Portrait Of A Parent With Alzheimer's

12 hours ago
Originally published on September 28, 2020 11:49 pm

My 87-year-old mom has Alzheimer's disease in the midst of COVID-19. Right now, that means I can only see her when her Bronx nursing home connects us on Skype. Our Internet connection is sound, but mentally, she is in the grips of this disease. All she can do is just look at me for a few minutes at a time, as I try to get her to remember me.

Ramona Latty, talking to her daughter Yvonne over Skype from her nursing home at the beginning of the pandemic.
Courtesy of Yvonne Latty

"Mommy, it's me, your daughter, tu hija," I say. "Mommy, Mommy ... Mommy."

If I am lucky, she will giggle or speak in gibberish. But lately, there's mostly nothing. She has no idea who I am, what day it is, where she is or who she is. She can't speak or walk or feed herself. She spends her days in bed or in a wheelchair, sitting in the hallway across from other residents. The music group, art classes, bingo and most of the other activities that she once loved have been canceled due to COVID-19.

I have not seen her in six months. I have no idea if or when I will see her again. There are still cases of COVID-19 in her nursing home, and Gov. Andrew Cuomo won't allow visits until a nursing facility is coronavirus-free for 14 days.

And so I wait.

I love my mom, and I miss who she was. She was a beautiful Dominican immigrant who loved to dance in the kitchen. She loved Tito Puente, Celia Cruz and the merengues of Johnny Pacheco. She had a beautiful, broad smile behind always-painted lips. She smelled of sweet perfume, and sometimes in my mind I can still hear the jingle-jangle of her bracelets when she tucked me into bed at night. Her smell, and that sound, made me feel so safe when I was kid.

I miss the sound of her Spanish-accented voice; her English vocabulary was a hybrid of the two languages. I could always translate her hybrid English. I always understood her, until now.

I feel so alone in this disease, but I know I am not. There are millions of people just like me, holding on to and loving someone with this wicked form of dementia.

I am Afro-Latina, and this disease is rampant in my community. In general, Latinos are 1.5 times more likely than non-Latino Whites to develop Alzheimer's disease. (My chances of getting the disease are also slightly elevated because my mother has it.) The health issues that plague our community—high blood pressure, heart disease, diabetes and stroke—make us more vulnerable. The statistics for the African American community are even worse; they are two to three times more likely to get the disease than white folks.

Left: A photobooth image of Ramona Latty, taken shortly after her arrival in the U.S. in 1950, at the age of 19. Right: A photo of Latty taken around the time she met the man who would become her husband, Albert.
Courtesy of Yvonne Latty

But this disease is not who my mother is, even though it has taken control of her. My mom's name is Ramona Mota Latty. She was born in Santo Domingo, a city on the coast of the Dominican Republic. She grew up poor. In the eighth grade, she had to drop out of school to take care of her brother, so that her mother could work. My mom was a big dreamer who wanted more: She wanted out of Santo Domingo, where she worried she'd live a life with no work, no money and no hope.

So when she was 19, in 1950, my mom immigrated to New York. Coming to America was her dream come true. She worked in factories and went to beauty school. She met my dad, Albert, a child of Jamaican parents, at a beauty parlor in Spanish Harlem where she worked. They were married nine months later and had two daughters: me and my big sister Margie.

Ramona and Albert's wedding photo
Courtesy of Yvonne Latty

We grew up on 15 West 108th street, in a big tenement apartment with a green fire escape. I would sit there and look at all the drama unfold below me: the fights and drug sales, the drug addicts nodding off and number runners at work. The landlord abandoned our building, so the city took it over. Most winters, we barely had heat or hot water. Sometimes it would get so cold that we all had to sleep in the living room with a space heater.

My mom always said this was the happiest time of her life, because we were all together. But I struggled with it, and we butted heads. Like my mom when she was young, I wanted so much more out of life. I dreamed of escaping.

But when my sister Margie — 27 at the time — was killed in a car accident, our entire relationship changed.

My mom cried every day, she spent a lot of time at the cemetery putting flowers on Margie's grave and she prayed for her every day. She seemed so broken and it made one thing very clear to me: I really loved my mom, and I was broken too, not only because I lost Margie, but because of watching her suffer. So a few months later, on a whim, I booked us round-trip tickets to Paris, with a stop in Rome. We drank too much, ate too much and carved Margie's name everywhere we could. Our bond grew deeper; I saw how much she wanted out of life, and I so badly wanted that too —for both of us.

