I’m Aware That I’m Rare: Connie Siskowski, RN, PhD (296)

phaware global association®
8 min readDec 1, 2019

The phaware® interview

Connie Siskowski, RN, PhD from American Association of Caregiving Youth discusses youth caregivers who sacrifice their education, health, well-being and childhood to provide care for ill or disabled family members.

My name is Dr. Connie Siskowski. I am the president and founder of the American Association of Caregiving Youth.

I was one of those kids who cared for my grandfather between the ages of about 11 and 13 and never realized how much it impacted my life as an adult. My background is in health care through a broad spectrum; everything from teaching paramedics to hospice care. It was back in 1998, when I attended the first International Conference on Family Caregiving in London that I learned about the topic of quote unquote “young carers” and how much they aren’t being recognized and supported. So all my life, different seeds were planted and ultimately I remarried and my husband encouraged me to go back to school to get my doctorate.

I did so to have a voice for all family caregivers, never expecting to discover the extent of this population in our country, much less in our County. The national study which estimated that there are at least 1.3 million children, ages eight to 18 and this role was released in 2005. Our data here in Palm Beach County started in middle school, so the children that we work with are from ages about 11 on to their high school graduation. So that could be 18 or it could be a little older, depending on when they started in school. Every family is different. Every child’s circumstance is different. Sometimes the roles are assigned. Other times, the kids step up to the plate.

For example, one of our families, the parents and son moved in with the grandma who had dementia. Dad worked and mom was home. And the student’s bedroom was right next to his grandmother. So he and his grandmother developed a close relationship and he was always there for her when his mom was not available. Ultimately, his grandmother relied…

phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global

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