Forgotten memories

Story by Jill Vejnoska
Images and video by Ben Gray

They have different recollections of where the conversation took place. She says they ran into each other at 7 Stages Theatre, he remembers bumping into her at a coffee shop.

It hardly matters. What Carolyn Cook and Adam Fristoe agree on - one small shared memory in a much larger story about how memory tragically slips away -- is what he asked her last fall. And the urgency of her response.

Grace Roselle
Before passing away in the 1990s, she suffered from dementia and spent her final years in a Dalton nursing home.

June Sparks
Diagnosed with dementia several years ago, she surprised her family by moving back to Atlanta in 2010.

Carolyn Cook
Acclaimed local actress will star in 'Blackberry Winter', an upcoming play about Alzheimer's disease.

Emily Cook
Carolyn's 17-year-old daughter has thought a lot about the toll dementia has taken on the people she loves.

Fristoe's theater company, Out of Hand Theater, was creating a play about Alzheimer's with writer Steve Yockey, and he thought Carolyn would be perfect to help them shape the script and play the lead role. Maybe too perfect. He knew her 87-year-old mother, June Sparks, suffered from dementia. He also knew that in addition to being a wife, mother and one of Atlanta's premier stage actresses, Carolyn was one of her mother's primary caregivers.

"I wanted her to work on it, but only if it would be emotionally good for her to do it," Fristoe said.

Who knew if one actor's plum part could be another one's art-imitating-life-too-closely intrusion? After all, they'd been down this road in Carolyn's family before. Some two decades before Carolyn became a caregiver, her mother June had played the same role for her mother, who'd also suffered from dementia. Just as Carolyn knew her teen-aged daughter might someday have to do for her.

Will you help us with the play? Adam asked.

Yes, Carolyn said. YES.

If I don't get to open my mouth and tell about my life, she said. I'm going to burst.

Something's not right

The real-life drama involving June Sparks crept up on the family starting about six years ago. Carolyn's brother, David Sparks, and his wife were visiting from Iowa. June offered to drive the out-of-towners to a relative's concert but got lost and, as David would later tell Carolyn and their sister Juliana Lancaster, she uncharacteristically "freaked out a little."

Oh, David, why did you let her drive?, Carolyn said, gently chastising her brother. Why didn't you just stop at a gas station for directions?

But David found the incident tougher to dismiss. Their mother had grown up in Atlanta and was intimately familiar with the city, from Decatur to West End. The retired college math professor knew these roads like she knew square roots and multiplication tables. Until, it seemed, she didn't.

David had witnessed dementia up close, having lived through it with his mother-in-law. He began to suspect it might account for some other changes he'd noticed in their mother.

"David was like, 'OK, we're on this path now.' I was like 'No, we're not,'" Carolyn said. Let's keep an open mind, said Juliana.

The retired college math professor knew these roads like she knew square roots and multiplication tables. Until, it seemed, she didn't.

Months passed and evidence began to mount. June forgot her way to the dermatologist, who'd been treating her regularly for eczema. She left a meeting of her quilting group and wound up at a different restaurant than the one at which everyone had agreed to reconvene. Her embroidery club planned a trip to the North Georgia mountains and she arrived empty-handed.

"June didn't have a jacket, no money, no medication, no clothes to sleep in," recalled her friend Joann Williams.

Eventually she was tested at the Emory Memory Disorder Clinic and diagnosed with mild cognitive impairment. Essentially a gray area that exists on the spectrum between normal age-related memory loss and Alzheimer's, people with MCI may have trouble remembering certain names and words. Or, as in June's case, suffer from short-term memory loss, meaning she could sometimes remember her distant past better than something that occurred as recently as 20 minutes ago.

June had lived on her own since her husband, George, an engineer who later became an Episcopal priest, died in 1998. After the diagnosis, she decided to sell her house they'd lived in since Carolyn was 17 and move into a retirement community in Dalton. All three siblings visited often, and June seemed thrilled to be surrounded by a network of friends and activities in her adopted hometown. An expert confirmed that her new environment was the best medicine for her at that time.

