Alzheimer's disease

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