Editor’s Note: This is the first of a five-part series highlighting the disease of dementia and the toll it can take on families. The information presented in this project was created as part of a community partnership between the Tyler Morning Telegraph and the Alzheimer’s Alliance of Smith County for the purpose of educating people about the disease and where to go for help.
Tyler attorney Don Kent spends most days reviewing case files and helping his wife prepare for court.
He’s part of the Kent, Anderson, Bush, Frost and Metcalf law firm and married to one of Smith County’s most versatile and recognizable court figures, retired State District Judge Cynthia Kent.
For most of his career, Kent, 65, specialized in defending product liability cases, business and medical malpractice suits, sifting through medical books and research to glean important findings for clients.
Ever the student, Kent enjoyed professional success, but also enormous personal satisfaction, as there was always something new to learn and investigate.
But in a twist of fate, there is a new chapter unfolding in Kent’s life, not as an observer of medicine but as a patient, on the opposite side of the stethoscope, as someone newly diagnosed with dementia.
It’s a journey that started several months ago after he began experiencing symptoms unusual for him: memory lapses, a loss of consciousness and personality changes.
Doctors ultimately linked the symptoms to Lewey body dementia, a little-known type of brain ailment that affects not just someone’s cognitive abilities, but other body systems as well, such as mood and senses.
It was a shocking diagnosis for a man whose brain is a sponge for knowledge.
“Nothing treats the disease,” he said. “I’ve got a non-curable, non-treatable brain disease that is going to leave me demented at some point - that’s a very staggering thing to learn.”
The Kent family is not alone in this unfamiliar life journey.
At the local level, an estimated 4,000 people in Smith County are living with Alzheimer’s disease, but thousands more are affected when you count those caring for them.
There are about 350,000 cases in the Lone Star State and about 5 million nationally, the latter number expected to rise to about 16 million by 2050.
Local experts expect the next few years to bring a sharp increase in the number of known cases in this state alone.
“In Texas, it’s estimated to increase 40 percent by 2025, that’s just seven years away,” said Stephanie Taylor, executive director for the Alzheimer’s Alliance of Smith County. “The numbers are terrifying. … I think people really underestimate the severity of the issue.”
The Alliance offers help, connecting caregivers to services ranging from support groups and respite care to transitional assistance into specialized memory care communities, thanks largely to local donors.
“Our mission is to walk along with anyone in our community impacted by dementia,” Ms. Taylor said. “We want people to utilize our service and realize they are not alone.”
AN ENDURING LOVE
The Kents agreed to share this new chapter in their lives with the hope of educating others about the disease and the availability of resources, for patients and caregiver.
The pair long enjoyed high profile law careers, but privately they are soul mates and best friends. Kent plans on retiring at the end of the year; his wife plans to keep working.
Not a minute of their time together is wasted, it seems, as the couple works to maintain a sense of normalcy in their lives - traveling, spending time with family, doting on the grandchildren.
They attend court, exercise and entertain friends together.
The disease is a constant in their lives, but faith keeps them focused on positives.
“It’s a walk of faith,” she said. “It’s not the walk we planned.”
The couple met in college, while attending Baylor University, and Kent knew the moment he saw the pretty young woman walk in the school’s debate office that she was a keeper. “My partner leaned over and said, ‘Who’s that?’ I said, ‘I don’t know, but I’m going to marry her.’”
On the surface, it seemed an unlikely match - she is Catholic and loves football, he’s a Baptist and a baseball fanatic.
Forty-two years later, their love and Kent’s baseball card collection continues to grow.
The unlikely prediction about choosing a wife seems consistent with many things about Kent, who knew from the sixth grade he wanted to be an attorney or maybe a politician.
A childhood fascination with the 1950s-era television series Perry Mason likely factored in his choice of careers, he said, but whatever the motivation, it stuck.
He dabbled in personal injury law before migrating in the late 1980s to medical malpractice, defending everyone from surgeons to dermatologists.
Politics had a place in his life for a while, but it couldn’t compare to the mix of practicing law and learning about medicine.
“I really do enjoy medicine,” he said. “There was always something to do.”
Changes in Kent’s life largely emerged this year, although there were signs years earlier that were lost amid the hustle bustle of busy careers.
He just wasn’t himself.
And soon, his family was taking notice.
