Think of yourself as a “caregiver”

May 17, 2008 by  
Filed under Articles, News

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?

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