Honoring her mom and dad
Tags: Volunteering, Alzheimers, Family, Advocacy

Sue Wronsky visits with Central New York advocates at the 2019 Alzheimer’s Impact Movement Advocacy Forum. From left: Chapter CEO Cathy James, Sue Wronsky, Lisa Streeter, Mary Koenig, and Cindy Nigolian.

Sue Wronsky of Potomac, Md. is the Alzheimer’s Ambassador for Sen. Chris Van Hollen and longtime friend of the Central New York Chapter. A native of suburban Syracuse, Sue’s family became involved with the Alzheimer’s Association after her mother, Lynn, was diagnosed with Alzheimer’s in the 1990s. Her late father, Marty, was a longtime support group facilitator, board member and advocate for the Chapter.

Sue was asked to share her story at the 2019 Alzheimer’s Impact Movement Advocacy Forum and agreed to let us share her remarks with you.

After several years of struggling with my mom’s symptoms of early dementia, my parents finally received the unwelcome diagnoses of her Alzheimer’s in 1991 when she was 63. Once it became clear that Mom would no longer be able to be at home on her own, Dad retired from his high school teaching job a bit earlier than planned and became a full-time caregiver. Travel plans went by the wayside, long-planned projects put on the back burner and they prepared as best they could for an uncertain future.

Before his teaching career, Dad had a long career as an officer in the U.S. Marine Corps and was extremely proud of his service. Our “Uncle” Jim was a brother in arms, and he and his wife were dear friends of our parents. On a visit to the Poconos, one night after settling Mom into bed, Dad settled on the deck with them to have a cocktail and to solve the problems of the world as they liked to do. Uncle Jim, referring to my mom’s condition said, “So Marty — what are you going to do?”

My dad answered that they had reached out to the Alzheimer’s Association, had joined a joint support group, and were getting by on a day-by-day basis. Uncle Jim said, “No, Marty. What are you going to DO?” Dad was understandably perplexed.

Sue with her father, Marty, and advocate Mary Kubiak at a U.S. Senate Special Committee on Aging Hearing in Washington, D.C., June 2006..

Uncle Jim explained: Dad knew what the experience of a spouse caring for someone with Alzheimer’s was. Dad knew only too well the stress of being asked the same questions over and over, the embarrassment when his wife said something inappropriate in public, the difficulty in navigating Medicare eligibility and insurance issues. According to his friend, Dad knew these things, and Dad should be the one to talk about it.

In other words, if not him, then who?

When a few of my 6 siblings and I found out about this challenge from Uncle Jim, we were pretty miffed. Doesn’t Dad already have enough on his plate, caring for his wife of 40 years while watching her slip away?

Our Dad, however, took Uncle Jim’s challenge to heart. In addition to his full time care of Mom, he became one of the Central New York Chapter’s most active advocates, writing letters to the editor, making visits to his local legislators, taking the bus to Albany — with Mom in tow — for the annual state advocacy day, and joining me here in Washington one precious time for Advocacy Forum in 2006. Eventually, he was asked to join that Chapter’s board of directors, where he served for several years.

I’m an advocate to honor both of my parents, but especially to carry the torch for my father who wanted nothing more than for a breakthrough to be found during his lifetime. This wasn’t to be, as we lost him in 2013. I’ve got some time left on this earth, and I’d like nothing more than to find a breakthrough during my lifetime. So, I will continue to use my voice to raise awareness and demand attention and funding from our government.

Because if not me, then who?