Welcome to our website! We are glad you are here. Sickness and illness may cause families to have to help each other. In your family, you may help your parent, grandparent, brother or sister with things they have trouble doing for themselves, like dressing or feeding. This type of help is called "caregiving" and it is an important job within a family.
Growing up, going to school and making time for friends, homework and sports is the main focus of life for students your age. Caring for someone in your family may be natural and no big deal to you. But, as time goes on, the health situation in your family may grow more difficult and your responsibilities may affect your work at school or cause you to worry or be sad. This website hopes to support you during these times. You are not alone. Call our toll free number for help: 800-725-2512.
A family health situation impacts everyone in the family. You might have many questions about a disease, disability or health situation such as addiction or mental illness that is affecting your family. You will find information on these topics as well as other resources that can help you in your journey as a Caregiving Youth. Remember, YOU are important and we are here for YOU! Thank you for doing the important job of a caregiver within your family. YOU ARE NOT ALONE!!
My life as a young caregiver began at the age of 7 or 8. My father died when I was six and shortly thereafter my mother’s health began to decline. I was one of 4 children, so I was not the only caregiver. I remember the tasks in the beginning were simple things like helping with a leg dressing or helping with medications. As I got older, I took on more responsibility such as being responsible for cooking, cleaning, laundry, and helping my mother with bathing and dressing.
I was a caregiver until the age of 13, when my mother became so disabled that she could no longer manage 3 teenagers and my younger sister. At this time she was wheelchair bound and required assistance with toileting and transfers. I did not think my life was that different from my schoolmates, but it was. My family was split up and we were placed in foster care. I had wonderful foster parents. While I was a caregiver, I was a “C” student. After my caregiving stopped, I became an “A” student and graduated in the top 10% of my class.
Looking back, I see that I experienced depression in the 6th grade, due to my family situation. I did not have friends over to my house, mainly because we lived in a dirty house. I was made fun of by my classmates since I did not have new clothes and my mom was “different”.
However, I am thankful for the experience because I gained more from it than I lost. I learned to be independent, self-reliant, a good cook, caring and persistent. I am a nurse and an advocate for young caregivers because of my caregiving experience.
Mary Hibbert, RN, MS
Connie Siskowski, PhD, RN, MPA
Born on the cusp of the boomers, it was unique to have a dad who would only occasionally visit and to live with grandparents along with my mother and brother. My mom worked and then played cards on Saturdays. I grew up helping with various chores. My grandfather, "Pop" and I shared a special bond. He protected me from the wrath of my grandmother and from the torments of my brother. Each week he gave me my 25 cent allowance and taught me how to garden, mow the lawn, repair a lamp, etc., etc.
When I was about 11 and he was the age of 82 years, Pop finally stopped working part-time. We saw his failing health continue to decline. His feet would swell and I learned how to check on his edema, help him put on his white socks and stretch his shoes to fit. I made and brought him food and helped him eat. I emptied his urinal when trips to the bathroom became more difficult. He was tall and big but I found a way to help him get out of his chair. We would spend time listening to the radio, reading or playing cards. I cut his hair, shaved his beard, and trimmed his moustache. I treasured my time with Pop and felt great joy in helping and caring for him.
The doctor would come to the house and change his medicine. One day he started on a new medicine for his heart that he needed to take around the clock. By now I was 13 and I was the person who was going to wake up at 2 AM to give it to him. That night I slept in the living room so I would be closer to his bedroom in case Pop needed something. Why I was the person doing this, I have no clue…maybe I just wanted to…after all, he was my Pop! The alarm didn’t go off but I woke up at about 2:02 anyhow, and got some water and his pill…I reached his bed only to touch his cool skin…I was too late…he would never hold me in his arms again.
Who knew then about young caregiving? The experience probably led me to learn CPR and First Aid and to become a junior volunteer on our town’s emergency squad in Nutley, NJ…and ultimately to become a nurse. Except when Pop died, I didn’t miss school or neglect my homework…I may have spent less time with friends but that didn’t matter…my Pop was my priority. Today I am thankful to have experienced the shared blessing of caring and being cared for during my formative years. Pop’s love and strength helps me persevere today.
Connie Siskowski, PhD, RN, MPA
It is a relief to me as a middle aged adult, to finally put a name to the experience I lived during childhood. To say my experience as a young caregiver shaped me into the person I am today is an understatement. As an adult, I am only beginning to comprehend the profound impact that young caregiving continues to have on my life today. What I find amazing as I listen to the childhood stories of other adults, is that young caregiving has always been with us and it comes in many shapes and sizes. Yet no matter what the situational circumstances, the feelings and emotions have a common thread of alone-ness and sadness. These stories are told factually and with resigned acceptance of "I did what needed to be done".
Like me, most adults with these stories do not see themselves as 'young caregivers' at first. You are in a family and you have no choice but to survive so you go on auto-pilot to get through whatever situation faces you and your family. An adolescent experiences so many other things in the outside world that whatever is going on at home is not talked about. Yet it weighs on your mind all the time. You know things are different in your house. You think you are the only one in your circumstances. You might be embarrassed to let anyone know that anything was different for you at all. So nothing is said.
Young caregiver situations can be very different in the actual circumstances but the feelings and thoughts and burdens of worry carried are hauntingly similar. As an adolescent, I did not have the verbal skills to express what was accumulating inside of me. Because there was no visible, tangible 'thing' wrong with my family, I was confused on why things were not 'right' so I took on the responsibility of being the cause and spent a lot of energy in being 'really good' so that things would not explode. I walked a tightrope and 'fixed' things so that explosions would not happen. Then, I waited.
Waiting for the next explosion was an unspoken tension among my siblings. There was no real violence and these explosions were not often. Funny, I just wrote that from my childhood perspective as a trained professional adult that is an untrue statement. It is difficult to write about my childhood as a young caregiver because it feels disloyal. I am telling my family secrets that I was told to keep "because it is nobody else's business". I am trusting that if just one other young caregiver knows that they are not alone or 'crazy' because their family situation is different then this will be worth it.
How was I a young caregiver? I was 4 and my brother was 3 when my 2 year old sister took sick one day with meningitis and was dead the next day. Childhood came to an end that day for my brother and me as chronic depression and later alcoholism took a grip on our parents. It was all my mother could do to take care of our 1 year old brother while my father struggled to go to work. I became the caregiver to hold things together for everyone involved. Yes, it taught me valuable life skills. But the cost I have paid has been enormous. If I had someone to talk to or if I could have known that I was not alone, life would have been different. On some days, I gain strength from knowing I made it out alive. On other days, I still feel like a casualty. On those days, I just stand still and count my blessings
Being a Caregiver - Eleanor's Story
I thought it best to share this interesting point with you. During my initial interview with the President and Founder of the agency, Dr. Connie Siskowski, I discovered for the very first time that I had been a pre-teen caregiver to my ailing dad up to the time of his death. I had had to miss classes for up to three days of the week to give my dad his medications and meals, while my mom assumed the heavy workload he had been doing to support the family. I did this task for a considerable period of time up to his death. I remembered that there were times that I would cry wanting to be in school, play with my friends on the playfield after school, and participate in church activities. I also remembered how affected my self-esteem was after test taking. My grades were badly affected, and there was nothing I could have done. Because of my culture "no" wasn't in my vocabulary and to have questioned my mom would be to challenge her. That was a no, no in my time as a child. My presence here now as a BA candidate, and at this stage of my life is a clear indication and by-product of a care giving youth.