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“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?”
That’s how local writer Marita Golden describes first coming to grips with Alzheimer’s disease, a reckoning that inspired a novel and now an anthology of memoir and short fiction.
The anthology, Us Against Alzheimer’s: Stories of Family, Love, and Faith, showcases the cost and complexity of the disease–and the resilience of families making their way through it.
What are the moments of tragedy–and of grace–that come in the midst of dementia? And what resources and support can caregivers of people with dementia lean on here in the Washington region?
Golden and contributor Cathy Alter join Kojo to discuss.
Produced by Margaret Barthel
KOJO NNAMDIWelcome back. Close to six million Americans have Alzheimer's Disease. A little over 250,000 of them live in D.C., Maryland and Virginia, where they're cared for by more than three-quarters of a million caregivers. Alzheimer's and other dementias disproportionately affect African Americans, who are twice as likely to develop the disease as whites, and Hispanics who are one-and-a-half time as likely. Those are the numbers. Then there are the stories, stories of love, loss, resilience and remembering in the face of dementia.
KOJO NNAMDIWe'll focus on those today with Marita Golden. She is the editor of the new anthology "Us Against Alzheimer's: Stories of Family, Love and Faith." She is the author of 60 novels and nonfiction books and the president emeritus of the Zora Neale Hurston-Richard Wright Foundation. Marita, good to see you again.
MARITA GOLDENGood to see you again, Kojo.
NNAMDIAlso joining us in studio is Cathy Alter. She's a local author and journalist and a contributor to "Us Against Alzheimer's." Cathy Alter, thank you for joining us.
CATHY ALTERI'm excited to be here.
NNAMDIMarita, how did you come to this project? What drew you to Alzheimer's as the subject for an anthology?
GOLDENWell, I had been researching my novel, "The Wide Circumference of Love." And after I finished the novel and wrote an article for the Washington Post, I kept remembering how I was buoyed and inspired by many of the stories that caregivers and family members who told me about how caring for someone with Alzheimer's had activated a deep well of love, loyalty and devotion. And I really felt, as a storyteller, that this was a story that you very rarely heard about. And I wanted to bring those stories forth into the world.
NNAMDIGlad you mentioned the diversity, because one of the remarkable things about this book is how diverse the stories are. You're really giving us a window into how Alzheimer's affects people and their families from all walks of life, in all kinds of different situations. What are a few of the narratives people can look forward to reading in this book?
GOLDENWell, one of the things I’m most proud of is that it's a multicultural anthology. We have a piece from writers from India, Haiti, Trinidad and the Dominican Republic. So, we have fiction. The anthology has nonfiction. They're actually stories that are humorous, as well as stories that are deeply poignant. There's an excerpt from "On Pluto," which is a book written by Greg O'Brien, a journalist who is actually living with Alzheimer's, and has been living with Alzheimer's for the last nine years. And so they're deeply moving stories of caring for a spouse, caring for family, but also resilience. And, as I say, there are moments of humor, as well.
NNAMDICathy, your contribution to the anthology, called "My Mother's Mirror," appears in the “I Won't Forget You” section of the book. Which, by the way, before I get to that, why is the book organized into sections? What are they, and what do they mean to you?
ALTERWell, when I was looking at the contributions, they sort of created a pattern, a tapestry of meanings about the experience of caring for someone with Alzheimer's or living with Alzheimer's. And “Turning Points” deals with the various turning points for those caring for people with Alzheimer's, turning points where you realize what this disease is going to mean for your parent, what it's going to mean for you. “I Won't Forget You” has pieces where people really honor the person with Alzheimer's and acknowledge the fact that they will never be forgotten. So, there are different sections that honor the journey.
NNAMDIAnd, as I said, Cathy Alter, your piece is in the “I Won't Forget You” section of the book. What are you remembering in this essay?
