Dementia

The Disease of Remembering

Peacock - Photo by Kareen King

Peacock - Photo by Kareen King

It was my birthday on a day with no time commitments. Free to decide how to spend my time, I chose to visit my friends, Brenda and Loren. Brenda and I go back years, having discovered a common thread of love of adventure and anything edgy and out of the box. I used to take groups of older adults, many with dementia, to their country home to see her farm animals. I would arrive with a full bus of up to twenty folks, open the side door, and Brenda would usher in dogs, goats, baby chicks, sugar gliders, her snout-painting pig, and even a farting turkey, to name a few. The residents delighted in holding them and watching their antics.

CD Cover Design and Photography by Brenda Cox

CD Cover Design and Photography by Brenda Cox

Brenda also designed the front and back covers and booklet for my CD, The Person in the Picture Ain’t Me. It’s an album of original songs about people in long-term care who feel dismembered from belonging because of dementia, disabilities, and dying. She, a talented professional photographer, photographed some of the people featured in my album, and also spent time with some of them. One of her favorites was Jewell, the 101-year-old lady on the album cover who once said of the photo by her bedroom door, “That’s my name, but the person in the picture’s not me.”

During those years, Loren held a prestigious job at a nuclear power plant. Whenever I saw him, most of his conversation geared around how proud he was of his wife and kids and all their amazing abilities. One time he gave me a tour of their back yard which extended much further than I had ever known. Surrounded by forest, he had created a walking trail just for Brenda and delighted in showing me how it was a secret portal to wildlife, as she has always been a lover of animals.

Years later, Loren’s cognition began to show signs of decline until one year, he was no longer able to pass the annual cognition test and was let go. After a series of tests, Loren, a man in his fifties, was diagnosed with early onset Alzheimer’s disease. True to form, Brenda has somehow brilliantly navigated Loren’s well-being while juggling several jobs. All the while, Loren continues to demonstrate his typical positivity, gratitude, and pride in his wife.

So, back to my birthday. I chose to pop in on my friends to give them a little cheer after a setback in Loren’s health. When I arrived, I saw Brenda’s car was gone, so I gave her a call.

“Brenda, are you home? I’m sitting in your driveway.”

“I’m picking up groceries,” she replied.

“Well, I wanted to come visit you and Loren on my birthday, but I don’t want to alarm him with my presence. What should I do?”

“Just knock on the door and say, ‘It’s Kareen.’”

So I did just that. Loren answered the door and let me in while their beloved Corgi jumped up and down with excitement. I was then invited to sit down on a couch in the living room while Loren took a seat in the couch across from me. I had intended on only staying a few minutes, thinking that all that was needed was a brief reminder that someone cared. Instead, I wound up staying at least an hour. Though he struggled a bit with some word retrieval, he still managed to tell me how proud he is of his Brenda and how she can do anything, which is pretty true, by the way.

And then suddenly he switched gears.

“What happened to the church?”

Gulp. I now realized he had a sense of who I was, even though he had never addressed me by name. You see, many years ago he had been the chairman of the leadership team of the church in which my husband was its most recent pastor. I tried to explain as simply and generically as I could what happened to our church that is currently recovering from some unfortunate fall-out.

“You know, just a couple days ago I couldn’t walk. And now I can. I just keep moving forward one step at a time. We’ve got to keep moving forward, love people, encourage people.”

“Yes,” I agreed, tears now flowing.

“Love people, encourage people, forgive people. Keep moving forward.”

He said it again, and again.

“I have the disease of remembering,” he then declared.

The disease of remembering? Surely he meant the disease of forgetting. Was he just confused? I think not. How poetic it is that Loren sees his disease in the positive manner in which he has always lived his life. Though he is forgetting words and people and how to do certain things, he’s remembering what matters.

I have been a part of the Memory Bridge Retreat (founded by the brilliant Michael Verde) for several years where there’s a great deal of focus on “re-membering” those who have been “dis-membered” from the body of belonging. We hone the skill of listening more attentively. Each year I do a concert about Emilou whose songs are featured in my album. I tell the story of how we first met – an occasion in which after repeatedly hollering for help from her room, I went in and asked what she needed.

“I want to die,” she replied. “I’m an old maid. I want to die. Just bury me in the pasture.”

She repeated the plea several times, holding me close to her face.

“I’m all alone and lonely,” she continued. “I never wanted a husband. I wanted a best friend.”

We all want to belong. It’s what keeps us going.

So, back to Loren and I.

“I’m so glad you came here,” Loren said with tears in his eyes.

“So am I.”

I stood up. He stood up. We hugged. I thanked him for reminding me to keep moving, keep loving people, keep encouraging people.

As I headed back to my car, I noticed Brenda’s pet peacock was in full strut mode. Of course I had to take several photographs. Love followed by beauty. Two of God’s greatest gifts.

I had gone to encourage one I thought had been dis-membered, when it was me who had been dis-membered. In essence, we re-membered each other. It’s what the great philosopher Martin Buber would call an I-Thou moment. It was the truest moment I could ever wish for on my birthday.

Note: If interested in the album, “The Person in the Picture Ain’t Me,” click https://store.cdbaby.com/cd/kareenking

Find Me: A Reflection on Friendship and Dementia

Today is the birthday of Emilou who died in 2008. I've shared her story in keynotes, concerts, and workshops and in two albums I recorded back in 2007 and 2010. Here's a story in her honor.

Find Me

By Kareen King

It was a typical morning in the world of long-term care. Residents were resting in their beds, situated in living areas watching television, observing people enter and exit, eating breakfast in the dining room, or interacting with staff. Kitchen aides were washing dishes and clearing tables. Caregivers were busy attending to residents’ needs. Therapists were helping residents achieve mobility. Hospice workers were supplying comfort to those who were dying. Department heads, preferably called support staff, were working from their laptops or working out care strategies or staffing issues, and so forth.

