The American Association of Caregiving reported in 2015 that approximately 1.4 million kids between ages 8 and 18 are caregivers in the U.S. In many instances the care recipient (person receiving care) is a parent or grandparent with Alzheimer’s disease (AD) or other types of dementia. For youth, taking care of an adult with a debilitating disease such as AD, can lead to a very unpredictable daily life. Unlike other teenagers, who have relatively more structure in their daily routine, many teenage caregivers experience a roller coaster of emotions and events, never knowing what to expect from day to day.
Jason’s Story
Take the real-life story of Jason Hatke, who was only 15 years of age when he began caring for his dad, Mike, who was diagnosed with early onset Alzheimer’s disease. Mike was just 46-years-old when he was initially diagnosed. Interestingly, Jason’s health education class at school, was the impetus that eventually led to Mike seeking medical attention for his condition.
The Diagnosis
In his 6th Grade health class, Jason was shown a video depicting some of the signs and symptoms of Alzheimer’s disease, several of which he immediately recognized, because his father had exhibited those same symptoms at home. Mike’s symptoms began to worsen (such as memory problems) and Mike’s boss soon took notice. Soon after, Mike sought medical attention that eventually led to his diagnosis of early Alzheimer’s disease, which changed the course of Jason’s life in a big way…forever.
Teenage Caregiving
While most teenagers worry about upcoming school dances, parties, dating, what to wear to school the next day, and other important things, teenagers with a family member with Alzheimer’s disease can most likely relate to an entirely different reality, as in Jason’s story.
With a debilitating neurodegenerative (brain disease that worsens with time) disease such as AD, Mike ended up having to quit his job. Jason’s mom was forced to become the primary bread winner in the family. This meant that no one was home to help care for Mike…except Jason, that is. So, at the early age of 15, Jason became his dad’s primary caregiver, allowing his mother to go to work every day. “It’s an everyday struggle,” Jason said. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”
Teenagers caring for a loved one with a disability such as Alzheimer’s disease, must grow up faster than other kids of the same age. “I feel like I am closer to 35 than 18,” he says. “Support from the Alzheimer’s Association and aid from other caregiver children coping with the disease has offered me a lot of comfort.”
Support for Teenage Caregivers
Supportive services aimed at helping young caregivers, are available, such as The American Association of Caregiving Youth (AACY). http://www.aacy.org/ The mission of AACY is to provide support for young caregivers and their family members by providing community, healthcare and educational resources.
Jason reached out to his community to give and get the help and support he needed as a teenage caregiver. He attended a camp for teenage caregivers, where he met his current girlfriend, and other friends, who also cared for a family member with dementia. He also got involved as an AD advocate (volunteering to support the efforts of groups working to change laws that help improve funding and research for Alzheimer’s prevention and treatment).
Jason’s involvement in fighting for the cause is fueled by his passion. “It is a blessing and a curse,” he says. “I’ve had to figure out who I am quickly, more quickly than my peers. I see the future more clearly, and I’ve learned the advantages of the family unit and how to not take it for granted. Where other people my age are rebelling and turning against their parents, I have learned how to appreciate mine.”
In the end, Jason did not simply give up on his own goals and aspirations to care for his father full time, he recently signed up as an active enlisted person in the Navy. Jason says that he worries about how his dad will get by without him, and whether he will even remember Jason when he returns home from the Navy. But, with each difficult family situation (such as Alzheimer’s disease) some very hard choices must be made. Mike encouraged Jason to pursue his dreams and says he never wants to weigh Jason down.
The Fight Against Alzheimer’s Disease
“Imagine if my situation was your situation. Imagine how helpless you might feel, and how it would make you feel to lose your memory. My family and I advocate for change on the federal level and in our community to change the future for other families. I fight because my dad fights. I fight for those who can’t. Go big or go home.”
About Jason: Jason is shared his story during Alzheimer’s & Brain Awareness Month in hopes that he can inspire others to get involved with the cause. He currently serves as an Ambassador for the Alzheimer’s Association, recently attending the Alzheimer’s Association Advocacy Forum for the third time. He is also working on launching a dementia website of his own.
