Editor’s note: This is the seventh 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.
As spring turned to summer last year, “sundowner syndrome” tightened its grip on my wife, Liz Cummings Browning, who had been diagnosed with a fatal brain-wasting disease called frontotemporal dementia (FTD) less than a year earlier. She was just 52 years old, and she just had to move.
I tried to keep up with her using several cell phone trackers, but either Liz would leave her phone at home or they didn’t work when I needed them.
Wandering 10 Miles Away
One day before I got off work at my newspaper job, Liz made it as far as a friend’s house, 10 miles away, by walking several miles and hopping a bus. I found her pacing out front with some guy hanging out of a pickup truck trying to get her to go away with him. He took off in a hurry when I pulled up. I knew I had to do something to occupy Liz before winter arrived in Minnesota.
But I also had two children to care for. My son, Nathan, 21, has Asperger syndrome and was about to enter a program where he’d live away from home in a dorm for six weeks. My daughter, Elsa, 19, was leaving for her freshman year of college at the University of Minnesota at Morris as a pre-med and physics major. And as if things weren’t hard enough, Liz’s mother was killed in a car wreck on the way to a family wedding just a week after the kids had started school last fall.
When Liz’s sister Margaret broke that news to her, Liz said, “I’m sorry for your loss,” then got up to play piano. We were stunned, but not surprised. FTD attacks the regions of the brain that govern judgment, persona and speech.
A Moment of Peace
A few days later, I uncharacteristically took a day off from work. The cascade of stress was just too much, and I needed some rest. Liz and I took a nap that afternoon and awoke face to face. We looked silently into one another’s eyes for a few moments, then Liz broke into her most beautiful smile and appeared utterly happy. The moment passed quickly. Tears welled in her eyes, and she said, “It’s too bad my mom died.” I nodded. Her green eyes sparkled in the twilight, then she turned her back to me and slept.
A few days later, we were on our way to Louisiana to bury her mother when Liz disappeared in the Dallas-Fort Worth International Airport during our layover. As we hunted for her, I grumbled that she was like a toddler. Nathan replied, “Yeah, a toddler who swears,” and we had a good laugh.
Police eventually found Liz outside the terminal, where she’d gone for a smoke. Liz had no plane ticket or boarding pass, and her cell phone was turned off. Airport security was gracious when she initially refused to raise her arms for a body search, and we eventually made our way to the funeral in Monroe, La.
Finding Day Care
When we returned to Minnesota, I got serious about finding Liz an adult day care program. After months of struggles, she was approved for financial assistance under one that Minnesota calls Community Alternatives for Disabled Individuals (CADI), which helps people under 65 qualify for Medicaid benefits to keep them out of more expensive nursing homes.
We were assigned a young social worker named Bree Zaffke, who would prove to be a fierce advocate. Liz didn’t exactly fit the criteria for a great many hours of care because they’re based more on physical limitations, like bathing and toileting. But Bree fought for Liz and got her approved for day care services, handicapped transportation and a personal care attendant to help around the house for three and a half hours a day. Margaret played that role initially, in between working her part-time waitressing job and caring for her young daughter at home.
In late September, Liz and I visited a program run by the venerable Amherst H. Wilder Foundation in St. Paul, Minn., which is known for its memory care. When the intake person there learned of Liz’s FTD diagnosis, however, she discouraged us, saying that people with FTD can be difficult to manage. She asked if we had a relative or a friend who could stay with Liz full-time. We didn’t, so Wilder agreed to give Liz a try.
Liz, who had played piano and sang as a volunteer at senior housing facilities for 20 years, thought she was going there to entertain “the old folks,” and she looked forward to going, but often became frustrated when she couldn’t leave at will.
FTD’s Prolonged Attack
Meanwhile, FTD continued its attack.
Liz was choking on her food, and her neurologist at HealthPartners, Dr. Michael Rosenbloom, ordered a “swallow test.” I watched her on a live X-ray as she drank liquids and ate foods of varying consistencies. Even I could see that she was unable to clear the foods from her throat with a single swallow. She’d clear some of the food, then struggle to choke down the rest. The condition is called dysphagia and is common among dementia patients in the later stages of the disorder.
If food or saliva gets into the lungs, it can lead to what’s called “aspiration pneumonia,” a leading cause of death for people with FTD.
I left the hospital with a recommendation that we buy an over-the-counter product to thicken liquids, which the speech therapist said might trigger a more complete swallow reflex. Liz tried it and said never again. I couldn’t blame her. There’s a dispute about whether thickening liquids does much good anyway.
At home, Liz choked so badly one time that she couldn’t get any air, and I had to perform the Heimlich maneuver. Wilder officials reminded me that paramedics wouldn’t honor a living will and gave us a special form, called “Provider Orders for Life Sustaining Treatment” (POLST), to relieve the emergency medical technicians of their duty to attempt life-saving procedures.
Kicked Out of Day Care
In mid-October, just as we thought things were going well, Wilder called a meeting to say that they wanted to boot Liz from their program. They said she was too active and didn’t fit in with the relatively sedate Alzheimer’s patients. They worried that she’d be mistaken for a staff member and might escape through the locked doors. She required too much redirection.
Dr. Rebecca Rossom, a geriatric psychiatrist with HealthPartners, told us that a nurse at Wilder had asked about medications to make Liz more manageable. Rossom said that would be inappropriate, and we agreed.
Bree, outraged that Wilder was throwing in the towel so soon, brought her supervisor to a meeting with Wilder to convince them to try harder. Wilder staff said they were sorry, but the agency had turned away six or seven FTD patients because they didn’t fit with their programming. They gave us a few weeks to find another program.
Margaret and I shopped for another facility but could find nothing suitable. Those willing to try to work with Liz either had no locked doors or no openings.
“She falls through the cracks,” Bree said.
Wilder agreed to try again, saying that Liz had settled down and that the other clients liked her. But that lasted just two more weeks; she’d have to go.
Bree got us a “temporary” authorization for personal care attendant care from 9 a.m. to 6 p.m., which covers Liz while I work. Bree said she’d have to get it reauthorized later, but she promised to do whatever she could.
Help From Outside
The reality and severity of Liz’s disease finally sunk in. Dee Miller, her good friend and fellow musician, organized a wonderful benefit concert that drew dozens of well-known Twin Cities musicians and a few hundred friends and fans from around the state. Liz gave out copies of her CD, Finally!, and danced for several hours before asking me to take her home. She was exhausted, but happy.
Margaret couldn’t do full-time personal care attendant work, but agreed to watch over Liz for seven hours over the weekends. It looked like we had no choice but to let a stranger into our home to take care of Liz during the week.
As a longtime investigative reporter, I knew that the agencies that provide personal care attendants can be hotbeds of fraud. They often hire people who can get no other jobs, and it’s not unusual for the “caregivers” to abuse or steal from their clients. We weren’t even offered a chance to conduct interviews.
One fall morning, Barbara Dekrahn, a short, sturdy Liberian woman with twin toddlers at home, pulled up in her 2001 Ford Expedition ready to start work. We eyed one another cautiously. I warned her that she drew a tough assignment and that she would probably spend much of her time chasing Liz down the street.
“OK,” Barbara said confidently. “Show me what would you like me to do.”
Are you dealing with an FTD diagnosis? The Association for Frontotemporal Degeneration (AFTD) can help. Visit its website at www.theaftd.org for information and resources. AFTD also offers a helpline (866-507-7222) and email support. Another good website is http://www.ftlda.org. The site’s founder, Terri Bratton, lost her brother to the disease.
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