By Linda Chernek Moore, as told to Keri Wiginton
Whether you live with someone or not, the role of caregiver can be exhausting. But as they say before takeoff: first put on your oxygen mask. In other words, you can’t take care of others if you don’t take care of yourself.
I also caution people against being helicopter caregivers. Instead, if your loved one is experiencing vision loss, help them find solutions to be as independent as they want to be.
I wish I knew more about how to help my father after he was diagnosed with geographic atrophy (GA). This led me to start Our Macular Degeneration Journey on Facebook a few years after his death. My goal then and now is to help caregivers and people with any form of age-related macular degeneration (AMD) find information and support.
If your caregiving 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 father
I’m 70 now and cared for my father before he passed away in 2012. I’m not sure when he was diagnosed with GA, although his vision became spotty about 7 years before he died.
He and my mother, who had Alzheimer’s disease, were in their 80s. They lived in Pennsylvania, but my husband and I were 700 miles away in Georgia. And it was difficult to manage their care remotely.
It also didn’t help that my father wasn’t a very open person. We didn’t know he had vision problems until we saw him wearing dark sunglasses and complaining about not being able to see certain things.
GA is an advanced form of dry AMD and causes varying degrees of vision loss. Your loved one’s experience may differ from my father’s.
Early in his vision loss, he told me he would rely on my mother 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, I now know that it was an early sign of AMD.
I finally took him to his optometrist, although it took a while. And it was difficult to get information remotely from the doctor. My days as a family caregiver started 15 years ago, so we sent faxes and emails back and forth. They did not answer our calls, at least not regularly.
I had to figure out how to deal with his vision loss. And my father was a very proud person who refused to accept help most of the time.
When you talk to people with AMD, you often hear them say that one of their biggest fears is loss of independence, especially when it comes to driving. What comes up a lot, what my dad told me, is not to worry: I just drive locally, he assured me.
Unfortunately, a person 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 view isn’t as detailed as the central vision we use when we look directly at things.
This means that if you have GA, and you’re driving and looking straight ahead, you sometimes can’t tell if something to the side is a mailbox, a bike, or a person. The thought of my father harming himself, my mother, or anyone else scared me.
Now, I urge other people with GA to use caution when driving and take a ride with someone else if you know your eyesight is failing. If you don’t want to depend on friends and family for transportation, there are plenty of local rideshare services and even apps to help you get where you’re going. Ask your eye doctor if you can still drive safely.
We tried to get closer to my parents, but we couldn’t.
One of the things I did regularly was talk to my parents’ friends and other family members. I would ask: how are mom and dad? And I often got more information about my parents that way than by talking to my father directly.
We also traveled to Pennsylvania as much as we could and would always ask my father how he handled everyday things, including my mother’s medications. This worried me because she had other medical problems, including Alzheimer’s disease.
My husband is a retired occupational therapist. His specialty was elderly people and Alzheimer’s disease. You can imagine it was a great help to both my parents.
We went to the pharmacy to get him lots of magnifying glasses. We put them in the bathroom and all over the house. And we created a makeshift system so he could still manage Mom’s medications.
But I might blame myself now because my husband and I could have done a better job, we think, of helping my parents if we had simply known all the tools and techniques for coping with low vision that we could have to try.
How Caregivers Can Help Their Loved Ones With Vision Loss
My father was slow to accept our support, although he was grateful when we sat down with him in person and found ways to make his life easier.
But instead of telling you what helped my dad – since we didn’t know much about low vision aids back then – I think it’s best to go over what I know is available now and which I wish I could suggest. him at the time.
I definitely would have taken him to a visually impaired optometrist and occupational therapist.
Low vision specialists know how to ask questions like: What do you want to do and what can’t you do? Do you need to make a shopping list, but you can’t see what you’re writing? Well, here’s some paper with lines on it and black markers.
My father told us that he couldn’t see the TV screen clearly. Now I know that there are special telescopic glasses to solve such problems. Additionally, we would have invested in better magnifying glasses for people with GA. There are so many now.
Some people use video magnifiers, or CCTV, to read the newspaper, mail, book or other printed material. You can even use them for grooming or arts and crafts. You can point the video camera at anything you want to see bigger and more detailed.
If your loved one isn’t very tech savvy, take them to a low vision specialist. A professional will take the time to explain to them how adaptive devices work and which tools can help them the most.
How to know what your loved one sees
Caregivers should try to understand what the world is like for someone with GA. Get a journal or write a few lines and ask your loved one what they see. Do certain letters or words disappear?
You can also get an old-fashioned clock with numbers. Ask your loved one with GA to look at the center point. They may tell you that they don’t see the number 2 or the number 6. Some people may not see the center point.
If possible, attend appointments with your loved one and talk to the doctor about what their tests mean. Remember that some people with GA perform well on acuity tests, and others do not. But how a person sees an eye chart doesn’t say much about how they see the real world.
Ask your loved one to describe how their vision loss affects them. Try asking them to give you specific examples of areas they might need help with.
My best tips for caregivers
You might have trouble prioritizing your needs. But healthy eating, exercise and stress management are essential. 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 seek out low vision aids, services or specialists to help your friend or family member live their best life despite this condition.
I feel like I’m somewhat of a caregiver to the members of my Facebook community. And a lot of newly diagnosed people who come to our group are afraid. How to combat fear? We do it with information.