Alzheimer’s is a bizarre disease. Many fear it more than cancer, stroke, heart disease, and other illnesses. To be told you have Alzheimer’s casts many of us into despair. “It’s the beginning of the end,” many feel. We certainly felt that when my wife was diagnosed two decades ago with early onset at the young age of 50; our three children were still in high school and college. Our world wasn’t turned upside down; it imploded before us.

Geri Taylor somehow sees her early-stage Alzheimer’s differently. She seems to have taken it in stride—as yet one more of life’s obstacles to hurdle. “Mrs. Taylor was wired to absorb adversity,” writes The New York Times, “and she pictured Alzheimer’s differently, with gumption and defiance and through a dispassionate, unblinking lens.”

*Alzheimer’s advocates: Live fully while you can*

The year was 2012; Geri was 69 years old. She awoke with a fright one morning as she peered into the bathroom mirror: “I didn’t recognize me!” It was then that Geri knew she needed to see a neurologist.

“The diagnosis didn’t surprise me. In my work, I’d seen a lot of persons with dementia and Alzheimer’s,” including her parents and other family members. “Since my diagnosis, my career has significantly influenced our path.”

Geri spent more than four decades in the health care field, first as a registered nurse (RN) before earning a Master’s degree in public health; subsequently she served many years in administration. Before retiring, Geri was the chief operating officer of a major hospital in New York City, where she and her team developed an in-home Medicare/Medicaid program that now serves 80,000 persons.

Thus, this professional’s take on her own condition: “I am continually developing strategies to function fully as possible while compensating for my declining short-term memory. I’m also gaining comfort with the deteriorating fluidity of my language.”

(On occasion, I’ve mentioned that while negotiating our family’s 17-year odyssey I would like to have found resources and persons like several I’ve come to know today. So…I’m adding Geri Taylor and husband Jim to that wish list.)

Her self-prescribed “strategies” are creative and filled with common sense…and they evolve with the swings in her changing condition.

How does she think like this? I wonder as I listen to Geri.

Ever the caring nurse, she responds in a friendly, pointed way: “Well, if you break your leg, you need a crutch. The same with Alzheimer’s. Our goal is for me to stay independent as long I can.”

Geri has an uncanny knack of focusing this listener’s attention as we talk by phone. I can only imagine what it’s like to have a conversation with her in person.

I highlight Geri’s strategies here along with husband Jim’s insights as a care partner. (Their comments come from our several conversations; from their materials; and from a New York Times story [more on that later] and a recent interview on the Being Patient website.)

Geri begins: “This is most important. I intentionally spend time with friends and family, and I let them know I love them”…
She realizes that people often think that an “ill person” is too consumed to think of others, and so they back away. “Knowing this, I take it as my responsibility to initiate. And, it works! This is extremely important, as ‘feeling loved’ and having social reinforcement is a great antidote to potential sadness.”

It also worked with husband Jim. His reaction to Geri’s diagnosis was unlike hers. “I was depressed and withdrawn for awhile. Like a lot of men, I went into my cave.”

“I decided to let Jim be, to work through this the best way he could.”

Jim: “I began to reemerge after a few weeks. Geri’s patience and understanding helped me work out of it pretty quickly…When I came back to the table, we talked and talked. Finally, we decided Alzheimer’s is not going to run our lives. We are going to live as fully as we can and not worry about tomorrow.”

Geri: “After we shared the news, our family and friends responded wonderfully. The sooner you tell, the better they can embrace you. It’s a real gift, taking them with us on our journey.”

“I have two groups of good friends—my lifelong ones and those from about the past 10 years. My relationship with the lifelong friends is no different although my condition is hard on them. The same with my family. Nor have any of my more recent friends pulled away, yet many are full of questions relating to what they may be experiencing.”

Geri’s dance with sadness…
“For me, the emotional pain doesn’t go away, but I adjust to it day by day, making changes and accommodations. This is not denial; this is allowing other aspects of life to continue to function in the foreground.

“Actually, it is no different for me than it is for anyone, whether they are living with Alzheimer’s or not. We all face the same destiny. Some of us know more specifically what might be the cause. Others are still, as I like to say, ‘free-range with the options.’

“Knowing more about the disease while dealing with the early signs allows me the opportunity to recognize the preciousness of every mundane or extraordinary experience in my life. My days are filled with gifts—a thank-you note from my niece; playing with my granddaughter; a call from a friend.”

Talking together and working through decisions as a couple has been vital to each other’s wellbeing and sense of purpose…
“This may sound unusual,” says Jim, “but while we have always had a good marriage, we have never been closer than we are now. We are united in our commitment to one another and to living fully as we can.”

Geri agrees.

