What is a Caregiver?

by Kathy Bosworth 

I have been pondering this question for a long time. What answer can one give to that simple statement? I checked my dictionary to find the definition. It is not listed in the dictionary. It seems to be a widely used word that has become part of our vocabulary, although the dictionary does not define it. The best I could find was the definition of care; being an object or source of worry, and caution in avoiding harm or danger, and protection with supervision. That is a good place to start.


My mother suffered a massive stroke and was either in the hospital, rehab, or a nursing home for the 15 months that followed. I didn’t think of myself as a caregiver at the time because the doctor’s, nurses, and aides were performing the medical care. But daily trips to visit, overseeing all aspects of her care, communicating with her doctors, and making the decisions became part of my life. After some time, nurses began to call me a caregiver. Was I?


I recently attended a stroke conference by the American Heart Association. After referring to myself as my mother’s caregiver, a beautiful, young woman approached me. She said, very politely, that she took issue with the fact that I called myself a caregiver. We talked for a while and she told me that she was a caregiver because she lived with her father after his stroke. She devoted her life to his care; which involved his feeding, changing, bathing, etc. Even though she was only in her early 30’s, she had already made the decision not to marry and probably never have children so she could give him her full attention. I agreed with her; she was a caregiver of the highest order and I was in awe of her dedication to her father. I am always in awe of the strength and devotion that caregivers provide. It was an interesting conversation with each of us giving our views on the subject.


Yet, many months later, her words still haunt me. Are there different degrees of care giving? Is it a matter of semantics? If someone devotes his or her life to the care of someone else it is, without a doubt, the true meaning of care giving. But, if someone does not live with the person physically, does that make him or her NOT a caregiver? What about the person that delivers a meal everyday to a shut-in?


I felt that my mother’s needs were the highest priority. Her medical needs were huge and I knew that I could not offer the care that a long term nursing facility could provide. Was that a cop-out? Maybe. But it was the way she wanted it and that’s the way it went. I make no apologies for the decisions I made. But, in the still of the night, when a little voice talks to me, I wonder if I have a handle on what 24/7 caregivers feel?


I do know that caregivers are the nearest and dearest people to my heart. They face many challenges each day. Let’s face it. Caregivers do not plan on being caregivers. It’s a job that sort of plops itself in your lap one day when you least expect it. Caregivers are often unprepared, untrained, and overwhelmed at the beginning. As their lives are turned upside down, they must learn quickly and act. It is perhaps one of the fastest on the job training sessions I have ever witnessed. Yet, people do it everyday with a little fear, and a lot of hard work and fortitude.


I am involved with the strokenetwork.com website. I asked this question on their message forum and got a variety of thoughtful, honest answers. The vast majority seemed to feel that a caregiver is whatever you think it is. Willy seemed to sum it up so well for me when he wrote, “You can define family caregivers by their emotions and their spirit, by the sadness in their eyes; but also by the determination in their hearts." Tom challenges the “neatly packaged, finely tuned definition for the term caregiver. It ranges from the 24/7 martyr to the next of kin that slough off their responsibilities yet brandies the title of caregiver.” He goes on to say that he believes in a “team concept of care giving.” With each family member giving what they can, one central caregiver does not own the title. Some people thought that being a Mom is the true meaning of a caregiver. The survivor’s answers seemed to be more of a thank God there are people that will step up to the plate and lovingly help.


Maybe we get a little bogged down by the titles we have. I could go on and on with the wonderful stories I have heard from caregivers that have been giving care for many years. I have heard the sacrifices they have made, all in the name of love. I have heard of their victories and their defeats. I am always inspired by their stories and their courage. But, is it black and white or are there some shades of gray? I am back to my original questions: Are there different degrees of care giving? Is it still clearly undefined? I have come to agree with Terry who wrote, “I feel that anyone that provides nurture, comfort and support on a personal basis is a caregiver”. She brings up a valid point when she goes on to say, “I also believe that the caregivers themselves must be cared for by the community of friends and acquaintances they have.” Truer words were never spoken.


If you know a caregiver; call them today and offer to help in one specific way. If you are a caregiver; please take the time to be good to yourself.



Kathy Bosworth is the author of "Your Mother has Suffered a Slight Stroke"



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