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Essays

Fairy Tales And My Father’s Parkinson’s

When I was a kid, my dad made collages of Rapunzel, Rumplestiltskin, and Hansel and Gretel for my bedroom wall. I still think of them as I confront his Parkinson's.

Growing up, my dad’s hands were a source of magic Painting, calligraphy, photography, carpentry—they were endlessly capable of producing beauty. This wonder was summed up for me by the three framed collages he made when I was a baby and hung in my childhood bedroom: bits of paper, painstakingly torn and lovingly formed into vibrant, colorful illustrations of Grimm’s fairy tales. They’ve been lost to time, but I still think of them. Not just as a representation of his extraordinary artistic talent… but as a record of who he was before his Parkinson’s, as a creative mind and as my father.

The first collage was of Hansel and Gretel, the children approaching the witch’s gingerbread house. It was my favorite because it was the most colorful and had all the candy. But it was also the scariest, because it had a witch. As a child, I would focus on the candy for as long as I could, until my eyes inevitably crept to the witch. Then, I would feel distinctly uneasy. She was scary, lurking there, waiting. A malevolent presence just biding her time.

The witch never moved, but we did. My mom and dad divorced when I was 15 and I saw him every other weekend. It wasn’t until much later, then, that the malevolent presence made itself known.

I was in my mid-30s when I got a birthday card that was addressed to me in an unfamiliar handwriting. I turned it over to check the return address. It was my dad’s. Something gnawed at me, a scary witch feeling. The handwriting was awkward, forced-looking; this wasn’t my father’s penmanship, which was always unusually graceful and elegant. Soon after, he told me that he’d been diagnosed with Parkinson’s. The tremors were starting to affect his fine motor coordination. It was a small side effect for most people, but my dad spoke through his hands.

That small change in his handwriting spoke louder about what was haunting him than words ever could. He was always a man of extraordinary artistic ability, whether it was penmanship or cake decorating. But now, this dexterity was being taken from him, locked away.

My father and I dancing at my wedding.

He was always a man of extraordinary artistic ability, whether it was penmanship or cake decorating. But now, this dexterity was being taken from him, locked away.

The second collage on my wall growing up was of Rapunzel. She was in the tower, isolated and alone—but the distance kept Rapunzel safe from the witch. At first, just like Rapunzel was removed from her witch, I felt removed from my dad’s disease. We were separated by half of the country; so many miles away, I could pretend that it didn’t exist. When we talked on the phone, he sounded the same; if we just didn’t talk about it, it was almost like the illness was a bad dream.

But of course, just like the witch at the base of Rapunzel’s tower, Parkinson’s was still there, lurking. I could see it in the increasingly labored and enlarged lettering on my dad’s envelopes. And, over time, I saw that the Parkinson’s witch had begun her ascent, slowly creeping up the tower of my dad’s mind. I learned he’d had to quit his job and go on disability. He lost his health insurance. What was I supposed to do? How was I supposed to help? With three time zones between us, I felt like I was playing a game of Telephone—badly: half-informed, half aware. I hung up the phone after our conversations and fumed for hours, frustrated that I had so little to offer, angry at the disease and my own inability to help.

The third collage was Rumplestiltskin—the story of the crafty little man who extorted what was most precious, who could only be undone by the guessing of his real name. Names are powerful. After my dad told me he had Parkinson’s, I spent months stewing in impotent fury before I put a name to what I was really feeling: fear.

I was scared of losing my dad—in death, yes, but also in increments, as he was slowly reduced from the man I’d known. I was scared of what his diagnosis meant for me and my own children, who are now 9 and 13. The hereditary nature of the disease means that this could be our future as well and, while remarkable research is being done, there is still no cure. More immediately, I was scared that my father wouldn’t be able to get the assistance he needed and that I wouldn’t be able to do anything to change that.

Names are powerful. After my dad told me he had Parkinson’s, I spent months stewing in impotent fury before I put a name to what I was really feeling: fear.

I can’t change his Parkinson’s or its effects. Like the falling apart decay of the collages,  my father has lost many of his artistic abilities: he’s had to give up much of his detailed work, and now he contents himself with painting in large, Mondrian-like blocks of color. But he still treasures art. A year ago,  he came to visit; he wanted to go to museums. It was my first time pushing him in a wheelchair. He tired quickly, but before the illness caught up with him, he spent a few hours discussing art with his grandsons. The joy radiated from him, sharing this love with my boys.

 

Some of my father’s post-Parkinson’s art.

The art in his soul is still there. It hasn’t been lost; its expression has just changed. His painting now is different, but it’s still clearly his, like everything from my fairy tale collages to the decorations on my birthday cakes. And in that sympathy for light and feeling, I realize that Parkinson’s has not destroyed him as an artist… nor has it changed who he is as a person.

I miss what my father once could do with his hands; I know he does as well. But I am proud of what he persists in doing still, refusing to be undone by witches and secret names that tell us to be afraid.

Creative Commons photo by Janyn Berame

Roundups

8 Books That Can Help Kids & Teens Understand Dementia

When a loved one has Alzheimer's or other forms of dementia, it can be hard to explain what's happening to your kids. But storytelling can help.

Witnessing the mental decline of an elderly relative can be upsetting and confusing for anyone—but especially for children and teens. Natural questions a child might ask: Do they know who I am? Do they still love me? Why can’t they remember? Will this happen to me or my parents? What will happen next?

Thankfully, there are books that can help you answer these questions. Whether your child is in preschool or a teenager, authors have addressed dementia at a variety of age-appropriate levels. If you’re struggling to explain dementia to your kids, here’s some books that can help.

Ages 3-7: Newspaper Hats by Phil Cummings 

When Georgie and her dad visit Grandpa, Grandpa cannot remember Georgie… but he does remember how to make paper hats. The two bond over creating hats for other residents in his home. These paper hats become a metaphor for dementia that children can understand when Georgie’s hat blows away and she runs after it, similar to what’s happening to Grandpa’s memories. Paper Hats is an excellent book that teaches young children that just because someone might have problems remembering, it doesn’t mean that they aren’t Grandma or Grandpa anymore. [Buy it on Amazon]

Ages 4-8: Forget Me Not by Nancy Van Laan

When Grandma starts forgetting names and losing track of where she parked her car, Julie and her family become worried. But when they find Grandma wandering the neighborhood, they need to make an important decision: for her own safety, Grandma must be moved from her home to an assisted living community. Julia is upset by this change, but eventually recognizes that Grandma is both happier and safer in her new place. In Forget Me Not, Van Laan delicately explores the stage of moving an elderly relative into a safer environment, a topic that may be hard for children to understand and accept. [Buy it on Amazon]

Ages 5-8: What’s Happening To Grandpa? by Maria Shriver

Kate loves to listen to Grandpa’s stories, but when he starts repeating the same story over and over again, Kate becomes confused. Then Grandpa forgets Kate’s name. After her mother explains about Alzheimer’s, Kate decides she wants to help Grandpa. Together, they create a photo album of old pictures, so Grandpa can capture the stories and memories he still has. The book provides simple, clear facts about Alzheimer’s so children can understand what happens to their loved ones as the disease progresses. [Buy it on Amazon]

Ages 5-10: Weeds in Nana’s Garden by Kathryn Harrison

When a young girl discovers weeds in Nana’s garden, she learns that her grandmother is suffering from Alzheimer’s, which tangles up her brain just like weeds do to flowers. As Nana declines, the weeds grow thicker, until the young girl learns to accept her new role in the family, and becomes the garden’s caregiver. Based on her own personal experience with her mother’s dementia and her daughter’s observation was that it was like weeds, the end of Harrison’s book provides a series of questions and answers that can help children better understand the disease. [Buy it on Amazon]

Ages 8-12: The Brilliant Fall of Gianna Z. by Kate Messner

Middle schooler Gianna Z. is in a race against time. If she doesn’t finish her science project, she might lose her spot at the cross-country sectionals – and she only has one week! But in addition to being distracted by mean girls, cute boys, an arch-nemesis trying to steal her spot on the team, and a father who embarasses her by driving her to school in the family hears, her grandma Nonna has started showing signs of forgetfulness. The Brilliant Fall of Gianna Z. shows that as sad as a relative’s dementia can be, life still goes on. [Buy on Amazon]

