What Happens When Teenagers Become Caregivers


It is not unusual for me to speak to an audience and have someone realize, for the first time, that they were that kid—a caregiving youth. So many people have come up to me or sent me emails recounting their experiences. They always say they wish the support of the Caregiving Youth Project had been around for them.

Sometimes the emails tug at my heartstrings and don't want to leave me. They remind me of all the work ahead…work that can only be done together as awareness is raised and support systems for caregiving youth initiated.

An excerpt from one especially poignant email reads:

I'm 32 now, but I still remember the terrifying years from the time I was 14-20 caring for my mother, who had a stroke and became hemiplegic. I feel like an awful person, but I don't think I'm capable of loving my mom anymore, due to what was robbed of me and my older sister. To this day, I suffer PTSD from the constant screaming and lack of sleep.

In 1997, a stroke robbed me of a pretty amazing mom. A truly wonderful woman who did it all. A single mom who was fun, firm, nurturing, spunky, vivacious and had a killer collection of heels that I enjoyed ambling around the apartment in while she snapped photos with a 35mm camera. A truly beautiful woman in every sense of the word. A woman who bought me and my sister our first gold jewelry.

Nearly overnight mom became a giant tantruming toddler and religious zealot. Now that I'm an adult, I can see how awful becoming permanently disabled was for her. But then, I was very confused and upset and I had just started high school. My sister and I had to toilet her up to five times a night, she had grown quite large so this was a two person effort. For six straight years I had very little sleep. Even parents get a break between children. I fantasized about limiting her liquid intake all the time. My mom told us to never tell anyone at school what we were going through because "social workers would take us away." I'm starting to wish they did. Dressing her in the morning and at night was an hours' ordeal each time. Feeding her was a challenge too. She became incredibly fussy. My life was sapped from me. The screaming. Oh god. The screaming. I still hear it in my nightmares.

I kept fantasizing about my own death to be free. I fell into deep depressions. Now I am a woman with schizoaffective disorder, PTSD, and several other issues. I'm disabled myself. I have vowed to never have children because I would rather die before I put my own child through such a hell.

I hope that reading this pulls at your heartstrings as it continues to pull on mine. When a single parent or grandparent raising grandchildren becomes ill and children must assume adult responsibilities, we must work to identify, prioritize and support these families.

Foster care is not the answer for anyone, especially the children. With advances in technology and tracking, we can create a better system of care and support. It is an investment in family and our future society. Together we can do this! Join with AACY to create system change!

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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Everything that now 32-yo said resonated with me. I started taking care of my mother when I was 12. I also was told to lie at school. The reality is that children put in that position are robbed of their childhoods. If you want to help youth whose parents need care change the system one community at a time. Children should not be primary caregivers because they haven't fully developed into adults themselves. That doesn't mean they can't help out with small tasks like cooking a meal or doing a load of laundry. Those build self-esteem. Keeping secrets and telling lies to protect an adult erode self esteem. I'm not surprised the 32-yo has serious psychological damage from her childhood experiences. She has my sympathy. My mother died before I turned 20. It was both heartbreaking and a huge relief. It took a year of psychiatry to get me functional again. Not everyone has those resources, which is why I firmly believe children should not be primary caregivers.
I completely understand that situation.
I'm 19 years old, I'm from Guatemala and my mother was diagnosed with Kidney failure last year, but she was diagnosed with diabetes 18 years ago.
I actually take care of her, in my entire life I have been surrounded by medicine, treatments and all that stuff. We constantly go to the emergency room and it's a daily fight for the life.
It's exhausting as well, because I'm a single child and all the work is upon me. I have to dress her, feed her and all those things plus I have to go work and to the college.
It's very hard because I had to assume the adult work since I was very young.