Fading away

From the October 2010 edition

A wallet-size executive photo of Richard Groat—confident, relaxed, easy smile—is clipped to the visor of Gloria Groat’s van.

It was taken when the Powell couple’s life together was normal, day-to-day good, filled with books, cottage rentals in Nantucket, gourmet dinner parties and interesting friends. Back when Richard planned big surprises down to the last detail: London for an anniversary, with red roses waiting in their room at the St. James Hotel.

The photo marks the pinnacle of Richard’s career, vitality and intellect. All before his middle-age life—sailing, flying a small plane on weekends, welcoming new grandchildren—began unspooling, ruthlessly ripped away from him, before the hellish diagnosis of early-onset Alzheimer’s disease.

What you usually associate with Alzheimer’s—keys turning up in the fridge, searching mid sentence for the impossible word—were not Richard’s first symptoms. Having joined Columbus’s WCMH-TV in 1987 as the local sales manager, he had served comfortably in that role for seven years, overseeing a staff of 10, until anxiety abruptly set in for the 52-year-old. Management changes were occurring. Some of his job responsibilities were being reassigned. Richard sensed his position becoming tenuous.

“Around 1994, he began having trouble with the sales reports and would make mistakes,” recalls Gloria. “He experienced night terrors. Lost his hair, just fuzzy little patches left, even lost his eyebrows. His immune system was compromised. But the big thing was the change in personality—he was constantly irritable, and it was impacting our relationship. Was it stress? Depression? Male menopause? We had to figure out what was going on.”

They first went to his general practitioner. Next, a psychologist. Then a psychiatrist, who attributed Richard’s symptoms to work-related stress, prescribed medications for depression and anxiety and began counseling sessions. This misdiagnosis remained in place for nearly two years, despite the fact that Richard’s father, Ted, had died at 83 from Alzheimer’s disease. “Richard seemed too young for Alzheimer’s, and LaVerne—his mom—was still so vibrant and sharp. We were naïve,” Gloria explains.

By 1997, Richard had been dismissed from WCMH. “Don’t worry, I’ll find something else,” he assured Gloria, and a quick succession of jobs followed—a sales rep for the Ohio Chamber of Commerce, then marketing and sales for the Columbus Quest (the now-defunct professional women’s basketball team). An avid hockey fan, Richard tried ushering at Blue Jackets games, but was distracted by the constant noise and movement. He also landed a sales position with Greenlawn Homes. Their modular and mobile home specifications proved tricky to memorize, so Gloria scripted cue cards. Still too difficult.

“I don’t want to do this!” Richard announced emphatically in the last hours of 1999 as he and Gloria were driving to Birmingham, Michigan. They were joining longtime friends from their gourmet dinner group at a country club for a swanky New Year’s Eve celebration. Agitated, angry, he continued, “There’ll be too many people. I do not want to do this!”

“What’s wrong with you?” Gloria remembers saying, exasperated. “These are your best friends.” It wasn’t the friends, but the competing stimuli of social gatherings—the band, the dancing, the crowds—he knew would overwhelm him.

His night terrors persisted. “We tried everything to calm him—yoga, meditation, the rosary. Even a dream catcher we picked up at a crafts show in Worthington,” Gloria recalls. In desperation, they revisited Richard’s general practitioner, who suggested testing for Alzheimer’s.

Dr. Douglas Scharre, director of the division of cognitive neurology at the Ohio State University Medical Center, administered a battery of tests with seemingly simple questions to detect cognitive impairment, such as determining how many nickels it takes to get 60 cents. “Out of 26 questions, Richard answered 23 correctly. Not so good,” Gloria says.

Scharre also requested a PET scan (the three-dimensional image can reveal metabolic degeneration in the brain). “In the photos you could see areas of the brain that were gray, where there was no activity,” says Gloria, “areas that had already been impacted.” Only an autopsy can produce a definitive diagnosis, but Scharre confirmed the likelihood of early-onset Alzheimer’s.

Early-onset refers to patients 65 and under. It’s rare—an estimated 5 to 10 percent of the 5.3 million Americans currently suffering from the disease are early-onset. The most recent data (2007) from the Centers for Disease Control ranks Alzheimer’s as the sixth leading cause of death in the U.S. It has the potential to become a frighteningly expensive healthcare crisis, as the number of Alzheimer’s patients is expected to triple by 2050. It’s thought to be caused by two proteins in the brain: beta-amyloid, an abnormal protein that attaches to nerve cell endings, causing them to die, and tau, a nerve cell protein that, in Alzheimer’s patients, twists into tangles.

The disease first impacts thinking, planning and short-term memory. Daily life is disrupted—following a recipe or keeping track of the bills results in confusion—and you’re making (and misplacing) multiple to-do lists, losing your cellphone and not being able to retrace your steps.

