Inwardly you groan as you hear the beckoning call from the other room. You sigh and instantly feel guilty for the flash of inconvenience you just felt. You are the mother of a chronically ill child. That means that we both know how it feels to collapse at night both physically and emotionally exhausted but not be able to sleep a wink.
If you had asked me growing up what I wanted to be as an adult, I would have emphatically told you a marine biologist. Not once did the thought of going into the medical field EVER cross my mind. Passing out when my blood was drawn was a given and my gag reflex was easily triggered. Becoming a mom thickened my skin a bit. Catch vomit in my hands? Sure! Why not, right? Having a chronically ill child has thickened it to the point where you might as well turn me into a crocodile purse and parade me around during Fashion Week! I fear no bodily fluid or odor anymore.
All of sudden, I have a nursing job that I never wanted in the first place.
Let me be clear, I wouldn’t trade it or my child for anything.
Caring for the Chronically Ill is Exhausting
That may sound like an obvious statement, but please allow me to elaborate. Caring for the chronically ill is like running a marathon every single day with no option to opt out. There are no days off without serious coordination of care. You don’t have the luxury of just not wanting to. I am my daughter’s hands, her legs, and her voice. She counts on me to be the one that lifts her, transfers, washes, brushes her teeth, feeds her, clears her airway, changes her feeding tube, brushes her hair, fetches her drinks and toys, and every other task you could possibly imagine. In short, I am her everything. How can that not be beyond exhausting?
I am not complaining.
In fact, I am thankful for each and every single day I get to be this exhausted, because it means my child is still alive. With that said, it doesn’t change the facts. My right shoulder hurts from assisted walking with Bea and her legs gave out. I have hips that hurt from constant shifting, lifting, stretching, pulling and moving her. My necks hurts from tensing while bench pressing her eighty-one pound body up and into our van. That’s what comes with the territory of raising a child that is not able bodied. Her sound mind, keeps me on my toes though!
Wait. What if I was complaining? Is that so wrong?
If you reread that last paragraph, that’s a lot of aches and pains and those are just the physical ones. Parents are expected to be selfless, self-sacrificing, heroic, and all in. I’m not sure if it is society or ourselves that makes us feel as if we are to be martyrs for the blessing of being fortunate enough to be parents. After years of infertility, I know exactly how fortunate I am. With that said, I do not believe this cancels out all of the challenges that come with not just parenting, but parenting a chronically ill child. I do not believe there should be parent shaming for saying, “I love my child, but sometimes I resent the fact that they need me to be their everything.” That makes us HUMAN with REAL feelings and our own NEEDS. If those needs are not tended to, it will lead to burnout.
What? That wasn’t technical enough? Ok, well, here is the technical description from PubMed Health, which “is a service provided by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).”
“The term “burnout” was coined in the 1970s by the American psychologist Herbert Freudenberger. He used it to describe the consequences of severe stress and high ideals experienced by people working in “helping” professions. Doctors and nurses, for example, who sacrifice themselves for others, would often end up being “burned out” – exhausted, listless, and unable to cope.”
While it is now common to hear about career burnout or parenting burnout, the burnout I am referring to is much deeper than listlessness and frustration with where you are professionally and personally. Those two types of burnout may occur, and often do, simultaneously with addition of nursing care we do for our loved one. There are measurable consequences for those who care for those with chronic conditions, especially terminally ill ones. According to the article “Interventions to Manage Compassion Fatigue in Oncology Nursing,” in the Clinical Journal of Oncology Nursing, “Some common health problems associated with burnout are frequent insomnia, fatigue, headaches, backaches, lethargy, and high blood pressure.”
Avoiding Burnout as a Caregiver to the Chronically Ill
Ok, so we don’t want that. How do parents keep from getting burnout while caring for a chronically ill child?
Take the Caregiver Burnout Quiz and see if you should be implementing some of the above.