"She looked Mom straight in the eye and said, 'I really think you should stay in Dalton as long as you can,'" Carolyn said about the neurological nurse practitioner who'd begun seeing June after her diagnosis. "'Your friends, your church - they're all here.'"

Less than a year later, June stunned Carolyn when she called one day and said, I've given notice on my apartment here. She was moving back to Atlanta.

Alzheimer's: The Disease

June Sparks has been diagnosed with dementia, a brain disorder caused by one of several conditions or diseases. By far, the most common cause of dementia is Alzheimer’s disease.

Though June has not been tested for Alzheimer’s, recent developments in research have made it possible to diagnose the disease in living patients; previously, only autopsies could determine it.

Leading Cause of Death

The rise of Alzheimer’s has been dramatic, particularly for a disease that wasn’t even identified until a little over a century ago. Today, it is the sixth leading cause of death in the U.S., fifth among diseases, according to the Centers for Disease Control. Every 67 seconds, an American develops Alzheimer’s, and there is no cure. SOURCE: Centers for Disease Control and Prevention

What it is, how it spreads

What is Alzheimer’s? How does it start, and when? Dr. Allan Levey of Emory University’s Alzheimer’s Disease Research Center discusses what is happening to the brain of an Alzheimer’s patient.

Déjà vu

"My memory was failing, and I knew it," said June, one sunny morning last spring inside her cheerful three-room apartment at Arbor Terrace, an assisted living center near DeKalb Medical Center. Family members beamed out at her from framed photos displayed on bookshelves and tabletops. Her face framed by a pixie haircut, June's eyes dance merrily behind big glasses at lighthearted moments or fix on you openly without a hint of self-pity when the conversation turns serious.

"When it was time for me to come here," June said, "I just knew it."

Something else she knew was the strain of being the caregiver for an aging parent with dementia. She'd gone through it with her own mother - the fitting coda to a complicated relationship that stretched back to June's childhood in Atlanta. Standing a diminutive 4-foot-9, Grace Rosselle possessed an iron will when it came to her oldest daughter. June was expected to cook and sew and help care for her three siblings, while also getting good grades and staying active in church and civic activities.

"Let's just say she was strict," June said. "She expected a lot of me."

And June delivered. At age 13, she sold 240 dozen doughnuts to win a two-week scholarship to summer camp. She made the all-city orchestra as a violinist in high school, then won a scholarship to Randolph-Macon Women's College, where she double majored in math and chemistry.

June went on to teach middle school math in Alexandria, Va., while George attended the seminary - taking off just six weeks when Carolyn, whom she impishly calls "our seminary surprise," was born. Later, when George was made priest at St. Mark's Episcopal Church in Dalton, she took a job as a math professor at what would soon become Dalton State University. She also threw herself into church and community activities, even helping to create a food bank when she discovered Dalton didn't have one.

By the late 1980s, June's mother Grace wasn't faring so well back in Atlanta. Widowed and living in an apartment on Roswell Road, she was showing signs of dementia: wandering her neighborhood distractedly and dangerously near traffic; forgetting routine tasks during her volunteer stints at the hospital; mistaking June for her younger sister.

"She lost touch with herself, that's the best way I can put it," June said softly. Grace was eventually diagnosed with "senile dementia, Alzheimer's-type."

"Sometimes it just gets to the place where you have to do it for them."

June and George convinced Grace to stop driving by telling her there were problems with her car they couldn't afford to fix. So every Saturday, June left her busy life behind in Dalton and drove down to Atlanta to be with her mother: Taking her to the hairdresser, making sure her kitchen was stocked and the bills were paid.

Eventually June found an assisted living center close to them in Dalton.

"She didn't want to leave Atlanta," June said. "I brought her anyway."

You don't love me, Grace would tell her daughter. Why else would you have put me in a nursing home?

