For About and By Caregivers
Surviving for Those Who Didn’t - Choose

By  Amelia Owen


Curled up under a hospital blanket in the large recliner with her workbook from school, she awakened to the sound of the nurse measuring her mother’s blood pressure and temperature. The glow from the TV and the methodical pumping of the oxygen machine had lulled her to sleep as she worked on her homework. At first, she could not make out the strange environment. Her memory of the situation came back as she rubbed her eyes and focused on the strange, yet familiar face of the night nurse caring for her mother, recognizing the beeps of the heart monitor and the other unknown, nonetheless purposeful machines. The nurse tenderly looked at the little girl, and the girl repaid the nurse’s sympathetic gesture with a yawn and smile to let her know she was ok, all in silence so as to not wake her recovering mother.

The little girl sat up to observe this procedure she had seen numerous nurses perform on a regular basis since her mother’s double radical mastectomy. Each time something was done to her mother, the girl’s curiosity increased. She watched with growing intent every sequence of steps of the nurses’ duties. Paying attention to the responses the nurses gave to each of her mother’s needs and requests, she examined their every action as each task was routinely completed. It was not so much with a critical eye she attended these activities, but a sense of protection with a fascination and determination to learn and help. She began to ask questions about the nurses' job because deep inside her eleven year old psyche dwelt a strong resolution to be a part of the team helping her mother heal. And she did. She started measuring bags with drainage of fluid, taking temperatures, refilling ice pitchers, rinsing unusually shaped bowls, brushing her hair, wetting toothbrushes, getting this and that, fluffing pillows, and drawing blankets. Despite her limitations in knowledge, training, and age, she soon became known as Mom’s Little Nurse. Little Nurse relieved some of the small, tedious burdens her mother's care required, giving her father the ability to work his full-time job and run the family business her mother had taken care of prior to her diagnosis and had to abandon temporarily in order to fight her battle with cancer.
This scene is probably more common than one would expect. For various reasons, more adult patients require care from family members. Usually, one thinks this care would be provided by a spouse, sibling, or friend - an adult . This, more than often, is not the case. According to the National Alliance for Caregiving and the United Hospital Fund, "nationwide, there are approximately 1.3 to 1.4 million child caregivers who are between the ages of 8 and 18.  The outcomes of this responsibility can be severe. The report states that "they are more likely than non-caregivers to have trouble getting along with teachers, to bully or act mean towards others, to be disobedient at school, and to associate with kids who get in trouble." A number of other studies focus on the effects of severe, life-threatening disease diagnoses on the patients' children. 

More specifically, studies of daughters of mothers with breast cancer show the girls have more recurrent signs of depression (Brown, et al., 2007 abstract). They struggle with a number of conflicting emotions as they try dealing with their mothers' prognosis and how their world is changed drastically. A study conducted by Stiffler et al. found that often young girls in this situation initially experience denial and fear, followed by an understanding that "the cancer would affect them, their life goals, and activities." Subjects of the same study reported a feeling of intrusion as cancer entered their lives, and they attempted to pay no attention to it by avoiding the "unpleasantness of home, their mothers' illness, the added responsibilities, and missing out on activities…They felt profound loss related to not being able to rely on their mothers, loss of their mothers' companionship, and loss of their mothers' involvement in their everyday activities."

The idea of adolescents in typical circumstances conjures images of raging hormones, unpredictable emotions, daring risk-taking, and other angsts associated with the preteen and teen years. When his or her mother is diagnosed with a potentially terminal disease, one can anticipate these images to be intensified several times over. But that does not have to be the case. The research by Stiffler et al. mentioned earlier also indicates positive results from the tribulation of having a mother diagnosed and treated for cancer. They learned to search for encouraging results from others who had family members with cancer, and some became active in teaching others how to prevent breast cancer as well as taking better care of themselves in order to avoid a future diagnosis of breast cancer. The daughters often took on the role as caregiver for their mothers, keeping their mothers alive, and therefore, losing the egocentrism of adolescence by considering someone else's needs before their own and appreciating the duties once performed by their mothers.

A considerable amount of empirical data supports the ideology that acceptance and adaptation is key to successfully coping with the devastation associated with a cancer diagnosis, particularly a young daughter in relation to her mother's breast cancer diagnosis. It is extremely important to seek assistance to obtain acceptance and adaptation for this life-changing event if it does not come naturally. One may find support from spiritual leaders, family members, friends, teachers, coaches, therapists and counselors, and support groups. Finding a healthy outlet is vital to deal with the stress—journaling, playing an instrument, exercising, volunteering, or discovering new hobbies can help alleviate the strain of caring for or dealing with the illness a loved one.

Cruelty or neglect did not leave Little Nurse alone at the hospital with her ill mother. Due to financial needs of the family and lack of childcare resources, the mother’s hospital room was the best place for the little girl. And it was there Little Nurse wanted to be, with her mother, taking care of her. I know because I am Little Nurse. I was there for her through numerous reconstructive surgeries, her second battle with metastasized Stage IV cancer, and other surgeries that followed the devastation of the effects of the cancer treatments. Through junior high and high school, I watched her dynamic involvement in the "Look Good...Feel Better" program that helps others heal emotionally by improving self-esteem. The year after I graduated from college, I assisted my mother in establishing the first American Cancer Society Relay for Life in our hometown.  I watched my mother survive several attacks of cancer over and over, inspiring others to continue their battles, growing and exhibiting her faith in God. I learned what it means to be a fighter, to conquer, and to courageously take the blessing of life and use it to help others.

Although it broke my heart to see her in so much pain, I chose to be with her, support her, and encourage her through the toughest times of her life, just as she had done for me. We formed a bond most mothers and daughters never experience. We laughed, cried, yelled, and hugged a lot. Being able to care for my mother during her battles with cancer was the best experience of my life in that it made me the person I am today. By no means was it easy; but it was a choice I made at a very early age and it is one I will never regret.

Because of this privilege, I have a special place in my heart for cancer patients and their caregivers. I am currently working on my master’s degree in counseling, hoping to use my experience and training  to provide psychosocial and emotional support for cancer patients and their caregivers. I am also a licensed massage therapist. I received National Certification for massage therapy so that I may provide therapeutic touch for those dealing with the effects of cancer, and someday work in research on the benefits of massage and psychotherapy for cancer patients and caregivers. 

What seems to be a very tragic and traumatic event at the time can turn into something very positive. I was not damaged by being left alone with my mother in the hospital at a very young age during her recovery. I was not traumatized by observing the severe effects of the life-threatening disease of a loved one. I was not injured by being a witness to the battle of cancer. I was blessed. I had the opportunity to care for her the way she did for me when I needed her most—when I was weak and vulnerable and could not take care of myself. What better way to repay the person who gave me life.

 Subscribe to our weekly e-newsletter