Learning to Dance in the Rain – A Story of Unexpected Caregiving
Guest article by Connie Goldman
I met Julie and Tom shortly after Julie was diagnosed with younger-onset Alzheimer’s disease at age 57. Theirs is a story of a lifetime of devotion to one another.
Julie and Tom knew each other in high school. Both played trumpet in the school band. During rehearsals he would blow her kisses.
They married young. Julie was a National Merit scholar, started her own consulting business, and Tom had a well-paying job.
Julie began noticing that it was taking her hours to get a presentation together, something that used to take her no time at all. It was a sad day, weeks later, after a good deal of testing, when they heard the doctor’s words, “So sorry to tell you, it’s early-onset Alzheimer’s.”
Julie and Tom discussed their future. They decided he would be her full-time caregiver. They sold their home and moved into an apartment. Tom resigned from his job. He also accepted the job of onsite caretaker of the apartment building they were living in.
Although, both of their parents strongly disapproved of him giving up his well-paying job to care for Julie, they carried on with their plans. Tom’s gift to his wife was being her caregiver for as long as possible.
They did almost everything together from attending classes for younger-onset Alzheimer’s patients to watching long television programs, which often were hard to follow because Julie would forget how they began. She finally gave up driving when she got lost driving to her yoga class.
Tom takes care of the apartment building while Julie is sleeping or has a friend visiting. They discuss their situation each day, as Julie’s health is constantly changing.
The last time I visited with Julie, she said:
Tom and I talk regularly about what I’m now having trouble doing by myself as well as what I need help with. I’m still able to have intelligent two-way conversations about such things. My husband and I are having a really huge role reversal. I used to be the one in charge, and now I’m not capable of that any more. Tom is pretty much in charge now, and I’m not used to that, yet. I can’t believe that my husband, who I thought was so dependent upon me, is now strong and confident and taking care of me. We cry together, and he holds me. That comfort and closeness is so important for me.
Both Julie and Tom both know that a time will come when they’ll need others to help care for her. They both know that with Alzheimer’s the rate of decline is individual and unpredictable. When I left their home at the end of my last visit, a quote by Vivian Greene came into my mind. “Life is not about waiting for the storms to pass. It’s about learning to dance in the rain.”
Connie Goldman is an award-winning radio producer and reporter. Her books, and speeches are exclusively concerned with the changes and challenges of aging in America. Grounded in the art of storytelling from hundreds of interviews, her presentations are designed to inform, empower, and inspire. Formerly on the staff of National Public Radio, Connie’s message on public radio, in print and in person is, “Any stage of life can provide opportunities for new learning, self-discovery, spiritual deepening, and continued growth.”