'They Say I Got Dementia'

Editor's note: This is the third 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. 

It was 10 degrees and snowing outside on Jan. 30, 2013, when my wife Liz, her sister Margaret, and I began the 90-mile drive from the Twin Cities to the Mayo Clinic in Rochester, Minn. Liz had been diagnosed five months earlier with the behavioral variant of frontotemporal dementia (FTD), a devastating brain wasting disease. She was 51.

Margaret and I were convinced that the diagnosis was right. But we hoped that Liz would qualify for a drug trial that had shown encouraging results in Europe. To qualify, Mayo had to evaluate her, and Liz wanted a second opinion, regardless.

We arrived at Mayo early. Liz, a professional keyboardist and singer-songwriter, spotted a grand piano in the Gonda Building's atrium and made a beeline for it. People were huddled around it, though, so I convinced Liz to wait to play until after her appointment.

Soon, Liz, Margaret and I were escorted to a small room to wait for Dr. Daniel Drubach, a neuropsychiatrist from Argentina who got his medical degree in El Salvador and his specialty credentials at the University of Maryland in Baltimore. We were surprised when another doctor entered the room to evaluate Liz with a few memory and coordination tests.

Dr. Meredith Wicklund, a neurologist, explained that she was working as a fellow with Drubach. She gave Liz a memory test and Margaret and I each tried to answer the questions in our head as Liz was quizzed. I realized that Liz performed better than me, and felt encouraged.

After a while, though, Drubach came in and said he had reviewed the tests done earlier in the Twin Cities and concluded that there was little doubt about the diagnosis.

The good news was that we didn’t need to worry about our children getting FTD. There’s a genetically-transmitted mutation linked to the disease in up to 40 percent of cases, but because neither of Liz's parents exhibited dementia before they died at age 82, the likelihood of Liz having the genetic version was practically nil, Wicklund explained.

Drubach said it was possible that Liz would qualify to participate in a stage 3 trial of a drug made by TauRx Therapeutics, of Singapore. The drug TRx 0237 has shown promise in European trials as a way to slow the progression of the disease. (Trials began in the United States in August 2013, but Liz hasn't been called.)

Dr. Drubach asked Liz what she does all day, and we explained that she hangs out in the house playing the piano, and goes for periodic walks of one to six miles.

“You should keep playing piano. That’s very important,” said Drubach, an accomplished flamenco guitarist.

Then he dropped the bomb — the piece of news that would change our daily routines and radically curtail Liz’s independence.

“You must stop driving,” he said. “Right away." He said he knew of families that were financially ruined because a family member with dementia was involved in an accident.

Liz was devastated. She would never forgive the doctor. She noted that she had passed a driver’s test given to people with dementia; the examiner had said she couldn’t find a single thing to criticize. But that was months earlier, before the Christmas tree outing, when Liz narrowly missed injuring or killing us all in an accident.

In fact, Margaret and I had been increasingly worried about Liz being behind the wheel. She had gotten lost on a few recent trips. And our daughter Elsa said Liz had weaved on the highway during a two-hour college-scouting trip.

So although Liz would become essentially homebound,  and although it meant that I would take on responsibilities that had once been hers, I knew it had to be. I slipped a note to Wicklund asking her to send a letter to the state motor vehicles department to ensure that Liz’s license would be revoked.

Margaret and I left the doctors utterly deflated. But Liz seemed unfazed, and headed straight back to the atrium to play the grand piano. Passers-by beamed as she played Angie by The Rolling Stones and Nothing From Nothing by Billy Preston. One floor up, people stopped and leaned on a banister to listen.

Margaret and I embraced, both of us silently crying.

Several people in wheelchairs rolled up. After a few songs, Liz approached an ashen-faced man in a wheelchair who appeared to be an old biker. He had long gray hair and a beard, and wore loads of heavy silver jewelry. One of his legs was extended, stiff and motionless.

Liz smiled broadly, leaned closer to him and said: “They say I got dementia.”

The man looked squarely at her face and chuckled.

“I think you do,” he said. “What’s wrong with that?”

Margaret and I laughed, grateful for the distraction. Then we set out for the snowy ride home.

I would soon learn how hard it can be to take a car away from a person with dementia and would set a plan in place for getting help.