MANKATO — It was like being thrown into a boxing ring with an opponent they didn’t know.
Jim and Judy Roe, married since 1965 and still very much in love, were about to face the toughest challenge of their marriage. And this kind of challenge rarely has a happy ending.
Judy’s doctor, Julie Gerndt of the Mankato Clinic, had just diagnosed her with Lewy body dementia, a form of dementia characterized by unusual proteins in the brain.
The proteins, or Lewy bodies, affect the brain in a way that, while not fully understood, produces motor dysfunction, fluctuation cognition, vivid visual and auditory hallucinations, and dementia.
“In all my 40 years of ministry,” Jim said, “I’d never heard of Lewy body.”
It’s not that rare. After Alzheimer’s disease, it’s the second-leading cause of dementia. In some ways, it’s not as cruel as Alzheimer’s, which robs victims of short-term memory. But in other ways, it can be worse. The hallucinations, both visual and auditory, can be crippling.
Judy not only sees things that aren’t there. She also relives horrific moments of her life, such as the time she reacted as if she’d just learned her mother had died, or a more recent case where she was convinced something horrible had happened to the grandchildren.
Getting a handle on the her disease was important. But it didn’t stop Jim and Judy from living. And for Jim, living means getting outdoors. They still went for vacations, still tried to enjoy the outdoors.
Even as they lived life, though, the hallucinations grew worse.
“We were lucky,” Jim said. “The dementia didn’t show up for four years, allowing us time to travel.”
Jim estimates that in 2008, Judy was seeing hallucinations about 20 percent of the time. By 2009, 30 percent. By 2010, 50 percent. Today, it’s nearly constant.
She was seeing bugs in food, random children, babies in the house she felt compelled to care for, grotesque people. Jim tried to help her understand, telling her the hallucinations were like movies — she sees them, but they’re not real life.
He installed child-proof locks on the basement door because he was afraid she’d hurt herself. The longest he’d leave her alone was 20 minutes, because he could never be sure what she’d do.
Around this time, 2010, is when Judy’s health and ability to take care of herself got worse.
Jim took her to the clinic for periodic dementia tests. Initially, she showed a few signs but nothing severe. Every six months, though, she was retested. Eventually, she no longer had the presence of mind to find the date on a newspaper. She didn’t know what day it was. When given three words and told to remember them later, she failed. When asked to fold a piece of paper three times, she failed.
As Judy’s dementia worsened, so did Jim’s state of mind.
“I’d missed a few doses of her medication and was feeling guilty. I was doing more and more myself. Laundry, cooking, still working part time, doing volunteer work, preaching. Because she wasn’t sleeping well, I wasn’t sleeping well. I would try to take a nap when she did, but I never felt comfortable doing that.”
In February 2010 Judy came down with a very bad chest cold. Because of her Parkinson’s medications, she was unable to take cold medication.
“She went from being able to do many things by herself to not being able to do anything, and she was very sick,” Jim said. “When she’d cough, it was all so painful to watch her trying to deal with that. That played a role in setting her back, and her dementia played a part in how she was able to cope.”
By the end of June 2010, Jim broke down and made what he considered the only sane decision he could when it came to his personal health and his wife’s well-being: He started Judy on home care.
“That’s where I started to address my own needs for sleep and to get stuff done that wasn’t getting done,” he said.
For several months, they struggled to find a home care aide who was the right fit for Judy. The first was a great housekeeper but didn’t click well with Judy. The second had a counseling background and clicked well with Judy, but fell a little short, Jim said, when it came to housekeeping.
Jim decided he needed more than the few hours per week he was scheduling for home care. He found an adult day care program run by Pathstone and housed at Christ the King Church in Mankato.
Finally, he said, he got some relief.
“For me, it was so much better,” he said. “She liked it, but for different reasons. She thought she was going to work as a physical therapist. She would interact with people, sometimes she’d sleep, but she’d be assessing people’s needs, make comments to the staff about what people needed. The staff was grateful. ... One day she said, ‘Where’s my paycheck? And I said, ‘Well, you’re really more of a consultant, but also a participant.’ She was OK with that.”
Jim liked the time it gave him. But much like that day in 2007 when he had to leave her in the care of a psychiatrist, leaving her there that first day was tough.
“On the first day, I dropped her off and went out to the car and cried for a half hour,” he said. “I knew it was one more step toward what was really going on.
“Each step along the way, you face the fact that you’re losing all of this. Then you gird your loins and get ready for the next step.”
Dealing with the demise of a spouse, he said, can be a soul-searching experience.
“As a caregiver you’re facing your limitations,” he said. “You have to understand you’re a human being and accept the fact that you can’t meet this person’s needs all the time. You can fool yourself into thinking you’re something you’re not. But this process brings you really close to realizing who you really are.”
While the adult day care was helping, Jim was still struggling. His moods were low, he was still impatient. He said he learned that, when you’re lacking sleep and under stress, patience “goes out the window,” and that was something new to him.
As a pastor, he’d made a career out of being a good listener and asking questions that helped people find their own answers. Judy’s mental state was challenging that, and he wasn’t rising to the challenge.
“One day she said, ‘I know you don’t like me. I can tell. I can see it in your face.’ ... That was a tough one.”
He knew he was struggling. But he didn’t know it was so apparent to Judy, the person he’d spent so much time trying to care for.
In the midst of all this decline, Jim made a decision that today he regrets. He decided to take her on a weekend getaway to visit Judy’s cousin in Grand Rapids.
