The Free Press, Mankato, MN

March 2, 2013

In Sickness and in Health: North Mankato couple's lives dominated by dementia marked by hallucinations

Part 1 of 2

By Robb Murray
Free Press Staff Writer

NORTH MANKATO — It’d be really easy to laugh at Judy Roe.

After all, this is a woman who once saw a rhinoceros walking down her North Mankato street. A woman who sees little people living in the house plants and in her ceiling fan.

She sees people living between the couch cushions and water flooding the kitchen floor.

One minute she’s fine, and the next minute she sees a party in her living room and does her best to make sure they’ve got plenty to eat. In a room full of nothing but nursing home residents and medical staff, she can see peacocks and turkeys roaming the floor.

Sometimes the things she sees scare her enough to send her fleeing from her own home. And sometimes the only way she knows it’s OK to return is when a mysterious man dressed in black beckons her inside.

If she could, Judy might even laugh along with you. But there’s nothing funny about the demise of a woman’s mind and body, and a husband who must watch his wife disappear before his eyes.

Judy, 70, suffers from a mind thief you’ve probably never heard of before called Lewy body dementia. While it’s not exactly rare, it’s far less known than Alzheimer’s. In some ways they are the same. But in others, they’re not.

Lewy body dementia is characterized, among other things, by hallucinations. Sometimes those hallucinations are funny, such as the thought of a rhino walking down James Drive in upper North Mankato. Other times they’re heartbreaking, such as the time she relived the death of her mother in a way that made her, for a few moments, experience the loss as if it were happening for the first time.

In a stroke of compassion, Judy — who knew this was coming — decided to help her husband’s transition from living as a free spirit with a doting wife to a man who must take care of himself.

Through that journey, 69-year-old Jim Roe has watched his wife disappear before his eyes. He’s laughed with her, lost patience with her, spent hours upon hours taking care of her, cried for her, prayed for her. As a United Methodist pastor, he’s spent a lifetime being the man at the front of the congregation — gregarious and accessible, the guy who helped heal others and try to help them solve their problems — while his rock, Judy, had given him the strength to be that man.

These last few years, though, have been a journey Jim never envisioned. He’s gone from a man looking forward to spending retirement with his best friend and lover to a man in the throes of depression over the virtual loss of his wife. Thankfully, Roe found a way out of that abyss and figured out a way to prepare for the end. He’s ready to celebrate her life while educating others about the horrors of a disease few of us know anything about.

But to understand his heartache, to understand why he hurts so badly and why he still spends afternoons helping spoon food into her mouth, taking walks with her down nursing home hallways, tucking her in at night — to understand why he still gets emotional when he talks about the journey’s darkest days and the godsend of hospice care, we must begin where all good stories begin. At the beginning.

Romeo & Juliet

It’s hard to imagine a more romantic setting for two young people to meet and fall in love than Glacier National Park.

They both had summer jobs at a resort. Jim was cabin porter. Judy worked behind the counter at the gift shop. Jim liked milkshakes. He also liked the looks of the young lady behind the gift shop counter serving them.

“She was standing behind the counter,” Jim recalled. “Beautiful black hair. Blue eyes. Wonderful tan. Incredible smile.”

And so they met.

She was from a blue-collar family on the east side of St. Paul. He was from a single-parent family in Illinois. Faith was a big part of both their lives. They spent their off time together going on hikes in the mountains. They fished for trout, talked and danced on tabletops when their work days were done. In a part of the country where moose, grizzlies and cougars roamed the rugged terrain, Jim and Judy had a wild summer.

He remembers one night when he brought out his guitar and serenaded her with Elvis.

“Maybe milkshakes got me, but what woman could resist a romantic evening under the stars and someone singing love songs?” he said. “I’m not a dummy.”

They fell in love.

When the summer ended and Judy went back to St. Paul and Jim went back to Illinois, he spent the next nine months thinking about her, writing to her. Finally, when summer break rolled around again, he went to work at Lassen Volcanic National Park in California. And there she was. They picked up where they left off, going for hikes, camping, trout fishing, spending time alone. Jim had wondered the previous summer whether she was “the one.” By that second summer, he knew.

They married in 1965 at Mount Carmel Lutheran Church in St. Paul.

