Editor’s note: This is the first article in a Next Avenue series by Dan Browning about his family’s experience coping with his wife’s frontotemporal dementia (FTD). Preview the entire series here.
”Dad, something’s wrong with Mom. We have to do something.”
My daughter Elsa, was 15 when she uttered those words four years ago. Her mother, Liz, was 48. I assured Elsa that her mother was fine, that she was just going through menopause and maybe a bit of a mid-life crisis.
But privately, it was hard to dismiss Liz’s behaviors, which grew more bizarre by the day. Her snide comments about Elsa adoring me and shunning her. Her bitterness over the amount of time I spent working or practicing martial arts. Her explosive confrontations with musicians who she believed, rightly or wrongly, had disrespected her. Her conviction that a kindly neighbor was a Peeping Tom.
I couldn’t fathom what was going on. Liz had always leaned toward the dramatic. She could swear like a sailor. And no slight was too small for her to turn into a grudge. A close friend of hers once said she seemed to have “emotional Tourette’s” because of her periodic eruptions.
But Liz revered her children. Even after Elsa reached her early teens they would snuggle on the couch, with Liz reading Harry Potter or Nancy Drew books aloud for hours. Liz successfully took on the state of Minnesota and our local school district to defend the rights of our son, Nathan, who had been diagnosed at age 2 with autism spectrum disorder.
And she protected me, too. She saved us thousands of dollars by reading every last line of every document when we bought our home, challenging the closing agent on one undisclosed fee after another.
Yet in 2011, Liz seemed to turn on all of us. She didn’t lift a finger to prepare for Nathan’s high school graduation party. She refused Elsa a ride to an academic award ceremony, telling her to ride with me, her “favorite.” She complained to nearly everyone about our lack of intimacy but seemed to recoil at my touch. She spent all of her free time — and unbeknownst to me, about $12,000 — recording a CD of her original music, “Finally!” (In retrospect, I’m grateful that she did such a fine job.)
No Memory of the Family Favorites
Our family began to disintegrate. The bickering ground us down. After she finished her CD at the age of 50, Liz began sleeping once she returned home from her part-time job as an accounting clerk for a steel company. She quietly stopped doing any household chores other than cooking dinner.
Strangely, she seemed to have no memory of the family favorites, foods that she’d made scores of times. She began broiling chicken breasts several times a week, burning them half the time, undercooking them the remainder. Nathan admirably defended his mother. Elsa stopped eating meat. Liz hardly touched the food and dropped 15 pounds from her normally slim frame. I drank more.
I began to think that my long hours at work and teaching martial arts had made Liz miserable, and that she was trying to get me to divorce her. I suggested marriage counseling for nearly a year before she finally agreed, in the spring of 2012, to see our son’s counselor, Gary Steele. By then I was past reconciliation. I didn’t say it, but I wanted out. I was just hoping to hang on one more year until Elsa graduated from high schooI.
If Not Depression, Then What?
We slogged through the counseling, with Liz showing little interest in it. Then, right before her family’s 2012 reunion in July, Liz got fired from her accounting job. Her boss said Liz was a beloved employee, but she’d been swearing a lot at work and fighting with coworkers. She refused to make collection calls, which was always part of her duties, and could no longer balance the books, her primary function. She didn’t respond to repeated warnings over the course of a year.
I was convinced that Liz was clinically depressed and demanded that she get a full medical workup. Surprisingly, Liz’s doctor said she wasn’t depressed. It didn’t seem possible.
Everything changed at a counseling session a few weeks later. Liz stared blankly at Gary or changed the subject whenever he asked her a direct question. I insisted that she must be depressed.
“No,” Gary said, looking worried. “I think she’s having a language-processing problem.”
My heart sunk. I thought she must have a brain tumor, like a former boss of mine whose behavior had changed abruptly.
Liz agreed to let Gary speak with her doctor but resisted the idea of a neurological workup. To help convince Liz to go, I turned to her longtime friend and fellow musician, Dee Miller, asking her to talk with Liz. Dee kept nudging Liz to agree to tests, if only to prove to me that there was nothing wrong.
“It’s Not a Brain Tumor”
In August 2012, Liz agreed. Her doctor referred her to geriatric psychiatrist Dr. Rebecca Rossom. Liz was so angry at me that the doctor asked me to wait outside while she conducted a preliminary interview. Two hours later, Dr. Rossom ordered a full neuro-psychiatric evaluation, a battery of blood tests and an MRI scan of her brain.
A couple of days later, Liz got a call from Dr. Rossom.
“It’s not a brain tumor,” Liz spat into the phone, slamming down the receiver.
That answer would have to wait a week, until Liz and I and her sister Margaret could meet with Dr. Rossom in person.
“You’re Going to Need Help”
“Frontotemporal dementia,” Dr. Rossom said. Margaret and I looked at each other. “What’s that? What’s the treatment?” I asked.
Dr. Rossom shook her head. “It’s a form of dementia. There’s a genetic component, but based on Liz’s family history, it appears that her disease resulted from a random mutation. There’s no cure. No effective treatment, other than making the person as comfortable as possible,” she said.
Then she told me something I didn’t understand at the time: Start lining up services as soon as possible.
I didn’t get it. What services?
The average lifespan after the onset of FTD symptoms is eight to 10 years, Dr. Rossom explained. No one can predict the rate of decline. And the disease can be financially devastating.
“You’re going to need help,” she said. She gave me a copy of the medical report along with some materials listing social service agencies and nonprofit groups that could provide more information.
What she meant by help is what I’ve come to understand over the past year and a half. Help safeguarding our home. Help finding daycare for a now 52-year-old woman who needs 24-hour oversight but remains as active as a toddler. Help protecting an outgoing woman whose dementia has made her a danger to herself. Help finding money to cover her care. Help so that our children could understand their mother’s initial hostility and worsening behaviors. And help with endless hours of paperwork as I try to do a demanding job and care for Liz, my disabled son and a daughter starting college.
CONTINUE READING DAN’S STORY: The Dementia That Steals More Than Memory
Next Avenue Editors Also Recommend:
- Cost of Dementia Care, Already High, Will Only Soar
- The U.S. vs. Alzheimer’s: The Fight Heats Up
- How One Alzheimer’s Caregiver Copes
- Caregivers for People With Dementia Need a Break
Next Avenue brings you stories that are inspiring and change lives. We know that because we hear it from our readers every single day. One reader says,
"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."
Your generous donation will help us continue to bring you the information you care about. What story will you help make possible?