I write to clinicians, reluctant to diagnose because they can’t effectively treat. Please know the inadvertent trauma you inflict on families left confused, hurt, and helpless. Then time runs out on the ultimate conversation with our loved ones about end-of-life wishes. Their minds are erased. It is simply too late.
I write to reach the generation of our adult sons and daughters, who struggle to understand our loves as we care for a loved one with Alzheimer’s. They stand on the precipice and wrestle with issues and decisions similar to the ones we have faced. They deserve better options and not the bankrupting burden of our care. This is not the legacy we want for our children or the way anyone wishes to be remembered.
I write for my grandchildren because, no matter how hard I tried, Alzheimer’s blanketed my home with sadness. I know that loving each of them unconditionally has been my salvation. One day, I hope they read these words and appreciate my choices.
As I write these words, a faint glow fills the room I share with Harvey. He is always present, even though he is absent. There is an intimacy in our isolation.
ME FE NOS SOSTIENE (MY FAITH SUSTAINS US)
DAISY DUARTE,
as told to Lynda Everman and Don Wendorf
I say that my faith sustains “us” instead of “me” because I am now taking care of my mom, who has advanced Alzheimer’s disease. Mom raised my brother and sister and me in the suburbs of Chicago, mostly by herself and in spite of several tough, even abusive relationships. I was the “troublemaker” kid who really gave her a run for her money. Mom got up at 4:00 a.m. each morning and rode four buses and one train to work in the inner city as a teacher’s aide, regardless of the sometimes harsh Chicago weather. These were often difficult times, but she taught us to have faith: “Dios prevalecerá, tu saldrás bien.” God will prevail; you’ll come out of it. It may take years, she said, but you will.
Mom was a devout churchgoer, and she taught us to love the church. We were baptized as Catholics, although Mom eventually found a nondenominational Bible church she loved. She went to church every Wednesday and Friday night and again on Sunday and even found time to cook on Saturdays for homeless people. She loved the practical life lessons she heard at church and felt the Lord was “speaking right to her.”
My brother left for the Marines at seventeen, and when my sister was about seventeen, she had a baby and moved to Missouri. Mom and I stayed in Chicago for a time, and then I moved to Missouri to work in my sister’s and brother-in-law’s restaurant. When I was in my early thirties, I opened my own sports bar, which I loved. But when Mom was about fifty-five years old, she started getting sick and showing lots of problems with memory and her emotions. We moved Mom to Missouri, and I became Mom’s caregiver in my home.
Mom was misdiagnosed at first, and we had some very tough times. For a while, she was able to help some at my sports bar, but at one point she told my then thirteen-year-old nephew to stab her with one of the kitchen knives, even though she had seemed her usual happy, social self. I closed the sports bar and took her home, where the next morning she was still crying and screaming, “God, stop telling me to kill myself.” She was hallucinating, and I took her to the hospital, where they stopped all her medications, which actually helped a little. After a lot more testing, they concluded she had Creutzfeldt-Jakob disease and would die within six to nine months. I took her home, intending to take care of her there until she died. I promised Mom I would never put her in an institution. That was eight years ago.
I did a lot of research, found new doctors, and new tests finally revealed the diagnosis of Alzheimer’s disease. I had had to close down my business, and for the next three years I was her full-time caregiver at home. I didn’t have any social life and suffered some depression but was glad Mom and I could share a lot together, including the Christian music we both loved so much.
I never questioned becoming Mom’s caregiver, even when it cost me a romantic relationship when my partner at that time insisted Mom needed to be put in a home. But my faith and the values of the Hispanic community of taking care of our parents ourselves at home made my decision clear. They did it for us; we have to do it for them. Mom taught us to be independent and to be fighters. My love for her and the help of the Lord keep me going. The only two people I can thank my whole life from the bottom of my heart are my mom and the Lord.
Every morning I start our day by kissing Mom and putting my hand on her head as I make the sign of the cross on her forehead with my thumb. I pray for us by saying, “Thank you, Lord, for giving us another day of life” and “Thank you for dying on the cross for our sins. Forgive us for any of our sins and may you guide us through our day.” Then we do the morning routine of changing diapers, getting cleaned up, feeding her breakfast, getting dressed, combing her hair, and brushing her tongue. On days I work, she is taken care of by my nephew and my partner, who put her to bed days I work late at my brother-in-law’s restaurant.
Even if Mom is asleep when I get home, we end the day with the sign of the cross again and a talking prayer about how the day went. Then I pray for us and thank God for another day and for guiding us through it. I add that “whenever you need to give Mom her wings, I know she’s ready” if that is His will.
In the process of finding the right diagnosis for Mom, I learned from her family in Puerto Rico that nearly 75 percent of Mom’s family has suffered from Alzheimer’s going back for generations. As a result of learning this, I enrolled in the Dominantly Inherited Alzheimer’s Network research study at the Washington University School of Medicine in St. Louis and learned in 2015 that I tested positive for the early-onset familial Alzheimer’s gene.