ALTERI'm remembering a mother who is no longer the person that's in the wheelchair. And I'm remembering how she was a mother to me now that I'm a mother, and what it's like to be a mother without a mother at all the significant times in your life. And the essay started with a leather jacket that I saw and didn't think I deserved, you know. Because who was I to dress up, when all I had was, you know, early bird specials in the stroller brigade? And not having my mother around to urge me to get it or to, you know, tell me to put on my lipstick and just get over it.
ALTERAnd it was a way to sort of deal with that, me becoming a new mother as I was losing my mother. And it seemed easier to center it around the leather jacket than, you know, get into some of the more heartbreaking and heart-wrenching things that I was seeing.
NNAMDINevertheless paint a picture of your mom for us. What was your relationship like with her?
ALTERI thought she was a movie star when I was little. She was six-feet tall, beautiful, had long, straight dark hair like Cher, and was so stylish. So, I looked up to her as an icon in everything. I mean, people can't see me, but I look nothing like my mother. (laugh) I look like my father. She just had it together, you know. She owned a clothing store, our town's, you know, hippest, hottest place to go.
NNAMDIShe was so striking, that people were intimidated by her.
ALTERYep. Did you know her? (laugh) Yeah, she was. My friends were terrified of her, but she just wanted to, you know, be one of the girls. But she just was a six-foot tall, red-lipped, you know, all-in-black, you know, kind of superstar. My friends were really afraid of her, which, you know, made her very (laugh) sad and confused. She didn't understand why.
NNAMDIOne of the more heartbreaking parts of your essay is how you describe your mother's physical transformation in the midst of her dementia. Would you read a little bit of that for us?
ALTERSure. Although she is still alive, at 72, she suffers from a progressive form of dementia that has robbed her of speech and, even more painful for me to witness, the ability to dress herself. For over 40 years, as owner of our town's hippest fashion boutique, she told everyone within earshot how to dress, her daughter included. No longer in her trademark Love That Red nail polish and black Armani pantsuit, she sits locked in her head and strapped in a wheelchair, most days in sweatpants, and with hair that's braided off to the side, which may be a convenience for her aids, but surely is doing no favors for my mother. If she could return to her right frame of mind for even an instant, she would scream bloody murder, and then reach for her lipstick.
ALTERSo, how am I to keep up appearances? I am essentially without a mother, and all the advice, solicited and un, this title implies. For the past four years, I haven't had her to remind me to fluff my hair, which, when I don't, makes me look like I have, her term, cradle cap. Nor is she available to tell me not to stoop. You'll get a hunchback. Not to wear pale lipstick. You'll look like a cadaver. And not to wear boxy shoes. You'll look like you have club feet.
NNAMDIThat is Cathy Alter, reading from her contribution to the anthology "Us Against Alzheimer's: Stories of Family, Love and Faith." We also have the editor of the anthology in studio with us, Marita Golden. Cathy, in some ways, the process of preserving something in writing is an interesting counterpoint to the forgetting that happens in Alzheimer's Disease and other dementias. Has it been difficult to write about your mother's illness?
ALTERYes, it has. And, you know, I'm still trying to process and grapple with what happened. And I find, you know, and most writers will tell you this, you process by writing. But I kind of am writing around the edges of it. I can do it a little bit at a time, but, you know, it is really hard. And I told Marita earlier, it was hard for me to read this book. It's even hard to read other people's essays. It just brings it back. It's, you know, a scab that you just keep picking at and healing and picking at and healing. So, you know, I'm not done writing about my mother.
NNAMDIOn to the phones, here is Brittany in northern Virginia. Brittany, you're on the air. Go ahead, please.
BRITTANYHi. Great to be here, Kojo.
BRITTANYSo, I was just calling to tell you a little bit about my story. I actually, growing up, my parents -- I live with my parents, and my grandmother actually had Alzheimer's. And from the time -- my entire childhood, all I knew was that she had Alzheimer's. I never knew her without Alzheimer's. And it was around eight years old when she came to live with us. And she died about four years later, but for most of those years that she had it, she lived with us. And it was very, I don't know -- I know it was difficult for my mother to take care of her, definitely with having twins in the house, of me and my brother. But, like, watching my mother take care of her, for my grandmother to slowly die like that, it was a huge challenge, even as a child, to watch.
