By Jennifer Kathleen Gibbons, as told to Kara Mayer Robinson
My father, Richard, had wet age-related macular degeneration (AMD). As his caregiver, I saw him struggle with vision loss more and more over time.
It was incredibly hard for him, especially since he loved to read. While it might have been nice if he just woke up one day and accepted that his vision would never be the way it was before, that’s not what happened.
His AMD Diagnosis
My dad was diagnosed with AMD just after he turned 64. He woke up one morning and couldn’t see anything. He went to an emergency eye doctor, who said it was macular degeneration.
I learned later that he’d had blurry vision a couple of months before that, so it’s hard to pinpoint exactly when it started.
He was living in an apartment in San Francisco at the time. He eventually moved into an assisted living facility for veterans, where he stayed for the last several years of his life, until he died at age 89.
Learning to Accept Help
My dad never got to the point of complete vision loss, which I’m grateful for. But living with AMD wasn’t easy.
When he was diagnosed, I think he was angry. Absolutely angry. In the beginning, he didn’t know what to do. I told him he should get a cane. He refused. Only when he had atrophy in his feet did he start using a cane.
Over time, my dad learned how to accept help.
Thanks to the local VA, we learned about a store called Adaptations. It had tools that helped with vision loss, like magnifiers and a talking timer. We did a lot of mobility training. If he was going somewhere new, we went there beforehand and took note of bus stops, for example.
My dad had stopped driving years earlier because he lived in the city and didn’t need a car, so driving wasn’t an issue. But cooking, which was intuitive for him, was trickier. During his last years, he started to buy prepared meals from grocery stores. He lived near Chinatown, so he’d also go to a restaurant there and ask what the special was, then eat that.
My dad loved to read. Losing that was what upset him the most. When he told me how much he missed reading, I said, “OK, we’re going to the library and getting you a library card so you can get audiobooks.”
I showed him that the Library for the Blind has more resources, like audio versions of the nonfiction books he was most interested in. I helped him fill out the application and in minutes, he had access to audiobooks, movies with descriptions, and more.
My dad borrowed books on a regular basis. I’ll never forget when he looked at me and said, “You’re good at this.” In some way, I think he was starting the acceptance process. After he died and I was cleaning out his room, I found a box of audiobooks from the Library of the Blind, many of which were books I recommended.
There Was Only So Much I Could Do
It was hard for my dad and he didn’t always handle his frustration well.
Sometimes he’d go to a bookstore and ask if they had a certain audiobook, but it wasn’t available. I tried to convince him to get an iPhone and use apps like Audible, Chirp, and Overdrive, where you can borrow and listen to audiobooks. But he refused.
He did have a special computer that talked to him, but he didn’t use it very much. I think it was because he was part of the Mad Men generation, where computers meant people could be replaced.
There was only so much I could do, and I often had to let go with love.
Loving Him Was Enough
There wasn’t a moment when my dad just accepted his AMD. I don’t think there was ever a time when he thought, “OK, this is it, I’ll be like this for the rest of my life,” and accepted it.
A part of him hoped it could get better somehow. In the last years of his life, he wanted cataract surgery to improve his sight, but his doctors wouldn’t do it because of his age.
I think he hoped that with that surgery, his vision could be improved somehow. He didn’t expect miracles, but he held onto that hope. I never wanted to be the hope dasher, but I also knew that I shouldn’t really encourage him to pursue the surgery. All I could do was love him. And I think that was enough.
What I Learned as a Caregiver
Living through this with my dad made us closer and taught me a lot about vision loss.
I know AMD can be inherited, so I get my eyes checked on a regular basis. I’m also trying to stay healthy. I’m working on getting my cholesterol down, I do yoga, and I’m trying to practice mindfulness to keep my blood pressure down.
My advice for family members is that it’s important to take care of yourself, too. It’s also helpful to reach out to your local independent living center. They can take you step by step through what to do next.
Help your family member build up as many independent life skills as possible. It’s OK to ask if they want help, but don’t just assume they can’t do something. If they’re really stuck, they’ll ask for help.
Most of all, I’ve learned that it’s best to try, and let go with love.
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