Lost in Someone Else's Story

This is Peter Rosenberger and one of the reasons I wrote my new book A Minute for Caregivers is because I remember the sinking, despairing feeling of struggling as a caregiver. No one knew what to say to me. I didn't understand and others didn't understand me.

For decades I foraged along and tried to find my path through this medical nightmare that Gracie and I have endured for nearly 40 years. And I've learned to speak the language of caregivers. I speak fluent caregiver. No pastor, no counselor, no medical provider, no friend should ever throw their hands up and say I don't know what to say to that caregiver.

Because I do. Give them a copy. This book is called A Minute for Caregivers when every day feels like Monday. They're easy to read, one minute chapters that speak directly to the heart of a caregiver and you can get them wherever books are sold. A Minute for Caregivers when every day feels like Monday. Friends don't let friends caregiver alone. Welcome to Hope for the Caregiver here on American Family Radio.

This is Peter Rosenberger. This is the program for you as a family caregiver. Healthy caregivers make better caregivers. How do you feel today? Do you feel healthy? Do you feel healthy financially, emotionally, spiritually, physically, professionally?

If not, you're in the right place. Hope for the Caregiver is the conviction that we as caregivers can live a calmer, healthier, and dare I say it, a more joyful life while serving as a caregiver. The challenges don't necessarily get easier, but we can get stronger. We can become healthier and we can even be more joyful. That's the conviction we have here and I'm glad you're with us.

Hopeforthecaregiver.com. Some years ago, a close friend of ours called me up and asked me if I'd be willing to meet with a friend of hers for coffee and he was a retired physician who was taking care of his wife with Parkinson's and this is when we lived in the Nashville area and I did and I sat down with him. First thing I noticed was that he was a bit overweight. Now that's not uncommon for us as caregivers. I myself have succumbed to that at times.

I got so big I had to iron my shirts in the driveway. I mean, it happens. And we got to talking and I may have shared this story before with many of you, but it bears repeating because in this one meeting with this gentleman, I had the opportunity to witness the three things that plague family caregivers.

When I say plague, I use that word intentionally because they are a pestilence to us, if you will. And that is the three I's. The loss of independence, isolation and the loss of identity. So we're sitting there over a cup of coffee and I asked him, how are you doing? And he said, I miss playing golf with my friends. There's that loss of independence. There's that loss of identity. We talked for a few minutes more and then I asked him a simple question. Do you have the resources to bring in someone to help you a couple days a week with your wife?

Do you have the resources for that? And he stirred his coffee, looked down and he said, she's not comfortable with that. There's that loss of identity. He didn't speak from his own heart, his own opinion, his own ideas, but represented what his wife said. And I looked at him and I said, I didn't ask you what she was comfortable with. His head kind of snapped up and he was a bit jarred by that.

And I didn't mean any disrespect, but I said, I asked, do you have the resources to do this? And he looked at me and he said, yes. I said, how would you feel if you played a round of golf on Tuesday morning with your friends and went to the clubhouse, had a nice lunch, came home and your wife had had a bath. The house was straightened up.

She was in bed with fresh linens. And you had a meal prepared for that evening. How would you feel about that? Big tears filled his eyes. And he said, I can't imagine.

There was a group that I used in Nashville to help me with Gracie. And I knew the CEO of this company and they were great people. And I gave him the number and I said, you are one phone call away from making that a reality in your life.

Make the call. I said, let's pry your hands off the wheelchair and put them on the golf clubs one day a week where they belong. And he took a deep breath and he said he'd do it. And to his credit, he did. And he worked it out.

I think they had help for two or three days a week to come in. And this went on for several years. And then I got a text after his wife had passed and he wrote me the sweetest note. He said, you saved my life. I appreciate those words. I passed on what I'd learned. I was a steward of what I'd learned.

And that's what I'm doing with you all today on this program. The principles I share have bedrock under them. There's nothing else under them.

They are solid. You can lean on this. Healthy caregivers make better caregivers. It's just that simple.

