I started my journey as a family caregiver 21 years ago as I helped my mom care for my dad, who was diagnosed with bone marrow cancer in 1990.
Mom went from loving spouse to caregiver as his condition worsened. Dad passed away a year later and immediately afterwards, Mom became caregiver for her parents who were living with cancer, Alzheimer’s and strokes. Although I was living out of state, I would return home once every six weeks for a few days to help in whatever way I could.
Late in August 1994, I was able to spend two weeks back home. Within hours of returning home, I was racing around town helping Mom do all she needed to do as family caregiver. We were making midnight dashes to the hospital and life-and-death decisions for both grandparents.
The evening before I was to leave, I told Mom that I was grateful to be able to come home during this time of overwhelming challenges. She didn’t understand what I was trying to say, because what was for me the most intense, scary and sleepless two weeks of my life was for Mom just a regular two-week period in her life as a caregiver. This is a story to which every caregiver can relate.
Stress of caregiving
According to an AARP study, if a caregiver does not reach out for help, they cannot be as effective as possible in their caregiving role, are less likely to navigate the complex health care system, and are more prone to physical and mental illnesses. In the most disconcerting statistic, a recent Stanford study concluded that nearly 40 percent of caregivers will die from stress-related disorders before their loved one dies.
Then why do we do it? The answer is simple: because our loved ones need us. So, how do we go from being a dedicated daughter, son or spouse to being a dietitian, psychologist, pharmacist and incontinence specialist?
We have actually found significant common traits among the most successful family caregivers. First, they believe that they can make a difference. Second, they see their role in their loved one’s care as being just as important as any other member on the care team. Third, they ask lots of questions and do not easily take “no” for an answer.
The most important thing we can do for our loved ones turns out to be the hardest for so many of us; we need to learn to care for ourselves. Unfortunately, many times a caregiver’s reaction to the concept of self-care is “Who has time to care for me? I spend all my time caring for my loved one.”
Anytime I hear that reaction, my answer is, “OK, but who will care for you AND your loved one when you take ill due to not caring for yourself as well as you care for your loved one?”
We must learn all we can about the disease or illness that our loved one is battling; in this case, knowledge truly is power. But we must also learn all we can about our role as caregiver. When it comes to caregiving, knowledge is truly power.
Gary Barg is founder and editor-in-chief of Today’s Caregiver magazine and caregiver.com as well as the author of the book “The Fearless Caregiver.”He will be hosting a Fearless Caregiver conference May 19 from 8 a.m. to 2:30 p.m. at the Ramada Mall of America in Bloomington. Minneapolis Area Agency on Aging will provide limited complimentary tickets to family caregivers for the event. To register, call (877) 829-2734 or go here.