A Caregiver’s Story

Transcript of Interview: “A Caregiver’s Story: When Roles Reverse”

Mike Barnes:

You know, I think that we’ve learned so much as we’ve started parenting our aging parents. Even before this group started, we learned so much, and some people have turned this into an art form.

Kim Barnes:

Well, everybody has a story, and some people can tell those stories really, really well. One of those is Jim Comer. He is a speaker and an author, teaches people how to speak, but also has written a book about his experiences as a caregiver.

Mike Barnes:

Because it was a role that you didn’t necessarily anticipate yourself being in.

Jim Comer:

I did not apply for this job, to put it mildly. It came, you know, it came when I was sound asleep. I was living out in California, working for a big HMO writing speeches. I’m sound asleep at seven in the morning, the phone rings. I’m half awake, I kind of reach for it, and it’s my parents’ next-door neighbor in Dallas. She has never called me in 34 years. You know that’s not going to be a good call. I knew it was right away; I knew this is not going to be good. She immediately said, “Jim, your daddy is walking around in circles in the front yard in a daze, and I think he’s having a stroke.” And she was right.

I mean, I called home, I tried to get him on the phone, and he wouldn’t come. He was yelling in the background but wouldn’t come for the phone, and I knew that her sort of sidewalk diagnosis was right. So in hours, I was on a plane to Dallas where they’d been living for 34 years. By the time I got there, I loved this, the neighbors had gotten my father to the hospital by telling him he was going for Mexican food. That’s how they got him in the car.

Kim Barnes:

Wow, yeah, right.

Jim Comer:

I mean, so thankfully, they got him to the hospital. The neighbors got him to the hospital, but something happened at the hospital. I think the stroke really happened at the hospital because by the time I got there, he couldn’t walk, he couldn’t talk, had no control of his bodily functions. And mother, with her dementia, didn’t really understand what was happening. I walked into that scene, and it was not easy.

Mike Barnes:

And not only did their life change forever, in many ways so did yours.

Jim Comer:

My life changed absolutely forever in that moment. The moment that I realized he had the stroke and when I got there, the doctors told me he could stay here in this intensive care for one week, and then you have got to get him into rehab. Of course, I realized the rehab couldn’t be in Dallas because we had no family there, no relatives. They were all in the Austin area. So that very first week, a couple of days later, I flew down to Austin, had some cousins here, and they took me around. We went to four rehab centers in one afternoon, and they all looked the same to me. I’d never been in one.

Mike Barnes:

Right, right, because why would you?

Jim Comer:

Right, one after the other. Finally, I chose St. David’s because a nurse smiled at me.

Kim Barnes:

Really?

Jim Comer:

Yeah, I got this great smile from a nurse. I said, “That’s it,” because that’s how I hoped they would treat my dad. They said that they would bring him back in a, you know, they would send a car for them, you know, and they’d bring them back that next Monday. So I thought, great, you know, they’re going to send an ambulance for my dad, terrific. Then of course, I have to fly back home, and there’s my mother. She said, “It’s okay if daddy goes down to Austin, but I am not leaving my house by myself.” I’m going, “Mom, you have to leave your house,” because she couldn’t be alone. He’d taken over everything.

So my job was then to find a way to get her in the car to go down to Georgetown, right here outside of Austin, where my cousins had agreed to keep her until I could figure out what to do. But I had to get her in the car. I came up with this idea that I call it therapeutic lying. So the day that they were taking dad down in the ambulance, I wanted to take mother down the same day. I bet everything on this big lie. At 8:30 in the morning, I packed for her the night before. I go to her breakfast table, there she is with the Dallas Morning News, and I say, “Mom, how would you like to go get some ice cream?”

Well, my mama loves ice cream, even at 8:30 in the morning. She put down the paper, she got up from the chair, real smile, and walked with me out of the house to her car, got into the car, and we drove away from her house of 34 years, and she never saw it again.

Mike Barnes:

That’s tough.

Jim Comer:

I knew she would never see it again.

Kim Barnes:

Right, but you knew she couldn’t stay there.

Jim Comer:

Oh no, she absolutely couldn’t stay there. She didn’t know what was going on. Daddy had taken over everything in the previous five years as her dementia got worse and worse. She couldn’t possibly have been by herself. But I want you to know, I did stop at the first Dairy Queen.

Kim Barnes:

You didn’t wear ice cream.

