The Beginning: Eye Troubles

Where did this all begin? It’s a question I’ve asked myself countless times when people inquire about how long Bill has been battling dementia. To be honest, I can’t pinpoint an exact starting point. Looking back now, I suspect it began much earlier than I realized. Many odd behaviors that I chalked up to his vision problems could have been early signs of dementia.

In 2008, his vision troubles began. One day his vision was fine; the next day, he said he couldn’t see out of his left eye. His eye doctor couldn’t explain what happened; thus began the seemingly endless medical visits we made to specialists all over the country.

Less than a year later, the other eye became affected. Now he had central vision loss in both eyes. Each specialist we saw began with a diagnosis of Macular Degeneration, but after extensive testing, they all agreed it was not. What it was, however, they could not diagnose. 

In 2011, I made Bill an appointment at Johns Hopkins in Baltimore, Maryland, to see one of the top eye specialists in the world. He interviewed us and told us to come back in a month. We flew out several more times over the next two years for extensive testing and treatment for Macular Degeneration. But, again, we were given no conclusive diagnosis other than it was definitely not Macular.

Finally, the eye specialist told us to accept that Bill was legally blind and adopt to his new reality. So, that was what we did. The next few years were filled with visits to the VA low vision specialists in Tulsa. They did an excellent job and even sent him to Tucson, Arizona, for specialized training. There, Bill learned how to use a cane, how to cross a street, and how to use the many devices he was given to navigate his new, dark world. 

Bill and Oreo- 2017

During these years, we joined a local support group for the visually impaired, Bill continued his involvement in ham radio, and he volunteered at the Broken Arrow police. He could no longer drive because of his visual impairment, so I had to drive him everywhere he wanted to go. But, at least he was getting out.

Looking back now, I recognize the subtle signs of dementia emerging as early as 2013. Bill, who was once a master of electronics, began struggling with his tv remote, iPhone, computer, and ham radio. He began misplacing his things and showing signs of hoarding. Over time, he became impatient and self-absorbed, sometimes exhibiting behaviors more akin to a child than the capable adult I had known. I assumed this was because he couldn't see very well.

Meanwhile, I was becoming frustrated, angry, and resentful. I couldn’t understand why he couldn’t do the things I asked him to do around the house. Why couldn’t he remember what I told him ten minutes ago? I felt smothered because he wouldn’t let me out of his sight, and I was exhausted from being a caregiver.  

It wasn’t until almost a decade later that we learned the truth. I often wish I had known sooner; perhaps I would have been kinder and more understanding. But when I'm honest with myself, I have to admit that that is not true. Even after knowing he had dementia, there were many times when I was not kind and understanding. The fact is, dementia reshaped our lives in ways we never imagined. It's a horrible disease and it's difficult for both of us. But we are facing it together, one day at a time.