Mary K. from Michigan

My name is Mary and I’m a university administrator at Wayne State University. I reached for the telephone to call Mom (Eartha) to tell her about my pitiful little garden that’s producing hundreds of tomatoes. Just as I began to dial the number I remembered… Mom’s gone!!! That happened on September 9, which was exactly 8 months to the day when Mom died peacefully in her home in Millington. That’s where the caregiving story ends, right? Not exactly… That’s when I finally had a moment of realization of the awesome responsibility of caregiving and how fortunate I was to be one of the 12 member DREAM TEAM that loved and cared for Mom until January 9, 2015.
This chapter of my caregiving story started on February 11, 2011 when I received a call from my sister Linda that Mom was found lying on the floor when my younger sister Charlotte returned from work that day. The first fall did not result in any broken bones, but it was a“wake-up call” that Mom was no longer able to manage on her own, although we had already noticed some telltale signs of difficulty managing her finances and medication. Mom suffered another serious fall in March 2011 which resulted in two pelvic fractures, requiring her to be airlifted to Henry Ford Hospital in Detroit for surgery. We feared she wouldn’t survive, but gratefully she did.
All of our lives immediately changed upon her release from rehab in October 2011. She required a caregiver 24/7 because she could no longer care for herself and she was confined to a wheelchair. Mom also had dementia and she’d forget that she couldn’t walk or do things that she had done for the previous 78+ years of her life. She had lived alone and managed her affairs from 2002 when my father died until 2009 when my sister Charlotte moved in. Now, she was totally dependent
I realized that being a caregiver consumes your life. What I didn’t anticipate was becoming a human resources manager, dispute mediator, traffic cop, practical nurse, benefits coordinator and financier all as part of the role as caregiver. Caregiving was sometimes more challenging than my fulltime job, as I coordinated the daily schedule of caregivers. I live over 90 miles away, so I usually stayed with Mom on the weekend although there were many mid-week emergency trips as well. Sometimes, I would just sit in my car in the driveway to get a few moments of peace and quiet. We were fortunate to have the financial resources to afford paid caregivers, but it was also necessary for my sisters and me to do our “shifts” to contain caregiving costs. I contributed at least $1,500 a month to supplement what Mom received from my father’s GM pension and Social Security. We learned about the Aid and Attendance benefit for eligible survivors of Military Veterans. We couldn’t afford an attorney to help us, so that became my project for almost a year, with a successful outcome. Although Mom is gone, we still have fond memories of her final days. She was able to live in her own home and bird watch from the breakfast nook. She loved to laugh, enjoyed lighthearted jokes and was surrounded by her family until her final days. I didn’t have any advance training on how to be a caregiver for a parent. I gave it my best and hope I did it right.
My only regret is that the CARE Act (The Caregiver Advise, Record, Enable Act) which supports family caregivers when their loved ones go into the hospital and as they transition home had not been signed into law in Michigan. Would there have been a chance for the family to thoroughly discuss the medication dosage at discharge during an August 2014 hospital stay that eventually resulted in permanent kidney damage? Would the Christmas Eve hospital visit, with discharge on Dec. 26, 2014 have resulted in a more positive choice of treatment other than dialysis or hospice care for my 82 year old mother? I will never know. The CARE Act, Senate Bill 352 is in the Senate Health Policy Committee.

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