And most of you all know my journey. Gracie lives with severe challenges. She does not benefit if I am fat, broke, and miserable. Just, you know, I mean, do the math.

It doesn't work. If I'm healthier, emotionally, physically, fiscally, spiritually, professionally, all of the above. Gracie benefits. And so does your loved one if you're healthy. But those three things, that loss of identity, that isolation, that loss of independence, those things cripple us as caregivers. And the loss of identity is the one I spend the most time with. And people say, well, you know, I don't have the resources. I have often found that it's not a lack of resources, but a lack of resourcefulness that keeps us in bondage to a lot of things. We're not going to be able to afford 24-7 care.

I can't. But that's not the goal, is it? The goal is for us to be healthier so that we can better care for our loved ones.

And I promise you that healthiness is within your grasp. And the first step towards you and me being healthier caregivers, healthier individuals, is dealing with that loss of identity. We don't know who we are. We don't speak from our own voice. We don't speak from our own heart. We've lost ourselves in someone else's story. Have you lost yourself in someone else's story?

If so, today's the day we can push back on that. I'll never forget talking with my friend. His wife was going through a pretty bad bout of esophageal cancer. And I asked him, how are you doing? He said, well, she's having a rough time right now and it's a pretty tough situation. And again, I looked at him in the eyes and I said, I didn't ask about her chart. I asked about you. How are you doing? And again, big tears filled his eyes.

Two different men, same response. When someone asked about them, when someone addressed the cry of their heart, that's when the tears come. And that's okay, by the way, that's a healthy thing.

Now we're having an honest conversation. I would imagine that most of you all can recite your loved one's chart pretty well. I mean, I know I can with Gracie's. I'm the one guy that knows pretty much all of her chart and I'm the repository of all of her stuff. So if a surgeon needs to know patient history and things like that, I mean, Gracie knows a lot of it, but a lot of it, she can't answer if she's going into surgery or coming out of surgery or all of the above. And I could provide this stuff with great clarity and conciseness.

And I imagine you can as well. We know our loved one's chart, but the question is, can we speak from the heart and not recite the chart? So when somebody asks us, how are we doing?

Are we going to give them the medical history? Are we going to speak from our hearts? How are you doing? How are you feeling? How are you? It's this question. How are you feeling? That launches us, however, timidly into a healthier lifestyle as a caregiver. How about it? You want to do that with me? We're going to talk some more about it.

If so, this is Peter Rosenberg. This is hope for the caregiver. Hope for the caregiver.com. Don't go away. We'll be right back. By the way, how are you feeling? Welcome back to hope for the caregiver. Hope for the caregiver.com. Glad to have you with us. This is Peter Rosenberg.

This is the program for you as a family caregiver. We're talking about a loss of identity. Actually, we're talking about the three I's. You've heard me talk about them before, but it is the crux of what we struggle with as caregivers. We lose our identity.

We lose our independence and we become isolated. And as I said in the last block, when I discussed those two gentlemen having trouble speaking from their own voice, in their own voice, in first person singular. Now, nowhere was that driven home to me better than when I was playing one time in church. And again, some of you may have heard the story, but I was in front of hundreds of people. My pastor had asked me to play as people were coming into the sanctuary. And this was at Covenant Presbyterian Church in Nashville. This is that church that had the horrific shooting earlier this year. And people, when they came in before the service, they were socializing.

It was pretty loud. And he thought, well, maybe get Peter to play and it'll be a little bit more reverent and allow people to just be more reflective and create an atmosphere of worship and calmness and so forth, which I was happy to do. So I got up there and I was playing and, well, let me step over to the keyboard and I was playing something to this effect. Now, these are great chords. Okay.

Let's just call it like it is. They're great chords. My piano professor would be very proud of me for this course, but nobody had any idea what I was playing. And I realized rather alarmingly that I was hearing Gracie's voice in my head.

I've been accompanying Gracie for a lifetime. And I was hearing her sing around those changes, what we call in Nashville, we call them the changes. I'm an improvisational player. And so I don't have a piece of music in front of me often. I'll just have a chord chart or sometimes the lead sheet, which is the melody and the chords, or basically I'm just playing it off the top of my head or from memory or whatever.