Age 12 and Up: Curveball: The Year I Lost My Grip By Jordan Sonnenblick

After an injury benches 8th grader Peter Friedman from his place as the star pitcher on his baseball team, he turns to his grandfather, a famous photographer, for guidance. Yet even as he teaches him photography, Peter Friedman can see something wrong…  something his own parents refuse to believe is real. This relatable story for young adults not only shows the early warning signs for dementia, it shows the different ways in which relatives can react when a loved one is sick. [Buy on Amazon]

Age on 12: Remember This by S.T. Underdahl

Summer will be great – Lucy Kellogg just knows it. Her beloved grandmother, Nana Lucy, is coming for a visit. But when Nana arrives, she isn’t the same: the poised woman who always told her “remember this: I love you,” has been diagnosed with Alzheimer’s and is now forgetting things. As an Amazon reviewer notes, “Bits of sound medical advice are skillfully threaded through the fibers of this beautiful, touching story, and allow the reader to come a little closer to understanding the seriousness of this tragic condition.” More than that, Remember This shows that just because someone has Alzheimer’s doesn’t mean they stop loving you, or being worthy of love. [Buy on Amazon]

For Teenagers: The Story of Forgetting: A Novel by Stefan Merrill Block

After his mom is diagnosed with a rare form of early-onset Alzheimer’s, teenager Seth Waller goes on a quest to locate his mother’s lost relatives and learn the truth about her genetic history. He discovers Abel Haggard, an elderly man with a hunchback who lives at his family’s formet farm, and learns about Isidora, a love story set in a fantasy world that connects both Abel and his mother. Combining myth, science and storytelling, Block provides readers with an abundance of medical information regarding Alzheimer’s, creating a great combination for teens who would like a deeper, more scientific understanding of dementia. [Buy on Amazon]

Creative Commons photo by Jason Lander.

Q&As

How iPods, iTunes And Spotify Can Help Treat Dementia

Founded in 2006, Music and Memory is helping prove that music can be a powerful healing tool, especially for the elderly.

In 2006, Dan Cohen heard a story on the radio about how everyone now had iPods. But he didn’t believe it was true, especially for older people. So, he Googled “iPods and nursing homes” and couldn’t find one facility that provided residents with personal music players. A social worker by training, it made Cohen think: what if residents of nursing homes had access to music customized to their specific tastes?

It was an experiment worth trying, thought Cohen, so that year, he began working with a nursing home in Long Island, NY, bringing in his laptop and a few iPods. He created playlists of 150 to 200 songs, individually personalized for residents with music from their youth. When they listened to their custom playlists, the results exceeded Cohen’s wildest expectations. He couldn’t believe how much music brought the residents to life.

According to Cohen, most residents in nursing homes spend their time idle; 50 percent never receive a visitor, while 40 percent face some sort of cognitive decline. That’s why music is so important to those in nursing homes: it’s a powerful medium that can unlock their memories, connecting elderly patients both to the past and those around them. Music also reduces anxiety, lifts spirits, and has been shown to help with physical and verbal behaviors, as well as increase communication and social interaction.

Michael Cohen of Music & Memory distributing headphones.

After seeing how well his experiment went, Cohen started the nonprofit Music & Memory to use personalized music to improve the quality of life and find renewed meaning and connection for those suffering from dementia, Alzheimer’s disease, and other cognitive and physical challenges. Today, Music & Memory’s program has been adopted in 5,000 health care sites globally, including the United States, Canada, Australia, Israel, Europe, the Caribbean, and South Africa. One of the org’s videos, featuring an elderly man named Henry hearing a personalized playlist for the first time, has been viewed almost 3 million times on YouTube.

Cohen’s vision is for access to personalized music to be part of standard care practices, not just in long-term care facilities, but other healthcare settings as well. By giving power over their playlists to the elderly, Music & Memory aims to empower them in other ways. “We only listen to music we want when we want and for how long we want. We want to give that same ability to our elders and others in nursing homes and assisted living facilities,” he says.

Cohen spoke with Folks about how they create playlists, how music can help with dementia, and why everyone should have control of their own personal radio dial.

This interview has been edited and condensed for clarity.

How does music unlock emotions and memories for people with dementia or Alzheimer’s disease?

Our senses of smell and sight light up a small part of the brain, but music lights up more parts than any other stimulus. When you really love a song, you just respond. Even with dementia, our emotional systems are still very much intact. Cognition may fail or short-term memory might be degraded, but music can still serve as a backdoor to the deepest parts of our brains, because it goes right to our emotional systems.

What benefits have you seen from providing personalized music to older adults?

Music is integrally tied to speech. If a guy mumbles, people assume that’s just the way it is. When he listens to his music, 25 minutes later, you can understand everything he says. I asked a speech therapist and they said it happens all the time. It helps them articulate words. They say, “So-and-so just talked to me and hasn’t said a word in nine months.”

It turns out that music also follows the same pathways as pain signals. When music is played, it diminishes the perception of pain.

It turns out that music also follows the same pathways as pain signals. When music is played, it diminishes the perception of pain. When you’re listening to your music, you don’t feel the arthritis in your wrist. In Wisconsin, they’re using music with people with advanced dementia who’ve forgotten how to swallow and may choke. When they give people their music for 10 minutes before eating, they somehow remember how to orchestrate a swallow. It helps with rehabilitation too. If an older person falls and breaks a hip, a physical therapist may be concerned that they won’t remember how to do the exercise or the repetitions because of dementia. When you give them their own music, it helps them remember. It helps reduce the use of antipsychotic medication, too.

Music helps rekindle a sense of self, and faith in their capability. It engages the brain in a positive way.

How do you create the playlists?

If people can articulate their preferences—I love Frank Sinatra. I love Barbara Streisand. I love Mozart and old hymns—we use that information to create customized playlists and then hone the lists over time.

Unfortunately, many people we work with are not able to articulate or communicate their preference, so we talk to family members. Wepose questions to unearth what they might like: “Did they play an instrument or sing in choir? Did they play music at home? Do they have any old records? What was the song the band played at their wedding or high school prom?” It helps us learn what they may like and elicit ideas.

Every facility has a laptop with an iTunes library. Everyone gets their own personalized playlist. Everyone has their own device and headphones.

So it’s a customized playlist for each person? There isn’t a general “Alzheimer’s playlist”?

Yes. They’re customized to their specific preferences and have songs that hold personal meaning.

Would this benefit people outside of nursing homes and long-term care facilities?

One of Music & Memory’s many patients, experiencing their personalized playlist.

Even if someone is home and healthy, they should have their own playlist. When my father-in-law was home and healthy, his iPod was set up with 200 songs. After he had a heart attack, his music helped relax him in the hospital. When he went to a nursing home, his music was with him all the way through.

Unfortunately, thanks to the advancement in technology, elders are losing touch with their music. They don’t know how to operate devices or download music. While they can still articulate their preferences, it’s important to help them make a playlist. We have a free guide on our website that anyone can download to help them set up a personalized playlist for a family member.

 

Did you expect that customized playlists would have such an impact?

I’m surprised. When the Henry video went viral in 2008, the Wisconsin Department of Health Services called and said they wanted to try our program. We started an 18-month study with 1,500 residents in 100 nursing homes across the state and researchers from the University of Wisconsin tracked it.  Within six months, I got a call that they were getting such positive feedback that the Secretary of State didn’t want to wait until the end of the study. They doubled down and rolled it out to another 1,500 residents and made it state policy as part of their dementia plan. Our program is now running in all 50 days and it’s public policy in 24 states.

Are there any downsides to this?

There are no real downsides. Someone might react negatively to a song. It might have a bad connection for someone so be on the lookout and remove that song from the playlist. It’s the kind of thing where the worst case scenario is: if we can’t find music that holds personal meaning, it doesn’t work. But the upside is amazing.

Essays

Two Traumatized Brains, Aligned

As I recover from a stroke, I am better able to understand and relate to my mother's Parkinson's.

