Dementia, a Disease of the Family
This mom's diagnosis led her daughter to feel guilty for not being home
Editor's note: This is the ninth 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.
In the two months that I’ve been writing about my wife’s struggles with a fatal brain-wasting disease in her 50s, I’ve heard from a number of people across the country with family members who were afflicted with the same or similar disorders. It’s been heartrending and enlightening.
Kaylin Hibbing, a young woman who’s been studying health sciences at the University of Minnesota in Rochester, recently sent me an email and mentioned that her father was diagnosed last March with the same disorder as my wife — frontotemporal dementia with motor neuron disease (FTD-MND). Like my wife, singer-songwriter Liz Cummings Browning, her dad was relatively young: just 53.
“I feel like we’ve been leading parallel lives,” she wrote. “FTD is just as much a disease to the family as it is to the individual affected.”
That prompted me to ask our two children to share their experiences. Nathan, 21, declined to comment publicly. He shared his thoughts privately, and said with some difficulty that he’d make public comments only after his mother passes away. He explained his reasons, and they are well thought out. I respect his decision.
Elsa, 19, is a freshman studying pre-med and physics at the University of Minnesota in Morris, a dime-sized town 165 miles from home. She was the first to notice her mother’s changing behaviors. It happened during her sophomore year in high school when Liz accompanied her school choir as a chaperone to St. Louis. Elsa said her mom just seemed “a little weird” on the 2011 trip. In the next year, her friends mentioned that they didn’t like riding with Liz in her van. It was a mess, and she’d stuck dryer sheets into the vents to mask the odor of her growing smoking habit.
“It certainly looked bad,” Elsa said.
Elsa’s friends noticed that Liz was repeating herself, a trait known as perseverative speech, typical of autism and the early stages of dementia. A close friend of Elsa’s remarked that Liz freaked him out by waving excitedly to him as he walked toward our bathroom. Elsa, embarrassed, asked her friends over less often. She and Nathan talked about Liz’s increasing consumption of alcohol, mostly Corona beer. They worried about it, she said.
Elsa recalls Nathan begging his mother not to go out one night after she had a couple of beers, but Liz stormed off defiantly. Then on Jan. 6, 2012, Elsa called me at work, frantic. Her mom had driven seven miles on a flat tire, grinding down the wheel, wrecking the antilock brakes on our van and leaving a long gouge from the street to our driveway. Elsa still keeps a photo of the wheel in her phone.
When I asked about how her relationship with her mother changed, Elsa recalled her mom making “hurtful comments” about her closeness to me. Elsa said she had blocked much of that out since learning that the disease was responsible, not the mom who insisted on being home when she arrived after school, kept her going to piano lessons for years and read aloud to her even after she had entered high school.
“It’s been so ridiculous. You keep thinking, OK, I’ve been hit with the worst, and then more comes,” Elsa said. Asked what she’s learned from her mother’s struggles, Elsa said, “It doesn’t matter what you do. Just because you’re a good person, you can still be hit with bad things.”
'The Relationship I Don't Get to Have'
One particularly bad moment came during the early spring of 2012, when Liz drove Elsa to Northfield, Minn., for a tour of Carleton College. Elsa was on edge because her mother seemed distracted, and drifted along the highway. At the school, Liz wandered away from the group tour.
“It was very nervewracking. This is a really prestigious school I’m trying to get into,” Elsa said. “At the time, yeah, I was really mad at her for just going off and doing who knows what.”
After Liz’s diagnosis in August 2012, Elsa realized that her mom was just sick.
“It’s not her fault. I suppose I’m mad at me for not knowing, because we react differently based on if someone’s sick or if they’re well,” she said.
Elsa has a friend who’s close to her own mother, who everyone thinks is “hilarious.”
“This is the sort of friendship that I don’t get to have,” she said. “Not that I didn’t have it, but I don’t have it anymore.”
