Alzheimer’s Care Takes a Village: Story #20
My wife, Linda, 78, passed peacefully in 2019 after an 11-year journey with Alzheimer’s disease had repurposed our lives. She was adopted at birth so our first clue of potential dementia risk surfaced following a successful search for her birth family in her mid-forties. That search revealed that her birth mother’s demise at 66 was attributed to early onset Alzheimer’s, preceded in death by both parents in the same Illinois state hospital in Kankakee where they were treated for dementia.
All but two of her birth mother’s six siblings presented dementia behaviors typically associated with Alzheimer’s. Learning the nature and extent of that family’s medical histories was foreboding.
We were to learn that Alzheimer’s disease would change who we were and our pathway forward. In the end, my soulmate, mother of our three sons and grandmother of nine became only a memory of who she had been. It started slowly and ended sadly.
Linda’s dementia was marked with many of the characteristic behaviors. I changed too, though not as obviously to those around me. Significant changes in me took a back seat while caregiving became front and center. Most difficult in the beginning was to fully understand a grieving process that began long before her passing. Some call it, “the long goodbye.”
I learned from Pauline Boss, an author and professor emeritus at the University of Minnesota, that I was suffering from “ambiguous loss.” Dr. Boss, now a friend, gave me the courage and wherewithal to reinvent myself. As widower, I now write and paint, finding life in the process to be full of joy and hope.
All but two years I cared for Linda at home largely by myself. Along the way, others made me realize Alzheimer’s takes a village. Throughout, we sought to educate ourselves about this disease and seek help from friends, family, adult day care programs and local organizations. I learned the value of respite when amazing friends regularly stayed with her to give me breaks.
She was diagnosed by Banner Alzheimer’s Institute in Phoenix where she received excellent medical care, participated in clinical trials and insisted on a postmortem biopsy at Banner Sun Health Research Institute that confirmed Alzheimer’s. Banner’s staff became like family to us with multiple levels of patient and family care. We felt proud to see them become internationally recognized for their groundbreaking initiatives.
Most difficult in the beginning was to fully understand a grieving process that began long before her passing. Some call it, “the long goodbye.”
After Banner came Mimosa Springs Assisted Living Alzheimer’s Community in Scottsdale. And, Finally, Hospice of the Valley provided professional and compassionate care for an extended period to insure her comfort, quality of life and our family’s peace of mind. Their end of life care was out of this world.
Additional resources available to us in the greater Phoenix area included Duet Partners in Health & Aging, Mayo Clinic and the Alzheimer’s Association where we both served on their Regional Leadership Council while she was still able. All provided wide-ranging physical, emotional and professional help through support groups, educational conferences and training. Yet, with many services available to us, it was my job to seek them out as her advocate.
It’s been said, “Everyone will one day become either a caregiver or be cared for by someone.” When my time came, caregiving became one of the most important and rewarding roles in my life. The ramifications of this disease on us personally took a while to comprehend. It was encouragement from our family that prompted us to follow up with Banner when Linda’s cognitive impairment became worrisome.
Our subsequent move to Arizona for the help needed was one of the wisest decisions we ever made in our 56-year marriage. It was our good fortune to seek and find the Valley of the Sun, a true mecca for dementia research, collaboration, education and support.
© 2023 Gerald Lloyd Wood. This story and accompanying art are used with permission of the author, Gerald Lloyd Wood.
Edited for op-eds in Arizona Republic azcentral.com and Scottsdale Republic “Your Turn” on 2/14 and 2/17/2021, respectively.
Boss, Pauline, Ph.D., Loving Someone Who Has Dementia. San Francisco: Jossey-Bass, 2011.