“My pastor advised us not to get married. He thought we were too young and should wait,” he said. “Her pastor told her if she married (a Methodist), she’d go to hell.”

They went ahead with it anyway and honeymooned at — where else? — Glacier, staying at the same resort where they’d met over milkshakes and love songs several years earlier.

The Roes moved around depending on where Jim — who’d gone to Bradley University for undergraduate school and Duke University for his master’s degree — was appointed to serve. He was a United Methodist pastor, and spent time working in several cities around northern Minnesota before landing at Belgrade Avenue United Methodist Church in North Mankato.

They had three kids along the way. Life was good. For a long time.

Until it wasn’t.

First blood

Before anyone in the family would hear the phrase “Lewy body dementia,” they heard another word that sent them reeling.

In the early 2000s, Judy began experiencing tremors. By Thanksgiving 2003, the family had seen her shaking, too. And Judy was wondering if she, like her mother, would be stricken with so-called “aging tremors.”

Judy feared the worst. A neurologist confirmed: Parkinson’s.

As a physical therapist, Judy spent a career helping people in pain feel better, nursing them back to health. But being in that position — and through her continuing education courses on Parkinson’s — she’d seen the hell that comes with that disease.

They left the doctor’s office and drove away in their Ford Focus. It was a quiet ride. Until Judy spoke.

“I hope I die soon,” she said.

With medication, though, they were able to control the disease, for the most part. And the kids helped out. They bought their mother cooking equipment with big handles. Jim bought her a walker to help her get around; she’d been struggling more and more with balance. He also installed a raised toilet and handles in the bathroom. Judy and Jim took walks together daily around the block to keep her legs strong.

Around this time, Judy decided it was time to teach Jim some of the things he’d left up to her. She realized that, in a relatively short time, she wasn’t going to be available to take care of him anymore, and Jim would have to fend for himself when it came to keeping the house, and himself, in order.

So they spent time cooking. She showed him how to cook enough food so that he could freeze some of it, so that on busy nights or on days when he didn’t feel like cooking, all he’d have to do is throw something in the microwave.

“She showed me how to bake pies, and all her favorite recipes,” he said.

She taught him how she managed the family finances, the importance of tracking expenses. She showed him her filing system.

“She liked to be in control,” Jim said. “This was her way of knowing everything would be all right when she was gone. This was her way of controlling it.”

This was around 2006, the year Jim retired. Retirement was a blessing for them. It gave them time to spend together, making the most of their golden years.

But it was also, in some ways, a curse.

“So then I was home every day,” he said. “And then I saw a different picture. I was starting to see how difficult everyday tasks were for her.”

Judy loved to do crossword puzzles. During this time, Jim said, her ability to get them done was dramatically diminished. Her balance, he noticed, was getting worse. It was more difficult for her to turn while walking. Judy, in general, had become slower.

It could have been a dark time. But it wasn’t.

“It didn’t feel that way. It didn’t feel bad,” he said. “It was actually one of the better experiences we had through this. After that first year, we both became more comfortable with what was coming. We decided to live each day to the fullest. It’s when you start worrying about the future that you start screwing things up.”

A reality check came during a trip to Pagosa Springs, Colo. The trip was nice — so nice that Jim is moved to tears when he remembers the rainbow trout he caught for their meal on the last day of that trip. But the trip also gave him a clear vision of how far Judy’s troubles had progressed.

Her interactions with people and her inability to do things had diminished. And on the drive home, the amount of traffic on the roads triggered a fit of anxiety. Then a bad storm rolled through, and her reaction was severe, insisting to Jim that they pull over and get a motel room, which they did, but wasn’t necessary.

“She was coming unglued.”

Of Rhinos & fan clubs

The hallucinations started that summer. Or, at least that’s the best they can figure.

It’s hard to determine exactly when Judy began seeing things that in reality weren’t there, but in her mind were very much there. Jim says his wife probably never even realized when it first started. But eventually, clues emerged.

“Did you see that clown on the side of the road,” she’d ask. There was no clown.

“Who were all those people at the neighbors yesterday?” The neighbor’s yard was empty all day.

“I’d just thought I’d missed those things,” Jim said.

