Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey by Deborah Shouse
Publisher: Central Recovery Press
Review by Margo L. Dill (The Sandwich Lady)
The holiday season can often bring anxiety and depression for caregivers and their loved ones. What is refreshing about Deborah Shouse’s book is that she offers hope, practical advice and inspiration for caregivers, especially those whose loved ones suffer from Alzheimer’s disease in her book, Love in the Land of Dementia.
This is a beautifully written, captivating story of Shouse and her aging parents. She begins when her mom shows the first signs of dementia in 1997, and she continues until her mother’s death in 2004. Her mother’s story begins with simple tales of forgetfulness and confusion, while her father tries to come to terms with this woman who looks like the same person he married. But her personality is changing. He even states, “I want a divorce.”
After her father suffers from a stroke, Shouse convinces her parents to sell their home in Memphis, Tennessee, and move to a retirement community near her in Kansas City. However, her mother seems to quickly succumb to her illness. Within three months, she is moved to an assisted living facility. She wanders into other patients’ rooms; she refuses to bathe. She sometimes urinates in the hallway. Eventually, her care becomes too much for the assisted living facility, too.
Shouse continues her mother’s story, sharing the grief she and her father often experience, along with frustration and anger. But the one message that comes out during this memoir time and again is how Shouse learned to love her mother at each stage of Alzheimer’s. She stopped comparing her to the woman she used to be and started finding joy in her mother’s daily life.
One of the most touching scenes that Shouse shares is how her mother would often go through the day extremely confused, quiet, combative and not recognizing her or her father. However, when her father first came into the hospital room, her mother would always light up and say, “This is my husband.” This is one of the ways that Shouse, her brother and father learned to find love in the land of dementia.
Besides this being a memoir, Shouse has several helpful resources in the last quarter of the book. She includes sections, such as “Taking Care of Yourself: A Caregiver’s Guide,” “Making the Most of Your Time Together” and “Activating Your Advocacy.” She includes resources, websites and groups to contact if someone you love suffers from Alzheimer’s, and you need some help and support.
Shouse and her life partner, Ron, also started the HERO project to help people with dementia stay connected to their friends and family. “The HERO Project combines storytelling and scrapbooking techniques in a dynamic, playful, and interactive process that highlights and celebrates everyday events and honors the person who has Alzheimer’s.” She proceeds to give step-by-step directions in the back of her memoir for how to conduct a HERO project. For more information, check out her website at: http://www.thecreativityconnection.com.
Shouse also traveled around the world, performing the stories in the book in places like New Zealand, Costa Rica, Italy and England. In each place, they met people Alzheimer’s disease has affected and talked and shared with them.
Another amazing point about this author is that she originally self-published her story, using all the money the book generated to donate to Alzheimer’s programs and research. Her goal was to raise $50,000. In the introduction, she shares that she and Ron have raised over $80,000.
She states: “I believe this indicates the growing numbers of people who are affected by this disease, and how much they hunger for support and understanding.”
If Alzheimer’s or another illness is worrying your family this holiday season, Shouse’s book is proof that someone out there understands, has learned from her experiences and is willing to share them with you.