"I'd just say, 'I love you, too,' and give her a kiss," June recalled. "Sometimes it just gets to the place where you have to do it for them."

She keeps remembering to tell her own children that. Even as her memory fails, she keeps remembering that.

In the spotlight

One afternoon last April, Carolyn Cook scurried into a stuffy rehearsal room at Horizon Theatre in Little Five Points lugging an armful of clothes on hangers and apologizing for being late. "I had to drive people," she informed Adam Fristoe. "I brought some outfits to change into. Or not change into if you don't like them for her."

Her. "Vivienne." The character Carolyn plays in "Blackberry Winter," the new play by Steve Yockey that Fristoe's innovative Out of Hand Theater company was now deep into the process of developing. Like Carolyn, Vivienne is the daughter and caregiver of an elderly woman struggling with dementia.

The first workshop performances at Horizon were less than a week away, and so for the next three hours, Carolyn almost never stopped rehearsing. Running entire scenes once, twice and - in one case - four times. Seeking just the right tone here or tilt of the head there to make Vivienne more real.

After making it through one long monologue, she looked to Fristoe for a critique, but the director wanted to know her thoughts.

"Tell me," Fristoe said.

It was a sign of how highly regarded she is in Atlanta's theater community. Over the course of her 25-year career, she's turned in memorable performances in everything from Shakespearean tragedy to French farce (in French, no less) and been equally willing to blend into an ensemble cast or command the stage in a one-woman show.

"She's said to me many times that she just feels compelled to make art right now, she needs to make art"

"I know very few actors who can hold the narrative arc by themselves and hold an audience rapt for 1 1/2 hours," Fristoe said.

Carolyn got her first acting role in fourth grade, starring in a school production of "Mary Poppins" (June made her costume).

But Carolyn didn't consider acting a viable career option when she followed her mother's path to Randolph-Macon, where she majored in French.

After college, she worked in public relations and took some graduate courses with the intention of becoming a drama professor. She also married Matt Cook, currently news director of radio's Georgia News Network, whom she'd known since junior high. Wed for 32 years, they live in Clarkston with their 17-year-old daughter, Emily.

But acting kept calling. At 28, Carolyn landed a two-year professional internship at the Alliance Theatre, then spent the next two decades building an impressive body of work around metro Atlanta. She stepped into career-making roles - Joan of Arc in "Saint Joan" and Blanche in "A Streetcar Named Desire" at Georgia Shakespeare - and showstopping ones, as when she played 24 different characters in the one-woman show, "The Syringa Tree," at Horizon Theatre in 2005. In 1996, she founded Théâtre du Rêve, which performs full-length plays by the likes of Moliere and Sartre entirely in French.

A few weeks before the first "Blackberry Winter" rehearsal, Fristoe mused about the "major time commitment" learning the play would be for Carolyn, who'd be onstage continually for some 90 minutes. She was already juggling so many different responsibilities; still, he'd never seen her more committed to playing a part.

"She's said to me many times that she just feels compelled to make art right now, she needs to make art," Fristoe said. "It seems odd, because she's been an artist all her life."

He paused then said, "It means something different to her now."

Alzheimer's: The Epidemic

There is universal agreement among the medical community – the U.S. will experience a dramatic surge in Alzheimer’s in the next few decades. SOURCE: Emory University

Levels of diagnosis

Longer life spans mean more people will be moving from early to advanced stages as well. Here's a breakdown of how the percentage of people with mild, moderate and advanced Alzheimer's will shift through 2050. SOURCE: Alzheimer's Association

A gender gap

Statistically, women live longer than men. As a result, women have a much higher risk of becoming Alzheimer's patients. The gap is expected to widen for the foreseeable future, according to projections from the Alzheimer's Association. SOURCE: Alzheimer's Association

An aging nation

The single biggest determining factor behind Alzheimer's is aging. The huge baby boomer generation will boost the percentage of senior citizens in the coming years, according to Alzheimer's Association projections.

