This 13-Year-Old Caregiver’s Essay Will Amaze You


We at the American Association of Caregiving Youth (AACY) are so blessed with an amazing team of caring people. Most of us have been either a youth or an adult caregiver; though they may never have viewed themselves that way until one day, when the light bulb of their past flickers back on.

One member of our team has delayed attending law school and returned to South Florida to help her family cope with her dad's early onset Parkinson's disease and ease the burden for her teenage sister. Her sister, Azarra, submitted a poignant essay as part of a homework assignment. Excerpts from her essay are captured below:

Imagine watching a man who used to be strong and confident decay slowly into a shadow of what he once was. Imagine watching him lose the freedoms he had enjoyed all his life, one by one. Imagine watching him pain at the realization that he must become more and more dependent on the people around him. This is the reality of Parkinson's Disease, and I have watched my dad decline into a Stage 4 Diagnosis. Parkinson's Disease does not kill; it disables the patient to the point of total dependency. When my father was first diagnosed, I didn't fully understand. His doctor prescribed medication to increase the dopamine his brain failed to supply, but he continued his career with full force for years.

I only understood the severity of Parkinson's when he was no longer able to work, and soon after leaving his job, when he was no longer able to drive. From brain surgery to physical therapy to adverse side effects of medications, the experience with my father's diagnosis and progression of Parkinson's Disease has taught me empathy, maturity, and, possibly one of life's most useful qualities, the ability to cope.

Throughout the past few years, I have learned compassion and empathy by providing assistance to my father as he lost physical ability. The loss of muscle mass due to Parkinson's combined with the blood pressure issues from his medications causes my father to sometimes lose the ability to walk. After he eats dinner, my sister, my mother, and I often need to combine our efforts to help him to bed. I have developed patience over time by reminding myself not to be intolerant when he gets into a certain physical state. Although, it is frustrating to see him walking and moving well at one point in the day, yet become immobilized in a chair not even half an hour later.

The only thing that keeps me from stressing over the situation is the empathy I have acquired. Empathy is defined as ‘the intelligent identification with the feelings, thoughts, or attitudes of another.' But empathy is so much more; it is an ineffable bond of understanding. Empathy provides a sense of moral responsibility. It is the ability to put aside my own thoughts and feelings for one moment in the day in order to attempt to understand those of another human being. This understanding enables me to help other people and cope with my situation at home.

With compassion and empathy, I am better able to understand my father and his challenges, as well as my mother, who is my father's primary caregiver. My understanding, respect, and love for my mother has made me more independent and responsible.

Through taking care of more of my own things, I have developed a maturity which continues to help me with both my family and school life. I seldom forget about homework or leave projects to the last minute. By not procrastinating, I have time to put effort into each assignment and turn in good quality work without any extra stress. In our family, my sister and I do as much as we can to assist, but all the responsibilities fall on my mother's shoulders.

Whereas the work in most households is split between two parents, my mother does it all by herself with the added pressure of taking care of my father. Paying the bills, taking care of health insurance, scheduling doctor's appointments, buying groceries, cleaning, cooking, investing money, and supporting her children are just the beginning of my mother's monumental amount of tasks. Empathy and understanding for my mother has led me to mature and take on more of my own responsibilities in an attempt to lighten her load. As a result, the maturity that comes with becoming more independent has taught me how to cope with my problems.

The entire essay, which was rightly awarded an A+, can be read at This young teen, age 13 years, is mature beyond her years and deserves recognition and support for the role she is playing within her family and beyond. Fortunately, her older sister, a member of the AACY team, is working to raise awareness across the US about this otherwise silent population of special children, our nation's Hidden Heroes. They care for people of all ages and all types of conditions, often assisting more than one person at a time.

Not all caregiving youth are fortunate to have the resources and support offered within Azarra's family unit. In her family there are three people—Azarra, her older sister and her mom—who pull together to care for her dad, while her older sister and her mom also continue providing for Azarra, who has just entered her teen years.

Imagine the transformation possible in our nation if, for caregiving families without resources, persons in healthcare, education and the community came together to care for and support caregivers of all ages as they care for others!

Connie Siskowski, RN, PhD has a broad background in health care and a dedication to diminishing caregiving ramifications for family caregivers of all ages. Her passion led to the establishment of a nonprofit that evolved from supporting homebound adults and caregiving families to become the American Association for Caregiving Youth.

American Assoc. for Caregiving Youth

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