But I’m the Caregiver!


One afternoon, Karen, a Family Specialist with the Caregiving Youth Project, called Joey's mom to facilitate his participation in the upcoming Skills Building Group at school. When Karen began explaining this special program that provides free services to caregiving youth in school, out of school and at home, Joey's mom protested, "But I'm the caregiver!"

Joey had shared with Ms. Karen some of the things he routinely does to help his grandmother, who has diabetes and experienced a debilitating stroke. As Karen discussed these with the mom, she suddenly realized that in fact Joey did help out a lot with his grandmother's care. Joey regularly checked his grandmother's blood glucose, gave her insulin and other medications, fed, transferred and even cooked for her when his mom was not home. Often, he would also keep her company during the day, watching her favorite TV shows with her.

Joey's mom is not unusual.

Whether the caregiving situation is sudden—such as when a family member has a stroke—or more gradual—such as when the person's condition worsens as time goes by, due to conditions like Alzheimer's and ALS—the caring is often shared by multiple family members.

Yet, when research is done, or when the government and insurance companies quantify the "work" and the value of caregiving, it is often from the perspective of the "primary" caregiver. Little or no consideration is given to the other family members who also spend their time, resources and energy on caregiving responsibilities.

Many, many times these other family members are children, ages 18 years and under.

It is often said that "many hands lighten the load." This sentiment is especially true, and very much needed, in caregiving.

As a society and a country that is looking at opportunities for revamping and improving its system of care, it is now time for all the hands to be counted. When they are, we can then obtain a truer picture of the vast and valuable role of family caregivers who offer otherwise invisible shared care within the long-term care health delivery system continuum.

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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Unless it was summer break, "Joey" couldn't care for his grandmother during the day while his mother was out. After school hours would be filled with homework, sports and all the things that kids are supposed to be involved in. I wouldn't feel right about giving the responsibility of medications, handling and injecting a needle filled with insulin to a child. Transferring a person can be tricky. What if "Joey's" grandmother fell and broke her hip during the transfer? If she choked on food while he was feeding her? If she had a heart attack and died in front of him, with no one else around? Why put that responsibility on a child? I sure wouldn't.
I was fortunate to have my sister to help in caring for our father, in his home. That is where he wanted to live and die. It was one of the hardest yet rewarding things I've done in my life. Our siblings helped out a few times in the beginning then walked away. I don't know what I would have done without my sister. To those (and I know there are many ) caring for a loved one on your own, I admire and applauded you!
other family members, what's that?
Karen probably has several siblings who do squat for their Mom and let their underage nephew pull the weight for them!