That means that I will probably have the disease by my sixty-fifth birthday. I am now in my early forties, living with the knowledge that my memories have a limited shelf life, set to expire in twenty-five years. This was all gut-wrenching to go through, and I cried when I first heard my diagnosis. But I want to be able to help my Mom and the rest of the family and the community.
I decided to use my time to fight for a cure as an advocate, a caregiver, and as one of the few Latina participants in an Alzheimer’s clinical trial. Latinos are 1.5 times more at risk for Alzheimer’s, and more than 1.8 million Latino family members care for an individual with dementia. Most are daughters like me who believe in taking care of our loved ones ourselves. I also became a spokesperson for LatinosAgainstAlzheimer’s and I lobby for Congress to give more funds for research.
Caregiving is a high-stress, around-the-clock job. Often the ones we care for don’t remember who we are and cannot dress, feed, or bathe themselves. It takes love, a sense of duty and honor, and lots of help from others. But, my mom taught me: “Si tienes amor sin condiciones, tú puedes emprender todo.” If you have unconditional love, you can tackle anything. She always told us: “Dios prevalecerá, tu saldrás bien.” God will prevail; you’ll come out of it. I believe in my mom and in the Word of the Lord. My faith sustains us.
THE WAY IN
MARITA GOLDEN
The first time I sat in a group of men and women diagnosed with Alzheimer’s disease I felt fear. I have, as I write this, traveled so far from that emotion, that response, that I say the words without any shame. It wasn’t anxiety or nervousness that had my heart beating a bit faster, although what I felt was surely related to the kind of uncertainty produced by those responses. No, I felt fear. Shameless admission number one. The men and women, whose average age was in the middle seventies, were residents of the memory care unit in an assisted living residence where I was doing research for a novel about an African-American family dealing with the impact of Alzheimer’s disease. I was sitting in on a late morning session with the residents, listening to their stories, remembrances, and memories prompted by gentle questioning from a certified nursing assistant. The session was designed to stimulate memories essentially of who these men and women used to be. The question was: “Tell us about the work you used to do.”
The fear I felt was, I now know, lik
e most fear, irrational, ego-driven, and largely based on hypothetical what-ifs. It seems that we humans are always performing and always expecting others to perform for us. So some of the fear I know was inspired by the expectation that this group of mostly calm and gentle, well-dressed seniors would do something, say something, be someone that my arsenal of responses and reactions had not prepared me to handle. There was also the expectation that I, in the midst of a group of people labeled as diminished and intellectually incapacitated, would do something, say something, be someone at odds with the vision of myself as capable and in control of most situations.
Then there was the other fear, the one that haunted me as I spent hours among these people who had lived lives of career and material success that allowed them to be cared for in a residence that did not accept Medicare and cost $5,000.00 a month. The fear that was raw and chilling in the early days of my research, the fear that Alzheimer’s would, as it had come for them, come for me.
But perhaps the deepest and most awful fear was that these men and women were lacking, because of Alzheimer’s, a core, an essence, that would allow me to touch them and to be touched by them, to hear and see them for who they had been and, more importantly, who they were now. I knew I could not write a novel about Alzheimer’s if I could not imagine myself as living and breathing inside their skin.
During the four years I spent researching the novel, I did not “get over” fear as much as I allowed the vibrant, life-giving wisdom and humanity of these men and women to chip away at and dismantle it. And that happened because I was willing to hear and then to listen. What I heard and listened to wove a connecting thread between me and people I was “studying” at first and then came to recognize as my shadow, my echo in ways that had nothing at all to do with Alzheimer’s disease.
From that day I remember the tall, clean-shaven man who sat in the group, legs crossed, periodically shifting his baseball cap on his nearly bald head as he smiled with proud satisfaction and told us, “I worked for the Treasury Department and kept our money safe.” The description of his job sounds so elementary, almost childlike, and yet isn’t that what the Treasury Department does? Keep the nation’s money safe?
The plump, copper-colored woman whose cheeks were smeared with rouge and whose gray curls were topped by a felt hat told us that she had been a teacher. In response to questioning, she could not recall what grade she taught or the name of her school. But I watched her eyes sparkle in the moments before she closed them tightly and for fifteen minutes twice recited a poem her students had to memorize. For most of human history, poems enabled the passing of stories between generations—think of The Iliad or Langston Hughes’s “The Negro Speaks of Rivers.” Poems capture moments and experiences in a new way and communicate one soul to another. Listening to a poem whose title was no longer remembered, watching the fervor with which it was recited, I knew how much that woman’s students had meant to her, and how for her teaching was more art than science. That poem was a fragmentary memory of her whole life.
And there was also the agitated woman sitting beside me, who during breaks in the session responded to my smile with a stream of rambling, repetitive fragments about being a student at Hampton University. Her eyes were both ablaze with life and somehow shell-shocked as she repeated over and over that she lived on campus and had joined the AKA sorority. Clearly, the sisterhood, the sense of mission, the bonds that are the glue inspiring loyalty among sorors gave as much meaning to that woman’s life as she sat beside me as it had maybe fifty years earlier.
