Helping a Loved One Who is Visually Impaired
When you're married to a legally blind man, much like Kenny Rogers suggests, you've gotta know when to hold 'em, know when to fold them, know when to walk away, and know when to run. In other words, it's important to learn when to help your spouse out and when to let him or her figure things out on their own.
Visually impaired people (VIPs)
The general public often views visually impaired people (VIPs as my husband likes to say) with pity. As if they are unable to care or do for themselves. When someone you love is losing their vision, it's very easy to want to step in and do things for them. If you could, you'd do EVERYTHING for them. But I've learned that my VIP husband is a super capable guy, and in my marriage, me babying or coddling him doesn't work well for either of us.
My visually impaired husband
My husband, Sam, has Stargardt Disease. It's a form of macular degeneration that often begins in childhood. He was diagnosed at 11 years old and was legally blind before he ever got a driver's license. We didn't meet until we were both in our twenties, so I've only known Sam with vision loss. His vision has deteriorated in the 20 years that we've been together so some things that he could do easily when we first met, are a bit more challenging now, so we've adapted over the years.
Helping a loved one who is visually impaired
Learning how to walk that tight rope between being helpful and being annoying takes a bit of trial and error and a whole lot of practice. Early in our dating relationship, Sam often tried to downplay and almost hide his vision loss. I didn't really understand the full extent of his vision loss until we'd been together for quite some time. There have definitely been a few failures on my part along the way. Luckily, we can both get a laugh out of the sometimes embarrassing situations that can arise.
Leading the way
One time we went to the movies, the previews had started so the theater was quite dark. I headed up to the second row turned around to ask Sam if this was close enough for him and realized there was no one behind me. I didn't realize that with the lighting so low, Sam was almost completely blind. He couldn't see me, or the seats, or anything else. He stood frozen near the entrance. I took his hand and led the way back down to our seats. I've since learned that if we're visiting somewhere with low light, it's a perfect chance to hold my honey's hand and help him navigate.
Misjudging vision loss
On the opposite end of this spectrum, there were times that I misjudged how much he could NOT see. Once he was cooking at the stove and I was standing off to the side talking to him while he cooked. I was wearing a skirt with tights and my tights were slipping down. So annoying right? Well, I thought there was no way he could see me. So, I started scooting my tights up, starting at my knees and working my way up my legs. Just as I was about so scoot my skirt up to adjust my tights further Sam stopped me with a, "You do know I still have decent peripheral vision right?". Uh, no, no I did not. That time around, it was I that was red in the face and he was laughing.
As I mentioned, my husband lived with vision loss for many years before we met. He had learned how to adapt. If your loved one loses vision later in life, you may be there for that transition. Don't be tempted to do everything for them. Definitely be a support to them. But encourage them to learn how to do things on their own. Reach out to others to hear about their solutions to problems as you encounter them. Feel free to research what assistive technology may be helpful for them. But doing everything for them can make your loved one dependent on you. This can be difficult for the VIP and also can lead to resentment from you.
Two decades in, we've pretty much found our rhythm. When eating out I can usually tell if I'll need to read the menu for Sam or if the menu is printed in a way that he can decipher it with the help of his handheld magnifier. If we watch a show together and text pops up on the tv, I read it aloud to him without even thinking. (Fair warning, I'm in such a habit of this, I often read it aloud even if I'm watching tv with someone OTHER than my husband.) Sam can still mow the grass, but I try to get outside before he finishes so I can point out any places he's missed before the mower gets put away. It's easier for me to do the trimming and edging though.
Finding ways to help
What I have found as the best way to assist Sam is to just offer help. I don't assume he needs help. If he seems to be struggling with something, I don't just jump in and take over. I simply ask if he'd like help. I also try to feel out situations or environments as they come up. Alert him if I notice a broom leaning against a wall or a shallow step that isn't very visible. If we bump into a friend, I greet them with their name so that Sam also knows who is there.
Adapting to vision loss
So my best advice for someone learning to be helpful to their visually impaired loved one? Don't baby him, he can still do almost everything he did before, maybe just slightly differently. Be patient, learning how to adapt to his vision loss especially when it's new can be scary, frustrating, and time-consuming. Expect a few grouchy moments and "I don't need your help!" retorts. And have a sense of humor, because life is more fun when we can laugh together.
Do you feel that you've maintained independence with macular degeneration?