For more than a dozen years, I've wrapped my life around caregiving for my family, much of it in a very intensive, hands-on way. I've cared for my mom, who died in 2013; my sister Karen, who died in 2014; my dad's service dog (and my partner in caregiving), Mr. Jackson, who died, after a long illness, in 2017; and my dad, who had Alzheimer's disease, lived with me for six years and passed on a little more than two years ago.
Despite my valiant attempts to prepare for this post-caregiving phase of my life, I have been shocked at how difficult it has been. In fact, in many ways it has felt much harder than the years I was caring for my loved ones. The pandemic has also thrown a hitch in my healing process. Caregiving — especially the marathon of dementia caregiving — complicates the grief and recovery that follow the loss of loved ones.
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The end of my most important role
As Alzheimer's and congestive heart failure progressed for my dad, he was obviously worn out. I treasured every moment with him and brought him all the joy that I could, but I knew the end of his life was coming closer. In an effort to prepare myself, I haltingly allowed visions of my life after he died to squeeze themselves into my consciousness. But the truth is, no matter how exhausted I was, I didn't want to wholly embrace the thought that he might soon be gone. There was no way to fully prepare for this huge loss, nor the change in my day-to-day life.
Like many family caregivers, my role as caregiver for my parents had become an enormous part of my identity. It gave me a deep sense of purpose and, for so many years, was behind all of my personal and work-life decisions. Caregiving dictated where I lived, as I uprooted from the Washington, D.C., area in 2009 to establish a home in Arizona so I could care for my parents. My work focuses on family caregiving as well, and while work became respite, there was no escaping “caregiving” for me. My relationship with my boyfriend, Bill, changed, too, as our long-distance Baltimore–D.C. relationship became even longer distance. My friendships either adjusted or disappeared; my self-care routines were altered, and traveling for work became a way of life. The moment my dad died, everything changed.
Untethered by grief
I'm no stranger to grief, having lived through those losses as well as the loss of my 19-year-old niece to suicide in 2012; my grandparents; and so many other relatives and friends. With each of these losses, I grieved but also avoided the brutal abyss of loss by pouring myself into the care of others. My purpose was clear. But when Dad died, I was suddenly untethered — floating in the silence, struggling to grasp something that felt right and secure. It seemed like a free fall with no parachute, and I was so physically, mentally and emotionally depleted that I barely had the energy to get through the days, much less look for the reserve parachute. The first three months were the worst. My emotions fluctuated between numb, angry, sad, frozen, frustrated and lost. I concentrated solely on just getting through the days and escaping in work.
Embracing the changes in my role and my everyday life hasn't come easily. I've felt like my mind was a huge, 280-ton ocean barge that suddenly had to change course in the middle of a terrible storm, to accept that Dad was gone — that they are all gone — and chart a new course for myself. That barge doesn't turn quickly, and neither have I. I am just starting to emerge from the fog, more than two years later. My internal quest for joy, along with the importance of my family and friends, are the lighthouses that guide me.