Dehydration and chronic fatigue. That was the diagnosis the doctors at Good Samaritan Hospital gave me when my friend rushed me there in 2011 after insisting I seek medical treatment. This followed several days of insomnia, sensitivity to light, intense headaches and unquenchable thirst. I knew I was tired—hell, I knew I was exhausted. I’d felt this way before —many times. But I didn't realize it had gotten so bad that I was making myself sick.
Still, while lying in the hard, inflexible hospital bed, I wasn’t preoccupied with worry for myself, or even concern for how I was going to get better. I was consumed by guilt. Guilt that, while I was in the hospital, I wasn’t able to be the caregiver I needed to be for my disabled mother.
I shifted my plans to attend graduate school in California and returned home to New York to be my mother’s primary caregiver. I was 22 years old.
My beautiful mother was diagnosed with Progressive Multiple Sclerosis (MS) in 1982, although the first symptoms—numbness and tingling in her fingers; muscle spasms in her lower back; and intermittent spells of blurred vision—appeared as early as 1971. My two younger siblings and I have watched this wretched disease rob our mother of her ability to walk, work and engage in many of the activities that once brought her joy. Walking in the park, writing, and reading her romance novels eventually became things of the past. The first significant progression that impaired her signature graceful gait required her to begin intense physical therapy while I was in college in 1994.
By the time I graduated just two years later, she couldn’t walk without the support of a cane. My siblings were starting college at that time, so, as the eldest, I shifted my plans to attend graduate school in California and returned home to New York to be my mother’s primary caregiver. I was 22 years old. Although I had looked forward to starting my adult life on the West Coast, I was raised in a family—like many other Black families in the U.S.—that took care of one another in every way, regardless of the sacrifice. I was concerned about her health and wanted to be there to take care of her, whatever it took.
Although I had looked forward to starting my adult life on the West Coast, I was raised in a family—like many other Black families in the U.S.—that took care of one another in every way, regardless of the sacrifice.
Related: Download a free caregiving guide from AARP and connect to online resources
As is the case for many caregivers, I began my journey without a handbook or model of how to do it right or how to balance caregiving with self-care. According to a study by the National Alliance for Caregiving and AARP, unpaid family caregivers number 53 million in the United States. Many are thrust into this role without preparation, and Black women—beholden to gender, racial and ethnic conditioning about the role of caregiver—are often expected to carry on legacies of caring for loved ones.
Black women—beholden to gender, racial and ethnic conditioning about the role of caregiver—are often expected to carry on legacies of caring for loved ones.
Navigating the complexities of caregiving while balancing our own professional and social lives can also engender what’s called caregiver guilt. Caregivers experience this distinct type of guilt when we believe we aren’t doing enough for our loved one and we regret taking time to focus on ourselves. This guilt often compounds the existing stress of caregiving and can complicate the relationship with our loved one.
I struggled to balance my burgeoning social work career and my bustling post-college social life when I took on this role. Burnout was inevitable, and I found myself crying to my therapist during those moments when the guilt was too much. At moments I felt like I was trying to give from an empty cup, and eventually I just wanted to give up. My therapist encouraged me to rediscover what experiences, activities, and people brought me joy and commit to engaging in them without guilt or apology. I jumped right in and compiled a list. Travel was at the top of that list.
Navigating the complexities of caregiving while balancing our own professional and social lives can engender what’s called caregiver guilt. Caregivers experience this distinct type of guilt when we believe we aren’t doing enough for our loved one and we regret taking time to focus on ourselves.
My unwavering wanderlust was inspired by my paternal grandmother’s world travels in my childhood. A woman of modest means, she taught me that I could go anywhere I wanted to as long as I saved up enough money to do so and didn’t exceed my budget. That, tempered with performing with my childhood dance school throughout the United States and Europe, fertilized a deep passion for travel that remains with me. Still, I just never felt like I had the time or the liberty to get away.
My mom endured another devastating milestone in her MS journey in 2005 when she could no longer walk and had to retire early from her job of more than 20 years. This development, of course, increased the demand for hands-on care. Sprinkle in a series of infections that stretched out until 2008, and we both were bone-weary. A good friend witnessed the toll all of this took on me and suggested I take a trip for respite and renewal.
“Dawn, for years you’ve said you want to visit Costa Rica one day. Let's go!” said my dear friend. “Girl, that sounds wonderful, but I don’t know if I can go out of the country anytime soon. Mommie is just coming out of an MS exacerbation,” I replied. “Didn’t your therapist encourage you to do things that bring you peace and joy? And isn’t travel at the top of that list?” she countered.
She got me. I couldn’t dismiss my therapist’s advice, especially because I, too, am a therapist and suggested the same to many of my own clients. Within three days of my friends loving nudge, we booked an 8-day journey to Costa Rica.
I was fraught with guilt at the thought of leaving the country for eight days. Will Mommie be mad if I go away? What if something happened while I was too far away to resolve it?
