Transformation of the mind is among the most profound, if not, the most powerful change we experience in our lifetime, inside out. It brings about a reckoning of experiences, new and old, people, places and things we honor and regret, keep, or dismiss. Whether we choose to love or loath, our paths to discover new ways of living, learning, and loving await us in the shadows of the unknown.
Acclaimed, award-winning author Marita Golden takes us deep inside one family’s journey of acceptance, adjustment, and unconditional love in the face of Alzheimer’s disease, with her latest novel The Wide Circumference of Love.
I sat down with Golden for a candid conversation about Alzheimer’s disease, the African American experience with this condition, and the considerable effects Alzheimer’s assumes—not only on the recipient it claims, but also the loved ones who care for and travel through this journey with them:
BLACK ENTERPRISE: Your novel The Wide Circumference of Love is a love story and a call to awareness for Alzheimer’s. What ignited you to write this novel, and why now?
Marita Golden: Actually, it wasn’t my choice to write this book. I think, a lot of times in the creative process, we get called, as artists, to do certain work. I had been working on another novel and wasn’t making much progress that I was satisfied with. I put it aside, and essentially, this idea came to me. Once I thought of the idea of doing a novel about this, it seemed very intriguing. It seemed to be something that hadn’t been written, hadn’t been done much—with African Americans dealing with Alzheimer’s disease [in a novel form]. It’s certainly not the only novel that deals with it, but it’s one of few.
The novel is essentially, as you say, a love story. One of the reasons the [love] is important, is because, when we talk about Alzheimer’s, we talk a lot about the impact of the disease on those who actually have it. But Alzheimer’s is a sort of ‘devilish’ disease, whereas, the person who has the disease dies twice. They die first, in terms of their family being able to recognize them, and then they die physically. But, also, the responsibilities that the disease imposes on family members is enormous. It’s very unique. It’s very different from a disease like cancer, because people with Alzheimer’s are often cared for by their loved ones. Even when you have someone who has Alzheimer’s in an assisted care or memory care unit, the family still has to advocate and monitor the care. That, in itself, is a story that hasn’t been told so much. I wanted to tell a story of the impact of the disease, not only on Gregory, who develops it, but also on his wife and children as they respond to it.
BE: How important is it to have education and informational resources for Alzheimer’s throughout the African American community?
Golden: One of the things that’s going to have to happen as a society, as we respond to Alzheimer’s disease, is that the needs—emotional, psychological, and financial—of caregivers will have to become much more recognized and supported. This is because there’s not going to be enough nursing homes for all of us who are going to have dementia.
BE: The two main characters in your novel, Gregory Tate, who has the disease, and his wife, Diane Tate, had been married for more than three decades. In that time, they’ve lived through a variety of conditions, including his battle with cancer, diabetes, and now Alzheimer’s. In your opinion, why is it so difficult for longstanding African American partnerships, like this one of so many years, for them to talk about this kind of transition, even to additional immediate family members?
Golden: In the African American community, we are twice as likely to get the disorder. They don’t know exactly why. There is genetic research that has discovered that genes manifest one way in whites, another way among blacks, but researchers still don’t think that explains why we’re twice as likely. Now, we are at risk for it. They know this because we have higher rates of obesity, diabetes, and even the stress of racism is a factor in the development of Alzheimer’s disease. When you read about Alzheimer’s disease, they acknowledge that.
In our community, there is enormous shame—and silence—about the disease. We tend to be a community that looks at what are often the signs of dementia as just somebody getting old, “Oh well, that’s just Aunt Sal,” or, “That’s just Uncle Ben acting like that.” When people begin to manifest serious signs of decline, we hesitate to talk about it, because we may think it’s mental illness. We may think it’s just getting old. There is shame, and as a community, we’re just not open about it. For instance, when you compare the HIV crisis, there was similar shame around that as well. Here, you have the same thing.
BE: Isn’t that the case with many illnesses, such as depression or bipolar disorder? These are often considered myths within the African American community, yet they are not myths.