A lot changed in the years that followed: My father passed away, I moved to Philadelphia, and my mom became a grandmother to my daughters, Nola and Margo. My daughters loved visiting their abuelita, and I loved visiting, too. Those visits centered me, grounded me, made me feel connected to who I was and who I am, despite all the change.

For her 80th birthday, I decided we should take another big trip together —this time to the Dominican Republic, to show my daughters where my mom came from. But from the start, it was clear that something was terribly wrong with her.

Nola, Ramona and Margo stand in front of the building where Ramona was born, during a family trip to the Dominican Republic.
Courtesy of Yvonne Latty

When we exited the plane she got confused."She had some kind of idea that we had to go down some secret corner that was not where anybody else was going," my daughter Nola recalls.

When we got to the hotel, things got even more confusing. "We were just kind of expecting that Abuelita would be our resident Spanish speaker," Nola says. "Like, we'd tell her what to say in English and she'd say it in Spanish. It was her primary language. But for some reason, she turned to us like stone, and she was like, 'I do not speak Spanish. My husband is American. I do not speak Spanish.'"

My father had been dead for 15 years. And she had spoken Spanish her entire life.

When we returned home to New York, my mother's behavior continued to get even more bizarre. She began to hallucinate a boy who lived on top of her refrigerator. I discovered she gave all of her money away to mail-order psychics, who promised her riches. So I started visiting her more often. We spoke everyday, sometimes multiple times a day. I found myself thinking about her all the time, worried.

So we turned to her doctor, who suspected dementia and referred us to a neurologist. I remember the day we went to his office in the Bronx, where Black and Brown people packed the waiting room. After a series of tests, the neurologist told us dryly that she had Alzheimer's disease. He gave me some URLs, told me to Google it, and sent us on our way in less than 10 minutes. It was clear he had no time for us; he barely looked at my mom. I went home and cried.

But I was ready to fight this disease. I switched neurologists, and the new one referred her for a clinical trial to help with the hallucinations. While Latinos make up roughly 17% of the U.S. population, they make up less than 1% of participants in Alzheimer's clinical trials. (In general, Latinos make up just 7.5% of research participants funded by the National Institute of Health.) I was thrilled that she was going to be a part of one, and hopeful that it could help her.

But it was grueling. She lived in the Bronx, and I had to get her to NewYork-Presbyterian Hospital in Washington Heights every week for six weeks. She had to visit a series of doctors and have a psychological exam before the medicine was disbursed. She had to take the medicine at a certain time, but she couldn't take it on her own; Plus, she only had a part-time aide, and so I had to scramble for more help. It was exhausting—and in the end, she got the placebo version of the trial drug. After all that, the treatment hadn't done anything.

Left: Nola, Ramona and Yvonne Latty take a selfie before a Black Friday shopping trip. Right: Yvonne, Margo, Nola and Ramona Latty pose for a similar picture.
Courtesy of Yvonne Latty

Things continued to get worse. Soon, the boy above the fridge was joined by a new hallucination: ICE. I would get frantic late-night calls that a black ICE van was circling the block around her apartment, and she would beg me to help her. They were coming to deport her, she said. I tried to tell her that they couldn't take her away; she was a naturalized citizen. Finally, her aide found her wandering in the street one morning. She was no longer safe. She needed 24-hour care, and I had to place her in a nursing home.

It was the hardest thing I ever had to do in my life. My strong, beautiful mother was gone and it broke my heart.

And the heartache continues as I see her on my computer screen, unable to speak, fading away from me. My last call a few days ago went like this:

"Mommy, it's me your daughter, Yvonne," I say over and over again.

But there is no response.

My mom may have not contracted COVID-19, but the disease has taken her away from me, even further than she was before. She hasn't been able to see me or her family in person since March. She has spent way too many days alone in her room. She cannot even socialize with her friends in the nursing home, because of coronavirus restrictions. What was left of her memory is deteriorating quickly.

But I do have one thing this disease cannot take from us: our memories. They will live with me, even when she is gone, until I too am just a memory.

The audio version of this story was edited by Luis Trelles and Miguel Macias. You can listen to the original version of this piece, produced in collaboration with Black Public Media, on the Latino USA podcast.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

AILSA CHANG, HOST:

Alzheimer's, like so many other diseases, disproportionately affects Black and brown communities. African Americans are twice as likely to be diagnosed with Alzheimer's as white Americans are; Latinos - 1 1/2 times as likely. For journalist Yvonne Latty, those numbers became personal when her mother was diagnosed with Alzheimer's. Latty has been documenting her mother's illness since the start, continuing as best as possible through the coronavirus pandemic.

YVONNE LATTY: Hello.

RAMONA LATTY: (Unintelligible).