My mother’s neurological conditions lurked menacingly in the background for years, growing stronger until they were impossible to ignore. By contrast, my brain was rocked by a sudden and drastic explosion that came out of nowhere. Yet through these different routes, my mother and I found ourselves selves sharing a similar experience: one that was frightening and frustrating in equal measure.

In my mother’s case, it starts with lights in her brain starting to dim, ever so slowly. First came the tremors. Slight enough almost to ignore, except we’d seen my grandfather, who had Parkinson’s, exhibit those same tremors before he died, nearly three decades before. We tried to remain in blissful denial for as long as possible, but for my mother, she soon started living the cruelest sort of déjà vu. Soon, she was mixing up her words and calling us by the wrong names, until eventually, an official diagnosis came around that confirmed what we already knew: Parkinson’s Disease, along with Lewy Body Dementia.

Of course, I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke, and her challenges soon became a lot more relatable to me.

Like most strokes, mine exhibited itself both physically and mentally. The first sign: While I didn’t have tremors exactly, I was unable to control my hand movements, I lost control of my right arm and hand. At the hospital, I couldn’t sign my admission forms, or even hold a pen. My entire right arm seemed to have a mind of its own, flopping around in a way that made me feel like a seal with a broken flipper.

I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke.

Comparatively, the cognitive issues weren’t as evident right away, but ultimately, they were worse. The stress and confusion I experience in the early hours of the stroke masked the mental impact, at least at first. It wasn’t until later, after the urgent tasks of getting myself care had been completed, that I tried to focus, and realized I couldn’t. By the time an MRI showed that my stroke had occurred in an area of the brain associated with reading, writing and language comprehension, I already knew: I’d found myself constantly typing the wrong words, and felt that frustrating sensation of having a word on the tip of my tongue with alarming frequency.

For someone who writes for a living, and reads with passion, it was a major blow. Just trying to get through normal routine daily tasks—calling to make a doctor’s appointment or writing a casual email to a friend—was like running an obstacle course lined with forgotten words and foggy thoughts. The pages of my favorite books became minefields where words and sentences I’d read countless times before lost all meaning, and stopped me in my tracks. It was like something was suddenly blocking the route between my eyes and my brain.

The author and her mother on the day of her wedding.

One day, it dawned on me: This must be what it’s like for my mom.

It wasn’t quite exactly the same, of course. My mother’s diseases were progressive, and her symptoms were only going to get worse. In my case, the future was a big question mark. As my doctors kept reminding me, the brain is a complex and mysterious entity. Each stroke is a bit different, and so too is its aftermath. There’s no surefire way to predict which of my deficits will be permanent, and to what extent. Like many stroke patients, I did see spurts of improvement as I recovered, but it’s impossible to know when you have reached the point where it’s the best it’s going to get. Still, I do have a constant series of tiny victories, and moments when I discover that something has finally become easier. But my feelings of joy in these moments is now tempered by the realization that my mother will probably never enjoy those same kinds of all-important wins.

That’s when I contemplate the difference in our journeys. While many of our current challenges may be similar, we are like the proverbial ships passing in the night. Briefly in a similar spot right now, but arriving from different origins and destined to head off into separate paths.

I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience.

Our courses may only have converged for a short time, but I consider this a rare and valuable opportunity. I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience. This greater understanding of her reality has allowed me to have a deeper understanding of all of the many challenges she must overcome on a daily basis. In turn, this has motived me to be more patient and compassionate, and to look for ways that I can offer support that might make her life just a little bit easier.

I know that I will probably never to be able to fully grasp what it’s like to be in my mother’s position. However, I am grateful for this experience that has given me even just a little more appreciation into the courage and strength she must summon every day just to do simple things many of us take for granted. I now realize how much of a warrior she really is. And the same goes for everyone else who lives with neurological challenges and serious health issues.

I certainly won’t go so far as to say I’m glad I had a stroke. But I think there’s a positive silver lining to any experience that allows us to have greater compassion towards and understanding of those around us, and the struggles they may be facing in silence. I hope we can all look for opportunities to connect with those who need our support. Often, just knowing that someone is listening and can understanding their struggles can make a huge difference.

For me, this little glimpse into my mom’s world—however fleeting it may be—has truly changed my life. And I hope this shared connection and the effect it has had on me has also improved hers, in some small way.

Essays

The Memory Queen

When Alzheimer's took my grandfather's memory, I started writing a fairy tale to make sense of our loss. But dementia cannot be defeated like a fairy tale queen.

Down the street from my grandparents’ condo in Hawaii, there used to be a nightclub with a cardboard-looking mural in front of it, depicting a woman snorkeling.

My family and I used to joke that the woman was my grandma. There was something about their similar stern, narrowed eyes, head of dark hair, and flawless light skin, despite the Oahu heat, that made the snorkeler’s face familiar. I had never seen my grandma swimming, and I had never so much as seen my grandpa in a pair of swimming trunks. But that mural was still a significant landmark, probably because trips to my grandparents’ place at that very young age usually meant that we would take a swim in their pool.

If we went to visit on a Sunday, we would shower upstairs in my grandparents’ apartment before going to our almost weekly family dinners at the restaurant of my grandparents’ choosing. Half-naked and ducking my mother’s attempts to approach me with a hairdryer, I would admire family pictures around the condo: official cruise photos in their glossy paper frames, posed family portraits, and school pictures of my sisters and me. There were almost always snacks around, which my grandparents offered constantly, despite our pending dinner, and my grandpa would often encourage me to change the television channel in the living room to something I would rather watch, even when a football game was on.

[My grandfather] loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.

Then we would drive over to a Chinese restaurant or Japanese diner or the occasional steakhouse. With my grandparents forming the center of gravity, we would all pack into a large booth together, leaning in as they told us stories about their travels. They had a whole routine down with my grandma often enthusiastically beginning a story and my grandpa nodding in agreement beside her: a transatlantic cruise, a tour of Europe, a visit to Japan to see the cherry blossoms. One anecdote, in particular, shattered my preteen heart into a million pieces: one time, on a return flight to Hawaii, they were bumped to first-class, and found themselves sitting next to Justin Timberlake, Lance Bass, and the other members of NYSNC. As they regaled us with stories, waiters would stop by, asking for gambling tips my grandparents had picked up on their latest trip to Vegas.

Together, the two were the life of the party: my grandmother, always joking, commanding the room, a masterful raconteur; and my grandpa, her perfect complement, beaming by her side, giggling after her every punchline as though it was the first time he had ever heard it. My grandpa especially seemed to love these dinners, joyfully taking in the company of our family. He loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.


When I finished sixth grade, my family moved from Hawaii to the suburbs of Georgia, but Oahu was always my home. In the summer months, we would return to the house where I grew up, complete with its shag carpet and ’50s flair, and resume our Hawaii lives: taking summer classes, hanging out at the mall with friends, and–most importantly of all–resuming family dinners.

Even when I left for college, I would still come back to visit whenever I could, staying with my grandparents in their condo. During the days, I would shadow my grandparents as they went about their days: watching The Price is Right with my grandfather, or watching my grandma make travel arrangements on her iPad.

In hindsight, I wonder if the midnight encounter might have been one of the first warning signs.

I was in my early 20s, and my grandparents usually let me do my own thing. One night, sneaking back into the house 2am after an evening out clubbing with my friends, I heard a rustling behind me as I took my heels off in the dark. It was my grandpa. Illuminated solely by the light leaking down the hall, he had appeared out of nowhere. My heart jumped guiltily in my chest as we studied one another. Then, I saw the bowl of Frosted Flakes in his hand.

“Want some?” he asked.

My grandparents are cool as shit, I thought to myself at the time. But in hindsight, I wonder if the midnight encounter might have been one of the first warning signs.


Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

We’d find him pacing around the apartment, moving things from one room to the next. Or we’d find him standing at the kitchen sink, washing a single spoon over and over again, which may not have even been dirty when he picked it up.

When I came to visit, Grandpa would hug me, but I could tell he didn’t know my name, or even what our relationship was.

For the most part, he was agreeable. He could pass as normal in large social situations, laughing when everyone else did, and fawning over my grandma. But if you watched him, you could see the subtle clues. He wouldn’t eat so much as push food around his plate, or offer it to others, claiming he was full despite having never taken a bite.

