7 Dementia Care Tips From a Caregiver Who Understands

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.

Writing helped Rosalie think about lessons and learnings that came from being a caregiver. 

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.

Rosalie wished for her husband, John, to be remembered as a three-dimensional person, vs. a patient with dementia.

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.

  • Lauran Glover

    Before it gets bad, or anytime you can; make videos or take pics with them. You can look back and play/look at these when things get tough- keeps the real them in perspective for you so you can keep loving through the hardship- and realize that it could have easily been reversed and them taking care of you. This too will end- give yourself and them grace and take rests- use respite care- caregiver if you need to- whatever works to keep your sanity.

  • Robert Coollick

    Doesn’t get easier. My Wife had a tumor removed on her right frontal lobe leaving her with no short term memory

  • Lynn Pentecost

    I regret all the time that I wasn’t at home. We were both retired but I spent a lot of time with shopping, girlfriends, etc before my husband passed. Can’t get that time back.

  • Marjorie Thompson

    This is new for me. What are good helps to do for my needy one.

  • lydia Stengel

    My husband has Lewy body due to a frontal lobe injury from a car accident. That was 6 years ago. I am wondering when you all of a sudden decide I need to learn patience? I work 2 days a week that helps. He isn’t to the point he has to be house bound he still drives some. I get very frustrated with myself.

  • Linda Schmaelzle

    How do you cope with memory loss? Mom puts something down, forgets that she later moves it, then claims that someone has broken into the house and stolen it. She hides things which makes it even harder. She’s convinced. She’s also 100.

  • Sally Duer

    My husband a brilliant Bible scholar has been diagnosed with dementia. Looking back he has probably had it for several years. He also is in heart failure. One blessing we have is a church family who loves us and recognize that some of his comments in Bible are the true Max. They treat him with respect and acknowledge his comments. I appreciate caringbridge and the help they offer.

  • Aneita

    My husband has been in a nursing home with Parkinson’s with dementia. I was blessed to be able to take care of him at home for three years until he could no longer walk. He is steadily declining and we have difficulty communicating. I visit every other day and some days my heart is broken. Journaling helps and I remember the humorous things he said, whether or not he knew they were funny. It helps to re read my journal and laugh and cry. Every day is truly a gift and someday we will recognize each other in heaven. The Lord is my strength in this journey.

  • Lynda

    I also journal my life with my mom. She came to live with us almost three years ago and at the time we knew she had dementia but didn’t realize it was Alzheimers until I took her to my doctor and he did a few tests. Later I was going through some paperwork in her files and found out she had been diagnosed with Alzheimers seven years ago. I had no idea and my brother, who at the time lived close by her and would check in with her and take her to doctor appointments, never mentioned the diagnosis. Anyway, I’ve found that laughter is indeed the best medicine, not just for her but also for me. Now, instead of getting irritated with how things are I come up with something funny. I’ve always had a song in my head and she can say something that reminds me of lyrics in a song and I’ll start singing it. Usually it’s a song she remembers also and it kind of connects us in the present.

  • Clifford Roman Korkowski

    Thanks for sharing. You give dignity to the challenges many of us will face.