NNAMDIOkay. Thank you very much for your call. Marita, you nevertheless encountered people who, even though it was a challenge, were able to draw on their fondest memories of the friend or relative to whom they were giving care, and didn't necessarily dwell on the saddest aspects of it.
GOLDENRight. One of the -- the people who buoyed me and inspired me, particularly when I was doing my research, were family members, one, who had figured out how to engage in self-care, physically and emotionally. So that they were taking care of their bodies, taking care of their spirits. And once they did that, they seemed to have more emotional resources that allowed them to infuse the experience of caregiving with a sense of the deeper meaning of this, what they were going through, this transition that they were helping their loved one through. So, they defined it a little more broadly.
NNAMDIYou did not originally intend to include fiction in this anthology, but then you did. Why do you think fiction is suited to unearthing truths about Alzheimer's Disease?
GOLDENWell, I think one of the beautiful things about fiction is that, at its essence, it breaks down bridges between people. I also think that fiction is a repository of the fantastic, the imaginative, the unspeakable, the unthinkable. And there's so much about Alzheimer's Disease that is just that. So, I think that fiction is the perfect genre for it.
NNAMDIOn now to Billy in Pasadena, Maryland. Billy, you're on the air. Go ahead, please.
BILLYHello and thank you for letting me speak. My family was directly affected by Alzheimer's. My mother-in-law passed away two years ago due to complications because of the disease. But, you know, some aspects of it early on actually brought our family closer together, in many ways. You know, we began visiting regularly. She lived in northern Virginia. It's about an hour trip, but we would go down every weekend and provide care, take her out, along with my father-in-law.
BILLYAnd, you know, people often think about the complications with chronological memory. She would become a little bit displaced in time often thinking that she was at a younger age than she was. And, in fact, sometimes she would ask me if I was her father. You know, she could recognize that still there was a family relationship, but she couldn't quite place it. And in that process, too, with being unstuck in time, you know, some things could be enjoyable. You could share a story and she would delight in it, you know, as a child would. And then 10 minutes later she'd ask a question about that. You could tell the same story, and she would be equally delighted.
BILLYUnfortunately sometimes she could get into a negative loop, you know, talking about relatives that were passed away. And so we would work to try to bring her back to a positive loop, and, you know, just be who she wanted us to be, instead of thinking about that she couldn't remember who we actually were.
NNAMDIOkay. That helps a lot. Thank you very much, Billy. I do have to say that my other lived with me for the last five years of her life when she was battling Alzheimer's. In those days, Marita and I lived on the same block and I was raising sons as a single parent at the time. And among us we were able to cope, but I couldn't do it with the help of the Alzheimer's Association of Greater Washington, which provided support groups that I could go to and see people who are experiencing the same thing as I was.
NNAMDICathy, as your mother's health declined, you were becoming a mother yourself. You were pregnant when your mother received her diagnosis, and your son was a toddler at her funeral. That sounds like an emotional rollercoaster. What helped you cope?
ALTERJust exhaustion from being a new mother. I mean, you can't really brood or think what if when you have a baby, you know. No one is more in the moment than a toddler. So, I was so focused on raising my little boy and going home as much as I could, so I felt very divided. I think, you know, part of me was overjoyed and part of me was devastated. And I just tried to keep -- because I was in D.C., and my dad and mom were in Connecticut -- I felt very divided. My happiness was back in D.C.
ALTERI'd go to Connecticut and I'd have to be there for my father, you know, who needed my support. And, actually, I related to what Billy just said about, you know, feeling closer and forging an even tighter relationship, which is what I did with my father. But, you know, it's really one day at a time. That was the only way I could handle it.
