Papa’s Changes, Dementia Through a Child’s Eyes came about one night as I contemplated the changes in my husband’s abilities. He was diagnosed with PSP – Progressive Supranuclear Palsy – a rare form of dementia. Symptoms included aphasia, loss of memory, cognition, balance, muscle control and swallowing. I was unprepared for caregiving. I argued rather than distracted. I didn’t hug him as often any more. I asked him to “remember;” an impossible task for him.
Once I no longer could leave him alone, I dropped out of the support group and gave up all my other activities to care for him 24/7. I was stressed, exhausted and sleep deprived. Finally, I hired someone to come into our home a few hours a week so I might attend support and writers’ groups, grocery shop alone or have lunch with a book for company. After he went into memory care in 2016, I visited him daily and served as his advocate with the facility. I learned to say “I love you,” often, hug and smile even when my heart was breaking.
By myself at night, I occasionally journaled. Once, I wrote all the activities Bob loved to do and how we adapted them to his current ability level. Already a children’s book author, I envisioned a children’s picture book. Here was how I might fulfill my passion to help children and other unprepared caregivers. Over the next two years, I received rejections. Even the editor of my three traditionally published books turned it down twice unless I revised it into a didactic story. Another editor wrote back saying, “It needs more hope.” My immediate thought – “Duh, there is no hope.”
My seven grandchildren’s compassion for their papa came to mind. I revised my story to include a granddaughter who changes the activities with her papa to accommodate his diminishing skills and keep their love alive. My grandchildren’s compassionate ways fueled the ideas for the story.
A timely subject, my advancing age and little desire to wait any longer for a traditional publisher’s acceptance and the possible two to four years required for publication, I self-published. I hired My Word Publishing in Denver. This reasonably priced company fulfilled every item on their list and all my aspirations. A local award-winning watercolorist, Laura Peters, whose vision matched mine created the beautiful, gentle illustrations which fit the seriousness of the subject.
This book, as well as presentations I give, prepares others who face the unexpected dementia journey of a loved one. The story suggests ways the caregiver must change as dementia escalates. It offers activities for grandchildren, grandparents or anyone facing a loved one’s dementia. Two back pages provide information for families and caregivers. A list of resources includes books to lend support and teach the caregiver ways to cope, handle difficult situations and reduce stress.
To accompany Papa’s Changes, I created a bookmark. As suggested by a writer friend, it lists ten lessons I learned as I cared for my husband. The bookmarks, book and my presentations fulfill my passion to guide other caregivers.
About the Author
Linda L. Osmundson’s award winning three-book series How the West Was Drawn and her latest book, Papa’s Changes, Dementia Through a Child’s Eyes, relate to readers ages 7-107! Hundreds of her articles have appeared in magazines, anthologies such as Chicken Soup for the Soul and newspapers.
Discover more at: www.LindaOsmundson.com