One man's quest to embrace his Alzheimer's disease

We received a very special note of thanks from a customer on our Facebook page:

"My husband is a writer and often shares his journals at events. ...gotta' tell y'all...people love them and make over them. He is told to leave them in museums.. now being 76......he loves the comments and loves sharing each illustration, line and moment. He is in his 4th year of Alzheimer's.. you make his day just a little better."

"He has more than 100 journals and 3 published books. .I'll send some photos...he must have about 6 Jenny Bick and won't change now. I'll need to order a birthday one soon. He like the party pages....thank you for the note...you are helping to keep a mind alive a bit longer..."

"Thank you...he loves the journals...textures, colors and space...he also loves the leather...the smells and suppleness...all about the experience."

The note came from Jeanette Hopkins, the wife of avid journaler, Bruce Hopkins. As we chatted, we learned something remarkable. Bruce is using his Jenni Bick Journals to keep his mind active in the face of Alzheimer's Disease.

We love a good journal story, so we clicked over to an article recently written about Bruce in The Des Moines Register. What we learned about Bruce and about Alzheimer's was such a heartening reminder of why we do what we do. Journals are a truly personal and important thing for so many of our customers. A warm reminder from Jeanette and Bruce of our true purpose is just what we needed to bring a little joy to our week. 

One man's quest to embrace his Alzheimer's disease

Mike Kilen, The Des Moines Register

Sioux City — Bruce Hopkins arose six times during the night to pace, his wife first noticed five years ago. He shuffled across the bare oak floor, his calloused heels creating a scratching sound that signaled the start of a confusing transformation.

Today, Bruce Hopkins walks among trees and draws fallen leaves.

He sketches them in journals that have accompanied him throughout his life. Around their edges is a tight cursive of prose.

“This is the face of time,” he writes.

Hopkins, of Sioux City, has Alzheimer’s disease. He could have disengaged after the diagnosis three years ago. But he takes walks in the woods, he stood on the line of oil pipeline protesters in Iowa. He draws, reads voraciously and writes about his experience, which he says keeps his mind active.

He won’t go gentle into that good night, his friends say. His wife, Jeanette, won’t let him, either. She urges him along, and together they have honed a message.

Alzheimer’s is not a death notice, although both know there is no cure. Instead, it’s a time to recognize the cycles of life and adapt, to maintain a sense of self and contribute until it’s time to go on.

“I know that beneath the leaves things are not still,” he writes in “The Art of Decay,” to be published this spring by Ice Cube Press.

Bruce Hopkins, 75, has spent his years with Alzheimer’s not only writing a book that gave him purpose. He’s adapting.

To say it’s been easy would be fiction. The 63,000 Iowans and 5.4 million Americans who faced Alzheimer’s in 2016 can attest to the brutal decline from the degenerative brain disorder.

Loss of memory, language, problem solving and cognitive skills progress until even talking and eating become difficult in advanced stages, and other daily needs require full-time care.

But a study in the journal Neurology in 2013 found that reading, writing and participation in other mentally stimulating activities can help memory and thinking and may help stave off symptoms of Alzheimer’s in old age. The researchers also raised the possibility that those activities can stem decline from dementia.

The research is not definitive yet, say officials with the Alzheimer’s Association of Greater Iowa. But they encourage patients to stay physically active, eat right, stay socially engaged and engage in cognitive activities such as reading and puzzles during the progress of a disease that can run two to 20 years.

“Anything that increases the blood flow to the brain, the more oxygenated, the better off we will be,” said Carol Sipfle, the association’s executive director. “In the case of Bruce, he has been writing for years. That part of his brain is well developed. So he will maintain that longer than someone who was never a writer.”

Bruce has been a runner all his life. He took to the road every day for two or three miles. He stayed active on the county conservation board’s foundation.

And he filled his journals with memories and the leaves.

I left the mountains by train and came west to find my way, committed to human rights, the environment and anti-war.

He wrote of teachers who demanded silence, but silence leaves him cold. He wrote of his days growing up in the Catskill Mountains of New York, of  going to college though he nearly flunked out of high school, and of meeting Eleanor Roosevelt and Nelson Rockefeller.

He wrote of the days of race riots in the 1960s, where he stood alongside students after he had graduated from Wayne State College in Nebraska. He wrote of his days of getting a doctorate and of teaching at Iowa State.

“As one part dies, we open another,” Jeanette said. “We’re adapting. Animals adapt to environments, even now with climate change. Why not humans with disease?”

Each leather-bound journal was filled, the latest in 2016 beginning with this:

I approach this new journal with a deep commitment to living life to the fullest of my capacity.

Bruce writes often of nature and of his solitary sojourns to encounter wildlife there.

“When he used to come and visit us, little animals and birds would show up in our yard,” said sister-in-law Paula Horii in New Jersey, who helped edit his book. “I’ve never had a hawk in my yard until he came. They know he will write about them. A good writer makes you see things you haven’t seen before.”

He was often seen hiking near the nature center with his granddaughter who had heart issues.

Standing under the towering trees, Bruce talked of the links with his granddaughter and the rights of people who are disabled, which he says can come in many forms.

“I’m a firm believer that every one of us is disabled,” he said.

He wrote of those walks in his book, peering into a pond with his granddaughter, in deep silence.

“Nearby, the elemental faces of leaves, discarded by the season, were transformed in status and purpose of decay.”

The art of decay, says Jeanette, is finding the beauty and humility in it.

“No one cycle is best or better. They simply are,” she said. “It is actually in our humanness that we come to understand this. The art of decay is accepting and celebrating at the same time.

But they also know you can't stop the decline.

“That is the reality of the disease. There is no getting better,” she continued. “But what we are trying to do is prolong his time.”

Jeanette says that often only she can notice his changes. She misses their "alike thinking and rhythm of an experience." The other day, she brought up the new appointment of the chair for the Democratic National Committee, and Bruce responded with a discussion on Napoleon.

"I miss those magical, meaningful moments of intellect," she said. "We still have them, but I have to catch those whispers when I can. We are soulmates; we haven't lost that. But it's like losing a part of yourself."

She says his decline to a moderate level of Alzheimer’s has slowed in the last year, however. His writing is becoming richer. He's freeing his inner feelings and memories and trusting the art within him.

 

Bruce had his journal in hand as they talked, just in case. When the light goes on, he says, you have to capture it.

And when the light starts going out, you accept. You might find that sentiment in a poem in his new book.

I would like to die
With a poem of Ferlinghetti
On my lips…
My hair slightly disheveled,
And a look on my face
Which surpasses all understanding.


Prevalence of Alzheimer’s Disease

  • An estimated 5.4 million Americans of all ages had Alzheimer’s disease in 2016, all but 200,000 age 65 or older.
  • One in nine people age 65 and older (11 percent) has Alzheimer’s disease.
  • About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.
  • Eighty-one percent of people who have Alzheimer’s disease are age 75 or older

... Read More at the Des Moines Register. All photos credit to Kelsey Kremer / The Register

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