An old family friend said that my grandpa’s agreeable nature in the face of Alzheimer’s was a testament to what a good person he was before he was diagnosed. I appreciate the sentiment, but it always filled me with more questions. Who was he now? And what did that mean about the time we spent together? Did it mean anything at all?

Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

One summer night, my grandma gathered the relatives for dinner at a hotpot restaurant while I was in town. It felt just like it did when I was a kid. Everyone was talking loudly, telling stories about their travels. People asked me how New York was, where I’d been living for a few years, while we all cooked raw vegetables and meat slice in boiling pots of broth.

That was when my grandpa, who had been to this place before, picked up an uncooked noodle, took a bite of it, and frowned. “I don’t think I like the food here,” he said. I smiled reassuringly and showed him how to cook his noodle in the broth; no one else had noticed.

Afterwards, I couldn’t help but keep a close eye on him. I noticed my grandpa was looking through the faces of the people at the table, out of our private room. I tried to follow his gaze, but I couldn’t; I simply couldn’t understand what he was looking at.

Being so physically close to him but unable to connect was heartbreaking. I wondered if my grandpa felt that same sadness. Maybe in some ways, this is harder for us than it is for him, I thought to myself. If he can’t even remember, maybe he doesn’t understand what he’s lost.


When I got back to New York, I started writing to sort out my feelings.

The piece that started to take shape was a play. Not specifically about my grandpa, but a grandpa who suffered memory loss. It wasn’t Alzheimer’s, though. His memories were being stolen from him. There was an evil queen named Dementia, siphoning memories from David, the grandpa in the play who shared the same name as my own. And there was Mia, an estranged seven-year-old granddaughter, hell-bent on protecting David by collecting items of power from around her grandparents’ house to finally defeat the queen.

She wondered what it was like to lose all of your memories. She wanted to know how painful it would be

Mia asked all the questions I wanted to ask. She wondered what it was like to lose all of your memories. She wanted to know how painful it would be. Most of all, she wanted to know how to connect with someone she loved when he may not even know who she was.


As my trips to Hawaii became less frequent, my time there became more precious. I started spending less time with friends, and instead focused on my grandparents.

Suddenly, little moments felt very important. One afternoon, my grandma took us out for shave ice. My grandpa had a big sweet tooth, and we took our plastic cups back to the van and ate them in the car. We rolled down the windows, and my grandpa reclined his seat. I sat there, feeling the warm breeze on my face, as my grandpa finished his frosted rainbow cup, then closed his eyes for a short nap. Everyone was happy, and silent, and I couldn’t help but smile between bites.

But as much as I enjoyed these moments, I also felt an obligation to memorialize them. I tried to memorize every line of that moment–the incline of my grandpa’s seat, the expression on my grandma’s face, the exact patterns in each cup’s rainbow ice–so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s. There was an added layer of consciousness in our time, an awareness that every memory must be stockpiled for a time when I would need them for comfort.

I tried to memorize every line of that moment… so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s.

One day, my grandpa asked me if we could go for a swim together in the pool downstairs. In all our time together, he had never once shown any interest in swimming, but this time, he changed into his trunks and followed me out the door. I felt so goddamn grateful as I watched him float and bob around the water. At this point in his battle against Alzheimer’s, he sometimes wouldn’t even know who I was, yet here we were, sharing a rare moment together.

My next visit, my grandpa overheard my grandma mention I was on my way down to the pool. He perked up.

“We’ll go for a swim?” he asked, making little freestyle motions with his hands.

“Let her go, David,” my grandma said, mentioning it was time for a nap.

I went downstairs by myself, assuming he would sleep and forget the whole exchange. When I returned upstairs, however, he smiled at me.

“Swim?” he asked.

I wanted to throw up. Of all the things he remembered of our time together, that swim we had taken was one of them, and I had just shrugged off an opportunity to create another special moment we could have shared. I’d never get that opportunity back; we never ended up going swimming together again.


My play had a professional reading at the New Ohio Theatre in New York in 2013.

It was produced and directed by a coworker at the bookstore where I worked, and he assembled a top-notch cast for the occasion. I had a whole slew of professional actors at my disposal, one of which was on Broadway in Newsies, but one of my favorite people involved was the child actress playing Mia, who seemed fearless. My mom flew in for the big reading. She had never seen any of my plays, so it was a special occasion. I also had about 30 friends and colleagues in the audience, hearing my most personal work read out loud.

When the show was over, I received a lot of congratulations from the cast, crew, and audience. My mom really enjoyed seeing the process of a performance getting up on its feet. Some of my friends admitted to tearing up during the show.

But in the days that followed, I found myself getting a lot of feedback from colleagues. One note, in particular, came up consistently: Is this a kid’s show, or an adult’s show?

Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

I was surprised. Despite the fairy tale plot, I’d never seen the play as being for kids. I saw Mia’s journey as an idealistic take on a disease that makes idealism impossible. It represented my hope that things maybe could get better, that there is something–anything–productive to do in the face of Alzheimer’s senseless loss.

The climax of the play occurs when Mia has collected all the items needed to defeat Queen Dementia. By recalling her favorite memories of her grandfather with these totems in hand, she is able to vanquish the Queen, and reclaim the key to the box where Dementia has hidden all of David’s memories. It rests on the family mantle, but when Mia reaches for it, David enters the room, startling it out of her hands to break open on the floor.

For a fleeting moment after the box breaks, David looks at Mia. There’s a flicker of recognition. But then Mia’s mom and Grandma come running into the room. The recognition is gone. Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

Reality came crashing down with the locked box. All Mia’s hard work had culminated in a moment of clarity, but it had opened like a wound–pulsing and bright–and then healed over in the blink of an eye.


The news of my grandpa’s passing came quickly.

My grandparents were supposed to meet my parents in Vegas, but right before the trip, my grandpa was suddenly admitted into a hospice, By that weekend, he was gone. Spending the weekend with my boyfriend’s family for a barbecue, I remember crying outside a New Jersey Chili’s upon hearing the news. At the barbecue itself, I separated myself from the crowds, walked down the street to the boardwalk by the house, and wailed out my grief into the reeds lining the water, hugging myself as I did to keep myself together.

I had no illusions about how my grandpa’s life would end. I had been preparing myself for years for that call, stocking up my vault of memories. But as I gasped for air in the night, I realized that there had been part of me still believed the fairytale: that it was possible to vanquish Queen Dementia, and that I would be able to see Grandpa one more time, as he had been, if just for a minute.


I flew out for the funeral. With my work schedule and flights, I ended up in Hawaii for about 36 hours.

My mom and sisters and I stayed at an AirBnB within a few minutes of my grandparent’s condo which was so cramped, I had trouble sleeping. In the dark, I thought about that nightclub mural of my ‘Grandma’ snorkeling, and how the last time I saw it, they’d physically torn her out of it; only the ocean and fishes remained around the snorkeler-shaped gap. She was gone, but the absence of her was palpable. My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss. And I was the sea, feeling the gaps left by the things time had stolen from me.

At the funeral, I was given the task of handing out programs. On the outside was a photo of him smiling next to a giant spiral-cut, fried potato. It was a perfect choice–an image of the joy my grandpa got from the simplest things.

My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss.

The funeral itself was short but sweet. They played Taps on a bugle along with a military flag presentation, which I knew my grandpa would have loved. It reminded me of how, when my grandparents visited me in New York, he would grunt in appreciation during the pauses between lyrics in Broadway shows.

After the funeral, we all went to a Chinese restaurant for dim sum. There were faces there I hadn’t seen since my childhood.

When we walked in, my grandma was giving the waiters instructions, rearranging tables to make sure everyone was accommodated. Amidst the pinging of teacups, clinking of silverware, and whirring of Lazy Susans, people shared stories about my grandpa, and talked about things about him they’d miss.

But even there, life was moving on. At one point, during a talk about the latest movie releases, my Grandma perked up. “What’s Sausage Party?” she asked.

The table erupted in laughter.

I suddenly felt very thankful. We all missed my grandpa, and that loss will never go away. But the family will live on. Here, with all these people who loved and remembered him, something opened up, bright and pulsing. For a moment, even without him there, I was home again.

