4 years ago our young family received the most devastating news any family could receive. After 2 years of frustrating doctor appointments, tests, and misdiagnosis the answer we were given was not one that we expected: At the age of 30, my husband Ken was diagnosed with Early Onset Alzheimer’s Disease.
Life would forever change for our young family. Our 3 children at the time were 10, 5, and 4 and of course were too young to understand what was going on. Ken was a steel worker and had to leave his job, we lost our great health insurance, and the primary income for our family. Luckily, the new compassionate law for Social Security had just passed and we were able to receive SSDI within the 6 month time frame.
After a year of still working, I decided to put my career on hold and become the full time caregiver for Ken. Becoming a caregiver to a spouse puts a whole new responsibility on any person. You no longer seem to be partners, the intimacy changes, the relationship changes, and watching your soul mate deteriorate before your eyes is one of the hardest things one can endure.
Alzheimer’s disease did not only affect Ken, this is a family disease. Our kids miss him at sporting events, birthday parties, school events, and even a few holidays and been spent without dad. We don’t travel very often, and me leaving to even get groceries is traumatic for Ken. He has wandered off a few times, and had to have the cops help us find him. This disease does not only affect our life today, it will forever affect the future. The saddest part of the disease is that Ken will miss the big life events of our children; Sweet 16’s, graduation, college, weddings, and grandchildren. I will miss growing old with my best friend and sharing all of these accomplishments in life. Everything in our life revolves around this disease.
I have committed myself to being a strong Advocate for Alzheimer’s disease. I work closely with our local chapter, wrote a book for children whose lives have been affected by this disease, spoke in front of legislation in our state capitol, as well as in Washington DC. Fundraisers such as the Hilarity for Charity are such a great event and a way to get the message out to a younger genre. This disease can happen to anyone at any age. As a caregiver, I will continue to speak to anyone who will listen to me and hear my VOICE!