Feeling Guilty for Leaving
Elsa said she sealed off her distress to get through high school and head off to college. She felt guilty about leaving the family under such duress, however.
“I considered coming back [home],” Elsa said. “I still feel bad because I just left you all with everything — you and Nathan and [Aunt] Margaret. Who does that? Who just leaves? Apparently, I do,” she said. On the other hand, she said, “I don’t know if it would do any good to be back or if it would be worse.”
I assured her the best thing to do was to stay in school and build her own life. That’s what her mom and I want for her. There’s nothing she or anyone else can do to save her mother. Now that Liz is in hospice care, we have everything lined up to make her comfortable, I said.
Still, Elsa worries that she’s being selfish. She recently was offered a chance to apply for a job taking care of older, sick people in Morris, a job she says she would have jumped at in the past. Yet she couldn’t get herself to fill out the application.
“Why would I take care of people here?” Elsa asked. “Why would I leave my mother, who’s ill, and go help someone else who’s ill?”
Finding Support Among Peers
I don’t know if my words of reassurance resonated with Elsa or not. So I passed along the name and contact information of Katy Bryant, a 28-year-old California woman who has been through the same trials. Katy reached out to me after reading my stories about FTD on Next Avenue and in the Star Tribune.
Her father, Stu Bryant, had the same diagnosis as Liz. He was a larger-than-life professional baseball coach turned pro golfer who died about three years after his diagnosis.
Katy’s parents were on the verge of divorce when Katy realized that her dad was sick and convinced her mom to have him evaluated. She’d just been admitted to a master’s program in social work, and her dad’s doctors at the University of California in Los Angeles told her to stick it out. Moving back home from northern California to care for him would do no good, they said.
“It was a battle. It was very hard doing an internship and then going to school and then coming home [periodically] to see the changes,” Katy said.
She felt helpless. “You know, you’re technically an adult. You’re on your own. You’re in college. You’re independent. But you’re not independent. I still wanted my parents’ approval,” Katy said.
She remembered calling her dad to boast that she’d received a major mental health award from a member of Congress. But all her dad could say was, “Was there cake?”
“My mother was very congratulatory, but what people don’t understand about these diseases, like Alzheimer’s and FTD, is that you lose both parents,” Katy said. Her mother, as caregiver, was utterly consumed with her responsibility for her sick husband. “And that’s a very bitter pill to swallow when you’re in your 20s,” Katy said.
She urged me to pass along her contact information to Elsa. Katy said it helps to have peers to talk to. “It’s nice not to be the anomaly in the group,” she said.
Katy remembered her friends complaining about silly fights with their parents and declaring that they weren’t going to speak to them. “I’m like, ‘Are you kidding me? Like, I’d give my right arm just to be able to have one conversation with my dad again.' And it’s hard not to be resentful against your friends for that.”
Katy said she found a couple of peers on Facebook, which worked better for her than live support groups because her schedule in school and work were so time consuming.
“Online was great because I found these two people who were in the same exact situation with me and I could actually tell them what was going on. And even though I probably have the best friends in the whole entire world, that is something I really want to be able to communicate to your daughter, that there is something special about being able to text or to call or to email someone who knows exactly what you’re talking about. And you’re able to say, my mom’s experiencing X, Y and Z, and I have to go home for the weekend and I’m, fill in the blank: I am resentful. I’m scared. I’m sad. I’m filled with anxiety,” Katy said.
“You know, ‘How did you do it? How did you make it through it?’ You know, ‘I’m also worried about doing this in the middle of finals,’” Katy said.
I told Elsa about Katy’s offer to help. She said she might reach out. She said it scares her to think about FTD and the possibility that she might inherit it, despite her mom’s doctors’ assurances that it’s highly unlikely.
“It’s pretty bottled up,” Elsa said. “I’m 19. It’s a waste of my life to worry about it. It’s sort of just better to live with an optimistic view,” she said. “Otherwise, life’s just too sad.”