It went poorly. She enjoyed visiting her cousin, but she spent the weekend hallucinating and sleeping. When she was awake, she was generally confused about what she was doing there. While there, Jim and Judy had planned to visit an old friend in nearby Ely. But when Judy’s confusion prompted Jim to call and cancel, the old friend said, “I wondered why you were doing this, taking such a long trip.”
“I might have been in some denial,” Jim said. “This was the point at which I said, ‘Taking trips with Judy isn’t going to happen anymore.’”
Depression, and the hand of God
Jim will be the first one to tell you he was struggling. And not just needing-a-little-more-sleep struggling. He was spiraling into depression. He saw it. And so did Gerndt.
“I started getting lonely a lot,” he said. “And I started getting obsessed with planning the super funeral.”
That depression-based obsession grew like a cancer. The more it grew, the more devastating a toll it took on Jim.
“I found myself not being able to decide what to wear, not exercising. I’d sit in the chair and mope around. It would take me two hours to decide what to eat and make a meal.”
Jim wanted nothing more than to create an event that would celebrate the life of the woman he met over a milkshake at a resort in Glacier National Park so many years ago. When this funeral was over, he’d want everyone to know how much she meant to him, how her sense of humor lasted until the end, how he never regretted anything and wouldn’t give back any of their days, even the difficult ones.
But it wasn’t coming. The man who’d helped plan and presided over hundreds — thousands — of funerals, couldn’t pull himself together enough to plan the one that mattered most.
“I was afraid … I was afraid of failing Judy in terms of celebrating her life. I felt incapable of doing it,” he said. “I’ve done marvelous funerals for people. It’s not like I’ve never done this … There was just an enormous fear that I’d fail at doing it.”
He began meeting with a psychologist to talk through his pain. And through these meetings, Jim had a major breakthrough.
He realized that a big part of his fear was based on his experiences with his mother.
She’d been in nursing home in her final days and Jim was working full time. He wasn’t able to visit as much as he wanted to.
“When she died, I totally botched the whole experience. Hadn’t thought things through. I made bad decisions. And I hadn’t resolved any of it, and now it was manifesting itself with Judy’s funeral.”
At this time — while he was sorting through the emotional baggage he’d been holding onto for years — he got a call from a fellow pastor. She was going on bed rest while pregnant and she needed Jim to fill in for her. He accepted. And it may have been the best decision he’d made in years.
His lesson that week: the Christmas story in the Gospel of Luke. As the story goes, an angel came. With that angel’s presence, the people who witnessed it knew all things were possible.
“As I worked on that sermon, I realized I was writing a sermon to myself,” he said. “I realized God was saying, ‘I’m with you, and you’re going to do some good things.’ … It was a totally religious experience. I was totally engaged in the healing process, and I knew it. The more I prepared, the more I wanted to prepare it.”
It renewed his sense of mission, his energy, his confidence. His decision making improved.
“I trusted that God was in control,” he said. “After that, the task of preparing for Judy’s funeral became very possible. It was like an awakening … felt like something was going to be happening in the months ahead.”
Ready for what lies ahead
Jim’s reinvigorated spirit gave him the strength to carry on after that through a series of setbacks that were hard on Judy. It wasn’t easy for either of them. But Jim no longer had a sense that he was failing, either as a loving partner or as a funeral preparer.
Jim has even found a silver lining of sorts, if such a thing can emerge from watching your spouse vanish. In his research into Lewy body dementia, he’s become sort of an authority on the topic. His knowledge is so well respected that Pathstone has asked him to give presentations about the disease to the staff.
Beyond that, Jim has begun an informal support group for families dealing with Lewy body dementia. There are support groups out there for Alzheimer’s disease and general support groups for aging parents or dependent spouses, but nothing specifically for Lewy body. Given its unique symptoms, Jim says it generally is much more helpful to talk to people who have gone through the same things he has.
“I revised my slide presentation, made it more interactive, used some of my teaching skills to keep it lively,” Jim said. “They sent me the evaluations. The majority of people checked it off as one of the highlights of the day. A lot more people were learning about Lewy body. I began to realize that maybe this is part of my identity crisis. Maybe I need to be doing more to get the word out to raise money. Maybe I need to be doing more.”
In the last few months, Judy’s physical condition has worsened. A few weeks ago, they began hospice care for her. She has lost a lot of weight. Today, she’s hovering around 80 pounds but she’s still eating, still drinking Ensure.
He’s not kidding himself. He knows what this means. Judy was allowed to be put in hospice care because, for her, the end is near. He’ll be crushed when she breathes that last breath. But he says he’s ready for her suffering to end, and ready for whatever adventure lies ahead.
“When you go through a difficulty like this, you want to see meaning in it. You begin to realize how much help she and I have gotten in the last nine years. I am a more aware, more appreciative person now. More aware of what this journey has meant.
“I’m pretty much over trying to control her life. I go over there and I’m ready to accept whatever she is today. I’m prepared for her death. … I’m sad I see our relationship becoming less and less weekly. She’ll sleep more, eat less, get weaker. That’s kind of the road ahead. I know there will be challenges ahead. But hey, bring ’em on.”
And every day, Jim still goes to eat lunch with her at Pathstone.
During a visit one day a few weeks ago, Jim sat next to Judy as he always does to help her eat. He sat patiently, listening to her talk about the pheasants and peacocks roaming around the room, and watching her talk to a stranger about growing up in St. Paul.
When she no longer wanted any mashed potatoes, she let him know.
And then he casually slid the plate in front of him and finished what was left of her lunch.