Role of caregiver

When June moved back to metro Atlanta in fall 2010, Carolyn's care-giving duties shifted into high gear. Because June was accustomed to being so active, her daughter felt responsible for making her feel fulfilled here. She got June involved with Newborns in Need, whose members make baby blankets, and Knit Wits, a group that makes baby caps for a birthing center in Guatemala. She even secured a "job" for June folding napkins in the dining room at Arbor Terrace. Carolyn visited often and took her mother on shopping trips, up to Dalton to see friends and to her home in Clarkston, where she could bake and do other little domestic tasks she missed.

"I became my mother's social secretary," Carolyn said wryly.

Meanwhile, Carolyn immersed herself in the world of Alzheimer's and dementia, reading every book and magazine article she could get her hands on and attending workshops and support group meetings.

"Other than raising my daughter, it was the most important thing going on in my life," Carolyn said. "It was the central work in my life."

Perhaps it was inevitable that as care-giving took center stage, acting would recede into the wings. For the first time since 1996, Carolyn didn't audition for the summer season at Georgia Shakespeare. She'd decided to pull way back on all her acting work, in fact, and concentrate mostly on doing workshops at places like Théâtre du Rêve, where she'd recently stepped down as artistic director.

"I don't want her to hear how hard it is to have a mother with dementia."

She soon realized she'd underestimated the demands of being her mother's caregiver, not to mention being the mother of a teenager.

"I felt overwhelmed," she said. "Like I couldn't do anything well."

But she couldn't get away from acting, no matter how hard she tried. One day she was feeling particularly overwhelmed and started crying while talking to her sister.

I feel like I spend all my time now adjusting to other people's realities, she said.

Carolyn, that's your life's work, Juliana told her younger sister. Every time you take a role, you adjust to someone else's reality.

Now more than ever, it seemed, Carolyn needed to be onstage.

"Acting is her way of problem solving," observed Juliana, an associate professor of psychology and the director of institutional effectiveness at Georgia Gwinnett College. "It was making her nuts. She had to pull back and start establishing some boundaries."

Carolyn's first big show after her return to acting was "Time Stands Still" at Horizon Theatre in fall 2012. Playing a war photojournalist injured by a roadside bomb in Iraq, she won the 2013 Suzi Bass Award for best lead actress in a play. As usual, June was in the audience to see her daughter perform. She never misses a show.

It was while sitting in the audience at Aurora Theatre last February, waiting for the curtain to go up for "Lombardi" (Carolyn played the legendary football coach's high spirited wife, snagging another Bass nomination), that June read the program notes on her daughter:

"She is currently working with Out of Hand Theater and playwright Steve Yockey to create a new piece about Alzheimer's disease, called 'Blackberry Winter.'"

I'm so glad you're doing that, June told her daughter before offering to donate $100 to help mount the production. Especially after what I went through with my mother.

Carolyn did as her mother asked and arranged for the donation. But this is one show she does not want her mother to see.

"These are her truths," Carolyn said softly. "I don't want her to hear how hard it is to have a mother with dementia."

Alzheimer's: The Cost

The emotional, physical and psychological toll that Alzheimer’s takes on families is staggering. Yet the financial costs involved are just as daunting. In the U.S., it is already the most expensive disease in terms of patient care and lost productivity – over $200 billion annually. SOURCE: New England Journal of Medicine

Medicaid and Medicare

As the numbers of Americans suffering from Alzheimer’s rises, the amount of money spent by the government to pay for treatment and care is expected to skyrocket. SOURCE: Institute for Neurodegenerative Diseases

Costs per U.S. adult

Overall, Alzheimer’s costs every U.S. resident 18 years and older more than $400 a year. According to a study by the New England Journal of Medicine, the costs will significantly outpace the population growth in coming years. SOURCE: New England Journal of Medicine

Costs per patient

The costs involved in caring for an Alzheimer’s patient vary depending on every family’s situation. The figures below were the average U.S. cost for a patient in 2010. Not included are the unpaid hours of caregiving by family members and others.