Jim Comer:

Yes, big gooey chocolate sundae, made her happy. Then we hit headed for I-35. I’m heading down to Austin, and I keep waiting, you know, when is she going to ask where we’re going. She never did. I kept waiting. She started talking about the colors of passing cars, which I was happy for her to do. We made it past Waco, got all the way to Georgetown, got out, kissed her goodbye, and I headed to the airport because I’d been gone 11 days. I had a full-time job and I’d already used my vacation at Christmas. This was February, actually 26 years ago this week.

Mike Barnes:

Wow, wow, wow.

Jim Comer:

Yeah, I just noticed that when I looked down a minute ago. I was looking at my screen and it was like, “February? Oh my God, it’s this week.” So that was the first part. Then I tried for, oh, I say six months, I tried to go back and forth from LA to Austin every other weekend. Things kept coming up. They threw father out of the rehab.

Kim Barnes:

Yeah, he was expelled from rehab because he was using bad language to some nurses.

Mike Barnes:

Oh no.

Jim Comer:

Oh yeah, not kidding. What are you doing when the head of the rehab calls you and says, “Sorry, your father can’t stay here. You need to find a new place,” and you live not even close?

Kim Barnes:

Right, the next weekend you had to be there.

Jim Comer:

I had three days. By this time, mother was driving my cousins crazy. They were not saying that, but I knew she was. I needed to find assisted living for her and skilled nursing for him. I was the luckiest guy in the world; I found them in the same place on the very first day.

Mike Barnes:

Wow.

Jim Comer:

Because that’s very overwhelming.

Kim Barnes:

Oh yeah.

Jim Comer:

And all that travel had to be wearing you out as well.

Jim Comer:

Thank goodness my father had a large bank account because I didn’t. He was paying for the travel because my credit card wouldn’t have been able to do it. After six months, I realized either I had to bring them to California, where everything was much more expensive, and they had no support system other than me, or else I had to quit my job and leave my friends and my house and my church and move to Texas where I hadn’t been in, you know, ever, except in college. But I chose to come back, and it was the right choice.

Mike Barnes:

That was a tough decision.

Jim Comer:

Very. I spent six months trying not to do it, but it just, you know, so many things kept coming up. I didn’t know if he was going to have another stroke. I didn’t know how fast her dementia would move. It was just too many unknowables, and I just felt I needed to be there because I didn’t want to follow my cousins. They’d been helping a lot, but they had their own kids and parents and jobs.

So I finally get back to Texas in October, and my father had had a 100% comeback over that time. By August, he was walking and talking and telling me how to drive the way he always did.

Kim Barnes:

Right, you knew he was feeling better.

Jim Comer:

He couldn’t drive himself, but he was back. So he got into independent living, and fortunately, he was able to persuade them to take mother. She really didn’t belong in independent living, but he was a salesman, my father. So he used his sales ability to get them to agree to let her in on a trial run, which lasted for five years.

Mike Barnes:

Oh wow.

Jim Comer:

Yeah, we were real lucky. So I get here in October with my U-Haul, sold most of my stuff, and boy, all of a sudden, I was dealing with dementia on a daily basis.

Kim Barnes:

Which is very different than flying in.

Jim Comer:

Night and day. People can fake it for a few days, and my parents were pretty good at that over the years, especially at Christmas. But when you’re there day to day, you really see it. I can still remember my mother had about, oh, she must have had 60 dresses in her closet. She would only wear five of them.

Mike Barnes:

Hmm.

Jim Comer:

I said, “This is yours. I gave you this dress.” “No, you didn’t. Do you want me to wear stolen clothes?” She said, “Jim, they’re going to put me in the hoosegow.”

Kim Barnes:

People outside of Texas don’t realize that that isn’t.

Jim Comer:

Right. She believed she was going to jail if she wore any except the five dresses that she thought were hers.

Mike Barnes:

So now that you were doing this on a daily basis, what kind of things did you do or learn to help you cope with it?

Jim Comer:

The biggest lesson came about, oh, about three or four weeks after I moved here. Mother was over at the independent living, and she said she wanted to go see her sister, her sister Estelle, which would have been a perfectly logical request except for one tiny fact—Estelle had been dead for eight years. I made the rookie caregiver mistake of telling her that. I said, “Mama, we can’t go to see Estelle. She’s in heaven.” My mother looked at me, and it was as if that was brand new. She’d never heard it before. She started crying. I mean, sobbing, her shoulders shaking. She cried for, I don’t know, 10 or 15 minutes. She cried a lot, and I’m thinking, all I did was tell her the truth. But that was the truth she didn’t need to hear. She just didn’t need to hear it.

