My Dad, the ever-optimist and leader of our family, was diagnosed with Alzheimer’s Disease in 2001.
Let me tell you about my Dad. My Dad’s smile would light up a room. He was almost always positive and if you asked him how his day was going, he would likely reply “Fantastic, but it’s getting better!” He was very friendly and made people feel at home easily. In fact, he called all of my friends his “other” daughters. He spent most of his adult life either on staff at a church or working with computers and he encouraged people in every role he was in. He enjoyed public speaking and was a member of a local Toastmasters Club that promoted leadership and public speaking. He was a family man and loved my mom well.
What had started as concern when he would forget the rules of one of his favorite games or couldn’t find the right word as he told a story, turned into a full-blown family crisis when things began to happen on a larger scale.
My Dad became unable to function at work and lost his job. My mom noticed some discrepancies in their checking account and came to realize that the man who had budgeted every cent of our family’s income could no longer balance a checkbook. Once, when driving home, my Dad’s car broke down and he became so disoriented that he didn’t know where he was. He walked the streets of South Oklahoma City in 100+ degree heat, stopping to phone my brother’s house where, thankfully, an intuitive baby-sitter alerted us to the situation and we were finally able to find him. We didn’t find the car until four days later.
And so, after a lot of tests, medical history, doctor’s visits, scans, and more doctor’s visits, my Dad was given Early-Onset Alzheimer’s Disease as a diagnosis in November of 2001. The Early-Onset is applied when the Alzheimer’s diagnosis is given before the patient turns 60.
And my heart began to break.
It doesn’t feel right to see your strong Dad become so ill. The Dad I knew began to fade away as his confusion turned to dementia which then led to the loss of his ability to care for himself. Dad continued to live at home with my mom as his caretaker. He attended Adult Day Health Care while my mom continued to work full-time. My mom occasionally had someone else come and sit with him so she could go grocery shopping and tend to errands.
She cared for him until it became too much for her at home, and the week before my wedding in November 2004, he was placed in a nursing home. My wish for my Dad to walk me down the aisle on my wedding day did happen, as my Dad AND my brother both made the walk with me to the front of the church. Dad was a little unsteady and unable to say the words to give me away, but he was there with me, arm in arm, and with a smile on his face, as my family turned me over to my husband.
That was his last trip outside of the nursing home.
My husband and children never knew the always smiling, optimistic, loving Dad I did, who graciously served the Lord and our family, loved music and reading, talked like Donald Duck around kids, and always had a corny joke to tell. They caught a glimpse of it, from time to time, but only a glimpse. My dad passed away in a nursing home, with closest family at his side, in April 2007. He was a warrior to the end.
When I say losing my Dad to Alzheimer’s Disease broke my heart, it’s true…but it’s not. Because, with Alzheimer’s Disease, your heart gets broken again and again as the disease takes yet a different piece of the personality or ability from the person you love.
And all you can do is watch.
But – you learn to ask for help. You learn to count on friends and family, no matter how independent you are. You weep, and you reach out to others who are weeping as well. You learn more about unconditional love than you did before. You learn that a positive attitude really does make a difference when facing adversity and that you’re stronger than you knew. You cherish moments with those you love.
I’m choosing to honor my Dad by participating in the 2016 Walk to End Alzheimer’s in Oklahoma City on September 24. My hope is there will be quick gains in the treatment of Alzheimer’s Disease, including a cure. So if you see me wearing a purple shirt and marching through the streets of Oklahoma City on September 24, ask me how I’m doing. I just might reply, “Fantastic, but I’m getting better.”
*Written in memory of my hero Dad, Donald V. Stephens, IV and in honor of my amazing Mom, Mary Stephens.