Biographies & Memoirs

The Well Spouse: My Journey of Love, Resilience, and Alzheimer's

By

This book will launch on Dec 4, 2020. Currently, only those with the link can see it. 🔒

Loved it! 😍

What a touching & truthful tell-all about the challenges of Alzheimer's.

Synopsis

(Adapted from Midwest Book Review by D. Donovan, Senior Reviewer)

This book is highly recommended for caregivers, friends, and family members of people with Alzheimer’s or other chronicle illness, and adults and seniors in general. It is an intimate, whimsical, and yet powerful story of the author's 9 years of progressively challenging care for a husband with Alzheimer’s.

The author asks how a 'well spouse' survives being a caregiver and partner to someone with such a devastating, deteriorating condition, when he doesn’t even know who you are. It is a retrospective review of events that changed the author's life. Her story alternates between first-person memories and the third person, using poetic, lyrical description to capture the interactions and challenges that Alzheimer's introduces into the relationship. There are many cultural revelations, where her Chinese heritage injects perceptions of solutions and problems that are different from Western thinking.

The philosophical and ethical considerations of this process are thought-provoking. The colorful and diverse characters in the story are intriguing. Black and white photos enhance a different kind of caregiving story. These elements expand the story's approach and theme of an Alzheimer's patient, his spouse, and social and cultural encounters beyond most caregiving books.

JoAnn Wingfield, in her memoir, ‘The Well Spouse: My Journey of Love, Resilience and Alzheimer’s,’ presents a positive case of affirmation of the need for awareness of a disease that has overtaken many lives. She mixes her well-versed credentialed knowledge and research into the disorder and its treatments with a peppering of her personal experiences as a caregiver. The result? She gives a much-needed, much-appreciated book offering caregivers tips on survival themselves during the journey with their loved ones who are challenged with the condition.


For nearly a decade, the author walked, ran, crawled and wandered through the ups and downs of helping her husband through Alzheimer’s. Her writing method seesaws between a narrative and a third-person style with such an expressive and personable nature – and in some parts the prose turned into poetic phrases. She grabs our attention in the beginning. “Fate likes to deal us unexpected cards. In a split moment, one’s life can take drastic turns. Sometimes, it is not for the better, and often, we are not prepared. Yet, people must choose to play the cards the best they know how.” And Dr. Wingfield did just that, and shares with readers how to do that.


The author gives a perspective based on her Chinese roots and technical and philosophical credentials while at the same time offers the reflections of a loving wife.


“I am Dr. Rabinowitz, an ophthalmology neurologist at the University of Miami medical center. Do you have a moment? I need to talk to a family member about Dr. Wingfield’s diagnosis. He said I should talk to you, no one else. My heart dropped. Suddenly, I broke into a cold sweat and felt weak.”


Can you even imagine? My heart felt for the author as she took that phone call about her husband. She knew he had been going through some assessments, and he had told her in a phone call the day before that they thought he had ‘dementia.’ The author listened to the doctor while standing in the middle of the airport. Pretty soon after, their adventure with Alzheimer’s began, and JoAnn Wingfield took every step as only a wife could. Relying on her education credentials, her husband’s credentials, logic, love and resilience even when times were tougher than she expected, the Wingfields faced it all. Which is why the novel is titled correctly, and why I highly recommend it.

Reviewed by

Becky has had a 'serious love affair' with books since she was old enough to know what the word 'love' meant.

A former award-winning newspaper editor with a bachelor's degree in English/journalism and a master's in psychology, her goal is to help you get your book out there.

Synopsis

(Adapted from Midwest Book Review by D. Donovan, Senior Reviewer)

This book is highly recommended for caregivers, friends, and family members of people with Alzheimer’s or other chronicle illness, and adults and seniors in general. It is an intimate, whimsical, and yet powerful story of the author's 9 years of progressively challenging care for a husband with Alzheimer’s.

