You Don’t Know What You Don’t Know

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Today, March 10th, marks the 54th anniversary of the last day that I had to enjoy with my grandfather here on earth. I was 13 years old, at the time.

In the early morning hours of March 11th, while sleeping in our living room in Nutley, NJ to be closer to my grandfather's bedroom, I awakened a couple of minutes after the 2:00 am medication alarm didn't go off. I then went to the bathroom to get some water to give him his prescription.

Once at his bedside, I touched my no longer breathing "Pop." To this day I can still feel the coolness of his skin.

I awakened my mother and grandmother, and the doctor made his final house call to my grandfather. Soon after, the funeral home came to take Pop's lifeless body away.

I held it together until later that morning, when I called my friend Vicki to let her know I wouldn't be going to school that day.

In 1960, no one understood much about caregiving; the emotional roller coaster ride of its joy from a very special relationship, to the toll it could take and the trauma it could inflict on a child.

There was no intentional harm. It was simply a matter of not knowing.

Today, as caregiving and its effects are becoming almost epidemic, much more is known about the ramifications on children. However, this knowledge remains limited and has yet to extend to either the general public or the professional population.

The clamor over the needs of the tsunami of adult family caregivers often drowns out the attention given to the children who require special support in their adult role as family caregiver, so they can emerge as healthy, educated and productive adults.

This past week, there was a large article about caregiving in the Washington Post.

Sadly, when the same article was released in PDF format, the portion relating to caregiving youth was omitted.

This week, as I travel to the ASA Conference in San Diego and talk about "Caregiving Youth: The Hidden Population in Long Term Care," I will seek to build more bridges within the aging community so that there can be enhanced recognition of this special population of child caregivers.

I will also search for new opportunities for funding to update the national statistics which—a decade ago—showed that there were at least 1.3 million child caregivers in the United States, ages 8-18 years old.

Little by little, the ultimate goal of the American Association of Caregiving Youth will be achieved: no child in the U.S. will have to drop out of school because of a lack of support for their caregiving responsibilities!

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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2 Comments

In a day when most middle school and high school children are thinking about the latest movie or the newest app, there are the hidden population of those children who think about whether their loved one will be ok when they get home from school. The American Association of Caregiving Youth is the only organization of its kind that provides resources and support services to these children and their families. Connie, your grandfather's legacy lives on in the amazing work you do everyday.
This article rings true for so many of our caregiving youth. Thank you Connie for sharing your story and advocating for our caregiving youth.