Think of yourself as a “caregiver”

One year ago when I arrived at my aunt’s house to care for her, I thought of myself as her niece and friend. I was there to help my aunt as she battled breast cancer. Around the house, she had some books entitled something like, “Rights of caregivers.” She had picked them up during her vigilant, 7 week, attempt at helping the hospital professionals work with her husband after heart surgery. In her words, ” he was not helping the professionals, nor was he helping himself recover.” He died just a few weeks before my aunt found out that her breast cancer had returned. During that time, she got 10 of those books for herself and her children and step children. In reality, she had been her husband’s caregiver for years and years. In all those years, she never verbalized her role as “caregiver.” From my discussions with people caring for family members or friends, most consider themselves someone helping the one they love in a time of need.

To those of us helping our loved one through difficult times, a caregiver is someone you hire to help if don’t have the time or skills to care for your loved one. I remember early on my aunt said, “have you seen or read the caregiver book I got during Bill’s illness?” Why would I need to read such a book, I was her niece helping her because I had the time and I loved her. I was not her caregiver. It really did not hit me until about 6 months in that I realized, but never verbalized, that I was her primary caregiver. I was there 24 hours a day. I slept with a baby monitor so I could her if she got up in the night and needed help. I had to make sure she ate and drank correctly. My cousins became her caregivers, more than her daughters. Not by choice, but by circumstance. It was not until my aunt died that I realized what a toll those 8 months had on me mentally and physically. Maybe if I had read the book on the Caregiver Rights and then looked up information about “caregiving” in general, and more specifically the role and demands placed on a “caregiver,” I may have taken better care of myself.

I believe that until those of us that take care of those we love begin to verbalize our role as “caregiver,” not niece, husband, etc., we will not receive the recognition as a powerful enough group to force legislators, policy makers, and insurance companies to address issues directly related to our needs and the needs of those we care for. More importantly, I have found there is not a group labeled “caregivers.” Instead there are autism caregivers, alzheimers caregivers, aging parents caregivers, spinal chord injury caregivers, and on and on. It is true that each of those categories of caregivers may have different challenges and rewards related to the difficulties that their loved ones face. However, I would guess that there are more similarities in how the specific tasks associated with the caregiving duties impact the mental, physical, and emotional well being of the one caring for their loved one; “the caregiver.” If we split up into factions of caregivers, no one will get enough resources to make a major difference. How many of you have had a difficult time using the term caregiver instead of husband, wife, daughter, friend, niece, etc. Yet, if we could bring ourselves to view ourselves as “caregiver,” we probably would take advantage of the services offered for caregivers and be able to identify and lobby for other services that we need to better care ourselves and our loved ones. What are your views on this topic?

Becoming a caregiver

When I was 18 my grandfather was diagnosed with cancer. I visited a few times and I could not handle seeing him as he shrunk and became someone else. I was asked to give him shots because I had learned to give shots on animals. I could not. After he died my grandmother told me that he was always wanting to know where I was, why I was not coming. She was disappointed in me but understood. She had cared for both of her parents until they died. I made a promise then that I would never runaway from a person who was in need, especially someone in dire need of support like my grandfather. Over the next 30+ years, I kept that promise but was never tested like I was when my grandfather was sick. When I was growing up, my grandfather was always watching over me. He was always nice to me. Without my grandfather, my grandmothers, my great aunt, and my aunt as role models and protectors, I may not be who I am today. So when my aunt called to tell me that she was diagnosed with breast cancer again, I knew what I had to do. Not because I had to because of my promise, but because she was my rock, my loving, caring friend.

She had just lost her husband after a surgery just 2 weeks before she was diagnosed. It was unexpected and she was drained after driving back and forth for 7 weeks to be at the hospital with her husband every day. I knew that she was having trouble dealing with everything that she had been dealt in 2 1/2 months. But she never complained and she continued to be the center of her daughters and grandchildren’s world. When she called, she reminded me that we knew this could happen again. She had been estrogen positive and lots of lymph nodes were effected the first time. She had been caregiving her husband for years. But it was intense for 6 or 7 months prior to her diagnosis. I now know from doing some research that many caregivers become ill because they do not take care of themselves. Stress can lead to all kinds of physical and mental problems as well as disease. She always put others first.

I made my decision as soon as she told me. I had known when she called in April that I was losing my job as a professor and would be unemployed in May. I had focused so much on my teaching and the students that I did not publish enough (another story). I knew as soon as I hung up the phone that I was going to go to WA after graduation and do whatever she needed from yard work to medical care. I had made the decision that I would be a primary caregiver. I was lucky in a way. I know that many people become caregivers out of circumstance, not choice. I truly feel for those who end up being family caregivers due to unforseen circumstances. Actually, I have been put into that role with my parents in the last 3 weeks. The entrance into this caregiver role seems so different than when I chose to put my life on hold to be my aunt’s caregiver out of love and respect for one of the most important people in my life.

I had no idea what being a caregiver meant but I was committed to making sure that my cousins did not have to quit their jobs and that she did not have people taking care of her that she did not know. My role ended when she died at home about 3 months ago. I will never regret my decision. I am a different person because of the decision. But I wonder how I would have felt if the role lasted longer or I HAD to be a caregiver because of family circumstances. Not just a caregiver but a primary caregiver who spent nights listening to a baby monitor and most days silently communicating through body language and room atmosphere over the drone of the TV.