For six years, my mother-in-law battled a rare form of cancer, which led me and my husband to become her only family caregivers.
During this time, we dealt with every aspect of her care, including organizing home care services, ensuring she took her medications and ate nutritious meals, finding transportation to appointments, coordinated discharges, and making sure we knew the particulars of her various insurance coverages. Since both of us had full-time jobs in Boston and my mother-in-law lived in Florida, we handled all these responsibilities from hundreds of miles away.
Our caregiving story is not unique. More than 50 million Americans are the primary unpaid caregivers for their loved ones. Caregiving is, of course, the act of taking care of an aging or ill loved one, but it also worrying about parents who live far away, disagreeing with siblings about whether mom can stay at home or wondering if your loved ones’ health problems are a sign of something more serious. By this definition, millions more people are caregivers, whether they identify that way or not.
I felt that caring for my mother-in-law was a labor of love. But it was also exhausting because it truly was like another full-time job. The challenges that come with caregiving are constantly changing and aren’t easily solved. From talking with so many caregivers over the years, I’ve found that every caregiving journey is different.
What caregivers need is comprehensive support. Our system needs to do a better job of recognizing that caregiving is a holistic problem requiring a holistic solution. Figuring out what’s wrong means putting together all the pieces of the puzzle—the physical, mental, social and spiritual needs and preferences of the person being cared for, and the caregiver.
Recent research shows that during Covid-19, more than 3 million adults were forced to leave their jobs due to caregiving responsibilities. Overnight, family members became full-time caregivers and found they were not equipped to provide care at home, nor were they trained to be a caregiver. It was worse for people in the so-called “sandwich generation,” who felt the pressure to take care of their children and aging parents at the same time. It’s a combination that creates relentless, chronic stress, fatigue, anxiety and, ultimately, burnout.
My caregiving journey had a serious impact on my own mental and physical health. Thankfully, I work in the mental health field, and having someone available to talk to about my caregiving responsibilities, what needed to be done and where someone could step in to take things off my plate, helped immensely. I learned a lot about myself and realized I too needed support that was tailored to my unique situation. Online tools and resources, while helpful, didn’t really solve my problems.
One aspect of caregiving that does not receive enough attention is the impact it has on family dynamics. Any time siblings don’t agree on a caregiving decision there’s an opportunity for conflict—especially if one sibling is carrying the brunt of the responsibilities. This can lead to resentment, conflict and mental health challenges on both sides which can make the caregiving experience even more difficult.
Family caregivers dealing with sensitive family dynamics can benefit from a third-party who uncovers and resolves the complex emotional, social and clinical challenges that arise when caring for a loved one. Caregivers should feel heard, understood and supported when making tough decisions.
In my practice, I worked with an adult daughter who was the sole caregiver for her mother who was coping with diabetes, vision and cognitive issues. We spoke at length about her need to identify specific resources to help her mother live comfortably and what else she needed to be doing for her mother. After a certain point, it was clear that the daughter too needed help. She was experiencing depression and anxiety, and craved an outlet. There is an unspoken hidden lethality of caregiving; you give, give, give, and stop caring for yourself.
I often see signs of dissociation in caregivers. They stop connecting with the outside world, have a lack of energy, experience fatigue and insomnia, have drastic changes in eating habits, and experience anxiety and depression. There is also the psychosomatic impact of caregiving, physical conditions that manifest because of stress and or other mental factors. A lot of work needs to be done to educate caregivers, healthcare professionals and employers about the importance self-care to be able to care for others.
Caregiving is one of the most noble things a human can do. It is a humbling, taxing and tough experience that no one should have to navigate on their own. Providing patchwork backup care or logistical help is not the solution to a caregiver’s challenge. They need access to expert professionals who are uniquely capable of identifying key issues and working with families to develop sensible, practical, effective plans to solve these caregiving problems.
We need to take care of caregivers to ensure they have adequate resources, finances and tools to provide the best care for their loved ones, while ensuring they also prioritize their own well-being.
Photo: jacoblund, Getty Images
