How Alzheimer's turned a daughter into her mom's mom
Loretta Veney remembers with perfect clarity the moment the word “dementia” was spoken by her mother's doctor in 2006.
“My heart really sank, but I tried to put on a brave face for my mom.”
Upon hearing the diagnosis, Doris Woodward immediately turned to her daughter and said, “That's bad, isn't it?”, to which Veney replied, “Yes, but there are worse things.”
Woodward's response: “Besides dying, what's worse than not being able to remember anything?”
Ten years later, now age 86, Woodward appears to have no memory of that visit to the doctor, nor does she recognize Veney as her daughter.
As her mother's memories began to fade, Veney fashioned a new role for herself as a memory-keeper, leading her to write and self-publish “Being My Mom's Mom: A Journey Through Dementia From a Daughter's Perspective.”
“When I started looking for information to help me understand more about dementia,” she says, “I found that there weren't a lot of books that were written from an adult child's perspective, and there were definitely not any written by African-Americans. So I thought maybe I could write down my experience, the things I'd learned, the things that I did wrong, and make it a little easier for someone else.”
Veney, 57, once feared a time when her mother would no longer remember her, writing in her book, “I never want to think I am forgettable.”
Now accustomed to her mother's memory loss, Veney shrugs it off: “People will say things to her about her daughter Loretta, and my mom is very polite and just nods, but if you ask her if she has any children, she'll say no.”
Writing as therapy
Writing the book ended up being an unexpectedly cathartic experience. Because her father left the family shortly after she was born, Veney was brought up by her mother in her grandparents' home and never met her father.
“Being My Mom's Mom” traces the journey that she and her mother have taken together since 1959, including Veney's academic successes at Catholic University and George Washington University. She studied criminal justice and forensic science, receiving undergraduate and master's degrees by the time she was 21.
She later married Tim Veney, a police officer who was several years older and had an 8-year-old daughter when they met.
“My mom wasn't too thrilled when she first heard about him,” Veney says, “but she loved him after she met him.”
She got her private investigator's license in order to track down her father so her mother could get a divorce, Veney says, Lorenzo Woodward died in 1990, but it wasn't until 2008 that Veney discovered why her father had never been in touch with her: He had left the family because he was gay and, at the insistence of his wife, had agreed to sever all communication with both of his daughters.
“To discover 49 years later that my mom was the reason I never had an opportunity to have a relationship with my father was heartbreaking,” Veney writes. “As upset as I was with my mom about this family secret, I also knew that my mom and I would never be able to have a conversation about it. My mom understands so little about the complex … even commonplace occurrences of daily living, that I'd never consider further complicating her life by venting my anger, treating her badly, or withholding my love.”
Those words, more than halfway through “Being My Mom's Mom,” form the central lesson that Veney conveys to caregivers who are on the same journey as hers: Focus on the love you have for the person with dementia. It helps to keep the grief of seeing that person's memory fade from becoming completely overwhelming.
No past, no future
It's a surprising benefit that Veney has discovered, an opportunity to let go of pain and live in the moment, because for those afflicted with dementia, there is no past and no future.
When Veney's older sister, Renee, died a few years ago, as a result of multiple sclerosis, her mother never had to find out that she'd lost a child.
“I wrestled a lot with that decision not to tell her,” Veney says, “but in the end it would have been very complicated to explain to her that she'd lost a daughter when she couldn't even remember Renee anymore.”
Veney and her husband work hard to create positive experiences for Woodward, even though she simply sees them as the “nice people” who pick her up for outings to the doctor, for lunch and for visits to family and friends.
Still, unexpected challenges arise, such as when her mother actually couldn't remember how to sit down in the car, creating a close-to-tears situation for both women.
“I was just so frustrated,” Veney says. “I couldn't figure out how to explain to her how to sit down. It didn't occur to me to just demonstrate it, the way you might with a child.”
Sharing wisdom
Veney's failure to immediately think of taking a child-friendly approach may have a lot to do with remembering that a person with dementia is an adult who deserves to be treated as such. (This is an imperative that she touches on frequently in her book.)
“I try to give her options,” she says, on simple decisions, such as which clothes to wear or which dessert to order at a restaurant, just so her mom can feel as though she has some control over her choices.
At the same time, she's cognizant of the inescapable parallels between adults with dementia and children: Both thrive on routine, and it's up to those who care for them to be aware of their limitations.
“I've witnessed really embarrassing situations, people screaming at their parents,” Veney says. “I see it often in the parking lot outside the doctor's office, someone yelling, 'Hurry up, Mom, you're making us late for your appointment,' and I'm just thinking, 'You know your mom can't move that fast. Why didn't you leave 15 minutes earlier?'”
While Veney is critical of those who are impatient with their ailing parents, she acknowledges that caring for them is not easy, saying, “I feel like I use all of my patience with my mom, which means I don't have much left for the rest of my family sometimes. I have to really catch myself.”
It's exactly that experience that has driven her over the past few years, appearing at some 250 events where she tries to give hope to families facing an uncertain future. She travels across the country to health fairs, churches and assisted-living facilities where she talks not only about living with a loved one's dementia diagnosis but also about the practical aspects of elder care.
Recently, after a speaking engagement, she came away unsure whether she'd made any impact. So she was thrilled to receive an email a few days later from a woman who said Veney's presentation had given her a new lease on life as a caregiver for her mom.
“I'm never really sure if I've helped anyone,” Veney says. “I'm overjoyed that I made a difference for her that day.”