Creative Commons photo from Debs on Flickr.

Histories

Rosa Parks and the Hard Cost of Activism

Civil rights activist Rosa Parks' seemingly simple decision to keep her seat on the bus took on a life of its own. But it also largely overtook her life... and her health.

Happy Martin Luther King Jr. Day! As we pause to acknowledge the great men and women who have pursued civil rights reform in this country, let us not also forget that they often did so while simultaneously managing health conditions. This story from our archives, originally published on July 13, 2017, shows how chronic illness and civil rights intersected in the life of one of Reverend King’s personal heroes, Rosa Parks.


When she refused to give up her seat on a segregated bus in Montgomery, Alabama on December 1st, 1955, Rosa Parks became a civil rights icon. But it wasn’t without cost. The personal aftermath of Parks’ courageous one-woman sit-in was a bumpy ride, though, a road marked by potholes related to the young leader’s physical and financial health.

Parks’ refusal to give up her seat kicked off the yearlong Montgomery Bus Boycott, one of the first major milestones of the Civil Rights Movement. Other activists had refused to give into the racist seating system before Parks, then the secretary of the Montgomery chapter of the National Association for the Advancement of Colored People (NAACP). But it was the mild-mannered department store clerk whose case ultimately led to the desegregation of the Alabama city’s public transit system. Parks later stated that to stay focused on her purpose, she often thought of Emmett Till, the African American teenager from Mississippi who had been lynched only months prior for whistling at a white woman.

This  undated photo shows Rosa Parks riding on the Montgomery Area Transit System bus. Parks refused to give up her seat on a Montgomery bus on Dec. 1, 1955, and ignited the boycott that led to a federal court ruling against segregation in public transportation.

Activism is rarely simple or straightforward. For Parks, though she was a longtime activist, her pivotal place in history was somewhat accidental. She has said repeatedly that she did not mean to get arrested that particular day, only that she was worn down by one too many indignities of existing in public space and simply didn’t immediately move to her assigned place.

Several days after she was arrested for refusing to give up her seat, Parks went to trial. That day, the Women’s Political Council–a local activist organization–distributed 35,000 leaflets encouraging other African Americans to stay off public transit. Activists coordinated carpool systems; an alternative public transportation system–one that was by and for African Americans–sprang up overnight.

Naturally, Parks volunteered as a dispatcher, urging riders and drivers:“Remember how long some of us had to wait when the buses passed us without stopping in the morning and evening.” Soon, tens of thousands of Montgomery residents–not just African Americans–took to walking everywhere as a show of support.

Parks’ seemingly simple decision to keep her seat on the bus had taken on a life of its own. But it also largely overtook her life… and her health.

In her award-winning book, The Rebellious Life of Mrs. Rosa Parks, historian Jeanne Theoharis writes that during the bus boycotts, Parks developed ulcers. Her physician put her on a milk diet, which was very expensive; later that year, she underwent some gynecological-related surgery, adding to her mounting medical bills. Her health issues were exacerbated by burning the candle at both ends: letters that Parks wrote home detailed how much she enjoyed traveling to give speeches and radio interviews, even as it wore her out.

Rosa Parks waits to board a bus at the end of her boycott. Photo: Don Cravens

Eight months after the  bus boycotts ended, Parks, her husband, Raymond, and her mother, Leona, remained unable to find work. Harassed constantly by hate calls, the family chose to move north to Detroit, but soon, Rosa left her family and temporarily  moved to Virginia to take a job she’d been offered as a hostess at an inn at a historically black college. Parks wrote to her mother that she felt she needed to stay in Virginia to make money “but I can never tell when I will get sick or be upset about something.”

At the end of 1959, a brutal year for the family, ulcers put Parks in the hospital. The hospital bill was over $500, the same year that the family’s income tax returns show a total annual income of $661. Like today, where crowdfunding sites like Indiegogo are all too often expected to pick up the slack of a broken insurance system, Parks’ friends and family came together to raise money on the family’s behalf. Even so, the financial burden of Parks’ illnesses remained heavy.

Finally, Parks–long nearly unemployable due to her notoriety–was able to find a well-paying job. In 1965, after volunteering for his campaign, Parks secured a position with newly elected Michigan congressman John Conyers, a job that paid several thousand dollars and provided health insurance. Parks stayed on as an assistant to congressman Conyers, who is currently the longest-serving member of the U.S. House of Representatives, until her retirement more than 20 years later.

Even with stable work, she continued to struggle. In the late 1970s, Parks experienced more setbacks when she fell on an icy sidewalk and broke two bones that subsequently caused her serious chronic pain. Her husband, Raymond, died in 1977, and Parks cared for her aging mother, Leona, who eventually succumbed to cancer and geriatric dementia in 1979.

President Obama pays tribute to Parks.

Despite needing the income for medical bills and basic needs, Parks continued to donate the money she earned from speaking fees. A longtime supporter of political prisoners and an anti-apartheid activist, she helped greet South African president Nelson Mandela upon his release from prison in 1990. Her activism continued unabated, with awards and honors too numerous to name, even as she eventually succumbed to dementia. Scholarships in her name for Detroit-area youth have totaled over a million dollars, and her name has been placed on too many roadways, public buildings and public transit-related structures to count.

Rosa Parks was 92 when she passed away in October, 2005. More than a decade later, her legacy of standing for desegregation and prisoner rights continues to loom large in an era when Black Lives Matter activists put their bodies on the line, staging die-ins and filling city streets during marches to protest police shootings of young, often unarmed black men and women like Trayvon Martin, Michael Brown, and Eric Garner. Fighting for basic human rights has never been a simple or straightforward endeavor, and Parks’ legacy is enduring proof that struggles for equality are not uncomplicated acts without great if necessary personal sacrifice. Parks often worked harder than her body seemed to want to allow, but as she once told a fellow activist, “Freedom fighters never retire.”

Essays

No Silver Lining

My husband's slow descent into delirium had no upside, but it failed to diminish my love for him, or the effect he'd had on my life.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.


I’ve never believed that every cloud has a silver lining or as the German philosopher Nietzsche said, “That which does not kill us, makes us stronger.”

My husband’s debilitating dementia had no silver lining, and it made neither of us stronger. John’s decline was marked by suicide threats, crying jags, and psychotic episodes that landed him in the geriatric-psych unit for weeks. Once he even managed to hurl himself out of a reclining wheelchair.  He knew he was losing his mind, and he objected.

By the time we first started dating thirty-six years before, I’d had my share of relationship failures, including the breakup of my first marriage, which I felt so guilty about that I split myself into two people: the one who wanted to stay, and the one who wanted to leave. The two argued incessantly, and I was always trying to make a quick getaway in the hope that I could escape one of them and find some peace of mind. The one who wanted to leave turned out to be my better half, and ultimately we both left my husband.

John and Pamela, shortly after they met.

In contrast, John, an NYU professor seventeen years my senior, evoked the image of a steady ship in calm waters with his tall person, confident stride, and ever-present briefcase.

After we’d been dating for a few months, John left for a fly-fishing trip out west. I missed him terribly.  Then late one night, the telephone rang in my apartment. It was John, calling from Last Chance, Idaho.

“I’ve been thinking about you,” he said. “I’d like to spend more time with you.  In fact”—there was a pause on the other end of the line—“I’d like to spend the rest of my life with you.”

I was speechless, terrified that this was too good to be true.  I panicked that I would ruin our relationship by panicking, and he would get sick of my panic and leave me.  This created more panic.

All the same, that August we got married and moved into a 5th floor Chelsea walk-up.  The panic moved in with me.

One day, shortly after we got married, John found me sitting on the apartment stairs crying. He was stumped. What the heck was I doing sitting there crying about nothing?

Eventually it occurred to me that John wasn’t going to get scared off by my panic attacks.  He loved me whether I panicked or not.

“You’re playing to an empty house,” I told myself. “Why don’t you just relax and enjoy the relationship?”

“Why don’t you just relax and enjoy the relationship?” That was some of the best advice I ever got.

That was some of the best advice I ever got.

