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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 couldn’t 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.

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.

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.”

Q&As

What To Do When Someone You Love Has Alzheimer’s

Alzheimer's is often called the "family's disease." There's a reason for that, says Ruth Drew of Chicago's Alzheimer's Association: with dementia, the whole family's in it together.

Over the last year or so, a relative of mine has become more forgetful. She doesn’t recall things people tell her just minutes before, and becomes frustrated when she feels that people are condescending to her. Yet without their intervention, she forgets things both trivial and profound–whether she has eaten breakfast, for example, or whether her aunt has died.

Although she has not been diagnosed yet, signs point to some sort of dementia, possibly Alzheimer’s. They call dementia a “family disease” because it affects not just the individual, but the family: studies show that supporting someone during this time is time-, energy-, and heart-consuming. But we’re all in it together, so while we wait for more tests, my family tries to support her as best we can.

I, too, am trying to prepare to do my part. But what can I do? What can I say? How do you help a person improve their quality of life while maintaining your own mental and physical health in the onslaught of a disease like dementia?

I didn’t know, so I asked an expert for tips on how to guide families in becoming effective, loving caregivers.

Ruth Drew, director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago

Ruth Drew, a licensed professional counselor, is the director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago. There, she leads the work of The Contact Center, a nationwide 24-hour helpline offering information and counseling to people affected by Alzheimer’s disease.

Drew has a personal interest in the work of the Alzheimer’s Association because her late grandfather had the disease. She told me more about what I could expect, and how I could be there for my loved one as she voyaged into the foggy, undiscovered and unpredictable world of dementia.

The goal is to be so much more than caregivers or well wishers for family.  What I’ve learned from Drew’s insight is to not only show love and empathy, but to also practice gratitude each day; gratitude for the one life we have, and gratitude to be a source of strength when our loved ones are losing theirs.

Why is dementia referred to as a family disease?

A diagnosis of Alzheimer’s disease or other dementia impacts the entire family. It exacts a considerable emotional, mental, physical and financial toll on families, particularly primary caregivers. At its core, families experience the gradual decline of someone they love. This leads to feelings of loss, grief and sadness.

Are scientists finding that families who provide support and/or who are educated on the disease have a positive impact on people with dementia?

Being an informed caregiver is one of the greatest gifts you can give to a person living with Alzheimer’s and other dementias. The more you know about the disease, its progression and what to expect, the better prepared you’ll be to navigate its challenges. Since both Alzheimer’s and dementia are progressive diseases, the needs of the person living with the disease will escalate over time. Anticipating and preparing for the changes, including securing additional help as needed and availing yourself to available resources, is beneficial to both the person living with the disease and their caregivers.

What are some of the first steps a family can take when learning a loved one’s diagnosis?

Receiving a diagnosis of Alzheimer’s is never easy — it’s life changing, not only for the person receiving the diagnosis but for their loved ones as well. There is no one right response to a diagnosis, but it’s important for family members to be supportive during this difficult time. While the individual living with the disease is the only person who can change how he or she feels about the diagnosis, you can share information and provide support to help with the process of acceptance. This can include helping a loved one identify new priorities in the wake of a diagnosis and steps you can take together to move forward, finding new ways to live a positive and fulfilling life. In addition, it’s important to discuss more practical matters such as legal, financial and long term care planning. While these conversations can be difficult, providing the person living with the disease a voice in these important issues can help guide future decisions.

What should family members be mindful of when trying to communicate with a relative who may lose their train of thought or become frustrated from the inability to communicate effectively?

