What I learned about caring for someone with AMD

By Joseph Edelman, as told to Halli Levin

I have been married to my wife, Jill, for over 40 years. We have been together since our teens. She is my everything. When we learned in November 2014 that he had advanced macular degeneration, or AMD, we were both shocked. We are active and travel a lot and have eight grandchildren. I was afraid that the AMD would affect Jill’s quality of life and that she would become depressed.

It’s true that we’ve had to adapt because of Jill’s AMD. But our lives are still busy, happy and full. We can still do many things, such as babysitting our grandchildren and visiting countries like Israel. We are still a team and we are dealing with Jill’s vision loss together.

While I help Jill more than ever, I don’t like to call myself her caretaker. Jill is very independent and does a lot alone. But I love him so much that I automatically want to take care of him. Here’s what I’m trying to do to make her life easier:

i’m trying to keep her safe

Let’s face it, Jill is hard to resist. She wants to go out and live her life, and there’s no reason why she can’t. For example, Jill is still legally allowed to drive, although she only drives on roads she knows well. But if a drop of rain falls on the road, I call him and ask him to come home immediately. When she leaves an hour before dark, I call to remind her to come back. Till the time she reaches home safely, I am continuously coming under her grip. I can’t live a day without her – I don’t want her to get hurt.

I also try to keep her safe at home. I’m constantly searching the sink to make sure there isn’t a knife that can cut it. I have automated lights in my house so that they turn on when he enters the room. The lights are all LED bulbs, which are bright but soft, so there’s less glare for Jill. I keep magnifying glasses and flashlights around the house so she always has access to them when she needs them. (I’ve even been known to check her purse, to make sure she has a set too.) Every morning, as soon as I wake up, I make sure that on the bedroom floor or on the stairs There’s nothing like a pillow. , , towels or shoes on which she could have fallen.

i keep a close eye on his mood

Jill stopped working as a nurse in 2017 because of her vision. She was devastated. She was so depressed that for a year she did not want to leave the house. I was determined to find ways to get her back out into the world. I’m the kind of guy who likes to fix things. Unfortunately, I eventually realized that no medical procedure, doctor or gadget could give her back.

What really saved Jill were our grandchildren. She started seeing him when his parents were at work. Those kids gave Jill the balance and comfort she needed. While the COVID-19 pandemic was devastating, it also gave Jill a sense of purpose. Our two daughters and their husbands were considered essential workers, so they had to report to work. Jill could take care of her children. It did wonders for her mood and self-esteem. But I still monitor her closely, and if she seems sad or upset, I encourage her to talk to me about it.

I serve as a second set of eyes and ears

Jill is very picky about her medical care. She will go to great lengths to find the doctor she wants. For example, her retina specialist is about an hour away. This means we schedule a day for Jill to be at the ophthalmologist once or twice a month. I take him there, but I try to be a lot 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 if there were side effects. Although it is his point of view, we are a team. Although she is a nurse and used to work with medical professionals, I know she appreciates my perspective.

i’ll make sure jill sees the world

We don’t let Jill’s AMD get in the way of the trip. In recent years we have been to Israel, Iceland, Greece, Italy, France and Spain. I am very protective of Jill. It’s hard for him to see curbs, so I always point them out, as well as any uneven sidewalks. It drives her a little crazy, but it makes me happy. The good news is that even though we’re in our sixties, we still hold hands like newlyweds. It’s an easy way for me to make sure she’s safe and she doesn’t even know. A few months back we went to Iceland with two other couples. One afternoon the men and women separated and went their separate ways. I must admit that I was a little nervous when we parted ways. In my mind, no one can take care of Jill the way I do.

i’ll let jill take care of herself

I’ve had my own health issues in recent years – a double knee replacement and open heart surgery. Jill put her nursing skills to good use on me! I am a difficult patient; I don’t like staying at home and doing nothing. But Jill was there to follow me around the house with her magnifying glass to make sure my cuts didn’t get infected. She also accompanies me to every doctor’s visit. She is mindful of my health and as a medical professional she knew exactly what questions to ask.

I’ve learned to give Jill her freedom

Jill has a “Go Get ‘Em” personality. If she wants to do something, she will not let anything stand in her way. I’m with her – If she wants to go on holiday the next day, I’ll be ready to book flights on my computer. Sometimes I get too protective of Jill, and I know it bothers her. But she tells me in her sweet 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, but I know I have to give him space. She is her own independent woman. If she wants me to act as her second pair, she will let me know. It’s a partnership—just like our marriage.


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