According to the Alzheimer’s Association, in Georgia alone, it is estimated that unpaid caregivers spent 569 million hours helping Alzheimer’s and dementia patients in 2013. SOURCE: Alzheimer's Association

Truth in fiction

"Now would you like to hear something cute?"

Yes, please. The Horizon Theatre audience seemed to collectively exhale with relief when Carolyn, in the role of Vivienne, posed that question with forced cheerfulness during the first workshop production of "Blackberry Winter."

The preceding scene had had the audience on an emotional roller coaster as Vivienne described the precise moment when she and her sister, Marie, learned of their mother's Alzheimer's diagnosis. The moment when everything - and nothing - suddenly made sense.

But now, Vivienne informed them, "I give Mom her haircuts ...

" ... When we do the haircuts in her bathroom, she has this little Dustbuster that she uses to clean up. She just loves it. But when we do it at my house, out on the back patio, that's the ticket. Because I don't have a Dustbuster, so I hand her a broom and let her sweep up the hair. And then she just keeps sweeping. And something about the movement, the task itself, she's more relaxed and lucid while she's sweeping. Her humor comes back, that biting humor that I'm on the receiving end more often than I'd like. But I'll take it if it comes with the rest of her."

* * *

I'm sitting here crying that you have to hire someone to be with me. I'd rather go out when you can take me. If you can't, I'll just sit here.

"Blackberry Winter" is almost all Vivienne, comprising 10 sharply observed monologues that use objects such as scarves and a recipe box as jumping off points. (The only breaks come when an Alzheimer's "creation myth" featuring actors portraying an egret and a mole appears onstage.) Most notable among these inanimate objects, for the way it keeps reappearing to torment Vivienne and test her notion of what it means to be a loving caregiver: An envelope from her mother's assisted living center she doesn't want to open, because of the bad news it likely contains.

But the script for "Blackberry Winter" is not solely based on Carolyn's story. Vivienne is a composite of many different people's qualities and experiences based on the production team's research. She shares many similarities with Carolyn, but there are differences, too. For instance, Carolyn has two siblings who actively help her shoulder responsibilities; Vivienne has no support system.

When Carolyn was gearing up for her return to acting, she said she gave herself "permission" to hire some help for her mother. She researched agencies and checked backgrounds to find just the right person to sit with June, take her shopping and otherwise offer support. The whole family was on board with the idea, including June.

But then June phoned her.

I'm sitting here crying that you have to hire someone to be with me. I'd rather go out when you can take me. If you can't, I'll just sit here.

"It broke my heart," Carolyn recalled.

It was a rare instance of June deviating from the script, the one where she is determined to make life easier for her children than her own mother did for her.

June has made sure her kids know that if and when the time comes that she needs to go into a special care unit or a nursing home, they have to make the tough decision for her.

"I learned from my mom not to fight it," June said one morning in her apartment, where Carolyn sat quietly working on a tiny Newborns in Need blanket. "I've very carefully informed them they need to do what needs to be done. It doesn't matter how much I might fuss, they have to make any change that's needed."

Carolyn dropped her sewing in her lap and smiled at her mother.

"I love you Mom."

"I know you do," June reassured her, one caregiver to another. "I love you, too."

Alzheimer's: The Research

There is no cure for this disease. However, there have been significant breakthroughs in just the past few years, particularly in early detection methods. Dr. Levey of Emory's ADRC explains how this is a big step toward finding a cure.

A lag in funding

Because Alzheimer's is considered a relatively "new" health concern in the public consciousness, research funding to find a cure often lags behind long-recognzied diseases. The chart on the left shows the death trends for six major diseases from 2000-2010. The chart on the right shows the research funding for the same diseases in 2013. Move your mouse over the bars to see the figures. SOURCE: U.S. Department of Health and Human Services

Family legacy

On a nearly cloudless, blue sky day in early May, Carolyn settled in for a leisurely lunch on the patio of a restaurant in Oakhurst. She was joined by her daughter, Emily, now a high school senior, whose small, slender frame and long dark hair could easily win her the role of her mother's younger self in a play or movie. She's a typical teen in some ways - joking about her grandmother smothering her with kisses on weekend mornings when she's still just trying to wake up, and barely containing a sigh when asked what she wants to major in some day.