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills. In the early stage of Alzheimer’s disease, an individual is still able to participate in meaningful conversation and engage in social activities. However, he or she may repeat stories, feel overwhelmed by excessive stimulation or have difficulty finding the right word. Here are a few tips for successful communication:

  • Don’t make assumptions about a person’s ability to communicate because of an Alzheimer’s diagnosis. The disease affects each person differently.
  • Don’t exclude the person with the disease from conversations with others.
  • Speak directly to the person if you want to know how he or she is doing.
  • Give the person time to respond. Don’t interrupt or finish sentences unless he or she asks for help finding a word or finishing a sentence.
  • Explore which method of communication is most comfortable for the person. This could include face-to-face conversations, email or phone calls.
  • It’s OK to laugh. Sometimes humor lightens the mood and makes communication easier.
  • Be honest and frank about your feelings. Don’t pull away; your friendship and support are important to the person.

How should family members respond when their loved one exhibits troubling behavior?

When a person [with dementia] behaves in a way that doesn’t make sense… we need to remember that their behavior makes perfect sense to them.

First, it is important to remember that all behavior is communication. People with Alzheimer’s or other dementias often have difficulty communicating their thoughts and feelings in the usual ways. When a person behaves in a way that doesn’t make sense to a family member, we need to remember that their behavior makes perfect sense to them. Instead of dismissing the behavior, do a little detective work to try to understand. People with Alzheimer’s sometimes become anxious or aggressive. They may repeat themselves or withdraw from activities they used to enjoy. When this happens, try to figure out what they are communicating. Are they in pain, cold, hungry, sad, bored or lonely? Are they bothered by something in their environment? Sometimes we can decode the situation and help. Even when we can’t figure it out, we can respond with kindness and respect knowing that it is always worth the effort.

How important is it to establish a daily routine, or does it depend on the person and diagnosis?

A person with Alzheimer’s or other progressive dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust. Before making a plan, consider the following:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or “sundowning”

Make sure to allow for flexibility within your daily routine for spontaneous activities. As Alzheimer’s disease progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

Are there any specific activities a relative could to do with a patient with dementia that you’d recommend in the quest to delay the progress of the disease or improve their condition?

A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves.

Staying physically and mentally engaged is an essential part of living. A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves. Many activities can be modified to the person’s ability. In addition to enhancing quality of life, activities can reduce behaviors like wandering or agitation. Focus on activities the person has always enjoyed and adjust, as needed, to match the person’s current abilities.

For small families, those who live far away, or those who are unable to provide a lot of support, what are some resources available to help improve the quality of life of a person dealing with dementia?

While long-distance caregiving can be challenging, there are resources to help. Learn about what is available in your community by contacting your local Alzheimer’s Association at 1-800-272-3900 or using its online Community Resource Finder. You can also use Alzheimer’s Navigator, a free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.

Creative Commons photo at top shot by Jeremy Hiebert.

Q&As

I’m Still Here: What It’s Like To Live With Dementia

In a brave and important interview, Kim Ovard opens up about her own diagnosis, and challenges assumptions about what people with dementia are capable of.

Kim Ovard will tell you she has dementia. She will tell you about the embarrassment she feels when people disbelieve her, insisting that she “looks okay.” She will tell you about the guilt that haunts her when she considers the burden that this disease will eventually impose on her family. She will tell you about the fear she carries each day as she anticipates the morning when she will awake fully entrapped by this disease, no longer aware that she has it. And she will tell you all of this with full knowledge of the kind of pre-conceived judgement it invites – after all, this is coming from a person that isn’t “all there.”

Kim Ovard and her dog, Friday.

There is an obvious question here about why a person suffering with dementia would open themselves up to pain by rehashing the nuances and inevitabilities of this condition with a practical stranger. For Kim, there’s an easy answer, “I know I have this condition, and I’m okay with it. I just want to make it okay for everyone else.”

Kim Ovard is 52 and lives with Lewy Body Dementia. Together with her husband and her Internet-famous bull terrier named Tugg, Kim spends her days raising awareness for Alzheimer’s and other social issues ranging from bullying to animal rights. A former animal control officer turned social activist, Kim sat down with Folks to discuss the realities of life with dementia and the hope she finds in the mere anticipation of another day to live.

