For six years, my mother-in-law battled a rare form of cancer, which resulted in my husband and I becoming her sole family caregivers.
During this time, we took care of all aspects of her care, including arranging home care services, making sure she took her medications and ate nutritious meals, finding transportation to going to his appointments, coordinating time off and making sure we knew the details of his various insurance coverages. Since we both had full-time jobs in Boston and my mother-in-law lived in Florida, we had all of these responsibilities from hundreds of miles away.
Our caregiver story is not unique. More than 50 million Americans are the primary unpaid caregivers of loved ones. Caregiving is, of course, the act of caring for an aging or sick loved one, but it is also worrying about relatives who live far away, disagreeing with siblings that Mom may be staying home or wondering if your loved ones’ health issues are a sign of something more serious. By this definition, millions more people are caregivers, whether or not they identify as such.
I felt caring for my mother-in-law was a labor of love. But it was also exhausting because it was really like another full-time job. The challenges that come with caregiving are constantly changing and not easy to solve. After talking to so many caregivers over the years, I’ve discovered that every caregiver journey is different.
What caregivers need is comprehensive support. Our system needs to better recognize that caregiving is a holistic problem requiring a holistic solution. Figuring out what’s wrong means putting all the pieces of the puzzle together – 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 out of their jobs due to care responsibilities. Overnight, family members became full-time carers and found they were not equipped to provide care at home, nor trained to be carers. It was worse for people in the so-called “sandwich generation”, who felt the pressure of caring for their children and their aging parents at the same time. It’s a combination that creates relentless and chronic stress, fatigue, anxiety, and ultimately burnout.
My journey as a caregiver has had a serious impact on my own mental and physical health. Luckily I work in mental health and having someone to talk to about my caregiving responsibilities, what to do and where someone could step in to help me relief has helped me enormously. I learned a lot about myself and realized that I too needed support 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 its impact on family dynamics. Whenever siblings disagree on a care decision, there is potential for conflict, especially if one sibling bears the brunt of the responsibility. This can lead to resentment, conflict, and mental health issues on both sides, which can make the caregiving experience even more difficult.
Family caregivers struggling 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 need to feel heard, understood and supported when making difficult decisions.
In my practice, I worked with an adult daughter who was the sole caretaker of her mother who suffered from diabetes, visual and cognitive impairment. We talked at length about her need to identify specific resources to help her mother live comfortably and what else she needed to do for her mother. After a certain point, it was clear that the girl needed help too. She suffered from depression and anxiety and needed an outlet. There is an unspoken hidden lethality of caregiving; you give, give, give and stop taking care of yourself.
I often see signs of dissociation in caregivers. They stop connecting with the outside world, lack energy, suffer from fatigue and insomnia, drastically change their eating habits and suffer from anxiety and depression. There is also the psychosomatic impact of caregiving, physical conditions that manifest due to stress and/or other mental factors. Much work remains to be done to educate caregivers, health professionals and employers about the importance of taking care of yourself in order to be able to take care of others.
Caregiving is one of the noblest things a human being can do. It is a humbling, trying and difficult experience that no one should have to go through alone. Providing disparate emergency care or logistical assistance is not the solution to a caregiver’s challenge. They need access to expert professionals who are uniquely able to identify key issues and work with families to develop sensible, practical and effective plans to address these caregiving issues.
We need to take care of caregivers to ensure they have the right 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