Sisters Tonia Carney-Scott and Donna Carney grew up sharing a room together and have been there for one another their entire lives.
The two have shared a lifetime of sisterly love and the memories that come along with being close. In the years since Donna’s diagnosis of early-onset Alzheimer’s, around 2015, their bond may have been tested, but it has never broken.
According to the Alzheimer’s Association website, Alzheimer’s, the most common cause of dementia, is a general term for memory loss and other cognitive abilities serious enough to interfere with daily life.
Tonia, who lives in Bellevue, described her sister before her diagnosis as a “free spirit” and a “fun person” to be around.
“(Donna) was a graphic design artist,” Tonia said. “She painted abstract, acrylic paintings. She also taught herself to play the guitar, piano, trumpet and a little bit of the saxophone. She loved using her hands, being very creative, and anything she didn’t know how to do she taught herself.”
Tonia admits that becoming a caregiver has its challenges, however she knows the sacrifice is worth it and has found support through a local chapter of the Alzheimer’s Association.
“I felt very alone when I heard about (Alzheimer’s) because I didn’t have anybody to talk to that was of the same ethnicity,” she said. “You’re not aware of these programs and activities until you start looking for help.”
An annual conference organized by the Alzheimer’s Association is where Tonia found peace in knowing she was surrounded by like-minded people who could relate to what she was going through.
“That conference allowed me to hear other people’s stories, see people that look like me who are needing help, and it centralized all the components and parts that will give me more help as I look forward.”
African Americans are at two times greater risk to develop Alzheimer’s, according to the Alzheimer’s Association 2019 Facts and Figures Report.
“Most studies indicate that older black/African Americans are about twice as likely to have Alzheimer’s or other dementias as older whites,” the report said. “Aside from the fact that 60% of all Alzheimer’s caregivers are women, at the age of 65, women have a 1 in 5 chance of developing Alzheimer’s compared with a 1 in 11 chance for men.”
Tonia said she found the statistics related to Alzheimer’s to be “disturbing.”
“You don’t really see your community acknowledging it as such,” she said. “In our community, I still haven’t really run into a lot of African Americans that talk about their family members being diagnosed. Our community is probably more private about that topic.”
Tonia admitted that when her sister first started showing the early signs of Alzheimer’s, she was in denial.
“I was one of them that didn’t believe it and didn’t know what the signs were to look for,” she said. “Don’t ignore it. Don’t pretend it’s something else or decide that you could fix it.”
Through a lot of prayer and developing compassion, Tonia has learned valuable insight that has helped her become better equipped to help her 56-year-old sister navigate her Alzheimer’s journey.
“I love my sister, and that’s what I equated compassion to,” she said. “I came to realize that I have to have patience, accept what I can’t change, receive grace and knowledge to continue to help her in ways that I never would have imagined.”