In the mild to moderate stage, speech and spatial perception become impaired. Late-stage Alzheimer’s patients completely lose the ability to communicate. They no longer recognize family members. They’re helpless to care for themselves. Their brains shrink dramatically until the body eventually shuts down.

There is no cure. Only a handful of drugs can stall the progression, typically by about six to 12 months, and for just half of those who take them. The drugs are most effective in the very earliest stage of the disease—unfortunately, fear and denial, especially in early-onset cases, often prevent a prompt diagnosis.

“Dr. Scharre, what are we looking at?” Gloria remembers asking.

“Eight to 10 years,” he said.

What’s it like to hear a diagnosis—and a time frame—like that? Gloria, 63, runs a hand through her short auburn hair, pauses briefly and answers with her usual directness. “I remember walking out of there with such a strong sense of relief,” she says. “At last we knew what was wrong. I turned to Richard and said, ‘We’ll be able to deal with this.’ ”

That was March 2000—about six years after the first signs appeared. Gloria admits she really didn’t know how bad it would get over the next decade. She couldn’t have known then that the former executive’s last paying job would be a heartbreakingly simple task—sorting packages by color code at Airborne Express. That by 2002 he’d no longer be able to indulge in his favorite authors—John le Carré, Dick Francis—and give up reading. That when he took Hunter and Sterling, their two golden retrievers, for a walk in the cul-de-sac, she’d watch and worry, fearing he’d wander off. That he’d surrender his car keys by 2005, completely confounded by left turns. That in two more years he’d be unable to communicate, to say the words “I love you.” Or that she’d be shopping in Target for a sippy cup as his fine motor skills diminished.

But the reassurance she gave him as they exited the doctor’s office—“We’ll deal with it”—became, by necessity, her daily mantra. Days later, during an Easter weekend gathering, they shared the news with his two daughters from his first marriage, Kim Clements and Julie Carstensen, and their families, and offered the same resolve. Placing faith in Aricept, one of the few available Alzheimer’s medications, they were optimistic it would hold the line on his disease, at least for a time. (Namenda was added in combination when it came to market in 2003, and Richard was thrilled, so hopeful, Gloria says.)

Clements tried to remain positive. “Dr. Scharre had predicted Dad would have five decent years left before it got bad, and looking back, he was right on the mark. I decided to make the best of those five years instead of dwelling on the loss.”

She increased the frequency of her visits to Powell from their home in Nashville, providing time for her two daughters, Kate and Kelsie, then 7 and 4, to get to know their grandfather. “We would sit and just talk with him. I’d show the girls pictures of them with their grandfather when they were little, getting a piggyback ride.”

The Groats addressed several issues immediately (“You can’t stick your head in the sand with this disease,” Gloria warns), beginning with their financial situation. Early-onset patients are in a special category—careers are disrupted during the peak earning years as symptoms manifest. What savings the family may have accumulated can rapidly disappear, even intermittent care options such as home aides and adult day care quickly become expensive. “For the final 22 months, Richard was in care facilities,” she says. “At $7,000 a month, you could easily blow through IRAs and your retirement savings. And even with Medicare, there were lots of things it didn’t cover.”

Richard’s mom created a trust for his care that removed the financial burden, Gloria says. “LaVerne had been a frugal saver her whole life and wanted to do this. It covered everything, so we didn’t have to deplete our savings. And I didn’t have to take on more work with my business. It helped tremendously.”

They also had the hard, serious conversations while Richard was still capable: feeding tubes, Do Not Resuscitate orders, power of attorney and organ donation. Richard was adamant that he did not want to be kept alive “hooked up to machines,” as he put it. And they determined that, upon his death, his brain and optic nerve would be donated to OSU’s brain bank for Alzheimer’s research. “We both felt we should do whatever we could to help others,” she says softly. “Besides,” she trails off, as she refers to the genetic risk, “He has two daughters. . . . ”

Neighbors such as Eileen Kalmar, a neurobiologist, and Carol Kennedy, professor emeritus at the OSU College of Nursing, were invaluable not only as trusted, call-me-in-the-middle-of-the-night friends, but also in offering advice steeped in medical knowledge. Knowing that most care facilities have long waiting lists, Kennedy advised Gloria to shop and compare early on and went with her.

At first, things were fairly manageable for Gloria. When she ran errands, Richard could be dropped off at his mom’s apartment five minutes away. To maintain her decorative finishes business, Gloria Groat Wallpapering & Painting, she hired a home companion to stay with him a few days a week. She’d occasionally take him with her and plug in a DVD while she worked. Adult day care was an option, but Richard was much younger than the typical drop-off—most were elderly ladies—and he felt he didn’t fit in.

Thursdays became zoo days as he participated in a volunteer work program. The local Alzheimer’s Association transported patients to the Columbus Zoo and Aquarium, where they cleaned banners and washed tables, followed by lunch and a behind-the-scenes tour.