I had just arrived and was headed straight to my office, hoping not to be deterred by anything or anyone, because I thought I had a lot of urgent things to take care of. However, there was no way I could ignore the sight of Emilou who was seated in her wheelchair in the dining room, directly in my path, eagerly waiting for my arrival. As usual, she called for help, just after having finished her breakfast. I responded immediately, inviting her to a gathering for individuals who have dementia, in hopes the invitation would give her something to look forward and eliminate her need to call for help.

I went on to my office to check my laptop for staff communication and to look over plans for the day. Impatient, she called for help again, so I left my office and wheeled her around with me while I did errands, thinking I could kill two birds with one stone. I asked if she had any songs on her mind. Instantly, she started singing, “I’ve been working on the railroad,” and I joined her. We sang enthusiastically, moving from one favorite to the next including, “Let Me Call You Sweetheart,” “Jesus Loves Me,” "Take Me Out to the Ballgame," and “Hallelujah, I’m a Bum” to name a few. So far so good.

Eventually, in the spirit of camaraderie, Emilou asked for a drink.

“I want something good,” she requested.

I suspected that “something good” likely referred to her favorite drink, Pepsi. Yet, since I was in a hurry, I didn’t want to be inconvenienced with the additional effort required in servicing this special need. Instead I offered her ice water.

“No thanks,” she replied.

Knowing full well she probably wanted the soft drink that just the day before she referred to as the “drink that makes me quiver,” I took advantage of the fact she hadn’t specified her drink of choice. It hadn’t yet occurred to me that her request likely was an indication of the kinship she felt between us.

“What would you like to drink then, Emilou?”

“I don’t know. Whatever you’ll give me.”

That’s all I needed to proceed with my plan. I quickly prepared a cup of ice water, brought it to her, and offered her a sip.

“That’s not good,” she reacted, spraying both me and the floor with ice water. I was dumbstruck, having never been treated like this by her before.

“Emilou, you said you wanted a drink, so I brought you some ice water.”

“I wanted something good!” she shouted.

“So what do you want then, Emilou?”

“I want your nose. That’s what I want – your nose,” she lashed out. “I’m going away from you. You aren’t any good.”

Stinging from the outburst, I calmly attempted to justify my actions. “Emilou, you said you wanted something to drink and I asked you what you wanted. You said you’d take whatever I gave you, so I gave you ice water. So what is it you want?”

“Someone to be nice. You . . . they were so nice, but then they turned on me.”

It then dawned on me that I had just become the scapegoat for previous unpleasant encounters of her being dismissed or ignored. For example, it was once relayed to me that Emilou had been removed from another nursing home, years earlier, for flinging hot coffee on a caregiver. It was obvious that Emilou wouldn’t have attributed my selfish actions to the Kareen she had come to recognize as loving and trustworthy.

One of my coworkers gave me a knowing glance, coaching that it would be best if I gave her some space. She was soon rehearsing familiar phrases such as, “Help!” “I’m so beside myself,” I’m lost,” “I hurt.” Emilou, who had been sitting erect and eager, slowly sunk into herself as her volume diminished with each passing word.

What she spoke next stupefied me.

“I want you to find me,” she spoke feebly, back slumped and head facing the floor.

I walked toward her and invited her once again, with some trepidation, to the gathering I had invited her to earlier. She accepted, but not with the enthusiasm I had witnessed at my initial invitation. I brought her into the room to join her peers. By now, however, she looked like the typical “slumper” one might conclude as the by-product of negligence. Only this time, I was to blame. As she continued to complain of pain, I removed her from the gathering so the others could carry on without disruption.

I then returned her to her neighborhood where I re-encountered the coworker who had given me the knowing glance.

“This is what we experience from her every day,” she noted.

I went on to focus on the other residents, checking if there was anyone else who needed to be at our gathering. As I headed out for one last glance, I looked in on Emilou again because she was calling for help. This time, she accepted my invitation, and she and I returned to complete the number of attendees in our gathering.

The next 45 minutes were spent sharing ways in which we are lifted up or can lift up others. For the most part, Emilou’s head hung with her eyes closed. At one point when she lifted her head, I capitalized on the moment.

“What lifts you up, Emilou?” I asked.

“Being with someone who thinks they love me.”

After the gathering, Emilou accepted my invitation to join in our next activity, Movers & Shakers, an exercise group that featured creative rhythm and movement. I situated her, a bit more uplifted, in a new circle of individuals.

“I want you to hold my hand,” she declared.

I held her hand for a moment.

“I’m thirsty,” she added.

“What would you like to drink, Emilou?” I inquired.

“It doesn’t matter.”

“Would you like a glass of ice water?”

“Yes.”

I fetched her glass of ice water, pondering her change of mind. She took a sip from a straw.

“Oh, it’s good,” she stated. “I didn’t get it on ya, did I?”

“Oh, no, Emilou. You’re fine,” I reassured her. “Do you want another sip?”

She took another sip.

“I don’t want ya to get hurt,” she persisted.

I considered the profundity of the moment. Emilou, though forgetting details like names and places, hadn’t forgotten how others make her feel, or how she felt about herself after a combative episode. Emotions go much deeper than words – a curious phenomenon in the mysterious world of dementia. I was fascinated with Emilou’s subconscious awareness of the need to make restitution amidst the murky waters of time and place confusion.

And so, Emilou and I were friends again.

Happy birthday, Emilou.

Emilou.jpg

What Individuals with Dementia Say About Their Brains

Lone Coyote in Cornfield - Photography by Kareen King

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