Y LATTY: So this is my life. Every week, I have a Skype call into my mom's nursing home in the Bronx.

Hi, Mommy. It's Yvonne (speaking Spanish).

Each call starts more or less the same. I reintroduce myself to my mother. I remind her that this is her daughter Yvonne speaking.

How are you feeling?

R LATTY: (Unintelligible).

Y LATTY: Alzheimer's disease has been hell, and COVID-19 has made it worse. The last time I saw her in person was in March. She knew who I was then. It was a week before the coronavirus shutdown in New York City where she lives.

R LATTY: (Speaking Spanish).

Y LATTY: The Skype calls are hard. She can barely speak a few words, and they rarely make sense. I was told to use music to reach her.

Mommy.

She loves Latin music. She loved to dance. And so I try.

(Speaking Spanish).

(SOUNDBITE OF MUSIC)

Y LATTY: My mom's name is Ramona Latty or Ramonita Mota Latty or Ramona Novelvia Mota Germosen Latty if I want to tease her.

(Speaking Spanish).

She's 87, and it's been four years now since she was diagnosed, four years of the lonely journey, which in the end I walk alone because my mom has no idea what day it is, what year it is, how old she is or where she is.

You don't know who I am? You promised me you were never going to forget me, and look at you now forgetting me. Thanks a lot.

(SOUNDBITE OF MUSIC)

Y LATTY: My mom faced dirt-poor poverty in the Dominican Republic where she was born. She joined a wave of immigration to the U.S. at 19, and she surpassed every challenge thrown her way. I'm not ashamed to say am desperate to connect with her to understand her story and make it mine and tell the world Ramona Latty, my mom, matters.

(SOUNDBITE OF MUSIC)

R LATTY: My name is Ramona Latty.

Y LATTY: That was just four years ago.

R LATTY: What's going to happen is going to happen, no matter what you do, so might as well take it easy.

Y LATTY: This was right after her diagnosis when we could still talk to each other. Alzheimer's is a brain disease. It slowly destroys your memories, your ability to think, speak, walk, talk. It's a wicked form of dementia, and it will slowly kill you. The type of Alzheimer's my mom has is not genetic, but my odds of getting the disease are slightly higher because she has it. But that has been the challenge of the disease, understanding it and holding on to Ramona Latty. I find myself thinking about where she came from, who she was, her story pre-Alzheimer's.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Immigration has brought in many people from the Caribbean area. Most of the immigrants went into the factories and found their homes in the tenements of America's growing cities.

Y LATTY: In 1950, she got a chance to come to New York City. She was 19, and she got a job in a pocketbook factory and went to beauty school.

(SOUNDBITE OF MUSIC)

Y LATTY: It's such a New York City story. She met Albert, my dad, in a beauty parlor in Spanish Harlem run by a Cuban woman who was married to a Jamaican man and as a result had Jamaican customers, which included my grandmother. My dad went to pick her up one day, saw my mom in the beauty parlor, and it was love at first sight, even though she spoke no English and he spoke no Spanish.

(SOUNDBITE OF MUSIC)

GRACE LAWRENCE: Hello?

Y LATTY: Hello. Hi, Aunt Grace. How are you?

So I wanted to start a few years into my mom's journey in New York City. And to do that, I reached out to Grace Lawrence, or Aunt Grace, who has been very close to my mom for over 60 years.

When you first met my mother, what did you think about her? Like...

LAWRENCE: Your mother loved to dance. She was so pretty and vivacious.

(SOUNDBITE OF MUSIC)

Y LATTY: And that's how I remember her, dancing with us in the kitchen to disco, salsa, merengue. Everything was hips, hips, hips, didn't matter the music.

(SOUNDBITE OF MUSIC)

Y LATTY: In mid-April, about a month after the COVID lockdown started in New York, I recruited Nola, my oldest daughter, to help me dig through some old photos I keep in a big plastic bin in our home in Philadelphia.

Nola, this is my mom's wedding picture.

NOLA: I've seen this one. It's really pretty. Wait, wait, what's this one?

Y LATTY: Nola pulls out a black-and-white photo booth image of my mom taken in the early 1950s.

That's when she first came to this country.

NOLA: She looks so good in this picture.

Y LATTY: She is looking away from the camera in a playful way. She's wearing hoop earrings and dark lipstick. The photo seems timeless.

She's working it.

NOLA: She's, like, working it. Can I have this?

Y LATTY: Yeah.

NOLA: I really like this picture. She looks like you in this.

Y LATTY: Really?

NOLA: Yeah. She looks like you.

