What I Learned About Caring for Someone With AMD
By Joseph Adelman, as told to Hallie Levine
I’ve been married to my wife, Jill, for over 40 years. We’ve been together since my teens. She’s my everything. When we learned in November 2014 that she had advanced macular degeneration or AMD, we were both scared. We’re active and travel a lot and have eight grandchildren. I worried that AMD would affect Jill’s quality of life and she’d become depressed.
It’s true that we’ve had to adjust due to Jill’s AMD. But our life is still busy, happy, and fulfilling. We’re still able to do many things, like babysitting our grandchildren and visiting countries such as Israel. We’re still a team, and we deal with Jill’s vision loss together.
Although I help Jill more than I have in the past, I don’t like to refer to myself as her caretaker. Jill is highly independent and does a lot on her own. But I love her so much that I automatically want to care for her. Here’s what I try to do to make her life easier:
I Try to Keep Her Safe
Let’s face it, Jill is hard to hold down. She wants to go out and live her life, and there’s no reason why she can’t. Jill is still legally able to drive, for example, although she only drives on roads that she is very familiar with. But if there’s a drop of rain on the road, I call her and ask her to come home right away. If she’s out an hour before dark, I call her to remind her to return. I’m constantly hawking at her until she’s safe at home. I couldn’t live a day without her — I don’t want her to get hurt.
I try to keep her safe at home, too. I constantly prowl the sink to make sure there are no knives in it that could cut her. I’ve installed automatic lighting in our home so that they come on whenever she walks into a room. The lights are all LED lights, which are bright but soft, so there’s less glare for Jill. I place magnifying glasses and flashlights all over the house so that she has access to them whenever she needs them. (I’ve even been known to check her pocketbook to make sure she has a set in there, too.) Every morning, as soon as I get up, I make sure that there’s nothing on the bedroom floor or stairs, like pillows, towels, or shoes that she could trip on.
I Keep Close Tabs on Her Mood
Jill stopped working as a nurse in 2017 because of her vision. She was devastated. She was so depressed that she didn’t want to leave the house for a year. I was determined to find ways to get her back out into the world. I’m the type of guy who wants to fix things. Unfortunately, I finally realized that no medical procedure, doctor, or gadget would be able to give her vision back.
What really saved Jill was our grandchildren. She began to watch them while their parents worked. Those babies gave Jill balance and the solace she needed. While the COVID-19 pandemic was devastating, it also provided Jill with a sense of purpose. Two of our daughters and their husbands were considered essential personnel, so they had to report to work. Jill was able to watch their kids. It did wonders for her mood and self-esteem. But I still watch her closely, and if she seems depressed or upset, I encourage her to talk to me about it.
I Serve as a Second Set of Eyes and Ears
Jill is very particular about her medical care. She will go far to find the doctor that she wants. Her retina specialist, for example, is about an hour’s drive away. That means once or twice a month, we carve out a day committed to Jill’s eye doctor. I drive her there, obviously, but I try to be so much more. When Jill’s doctor recently asked her if she wanted to try a new medication, it was a decision we made together. We both decided that since the drug had just been approved, we wanted to wait a year to see the side effects. While it’s her vision, we’re a team. Although she’s a nurse and is used to working with medical professionals, I know she values my perspective.
I Make Sure Jill Sees the World
We don’t let Jill’s AMD get in the way of travel. Over the last several years, we’ve gone to Israel, Iceland, Greece, Italy, France, and Spain. I’m very protective of Jill. It’s hard for her to see curbs, so I always point them out, as well as every uneven sidewalk. It drives her a bit crazy, but she humors me. The good news is that even though we’re in our 60s, we still hold hands like newlyweds. That’s an easy way for me to make sure she’s safe without her realizing it. A couple of months ago, we went to Iceland with two other couples. One afternoon, the men and women split off and went their own ways. I must confess when we were separated, I was a bit of a nervous wreck. In my mind, no one can take care of Jill like I can.
I Let Jill Take Care of Me
I’ve had my own share of health issues over the last few years — a double knee replacement and open heart surgery. Jill put her nursing skills to good use on me! I’m a difficult patient; I don’t like having to stay home and do nothing. But Jill was there to chase me around the house with her magnifying glass to make sure my incisions weren’t infected. She also accompanies me to every single doctor visit. She stays on top of my health, and as a medical professional, she knew exactly what questions to ask.
I’ve Learned to Give Jill Her Independence
Jill has a “go get ‘em” personality. If she wants to do something, she won’t let anything stand in her way. I’m right there with her — if she wants to go on vacation the next day, I’m at my computer ready to book the flights. Sometimes, I’m too protective of Jill, and I know it annoys her. But she says to me, in her lovely way, “It’s well and good that you want to protect me, but you don’t always understand what I can and can’t see, and what I can do.” I’ve learned to ask her if she needs help, and if she doesn’t, I back off. It’s not always easy to do that, but I know I need to give her room. She’s her own, independent woman. When she needs me to act as her second set of eyes, she’ll tell me. It’s a partnership — just like our marriage.
