some of my coworkers who work at the two retirement communities I serve. One of my coworkers felt the assignment slightly awkward, wondering if it might be more natural for the opportunity to just present itself as what happened with me and the weeping woman. I share her sentiment, but I also discovered that I welcomed the question, random as it was when handed to me by my boss. We never know who is waiting for us to make the first move in starting what might otherwise be an uncomfortable topic to tackle.

And why not? Our mortality is one thing we all have in common.

So, how do we start a conversation about our mortality? Start from a place of love, take the plunge, and let the chips fall where they may. Though your words may get all scrambled up, love will take care of the rest.