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We Carried The Mat: My faith journey as a primary care giver… and how a community made all the difference by Katie Jordan chronicles the journey with her husband Jay through his two-and-a-half year battle with ALS (Amyotrophic Lateral Sclerosis ), also known as “Lou Gehrig’s Disease.” Moved to begin journaling in January of 2004, before Jay was diagnosed, Katie offers a first-hand account of living with this disease. Her fears, struggles, triumphs and honest reflections bring you into their lives.
Katie, trained as a physical therapist, was used to writing the clear, concise words of medical documentation. Her natural bend for creative writing, first expressed as a teenager took a back seat to her clinical writing.Through her journaling, Katie wrote again from the heart. Providentially, as her husband was diagnosed with ALS, Katie took to writing more frequently about her life lessons. She shares them without trying to cover her doubts, her sincere faith in God, and her struggle to find meaning in Jay’s illness and death.
The book is full of vignettes that bare the difficult realities of being a spouse and a caregiver. Katie notes that her role as primary caregiver encompassed many roles, from bedpan to patient advocate. Daily challenges, ones she never imagined would be lived out in her marriage vows ‘in sickness and in health,’ left her drained and weary. Her story is not unusual for families who have lost someone to ALS. Her transparency is.
Katie gives us a picture of why it is so hard to ask for help when one is the primary caregiver. She recognized that her personal struggle began to impact the well-being of her husband. But she could not (or would not) ask for help from family and friends. Several weeks went by before she and Jay told their young adult children about his diagnosis.
It was a sermon on Mark 2:1-8, that changed Katie’s understanding of how God would help them through this crisis. The passage tells the story of a man who was let down through the roof of a home where Jesus was preaching. The preacher suggested that the “mat carriers” were fulfilling a vital role in the Church – to support those who were facing life-ending illnesses. Katie challenged the Church to also see this passage as one that also those who are faithfully serving as primary caregivers. After an honest exchange with her church’s leadership, consistent and appropriate help rallied around them.
The book offers excellent insights for those who want to help, but don’t know how. Katie intersperses her narrative with caregiver tips and insights. She also includes three helpful appendices:
- Caregiving Online Resources
- Forever and Ever Cards (her attempt to design supportive greeting cards for the chronically/terminally ill)
- Helpful Hints on Home Modification
Readers will find these appendices a great resource.
The major shortcoming to this book is that it needed better editing. Sometimes the details in the story (for instance, a list of names of people who helped) seemed more like a thank you note than a detail which contributed to the story. It became tedious reading these names as the reader has no knowledge of them and the “laundry list” of them appeared to serve no literary purpose. In the Kindle(tm) version of the book, the “caregiver tips” were not typeset in such as way that they were clearly identifiable as a sidebar to the storyline. It made things a bit confusing until the reader is used to the formatting.
Overall, this is a difficult-to-read but essential book for those who find themselves in the undesirable club of primary caregiver. Whether your beloved is dying from cancer, ALS or a chronic disease, the Christian message of hope, perseverance and peace permeates the pages. It is worth having on hand as a resource.