Eligibility for the program hinged on attending an early-onset support group for patients and caregivers. Richard and Gloria joined one at the Griswold Center in Worthington, but initially she was hesitant. “I thought a support group would be nothing but depressing,” she says. Instead, it was transformative. Trained facilitators from the Alzheimer’s Association provided memory exercises for the patients in one room and a discussion circle in another for the caregivers. Those friendships pulled her through some of the darkest moments of the disease, and she still attends meetings to advise others.

As time passed, though, things got much more difficult. “Unless you’re the caregiver, you have no idea how life-altering the day-to-day demands are,” Gloria says. All responsibilities became hers alone—maintaining the home inside and out, shopping and preparing the meals, laundry, doctor’s appointments, financial decisions, medical paperwork and innumerable phone calls, plus running her business. Something as simple as taking the car in for repairs became a study in logistics.

As the patient can do less and less, caregivers must fill in. From bathing and dressing—“There were days when I couldn’t get my own shower,” Gloria says—to assisting in countless trips to the bathroom and enduring sleep interruptions at night.

Thinking two steps ahead is a must. Take safety, for example. It might require childproof locks on cabinets, removing a patient’s temptation to drive by hiding the car keys, camouflaging the front door to discourage wandering or removing interior doors to prevent accidental lock-ins. Or if the patient is prone to violence, creating a caregiver’s safe room—many early-onset patients remain physically strong despite their mental decline.

It’s bone-wearying. And the caregiver’s health can suffer. For Gloria, it manifested itself in high blood pressure, something she’d never had to worry about before. And anxiety, coupled with depression—her doctor put her on an antidepressant. “You need to just get through this,” she says gently. “And you know it’s not going to get any easier.”

There’s also the loneliness, the loss of support you shared as a couple. At one point, Gloria had an eye issue—floaters and blind spots were appearing. She began to worry: Was it lupus? Turns out it was a ruptured blood vessel. “But you deal with these major things by yourself,” she says. “The ability to lean on your spouse is no longer there.”

By being an only child, as both she and Richard were, responsibility for their mothers, the two surviving parents, fell to her. In 2007, a visit to her mom’s home in rural Michigan revealed a situation Gloria hadn’t been prepared for—conditions resembling “one of those hoarding shows,” says Gloria, with clutter piled high, the phone unplugged and the refrigerator full of spoiled food. “She absolutely refused to go to a nursing home. I had to go to court for guardianship—she was suffering from dementia. I was finally able to get her placed in a home.” Gloria’s mother died in October of the following year.

Gloria dreaded making the decision to place Richard in a care facility. She had been asking herself how much longer she could hold on—as caregivers often do with each frightening decline in the patient’s ability. The physical demands alone were leaving her short-tempered and exhausted. “He could do nothing for himself by this point,” she says.

Richard’s daughter Julie made the choice easier. In May 2008, she was in Spain on extended business, accompanied by her daughter Isabella, and she wanted Gloria to join them for a much-needed break. It seemed the perfect time to segue from home care to a facility. Gloria explained the situation carefully to Richard—changes in routine and environment can be extremely disconcerting for Alzheimer’s patients. But Richard was comfortable with the move. “It was like a nice apartment, with his own bath,” she says, and he remained at the Wesley Glen Retirement Community near Worthington in its Alzheimer’s section for 15 months.

Hard to believe, but his stay at Wesley Glen overlapped with that of his mother. LaVerne, mentally fit though frail at 87, was admitted around the same time. Mother and son would roam the halls together, she being pushed in her wheelchair while Richard walked alongside. (LaVerne died in May, outliving her son by four months.)

With time, his agitation increased. Frustration would overwhelm him, and he’d hit the wall with his fist, rearrange the furniture, pace, yank out his catheters. Spills at dinner upset him.

“The sippy cup helped somewhat. We’d cut up his food into little bits, but he still couldn’t find it on his plate, couldn’t find his mouth,” Gloria remembers. “It was frustrating. And it’s so hard to see your husband like that, in a bib, just like a toddler.”

In his calmer moments, he could still be socially appropriate, smile and greet visitors with a reflexive, “Oh, hi.” But there was no real conversation beyond that. “If we took a walk on the grounds and I pointed out some daisies, he’d just say, ‘Oh, oh.’ But you could tell he wasn’t really making the connection. He didn’t know where to look,” Gloria says.

From Johnny Cash to Sinatra, Meatloaf to classical, Gloria kept CDs playing in his room to soothe him. His eyes would light up when his favorites came on. Scharre explains the connection: “Music is linked to old memories, which are stored multiple times deep in the brain, in parts not affected by the disease. Familiar music brings joy, tranquility.”

