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Since my mother was diagnosed with a malignant brain tumor, her care, and everything that goes along with that care, has consumed my family.
It is a journey we have chosen to undertake, but one we were pitifully unqualified for. As a result, we have had to learn to navigate the health care system and all that it entails in just a few short weeks.
When a loved one receives a diagnosis like this, you have to become a quick study in everything from filling out mountains of medical paperwork to how to navigate the complicated world of health insurance. This is not something a person facing this diagnosis can deal with.
My husband and I have had to research what Medicare, Blue Cross Blue Shield and longterm care insurance will pay for. We have navigated the complicated process of getting home health care resources like a hospital bed, and home health care providers, like a physical therapist.
In addition, as a caregiver to someone with a terminal illness, one has to manage the complex and ever-changing list of medications that must be given in specific doses and at specific times throughout the day.
This is in addition to the basic care you must provide - feeding, bathing, dressing, and transporting to doctors' appointments.
Throughout the process, I have wondered how people who don't have a family member to do all of this can make it through. It makes me so sad to think of someone going through this all alone. It is unimaginable, frankly.
My mother took care of me for 45 years. Now it is my turn to care for her. It is not a job I applied for, but it is one I do with my whole heart. Prior to this I was training for a marathon, a friend told me that now, instead, this journey is my marathon.
I haven't trained for it, but I am determined to make it to the finish line.
Amanda is the mom of two, a reporter for WRAL-TV and the author of several books including three on motherhood. Find her here on Mondays.
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May 17, 2012 1:09 a.m.
I lost my mother when I was 24 to a malignant brain tumor and our family pulled together to take care of her and make sure she did not live her last days in a nursing facility. I was actually in college at the time and during her illness, my father suddenly passed away from a heart attack, leaving just myself and two older sisters to care for my mom. Even though one of my sister's is a nurse and I was in school studying to be a social worker, nothing in life prepared me for that journey. It's been 22 years since I lost my mom and I can tell you that even though this is a tough time for you and your family, you will never have regrets for being her caregiver. I encourage you to take one day at a time and not let the details rob you of precious time you have left with your mother. Learn about caregiver burnout so it doesn't happen to you and focus on this time with your mother and not let the details of navigating the system, rob you of this precious time you have left with her
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