By Linda Chernek Moore, as told to Keri Wiginton
Whether you live with someone or not, the role of caregiver can be all-consuming. But like they say before takeoff: Put your oxygen mask on first. In other words, you can’t care for others if you don’t care for yourself.
I also caution people about being helicopter caregivers. Instead, if your loved one has vision loss, help them find solutions to be as independent as they want.
I wish I’d known more about how to help my father after he was diagnosed with geographic atrophy (GA). That led me to start Our Macular Degeneration Journey on Facebook a few years after he died. My goal then and now is to help caregivers and folks with any form of age-related macular degeneration (AMD) find information and support.
If your caregiver experience is anything like mine, you may not learn everything you need to know at the doctor’s office.
Let Me Tell You About My Dad
I’m 70 now and cared for my father before he passed away in 2012. I’m not sure exactly when he was diagnosed with GA, though his sight became spotty about 7 years before he died.
He and my mother, who had Alzheimer’s disease, were in their mid-80s. They lived in Pennsylvania, but my husband and I were 700 miles away in Georgia. And it was tough trying to manage their care from afar.
It also didn’t help that my dad was not a very open person. We didn’t know he was having vision problems until we saw him wearing dark sunglasses and complaining that he couldn’t see certain things.
GA is an advanced form of dry AMD, and it causes varying degrees of vision loss. Your loved one's experience may differ from my dad's.
In the early stages of his vision loss, he told me he would depend on my mom to tell him what color the traffic lights were. At the time, we didn’t think it was a big deal that he couldn’t identify the red, yellow, and green lights. Of course, now I know that was an early sign of AMD.
I finally got him to his optometrist, though it took a while. And it was hard to get long-distance information from the doctor. My caregiver days started 15 years ago, so we faxed and emailed back and forth. They didn't return our phone calls, at least not regularly.
I had to piece together how to manage his vision loss. And my dad was a very proud person who refused to accept help most of the time.
When you talk to people with AMD, you’ll often hear them say one of their worst fears is a loss of independence, especially with driving. What also comes up a lot, which I heard from my dad, was not to worry: I’m just driving locally, he assured me.
Unfortunately, someone with GA may have one or more blind spots. And, yes, he still had his peripheral vision. But what we can see with our side sight isn’t as detailed as the central vision we use when we look directly at things.
That means if you have GA, and you drive and look straight ahead, sometimes you can’t tell if something off to the side is a mailbox, a bicycle, or a person. The thought of my dad hurting himself, my mom, or someone else scared the daylights out of me.
Now, I urge other people with GA to use caution when driving and to catch a ride with someone else if you know your sight is failing. If you don’t want to depend on friends and family for a lift, there are a lot of local rideshare services and even apps to help get you where you’re going. Ask your eye doctor if it’s still safe for you to drive.
We tried to move closer to my folks but couldn’t manage it.
One of the things I did regularly was talk to my parent’s friends and other family members. I would ask: How are mom and dad doing? And I’d often get more information about my parents that way than from talking to my dad directly.
We also traveled to Pennsylvania as much as we could and would always ask my dad how he managed daily things, including my mom’s medication. That worried me because she had other medical problems, including Alzheimer’s.
My husband is a retired occupational therapist. His specialty was seniors and Alzheimer’s. You can imagine he was a great help to both of my parents.
We went to the drugstore to get him lots of magnifiers. We put them in the bathroom and all over the house. And we created a makeshift system so he could still manage mom’s medication.
But I could kick myself now because my husband and I could have done a better job, we think, in helping my parents if we’d just known about all the low-vision adaptive tools and techniques we could’ve tried.
How Caregivers Can Help Loved Ones With Vision Loss
My dad was slow to accept our support, though he was thankful when we sat with him in person and figured out ways to make his life easier.
But instead of telling you what helped with my dad – since we didn’t know much about low-vision aids at the time -- I think it’s better to go over what I know is available now that I wish I could’ve suggested to him back then.
I definitely would’ve taken him to a low-vision optometrist and a low-vision occupational therapist.
Low vision specialists know to ask things like: What do you want to do and can’t? Do you need to make a grocery list, but you can’t see what you write? Well, here’s paper with lines on it and black markers.
My dad told us he couldn’t see the TV screen clearly. Now I know there are special telescopic glasses to help with issues like that. Also, we would’ve invested in better magnifiers for people with GA. There are so many of them now.
Some people use video magnifiers, or CCTVs, to read the newspaper, mail, a book, or anything printed. You can even use them for grooming or arts and crafts. You can point the video camera at anything you want to see larger and in more detail.
If your loved one isn’t that tech-savvy, take them to a low-vision specialist. A professional will take the time to teach them all about how adaptive devices work and which tools may help them the most.
How to Know What Your Loved One Sees
Caregivers should try to understand how the world looks to someone with GA. Get a newspaper or write down a couple of lines of words and ask your loved one what they see. Do certain letters or words disappear?
You can also get an old-fashioned clock with numbers on it. Ask your loved one with GA to look at the center dot. They may tell you they don’t see the number 2 or the number 6. Some people may not be able to see the center dot.
If possible, go to appointments with your loved one and talk to the doctor about what their tests mean. Remember that some people with GA do well on acuity tests, and some don’t. But how well someone sees an eye chart doesn’t say much about how they see out in the real world.
Ask your loved one to describe how their vision loss affects them. Try to get them to give you specific examples of areas where they may need help.
My Best Advice for Caregivers
You might find it challenging to prioritize your needs. But a healthy diet, exercise, and stress management are critical. And a strong support network is vital for everyone involved. Reach out to friends and family, online groups, or meet others in your community.
Learn the facts about GA. Find out how the condition changes over time. Then look for low vision aids, services, or specialists to help your friend or family member live their best life despite this disease.
I feel like I’m a caregiver of sorts to the people in my Facebook community. And many of the newly diagnosed who come to our group are scared. How do you fight fear? We do it with information.
Photo Credit: SetsukoN / Getty Images
Linda Chernek Moore, age-related macular degeneration advocate, Acworth, GA.