From the beginning, John expressed unshakable confidence in my dream of becoming a writer.  Not only did he think I would be a writer, he believed I already was one, even before I demonstrated the talent or tenacity.  That someone believed I could actually accomplish anything was a novelty for a girl who had grown up with a conspicuous lack of abilities or even intelligence, at least that anyone took note of.

I spent most of my time as a child obsessing about the unsettling fact that I had been born, which meant that one day I would die.  When my parents took me to see a movie about the Titanic, I became alarmed by how swiftly and haphazardly death could come.  One minute you’re singing and dancing, and the next you’re drowning in the North Atlantic.

Kindergarten came as a rude interruption to my existential preoccupations, and I almost flunked out.  My mom said I was dumb, like her which was sad because she was more confused than dumb.  My teachers said I needed to adjust, which never happened, and my first husband, whom I married at nineteen, said I was an idiot to think I could ever be a writer.

A picture of John and Pamela, after John won the NYU Distinguished Teacher’s Award.

With all my worries about getting shipwrecked in the icy Atlantic, bad grades, and a husband who assaulted my intellect on a daily basis, life was a challenge.

Until John.  John not only believed in my dream of becoming a writer, he believed in me as a person, in my innate goodness.  If faith is the evidence of things not seen, then he had more than confidence in me – he had faith. And because of his faith, I became the person he believed me to be (almost) and the writer he believed I would become.

Then John had a stroke. Now, I had something concrete to panic about.

My efforts to keep John alive and safe felt like trying to outrun a truck that was careening downhill. The stroke was followed by multiple falls, fractures, seizures, and surgeries. Eventually he could no longer walk.  The cost of hiring round-the-clock nurses ($18,000 a month) was out of reach, so I placed John in a memory care facility close by, and visited him every day.  I brushed his teeth, played Bach and Jessye Norman, exercised his legs, and reminisced about the past.  When our daughter, Annelise, talked to him about college, his face lit up, if only fleetingly.  But our separation made me feel like I was leaving this man who had always stood by me, or that we were leaving – or losing ­–each other.

“I couldn’t find you,” he’d cry, when I visited him. “I didn’t know where you were.  I didn’t know who I was.”

Now he was the one panicking.

For John, I existed in a dream: an apparition of memory, love, and self, miraculously appearing out of nowhere, then vanishing just as mysteriously.

Sometimes I’d hold his hand. “You’re magnificent,” I’d say.  And then he’d have more than himself for just that moment; he’d have us.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp. He was a brilliant man, and some of the pieces glittered.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp.

Late one night the telephone startled me awake.  It was a nurse on John’s floor.

“John’s screaming and we can’t calm him down,” she said.  “Will you try talking to him?”

A few minutes later the nurse handed John the phone.

“I’m not even French and they’re trying to kill me!” he yelled.

Oh my God, I thought, he’s in the French Revolution, which wasn’t surprising since he taught 18th Century literature and history.

I did not succeed in calming him down that night, or bringing him into any other era, including the present.

Ultimately, everything faded from his mind: his passion for teaching, his joy in his students’ success, people and places from the past.  But when all that had vanished, he still knew me and our daughter.  The details of our lives – where we lived and what filled our days – eluded him, but he knew who we were and what we were to him.

Still I was not prepared to call that a silver lining. A titanium lining, at best. Titanium, I knew, blended strength and practicality with a high melting point: just like me, since I’ve been known to blow a fuse now and then.

“Are we married?” I asked him one day, after yet another stint in a geriatric-psych hospital.  It had been two years since he’d moved to the memory facility, and he was fading fast.

John gazed at me fiercely, in spite of the haze of dementia and truckloads of tranquilizers and anti-psychotics he was on.

“Absolutely,” he said.

Three days later, he was dead.

His death brought new questions and dilemmas.  How could such a tremendous (though diminished) personality simply vanish?  Could he still see me somehow? Would we meet again, on a trout stream one summer evening: he casting a fly, me reading on a grassy bank nearby?

Our daughter Annelise rests her head on John’s lap, shortly before he died.

A friend told me her late husband returned as a thrush one spring morning, and trilled a song to her from the treetops.  Was the bird singing outside my window, John?
At John’s burial, our friend Gary, who knew John years before I had, said a few words.

“When I met John he was a kind and serious man, but emotionally heavy,” he began.

Old friends who had gathered around the gravesite nodded knowingly.

“In the periodic table there are transitional metals like silver, gold, ribidium–heavy metals,” Gary went on.  “When John met Pammy, his soul lightened.  Nitrogen, hydrogen, helium – these are the elements he inherited when he fell in love.”

The word “helium” brought laughter and recognition. But no Nietzschean strength. I wondered when I would recover.

Yet, with time, John’s confidence in me, his very essence, has became a part of me, of who I am and how I make my way through the world.  Gradually I have grown more serious, more solid.

I still panic about nothing, but every once in a while I catch a glint of those transitional metals Gary spoke of at the gravesite that day: gold, rubidium, and, yes, silver.

Q&As

This Retired Pharma Exec Is Trying To Cure Alzheimer’s In The Black Community

After his mother got Alzheimer's, Willie Deese used his money and connections to confront diversity issues within the pharmaceutical industry head on.

A study of more than 270,000 individuals, published last year, suggested that 38 percent of blacks aged 65 are projected to develop Alzheimer’s. And as the overall U.S. population grows older, this neurological illness mainly affecting aging people is expected to become a bigger, more costly problem for the medical community, patients and their families. It hits blacks harder than any race of people: African-Americans are twice as likely as whites to develop Alzheimer’s.

Willie Deese.

Willie Deese, a retired executive vice president for prescription drug-maker Merck, knows how hard Alzheimer’s can hit black families. His 88-year-old mother has the incurable brain disease. That’s why a good chunk of the $1 million that  Deese donated in 2016 to his historically black alma mater, North Carolina A&T State University, went to its groundbreaking center for researching Alzheimer’s in African Americans. He’s hoping that his money and industry connections can help finally find a cure for dementia, as well as explore the role that race can have in getting patients proper treatment.

These days, from the Chapel Hill home he shares with his wife, the native North Carolinian spends his retirement serving on corporate boards and advising African Americans who are interested in pharmaceutical industry careers. And he stays busy talking about the issues surrounding clinical trials and who enrolls in them.  He continues to push drug makers and everyday people, alike, to do their part to ensure that prescription drugs and other medical interventions generally are tested on both genders and every race.

Folks sat down with Deese to talk about his mother, his career, and the ways that pharmaceutical companies can be more inclusive.

When did you first suspect that your mother was ill?

About seven years ago, I noticed that she was repeating herself and forgetting things, like how to get to the room where she was staying while visiting us. I said to my wife, “Something is just not right.”

Since then, my mother’s Alzheimer’s has progressed. For almost everyone who has this disease, it progresses.

Today, she lives in a facility that takes very good care of Alzheimer’s patients. If she had her druthers, she would be in her home. But she can’t live there safely without round-the-clock care.

Since your mother has gotten sicker, how has your mom-son relationship changed?

My mom and dad both had close relationships with all nine of us children. We grew up on a farm with a lot of love, a lot of laughter, a lot of caring … in very ordinary ways.

When I was working for Merck, I’d talk to my mother two or three times a week. If she needed something done, input or advice, as she aged, she tended to count on me and my older sister–the oldest of us and the one who has assumed responsibility for most of my mother’s care–as the people she called first. It was just kind of understood that, if she needed something, she could count on me.

How do you deal with your mother’s declining health? How does it make you feel?

Sad.

It’s tough to watch. I’m 62. When you’ve known your mom all of your life and remember her at her best, all of this is difficult. She used to have a very, very sharp and engaged mind.

When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s. In some way, shape or form, it catches everyone. And it is not a positive experience. So, the family also goes through these tough stages. Denial, resentment, anger.

When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s.

For me, the harshest moments are watching my mother mistreat my sister, who has a master’s degree in social work and is the person who has been closest to my mother and provided the most support. My mother can use some harsh language, at times. She can be totally disrespectful in her interactions with my sister. My sister personalizes some of that. It hurts. But my sister knows these are not things that my mother can control. She says, “This is my mother. I have to take care of her.”