In other ways, though, she's remarkably grownup. She's clearly thought a lot about the toll dementia takes on the people she loves, and she doesn't seek sympathy or shy away from asking tough questions. But she also knows when to keep quiet and just listen, as when her mother talked about what it had been like working on "Blackberry Winter."

The five workshop shows couldn't have gone better, Carolyn said, sneaking a Tater Tot off Emily's plate. They'd made small tweaks after each performance, and Yockey was putting a final polish on the script, which was selected from 63 entries for The National New Play Network's annual new play showcase in Sarasota, Fla., next month. (For information on the play's progress, check www.outofhandtheater.com).

After months of preparation, finally getting to say Vivienne's lines onstage had proven cathartic. For so long, Carolyn had felt the need to make art from her own emotions and experiences, and she'd gotten to do that; meanwhile, the differences between her and her character had allowed her to stretch as an actress.

Still, she was glad to be done with it for now. Between performing "Blackberry Winter" and taking care of her mother, "Dementia got an awful lot of my time that week," Carolyn said with a chuckle.

After the first night's workshop performance, she'd taken a seat in the front row during the "talk back" session led by Fristoe, the director. When it came time to discuss the character of Vivienne, some audience members addressed Carolyn directly.

It was very real the way you said you and your mother are both changing.

You did a good job talking about how you and your sister got the diagnosis.

You seem really alone sometimes.

Each time Carolyn thanked the person for their feedback, but she also took pains to point out she's not Vivienne. The rest of the week, she sat in the back of the theater and quietly listened to the post-show comments.

"I didn't want it to be about me," she explained. "It was really important that the focus be on the play."

She knows full well the power of drama to heal and to help start conversations about important subjects.

Increasingly, too, she understands it matters what you focus on.

"I'm watching her become the type of caregiver I'd want to become."

Emily was in the audience for one of the workshop performances. She likes to see all of her mother's shows. This one, in particular, she couldn't miss.

"I knew a lot of the play had sprung from our experiences, and I wanted to know how it would be treated," she said. "And I knew there would be pieces of her (mother) that I wouldn't know otherwise."

She still wasn't sure if some things Vivienne described had actually happened to Carolyn. But it was OK. She already had a pretty good idea who her mother was.

"I'm getting a rare opportunity of seeing my parents - my mother specifically - grow as a person," Emily said. "Watching her struggling with things and figure them out. And getting to be a better caregiver and person than I could imagine being.

"I'm watching her become the type of caregiver I'd want to become."

They both know it could happen someday. Given dementia's presence in her family, Emily knows there's a strong possibility that history will repeat itself again, and that she'll end up caring for her mother someday.

"At this point, I do not worry that I am going to get dementia," said Carolyn, who seems more concerned about the possible impact of being a caregiver on Emily as an only child. "I can't spend my energy on that. I focus on, 'I'm 53, I have at least 20 good years ahead of me, it's all made up of individual days I can focus on.'"

Just the previous day, in fact, she'd told her husband she was going to write a post for her blog (lifelongmetamorphoses.wordpress.com) titled, "Dementia, the Good Points." She and June had gone to a mall, but what they'd planned on doing involved too much walking. Instead, they'd plopped down next to each other on a porch swing and started slowly rocking.

Not so long ago, Carolyn would have kept pushing herself and her mother forward, straining to fill each moment. Now she realized she was content to be rocking in place with her mother.

"We were sitting there, gently swinging, and she just relaxed," Carolyn said. "Her head was on my shoulder, I had my arm around her and all the tension went away. I felt needed and grateful.

"Grateful, right where I was."