And so I'm not looking at a structured piece of music. I'm listening to the singer. In my case, it's usually Gracie and I'm playing around what she's singing. I am adapting my playing to whatever the soloist is playing or singing in Gracie's case.

You follow me? So I am responding musically, even though I know the framework of the song and I know the structure of the song, I'm responding to how they're interpreting the song. And so that's what I was doing in front of hundreds of people. And I realized there was no melody. And I'm sure there were people in the congregation who thought, wow, he's playing some nice chords.

What's that boy playing? I mean, it was the most trying 10 minutes of my musical career. And my piano professor, John Arnn, who's been on this program and I still talk with him fairly regularly, he had a practice of teaching us as pianists to go back and play a hymn, for example, if we're going to arrange a hymn to play it with one finger and play it as expressively as you can. Now, for those of you who play instruments, you know, if you're a trumpet player, for example, you're playing one note at a time, clarinet, saxophone, that kind of thing. But if you're a pianist, it is excruciating to play one note at a time. And you have to really think about that melody and to play it expressively, to really own it. And so here I am in front of hundreds of people and I've got to go back and play the melody.

Now, I didn't do it with one finger. I put the chords into it and I started playing it, but it was intense for me. It was a lot of work because I was just not thinking that way. And for many, many, many, many, many years, I didn't play the melody. I played for Gracie while she was singing the melody.

Now, you see where this is going as a caregiver. So here's what the song was supposed to sound like. Still great chords. But now I'm not only playing something. I am saying something. You hear the difference? I can still improvise, but I've got to keep that melody. You feel it?

The Bible tells me, the Bible tells me so. So the simple question for you as my fellow caregivers, what's your melody? What is your melody? Have you lost it? We start off in life speaking from our own voice as children.

We learned to do that pretty loudly, but somewhere along the line, our voices get stunted. And we, particularly in caregiving situations, lose ourselves in someone else's story. And it's not that their story is not important.

It is, but ours is important. And I had to come to a theological understanding of this. Jesus loves me. I spent a lifetime trying to get Gracie to Jesus. You know, that's what we as caregivers do sometimes. We, you ever feel like those guys that tore up the roof to lower that guy down to Jesus? You ever feel like that's kind of our life sometimes?

If we can just get this person to Jesus then we're all going to be okay? And I've often wondered why it was omitted from scripture of any action that Jesus or conversation or even a glance that he had with those people who tore up the roof. Now in the show The Chosen, I believe that when they did that Jesus smiled at them, gave them a glance, but there's no evidence in scripture for that.

I mean, I would think it probably did happen. He had to have noticed them. And I've often wondered why that was not included. But if I stop just there, my education on this would be stunted because if you look throughout other parts of scripture, you see where it is incredibly specific how God sees individuals that don't feel seen. And I talked about this last week with Hagar. In fact, that's the name she gave the Lord, Elroy, the God who sees. And you go to the example of Jesus talking to Nathanael in John 1.48. And Nathanael said, how do you know me?

Jesus answered him, before Philip called you, when you were under the fig tree, I saw you. And there are plenty of scriptures that reflect that. So we don't need to base our entire doctrine on one little episode where the people lowered the roof down, but it did cause me to scratch my head a little bit. And as a caregiver, I wonder how many of us stop there and think, well, it's more important for us to get our loved one to Jesus than us. And I think that's what that loss of identity fosters in us. The person in need becomes so all-consumingly important that we don't realize that the person caring for the person in need is also the person in need. And that's the foundation for this entire work that I do, is to see the caregiver.

Because I know that if the caregiver is in a better place, in a healthier place, is emotionally more stable, is physically more stable, spiritually more stable, then the care they extend to their loved one will reflect that healthiness. But we get so confused thinking we can't be healthy if they're not. If they're not okay, then we're not okay. And you know that old book that was out some years ago, You're Okay, I'm Okay, or something like that? What does okay mean? What does that mean, to be okay?