I’ve received significantly less of that acute misbehavior from my mother. But I do understand and feel the hurt. Despite those behaviors, which many Alzheimer’s patients exhibit, you have to continue to love them and care for them and give them more time and attention.

How do you account for the difference in how your mother now treats you and how she treats your sister?

Mrs. Deese, Willie’s mother, who has Alzheimer’s.

From a clinical perspective, I cannot tell you why that is. I can tell you–from what I know about this disease–that the differences here are normal. They may grow out of the fact that patients spend more time with primary caregivers than others. I have no more insight than that.

How does Alzheimer’s affect your mother at this point?

There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self. She is having a conversation, remembering what she said five minutes ago. She can string thoughts together. And all of this gives you the momentary, false feeling that she is going to come out of this. That’s not going to happen.

The repeating, forgetting, confusing things, all of that comes back. With each passing day, those things worsen.

There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self.

What was your mother’s  initial response to being diagnosed with Alzheimer’s?

Largely, denial. Most people with Alzheimer’s will go through a long period of denial and almost anger.

My mother had always been very mentally sharp and keenly aware of her surroundings. Even now, she knows that something’s not right with her mind. And that awareness—that things have changed, that things are different from what they used to be—also is a symptom of the disease.

She’s lucky to be in a specialized facility, yes?

That’s right. A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines. Particularly in the African American community … many people with the disease often are alone, fending for themselves and trying to take care of themselves as they deteriorate. They forget to eat, how to comb their hair and brush their teeth. They become a significant health hazard to themselves. Imagine leaving the oven or a stove burner on, or confusing where something goes in the house.

A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines.

Your family’s resources and resolve have meant much in your mother’s care? What about those who are less well-off?

It’s not easy to house and care for Alzheimer’s patients, especially as they get older and require round-the-clock care. I would guess that it costs anywhere from $30,000 to $100,000 annually to provide that level of care. It is inherently expensive. And government assistance for Alzheimer’s care is extremely limited.

Why do you suggest that more African Americans than people of other races are battling this disease alone?

This is not an empirical fact, but my guess is that we tend to be underdiagnosed. In some cases, it’s not even recognized that a person has Alzheimer’s. That’s partly because African Americans, I think, have a harder time talking about illness that affects our mental state, the brain.

How did you get into the pharmaceutical business?

After 16 years in the computer industry, I was recruited into the pharmaceutical industry, not knowing a lot about it. They liked that I had experience in procurement and operations management. Once inside the industry, you learn a lot about drug research, about the way the industry conducts clinical trials … and about who gets into trials and who doesn’t. Your learn about which communities are willing to be a part of trials and which are not, and why some African Americans might shy away. They’ve been less likely to participate because they are aware of such things as the Tuskegee experiment [ed. – in which federal researchers investigated but deliberately did not treat syphilis in black Alabama men. However, fewer African Americans now see that historic tragedy as a reason to avoid enrolling in medical trials, according to more recent research].

You’ve also been pretty vocal about the need for more people of color in clinical drug trials and other medical trials and research. Why?

Years ago, the industry did not actively seek to include people of color in clinical trials. It’s doing a better job today, though there still is plenty of room for improvement.

Equally concerning is whether there is enough willingness among people of color to participate in these trials. We have to find a way to encourage the enrollment of people who are African American and other ethnicities in these trials. As we learn more about the human genome and biomarkers, it is becoming increasingly clear that medicines can be designed and personalized based on your genetic make-up. If African Americans and other races are not in those trials, we are missing an important part of the data that determines the efficacy of drugs.

We have to find a way to encourage the enrollment of people who are African American and other ethnicities in [clinical] trials.

It’s a two-way street. We have to drive that point home. Diversifying the races of people participating in medical research will take some time—but it cannot take forever. Disease does not take a day off.

What are some ways of creating a better mix of the people enrolled in clinical trials?

You do it through education and public awareness. I believe that people will enroll in clinical trials when they learn about why it’s important to participate from people they know and trust. Pharmaceutical companies need to reach out to those communities, and touch people who have influence. And our [historically black] medical schools, the Howards, the Meharrys have a role to play in helping to educate.

Our community has not been educated as well as it should be about the relative risks and benefits of trials; that’s true of Alzheimer’s trials and trials of [interventions] for other illnesses. It’s a question of both whether you know the people who are talking about this and whether you trust what they are saying. Maybe there is a specific aspect of the care or research that you may not trust. Having someone you know and trust talk about that gives you a greater sense of trust and of safety.

Were those hopes—and your mother’s battle with Alzheimer’s—the main reasons you are helping to fund North Carolina A&T’s Center for Outreach in Alzheimer’s, Aging and Community Health? It’s studying the genetics of Alzheimer’s but also providing training and other support to caregivers.

When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal. There is some scientific belief that heredity may play a role in the disease.

That’s one more example of why we, people of color, have to be willing to invest our resources and participate in clinical trials. That has to happen if we are ever going to have a chance … against this disease, which, like mental illness, can carry such stigma in the African American community. There’s no need for the stigma.

When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal.

If we choose not to talk about this, if we choose not to acknowledge the negative impact of Alzheimer’s, then 10 years from now, 15 years from now …  it has the potential to be catastrophic in our community and a huge financial drain on the country.

Do you find it interesting that your career would provide you with such insight on your mother’s illness but, also, what medicine, in general, may mean for different communities?

I didn’t expect this could happen to my mother. It was just not on my radar. But when things happen, if you have an ability, knowledge or resources, then, you are called upon to use what you have to do what you can to help. That governs the way I live my life.

If my mother had to get this disease for me to have a keen interest and to want to see it eradicated, then, I am OK with that.

Profiles

Sex Ed With Brain Damage

Even with brain damage, Megan Andelloux has a real knack for getting people to talk about uncomfortable things.

“When I do something, I do it until I kill it.”

Her whole life, Megan Andelloux was the most self-assured person in the room. As a college student, her friends–sensing her confidence–would come to her, asking questions about sex they were embarrassed to admit they didn’t yet know the answers to. Embracing the role, Megan went on to make sex education her career, working at Planned Parenthood for eight years, and eventually founding the Center for Sexual Pleasure and Health (CSPH), an organization dedicated to reducing shame around sexuality.

Yet when Megan began exhibiting symptoms of a mysterious brain disorder in 2015, she found herself at a loss for the first time in years. For someone who has spent her life being the most self-assured person in the room, her current situation has forced her to face uncertainties both about her future as a sex educator, as well as her own mortality.

Luckily, Rhode Island-native Megan Andelloux, 41, has always been interested in the subjects that others swept under the rug.

Megan Andelloux has spent her whole life educating people about subjects others sweep under the rug.

She jokes that she began her career in sexual education to spite her parents, who never spoke to her about sex. In Mitchell College, she found that while all of her friends had the same sex questions–from how to use sex toys to how have sex without pain–no one was asking them openly. Instead, they came to Megan, who at the time was studying Marine Biology. Friends came to her feeling lonely and scared because they felt that they couldn’t talk about their sexual experiences, whether violent, intimate, or awkward in nature. Megan understood; she had felt the same way herself after being sexually assaulted a few years prior. At that time, she was encouraged to keep the assault hushed, which only isolated her. So she made it her mission to make sure her friends had the support she felt was denied her.

By the end of freshman year, with so many friends coming to her, Megan got the hint: she switched to a Human Development and Family Studies major, with a minor in human sexuality. After completing a B.S. in that department at University of Rhode Island, she joined Planned Parenthood, lectured at Ivy Leagues from Harvard to Princeton, became director of education at a feminist sex shop, and even wrote her own book, Hot and Fast, which aims to unstigmatize the quickie.

But in 2015, Megan’s career as a sex educator evolved into something more profound: end-of-life education and care.“I really thought sex education was the Wild West for a career. Nope,” she says. “The end-of-life thing makes sexuality education look like becoming a kindergarten teacher.”

I really thought sex education was the Wild West for a career.

