Baltimore caregiver sheds light on dementia through mother's diagnosis
BALTIMORE -- A new study shows that Baltimore City and Prince George's County in Maryland have among the highest prevalence of Alzheimer's disease in the country.
The Journal of Alzheimer's and Dementia ranks Baltimore second behind Miami, followed by Bronx County, N.Y., and Prince George's County.
Maryland, as a whole, is first, according to the study.
More than six million Americans are living with dementia, and the most common cause of dementia is Alzheimer's -- a progressive brain disease that results in the loss of brain cells and function.
Living with dementia
Glimmers of 71-year-old Yvonne Paige's sassy spirit still shines despite her Alzheimer's diagnosis.
"I like my activities, I like making wreaths, I make clothes, I read and I try to entertain myself," Paige said. "I love going to the market and going out. I always have to make sure I'm with someone, but everything really runs smoothly."
Paige needs round-the-clock care which can be challenging for her daughter and caretaker Christal Friedman-Johnson, who remembers when they found out about the disease.
"So, we talked to my mother on a Saturday, and on a Sunday, she didn't answer her phone, and then on Monday my aunt said she didn't answer the phone for her either and a cousin called and said she didn't answer the phone," Friedman-Johnson said.
Friedman-Johnson said she rushed to her mother's Baltimore apartment and found Paige on the floor.
"They opened the door for us, and my mom was on the floor," Friedman-Johnson said. "She didn't fall or have a stroke or anything, but she was on the floor and had been there for some time."
Friedman-Johnson described the moments as disorienting chaos.
"We had no idea," Friedman-Johnson said. "It was complete panic because at that moment she couldn't see, her voice was different, she wasn't able to get back up and she didn't know who we were."
Very quickly the entire family learned their once independent matriarch had dementia and would require full-time care.
"We just knew then everything was going to be different from here on out," Friedman-Johnson said.
Life of a caregiver
Friedman-Johnson spends her days tending to her mother with help from her sisters and family.
"So, when we come here, we immediately make sure we relieve her caregiver," Friedman-Johnson said. "We recently got help from the Department of Aging."
The caregivers are juggling Paige's daily chores while trying to find a work and home life balance. Friedman-Johnson said her family has been forced to confront the struggles head-on to make sure access and resources are available.
"In our community, we don't say or pay attention to the symptoms early on," Friedman-Johnson said. "We have a reason for everything, and to go to the doctors to say, this is what's happening, just doesn't happen."
As the disease advances, Friedman-Johnson tries not to reflect on the past or worry about the loss of awareness her mother will eventually experience.
"If somebody is a little forgetful, oh she just forgot, oh she is getting old or he's just crazy, or however they describe it, but there is never a conversation of this is what it is," Friedman-Johnson said.
Massey said taking care of a loved one is draining for the caregivers.
"You can't do it alone," Massey said. "This disease will consume you, financially, spiritually, mentally, and physically."
Meanwhile, Paige said she will hang onto those uplifting moments even when her family is at a breaking point.
"They love me, and they make sure that I'm 100% OK," Paige said. "And I harass them and make them laugh when they might be at their breaking point."
"It's a public health issue"
There is no cure for Alzheimer's, however, there is treatment available to ease some symptoms.
"Here in Maryland, it's a public health issue, nationwide it's a public health issue," said Megan Peters, the Director of Government Affairs for the Alzheimer's Association of Greater Maryland. "We have a growing older adult population, our loved ones are going to be impacted by this."
Marlyn Massey, the Diversity and Inclusion Manager for the Alzheimer's Association of Greater Maryland said the Black and brown community suffers from Alzheimer's disease 2 1/2 times more than white people.
She also said Alzheimer's disease is not a part of normal aging, which is what many believe.
"As a person ages, they think that's what's supposed to happen and that is so not true," Massey said. "When a person gets to the point where they can no longer take care of themselves and do their daily activities, that's the first sign right there."
The Alzheimer's Association has been working to support families navigating dementia care.
"In Baltimore City, where we do have the highest prevalence, we have had great support from (Maryland) Congressman (Kweisi) Mfume, from federal legislation as well, so how do we tie in our policy work with the local level?" Peters said.