NNAMDIMarita, one of your own essays in the book, “Be Here Now,” about your visits to a former neighbor May who has Alzheimer's. Would you read a little bit from that, please?
GOLDENThis is a section where we were in the midst of a conversation. I was daddy's favorite, the favorite. He told me that, she says proudly. Telling me where she's from, she's telling me who she is. Coherence and memory and confidence return as May tells me about her family's farm in Wilson, North Carolina. Hating the farm, but loving her family, reading the books brought at Christmastime by her mother's sister, Aunt Sue, from Newark, New Jersey.
GOLDENI knew I didn't want to keep working on the farm. None of us did. Daddy and mama didn't even want that for us. And I got into my head that I was going to be a secretary. And she became one, working at the Pentagon for 40 years, until her retirement. She'd come to Washington and taken the civil service test, the successful passing of which in the 1950s and '60s was nearly hallowed entry into the middle class for generations of African American strivers like May and Jimmy. If you had a good government job, it was felt back then, you were set for life.
GOLDENWhy do I feel so close, so connected, just by the recitation of her past? I sit with an 80-year-old woman, who is unsure of who I am, trying to discover who she is. In those moments, I feel the deepest tenderness for May, and for myself. And after years of being her neighbor, this is the most intimate conversation May and I have ever had.
NNAMDIMarita Golden, reading from "Us Against Alzheimer's." One of the things that's striking about that excerpt is that May had the visceral memories of her own history. There's a perception that Alzheimer's and other dementias erase memories. Obviously, it's a little more complicated than that, isn't it?
GOLDENYeah, very. What happens is short-term memory is often gone, but long term memory -- so I know a lot of times people will suggest that if you're visiting someone with Alzheimer's, to take a photo of them as a younger person, or at a different point in their life. And that will spark memory, and will also be a way to have conversation with them. And when I showed her a picture of myself at six years old in Greensboro, North Carolina, that sparked her memories of her childhood.
NNAMDIYour essay in this book generally showcased not just the tragedy of dementia -- your essay, Cathy, that is -- but also moments of grace and humor that pop up along the way. Do you remember any of those moments of grace, in particular? We only have about a minute left.
ALTERThrough my mother's decline, I think watching my father -- you know, I always thought that my mother would teach me about marriage and what a good marriage was. But watching my father care for my mother, he was the one who has taught me what a good marriage is. His devotion and loyalty and tenderness toward, you know, his wife of over 50 years. That was really my moment of grace, watching that.
NNAMDIAnd Marita, in the time we have left, where can people hear you talk more about this book? Tell us a little bit about the organization Us Against Alzheimer's, because Megan tweets: I look forward to listening and finding resources to help my aunt, who has Alzheimer's, and my mother who cares for her. I'm in Metro D.C. but they're about three hours away. What can a medium-distance family do to be helpful?
GOLDENWell, Us Against Alzheimer's is a great organization that particularly works with people of color, African Americans, women, Latinos to make sure that they're part of the cure, as well as the conversation. So, you can go to their website and get all kinds of resources. The Alzheimer's Association, here in D.C., there's the D.C. Office on Aging, the D.C. Department of Aging and Community Living. They do a lot of great work supporting families. And Sibley Memorial Hospital is a sponsor of a program tonight at Shiloh Baptist Church Family Life Center, where I will be reading with several of the other contributors at 6:30.
NNAMDII'm afraid that's all the time we have. Marita Golden, always a pleasure.
NNAMDICathy Alter, thank you for joining us.
NNAMDIThis conversation about the new anthology "Us Against Alzheimer's” was produced by Margaret Barthel. Our discussion about sexual harassment at the VA was produced by Victoria Chamberlin. Coming up tomorrow, we'll hear about how the new cap on refugees entering the country could impact those who are already here. And we'll have the second installment of our Virginia election series. Tom Sherwood will join me to ask our panel about how the gun control debate is playing out on the campaign trail in Virginia. That all starts tomorrow, at noon. Until then, thank you for listening. I'm Kojo Nnamdi.
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