While working toward a career in occupational therapy, Lauren Kovach’s path took an unexpected turn back home when her grandmother Helen — the woman who helped raise her — was admitted to the hospital.
“I was terrified at the thought of losing her,” Lauren says. “Growing up, my grandma, my mom and me were inseparable.”
Helen spent 10 days in intensive care undergoing a battery of tests, which resulted in several diagnoses. All of the conditions were treatable except one — early-stage Alzheimer’s disease.
Lauren and her mother, Pat, left the hospital knowing they needed to take steps to care for the woman who spent most of her life caring for them. Lauren withdrew from college and Pat retired a year early from teaching.
“We said, ‘OK, now the roles are reversed and we’ll do whatever we have to do,’” Lauren recalls. “I wouldn’t have had it any other way.”
When Lauren was a little girl, Helen referred to her as “moe chupe, moe chupe,” Macedonian for “my girl, my girl.” One day after the diagnosis, Lauren turned to her grandmother and said, “You’re my chupe; you’re my girl.” The nickname, reflective of the love and care Lauren was returning to her grandmother, had come full circle.
As Helen’s cognition and memory declined, Lauren wanted to learn more about the disease causing these devastating symptoms. She set out looking for information. “Somehow I knew that purple was the color of Alzheimer’s awareness. I Googled ‘purple Alzheimer’s shirts’ and the Alzheimer’s Association was the top hit.”
Poring over the Association’s website at alz.org, Lauren learned about the Association’s Walk to End Alzheimer’s
and reached out to her local chapter. She’s been a volunteer, fundraiser and advocate ever since. The natural-born leader takes great pride in heading up the planning committee for her local Walk, which raises awareness and funds for Alzheimer’s care, support and research.
Reaching Out for Help
In 2017, Helen declined into the late stage of the disease. The mother-daughter team, who managed Helen’s care for more than 15 years, decided they needed the help of hospice care. By definition, hospice provides comfort to both the person dying and to the family, but Lauren and Pat experienced the opposite.
“I had a bad feeling right off the bat,” Lauren says. “The social worker talked to us for about an hour but not once sat with or visited my chupe.”
The next day there was another knock at the door. This time it was Adult Protective Services, responding to an abuse and neglect complaint filed against Lauren and Pat by the hospice care company. Stunned, they talked with the agent at length before he turned his attention to Helen. The pair was soon singing and clapping.
The agent offered reassurance on his way out. “If only everyone could be as loved as her,” he said. “Keep doing what you’re doing.”
Turning Challenge Into Opportunity
While the negative experience Lauren and Pat had is rare, hospice care is an ongoing topic of national conversation. In 2017, while attending the Alzheimer’s Association Advocacy Forum
in Washington, D.C., Lauren joined other advocates from around the country in asking legislators to support the Palliative Care and Hospice Education and Training Act (PCHETA). If passed, the legislation will increase the availability and quality of palliative and hospice care for those facing dementia through workforce training, education and awareness, and enhanced research.
Lauren’s story has inspired many, including PCHETA co-sponsor Sen. Debbie Stabenow (D-Mich.), who featured Lauren in a 2018 campaign ad. Lauren is motivated by the progress she’s helped to achieve, but isn’t satisfied. She’s determined to fulfill the promise she made to her grandmother before her death in June 2017.
“I crawled in bed and laid my head on her chest as she was taking her final breaths,” Lauren says. “I told her through tears that it was OK to go. And I promised her that I would never stop fighting for her, for the three of us, and the immeasurable bond we shared.”
ALZ: A magazine of the Alzheimer's Association
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