When Grace Rosselle was struggling with the final stages of dementia, combined with other age- related health problems, she would sometimes question why she was allowed to suffer.
“Why does God keep me here?” Grace would ask. “Why don’t I just die?”
June Rosselle Sparks ’48, her oldest daughter and primary caregiver, would answer, “So I can learn to love you in a whole new way.”
Grace died in 1992. About 20 years later, the cycle began again—this time with June. One of the first incidents that sparked concern was during a visit by June’s son and daughter-in-law to see her in Atlanta. June drove them to a concert, but despite her familiarity with the city, she ended up completely lost and uncharacteristically anxious.
When her son relayed the experience to his siblings, it was the first time they wondered if this was an indication that their mother might be facing dementia. The youngest, Carolyn Sparks Cook ’82, however, chalked it up to a senior moment.
“I wasn’t sure about it. I was a little more hesitant,” said Carolyn, recalling the discussions they had about their mother’s future health. But as time went on, she saw more signs that her mom was having trouble with cognitive tasks. “Within a year, we were all on the same page about it.”
June agreed. “Accepting it is the most essential thing,” she said, recalling how her mother never admitted to needing help. “I’m pretty comfortable with my kids,” June continued. “I tell them I don’t remember well, so just take care of things.”
Today, June lives in an assisted-living facility near Carolyn’s home in Atlanta. After years of dealing with worry, fear, and grief about their changing lives, the family has settled into a new version of normal: frequent visits and frequent episodes of anxiety or lost memory. “I look forward to every visit by my children,” June said. “Every day that I remember who I am and where I am, I give thanks. I don’t know how much longer it will last.”
June has never been tested for Alzheimer’s disease, but she has been diagnosed with dementia. Of the several types of dementia, Alzheimer’s explains her symptoms the best, Carolyn said.
After June’s diagnosis, Carolyn cut back the fervor of her award-winning acting career. She pursued fewer projects so she could focus on taking care of her mother and her teenage daughter, Emily.
This year, she was able to blend her life as caregiver with her career as an actress in a project with Atlanta’s Out of Hand Theater. Adam Fristoe, co-artistic director, and playwright Steve Yockey had an idea for a play about Alzheimer’s. They asked Carolyn to help develop the idea and play the lead role. “I was so excited,” Carolyn said.
“I was trying to figure out how on earth to merge my artistic life and this massive family event in some way that was meaningful to me.”
In Blackberry Winter, Vivienne (played by Carolyn) shares her journey as a caregiver for her Alzheimer’s- stricken mother. Interspersed with her monologues are scenes of an egret and a memory-stealing mole acting out an origin myth for Alzheimer’s. Last spring, they gave five workshop performances to gain audience feedback. Fristoe was pleased with
both the response as well as Carolyn’s performance with the difficult, personal subject matter. “She’s a terrific artist, and she has a tremendous amount of empathy,” he said.
The production provided a cathartic experience, but it also challenged Carolyn as an actress because she had to assume the character of someone very different than her but with many similar experiences. “I didn’t want to get up in front of people and just talk as Carolyn about my experiences,” she said. “But a lot of my words about my experiences wind up coming out of the mouth of this character.”
The final script was accepted in November of 2014 to the National Showcase of New Plays, which exposes producers and directors to new scripts. Fristoe plans to direct a full production of the play in Atlanta this fall.
The performance also drew the attention of Atlanta’s daily newspaper, The Journal-Constitution,which published an extensive story in October covering a wide range of the experiences of Carolyn’s family and tying their story to national trends about Alzheimer’s and dementia.
The article takes an honest look at the challenges of dealing with a family member with dementia and the role- reversal as a parent becomes more like a child. Carolyn told the newspaper that at first, it was easy to see her mother as a problem to be solved. “I finally had to say, ‘She’s not a problem, she’s a person,’” Carolyn said. “I need to find ways to interact with that person.”
They share frequent visits and go for walks or shopping. Carolyn helped June get involved with a knitting group, as well as an organization that makes baby blankets for families in need. June also attends some of Carolyn’s
performances. June’s other two children are also
very involved in her care. “The whole process of caring for mom has brought the three of us closer together,” Carolyn said. “It’s grown our relationships as adult siblings.”
When Carolyn first stepped into the role of caregiver, she went through a phase of significant anxiety. If dementia was affecting a second generation in her family, would it touch a third? Would she someday find herself losing her memories? How would her daughter, an only child, manage to help her?
The years since have assuaged those fears. Carolyn sees how she has been able to adapt to caregiving and how research continues to yield new ways of helping with Alzheimer’s. “I hope that the medical community and the caregiving community will keep developing better and better models of care,” she said.
Carolyn also takes inspiration from the way her mother has faced the disease. “I hope I’ll be as brave about it as she is.”