The author asks how a 'well spouse' survives being a caregiver and partner to someone with such a devastating, deteriorating condition, when he doesn’t even know who you are. It is a retrospective review of events that changed the author's life. Her story alternates between first-person memories and the third person, using poetic, lyrical description to capture the interactions and challenges that Alzheimer's introduces into the relationship. There are many cultural revelations, where her Chinese heritage injects perceptions of solutions and problems that are different from Western thinking.

The philosophical and ethical considerations of this process are thought-provoking. The colorful and diverse characters in the story are intriguing. Black and white photos enhance a different kind of caregiving story. These elements expand the story's approach and theme of an Alzheimer's patient, his spouse, and social and cultural encounters beyond most caregiving books.

The Diagnosis


In the middle of the journey of our life I came to myself within a dark wood where the straight way was lost.

—Dante Alighieri, The Divine Comedy



Fate likes to deal us unexpected cards. In a split moment, one’s life can take drastic turns. Sometimes, it is not for the better, and often, we are not prepared. Yet, people must choose to play the cards the best they know how.


It was an ordinary day in October 2002. As my plane was descending into Boston’s Logan Airport, I took in the view from my window: fall had already painted one of those spectacular landscapes so characteristic of New England—fiery red, simmering crimson, glittering gold, and various shades of yellow spread across the fields. When I had left Dallas a few hours earlier, summer still had its distinctive presence.

Dragging my ultralight carry-on through the chaos of Logan’s crowded hallways, I walked briskly to catch a taxi before a line formed. The vigorous walking made me hot. Occasionally, a breeze came in through the automatic doors with a suggestion of the cool, crisp day outside, where I could see the Boston sun shining happily over a tapestry of color. Carefully avoiding collisions with other travelers in their comings and goings, I was vaguely conscious of the loudspeakers’ monophonic tone warning travelers to be vigilant of unattended luggage and suspicious behavior, somehow managing to diminish people’s awareness with each repetition.

My cell phone rang. I immediately recognized that the call was from the Miami area, but the number was new to me. Without slowing down, I responded with the usual matter-of-fact tone I used for calls of unknown origin, “This is JoAnn.”

At the other end was an unfamiliar male voice with a heavy foreign accent. Russian, Polish, or was it Romanian?

“I am Dr. Rabinowitz, an ophthalmology neurologist at the University of Miami medical center. Do you have a moment? I need to talk to a family member about Dr. Wingfield’s diagnosis. He said I should talk to you, no one else.”

My heart dropped. Suddenly, I broke into a cold sweat and felt weak.

“Yes,” I replied, holding my breath as if the man at the other end of the line might evaporate into thin air if I breathed too hard. All the chaos and noise around me had receded, as though I were all alone in a vast, empty hall. I managed to sit down on a nearby bench and continued, “I have been expecting your call.”



The day before, in Dallas, Clyde had called me from Miami, where he had been undergoing psychological and cognitive assessments. “My psychological evaluation is complete. The doctor said that I have dementia.”

“Dementia? What is dementia?” A quick search of the English dictionary in my brain did not yield any meaning. Another new English word for me? It sounded quite innocent, like “differentia,” small deviations, nothing to cause alarm.

“Dementia is a kind of memory loss. I guess I’ve just gotten lazy since I retired.” Clyde didn’t seem to be alarmed either.

“Did the doctor say what the cause was? What should you do? What should I do? What should we do?” I was always eager to attack a problem.

“The doctor said it could be Alzheimer’s disease. I told him do not label me with anything. I don’t want to be put into a box!”

So typical of men! So typical of Clyde! Self-assured, he would never in a million years let anyone tell him who he was, what to do, or what problem he had, not even his doctor. Instead, most unambiguously, he told the doctor exactly what to say.


