Manchester woman advocates for Alzheimer’s legislation in Washington D.C.

Dr. Julie Ballow. Photo courtesy of Jackson College.

Manchester resident Dr. Julie Ballow is a professor of nursing at Jackson College. Until her mother’s passing in January of 2017, Dr. Ballow served as one of her mother’s primary caregivers; a daunting job and a colossal responsibility. She, along with over 500,000 other caregivers in Michigan alone, are providing 586 million hours of unpaid care, with values estimated at 7.4 billion dollars.

Julie’s father realized something was wrong when her mother failed to recognize frequently visited places, exclaiming that they “should have visited a long time ago.” In the months to follow, Julie’s mother became noticeably more forgetful before becoming “paranoid, suspicious, and aggressive,” a stark contrast from her previous calm and gentle demeanor.

Memory changes that disrupt daily life and changes in mood or personality are two of the ten warning signs of Alzheimer’s disease, which currently affects more than 180,000 in Michigan alone, including over 514,000 caregivers like Julie.

One of the last lucid things that her mother said to the family that really stuck with Julie was, “You don’t know what you’re in for,” foreshadowing just how difficult it is to care for someone with Alzheimer’s. Until her mother’s passing in 2017, Julie split her time between her job and as a primary caregiver for her mother, working to maintain her hygiene, keeping her safe, and keeping her company. The process drained her “emotionally, mentally, and physically,” as she devoted herself to her mother’s well-being.

Unfortunately, her mother’s psychological state rapidly deteriorated, leaving her feeling panicked and anxious “12/24 hours of the day,” a sentiment that is common among caregivers of those with Alzheimer’s or other dementias. According to the Alzheimer’s Association, 2018 Alzheimer’s Disease Facts and Figures report, fifty-nine percent of family caregivers of people with Alzheimer’s or other dementias rated the emotional stress of caregiving as high or very high.  

Because of the impact the disease had on her and her family, Julie has become dedicated to fighting Alzheimer’s, explaining how she wants to be an ambassador for the cause. Julie is doing just that by joining more than 1,000 other advocates this week  at the Alzheimer’s Advocacy Forum in Washington D.C., where she will directly meet with lawmakers on Capitol Hill to improve the legislation surrounding Alzheimer’s disease, actively pressing for legislators to pass two key pieces of legislation, the BOLD Infrastructure for Alzheimer’s Act and Palliative Care and Hospice Education and Training Act (PCHETA). The BOLD Infrastructure for Alzheimer’s Act’s goal is to expand and promote innovative and effective Alzheimer’s interventions, as well as collection, analysis and reporting of data. The goal of PCHETA is to increase the quality and availability of Hospice and palliative care to Alzheimer’s patients.

 “So many people, unless they experienced it, think that Alzheimer’s is just becoming really forgetful … it’s so much more than that …” says Julie, who stresses that education and awareness, in addition to advocacy, are necessary, as “…things are only going to get worse, it’s very expensive, it’s very traumatic, and it’s scary because we just don’t know why.”

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by Sara Swanson

Sara Swanson is an editor, writer and founder of the Manchester Mirror.