“One in 8 people over the age of 65 in the United States has Alzheimer’s disease, and nearly 50% over age 85. An estimated 5.4 million people in the United States have Alzheimer’s disease.” (www.insidedementia.com)
Like many of us with aging parents, Martha Stettinius found herself in that situation we all dread–having to make decisions for and ultimately take on the care of an aging parent. Ironically this often happens at the time we’re experiencing a little more freedom as children finally leave home and we have more time for ourselves.
When Martha wrote to ask if I’d review her book I was happy to be able to say yes. I have been the caregiver for my now ex-husband for over a decade as the debilitating effects of Multiple Sclerosis have taken over his body. I’ve been through many of the same decisions and upheavals Stettinius describes in her book, Inside the Dementia Epidemic; A Daughter’s Memoir.
Inside the Dementia Epidemic begins in 2005 as Martha begins to notice little signs that something isn’t quite right with her mother. It would take her several years, doctors appointments and more drastic changes before it was determined that her mother had dementia, most likely Alzheimer’s disease. In the early days, Martha started making notes about what was happening to her mother; her journalling would eventually lead her to write this memoir.
The book is a story of dementia and a story of a difficult mother-daughter relationship. Yet it is also a resource guide for other families who are dealing with or suspect the presence of dementia or more specifically, Alzheimer’s Disease. The basic underlying theme of caregiving, making choices and advocating for a loved one hold relevance for caregivers coping with any debilitating, chronic illness.
The memoir is a matter-of-fact chronicling of the steps Stettinius undertook in trying to figure out the best way to care for her mother. The reader is given details about her mother’s symptoms, doctor conversations and the series of relocations from her own home to Martha’s home and then into a variety of care facilities.
We read about the feelings of guilt and overwhelming stress that comes from being a caregiver, made all the more difficult when the underlying relationship between the 2 parties was strained. Through the years of caring for her mother Martha is finally able to come to terms with her mother’s alcoholic, at times neglectful, past and develops love and compassion for her mother.
One of the most valuable aspects of this memoir is the well-documented and extensive series of appendices. Stettinius used her own experiences as the basis for sharing facts about genetics, diagnoses, associated illnesses and general resources. Equally useful, but hard to set out in a “do this first” sort of way is the day-to-day learning on becoming a caregiver. For example: Stettinius assumes that the assisted living facility would be more responsive to her mother’s condition and provide greater supervision. She learned the value of interacting closely with CNAs and other staff members. We watch as she agonizes over choosing the ‘right’ nursing home, and discovers, the hard way, the importance of becoming a strong advocate and dealing with medical staff.
We aren’t schooled on how to advocate for a loved one or how to take on a caregiving role. By the time we realize we need to know these things, we are in the middle of a crisis. Stress, guilt, fear and often, anger, get in the way and we are likely to make hasty decisions. It happens to everyone in a situation like this and there is nothing to be gained by remorse or worrying about not having done the right thing. As she writes about her regrets and agonizes over the things she feels she should have done, I wished she hadn’t been so hard on herself.
Caregiving is not easy for anyone. Our parents and partners are aging–and with that comes the inevitable illnesses. If there’s one thing you take away from this book, it’s the need to do a little planning, reading and educating yourself about facilities in your community.this is the time to have conversations about whether your parents have long term care insurance or wishes for how they want to be cared for in the event of an illness.
I recommend the book for those who envision themselves in a caregiving role in the near future. At any stage of the disease, there will be some solace in knowing others have confronted those hard decisions. We gain strength from knowledge, something Martha Stettinius fully understands and hopes to impart on her readers.
To learn more about Martha Stettinius and her book, see Inside The Dementia Epidemic.