Caregiving

Wife Uses Power of Journaling to Cope After Husband’s Dementia Diagnosis

writing through dementia journey

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.

power of journaling

Poetry and words helped carry Rosalie through the worst, and best, moments as her husband’s caregiver through Lewy body dementia.

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.

living with Lewy body dementia.

Rosalie wished for those working with her husband, John, to know him as a wonderful husband, father and friend.

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

Leaves dancing

Waves lapping

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?

Comments (5)

Post a Comment

Renee King Apr 24, 2019 9:52pm
I am sorry for your loss my mom is in the last stages of Alzheimer's she is my best friend what I miss about my mom is the way watched tv together we don't know how much time she has left she sleeps a lot thought my name is Renee your story was very inspirational
Doret Melby Apr 05, 2019 1:17pm
John and Rosalie were wonderful friends. My late husband and John were great golfing partners. The memories we shared are priceless. Your story was wonderful and I admire you for sharing it with all of us.
Irene Brenner Apr 05, 2019 1:07pm
We met John and Rosalie in college and stayed in touch over the years. A group of fraternity brothers and their wives began having semi-annual reunions when we first heard about John, which I think brought all of us closer together. Rosalie- thank you for sharing your thoughts and tips with us.
Marguerite Lawler Apr 05, 2019 10:53am
Rosalie and John were two of my husband and my best friends and travel mates. The memories are precious. When my own husband passed in 2014, we shared in each other’s grief and healing, and for that I am so grateful. Thank you, my friend, for sharing your story.
Sharon Dardis Apr 05, 2019 10:50am
This article will make a tremendous difference in the lives of many caregivers and their loved ones. Thanks to Rosalie for her courage in sharing her and John and their families’ journey. Such wise, compassionate examples of how to carry on in the face of illness....with great love! ❤️