Throughout every step of living with her husband’s diagnosis of dementia, Rosalie kept writing in her journals. She credits her therapist for acknowledging that her feelings were real, and that she could let them out. And let them out she did … in her journals.
As a little girl growing up in North Dakota, Rosalie Wosepka always imagined heaven as a library. She was fascinated by the written word, and kept journals throughout her adolescence and teen years.
When she married and had children, Rosalie still kept journals, adding baby books about each of her children as they grew up in Alexandria, MN—the stories of their lives, funny things they said, words of comfort and connection.
Early Diagnoses: REM Sleep Disorder, Parkinson’s
After the kids were grown, Rosalie and her husband, John, moved to downtown St. Paul, MN, where he could walk to work in the city’s skyways. Around 2006, John began to experience leg spasms at night, occasionally severe enough to knock him right out of bed. He was initially diagnosed with REM sleep disorder.
Five years later, the diagnosis was changed to Parkinson’s, and Rosalie and John worked with the Struthers Parkinson’s Center in Minneapolis, eager to use all available services in trying to navigate his illness. Eventually his symptoms progressed to difficulty with visual and spatial perception, making physical tasks more challenging for the ever-active John, who loved golf and basketball, biking and Rollerblading.
“I Remember Hearing the Word, ‘Dementia'”
When her husband pulled the car to a stop two full blocks before a stoplight, Rosalie said that’s when they headed to Mayo Clinic. John underwent a battery of psychological tests, and was found to have mild cognitive impairment. “I remember them saying the word ‘dementia,'” Rosalie said, “Oh, my goodness, it was earth-shaking. Traumatic. John was a guy full of life.”
They met with a dementia expert, and approached the experience as if they were embarking upon a journey. “John was the person going through the disease, and I was the map reader,” Rosalie said. “He would ask me, ‘What will happen next?'”
The upshot of the diagnosis? “We didn’t wait to do anything,” Rosalie said. “We said, ‘Yes!’ We were as invested as we could be in the lives of our children and their families.” They were open with their three grown children from the beginning, but waited to share John’s condition with a wider circle of friends and colleagues.
They did some traveling, went on bike trips, spent time in the south over the winter, and focused on living in the now.
Learning About Lewy Body Dementia (LBD)
Eventually John was diagnosed with Lewy body dementia (LBD), a progressive brain disorder in which Lewy bodies (abnormal protein deposits) build up in areas of the brain that regulate behavior, cognition, and movement.
LBD is a complex disease, and can present with a range of symptoms, including problems with thinking, memory, moving, sleep and/or changes in behavior. Because it shares symptoms with both Parkinson’s and Alzheimer’s, LBD is difficult to diagnose definitively early on.
Throughout every step of their journey, as she became a caregiver in addition to wife, Rosalie kept writing in her journals.
She said, “I’m a pretty pragmatic person, and John was always more of an optimist. He told me, ‘We’ll figure this out, day-by-day.’ I figured that knowledge is power, so broadening my base is power.”
In addition to journaling, Rosalie also sought out support in the community, and went into therapy for six months. She credits her therapist for acknowledging that her feelings were real, and that she could let them out. And let them out she did—in her journals.
Complex Process of Grieving
She encouraged John to write as well, so he composed letters to each of their three grown children, telling them how much he loved them, and to give them something of him to hold onto when he was gone.
Every member of the family went through a complex process of grieving as John began to lose his abilities, bit by bit.
“We were canoeing, something we’d done often, and John always rode in back and steered. And one day he didn’t know how to steer any more. I was so angry that another simple pleasure was gone from him, feeling the loss that he must be feeling. For me, I had find a way to let that anger go, so I could be the person I wanted to be—calm and supportive.”
We Learned to Reflect on What Matters
“I would have been raging—was raging, in my journals,” Rosalie said. Because LDB patients have periods of lucidity, she was grateful that John could tell her what was going on with him, right up to a couple of weeks before he died.
“I can’t say I have gratitude for Lewy body dementia,” Rosalie said, “but it does cause you to reflect on things that really matter.”
“I was a witness who walked with him, sat with him. And what helped me to be that witness was making an effort to broaden support—not telling our story every day, but making connections. Because your whole world shrinks.”
Storytelling to Make Connections
When John eventually moved to a care center, Rosalie again used storytelling to make connections.
She wrote stories about John on the whiteboard in his room. “My goal was to show respect for the people who cared for John,” Rosalie said. “I wanted to know them, and wanted them to know John.”
She told about how her husband was one of 10 children. How he played on the high school basketball team, though he was only 5-foot-9. How he’d spent a career in banking, but one of his college jobs was cleaning toilets.
“He was a little embarrassed about some of the things I’d write,” Rosalie said with a smile. “He’d say, ‘You’re not going to tell that story, are you?'”
But Rosalie knew these stories gave the people who cared for John a glimpse into who he was as a person—and there might be something in common.
Excerpts from Rosalie’s Journals
John Wosepka died on July 4, 2018, mourned by his family and the wider community. Rosalie spent the next couple of months at their cabin near Alexandria, writing and reflecting, finding joy in nature, and navigating her way through John’s absence with the healing power of words.
Here are few excerpts from one of Rosalie Wosepka’s journals, a volume she called “Altered Course”:
Now I think for both of us
Ever vigilant so
Harm does not come your way
You are vulnerable
And I cannot always
Protect you though I try
Forgive me when I falter
Sitting on my porch
Drinking in the sounds
Shimmer and shake
Refuge and restraint
We are lucky we have made peace
With our past imperfections
We are content to look at the whole expanse
And see it as good and worthy
When you look at me with your
Brown and trusting eyes
I know that I am known and loved
We have that comfort
But what happens when the ills have not healed
And the memories are bitter?
I care not to think on it
It bodes not well for either of them
Peace be with you
Peace be with me
New to CaringBridge and Wondering What We Do?
CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health crisis through the use of free, personal websites. Know someone who could benefit from starting a CaringBridge site to keep loved ones informed and get the love, and support they need?