If you get your hair cut regularly and you like your stylist, you talk. Jessica, who’s cut my hair for a decade, sets her iPhone to read my blog aloud during her commute – I love that! – and when I visit the salon we chat about the latest posts. One day we were discussing women as caregivers and she said, “You need to talk to Gwen.”
A longtime client of Jessica’s, Gwen retired in 2015 as breaking news editor at USA Today. Her husband, Jim, had a stroke in 2002. This event changed their lives profoundly, and it happened when Jim was only 62. He’s 83 now, so that’s two decades of caregiving – and counting.
You might assume that their story would be bleak, but it isn’t. To be sure, Gwen feels stretched thin a lot of the time. But I was surprised to hear her say their love is now “stronger and more expressed” than before the stroke. And I was startled to learn that it’s possible to be pickpocketed on the street by a thief in a wheelchair. Read on.
CATHY: The blog centers the experiences of women from late middle age onward, and caregiving has been a constant thread. Your husband had a stroke in 2002, when he was in his early sixties. Want to tell me about that?
GWEN: We were on vacation, in a cabin in the Outer Banks. I woke up around 4:00 a.m. and Jim was hiccupping violently, throwing his body against me. He got up to go to the bathroom, and he banged against the bed as he did so. He said, “I’ve got a really bad headache.” And he just started seeming weird. I can’t quite describe it. I said, “Honey, what’s my name?” And he said it. I said, “Where do I work?” I had to put that question a couple of different ways, and finally he said, “USA walnut.” Not USA Today, but USA walnut. I dialed 911, and by the time they got there he had fallen and was wedged between the toilet and the wall and couldn’t get up.
They took him to a hospital in Virginia Beach, and he was in a coma for a few days, medically induced. He spent 10 days in intensive care. Then another ambulance took us back to Washington, where he was in Washington Hospital Center for a week and National Rehabilitation Hospital for three weeks.
The first year
GWEN: The whole first year was just awful. He was in a daze all the time. We’d be going to a doctor’s appointment, or to the grocery or a restaurant, and he’d ask me, “Where are we going again?” And his aphasia – you know what aphasia is? It’s a cognitive processing thing. The word is in your brain, but it doesn’t come out. A commercial truck would go by that said “window washing,” and Jim would be saying something entirely different to me, but the noun would be “window” instead of what he meant to say. He couldn’t answer questions like what’s your date of birth. He knew it was July 5, but he couldn’t figure out the year.
I went back to work after about six weeks. He was on my health insurance, but of course we instantly lost Jim’s income, with no disability coverage.
CATHY: What was his job?
GWEN: He was a manager at a liquor and wine store.
CATHY: Was he able to work again?
GWEN: He was not. He became obsessed with the idea that he wasn’t bringing in any money, and one day he called the liquor store and said he wanted to come back. They said, “Oh, good! Come on down!” I sat on a park bench while he went into the store, and he came back and said, “Well, I talked to the owner, and he says I need to talk to the manager.” When he finally reached the manager, the manager said he had to talk to the owner. And that was the last we ever heard from them.
CATHY: Did you hire any aides?
GWEN: No, because we couldn’t afford it, for one thing. I would call him from my office a couple of times a day. I was wired all the time, always on edge.
“We’re together every minute of every day”
CATHY: What’s a typical day like for you now?
GWEN: I took a buyout from the paper in 2015. Today Jim and I are always together, every minute of every day, with few exceptions. I take him to his doctor appointments. He’s tried to take the subway a couple of times and gotten lost, even though he was a regular subway user before. I do his medication. I always have to check: “Did you take your drugs this morning? Did you take your drugs this evening?” I do the shopping. I pay the bills. We were in bad financial shape for several years because of the crisis. But we cut back on restaurants, didn’t shop for clothes, and after a few years I got us back in shape.
CATHY: Can he do his own hands-on care, his grooming and so forth?
GWEN: His physical self-care, he can.
CATHY: Can he help around the house in any way, such as do the dishes?
