En español | 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.
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.
A long road back
I'm fully aware that there is no timeline for grief, no “right” path. I've consciously been patient, allowing myself to alternately avoid thinking about it or wallow in the sadness. I've felt extremely vulnerable. My confidence, in all areas of my life, has faltered.
Many people seemed to expect me to “bounce back” quickly and easily. Even those who work in the aging and caregiving field have been surprisingly insensitive about this transition. They seem to think I'm “done” with caregiving, so my stress and time limits must have lifted. A caregiver's role doesn't end when loved ones die; the ties are still there. The role just changes, as grief, recovery and estate-management matters appear.
One person even tactlessly said to me, immediately after Dad died, “You must be so relieved.” Not so. While caregiving had been a huge challenge, I truly never looked at caring for him or any of my other family members as a burden. Regardless of their age, health issues, cognitive abilities or how difficult it was to care for them, I've still loved them all, and I'd still rather be with them. I'm relieved for all of them that they are no longer in pain or confused, but for me it's just an agonizing loss.
The aftermath of caregiving: repercussions
Because of my professional background in this area and more than 35 years of caregiving, I've been well aware of the importance of prioritizing care for myself, too. I had thought that when caregiving ended, I would just go to the beach and sleep for days on end. But the reality is, life goes on. I had to work and travel and deal with the aftermath of caregiving, including crippling financial challenges.
For the first year, I was constantly sick, which made all the other aspects of grief and recovery more difficult. My doctors told me that my adrenals and immune system had been compromised by prolonged stress. I was physically, emotionally and mentally depleted. Once caregiving let up, I crashed.
My dear friend Kathy said to me, “Aim, you've been pushing yourself so hard for so long, I'm afraid you don't know how to stop.” Indeed, allowing myself to relax and accept downtime has been extremely challenging.
Ironically, the COVID-19 pandemic has forced me to do so. I was in Arizona when lockdowns came about, and I've stayed put for eight months — the longest I've been in one place my entire adult life. In the beginning I felt increased stress regarding work, being separated from my boyfriend, being stuck at home and protecting my sister Linda (who is in the high-risk category for COVID-19). Eventually I found my way to acceptance and peace with the situation.
Perhaps it took a pandemic for me to slow down, sleep more and take care of myself, too. In many ways I feel like I've weathered the pandemic with my parents — in the house where they lived for so many years. I've felt their comforting presence, urging me forward in life.
Finding joy again
After I lived with my parents, the house was so very, very empty. Dad was gone, as were all of the paid caregivers, practitioners and even Linda, who lived with us four days a week. Dad's bedroom remained untouched until just a few weeks ago. After he died, I sat in his chair and cried every night for a long time. Hours alone in the house, especially weekends when I was usually alone with Mom and Dad, were excruciating.
When I was caregiving, I focused on ways to “fill my tank,” so I had the internal fuel to keep going. But when Dad died, I stopped doing that — a huge mistake. I've now realized that was a life lesson, not just a caregiving philosophy. So I'm back to consciously doing things that fill me up physically, mentally, emotionally and spiritually, like scheduling time for relaxation, exercise, meditation and creativity (I'm making a vision board for my future) and noticing the simple things like the beauty of the flowers I planted and a enjoying a good cup of coffee while video chatting with a friend.
I've come to realize that I successfully learned to focus on creating joy in being with and caring for my loved ones. Once they were gone, I stumbled, longing for that joy but struggling to re-create that feeling. I'm working on opening my heart to other things that bring me joy. But I grapple with feeling guilty about happy moments, as I don't want to diminish my deep grief and how important my loved ones remain to me.
Despite these challenges, I am inching forward, as my new course slowly reveals itself. My creativity is bubbling up again. Increasingly, I have moments when I think about those who have passed on and I smile first, before I feel sad. I'm starting to feel more comfortable getting excited about the future, embracing the many things I have to look forward to — most especially finally being able to be with my very patient boyfriend after a 14-year long-distance relationship. This week I finished a cross-country drive so I can be with him and we will start renovations on a house together.
I still hope to get to the beach and sleep for days on end. But until I can manage that, I'm trying to replenish myself in other healthy ways such as eating better, sleeping more and addressing health issues.
The best way I can honor my loved ones is to go forward through the next phase of my life, even if it's complicated by the pandemic, just as bravely as they did, throwing myself into it as joyfully as I cared for them.