*Finding life in an unsought barrenscape*

They spent six months before deciding to tell their family and friends of Geri’s diagnosis.

Geri: “My therapist told me not to tell anyone.” (Even as late as 2012, the stigma surrounding a “mental disability” like Alzheimer’s could be heavy and oppressive.)

Jim: “As well intended as this therapist’s warning was, that proved to be our dilemma. Should we join this conspiracy of silence? And if we did, how should we go about living our new lives? This was the question we faced during our six-month sabbatical while keeping the diagnosis to ourselves.”

*At ease with my condition, my environment, my self*

Geri: “I can’t imagine living a dual life of trying to keep this a secret from our family and friends. The energy that would take! I’ve got to work at dealing with this disease rather than using my energy to hide it. The more I know, the more I accept…there’s a feeling of power within yourself to do that. I can’t imagine trying to place another persona on top of who I am.”

Geri draws up a practical list of things to remember from one day to the next…

Exercise and eat right. While walking, talk only when necessary. Falling—and I have—can be common with Alzheimer’s.
Keep things as neat as possible, and reduce the number of things.
Avoid driving myself when possible. Walk or take taxis or trains as substitutes.
Take yoga or exercise classes to improve balance.
Continue to read by choosing books with fewer characters and straight-line plots, all set in chronological order.
Keep my smart phone with me at all times.
Reflect daily on the significant aspects of my relation to family and friends.
Seek out others “just like me.” I’ve been fortunate that New York City has multiple programs for people with Alzheimer’s. I felt 100 percent better the day I sat down with nine other people just like me, and heard them search for words and thoughts, and at the same time, sensed their intelligence, good humor, and motivation. There is nothing like being “different” with your own people.
My general idea is to keep all things tuned up—mobility, diet, vision, good relationships. This is probably half the medicine that we need.

Continue with your hobbies if possible, or find a new one…
Geri: “Photography has been my 30-year hobby. Retirement provided the much-desired additional time while Alzheimer’s stole much of the technical expertise. But many assists came to my rescue—auto settings on the camera, a tutor, and a six-week workshop at the Alzheimer’s Association. These supports gave me the confidence to continue my work while also showing and talking about it.”

“I’m the one who usually buys the brown dress. But all of a sudden my ‘color box’ has opened up. As I do my photography, I’m seeing different shapes and forms and colors from before. Now I see more globally.”

(Editor’s Note: Geri sent me a variety of her photos, several of which I show throughout this post. I am struck not only by her artistic sensibility and professional execution but also by—or is this just my imagination?—the overtones of these photos relative to Geri’s self-awareness of Alzheimer’s and its symptoms.)

Jim is Geri’s partner, not her caretaker…
Jim: “At first I was being too helpful. Geri explained to me that she needed to discover her own strategies. So I backed off.”

In our phone conversations, it was clear that Jim gave Geri all the space she needs to answer my questions and make her point. He stepped in only when Geri asked for a word or fact.

Geri: “The first need of the person living with this disease is TIME and PATIENCE. Jim and I have built a culture between ourselves for me to be comfortable enough to say, “I need you to slow down, to let me do it my way.”

Jim: “As we share our story, it’s important for others to understand that we’re not perfect. I make mistakes every day as Geri’s partner.”