Born in the early 1930s in a small Southern town, Clyde was a Depression-era baby. When he was about four years old, he contracted pneumonia and nearly died. He remembered lying in bed, unable to move or talk, listening to the doctor telling his mother that he would be dead before sunrise and hearing his aunt asking his father to remove his baby shoes from the bedside because, when he was dead, his mother would never remove them. Miraculously, he beat the doctor’s prediction and survived. At the tender age of twenty-two, after graduating from university and finishing his ROTC training, Clyde became an Air Force officer. It was then the end of the Korean War. He flew airplanes and presented intelligence briefings to generals. After the war, on GI Bill funding, he completed a master’s degree in finance and a PhD in public administration, then went on to serve in senior positions in higher education, including several university presidencies.

He was well read and well traveled, quick to give and reluctant to receive, easy to amuse but difficult to fool; he could be frugal but was never stingy, and thrifty but never cheap. He feared nothing and stopped at no obstacles. He used to quote to me in his magnificent baritone voice from the King James Bible with an Air Force twist and an exaggerated seriousness, “Yea, though I walk through the valley of the shadow of death, I will fear no evil: for I am the meanest SOB of all!”

Nothing called “dementia” could possibly defeat a man like Clyde.

But Alzheimer’s is an entirely different beast. Didn’t President Reagan have that?

When I heard the term Alzheimer’s disease, the word dementia lost its ring of innocence. Still, I held on to the “Wingfield Confidence”—Wingfield may be wrong, but never in doubt. Surely there could be a mistake. Surely there would be something we could do. Hadn’t Clyde always provided more solutions to every problem we had ever encountered?



Clyde’s voice pulled me back from my thoughts. “Dr. Rabinowitz said he needed to talk to family members about the diagnosis. I told him the only one he has my permission to talk to is you. He will call you soon.”

We agreed that the doctor’s name would be Rabbit, because it was too hard for me to pronounce, much less to remember how to spell, such a complicated name.

“OK. I can hardly wait for you to be back.” I ended that conversation.


I spent the rest of the day trying to convince myself there was nothing to be worried about. Hadn’t Clyde said there was nothing to be worried about? Wasn’t he almost always right? Yet an uneasy feeling lingered. That word, Alzheimer’s . . .



“Are you aware of the psychological and cognitive evaluations we were working on with Dr. Wingfield last week?” On the other end of the line continued Rabbit’s Eastern European–infused voice.

“Yes.”

“I have completed the analysis. Dr. Wingfield has dementia.”

“Clyde told me that. He said that dementia is a form of memory loss. It is quite common as people age. What can you tell me about his dementia?”

“Well, dementia is a general term for memory loss. There are many forms of dementia. My diagnosis of Dr. Wingfield is that he has Alzheimer’s disease, a specific form of dementia. It is a progressive and degenerative cognitive disease that is not reversible.”

All of a sudden, the air at the airport felt thinner, and I thought I couldn’t breathe. Did he say what I thought he said? Did he mean what he said? Did I hear what he said? Did I understand correctly what was said? After all, my English comprehension had failed me many times before. Small misunderstandings sometimes caused big misunderstandings, like pleasure and pressure, ego and eagle, vacation and vocation, or message and massage. One time I emailed a male colleague telling him that I would give him a massage, whereas I really meant message. It puzzled me why he looked so awkward when I saw him later.

But Rabbit was clear. So clear that the words Alzheimer’s disease, though coming remotely from over a thousand miles away, were brutally distinct, striking me like the blows of a heavyweight boxer and making me dizzy.

“Dr. Wingfield has made it very clear to me that I should not label him. I will respect his wishes by not calling him an Alzheimer’s patient, but I must talk to a family member about his disease. He said the only one I should talk to is you.”

“Yes. He told me that.”

“Dr. Wingfield said that he is retired and is now a consultant to the University of Miami Board of Trustees. Is that true?”

“Yes.”

“Dr. Wingfield cannot make decisions. As his physician, I must tell you that it is inconceivable to me that he still works.” Dr. Rabbit sounded appalled that a consultant to the board of his university was mentally impaired. “His cognitive ability is severely compromised. He does not have the faculties to make sound judgments.”