As excited as I was to finally be able to visit “The Rich Coast”, I was also fraught with guilt at the thought of leaving the country for eight days. Will Mommie be mad if I go away? What if something happened while I was too far away to resolve it?
To ease some of this guilt, I enlisted the help of my cousin to care for my mom while I was away. By 2008, Mom was receiving home health care for a few hours each weekday. But I needed to find coverage for overnights. My cousin agreed to spend the night at our house while I was away. I stocked the fridge with my mother’s favorite yummies and drinks, refreshed the bedroom to ensure her comfort, and left her a few thank you gifts she could enjoy during the week. I trusted my cousin and knew I could depend on her.
My friend and I had a blast in Costa Rica! We danced to calypso with the locals in the streets of the capital, San Jose. We swam in the balmy blue Caribbean Sea after arriving in the quiet coastal town of Cahuita for most of our stay. We devoured the decadent chifrijo (fried pork with red beans) and patacones (fried plantain) prepared by our hosts. And we played with the adorable sloths at a local nature center. As our bungalow was steps from the ocean, I was serenaded by the songs of the sea throughout the day, most significantly as I drifted into the most restorative sleep each night.
By the time we headed back home to New York, my cup runneth over, and I couldn’t wait to share the sweet stories with my mom. I returned home to New York well-rested, relieved, and ready to infuse that energy into my daily life, including my caregiving responsibilities.
Much to my surprise, when I arrived home in the middle of the night, I noticed my cousin’s car wasn’t parked in front of my house. As soon as I walked in the door, I asked mom where she was; and mom said she told her to go home on the second day because she would be “fine.”
Fine?! How would you escape the house in the middle of the night if there was a fire? Who would set you up with extra blankets if the house lost electricity? Who would help you transfer to your wheelchair from the bed if the pressurized mattress deflated due to said lost electricity? My brain was on fire and the guilt rushed back in.
I immediately questioned my judgment about leaving in the first place. As much as I recognized that Mommie is a grown woman with full agency over her life, I was frustrated with her for resisting the support that would ensure her safety. I was disappointed in my cousin for honoring my mother’s request to go back home. Didn’t she agree that my mother shouldn’t be left alone at night?
I decided to talk it out with my therapist. I didn’t want to be held hostage by the guilt anymore or have it negatively impact my mental and emotional health. And I definitely didn’t want to end up in the hospital again.
My frustration wouldn’t allow me to process any possible answer to this question. None would have made sense at the time. After several days of writing out my feelings in my journal, I shifted into an empathetic space and understood my mother’s resistance was rooted in her desire to exert independence wherever she could and to not place any burden on our family for her care. I also realized—and respected—my cousin’s decision to honor my mother’s request to go home. During a vulnerable conversation with her about what happened, she told me she only left after Mommie agreed to daily check-ins via phone. My cousin also playfully reminded me that we were raised by a formidable Southern grandmother who taught us to respect our elders at all times.
I understood, but the guilt did not dissipate. I even felt guilty about feeling guilty because I had a wonderful time in Costa Rica with my friend. I was awash with this guilt, trying to unpack it on my own. After a few weeks of riding this emotional roller coaster, I decided to talk it out with my therapist. I didn’t want to be held hostage by the guilt anymore or have it negatively impact my mental and emotional health. And I definitely didn’t want to end up in the hospital again.
My therapist encouraged me to identify coping practices that would help minimize and extinguish the guilt whenever it would arise. The most significant tool I use is a regular personal check-in.
My “guilt-be-gone” toolbox also includes affirmations, various forms of meditation, journaling, and asking family and friends for support with caregiving.
Anti-burnout tool: personal check-ins
When I am aware that I’m feeling guilty, I check in and ask myself: “What exactly do I feel guilty about?” After authentically reflecting on my responses, I write down why I believe I’m feeling guilty. At different times I have discovered the guilt was rooted in my beliefs that I have to be the perfect daughter and caregiver; I am the only person who can ensure all of my mother’s needs are met; and that my mother’s needs should always be prioritized over my own. These personal check-ins allow me to examine the situation, interrogate the validity of the thoughts and their impact on my mental health, and form new beliefs that illuminate the positive aspect and quiet the negative thoughts.
My “guilt-be-gone” toolbox also includes affirmations, various forms of meditation, journaling, and asking family and friends for support with caregiving.
The caregiving journey has changed my life, and my own experiences have made me that much more present and empathetic to the people I work with as a therapist, social worker and caregiver advocate in my own business. When people trust me enough to share their experiences of caregiver guilt and burnout, I offer support and resources accompanied by an assurance that I understand their plight based on my own lived experience.
You may not always be able to prevent guilt about the intersection of your caregiving responsibilities and your personal and professional life. It’s ok to fail sometimes. I had to remember that, and I want you to remember that, too. But leaning into these restorative practices – and showing yourself some grace – can make all the difference.