Richard was transferred to the Forest Hills Center on the far north side following a particularly violent episode of agitation—he threw himself against the wall and hit the very staff members he liked so well. His subsequent six months at Forest Hills, a secure facility for advanced Alzheimer’s patients, “was difficult to take, but it’s where he needed to be,” explains Gloria. He stared into space, responsiveness at a minimum, not knowing Gloria, or their two golden retrievers who had been brought in many times before, and certainly not the longtime friends who still stopped by. He recognized his mom longer than anyone, but that, too, had ended by autumn.

On a crisp weekend last October, when the hordes of tourists had long since packed up and headed home, Gloria returned to Nantucket. She took quiet walks on the beach, the sea spray chilled and bracing, and remembered the delicious, lazy days she and Richard had shared. She walked past the cottage they rented year after year, recalling the vacations they spent there with close friends cooking, trading stories, laughing.

She fell into another stretch of depression upon her return home. Grief, in all its many stages, had set in for Gloria at least five years before. “Many people don’t realize your grief begins long before the patient dies, so you’re grieving alone. And yet, you can only mourn so much when you’re still talking to the person,” she says.

Richard was alive, but a shell—“just bones and cells, really,” she says. His essence, personality, quirks, all the countless things that made her love him in the first place, had been erased. “There were days,” Gloria confides, “when I would pray silently, God, please just take him. This is not how he’d want to live.”

On Jan. 5, around dinnertime, Gloria received a call from the hospice nurse she’d hired to provide extra care for Richard at Forest Hills. Richard was extremely agitated—much as he had been during Gloria’s last visits—but they couldn’t sedate him enough to rest. After just a couple of hours, he’d be up, walking, pacing, and it was now four days of this. “When I was there, he wouldn’t sit down, just kept walking. I didn’t realize what it meant,” Gloria says.

But after the nurse’s phone call, she knew. “His brain had gone over the edge,” she continues quietly. “It was time.” The next day they admitted him to Kobacker House, a Columbus inpatient hospice facility.

During those nine days, in the quiet of his room, Gloria would talk to her husband of nearly 34 years and sing softly. “The nurses told me hearing is the last sense to go.”

“It hurt me to think he had no food and water in his last days,” Clements says of her dad. “But he had reached the point where he couldn’t swallow. They kept him medicated and assured me he wasn’t in pain.”

She pauses as she considers his age, 68. “His body was in good physical shape. I really thought he would’ve died of a heart attack, something else. But he died from Alzheimer’s.”

Richard and the thousands of patients like him who’ve contributed to Alzheimer’s research through organ donation or participation in clinical trials have, in Scharre’s words, “moved the curve along.” And medical research may be close to a breakthrough in Alzheimer’s treatment if the current clinical trials yield their expected outcomes.

The drugs now on the market work solely on the cognitive function, helping the remaining brain cells operate at a higher level. But they don’t act upon the disease itself.

In scores of clinical trials around the world, and in six different studies and a variety of trials at the OSU Medical Center, they’re testing disease-modifying drugs. Drugs like bapineuzumab, a vaccine designed to remove toxic proteins in the brain. Scharre is heading the vaccine’s 18-month trial, which began early last year. While he makes no firm predictions, Scharre is hopeful, saying, “This drug worked well in animal studies and is promising.” His team also is testing gamma secretase inhibitors to see if they can prevent the toxic beta-amyloid protein from forming in the first place. He says the answer may lie in a combination of the two drugs.

And since early detection is so important, Scharre has just devised a new self-administered cognitive test that can be downloaded (sagetest.osu.edu) and completed in a physician’s waiting room. Primary care physicians are pressed for time, he explains, and they may not check for cognitive impairment if the patient doesn’t mention symptoms, especially in the case of younger patients. Scharre discourages taking the timed test at home. “People might cheat—get a lousy score and say I’m fine,” he says. “Or miss a question and experience unwarranted anxiety.”

He also discourages genetic testing, calling it a waste of time and money. Meanwhile, Richard’s daughters are well aware that they face a 50 percent genetic risk with early-onset Alzheimer’s. Clements, 47, says, “It’s not something I can control. I just have to have faith.” Nevertheless, she just completed a round of memory tests with her doctor and everything came back fine.

As Gloria now moves through a life without Richard, she’s making Alzheimer’s awareness her advocacy. She’s slated to join the local Alzheimer’s Association board of directors, and she hopes to team with its medical advisory board, Scharre and neighbor Kalmar to create a continuing education series for medical professionals, focusing on early detection.

Despite her newest painting commissions, community involvement and many close friends, some days are still difficult. “The loss of companionship is so hard. But I don’t feel robbed,” Gloria says. “I reflect back on all the wonderful things we did. We had a loving marriage. I was blessed to have had him.”

Rhonda Koulermos is a freelance writer.