Respite was key to this caregiver's journey

By Margaret Toman, Garner, NC

Alzheimer’s disease killed my mother at the age of 102 shortly before Christmas last December. She lived with me for 16 years after her diagnosis.

Five days a week I dropped my mother off at daycare and used the hours of respite to explore the meaning and purpose of my life outside of caregiving. Volunteerism, activism, writing, learning and community service were restorative bulwarks against depression and provided a bridge to a future when I would be alone. For me, respite was less escape from pain than it was engagement with possibility.

My caregiving challenges were primarily financial and physical. Financially, Social Security was my main source of income and did not stretch far enough. Physically, the multiple wheelchair transfers a day took a toll on my body when they became routine as my mother’s illness progressed. A seemingly endless series of crises arose which I dealt with as best I could, one at a time. I kept inviting people to lunch, trying to find a friend who would reach out after the lunch, who was not too busy to invest time and energy into building a friendship. I learned about the patience, forgiveness and forbearance required of a long-term caregiver.

Active in advocacy and community work over my caregiving years, I went to countless meetings attended by smart, good people trying to make a difference. They inspired me. I gave talks and wrote stories about my caregiving experiences that were published in various places. I enjoy meeting people and I met them everywhere. Still, when fears and uncertainties about my "labor of love" circled in my head during the wee hours of the morning, there was no one to call. I leaned on classical music, challenging crossword puzzles, my ever-purring cat Velcro, and books about space and time that I struggled to understand while at the same time, understanding well that Alzheimer’s disease is a universe without time, and no place to travel alone.

With my mother’s passing, I am the only remaining member of my nuclear family, a member of a burgeoning group in our culture known as “elder orphans.” Like many of them, I am in financial circumstances that present troubling questions regarding my future. Dental care, finding affordable housing and healthcare – all present significant challenges. For the moment, I am wending my way through both gratitude and grief, actively engaging my community, continuing to write, continuing to reach out and trying not to be afraid.

Lunch anyone?

Editor's note: There is a "best in class" and the only state- funded, dementia-specific, support program for caregivers who take care of family members that provides respite to Alzheimer's caregivers. Project CARE (Caregivers Alternatives to Running on Empty) needs additional funding. Tell your lawmakers in Raleigh that you support family caregivers.