The next day, I was freaked out by this, and I got an appointment with an Alzheimer’s expert. I walked in the office and said, “I don’t think I can do this.” She said, “Honey, from what I hear, you don’t have much choice.” She was right. I said, “But what do I do?” Then she gave me the best advice I ever got about caregiving. She said, “Quit trying to drag your mother into your world. She can’t go there anymore. Instead, you have got to go into her world.” I got it. The second she said it, it was like a click. I continued going into her world for the next 14 years.

Kim Barnes:

Wow.

Jim Comer:

Yeah, over those 14 years, you can imagine how much things change.

Mike Barnes:

Oh yeah, lots.

Kim Barnes:

Because you had broken—wouldn’t you have broken—weren’t there broken hips and broken bones and things like that?

Jim Comer:

Yeah, I got to take the first four or five years in independent living. I got this false sense of security that things were going pretty well because I got to be friends with everybody. They, you know, I would have Sunday dinner with them. The food was good, and we had fun. Then Christmas Eve of 2000, my mother fell in her room in the middle of the night going to the bathroom, I’m sure, and broke her hip. That changed everything. She had to have an operation the next morning on Christmas Eve. She was out of her mind for two or three days from the anesthetic, and then, of course, she had to go to rehab. But she couldn’t make it in rehab because of the dementia. They threw her out—not threw her, I shouldn’t say that—they just said she couldn’t stay because she couldn’t make measurable progress, which is what you must do for Medicare to pay for it.

So they gave me one day to find a nursing home for her. I wanted it to be the Wesleyan because they’d been good in independent living, and they had one bed open. It was in a room with three other people on the first floor, looking at the ugly back parking lot. They’d been on the fourth floor before, looking at trees. Do you think my mama cared? Never. She was in that room with three roommates for the next eight—let’s see—eight years.

Mike Barnes:

Wow.

Kim Barnes:

Wow.

Jim Comer:

Almost nine years. She never mentioned a roommate. As far as she was concerned, they didn’t even exist. It was her room.

Kim Barnes:

Interesting.

Jim Comer:

Interesting.

Kim Barnes:

Her channel didn’t care what the outside view was.

Jim Comer:

I cared at first because I thought it was a big deal, but of course, it wasn’t a big deal. Ultimately, I learned, oh, I like this room because it’s just one door from the nursing station. Right where you want to be—near the nursing station.

Kim Barnes:

Okay, good tip.

Jim Comer:

I was thinking about flowers and trees and view. Not important at all. So when I got smart enough to realize that, I kept her there, even when we could have moved her to a smaller room, because I wanted her in that location. There are just so many things you don’t know going in.

Mike Barnes:

Right.

Jim Comer:

Yeah, I was the king of not knowing.

Mike Barnes:

And you know what you do now.

Jim Comer:

I know now. I think that one of the things that people get from the book is that I share all my screw-ups, and there were many. So by me sharing them and then overcoming them and accepting that I don’t know everything, I’m going to have to try faking it a lot. That gives them permission to do it, and also, they see that if this guy could do it for 14 years, surely they could do it.

Kim Barnes:

Surely.

Jim Comer:

I put it all out there, and I put all the—because a lot of times, you are faking it. Many times, you don’t really know the right thing to do, and you go with what your gut says or what you hope is right. Sometimes it is right, sometimes it’s not, and then you adjust. I did a lot of adjusting over time, and funny things happened. I was going to tell you one.

Sunday dinner at independent living was great, the best meal of the week, so I always showed up. I can remember sitting there at the table, table six. I’m sitting right at the end, my father is right here, and I’m just taking a forkful of great roast beef. It was on the way to my mouth, and dad said loudly, “Jim, I want you to give me an enema after lunch.”

Kim Barnes:

I almost passed out. This was not in my game plan.

Mike Barnes:

Right, just the thought of actually having to ever do that and discussing it in front of everybody at the dinner table.

Jim Comer:

Yeah, I mean, he didn’t—to him, it didn’t matter at all, but it was like, “Let’s just say my services were not appreciated.” Didn’t do the best job, was never asked to do that again.

Kim Barnes:

Gotcha.

Jim Comer:

Yeah.

Kim Barnes:

Yeah, I mean, it’s a funny moment. You’ve got to be able to laugh at yourself and laugh at the situation so that you don’t go crazy.

Mike Barnes:

Right, because some of the situations you couldn’t make up even if you tried. The reality is much crazier sometimes than what you would even imagine.

Jim Comer:

Yeah, one night in skilled nursing, my mother got up. It was cold. By the time she’d fallen and broken her hip, she had a walker, and she never went any place without the walker or a wheelchair or something. But cold night, like we’re having right now, she gets up in the middle of the night and somehow loosens the thing around her. She’s not supposed to be able to get out of bed, but she found a way out. She got in bed with somebody else in the room. I guess the alarm finally went off, and the nurses came in. They’re looking all over, they didn’t see her where she was in the room. They start going down the halls all over the place. They’re looking all over. Finally, they come back to the room. There she is. They wake her up, and she said, “Leave me alone. I’m sleeping with my husband.”

