Rosalie Wosepka of St. Paul, MN, used writing and storytelling to document her journey alongside her husband, John, helping him to navigate in the world after he was diagnosed, first with Parkinson’s, and eventually with Lewy body dementia.
Words became an unexpectedly powerful healing force, helping Rosalie to pour her thoughts and feelings into a journal—a vessel that would receive them without judgment, no matter how raw they might be.
Some days she could only rail at the unfairness of dementia. Other days, she felt able to step back and think about the lessons received.
Thinking of her frequent travels with John, and her role as navigator in this new phase of their lives, Rosalie actually put a title on to one of her journals: “Altered Course.”
Here, Rosalie shares advice with caregivers and others facing their own altered course:
1. Say … ‘Yes’
When Rosalie and John received his diagnosis, they decided not to wait for anything, but to live in the moment, to be as involved as they could be in the lives of their children and grandchildren, and to travel and do the things they had dreamed about doing when they retired. “We were grateful for the time we had together,” Rosalie said. “We didn’t want to have regrets, things we hadn’t done.”
2. Find Support
“Knowledge is power,” Rosalie said. “Broadening my base is power.” She knew it was important to be open to all the different kinds of support and resources available—family and friends, plus a multitude of support groups and health programs. She and John worked with Struthers Parkinson’s Center, the Mayo Clinic Habit program, Wilder Memory Care Club, the Alzheimer’s Association Meeting of the Minds Dementia Conference, and Neurofit, among others.
3. Stay Active
John was always a physically active person—before his illness he golfed, biked and Rollerbladed, went kayaking and canoeing. He had good friends who continued to take him golfing as long as he was able; another friend stepped up and took him to exercise class every day.
Physical activity aids in balance, walking, and strength—and helps to stimulate brain function—so John also worked with a personal trainer to keep his body moving. On days he couldn’t really follow instructions, he and his trainer, Kayla, would dance.
As John’s main caregiver, Rosalie knew it was also important for her to stay active as well. She found ways to stay centered and mentally and physically engaged through yoga, mindfulness, and other activities on her own.
4. Finding a Place of Joy
Rosalie wrote in her journal, “Sadness is my companion, but it is not my only companion. As hard as it is to say, there were gifts. Some days I know I would have said, ‘Don’t talk to me about gifts.'”
She consciously made time to find moments of peace and joy—her happy place was at the family cabin, sitting on the porch listening to the water, the trees, and the birds, and she could leave feeling uplifted, rejuvenated.
5. Find Ways to Let Go
When you realize that you don’t have that much control, you come to appreciate the little things that really matter,” Rosalie said. “The relationships that matter.”
6. Share Stories
Through writing and storytelling, Rosalie explored and celebrated her relationship with John, and their journey together.
She also shared with his other caregivers stories from her husband’s life, so that they could see him as the three-dimensional person he had been before—and the person he remained, despite his illness.
Rosalie also took time to write out questions and concerns before conferences with John’s case manager and hospice nurse, to help find the right words and to cover all the things she wanted to talk about.
7. Talk About What’s Important
With his wife’s encouragement, John also wrote letters to each of their adult children, to tell them how much he loved them. He wanted to be able to give them something of himself that they could hold onto when he was no longer with them.
Dementia Caregivers, We Need Your Advice!
We’d love to find out how you have found your way on a memory care journey. You can tell us (and CaringBridge users everywhere) about any tips and techniques you’ve used successfully and what advice you’d give to other caregivers and family members. Comment with your ideas and stories below.