Jun 142014
 

father's day blog 2Father’s Day – or any day, for that matter – is not a typical day for Jason.

Jason is a teenage caregiver.

While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13.

There were signs in the years before Jason’s father was diagnosed. In the 6th grade, Jason was in his school classroom viewing a video about Alzheimer’s with his fellow students. Jason immediately recognized the signs of Alzheimer’s shown in the video as behaviors his father had been displaying at home. He breached the topic with his mother Rita. Then, other issues began to surface. Mike’s boss noticed he had been experiencing trouble with his memory, especially in the afternoon hours after lunch. Soon Mike was seeing doctors to figure out what was going on.

Two years and many tests later, the truth was revealed.

Mike received a diagnosis of Alzheimer’s, and it changed the course of Jason’s life.

At 15, Jason became his father’s primary caregiver. Jason chose to step up to the plate, taking on the task of determining his father’s daily needs. With his mother working full-time more than 30 miles from their home, it became Jason’s responsibility to watch over his father. “It’s an everyday struggle,” Jason says. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”

As with all Alzheimer’s patients, scary situations arise and the reality of the situation is often raw and emotional. Jason manages to keep afloat while growing up a lot faster than 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 has attended a ranch camp twice since his father was diagnosed. This is where he made new connections, supportive friends and where he met his girlfriend, whose father recently passed away with frontotemporal dementia.

Inspired by his father’s strength, Jason become an Alzheimer’s advocate. He has traveled to D.C. alongside his father to ask representatives to make Alzheimer’s a national priority and encourages other young adults to become involved in the fight. He’s learned to “make every single day count.”

Advocating is a passion that requires compassion, much like Jason’s caregiver role. “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.”

Although Jason feels a strong moral obligation to remain in Indiana to support his dad, he recently enlisted to join the Navy. That isn’t to say that he doesn’t worry about his decision. He does. He worries about the “what ifs.” What might happen when he returns? What if his father doesn’t recognize him?

Like Jason, many caregivers and family members of people diagnosed with Alzheimer’s experiefathers day blog 1nce feelings of guilt. But Jason’s family is encouraging him in his decision and is committed to him pursuing his passions. His father insists that he won’t “weigh Jason down” by insisting that he stay in Indiana. Until Jason leaves for the Navy, he continues to live every day as it comes, taking to heart the many life lessons he is learning from his father — particularly his attitude toward Alzheimer’s. “He decided to step up and fight this disease. He advocates for progress and change and shares his voice on Capitol Hill. I respect my dad so much because of that,” Jason said.

Jason’s work as an advocate is a calling that he plans to continue to pursue beyond his years as a teenage caregiver, because he knows the difference he can make. “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 sharing 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.

Learn More:

Become an Advocate
Take Action: Tell Elected Officials to Invest in Alzheimer’s Research
Alzheimer’s & Brain Awareness Month

  11 Responses to “Go Big or Go Home: Advocating for Dad”

  1. Please share info regarding the "ranch camp" and other aids and resources for "caregiver children".

  2. I worry cause there is so much money to he profited by illness…..meds and treatment….IS THERE EVER GOING TO BE A CURE…ALTS.CURE FUND ARE PRETTY INCREDIBLE PROFESSIONALS……BUT ITS SLOW IN COMING.AND FOR THOSE WHO ARE NOT TOUCHED BY IT YET! THEY HAVE NO IDEA HOW DESTRUCTIBLE AN EPIDEMIC IT IS!

  3. My Dad is in the beginning stages of dementia. We need help for elderly people. It is sad watching the confusion. The memory pills he takes do not help much.

  4. I must admit that I had never heard of Alzheimer's affecting so young a person. The "younger onset" is new to me. Thank you for sharing your story – most helpful in spreading the message!

  5. Thank you Jason! My mom is one of those who can no longer fight for herself! Several years ago I became her advocate. May God bless you for your commitment to your dad and to your country!

  6. Good work Jason, you are fighting the fight that we all appreciate. Mike take good care!

  7. Good work Jason, you are fighting the fight that we all appreciate. Mike take good care!

  8. Jason you are an awesone son my mother has been diagnosed with alzheimers going on 4 years I applaud you for stepping up to the plate rendering your father unconditional love your parents did a wonderful job raising you to be a responsibile young adult. I don’t know if you are a believer or not but I am and I tell you

    For me wirhout Jesus Christ I wouldn’t make it plus my mother is a fighter she is now 76 going on 77 this Octobe, I do know eating the right food, fresh air, and some type of exercise help. Looking at old pictures, lustening to music softly, large simply print puzzle book, small conversations, and lits of patiences

  9. What a phenomenal young man! Keep up the great work Jason! My mother was diagnosed with frontal lobe dementia at 55. My teenage son and I have been caring for her since 2009. I see the toll it takes on a young person and the sacrifices they make to care for their loved one. It is truly a sacrifice but I know you will never regret it.

    My best to you and your family!

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