Golden: Exactly—that’s a good point. The problem is that, the longer we take to acknowledge and talk about it, the worse it becomes. Typically, by the time an African American person is diagnosed with Alzheimer’s, it’s often almost too late to do anything. They are diagnosed late in the progress of the disease. Whites tend to take their loved ones in earlier for assessments.
Now, some of that is economic. For example, to acquire an accurate diagnosis of someone who has Alzheimer’s requires a CAT scan. The average CAT scan cost $700. Many African Americans do not have the kind of health insurance that’s going to pay for that. Therefore, if you don’t have a really good health plan, you’re not going to be motivated to go to the doctor to get what you truly need. Furthermore, we underestimate the extent to which both segregation and medical policy have either been indifferent to black people or malevolent.
One of things I talk about in my article is that only 3% of African Americans are enrolled in clinical trials to find the cure for Alzheimer’s. Even though we’re twice as likely to get the disease, only 3% of us are in the trials to find the cure. Whites may often think that blacks are so poor and injudicious, that they don’t know that this is what they should do. What often happens is that African American doctors are not in the network of information to know about these types of clinical trials.
It’s been proven that black people will participate in all kinds of medical studies, including Alzheimer’s—despite Tuskegee, despite the unauthorized research of Henrietta Lacks. Despite all of that, if you ask African Americans to give blood, they will say, “Yes.” However, they’re not asked. Nobody goes into our churches, our beauty parlors, our sororities and our fraternities, where we are. We’re less likely to go to Washington Hospital Center and look on the wall to see that there’s an Alzheimer’s study. That’s not how you contact us. The studies have proven that, if you do that kind of targeted outreach, you’ll get black people to participate. They’re just beginning to use that. Consequently, we’re not in the clinical trials. Thus, there is shame. There is silence. There is a lack of education.
BE: What types of responses have you received on this subject from several educated African Americans?
Golden: When I talk to people like us, who are educated, and say that we’re twice as likely to get Alzheimer’s, the response is often, “Oh, I didn’t know that.”
One of the things that is greatly needed is, just as there was a mass educational campaign to inform people about smoking, lung cancer, drunk driving, and so forth, there needs to be a mass educational campaign developed that informs African Americans that they are twice as likely to get this disease. The face of Alzheimer’s in most people’s minds is white, even though we are proportionately at a greater chance of getting it.
BE: Which brings me back to the focus of the family in your novel–they are an astute African American family.
Golden: Yes. This is an upper-class family that is in denial. He [Gregory] doesn’t want to acknowledge his illness, because if he does, he will lose his firm. He will not be in charge. Everything that he has built his life on will disappear.
In my article, I did an interview with a woman who works with African Americans against Alzheimer’s. She goes into the black communities to talk with key informers about the disease. She stated that one day she was talking with a group of black ministers about Alzheimer’s, and how they needed to talk to their congregations. She continued to say that she looked around the room at the faces of these men, and she could see that many of them were shaken—some of them were crying. She believes that many of them either knew someone who was showing signs of it, or may have been showing signs of it themselves, which has caused a fear of losing authority and power.
BE: Is that pride, perhaps? Many men understand the necessity to get annual check-ups for the detection of prostate cancer, yet they refuse to go to the doctor.
Golden: There was a big campaign around prostate cancer about five or six years ago, where athletes were going out and speaking about it. Ultimately, it made a difference in changing black men’s attitudes. Now, there is a lot of information on the internet about Alzheimer’s. They are looking for African Americans to be in the trials. If you’re showing signs, they can get you in a trial to help develop a drug that would have an impact.
BE: Your novel has a tremendous emotional impact on the reader. I now understand, in its entirety, the title of the book The Wide Circumference of Love. I was particularly absorbed by the family dynamic and the complexity of each relationship and how they differed –Sean [son], Lauren [daughter], and Diane [wife]–in their connection to Gregory and his illness.
