ONLINE: Susan A. Marshall

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Author and Backbone Institute founder Susan A. Marshall.

media release: Susan A. Marshall, author of the book, Mom’s Gone Missing, When a Parent’s Changing Life Upends Yours, discusses how her world changed when she suddenly became a caregiver for both parents who each passed away from  Alzheimer’s and dementia.

She will be presenting a live, virtual program twice at the Fort Atkinson Library February 24 at 10 a.m. and 6:30 p.m. Register at www.fortlibrary.org

There's a story to be told when suddenly you’ve assumed one of the most important roles of your life –a family caregiver, but with little experience to draw from.

Wisconsin -based author Susan A. Marshall found herself in just that position. She shares what happens to families during such challenging times in her book, Mom's Gone Missing, a deeply moving story about what it’s like to be a personal caregiver to both mom and dad. 

Susan's book starts with a call in 2016, on the first Monday of the year from her sibling in Colorado when Susan was in Wisconsin and her mother was in Arizona. Her sibling said, "Mom's Gone Missing."  

She learned her mother had left her apartment and, after driving for hours, she got lost in the Arizona desert. Marshall didn't know the type of car her mom was driving, the license plate number and other pertinent details. After the Arizona police department sent out a 'Silver Alert' her mother was eventually found. 

There were lessons from this experience that ensued for anyone who might walk in Marshall’s shoes someday. For example, your personal documents and wishes should be detailed and on file in appropriate places where they can be easily accessed before a crisis unfolds.

Jennifer Bauer, BA Executive Director of Alzheimer's & Dementia Alliance of Wisconsin, says, “In her book, Mom’s Gone Missing, Susan did a wonderful job of describing the full journey that an adult child caregiver goes through when supporting a parent with a dementia diagnosis. She never shied away from the difficult times it created between her siblings and herself. Nor did she steer away from discussing the challenging parts of her relationship with her mother and how that impacted what she felt while the primary caregiver.” 

The Foreword to Marshall’s book was written by Martin Schreiber, Former Wisconsin Governor, and author of My Two Elaines, which describes his journey caring for his wife who struggled with Alzheimer’s.

Schreiber writes, “Anyone who is about to journey as a caregiver or anyone who wants to understand what caregiving is truly like must read about the experiences of a caregiving daughter, Susan A. Marshall. She openly and candidly shares with us her excruciating journey as a caregiver for both her mom and dad.

Prepare These Documents –For Future Caregivers

Tips from Jennifer Bauer, BA Executive Director, Alzheimer’s & Dementia Alliance of Wisconsin

In addition to having a current last will and testament, Bauer, says, “You should have a power of attorney (POA-HC) for health care as well as a power of attorney for legal and financial (POA-LF). Review yearly and update as necessary. I encourage anyone over the age of 18 to have these things in place.”

POA-HC copies should be given to designated individuals as well as your primary doctors and any specialists, the nearest hospital and/or your designated hospital. A copy should remain in your home easily accessible in case of emergency, and should be noted where it is located.  

Do Not Resuscitate orders should also be kept with these forms.

POA-LF- forms should be kept on file at the legal office where it was signed, at the bank or any company that manages financial arrangements for the individual, and again with the individuals designated. Having the person listed on their accounts is not enough. If the person is receiving social security, the designated person will have to become the “representative Payee” for that individual through the social security department.

Have a location in your home like on the refrigerator where important information can be easily found especially if first responders are called. It is also helpful to include a brief medical history, a list of current medications, and emergency contacts.

Keep a written information booklet in an accessible location. Have conversations with your designated POA-HC and LF before a crisis arises. 

Protect your health.  

Caregiving is loaded with stress, confusion, and oftentimes a deep sense of isolation and inadequacy.  Pay special attention to habits you use to soothe yourself.   Eating, drinking, and sleeping are essential in proper amounts.  Too much of these and other habits may suggest that you need additional support.  Don't try to manage on your own.  You are not deficient because you feel overwhelmed.  You are human.