TCV Book Review – Inside the Dementia Epidemic

Martha Stettinius’ Inside the Dementia Epidemic–A Daughter’s Memoir [TCV Update 9/17/2024 URL to InsideDementia no longer available.] is a deeply personal account of her fractured relationship with her mother–from when her mother threw her out of her house through her five-year journey of caregiving.

Despite their strained relationship, Martha became the peanut butter of the family sandwich as she juggles being a good parent for her children with being a good caregiver for her mother.

After facing the reality that her mother cannot live alone in her lakeside cottage, Stettinius moves Judy, her mother, into her and her husband’s home. Soon, she discovers this is not ideal. Judy’s moodiness creates stress for her, her husband, and their two children.

Within five years, Judy experiences many changes as her health declines and Stettinius moves her out of the lakeside cabin into her home then arranges for her placement in an assisted living community, which leads to a stint in rehab followed by memory care and finally, nursing care.

Each living arrangement produces its own learning experiences in dealing with the staff, being proactive (if she’d only known ____ sooner), and walking that delicate tightrope between advocating for her mother’s care while maintaining staff cooperation. As most caregivers have experienced, things go wrong, details are not attended to, and Stettinius is left scrambling to recover.

Surprisingly, Stettinius reflects on a journey seemingly filled with regret. Her candid sharing offers enough reasons why we need to learn as much as we can about our loved one’s condition early on in our role as caregivers. Woven throughout Inside the Dementia Epidemic are phrases such as (not quoted): Had I known ________. I wish I would have not believed the doctor ______.  I wish I would have paid closer attention to ______. If I learned of ____ earlier, ____ could have been prevented.

Stettinius has the guts to be honest even when she doesn’t look like the ideal caregiver 100% of the time.   — Brenda Avadian, MA

Like many family members, Stettinius tries to do it all and feels pressure to fulfill all of her obligations–to be a good wife, mother, and a caregiver.

She tries taking her mother on outings to rekindle her mother’s memories of favored past times. These outings make her mother happy and help Martha feel the intimacy she lacked in her youth as her mother struggled with alcohol.

I found one comment about her mom’s incontinence striking. On page 120 (paperback edition), Stettinius writes, “I know nothing about incontinence….” I wondered how a mother of two could not know about incontinence. Is this illustrative of the limited thinking we caregivers experience when feeling overwhelmed by the situation?

As her mother thrives in the dementia unit of a nursing home, Stettinius makes discoveries about her mother and even her late brother and father. It’s not until the last 50 pages of her 286-page memoir that we learn how these discoveries help change her mind about her mother and herself.

Stettinius’ Inside the Dementia Epidemic, strengths lie in its candor and humility.  Stettinius has the guts to be honest even when she doesn’t look like the ideal caregiver 100% of the time.  Additionally, this book offers an extensive resource section at the end. Unlike other books with appendices, I found Stettinius’ handling of these diverse sources so refreshing, I began reading these first then read them again after reading her memoir.

Brenda Avadian, MA
Editor, TheCaregiversVoice monthly Newsletter and The Caregiver’s Voice Review