Learning to live and love in spite of a personality-robbing disease
September 28, 2012By Carolyn Beeler
Photos by Emma Lee
About seven years ago, Diane Fehon started noticing that her husband Bill Fehon was acting differently — forgetful and childish.
"We would take three mile walks," Diane said. "Every time he saw a dog he was just like a little kid with the dog. He was just overly excited for a man in his mid-fifties."
One of the couple's sons Jason Fehon noticed the strange behavior too. He had recently bought what he called the 'king of all fixer-uppers' nearby, with the intention of having his dad help him rebuild the house.
Jason asked Bill, who had built the house Jason and his four brothers grew up in, how to hang dry wall.
"And he said, 'I...I don't know,'" Jason said. "I was like, 'Dad, you put drywall in our entire house!'"
A big change with small beginnings
The story of Bill and Diane's meeting would fit nicely into a tender teen novel. It was the early seventies and she was a cheerleader, and he a football player at the Academy of the New Church, a private Christian boarding school in Bryn Athyn, Pa.
The went off to college, got married, and moved back to Bryn Athyn when Bill got a job teaching high school science at that same boarding school where they'd met. He built the couple's house on a piece of property not far from the school. Old home videos show the active family life of a father of five sons: Bill sanding down rafters of a living room addition while Diane carts a toddler around on her hip. Lanky teenage boys showing off snared fish at Dad's prodding on trips to the Northeast.
The changes in behavior Diane noticed didn't start happening until 2005, when their five sons were grown. At first they were just small things --- confusion and fear on a trip abroad and uncharacteristically unkind words for his mother. But Diane couldn't shake the feeling that Bill's behavior was a sign of something bigger, something very wrong.
She thought about approaching his boss, the principal of the high school where he taught, about what she noticed.
"But, I just kept thinking, 'What wife goes to their husband's boss and says 'have you noticed there are things wrong with my husband?" Diane remembers. "You just don't do that."
For two years, with growing alarm, Diane kept the fact of her newly disintegrating marriage, and her rapidly changing husband, to herself.
"I felt like my life, our lives were just imploding," Diane said. "I knew something was wrong and he didn't."
From husband to 'man-child'
Eventually, the principal approached Diane and after some pleading, she got Bill to go to their family physician, then to a neurologist. After a battery of tests and brain scans, finally, a diagnosis: Frontotemporal degeneration (FTD).
"I actually went, 'That's great, now we know what it is; I can do this, we know what it is!'" Fehon said, laughing in recalling her relief. She soon realized diagnosis was just the first step in a long road toward acceptance.
FTD causes the front part of the brain, the part that controls behavior and personality, to atrophy, or shrink. The Association for Frontotemporal Degeneration estimates 50,000 to 60,000 Americans have the disease, which is often mis-diagnosed as Alzheimer's but typically sets in much earlier, in one's mid-fifties or early sixties. The degenerative disease exhibits in one of two main ways: either with a gradual loss of language or significant personality changes and inappropriate and compulsive behavior.
Bill Fehon has the latter form. He interrupts constantly, randomly breaks out into song during conversation, and repeats the same jokes over and over. He has a short attention span and craves apples, bananas, and Tastykakes so often Diane has to hide them. He also has short-term memory loss, a less common symptom, according to his neurologist and FTD expert Dr. Murray Grossman at the University of Pennsylvania.
At age 58, three years after diagnosis, Bill looks like a fit, healthy middle-aged man. He has a full head of brown hair and smile that is quick to appear. But his personality has changed completely. A founder of the United Bow Hunters of Pennsylvania and adept handyman, friends are quick to describe the old Bill as 'capable'. Now, Diane posts reminders in the bathroom for him to wash his hands and affectionately calls her husband her 'man child'.
For now, Bill can stay home alone while Diane works at a museum nearby, though she comes home from work for lunch or schedules a friend to visit on most days.
Dreams torn asunder
Clinical psychologist Barry Jacobs said one of the hardest things about those finding themselves in Bill and Diane's situation is that it transforms a relationship of equals into something akin to a parent-child relationship, where one partner has to make all the decisions.
"One of the things that I work on is trying to minimize that skew, that gap between the parent and child to whatever degree is possible," said Jacobs. He who works with caregivers and the seriously ill at the Crozer-Keystone Health System in Delaware Co., Pa., and wrote a book called "The Emotional Survival Guide for Caregivers."
"We have to have the well spouse sometimes using her judgment in place of her husband's, whose judgment is now impaired, but we don't want him to feel belittled, we don't want her to take on a sanctimonious tone in order to make her point," Jacobs said. "It becomes extraordinarily difficult."
Jacobs, himself an adult caregiver for a parent, said it is much harder to become a caregiver for a spouse. An example: adult children caring for parents are twice as likely as average to suffer from depression. Spousal caregivers? Six times more likely, he said.
"When you marry someone this is your life partner, and your dreams are wrapped up in this person, in this person's dreams, and when an illness or some other adversity occurs, those dreams have really been torn asunder," Jacobs said.
FTD is particularly devastating because it strikes so young. Bll was 51 when he started showing symptoms. Yet Diane's twin sister Debra Lermitte said because FTD is relatively unknown, everyone compares Debra and Bill's situation to an experience of caring for an elderly grandmother or a great aunt with dementia.
"They're missing the point that this is Diane's husband, and they were supposed to spend this time in his retirement together," Lermitte said. "Now she's his caretaker. And to watch her be loving to him, even though her role has reversed, has changed, is just amazing. "
Accepting the end of a marriage
Diane said she misses real conversation and the hugs and kisses that Bill used to be quick to provide.
"It went from a partnership to me handling absolutely everything," Fehon said. "It was like being in a ditch that has muddy walls and I have to claw my way out and carry him up on my back."
But she said that has changed. Years into Bill's sickness, Diane said she realized she really did have to bide by that old adage of taking care of herself.
She started going to counseling and a support group, signed up for an exercise class with a trainer, and bought a cat for companionship. She rented out some of the kids' old rooms to a young mother.
"Because Bill's often like a child, we can commiserate about children," Fehon said.
And most importantly, she said, she accepted that the man she married was never coming back.
"Part of clawing my way out was accepting that our marriage was over in one sense," Fehon said. "We had to have a different relationship. Where I am now, is that I've come to accept it. I wouldn't say embrace it, but certainly accept it."
Their son Jason, who lives nearest to his parents and helps his mom with a barbeque sauce business they started to honor Bill, seems to have let go as well.
"It's strange to say I sort of live my life like I don't have a father anymore, because I really don't. At least mentally I don't," Jason Fehon said.
Caregiving as 'enriching'
The average FTD patient lives seven years after diagnosis, according to Dr. Murray Grossman, the Penn FTD expert. But there is a huge variation from person to person. Diane is saving up and planning ahead for the day when she cannot care for Bill herself anymore.
Psychologist Barry Jacobs said he has one piece of advice for his care-giving clients, given all the difficulties they are going to face -- that is for them to look back on their care-giving experience and say they did the very best they could.
"That may mean I did the very best that I could and put my husband in a nursing home, or I did the very best that I could and I kept him by my side till the day he died," Jacobs said. "When I see folks being able to do that, in retrospect, providing care to a loved one like this is a tremendously meaningful and enriching experience, that makes them feel like they're better people and affects the way they view life thereafter."