GWEN: He makes the bed. He’s capable of taking out the trash. But right now, in our kitchen, we have three bags of recycling and one overflowing bag of trash that I moved right into the doorway of the kitchen, so he would have to climb over it or move it. It’s still sitting there. His attention is quite lacking.
CATHY: I’m hearing a lot of stress in your voice. It seems like things are better than they were right after the stroke. But life changed in certain ways, and it’s not going to change back?
GWEN: Jim used to say, “Let’s grow old together.” And now we have, but I didn’t quite imagine it would be like this. He doesn’t always remember things. At the beginning of every week we talk about our appointments for the week, and every day we review, and he still may not remember. But his intellect is still there. He’s still interested in politics. He reads a lot, though not as fast as he used to. For the first year or so he couldn’t read at all.
I’m so concerned about Jim’s dignity. I want him to pay the bill at a restaurant, although I keep an eye on it. I want him to feel he’s still who he is.
Mugged by a guy in a wheelchair
GWEN: One day I was out, and I got an alert on my phone that there was a mugging in my neighborhood. When I got home, I opened the door and Jim was standing there. He said, “I got mugged.” He had gone to his favorite place to eat, two blocks away. Along comes a guy in a wheelchair –
CATHY: Are you serious!
GWEN: A guy in an electric wheelchair rolls up, puts his hand in Jim’s pocket, and takes out his wallet. Jim said, “I tried to stop him.” But he couldn’t.
CATHY: And the guy buzzed off in his wheelchair?
GWEN: He buzzed off in his wheelchair, yes!
CATHY: And Jim couldn’t run after the wheelchair.
GWEN: No, he can’t walk fast, much less run. He rarely goes out without me. If I’m going somewhere, he always says, “Want some company?” He wants to get out of the house, so we go together. One day he was watching TV or something, and I went out by myself. And I just felt freer.
“We need each other more”
CATHY: Obviously the husband-wife relationship has changed. How do you find your way to a new normal that works to some extent for both of you?
GWEN: This is a funny thing to say, but in a way our relationship is better. Our love is stronger and more expressed. Partly that’s because I don’t work anymore. When I used to work, Jim was usually in bed already when I got home. We’d barely see each other. And now we’re together all the time. We sit together on the couch, and sometimes we’re watching TV or we’re both reading, but we’re touching. We touch more than we did, and we talk to each other about our love more than we did, and we need each other more.
I think when you nearly lose somebody, you realize how awful that would be for you, and that brings up the feelings that were further back. They’re on the surface now. Several times a day, I think about where I would be without him. He doesn’t do anything for me except be there for me. I finally am mostly accepting of that fact.
“I feel lucky”
CATHY: Are things still getting better gradually, or are they plateaued?
GWEN: Physically, he has plateaued. He’s 83 years old, and he has a brain injury and a heart problem. But he still takes classes to work on his speech.
During the first year we met Darlene Williamson, a speech pathologist who ran a clinic at George Washington University. It had always been her dream to start a place for stroke survivors, so she did. She asked us to be on her consumer advisory council, and we’ve been involved with the Stroke Comeback Center in Vienna, Virginia, ever since. It’s a wonderful place. It’s mainly small group therapy, five or six people in a class with a speech pathologist. It’s a place where stroke survivors, who are members there, like to hang out. They can watch TV or chat with their friends who are just like them, so they don’t feel self-conscious. It’s a nonprofit, based on ability to pay. That’s important, because insurance runs out pretty quickly for therapy, as ours did.
I helped start a support group we call the Caring Connection, for family members at the center, and I’m quite involved with that. I’m better off than many of my friends in the Caring Connection whose loved ones face much tougher challenges with their speech, mobility, even eating and other functions. So I feel lucky. I feel lucky that he’s still here. Sometimes I may have to ask him three times to understand what he’s talking about, but we can still talk and enjoy our common interests. We’re happy together. So that’s mostly my story.
Loved it as usual, Cathy. Fortunately, my condition isn´t as bad as theirs. But when I was diagnosed with spinal degeneration , Juan has really stepped up. He does the laundry,helps me with the watering of the garden, and takes me to my appointments. My feeling is the same as Gwen´s. We feel lucky to have each other, and our relationshiop has gotten stronger.