How to Keep a Loving Relationship when Faced with Dementia

by Linda Osmundson

My husband suffered from PSP—Progressive Supranuclear Palsy—
a form of dementia.

One night I wrote down all the things my husband loved to do and couldn’t do any more. By this time, I’d placed him in memory care.

As I cried and reread the activities, I realized they might be a book for children.

How I Added Hope to My Children’s Story

I picked a few of the activities and told them in children’s age-appropriate language. I added “now . . . . ..”  as a sort of page turner and said what he does instead.

When my agent submitted it to publishers, one came back and said it needed more hope. My first thought was, “There isn’t any hope!”

I finally saw how to keep hope.

I added a grandchild and how she could keep a loving relationship with her grandfather as they traveled through his dementia journey. The grandchild performed the activities I had experienced with my husband.  

For instance, my husband liked to walk fast and would often walk circles around me rather than slow his steps. Therefore, a line says “now. . . .she slows her steps to match his.”

Children pick up on health/disability problems and what to do sometimes sooner than adults.

Once Bob couldn’t navigate stairs anymore, one of our grandsons met us at the car, took hold of Bob’s walker and said, “Come on, Papa. I’ll show you the way to go where there aren’t any stairs.” No one suggested he do that.

My Hope is the Book Helps Others Facing a Diagnosis of Dementia

My goal in writing the book is to help others who face a diagnosis of dementia. They are often thrown into caregiving with little preparation.

They don’t know what to do, how to handle some situations and they make a lot of mistakes. I did.

Papa’s Changes offers subtle preparation. Things they can do to keep the joy in their personal relationship. The book may bring a tear to the eye but it also brings joy to the heart.

The Process of Writing This Book was Like Journaling

Caregivers as well as writers are taught to journal. I haven’t. The process of writing this book was essentially journaling—remembering the aspects of my husband’s life and the effects of his dementia.

It was a very emotional experience, the memories. I don’t know why I chose a granddaughter. I probably should have used a grandson.

Another challenge involved the submission process. My agent failed to sell the manuscript in two years although he felt it just hadn’t reached the right editor.

Still, the timely subject and my age convinced me to self-publish the book. Self-publishing is not easy and I had no experience in self-publishing. The thought of marketing leaves me overwhelmed.

I hired a co-publishing company, My Word Publishing. Unlike other co-publishers, who promise things they never fulfill, My Word doesn’t cost thousands of dollars. They provide a list of their services and stick to the list. I don’t feel as if I’ve been taken. However, they don’t market.

I Hope the Book Will Create Discussions on How to Keep a Loving Relationship

Like my How the West Was Drawn series, the book is written for ages 7-107. I expect parents and grandparents to purchase the book for their own information as well as to share with children.

Hopefully, it will create some discussions of further ways to keep a loving relationship. The backmatter offers advice for unprepared caregivers faced with any form of dementia.

I fictionalized some of the activities such as the puzzles. I actually worked 350 large-piece puzzles first. Then I stored the edges in a baggie. After I divided the puzzle into four parts, I stored each part in a separate baggie. Smaller challenges helped relieve Bob’s frustration.  

The book provides caregiving advice for adults in the backmatter. Every time I mention my husband had dementia, people comment they know someone with Alzheimer’s.

The Alzheimer’s association says there are currently about 5.8 million people with some form of dementia and the number is growing as more and more people age.

Families can expect to face dementia in their families in the future. If some experts can be believed, there are about 102 forms of dementia. Alzheimer’s is just one.

I Feel Triumph Knowing My Experiences May Help Others

My husband passed away September 15, 2018. My son believes I’ll feel closure once the book is out.

I look forward to that feeling although I know grief lasts a long time and surfaces at the strangest times.

I’ll feel triumph if anyone says they learned something about coping with dementia in a loved one. I feel triumph in knowing I can help others from my experiences.

Too Many Caregivers are Thrown Into Caring for a Loved One

Dementia patients are growing in numbers as people are living longer. We hear on the news of well-know people dying of the disease.

Recently, Bronco football team owner, Pat Bowlen, passed away and they announced his wife also has dementia.

Too many caregivers are thrown into caring for a loved one and have absolutely no experience. I hope hearing my experiences leads them to feel less stress and know something of what to expect.

Every dementia patient is different; no two are alike. A support group emphasizes the need to try different approaches. Everyone in the group contributes so caregivers can try every piece of advice and find what works for them.

I also suggest how to deal with dementia situations in the backmatter. One important piece of advice is to take care of yourself so you can care for your loved one.

I Chose an Artist Who Would Understand the Gentleness I Wanted Portrayed

For the illustrations, I searched for an artist who would understand dementia and the gentleness I wanted portrayed in Papa’s Changes. I found the perfect illustrator in Laura Peters.

Her soft, gentle watercolors create the images that illustrate what I see for Papa’s Changes. She cared, redid two and was always open to suggestions.

All her pictures are beautiful. She completed the 28 images in her estimated time.

Advice for a Young Author: Be Honest with Yourself

Be honest with yourself and others. Know you’ll experience times of grief. Research. Become as much of an expert as possible.

Realize you may have to self-publish which throws the marketing onto your back.

Note: Read more about Linda on her other Writing and Wellness post.

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Linda Osmundson is the author of hundreds of non-fiction articles for children and adults. She authored three books in the How the West Was Drawn series (award-winning Cowboy Charlie’s Art, Frederic Remington’s Art and award-winning Women’s Art) for ages 7-107.

She lives in beautiful Fort Collins, Colorado, with a view of the Rocky Mountains and Long’s Peak from her deck.

Learn more about Linda Osmundson on her website or on her How the West was Drawn Facebook page. Connect with her on Twitter.

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Papa’s Changes: Papa’s Changes, by Linda Osmundson and illustrated by Laura Peters shows the interaction of a child and her grandfather in order to keep a loving relationship as they travel his dementia journey.

Activities in the book can be shared by families facing dementia with a loved one. Back matter provides information for caregivers, list of other helpful books and dementia agencies.

Available at Amazon.