Golden: I wanted to make the reader feel something very deeply. The point is that life goes on. It was important to tell a story in which a caregiver could honor her responsibility to the one she loved, but go on with her life.
BE: In your professional opinion, why do you believe genetic and environmental factors may work to increase the cause of Alzheimer’s disease, particularly in African Americans?
Golden: They know that there’s an Alzheimer’s gene that’s different in African Americans. The stress of racism and our overall poor health is a result of the legacy of slavery and segregation. Generations of poor education is one of the things they find. When people attend substandard schools, their brains do not develop the ability to be sharp early on in life. The brain is like a muscle that needs to be exercised. If a large number of us come from families, where we have generations of poor nutrition and poor access to schools, it shows up in our genes. One of the things about Alzheimer’s is that you want to keep learning things, doing new things, meeting new people, so that the brain can keep working. Alzheimer’s isn’t developed at age 50. You are predisposed to Alzheimer’s and dementia, possibly through a family connection, or also if you establish poor eating habits early on or lack of exercise—those things will reinforce the genetic connection.
There are so many unknowns. For example, we could both be 85 years-old and deceased, and when they open our brains, they could look the same and our bodies could look the same. But, one brain could have it, and the other brain could not. One could not have the genetic predisposition in the family, but they won’t know why one brain developed the disease and the other did not.
The economic impact will be enormous. Right now, the economic impact is a quarter trillion dollars. By 2050, it will be one trillion dollars, including Medicaid, Medicare, research, and caregiving. One of the things I’m doing with this new book and as an advocate is using it as a platform to organize events in the community, where we can attract a lot of people to have the conversation about Alzheimer’s disease.
BE: What is the most brutally honest reality Alzheimer’s has on adult children who are to become caregivers?
Golden: This book changed my attitude about aging. I saw so many families where grown children were missing in action in the face of parents who had dementia or Alzheimer’s, but couldn’t handle it. Who didn’t handle it. I decided that I had to talk with my grown children about the possibilities—about what we wanted and didn’t want. It took me through a kind of deep examination of my own feelings about life and death and the meaning of each.
On the other hand, I saw numerous cases where families came together and worked as a unit to support the loved one who had it. I came out of four years of research feeling unafraid of the disease, rather, I felt full of life—living, breathing, and thriving to be better.
BE: What is one of the most severe effects Alzheimer’s has on the recipient?
Golden: There’s a gentleman I’m profiling in my article in The Washington Post. I went to visit his wife in the care unit where she was in Silver Spring, MD. This is a woman who was a professor of education at Bowie State University, and within three years of diagnosis, she could no longer speak. Her spine has also collapsed. Sometimes, it happens very fast; others move more slowly.
What happens is that your body forgets how to work. You forget that you want to eat. You forget things of all sorts. The gentleman expressed that, through caring for his wife, he has learned how very blessed he is. Every Saturday or Sunday, he will call someone in his neighborhood or church that is sick, shut-in, or just needs a word of comfort. He says that his wife’s disease changed him, and that giving and hearing are what empowers him to continue doing what he does for her.
Throughout this exchange, Marita Golden shared with me a variety of solemn stories of families she’s met, talked to in the field, and facilities she’s visited and observed. Her newly discovered passion on the subject of Alzheimer’s is bringing attention to communities everywhere. Some of the caregivers she’s talked with say they’ve been able to have conversations with their loved ones that they’ve never had before.
Marita adds, “There are cases that are quite dramatic, even violent. It can be difficult. It’s a mixed picture. It is what it is. You have to make what you can of it. You have to learn to love people in another way. In some cases, there’s a part of you, spiritually, that opens up that may have been closed before.”
The Wide Circumference of Love is a novel and testament to what is possible when faced with uncertainty, adversity and the capacity for love.
This piece was written by Rochelle Soetan, a writer, poet, global activist, workshop leader, mental health advocate and author of the inspirational book and international blog Tuesday Morning Love.