Beginning at the End:
Portraits of Dementia by Joe Wallace

© 2019 Joe Wallace

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John Hunziken

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The oldest of four, John Hunziker was born in Binghamton, NY in 1932. Eager to serve, he joined the Navy at 17 near the end of WWII. After spending three years studying at Syracuse University, the Navy called him back to serve during the Korean War. Following his discharge, General Electric offered John an engineering job, which he held for 41 years. While enlisted, he met his future wife Anne in New London, CT. They married in 1953 and had 2 children, Kathleen and David. John’s career took him back to Syracuse, then to Oklahoma City, and eventually Pittsfield, MA where they lived for 30 years before returning and retiring in New London.

 

Following his retirement, John spent 10 years as a Red Cross Disaster Relief Assessor, traveling to 18 disaster sites and spending 30+ days in relief efforts. John retired again to help manage a wave of chronic illnesses that invaded Anne’s life – ulcerative colitis, breast cancer and then multiple myeloma. During this period John was diagnosed with Alzheimer’s disease which eventually resulted in the surrender of his license and the pendulum slowly swinging to John needing more managed care than Anne. Several times during her illnesses and long hospital stays, Anne was not expected to survive but said that her love and concern for her husband contributed greatly to her multiple recoveries and her desire to help care for him as he had been her constant support through so many trials.

Anne told me, “I could die tomorrow if John died today. My goal is to outlive John. By one day or one hour – and that’s why I keep coming back. I’m strong enough to stand by him and I will!”

 

In 2016, John and Anne downsized from their 4-bedroom home of 20 years to an apartment, choosing to give up privacy and familiarity but also to give up the chores, repairs and expense. For the last four years, Kathleen has driven down from Massachusetts and lived with her parents in New London from Tuesday to Friday. She describes the challenge as trying to adjust to their declining physical and mental abilities as opposed to the work itself.

John, Anne and Kathleen’s partnership is extraordinary - their love, honesty and dedication apparent. Most important of all - they share the clear-eyed goal of living life on their own terms, with dignity and home intact.

 

I asked Anne how she would translate her journey with John into hope and advice for other families newly diagnosed with Alzheimer’s. Her reply, “Don’t do anything different. We carry on like we always have, just with more assistance now. We have dinner at the table. We take part. Sleep in your bed. Dress in your clothes.” Kathleen nodded her head and added, “Talk to the patient not about the patient. Don’t allow the diagnosis to become, or give away your identity.”