The Ultimate Performance Art: Love

Central Recover Press 2013.

I've noticed that there are a lot of books about caregiving. I've had the opportunity to read several.  Surprisingly, I haven't reached the point of saturation.

Why am I still engaged?

While earning my master's in gerontology, I read many interesting statistics and many solid evidenced-based scholarly articles on family caregivers in general and caring for people with dementia specifically.

However, the work of scientists and social scientists cannot fully capture the caregiving experience.

(A review copy was provided by the author in exchange for a fair and honest review.) 

The relationship between caregiver and the person with a chronic or a terminal disease is more complex than any scholar can communicate.  

I strongly believe that artists are better equipped to represent the caregiving experience.  

I invite you to read Deborah Shouse's book Love in the Land of Dementia: Finding Hope in the Caregiver's Journey.  (See my review on Goodreads.) Shouse brings her skill as an accomplished writer to the task.  But more than that, Shouse brings her character: she's attentive, kind, perceptive and wise.


Shouse describes her parents'  marriage before and after her mother's memory problems appeared. Her vignettes about her mother's dementia convey much warmth, compassion, and humor.

Dementia has the potential of robbing people of their identity and their relationships. Shouse uses her skill to wrestle her mother's dementia into a place that preserve's her mother's value and preserves their relationship. This requires many transformations along the way.

And as the book's title suggests, Shouse also demonstrates how to love someone with dementia--and how to be loved by them. Her book is also a tribute to both her parents; she describes her parents' major life events and their marriage before and after her mother's memory problems appeared.

I was blessed with the opportunity to see Shouse and her partner Ron Zoglin give a performance based on her book.  They traveled from the Kansas City area to Winfield, Kansas on November 13, 2013. She and Zoglin came as guests of the Central and Western Kansas Alzheimer's Organization.

Deborah talks, Ron listens

Telling a story with gusto

They performed about a half dozen scenes or vignettes from the book.  Yes, I had read the book prior. However, their performance brought more depth and texture to the topic.  How they told these stories taught as much if not more than the words they spoke.  Such inspiring people!

My experience with the book and the performance did not really teach me the cold, hard facts of dementia. Shouse and Zoglin encouraged me to be a better human being, to use my talents to love and serve others around me.

Both the book and the performance demonstrate how the act of caregiving is not limited to its challenges. (And it's clearly challenges abound.) I was touched by how Shouse describes how this journey can be poignant, tender, joyful--even sacred.

While dementia served as that catalyst, her insights about love and human relationships can be applied to people of all cognitive abilities.  Consequently, I can strongly recommend the book's to all people, not just to caregivers. Nevertheless, her journey will resonate more strongly for those who love someone with dementia.

Related:

The Long Hello: Book Review
Strong, Smart Women Wrestling with Caregiving
Movies Depicting Alzheimer's and Other Dementias