Then she started seeing people in the house. A wedding party in the kitchen. A band of gypsies on the patio. People hiding in the furniture. People living on the ceiling fan — which Jim jokingly dubbed her “fan club,” a joke Judy grew to appreciate.

A recurring hallucination involved a woman sitting on the living room couch wearing a lamp shade on her head. She didn’t speak. She just sat there.

“It was upsetting to me,” Jim said. “I’d say ‘Those things aren’t there.’ And she’d say, ‘So you say ...’”

Eventually they sought help from their doctors. A neurologist told them that either the Parkinson’s is causing the hallucinations and can be treated with drugs, or the drug she was taking for Parkinson’s was causing the hallucinations, in which case they could try a different medication.

But nothing worked to make the hallucinations go away. And they were getting worse.

“I’ve never felt so frustrated and so hopeless. The doctors couldn’t help her,” Jim said.

And this is when they made a decision that would change everything for the family and how they understood what was happening to Judy.

Rock bottom

Sarah Wennes teaches second grade at Monroe Elementary in North Mankato. She said it’s been tough watching her mother go through this. But it’s almost been tougher watching her father.

She’d seen the toll. Neither was sleeping well. Jim, she said, looked 10 years older. He was growing impatient with Judy’s deterioration and its effects, like how it was now taking her five minutes to fill a plastic bag with lemons at the grocery store.

“I remember thinking, ‘How could you do this every day?’”Sarah said of her father. “I took her shopping on Father’s Day to give my dad a break. And it was so slow, and so frustrating. I wondered, ‘How can you even go this slow?’ Everything took twice as long. I became really concerned not only about her but also my dad.”

Wennes said it was her husband, Darcy, who convinced the family it might be time to try something more aggressive with Judy’s care.

Sarah went with her parents to see the neurologist, who then suggested bringing Judy to the hospital’s emergency room and having her evaluated there, and possibly having her admitted to the hospital’s psychiatric ward.

Navigating the red tape surrounding mental health care, Jim said, was a struggle. And they spent a day getting nowhere. Then Darcy made contact with someone he knew in socials services, and Judy was admitted the next day.

Sarah said her father at this point surrendered to what seemed an inevitable conclusion.

“He was going along with it because he knew he was in over his head,” she said.

In September 2007, Mankato Clinic psychiatrist Julie Gerndt examined Judy. But this examination required Jim to hand care of his wife to someone else, something Jim wasn’t used to doing.

He still tears up thinking about the day he left her at the psych ward, a place he recalls as a sterile, cold, featureless room.

“Leaving her there was hard. For her and for me,” he said. “All of my energy was put into making her comfortable. I knew she’d be frightened, that she’d be lonely, and we couldn’t stay there with her. That’s what bothered me the most, how confused, frightened and lonely she’d be.”

Said Sarah, “He knew where he was leaving her, and that was extremely difficult. He was giving up control. It was a very tearful, sad, sad day. It was a rock-bottom day.”

Sarah drove her dad home. And that day, the family began to shift some of the focus to dad, a shift that challenged many of the family dynamics they’d lived with for years.

“As the daughter, I wasn’t sure if I should be telling him what I thought,” she said. “But we were coming to conclusions; it’s OK to be human, we all need to get some help.”

They also talked, she said, about some of the things the family had been noticing in Jim— that he’d been growing impatient with their mom, becoming easily frustrated when he’d otherwise be easygoing, often looking haggard and tired.

“He kind of let go that night, and maybe didn’t feel so alone,” Sarah said.

Spending that night together and having Jim let go of some of his emotions broke new ground for the relationship between Jim and his daughter.

“When you switch roles, when you’re the daughter consoling your parent, it’s very emotional,” she said. “You question things, the cycle of life is moving, things will never be the same as far as how you viewed your parent. Up until that point, he was the one who did that for us.”

After Judy’s week in the psychiatric ward, the psychiatrist reached a conclusion that finally would give the family the answer to the hallucinations. And with the full realization of what was happening to Judy, Jim’s mental health began to slip as well.

Before he got better, things were going to get a lot worse.

 

Tomorrow, in Part 2 of this series: The family learns the truth about Judy’s disease; and Jim’s descent into depression, rising from the ashes through prayer, channeling energy to help others.