Stolen years

The Baltimore Sun

Kent Bugg came home from work one day a couple of years ago to learn that his wife, Dorothy Frohder, had abruptly retired from her job as a middle school guidance counselor.

The woman with four degrees realized that she just couldn't do the work anymore. She could no longer use her computer properly. There were other hints of something amiss. She had stopped keeping track of the money she was spending. She couldn't find the words for simple things.

On May 19, 2007, Frohder learned that what her husband had been attributing at times to a thyroid problem, at others to just plain aging, was really Alzheimer's disease. She was only 56 - seemingly too young to be diagnosed with this devastating illness of the very old.

Frohder, who lives in Anne Arundel County, is part of what appears to be a growing number of Americans with early-onset Alzheimer's, as many as 200,000 people in the United States, according to the Alzheimer's Association. Most people who get Alzheimer's are older than 65, with the majority in their 70s and 80s. But a small percentage are being diagnosed in the prime of their lives, when they have jobs and even young children.

"We're seeing more and more people in their 40s and especially in their 50s and early 60s with more serious memory problems than we've seen before. And many of them turn out to be Alzheimer's," said Dr. Constantine G. Lyketsos, chair of psychiatry at Johns Hopkins Bayview Medical Center.

He doesn't know why he is seeing more younger patients - it could be because baby boomers are pushing through this age group or there is a greater awareness of the disease. There aren't hard numbers, in part because Alzheimer's is notoriously difficult to identify, particularly in the middle-aged. It is not the first disease that comes to mind for this age group, and doctors often chalk up slips in memory to stress or depression. With Alzheimer's, Lyketsos points out, the brain slowly rots.

Doctors don't fully understand what causes Alzheimer's, early onset or otherwise, or why some people get it and others do not. Some genes have been linked to the disease. One dominant gene is believed to account for up to 10 percent of early-onset Alzheimer's, so if you have that gene, you will get the disease.

More is being learned, but there is no cure. Some medications may alleviate symptoms, but there is nothing to slow or stop progression of the illness, though not for lack of trying. Currently there are more than 100 medications in clinical trials.

Typically, Alzheimer's appears when people are in their mid- to late 70s and 80s. By age 85, there's a one in three chance of getting Alzheimer's disease, Lyketsos said. If you are between 65 and 75, there is a less than 1 percent chance. Early-onset Alzheimer's is even rarer. In Maryland, the Alzheimer's Association estimates there are just 3,200 people with early-onset Alzheimer's and another 5,000 or so with premature dementia.

"I've heard it said that Alzheimer's kills the brain of the patient and the heart of the family," said Carol Wynne, a nurse practitioner who runs an Alzheimer's Association support group for families dealing with early-onset disease. "It's very hard to watch - and as a society, we aren't set up to deal with them."

Kent Bugg and Dorothy Frohder met in 1982, on Halloween night when she was dressed in a homemade pumpkin costume and he was just dressed. He was a 22-year-old part-time college student and trucking company worker, and she was a 32-year-old high school guidance counselor in Georgia.

Despite their age difference, Bugg was drawn to care for her even back then, taking her out for a steak dinner on their first date. "I thought she was so skinny she needed meat on her bones," he recalled. Five years later they were married. They filled their lives with friends and family and work and travel. By day, Frohder became more and more accomplished at work, even spending a year running the guidance department for the Prince George's County schools. In her spare time, she would do exquisite needlepoint and crochet work.

Until she could do none of those things anymore.

In the spring of 2007, when she went to an annual checkup, the nurse noticed something amiss as Frohder tried to get out a word but could not. The doctor was concerned, too. She sent her patient to see a neurologist. He ordered an MRI and did some simple mental and memory tests. He diagnosed Frohder with Stage 1 Alzheimer's disease.

"I was dumbfounded," Bugg said. "It was hard to speak."

A year later, another doctor told them she had more advanced Stage 2 disease, her condition clearly deteriorating.

"This is happening too quickly," Bugg said. "Time is not on our side. It's our biggest enemy."