That day I learned that Alzheimer’s does not rob us of memories as much as it shifts them around in the house we call our mind. Some get stored in the attic and are rarely touched; others once consigned to the basement are retrieved and given a place of dominance and pride. As I read more about the disease, I came to understand that it is when one can no longer remember, recall, or even learn anything (as a result of the gradual failure of the brain to activate and spur the body to function) that the disease becomes fatal. The absence of memories kills us. We die without the ability to recall who we had been, who we are. What, I wondered, would I remember? What, in the midst of encroaching death, would stubbornly give me life?
* * *
I should have expected the request. In fact, I would have been surprised if at some point it had not come. Still, when it came, my reflexive tendency to overthink and over-plan and over-worry immediately took me hostage. The director of the facility asked me to do a reading and discussion of my work for the residents. Musicians, artists, journalists, she told me, had been guest speakers as part of a program designed to keep the residents connected to the world outside of the facility as well as intellectually stimulated. I knew that I would say yes, and I did, without hesitation even as I wondered if the months I had spent embedded in the lives of the residents, sitting in on their exercises, eating lunch with them in the cafeteria, talking to the certified nursing assistants who cared for them, would not somehow be compromised if I shifted gears. But of course, there was something more. Shameless admission number two: I agreed to do a reading, yet wondered what a reading would mean for me? How would my writer’s ego be fed by an audience that might not comprehend everything I was saying? What if they asked a question I could not answer? Oddly, I never worried about that with other audiences. This phalanx of largely trivial concerns was continuing evidence of how far I still had to go before I was wedded to these men and women, before I saw them as my brother/sister from another mother, as people who I did not have to strive to understand because, although I still did not fully know it, I understood them already because I understood myself.
A digressive note here about understanding oneself and freewill, independence, and control. Since completing the novel, I have read more and more about how as humans we live both burdened and fueled by the belief that free will, independence, and control are the engines of our existence. In reality we are animals activated and controlled mostly by brain synapses, hormones, and genes. Sex, hunger, ambition, creativity, love, fear . . . it may all be a bundle of urges that positions us in a grueling lifelong position of subservience to the whims of our internal biology and architecture.
But as I prepared for my reading, I wasn’t aware of that. I still thought that the best plan was to have a plan, even with an audience of people forced to improvise each moment. I had to have a plan. I had to know what to expect. I had to know what might happen.
Sitting before the residents that afternoon, I had a plan. I had scrapped my original plan, which was to read from one of my novels and then take questions. By now I knew that my audiences’ attention span was more hope than reality, that in fact I had at best about twenty minutes to engage and depart, and that rather than a sumptuous several-course meal, I would make my offering in the equivalent of appetizers.
I took a deep breath, one I hoped no one could hear, and began by saying, “I’m a writer, and I grew up here in Washington, DC. Writing has taken me all over the world.” Then rather than talking about my writing process and the subjects I chose, I shared how satisfying, wondrous, and wonderful it had been to have been given a gift that I honored and that became the vehicle for my discovery of so many other countries and people.
I shared the experience of traveling to Jamaica to write a travel article and sitting on the beaches on Negril, of serving as an “official” writer representing the United States in Turkey on a cultural visit to that country, of attending a writer’s conference in London. The name of each city or country inspired someone in the audience to call out, “I’ve been there”; “That was where we had our honeymoon”; “I went there for vacation.” Memory and memories inspired residents to eagerly raise their hands seeking my recognition or simply to stand and claim their storytelling space. What they shared were mostly heartfelt fragments of the joy of discovering a new land, a new people, and in the process a new self. Now I sat back and listened. For listening and observing, hearing and seeing are the foundations of writ
ing. Words only get on the page because I have listened to my heart or someone else’s, and because imagination introduces me, like faith, to the power and reality of the unseen and the unknown. So, allowing the residents to tell me their stories of the borders they had crossed was part of my continuing education. I thought I had come to tell them stories, but they forged an environment where we told stories to one another. And so, this reading was no different than any other.
And then a resident recalled visiting Paris and blushed as she said, “I was there in April with someone I loved.” The room shuddered with appreciative laughter. There is much that those with Alzheimer’s “forget,” but there is so much more that they remember—love, desire, friendship, hope, dreams. I was no longer steering our craft and took another deep breath, this time one that signaled my surrender to go wherever we were headed. A frayed but beautiful tapestry was woven in the next few minutes from silence I did not rush to fill, and more fragments, rough-hewn jewels of people and places were tossed into our midst.
Then I reached for the book I had brought: my novel Long Distance Life, about sixty years in the life of a family headed by a woman who migrates from Spring Hope, North Carolina, to Washington, DC, in the 1930s as part of the great migration of African Americans from the South. The book was inspired by my mother’s life, yet was a vastly different story. I had chosen a paragraph to read, and in the quiet moments after the last word, the woman who had been in Paris with someone she loved stood up and pointed to me in what I initially thought was an accusatory stance, and shouted, “I know that woman.”
Those are the words that every writer longs to hear from a listener or a reader, “I know that story, I know that woman, that man, that child.” And we understand that then we have done our job, for what is known is known literally, or spiritually, or metaphorically and sometimes all three. And that is what the woman whose name I later learned was Gladys meant. She knew the character in the novel and would in some sense take her with her when she left the small den where we sat.
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