Geri pipes up quickly: “And I keep a list of his mistakes.”

~~~~~~~~~~~~

In May 2016, The New York Times published a 12-page feature in its national and international editions on Geri and Jim’s experiences, titled Fraying at the Edges. The award-winning journalist found them through the local chapter of the Alzheimer’s Association. The Taylors permitted reporter N.R. Kleinfield to follow them for a couple of years. They became familiar enough that the Taylors soon knew him as “Sonny.” (This nuanced read is well worth the time if you want to better understand what it’s like to live and respond to a disease like Alzheimer’s.)

“Sonny’s interactions with us was therapeutic for me,” says Geri.

What do you mean? I ask.

“His probing made me think. His observations and questions were mundane, to the point that he was annoying at times. But his prodding reminded me of things I’d forgotten or it helped me see in a different way. His genius was in being able to draw out the mundane and in doing so, give it meaning.”

The Times’ story soon elevated the Taylors to a national platform from which they could share their story, and they’ve taken full advantage. For example, Jim gave me a rundown of all they did this past October: a) Participated in three national conferences; b) Helped develop and lead a training program designed to instruct researchers, those with dementia, and their partners on working collaboratively while researching the disease’s social and behavioral issues; c) Gave six individual presentations in person or online; d) Spent a day in Hartford, CT, to help revise the state’s Alzheimer’s plan; and e) Spent a day in New York City on an Alzheimer’s Walk.

The Crisis in Alzheimer’s Research

Geri and Jim not only share their story nationally and locally, they also are strong advocates for clinical trials.

“We’ve decided to do everything that we can to address this issue,” says Jim. “The crisis in Alzheimer’s research, in our opinion, is not the lack of research funding. Rather, it is our inability to increase clinical trial participation. Surveys show that while 80 percent of Americans are willing to participate in an Alzheimer’s trial, less than one percent of those living with dementia actually do.”

While federal spending for Alzheimer’s research has increased six-fold the past five years to $2.4 billion, “there has been no parallel effort to increase the number of trial participants. Current recruiting methods simply are not working. We need new ideas and approaches and more funding to solve this enrollment problem, and we need them now.”

For her part, Geri—ever the health care professional—began researching soon after her diagnosis for available trials. Odds for a positive outcome from a clinical trial were not in her favor: Over a two-decade period starting in 1998 about 150 trial drugs have failed. (My wife participated in one in 1998.)

In 2015, Geri “had the good fortune” to be accepted into Biogen’s trial for a drug called aducanumab (where do they come up with these names?!). This trial was closely watched worldwide because it was viewed as a leading candidate for possibly modifying the disease. Then the heartbreak: Biogen discontinued the trial in the spring of 2019 due to insufficient evidence of its effectiveness. But this fall, after reviewing its data more fully, Biogen now says it will seek FDA approval for the med in the first quarter of 2020.

Geri had been on this treatment for four years when Biogen pulled the plug. Self-aware as she is, Geri thinks her condition was stabilizing during the trial. How is she now, after being off for six months? “I find it harder to remember words as I talk.” Meantime, Geri and Jim, along with the rest of the world, await the next move by Biogen and the FDA.

But neither one is slowing down. Both are pushing hard to build a national coalition that’s focused on improving the participation rates for Alzheimer’s clinical trials. “We have a vested interest,” Jim exclaims.

In early December, the Taylors attended the annual conference of CTAD (Clinical Trials on Alzheimer’s Disease) in San Diego. In advance of the conference, they had organized an independent hour-long meeting to discuss the problem of trial participation. Twenty-seven invitees showed up, including four pharmaceutical companies, several nationally recognized researchers, a prominent advocacy organization, a national organization of clinical trial sites, the National Institute on Aging (NIA), and several individuals living with the disease.

“It was an excellent first meeting.” says Jim. “We accomplished what we’d hoped for. All bought into the problem. There was a substantive, free flowing discussion. At the close, there was widespread agreement to continue with a full-day brainstorming session in first quarter 2020. I’m busy now putting that together.”

Jim also was instrumental in helping UsAgainstAlzheimer’s create its Clinical Trial Toolkit. “It’s a step-by-step guide written for the layperson, not the professional.” If interested in participating in a trial, this toolkit can tell you what to expect from a specific trial and can point you to a trial site near you; over 100 of the nation’s top trial sites are highlighted.

…Life’s Changing Seasons…

Geri gets the last word…
“For us, as important as our national work is, we love the opportunities to meet with newly diagnosed individuals, who are struggling in a world that they did not expect to enter and are searching for guidance. These are the most rewarding days for us. Talking to people and letting them see the face and good intentions of a person living with the disease will go a long way to breaking down another’s stigma and fear.”

Geri remembers a man at one presentation who had become increasingly isolated by his dementia. After listening to her talk about photography and seeing some of her work, he was inspired to join an art class. “That makes all this worthwhile,” she says.

“There are so many interesting turns to this journey. If I hate my diagnosis, then I hate my experience as well as myself.”

“Since we’re in this country called dementia, we might as well enjoy it.”

~~~~~~~~~~~~~

Thank you, Geri and Jim, for sharing your story and strategies with us in such a meaningful and heart-warming way.

May we let this season of Christmas and Hanukkah fill us with all hope and joy.

Thanks for tuning in,
Carlen Maddux
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 As usual, feel free to forward this post to your friends and family. If you would like to receive my posts, you can sign up here. They are free.

PS2 My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with this disease. My high-energy wife Martha was 50 when diagnosed; I was 52. Our three children were still in high school and college.

PS3 Ever since I published a post on the two advocates who were instrumental in making the Alzheimer’s stamp a reality, I’ve been tracking its sales. As of November, more than 8.2 million stamps have been sold raising $1.06-million for Alzheimer’s research. Starting December 1, 2019, the USPS no longer will sell these stamps other than the excess inventory at local stations. Although this stamp had a two-year life, efforts are underway to extend it. Stay tuned. Congratulations to Kathy Siggins and Lynda Everman for helping make this stamp available, and to you for making it successful by sticking one stamp at a time on your mail!