For now, Dorothy doesn't seem like an Alzheimer's patient. Her blond hair shows only hints of gray, her pale skin just beginning to show wrinkles. She gets around with ease, strong enough to help rake leaves in the backyard.

But at her Pasadena home on a recent afternoon, it is clear something is wrong. She can speak, though she often stumbles over words. At times she seems to be keeping up her end of a conversation, but a minute later, it is hard to follow what she is trying to say.

She repeatedly says, "I'm fine."

"I could do anything if they'd let me," she says, later adding, "I dress myself, I bathe myself, I can do all those things."

"You're very self-sufficient," Bugg assures her.

"And I'm going to stay that way," she said.

With Frohder now in a clinical trial - perhaps getting an experimental drug, perhaps just a placebo - the couple holds on to a small thread of hope. "This disease is taking over and limiting her abilities," Bugg said. "I just hope we can slow it down. I'd love to see a miracle happen."

This is not the life Kent Bugg imagined he would have at age 48. He figured he and Frohder, now 58, would still be working, saving up for a retirement to be spent out West or traveling the nation in a motor home. Now, he is the only one drawing a paycheck, as a customer service agent for AirTran Airways. Free moments are spent worrying about whether his wife will burn herself cooking or take her pills on time. Any dream of life on the open road has been deferred.

"She should be enjoying her retirement. She's been working since she was 16 years old. This should be a time in her life when she should at least be comfortable and safe," said Ann Frohder, 54, one of Dorothy's four sisters.

Instead, Bugg wonders how he will take care of his wife as her condition continues to worsen, worries about how she will be each night when he returns home from work. As he watches her sleep each morning, he fears this could be the day that this disease of constant indignities, of constant losses, will take so much that the Dorothy he knows won't be there when she wakes.

He does much of this alone (save for Ann, who recently moved to Maryland to help when she could).

The middle-aged don't usually travel this road. When Frohder goes to the local senior center on long lonely days while her husband is at work, the only people close to her age are some of the employees. When Bugg goes to a monthly meeting of the local Alzheimer's caregiver group, he is the youngest person there, usually by decades.

"The face of Alzheimer's disease has to change," says Wynne, who leads another support group. "It's not the 80-year-old sitting in a wheelchair who needs to be diapered. These are 40- and 50-year-olds who still function. They can bathe. ... They can go food shopping. It's not your grandmother."

The families of younger Alzheimer's patients face different challenges. Some with the disease have children (a member of Wynne's support group has two kids, ages 9 and 13). Many have relied on two incomes and have difficulty taking the financial hit that comes when the patient can no longer work. The healthy spouse may leave, unable to face what is coming.

When Dorothy Frohder was diagnosed more than 18 months ago, the doctor told her she should no longer drive. Though torn, her husband just couldn't take away the keys. It isn't like telling grandma she is no longer fit to get behind the wheel.

"To me, it is taking away some of her abilities to be free," Bugg said. "I want her to hold on to who she is, and being a human is having freedom and being able to enjoy life and not be locked in."

His wife's sister disagrees. She is afraid Dorothy will hurt herself or someone else. She worries Dorothy will get lost or be robbed.

"Ann begged me," Bugg said. "She wants me to get rid of the car."

Not long ago, Dorothy went to a store to return a teacup she had bought that was cracked. She called her husband, panicked. She had lost her keys. Eventually they were located, but Dorothy, by choice, hasn't driven since.

Dorothy Frohder spends much of her time isolated now. Her friends don't come by much. She can't do the many crafts that used to occupy her time; instead she just moves yarn back and forth instead of actually knitting.

One time, Ann thought it might be fun to take her sister for a manicure and pedicure. But Dorothy couldn't keep still. She kept putting her feet in the tub and then out as the manicurist tried to do her work.

"It was kind of like being with a child who is too young to do this," Ann Frohder said.

Dorothy is, her sister said, sometimes lucid, sometimes not.

"Usually not," Ann said.

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