Through her work, she began meeting with patients who had breast cancer, often terminal. She felt a sense of familiarity with the patients she was meeting. Megan says: “I had created a lesson plan for the women with cancer asking them, ‘Who did you tell when you first had sex? Who did you tell when you first found out you had cancer? What were the similarities in terms of choosing in whom to disclose? How long did you wait?” She discovered “there’s a lot of overlap” between sex education and death-related education.

One of Megan’s fascinations is consent, a topic that has gained lots of popularity with regards to sex. When she began working with dying people, she realized how our framework of consent could not easily be applied to people with brain damage, because partners cannot know for sure if they are in the state of mind to be giving consent. She also recognizes that proper communication about sex or death can often be left until the last moment, when someone is already dying or having sex– if any conversation happens at all.

Perhaps her sudden interest in death and illness was her body trying to tell her something: around the same time, she began to notice changes in her mental state. She suddenly had trouble with numbers and remembering dates,  occasionally showing up to events on the wrong day. Long emails became more difficult for her to read. Finally, after not being able to read a plane ticket or understand where she was, Megan decided to go see a doctor.

With brain damage herself, Megan now concentrates her studies on the places where sex and death intersect, like issues around consent.

She waited. The tests came back without clear results. Using verbal and spatial tests, her doctors were able to map the changed behavior and place the damage within her frontal and temporal lobes, but “it’s not something that can be seen on a scan.” While Megan does not have an official diagnosis, her symptoms are similar to someone who has dementia, so she finds community in dementia and Alzheimer’s groups, both online and in-person.

In 2015, Megan went on medical leave from her work at CSPH to focus on her brain. By then, she was very involved in her volunteer work as at a local hospice. Despite close daily reminders of her own mortality, she found that volunteering to care for the dying “was a way to try to give back and not just take up space.”

She spent three years working with doctors to try and find an answer, but by the beginning of 2017, she decided she couldn’t work with them anymore. “If I [kept] going down this road,” she says with a sigh, “I might not [have survived] it. Just continuously going and looking for an answer just became exhausting.”

“[My partner and I] went through a long period where we would be like, #braindamage…”

Despite the fact that she still doesn’t know exactly what’s wrong with her, Megan tries to treat her illness with humor. “[My partner and I] went through a long period where we would be like, #braindamage,” Megan laughs. “I think it’s important just to name what it is. This is happening. Let’s not ignore it.” It’s the mentality that got her into sex education, the mentality that once got her through a sexual assault, and the mentality that she hopes will get her through her illness: never let facts be hidden, just because they might be uncomfortable.

With her brain damage worsened, and on perpetual leave from the medical world, Megan now aspires to be an end-of-life doula. It’s a role with a surprising intersection with sexuality: as people get closer to death, they begin to lose many of their inhibitions about sex, especially if they have brain damage.

“A lot of times within the literature, [experts will] talk about hypersexuality,” she says. After being in the [dementia and Alzheimer’s] communities I don’t think that this is hypersexuality. I think that the social appropriate filters disappear and we’re actually just seeing what people are thinking.”

Even though Megan has to some extent cloistered herself off from sex education, she plays a vital role within her new communities, talking about sex openly, just, as she has always done in the past.

The problem with both death and sex, says Megan, is that people don’t view them as parts of their lives, but taboos that need to be shied away from. It reinforces stigmas about two of the most natural things in the world, everyday parts of our lives that should be examined and embraced.

That’s why, when she dies, Megan wants to give everyone at her funeral a sex toy, “with the caveat that they have to put it somewhere obscure in their living room so when guests come over…maybe they will see it out of the corner of their eye.” If the guest mentions it, she hopes her friends and loved ones will say: that’s in honor of Megan. She had a real knack for getting people to talk about uncomfortable things.

Essays

Warding Off Alzheimer’s With Tumeric And Brain Games

When my mother was 59, she started experiencing the first symptoms of dementia. Now nearing 50 myself, I'll try anything to stave off the same fate.

Every time I misplace my smartphone or forget where I park my car, or blank out on a celebrity name, I flashback to my mom.

One of the earliest signs that Alzheimer’s was creeping into my mother’s life was the heavy pot of leftover pasta she would mysteriously place in the garage. As the disease progressed, she developed a habit of triple checking her bright orange Le Sportsac pocketbook every few minutes to make sure she had everything (lighter, Evian spray, notebook, coin purse), cursing in her mother tongue of French when something was missing. Eventually, she began to get lost inside our two story Cape Cod home in Long Island, so I wrote signs with arrows (<— bedroom, —> living room) so she could find her way around.

By 59, she moved into a nursing home. She passed away at 70. It’s why, as I inch towards 49, any minute lapse of memory makes me cringe.

The AD statistics hover in my psyche. There are 5 million people who suffer from Alzheimer’s Disease in the country, and 5 percent of those have early-onset Alzheimer’s Disease (diagnosed before age 65), which is more likely to be hereditary. I’ve seen Alzheimer’s close up, and it scares me.

I’ve seen Alzheimer’s close up, and it scares me.

So I do what I can do to keep my brain and body healthy and strong. I power walk almost every day. I learn new skills that go against my natural introversion. I joined a Toastmaster’s group. I borrowed Hindi language CDs from the library. Every year I resolve to meditate every day, but I abandon after a 4-day streak. I tried a Bollywood Dancing class. I add turmeric to my tuna salad and soup. I ordered sage tea online. I tried adding coconut oil, bulletproofing my coffee the lazy way, but after two days of bleccch, returned to half and half. I quit Diet Coke cold turkey, because of a study linking drinking diet soda with increased risk of dementia, Diet Coke was my drink of choice. I miss it though.

I’ll admit to clicking on spammy links that pop up in my newsfeed touting supplements that will give me super brainpower. I skim the headlines and close out. But when a recent study proved that an online speed training game from BrainHQ had the possibility of “cutting the long term risk of dementia in nearly half,” I signed up.

I first tested the waters with their free games. My scores were humiliating.  The categories are memory, intelligence, brain speed, and navigation. Memory was my weakest. I was around 20 percentile for my age according to their high tech calculations. Was this brain fog or the beginning of my brain’s demise? As I learned that shrinkage of the hippocampus is one sign of oncoming dementia, I set out on a mission to make the hippocampus part of my brain happy and healthy. I upgraded to the premium version, but eventually, I quit: I just don’t want to pay the $14 a month. But I feel guilty about it.

If I end up sharing my mother’s fate, I could be checking into a nursing home in the next ten years. The thought buzzes by me sometimes when I drive by one of the memory care centers in my neighborhood. Well, at least I’d be close to home.

Sometimes, the sense of the inevitable is so strong, I have to remind myself that getting Alzheimer’s myself is far from certain.

Sometimes, the sense of the inevitable is so strong, I have to remind myself that getting Alzheimer’s myself is far from certain. All three of my mother’s sisters lived well into their eighties with other aliments, but no dementia. My last remaining aunt is 99, and lives in an assisted living facility for retired nuns in France. She tells me that her bags are packed, her passport is ready for Heaven, but whenever she knocks on the door, God slams the door in her face.

If there was only a way to know for sure I’d get Alzheimer’s. Maybe then, every time I forget my pocketbook, I wouldn’t have an existential crisis. But would it actually change anything? Would knowing that I had the APOE E4 Gene, which triples one’s risk of Alzheimer’s, make it easier for me to meditate at 5am, or renew my BrainHQ subscription, or stop looking longingly at the Diet Coke in the supermarket? And even if it did, would it make any difference?

My mom had a French woman’s mélange of good and bad habits. She smoked most of her life, drank red wine regularly, snacked on pecans and Camembert, loved painting landscapes, shunned processed food, drank coffee, and practiced yoga and meditation. Was it really one of those habits that doomed her? And, conversely, could any combination of her good habits really have saved her?

Recently, a doctor of mine introduced a new wrinkle: did my mother really have Alzheimer’s? She was never formally diagnosed, and she had two very serious concussions due to car accidents. Could her dementia have been caused, or at least sped up, by the brain injuries she experienced in her youth? If so, my risk of Alzheimer’s is no more or less than average. But does it really matter? As the philosopher Michel de Montaigne wrote, “My life has been filled with terrible misfortune; most of which never happened.” Alzheimer’s can still be my burden, even if it doesn’t run in my family at all.