This is a difficult and even embarrassing question to begin with, but how is an interview like this possible for a person with dementia?

That question is why this story is important. That’s how everyone feels, but that fear prevents us from ever asking. People are afraid to talk to us, and so we lose friends. With dementia, it’s day by day and hour by hour. It’s tough to know what to expect.  A lot of times when I go to speak in public, I want my husband around because he can pull me out if I can’t find my words or I keep repeating myself. Honestly, agreeing to something like this is scary. Yet I’m determined to help, so let’s do this.

People seem to have a specific notion of what it means to have dementia, what’s the reality?

The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot, as though I am not here. I constantly get, “You don’t look sick, everyone forgets things.” Each day, I’m afraid to tell people how I feel. Usually, they don’t want to know or simply won’t believe me because I look okay.  People pull back because it will hurt to lose me, and they treat me like I can’t understand anything anymore. My family was in denial, and they still kind of are. They don’t want to believe this is happening.

The reality of being diagnosed with dementia is straightforward: people treat me like I am an idiot…

It seems inhumane for someone to make you convince them that you’re actually sick. How do you respond to disbelief?

That is a funny thing. I don’t fight them. I’m 52-year-old and I do more than most people. Honestly, I just don’t push it. If they’re around me enough, they eventually see it. I don’t look for sympathy.

Could you tell me a bit more about why is it scary to tell people the truth about your condition?

Imagine if you, a writer, told me that you had dementia. Now I’m wondering if you’re going to get my story right. I’m wondering if you’re going to remember my words. As soon as you’re diagnosed, people treat you like you don’t exist and talk around you. Honestly, they don’t know any better, they go by what they read on the internet. I just want people to know that I’m still here.

Could you unpack what you mean by “I’m still here.” There seems to be a lot of meaning embedded within it.

There’s a lady that I know who is familiar with my diagnosis, and she thinks I’m sicker than I am. I still function. I still work. Anyway, we were in public at a comic con with my dog and she was there and came out in front of the booth and asked me how traffic was that day. We’re in a big convention center and I said that it was busy. The next thing I knew, she walked up beside me and took me by the shoulders and shook me. She said, “Kim, I’m talking about the traffic outside.” I had answered the question right and I had heard the question. Yet because I have dementia, she assumed I was off. This was someone I knew. This is the kind of discrimination that we face. It’s really hard. I want to remind people that I’m still here!

The scariest thing for any of us is that we might lose our ability to communicate that fact, but we’ll know what’s going on. It’s scary to be us, but then it’s scary to know what I’m going to do to my family. That’s the worst part. But I’m still here.

You’re most afraid of what this will do to your family? This seems counter-intuitive. Haven’t you got enough to be concerned about?

It’s true, the worst part of having dementia is not what I face, it’s the knowledge that eventually I might be bed-ridden. I’m afraid of what that will do to my family. They’re going to lose me, so I try to protect them by hiding what’s going on. You’re right, common sense would say that everyone should take care of me, but I work hard to protect them. They want to fix me, but they’re slowly realizing they can’t help me.

There are states that offer assisted death, which I couldn’t do it because of my faith, but I’m not sure it’s a bad thing. If I’m going to be a vegetable, I’m not sure that I would just rather die than put my family through all of this.

It’s scary. Could you imagine losing yourself?

I can’t. That terrifies me. Before your initial diagnosis, did you know something was wrong?

When dementia hits, it starts with simple things. We know something is wrong, but pinning down the symptoms is like playing whack-a-mole. Every day is different, so it’s tough to put your finger on it. All we know is that we’re not ourselves anymore. We can’t pay the bills, even though we have all your lives. We can’t find words, everything becomes a “whatcha-ma-call-it.” We get lost on roads that we have driven all our life. We can’t find our way in a building or out of a simple parking lot. We become a kind of masquerader, where we try to hide the mistakes we’re making. Of course, people notice but we find a way to laugh it off. By the time all this is happening, if you’re like me, you’re in the best time of life.

