The Scariest Dementia Symptom

Editor's note: This is the sixth 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. 

Many years ago, my then-girlfriend and I went backpacking above Lake Louise in Banff, Canada. About midnight, we heard a stone turn. Then something brushed against our tent. It turned out to be a grizzly bear.

We had nowhere to go. We tried talking in low tones so as not to surprise the bear, as the guide books advised. We chanted. We prayed. But the bear decided to spend the night settled against my side of the tent. When it breathed, the tent wall moved in and out. Exhausted, we eventually fell asleep. Just before dawn, a porcupine ambled up and the bear took off.

Sleeping with a grizzly bear proved to me that sometimes, there’s just nothing you can do, and you can get used to just about anything.

It’s a lesson I haven’t forgotten as I’ve struggled to cope with my wife Liz’s diagnosis of frontotemporal dementia (FTD), a hideous, incurable brain wasting disease that typically strikes people between age 35 and 60. Initially, you flail against the disease. I think of the poem that Dylan Thomas wrote for his dying father, Do Not Go Gentle Into That Good Night. But at some point, you must make peace with fate.

Liz is a singer-songwriter and keyboardist. After her 52nd birthday in March 2013, I decided to make a special effort to get her out to more of her friends’ gigs. She enjoyed the outings, but tired quickly. At home, though, she played furiously on her 6-foot-9 Kawai grand piano.

It was one of her splurges before we learned about her disease. Experts warn that FTD can be financially devastating because it attacks the executive functions of the frontal lobe. That’s the area that says, “Wait a minute, we can’t afford a another grand piano before our daughter heads off to college.”

FTD leads to death, on average, after 10 years. But the studies show a wide standard deviation, which is why doctors say they can’t tell you how long you’ve got. In Liz’s case, things seemed to be changing fast.

For instance, Liz told me that she had tried to sing This Masquerade, a Leon Russell song she’d been performing for more than 20 years, but couldn’t remember the words unless she played piano at the same time. Musicians, including our daughter Elsa, shrugged when I told them this. “Muscle memory” unlocked the words for her, they said.

FTD has many disturbing symptoms. I’d read about them in books and blogs, grateful that at least Liz didn’t have this or that manifestation. Then, one by one, they’d make an appearance.

The paranoia began fairly early. Whenever Liz entered the house, she’d hold her purse up to cover the buttons on the lock’s keypad, frightened that someone might be watching. Such obsessions are easy to dismiss until you realize that the person with FTD is genuinely frightened.

Then came the hoarding. Liz had to have three half-gallons of soy milk, three boxes of her favorite cereal, three bottles of Irish Cream and three bags of chocolate-covered pretzels on hand at all times.

Then came every caretaker’s nightmare: wandering, a seemingly inevitable and sometimes deadly consequence of FTD and other dementias.

Liz hated that she could no longer drive and pleaded with me or her sister, Margaret Cummings, to take her on outings. When we wouldn’t or couldn’t, she’d set out on foot. Compulsive behavior is part of FTD, and Liz had several places she would regularly walk.

She’d go for a couple of miles and then call for a ride home. This usually began around 4 p.m. Afternoon wandering for those with dementia is so common that it’s earned the nickname “sundowner’s syndrome.” I often had to leave work early to chase her down.

On April 23, 2013, I got a frantic call from Margaret saying Liz had disappeared. Liz had told our son that she was going to a friend’s in Minneapolis and bolted. This wasn't one of her regular destinations. The temperature was in the mid-30s, with 3 inches of snow on the ground. Would she die of hypothermia?

Margaret began driving a likely route that Liz would walk to reach her friend's — then and still, Liz has an uncanny sense of direction. I called Liz's phone over and over again. Finally, she picked up, and stayed where I asked her to wait for me. She was six and a half miles from home — some four miles shy of her destination.

I knew then that I needed to step up my efforts to get her qualified for things like adult day care and public transportation for the disabled. She couldn’t safely be left alone anymore.

Here’s a tip for anyone in a situation like mine: If you don’t have an all-in-one printer/scanner/copier/fax machine, buy one. You’re going to need it.

It took me four months and more than $1,000 in legal expenses to get Liz through the obstacle course known as an application for public benefits. Many of the delays and expenses were entirely unnecessary.

The county worker handling our case had no experience with the type of Medicaid “waivers” we were applying for. The waivers exist in most states so the disabled can remain in the community rather than be confined to more expensive nursing homes.

Our county worker kept trying to apply the rules for “elderly waivers,” which differ substantially. She asked for documents to verify our income, vehicle ownership, mortgages, my retirement plans going back 30 years, 401(k) savings plans, health insurance, life insurance and bank records.

During this process, I discovered life insurance plans on my wife and daughter that my mother-in-law had purchased and that I had known nothing about. I tracked down records in several states, despite being told by our attorney that they weren’t required. And the county worker kept telling me Liz wouldn’t qualify because we had too many assets.

Ultimately, the county worker apologized and said she was mistaken. Most of the records weren’t needed after all. She approved our application, which would pay for adult day care and respite help.

But actually getting this assistance would prove hard. When told of Liz’s diagnosis, seasoned social workers grimaced and commented on how difficult it can be to manage people with frontotemporal dementia. Isn’t there someone who can stay with her at home, they asked, like a neighbor or a relative?

Sadly, no, I said.

I finally found a place that would give Liz a try, and to my utter surprise, Liz enjoyed going there. But it wouldn’t last.

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.