“I’ve always been a very mild-mannered person,” he said. “I’m actually more of an introvert, oddly enough, than an extrovert. I have a very, very slow temper and all of the sudden, I began to have a temper.”
The flashes of anger would manifest in different ways, shocking those around him.
“I don’t think I ever said a bad thing to anybody and all of the sudden, I was chewing out people, saying really bad and mean things to people,” he said. “That just wasn’t me.”
He was aware of the changes and struggled to restrain his emotions.
Other symptoms emerged as well.
His sense of taste changed and there were times it felt as though he were living in a fog.
Simple tasks, such as using the microwave, suddenly seemed foreign.
One day he passed out at a wedding, prompting a three-day stay in the hospital. A blackout spell and battery of tests soon followed.
His mind went completely blank one day, almost like a television screen without a picture.
Doctors detected some cardiac problems and addressed the issues with surgery and medication, but still, things weren’t right.
Neurological assessments did not point to Alzheimer’s and his mind appeared to be functioning within normal levels.
“I knew I wasn’t normal for me and my wife knew I wasn’t normal,” he said. “My wife knew I wasn’t the person she married, not the personality.”
But there were no answers to explain how a brilliant mind could somehow forget how to heat a cup of coffee in the microwave.
Frustration over not knowing, or understanding, the person he was becoming bubbled to the surface.
Kent said he began to contemplate suicide so doctors sent him to the Mayo Clinic, where he was diagnosed with Lewy body dementia, something he’d never heard of, even though, through his work, he was familiar with Alzheimer’s.
“It came out of left field,” he said. “It stunned me that I could have something that I wouldn’t even know existed.”
Kent said he’s not keeping his diagnosis a secret because he wants people to know more about the various forms of dementia and its effects on society.
“(Alzheimer’s) is the most common form of dementia … but there are others, over 50 (different types)” and possibly more, he said.
Lewy body dementia is the second most common type of dementia, he said, but few people, including many in the medical profession, are aware of it.
In its early stages, it can be difficult to detect.
Just months before his diagnosis, for example, Kent studied up and effortlessly clenched his sommelier certificate, signifying his role as an expert in wine and food pairing.
“I can tell you right now that I don’t really have a memory issue,” he said. “My memory is fairly fine right now.”
To diagnose suspected cases of the disease, a patient submits to cognitive and psychological testing.
He or she is not compared to the normal population, but their individual IQ level.
Kent tested below his IQ level in specific areas, but above the normal population, alerting doctors to the possibility of an early form of Lewy body dementia.
Another telltale indicator of the disease is the presence of certain sleep disorders, such as REM that can cause people to act out their dreams.
Kent said he has disruptive sleep behaviors, namely that he’s being chased or engaging in a fight, and one time smacked his wife when she tried to wake him up.
He’s also started experiencing subtle changes in movement, which could be an early indication of Parkinson’s, common with his disease.
“My wife has noticed it, I’m much more clumsy than I used to be,” he said. “I have a little bit slowness of movement, but nothing clear enough to say, ‘Yes he has Parkinson’s,’ but I have some early signs of developing Parkinson’s and that’s a part of this disease as well.”
The fogginess is still around, too.
“Some days are microwave foggy days, some days his mind is totally blank, some days he’s pretty good,” Mrs. Kent said. “Everyone’s journey is different because everyone is different.”
Kent said he initially felt relief at the diagnosis because it explained so many of the changes happening in his life.
Mrs. Kent said she was also grateful for the diagnosis because it gave them the opportunity to sit down and discuss finances, talk with their children and make plans for the future.
“This is a God gift,” she said. “It’s been a blessing to know what’s going on and have a diagnosis.”
With a lighter workload, Kent spends hours each week researching his disease and the latest rounds of research.
He’s growing a small library of books to learn more about it and hasn’t ruled out the possibility of writing his own.
“He’s thirsty for the information, he’s always reading,” Mrs. Kent said. “It’s hard for me to read about it. I hate that he’s going to go through this … I don’t want him to have it.”
Kent said he intends to keep learning and telling others about the disease, so long as time allows.
“I have a disease that will kill me, assuming nothing else intervenes before then, and there’s nothing they can do to prevent it,” he said. “That’s not what she had in mind for our future … but we’re going to keep living our lives.”
TWITTER @ TMT _ Jacque