When dementia hits, it starts with simple things… pinning down the symptoms is like playing whack-a-mole.

Did you tell anyone?

I only told my husband but only after I had to.

Once you were officially diagnosed, how did your friends and family respond?

Sadly, we lose friends. Again, this disease is hard on our loved ones. I do a lot on Facebook, both with my dog and advocating for people with Dementia. Anyway, I had this one lady contact me and say, “I can’t read your work anymore because it breaks my heart that I’m going to lose you.” Those were her feelings. Can you imagine my feelings? I want to talk from the inside, but people are afraid to listen. It’s no wonder we’re quiet.  

I noticed that you say “us” and “we” when talking about dementia. Why is that? Do you feel like you have a responsibility to speak for others?

I’m just that type of person. My world has always been “we” or “us.” I know I have this condition, and I’m okay with it. I just want to make it okay for everyone else. What matters in the work I do is changing the lives of people like me. My world entails walking out in life and seeing who I can help. I wish the world thought this way, because it would change. Every day I ask who I can help. People with dementia are so often afraid to talk about their conditions. A lot of them say that I’m brave to talk about it on Facebook. For me, I’ve got this, so I want to tell people and show that I can still do things. Yet others are afraid that they’ll lose their jobs, they’ll lose their families, they’ll lose their friends, they’re afraid people will think they’re dumb. I try to speak for them.

What advice would you give someone that has had a loved one diagnosed with dementia – how should they approach them?

You just need to speak openly to them. Allow them to get their fears out there, and this can be scary. They’re already hurting, they’re coming from a place where they’re losing everything they know. Help them. Talk to them. Don’t say, “do you remember that or do you do that?” If they’re calling it a whatcha-me-call-it, try to help them locate that word. If they repeat themselves a few times, there’s no need to correct them. Really, you just need to be there with them. In the stages that they can’t talk, don’t assume that they’re not in there. There’s the language of hugs. Just sit there with them. They’re in there. Just love them. I guess that’s the most important thing.

Could you give me a window into daily life with dementia?

“I’m still here.”

Each day, each hour it changes. Let me give you a bit of my day. At night, I have night terrors from hell, alternate reality that I act out and wake from not knowing what is real. The dream is just like reality only I can’t escape the horror. I try as hard as I can to be the old me, but I have a new normal daily. I might have Parkinson’s symptoms, tremors, wobbles, walk slow, stiff. My ass leaks. I can’t find words or always understand what someone is trying to say. I can’t control my blood pressure, or anything my brain does because I’m just at its mercy.

I get angry. I curse, and cursing is not me, but I know my disease is acting up more than usual when I do. I lose empathy, I find the wrong things funny, and I say things that don’t know I’m saying.

How do you maintain a sense of identity?

This disease is erasing me from myself. My fear is that I will be trapped inside of myself and not be able to communicate, and yet I will know what’s going on outside of me. Imagine hiding all this and more. But if you’re having a good day you can do things like this interview.

This disease is erasing me from myself… But if you’re having a good day, you can do things like this interview.

How do you fight back against this condition?

For me, fighting back is talking and not fearing what will be thought. I speak to many people with this disease. We are in here – still inside our bodies and minds – but treated as though we are not. That being said, I still don’t tell everything for fear of what others might think. I’m still learning to let it all out.

In the midst of this, where do you find joy?

I have found that I am a hope giver. I find joy every day. I believe in God. I see miracles and beauty every day. Life is beautiful. I wish people didn’t take it so for granted. When you leave home tonight, pay attention to what’s around you. Open a door for someone and have them smile. I just get a kick out of life. I think that those of us that are dying sometimes live more than those of you that are living. It’s just beautiful. My joy has to do with who I can help. I wake up every day and thank God for giving me another day that I can help someone. I wished people just lived. I don’t get too down about things. We’re all going to die. I’m going to enjoy mine.