How ironic! Didn’t Clyde used to repeat the old joke, “Old university presidents never die. They just lose their faculties”?

“He said that he still travels by himself. Is this true?”

“Yes. We sometimes travel together, but he frequently travels to Miami by himself for his work with the board. I can’t always be with him on these trips, since I work at Southern Methodist University, in Dallas.” I felt a need to explain, as if I were guilty of not always being at his side. “The rest of the time, he stays in Dallas with me.”

“Dr. Wingfield cannot travel alone. His memory is impaired. He will get confused and he will get lost. It is not safe for him to travel alone. He must be with someone when he travels. His condition will deteriorate. He will eventually lose not only all his ability to remember, comprehend, and recognize but also his ability to take care of himself. You will need to safe-proof your home as everything can be hazardous to him, and as his condition worsens, he cannot be left alone without help.”

At the other end of the line, Rabbit’s voice continued to tell me candidly, though not inconsiderably, about the dismal prospects of Alzheimer’s disease. Meanwhile, my mind took off on its own path. For a couple of years, I had suspected that something was not right with Clyde’s mind. Certain things had started to go peculiarly wrong: occasionally, he would leave drawers open, leave the water running, fail to turn off lights, and even sometimes forget to flush toilets. And he began to have traffic accidents. This sloppiness was most definitely un-Clyde, who had always been clean, neat, and an excellent driver. I thought that his good behavior was due to his Air Force training and from having worked and lived in Manhattan and other big cities where driving skill was more essential to one’s survival, but he attributed his remarkable self-discipline to having had a good mother. To try to make sense of his seemingly careless behaviors, I had even joked with him that he might have Alzheimer’s disease.

To try to resolve my lingering suspicion over “Does he have it or does he not have it?”, I had started to educate myself about Alzheimer’s disease. While I had not been able to diagnose him myself, I had some general understanding of what was in store for a person with Alzheimer’s and for me, his well spouse.

I knew Clyde would gradually descend into a black hole, where there would be no friends left, and there would be no family left; everything would become unrecognizable, then everything would become incomprehensible. The past would disappear, and the future would never come. Eventually, there would be nothing left in his consciousness, neither him nor me. Yet our lives would continue. For years? For decades?

On the other end of the phone, Dr. Rabbit ended the conversation with these sympathetic words: “I am very sorry. Your life will be very difficult as his disease progresses. Take care, and good luck to you.”


Trickles of warm, salty liquid in my mouth made me realize that I was weeping, in public. Pain of losing a loved one is a pain so intense that no painkiller, regardless how powerful, can ease. I had just been given a death sentence for Clyde, the man who for the past thirteen years had been my mentor, my anchor, my partner, my best friend, and my protector. I was facing the most profound loss of my life. In the vast, crowded hallways of Logan Airport, I felt terribly alone as I sensed that Clyde’s strong support, the support that had sustained me like indestructible pillars, was crumbling. Sadness crushed on me like a tumbled mountain, and the ground underneath me fissured. At the same time, from the deepest core of my being, a somber determination slowly emerged: Clyde, you have made me a stronger woman. I can and will take this journey with you to wherever the end might be.

“The will to win, the desire to succeed” were the words of the ancient Chinese philosopher Confucius, the wisdom of my ancestors.

With these words of encouragement by my ancestors echoing in my mind, I walked out of the airport, Dr. Rabbit’s parting words still resonating:

“. . . good luck to you.”

About the author

JoAnn Wingfield was raised in Shanghai, China. During China's Cultural Revolution, she was sent to Inner Mongolia for "reeducation." She came to the United States in 1986. She has a doctorate in Instructional Technology, worked as tenured professor and in executive positions in higher education. view profile

Published on September 11, 2020

80000 words

Worked with a Reedsy professional 🏆

Genre: Biographies & Memoirs

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