Are you okay? What does that look like to you? I would suggest to you that a biblical definition of that.

I can't speak to the worldview, the secular view of this, but I got a lesson in this from my dear friend Sam, who was out here in Montana with us last week. And Sam has a lot of mobility issues, a lot of neuropathy that has forced him to have to use a walker and a motorized chair at different times. And Sam has been a dear part of our lives for 40 years. He actually met Gracie before Gracie met him, because she was still unconscious in the hospital when he showed up as part of a ministry team in a church in Nashville.

And so he got to know her parents and so forth, and then he met me a couple years later when I came on the scene. But he wanted to come out here and spend some time with us, and I was asking him, you know, how are you doing, Sam? And I don't think he'll mind me sharing this.

If he does, it's too late. So sorry, Sam. But he said, you know what? My body is going through all kinds of challenges and all kinds of problems, but it's okay because I'm going to get a new one. In the meantime, I got work to do.

And Sam is a minister and a quite gifted one at that and an amazing teacher. And he says, you know, it's all right. My body's decaying and debilitated. It's not getting any better.

It's going to get worse. But I've got work to do and it's okay. And that's a man who's comfortable with his identity and who he is and his purpose and his mission. And I'd like to see myself get that way. I've got work to do. It's not everything I want it to be. I don't have all the circumstances aligned with what I'd like, but I have purpose.

I have mission. I know who I am. I know who I am in Christ. You see how that works with us, with our identity. That's playing your melody.

Okay. That's playing your melody. That's knowing your melody, no matter what's going on around you. If things aren't ideal, that's okay because you're okay, because you know who you are. More importantly, you know who you are in Christ. This is Peter Rosenberg and this is Hope for the Caregiver.

We'll be right back. You've heard me talk about Standing with Hope over the years. This is the prosthetic limb ministry that Gracie envisioned after losing both of her legs. Part of that outreach is our prosthetic limb recycling program. Did you know that prosthetic limbs can be recycled?

No kidding. There is a correctional facility in Arizona that helps us recycle prosthetic limbs. This facility is run by a group out of Nashville called CoreCivic. We met them over 11 years ago and they stepped in to help us with this recycling program of taking prostheses and you disassemble them. You take the knee, the foot, the pylon, the tube clamps, the adapters, the screws, the liners, the prosthetic socks, all these things we can reuse and inmates help us do it. Before CoreCivic came along, I was sitting on the floor at our house or out in the garage when we lived in Nashville. I had tools everywhere, limbs everywhere and feet boxes and so forth. I was doing all this myself and I'd make the kids help me.

It got to be too much for me. I was very grateful that CoreCivic stepped up and said, look, we are always looking for faith-based programs that are interesting and that give inmates a sense of satisfaction. We'd love to be a part of this and that's what they're doing. You can see more about that at standingwithhope.com slash recycle. Please help us get the word out that we do recycle prosthetic limbs. We do arms as well, but the majority of amputations are lower limb and that's where the focus of standing with hope is. That's where Gracie's life is with her lower limb prostheses. She's used some of her own limbs in this outreach that she's recycled. She's been an amputee for over 30 years.

You go through a lot of legs and parts and other types of materials and you can reuse prosthetic socks and liners if they're in good shape. All of this helps give the gift that keeps on walking. It goes to this prison in Arizona where it's such an extraordinary ministry.

Think with that. Inmates volunteering for this. They want to do it. They've had amazing times with it and I've had very moving conversations with inmates that work in this program. You can see again all of that at standingwithhope.com slash recycle. They're putting together a big shipment right now for us to ship over. We do this pretty regularly throughout the year as inventory rises and they need it badly in Ghana. Please go out to standingwithhope.com slash recycle and get the word out and help us do more. If you want to offset some of the shipping, you can always go to the giving page and be a part of what we're doing there. We're purchasing material in Ghana that they have to use that can't be recycled. We're shipping over stuff that can be and we're doing all of this to lift others up and to point them to Christ and that's the whole purpose of everything that we do and that is why Gracie and I continue to be standing with hope. Standingwithhope.com.