For six years, my mother-in-law was battling a rare form of cancer that made my husband and I her only family caregivers.
During this time, we handled all aspects of her care, including organizing home care services, making sure she was taking medication and eating nutritious meals, finding transportation to appointments, coordinating discharges, and making sure we understood the details of her various insurance coverages . Since we both have full-time jobs in Boston and my mother-in-law lives in Florida, we handle all these responsibilities hundreds of miles away.
Our nursing stories are not unique.more than 50 million Americans Be the primary unpaid caregiver of a loved one. Nursing is of course the act of caring for an elderly or sick loved one, but it is also worrying about parents who live far away, disagreeing with siblings over whether mom can stay home, or wondering if your loved one’s health problems are more serious signs of things. By this definition, millions more are caregivers, whether they agree or not.
I feel caring for my mother-in-law is a labor of love. But it’s also tiring because it’s really like another full-time job. The challenges posed by nursing are constantly changing and not easy to solve. Talking to so many caregivers over the years, I have found that every caregiver journey is different.
Caregivers need comprehensive support. Our systems need to better recognize that caregiving is a holistic problem that requires a holistic solution. Identifying the problem means piecing 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 During Covid-19, more than 3 million adults have been forced to leave their jobs due to caring responsibilities. Overnight, family members became full-time caregivers, only to find they were incapable of providing care at home or trained as caregivers. It’s even worse for the so-called “sandwich generation,” who feel the pressure of caring for children and aging parents at the same time. This combination creates relentless chronic stress, fatigue, anxiety, and ultimately burnout.
My caregiving journey had a serious impact on my own physical and mental health. Thankfully, I work in the mental health field and having someone I can talk to about my care responsibilities, what needs to be done and someone who can step in to ease my load has helped me tremendously. 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 problem.
One aspect of caregiving that is underappreciated is its impact on family dynamics. Anytime siblings don’t agree on a care decision, there is a potential for conflict — especially when one sibling bears the brunt. This can lead to resentment, conflict, and mental health challenges on both sides, making the care experience more difficult.
Family caregivers dealing with sensitive family dynamics can benefit from a third party that identifies and addresses the complex emotional, social and clinical challenges that arise while caring for a loved one. Caregivers should feel heard, understood and supported when making difficult decisions.
In my practice, I work with an adult daughter who is the sole caregiver of a mother dealing with diabetes, vision and cognitive issues. We talked in detail about her need to identify specific resources to help her mother live a comfortable life, and what else she needs to do for her mother. After a while, it became clear that the daughter also needed help. She is experiencing depression and anxiety and is longing for an outlet. Nursing has an unspoken hidden lethality; you give, give, give, and then stop taking care of yourself.
I often see signs of separation in caregivers. They stop contacting the outside world, have low energy, fatigue and insomnia, drastic changes in eating habits, anxiety and depression. Caring, physical conditions manifested due to stress and/or other mental factors can also have an impact on the mind and body. Much work needs to be done to educate caregivers, healthcare professionals, and employers about the importance of self-care for being able to care for others.
Caring is one of the noblest things a human being can do. It’s a humbling, onerous, and difficult experience that no one should navigate alone. Providing patchwork back-up care or logistical help is not the solution to the challenges carers face. They need access to unique experts who can identify critical issues and work with families to develop smart, practical, and effective plans to address these care concerns.
We need to care for carers to ensure they have the resources, funds and tools to provide the best possible care for their loved ones, while ensuring they also prioritise their own wellbeing.
Photo: jacoblund, Getty Images
