More than a million American children help care for a grandparent, parent or sibling with a debilitating condition like Alzheimer’s disease. If you are the daughter or son of a parent with Alzheimer’s, Father’s Day and other holidays can be unpredictable, depending on the stage of the disease your parent is experiencing. This, by no means, indicates that you shouldn’t celebrate. It’s all about finding innovative ways to experience the holidays.
Most teenagers focus on extra-curricular activities and social engagements in the summer, but a teen named Jason is busy caring for his father with early-onset Alzheimer’s. Read more about his experiences with the disease and his Father’s Day tribute to his Dad with Alzheimer’s.
Jason is a teenage caregiver for his father, Mike, who was diagnosed at age 46 with early-onset Alzheimer’s disease. At the time of his dad’s diagnosis, Jason was just 13 years old.
Jason states that while watching an educational video about Alzheimer’s as part of a health class at school, he began to recognize signs of the disease that his dad had been exhibiting. Soon after Jason’s initial concerns surfaced, Mike went to see the doctor to figure out what was causing his memory loss and other symptoms. It was two years before Mike was formally diagnosed with early-onset Alzheimer’s disease.
With a debilitating disease such as Alzheimer’s, Mike was no longer able to work to support the family, so the responsibility fell on Jason’s mother. At age 15, Jason began to function as his dad’s primary caregiver while his mom worked full time at a job located over 30 miles from the family home. According to Jason, “It’s an everyday struggle, there are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.” In handling the day to day issues that come up when caring full-time for a person with Alzheimer’s, Jason had to grow up faster than most of his peers.
“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.”
Jason attended a camp for teenage caregivers, where he met his current girlfriend and many other supportive friends who were also dealing with family members with the disease. He also got involved as an Alzheimer’s advocate, supporting endeavors that help promote laws to improve funding and research for Alzheimer’s treatment. Jason’s level of involvement in fighting for the cause requires strength, but it 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.”
It’s important to note that Jason did not completely give up his own long-term goals in life to care for his dad with Alzheimer’s. He recently joined the Navy; he worries that he may return home and his father may not recognize him. Regardless of the outcome, the time comes when each person affected by a family member with the disease, must make some hard choices. Jason’s dad with Alzheimer’s made it clear that he didn’t want to “weigh Jason down,” and insisted that his son go after his dreams.
Like Jason, teenagers can do many things to get involved when a parent has Alzheimer’s disease, including:
Jason considers his passion for volunteering a personal calling because he feels he can make a difference. “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 of my dad’s fight. I fight for those who can’t. Go big or go home.”
Do you have a Dad with Alzheimer’s? How are you planning on celebrating Father’s Day this year? We’d like to hear your plans and stories in the comments below.
Get the latest tips, news, and advice on preventing Alzheimer’s, treatment, stages and resources.
6330 Sprint Parkway, Suite 450
Overland Park, KS 66211(866) 567-4049