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.