Photo Credit: Courtesy of Tracy Mobley
Even when her husband remarked that she was forgetting decisions she'd made, she says, “I blew it off because I was a full-time mom and full-time wife, taking care of all the necessities, paying the bills and doing the grocery shopping.”
Then one day eight years ago Mobley, now 46, didn’t recognize the family dog at her home in Elkland, Missouri. “I woke up one morning and I stared and I thought, ‘why is he here?’” She asked her son, Austin, why there was a dog in their backyard. When she realized what had happened, she set up an appointment with a doctor.
Mobley was initially diagnosed with Early-onset Alzheimer’s (EOAD), a kind of aggressive dementia that affects people younger than 65. But several years later, her diagnosis was changed to frontal lobe dementia, after medications for EOAD didn’t improve her symptoms.
Mobley’s story is not uncommon. Frontal lobe dementia, also referred to as frontotemporal dementia, is often misdiagnosed because, like Alzheimer’s disease, it is characterized by atrophy of the brain and a progressive loss of brain function. However, frontal lobe dementia leads to a decline mainly in behavior, language and movement, and less to the memory loss that is a hallmark of Alzheimer's. While there are over five million people in the U.S. living with Alzheimer’s, the number of people with frontal lobe dementia is unknown because of the challenge of diagnosing it, says Susan Dickinson, executive director of the Association for Frontotemporal Dementias.
It took awhile for Mobley to be properly diagnosed. In the beginning, Mobley was not alone in thinking her forgetfulness and confusion were due to stress. She was given Prozac to treat depression but her symptoms progressed. She sought out different doctors and eventually landed at the Mayo Clinic where she was told she had organic brain disease, now called encephalopathy, a term used to refer to any disease of the brain that affects function.
When she returned home, Mobley started seeing a neurologist who changed her diagnosis to EOAD. Mobley’s symptoms, however, were not limited to memory loss. She had aggressive outbursts and got lost driving to familiar locations. After witnessing these changes, and how different medications affected her, Mobley’s doctor finally changed her diagnosis to frontal lobe dementia.
“I wasn’t scared. I was mad because we weren’t getting anywhere,” Mobley says of her impatience to get the right diagnosis. “When he told me, I was relieved.”
Learning to Cope at a Young Age
Dealing with the effects of dementia poses a unique challenge to younger people who might be at the height of their careers or raising families. “Many of these people are still in the active years of parenting, so it’s a lot more complicated than for an older person,” says Dickinson.
Mobley, who wrote a book on her experience, Young Hope: The Broken Road, found support from her local Alzheimer’s Association chapter and started a free overnight camp in 2008 for kids with relatives who have Alzheimer’s or other forms of dementia. The camp is called Austin’s Camp Building Bridges, named for her 15-year-old son.
“Camp came about through my son. I realized one day how lost and angry he was, and I thought, there must be something we can do for kids so they know they’re not alone when dealing with this disease,” she says. In addition to regular camp activities, like arts and crafts, campers attend sessions led by the Alzheimer’s Association about coping with Alzheimer’s and dementia.
Mobley says her mother and siblings are in denial about her diagnosis, so her husband Allen and her son have been her main sources of comfort. “He’s my sunlight,” she says of her son, Austin. “I try to never be down because of him, but when I do feel down, he and I have a little interaction that kind of lifts me up, and that makes me feel better.”
Mobley says the dementia is progressing faster now and she’ll go into an assisted living facility when her family can no longer care for her. Until then, she says, “You have two choices: You can sit down and quit or you can continue to go on. I choose to fight for each day.”
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