Kim Barnes:

Oh, wow.

Jim Comer:

It was another person. She thought it was daddy. By that time, he’d broken his hip seven months after she did. He was in B-wing, she was in A-wing. We went from the wonders of independent living to both of them in skilled nursing in seven months.

Mike Barnes:

I know this is a loaded question because it’s not this simple, but what’s maybe one piece of advice or encouragement that you could give to people who are in the midst of this, of the things that you went through but they’re right in the thick of it?

Jim Comer:

I think the most important thing that I would tell them is that you are doing a wonderful thing to show up for your parents. You may not be doing it perfectly. You may not want to do it. You may have all sorts of issues with doing it. It may really be hard, but the truth is that as time goes by, you’re going to feel good about the fact that you did the right thing. You’re going to look back on it and say, “Yes, it was hard, but I did my part.” Lots of adult children don’t do their part. You’re one of the ones who—you know, my mom would say, “You’re going to get stars in your heavenly crown,” is what mama would have said. It was one of her many expressions, but you’re really doing the right thing to show up. I think if you realize that and give yourself some credit for that, it’s really, really important.

Mike Barnes:

You can tell not only from his stories that Jim’s not only a great author, but he’s one of the best professional speakers in the country. I know you share these stories around the country, helping people, and that has to be so fulfilling for you.

Jim Comer:

You know, I’ve spoken all over the place, and I still do. It makes me so happy when people come up to me afterwards and we get to have these personal conversations. I learn—they share what’s going on in their lives, and I’m able to sometimes really help them, not only from the speech but from our interactions afterwards, because it is tough. Even when you’ve got everything going for you, it is still tough. But it is rewarding. I strived in my life—you both know about me—I spent my years trying to be an actor in New York, a comedy writer, and a speechwriter for CEOs. I wanted to be rich and famous. Well, it didn’t exactly happen, but this was the most important thing I ever did: caring for my parents, writing this book, making these speeches, encouraging other people. That was what I was supposed to be doing. If you’d have told me that before it all happened, I would have said, “No way,” but it was the most important thing.

Kim Barnes:

Yeah, and it may be the most important thing that people watching this podcast right now ever do. Also, I would urge you, if you’re watching this and you’re, say, 60 yourself or 65 or in that area, make sure you have conversations with your own adult children about what you want and what you don’t want as you age. Make sure that you’ve got a will and powers of attorney so it’s going to be so much easier when it comes time for you to be cared for.

Mike Barnes:

Absolutely. We’ve definitely learned so much, and you know, everybody has a story to tell. Everybody has experiences to share, and that preparation is so important to hopefully make things move and go a little smoother.

Jim Comer:

Yeah, and you talk about that—there’s a fact, there’s an interesting statistic. You may have heard this: 7 out of 10 Americans do not have a will. 10 out of 10 are going to die, I guarantee you.

Kim Barnes:

Yes, right.

Mike Barnes:

Right.

Jim Comer:

And it makes it so complicated if you don’t.

Kim Barnes:

Yeah, yeah.

Jim Comer:

Even people who are smart, even people who know better, there’s something about doing a will that’s hard. People are like, “If I write it down, that means I’m really going to die.” Well, you’re going to die anyway.

Mike Barnes:

Right.

Kim Barnes:

Right. We always think we have more time, like, “Oh, I can get that done,” because it’s not a fun thing to talk about or think about. But also, we always think, “Oh, we got plenty of time,” and we don’t always.

Jim Comer:

Yeah.

Kim Barnes:

Yeah.

Mike Barnes:

Well, Jim, you talk about being rich and famous. You’re famous in our world. Thank you so much for all that you do for caregivers all over the world.

Jim Comer:

This was fun. I really enjoyed talking to you.

Kim Barnes:

All right. Thanks, Jim.

Jim Comer:

Okay, bye-bye.

Kim Barnes:

Yeah, everybody’s got a story to talk about. It’s so inspirational hearing somebody like that just give us ideas about how to live our lives, knowing that we have so much to do, but it’s so fulfilling.

Mike Barnes:

Looking for the humor—he always does a great job at that. Looking for that humor keeps us from crying a lot, so try to keep that smile on your face. Hey, if you have other topics you’d like us to talk about, please let us know at Parenting Aging Parents.

*This transcript is auto-generated. Please excuse any typos or mistakes.