Y LATTY: When people tell me I look like my mom, I don't believe it.

Oh, my God. What a compliment 'cause she looks so pretty (laughter).

We are different colors. She's light-skinned, and I am dark-skinned. And when I was growing up, there was this idea that the lighter skinned you are, the prettier. My mom indirectly reinforced the negativity by constantly commenting on my hair and forcing me into painful smaller shoes because she didn't want me to have big feet.

My hair didn't really go natural until you were born. And when you were born and she saw you, one of the first things she said to me was, how old does she have to be before we can straighten her hair?

The next photo we pull out of the bin is of my dad, my mom and my sister.

And this is a photo of their first Christmas with my sister Margie.

NOLA: Aw. Margie's such a smush.

(SOUNDBITE OF SKYPE RINGTONE)

Y LATTY: Mommy, do you remember? It was Margie's birthday last week. Mommy?

My big sister Margie was killed in a car accident in 1988 when she was 27. Margie and my mom were real close. She spent endless hours in the kitchen cooking with her, talking to her. They look so much alike and seemed to have so much in common. I felt close to Margie, too. She was my playmate, my friend and always looked out for me.

(SOUNDBITE OF MUSIC)

Y LATTY: A few months after Margie died, I booked my mom and me a flight to Paris. It was a magical trip. Despite her pain, my mom was alive and living her life to the fullest. And I learned so much about strength just watching her survive the unthinkable. And for the first time in my life, I saw what we had in common.

(SOUNDBITE OF MUSIC)

Y LATTY: Mommy, I was thinking about our trip. Remember the trip we took the Dominican Republic?

Twenty-four years later, I took another life-changing trip with my mom. It was 2012, her 80th birthday. And I decided to take her and my daughters to the Dominican Republic. I wanted them to experience where my mother had come from.

NOLA: Yeah, that was fun. There was a trip.

Y LATTY: For me, that trip was the first red flag that something was seriously wrong.

NOLA: We were just kind of expecting that abuelita would be, like, our resident Spanish speaker. Like, we'd tell her what to say in English, and she'd say it in Spanish. And this was like - this still makes me laugh. I know it's not funny, but it's kind of funny.

Y LATTY: It is.

NOLA: She turned to us, like, stone faced, and she was like, I do not speak Spanish. And we were like, what?

Y LATTY: I was in shock. I had no idea what my mother was doing.

(SOUNDBITE OF MUSIC)

Y LATTY: A few months after the trip to the Dominican Republic, we were joined by Aunt Grace and her husband Paul for Thanksgiving. Aunt Grace had noticed my mom had seemed off lately and confronted us both. My mother said everything was fine, and I chose to believe my mom.

LAWRENCE: Your mother did not want to get old. That's another thing. She wanted to be young. She did not want to get old.

Y LATTY: In December of 2015, I decided to go with my mom to see her doctor. He suggested cognitive testing and gave us a referral. Three months later, after a series of tests, we ended up in a neurologist packed Bronx waiting room filled with Black and brown people. When it was finally our turn, we were told my mom had Alzheimer's disease. The doctor wrote down a few URLs and told me to Google it. A life-altering, life-ending diagnosis was given to her in the same manner I was told I was nearsighted. I grabbed my mother's hand as she stared blankly at the doctor. It was clear she was just a number to him.

(SOUNDBITE OF MUSIC)

Y LATTY: Six months after getting her original diagnosis, I scramble to get her into a clinical trial. The time demands were horrific, and in the end, she got the placebo. I was wrecked. Things kept spiraling out of control until she ended up in the nursing home, the last thing I wanted to happen. And now my mom, who worked all her life, learned English, raised two daughters and gave me the tools to succeed, her life has deteriorated to this.

Mommy. Ramona. Ramonita.

R LATTY: (Unintelligible).

Y LATTY: All I have at this point are memories to get me through, like the last time she sang me happy birthday last year before she truly lost the ability to speak.

R LATTY: (Singing) Happy birthday, dear Yvonne, happy birthday to you.

Y LATTY: Yay.

I wish that she would remember me, always remember me, her daughter, her only living daughter.

Hi, Mommy. It's Yvonne (speaking Spanish).

But she doesn't remember me anymore. So in the end, COVID-19 did take my mom, not physically but it took what was left of her essence. I love her, and I choose to hold her memories until I, too, am just a memory.

CHANG: Journalist Yvonne Latty talking about her mother, Ramona Latty of the Bronx. This piece was produced in collaboration with Latino USA and Black Public Media. You can hear a longer version of this story on Latino USA's podcast. Transcript provided by NPR, Copyright NPR.