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. 

Life Changes Things

Life changes. Every year that I get older, it seems as if I have a new adjustment to make. Now that I'm working and being Bill's chauffeur, it seems I am having to adjust my writing schedule to accommodate it. For the past two years, I've enjoyed writing for Oklahoma Living Magazine, but, unfortunately, this type of writing requires me to travel and interview people. I don't have the time to do that now that I'm tutoring, except for in the summer. Because of that, I was forced to give up some of the assignments that I had for the upcoming year - a big disappointment.

However, as I sat thinking about it and feeling sorry for myself, I said, "Self, what other kind of writing could you do at home in the middle of the night and in between your other responsibilities?" I realized that I could write on spec about topics that I can research at home - no travel or interviewing. I could also work on my mystery and/or children's books that have been sitting in my files. So, that's what I've decided to do.

First, I sent off some queries for magazine articles I could write at home in the middle of the night. I got four assignments!

Next, I pitched an idea to the kids in my writing class about an extra assignment - writing the novel. If any of them take me up on it, we'll form an online critique group and work on our stories together. We're going to use the book, "Seize the Story: A Handbook for Teens Who Like to Write" by Victoria Hanley. We'll work through this chapter by chapter throughout the school year. We'll critique each other and I'll help them learn about the publishing business (as much as I know) and maybe even take them to some writer's workshops.

So, the bottom line is this:

“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” -Maria Robinson

Tulsa Council of the Blind

Logo of person with white cane.

As many of you know, my husband Bill is legally blind. He began losing his vision in 2006 after a visit to get contacts. We visited eye specialists from here to the East coast in search of answer to why he was losing his vision, but no one seems to know. The specialists at Johns Hopkins in Baltimore, MD, finally decided it was probably genetic or an autoimmune disease. He said this is the standard answer when they can't figure it out.

We were both hoping the vision loss was temporary; but, after consultation with doctors from Dean McGee, John Hopkins and Mayo Clinic, we finally had to accept the fact that, barring a miracle from God, he would probably not regain his sight.

In the meantime, we were both struggling to adapt to these changes. Bill was struggling with his lost of independence. No more could he get in the car and go somewhere. He has to depend on me to drive him. I was struggling with a change of roles. Bill had always been the one who went out to work. He loves being with people and want to go, go, go. In contrast, I enjoy working at home alone and only like to go out on special occasions. It was the perfect marriage. He enjoyed going out and I enjoyed staying home. We were both happy. But now, our roles had reversed. How would I be able to take care of all the things that Bill used to take care of? How would Bill be able to adjust to staying home and being dependent on others? This was a scary time for both of us and we didn't know where to turn for help. The doctors only worked on a diagnosis; they gave no advice on where to get emotional support.

In desperation, I began searching the Internet for blind support groups and only found one: National Federation of the Blind. We went to a meeting and quickly wished we hadn't gone. The leader of the group told us in no uncertain terms that if we came there because "Oh, I'm a poor little blind person and I need help, you've come to the wrong place." Both of us wanted to slide under the table and disappear. We stayed for the meeting, but were so glad to go home. That was definitely not the help we were looking for. We went home and prayed for help from somewhere else.

Finally, after searching the Internet some more, I ran across a small posting from a person who ran a support group in Tulsa called the Tulsa Council of the Blind. We went to the meeting and found just what we were looking for. They were helpful, supportive and caring. They told us where to go for more help and who to contact. This was the breakthrough we had been looking for. From there, Bill has been able to get help from the VA, the Oklahoma Department of Rehabilitation, and more. Emotionally, we have both learned to adapt and are making progress in getting back to a new normal.

I said all that to say this: I have just finished creating a website for Tulsa Council of the Blind. My goal is that this website will not only make easier for someone to find this organization, but that it also will help others get the help they need when going through a transition such as ours.

With the help of the staff, I have including information about the organization and its services, as well as links to other websites with helpful information for both the visually impaired as well as for the family and friends of the visually impaired. While on the site, you'll learn interesting facts about the blind, gain knowledge about the causes of blindness, discover resources for helping the blind gain confidence and independence, and even find educational resources for parents of school-age children who are blind or visually impaired.

If you know anyone who is losing their vision, please send them to the Tulsa Council of the Blind website.  And if you have a website or blog or Facebook page, please link to the website so that others can find it. Don't let them go through this alone!

UPDATE: Sept 21, 2012. I just received a nice note from the new president of NFB apologizing for the treatment we received at the NFB meeting. It's nice to know that someone cares enough to reach out and make it right.

UPDATE: Oct 20, 2019. I no longer maintain the Tulsa Council of the Blind website.