By trade, I’m a computer software developer and a husband, father and son. Outside of my family, my job was my purpose. I was the breadwinner and worked with some of the largest box-store companies to develop better technology workflows.
But in 2014, I began to notice something was off. I could no longer remember the conversation I just had. My memory loss wasn’t the only decline. At this point, I started my journey to find out what was happening.
I also started thinking about retiring because I could no longer intellectually do my job. The company I worked for was great and tried to find me a different role, but even the simplest of tasks became a struggle. I was worried I’d make a mistake, so my wife Kim and I decided it would be best for me to retire and focus on seeking a diagnosis.
After 15 months, I was diagnosed with Alzheimer’s disease. Throughout my journey of searching for an answer, Alzheimer’s was never top of mind. The specialists I saw were brilliant, but they weren’t Alzheimer’s specialists. So for those 15 months, my family and I went through a process of elimination to find an accurate diagnosis.
At first, Kim and I cried. Alzheimer’s is a terminal disease. But as soon as my tears dried, I decided I would not withdraw into the shadows. I am going to, if not beat this, journey through it. I will do whatever I can for myself, my family and other people to try to get through this disease as gracefully as I can.
I never thought that at 51, I’d be retired, caring for my father with vascular dementia and be diagnosed with Alzheimer’s myself.
At the start of my health decline, my parents moved in with Kim and me. At the time, my father was progressing in his dementia. After the first year, my father’s health began to decline. But that whole time, even after I was diagnosed with Alzheimer’s, I was helping care for my father, along with my mom. My mom was his primary caregiver, but Kim and I helped when my mom physically couldn’t do it.
I would help in any way I could; sometimes, I would sit and talk. We’d play with Lincoln Logs or do a puzzle, anything to keep his mind going. But alas, the disease continued to progress.
As his dementia worsened, I felt like I was looking into a mirror. I would think to myself, This is me in a few years. In his final years, many good memories were made, but not all moments were good. I often would come back to my side of the house after caring for my dad, and I felt like I had stopped breathing. I was just trying to hold on.
At this point in my journey, I was in a clinical trial and went to a memory care center.
I’ve tried to continue to see the positives. I was able to get into a clinical trial and participate in something that could save my life or, in the future, save my kids’ lives.
The whole time during the trial, I’ve had ups and downs, but it’s been very positive for the most part. I’ve learned a lot, learned more about the brain than I ever thought I would. Sometimes it’s hard, and it takes courage. But it’s OK because I know this is the one chance I have to extend my life.
Outside the clinical trial, I keep active. One of the ways that I stay active is by working in the yard. I love taking care of the lawn. I love working outside. I love planting.
One of the other things I do is try to keep learning, especially working with new electronics. I like working with microcontrollers or learning new programming languages. I’m always picking up new things to help and test me. If I can still do those things, it makes me hopeful that the treatment’s working. In a humble way, I have proof that I can still do those things.
Recently, I accomplished one of my bucket list items: seeing my daughter get married. She moved her wedding up a whole year during the height of COVID so that I could be there and be cognizant. I was worried that I wouldn’t be able to express my emotions because that’s another symptom of Alzheimer’s. But I was so wrong when I saw my daughter in her wedding dress. I lost it. It was a fantastic day, and I was able to be fully there and present.
As I continue living with Alzheimer’s, one of the biggest reasons I can stay positive is my dad’s experience. I learned to reflect on my own life. It’s not where you’re going but where you’ve been. I look back on my life, and I see my family, the people I’ve met and the ones in my life today. It’s made me not fear anything ahead, but I must ensure I always have the courage to continue.
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