Audio Book Bonus

Hi, I'm Peter Rosenberger, and for this episode of the podcast, I thought I'd put out five chapters of my audiobook.

You can get the whole book unabridged at Amazon Audible, or you can get the Kindle version, the print version, whichever. But it's very affordable. It's like less than the price of a combo meal at Burger King. Every so often I like to put out bonus material like this, some music from Gracie or myself, and other things that just kind of help fellow caregivers along the journey. It's hard to caregiver.

It's harder when you're trying to do it alone. And this is why I do the show. And those of you familiar with the show and the callers and all the guests and wonderful interviews we have with folks, you're going to know some of these things. But if you're new to this podcast, here's the core message of everything we're doing encased in these five chapters. And you can see more about it at HopeForTheCaregiver.com.

Hope you enjoyed this, and feel free to share this with the caregivers you know. Part one. Head.

That's Head, H-E-A-D. And the quote from Proverbs 3-13 is, Happy is the man who finds wisdom and the man who gains understanding. And then another quote is from John Wayne. Tomorrow hopes we learn something from yesterday. Pilgrim. I don't know how to do a good John Wayne. Well, Pilgrim, tomorrow hopes we learn something from yesterday.

I don't know. And I like to put a lot of different quotes in the book, and I'll pepper them throughout, and I think you'll enjoy them. This is one from the group Chicago, and it was from a song written by Peter Cetera and James Pankow. I do believe I'm feeling stronger every day. Here's another from Mick Jagger and Keith Richards from the Rolling Stones. I'll never be your beast of burden.

My back is broad, but it's a hurting. And then Samwise to Frodo in The Lord of the Rings. I can't carry it for you, but I can carry you. Chapter one. Shock and awe. When I am afraid, I will trust in you.

Psalm 56 3. As caregivers, we sometimes experience flashbulb moments so shocking that the memory is seared into our brains for a lifetime. One of mine came at St. Thomas Hospital more than 25 years ago at 3 a.m. Memories intensify with engagement of all five senses, and that night each of mine felt slammed. The bitter taste of old coffee filled my mouth as I hunched over a stack of medical records while I fought against gagging from the nauseating stents of my wife's fresh vomit still on my clothes. Caffeine and stress fought against me as I tried in vain to steady my shaking hands and calm my heart down after watching her endure a seizure.

Ignoring the looks of nurses and staff, as well as the beeps of countless machines and various announcements over the hospital intercom system, I sat halfway down the dimly lit ward with my back against the wall and scanned over charts, lab reports and doctor's notes in the massive folder that bore my wife's name. Despite three years of marriage, that night served as my first opportunity to review the file that had steadily grown since Gracie's car accident at age 17 on November 18, 1983. After her wreck and lengthy recovery, Gracie returned to Nashville's Belmont University where I first met her. Mutual friends felt us a perfect match and from the moment I first saw her, I agreed. I agreed.

Peter, she's wonderful. You need to know that she had a serious car accident, though, that left her permanently hurt, one of Gracie's friends warned. Several others, including her family, repeated the admonition as our relationship grew, but with no frame of reference as to what the caution meant, I plunged ahead. Nodding my head with an understanding I lacked, I assumed that no matter what her injuries, I still wanted to meet her.

My limited understanding led me to think, how bad could the car wreck have been? After all, she's back at school and others were trying to set us up. As she walked toward me, I swear to you that the sun followed her every step.

Although noticing the limp, it didn't detract. This girl was beautiful in ways that I could not express. A nearby friend offered a squeegee to help with the drool flowing from my open mouth as I watched her head my way. Surprising me with her forthrightness, she walked right up to me, stuck out her hand, smiled, and said, Hi, Peter, I'm Gracie Parker. I need to sit down.

May I put my feet in your lap? Plopping her misshapen feet into my lap, we sat with the group of friends in the courtyard by the student center. Noticing the scars extending above the ankles and disappearing under her cropped jeans, I smoothly blurted out, Good lord, girl, what happened to you? With a direct look, her frank but understated remark was only, I had a bad car accident. A whirlwind courtship and three years of marriage later, I sat outside a hospital room in the middle of the night following my wife's grand mal seizure. This time I directed the same question to the pile of medical documents in front of me. Good lord, girl, what happened to you? Not even her family had read what I now studied. Pouring through doctors' notes, I realized Gracie's accident was unlike anything I imagined.

This was no fender bender resulting in a broken limb that would simply serve as a weather indicator for life. Turning the pages, one word just kept flooding my mind. Devastation. Tears hit a few of the pages as I hung my head in grief and hopelessness. For the first time in my life, I felt a despair that would hover over me for the next dozen years and one that still requires my vigilance to guard against.

Reading until dawn, I closed the massive folder and sadly noted that the cover stated, volume four of four. Before converting most of her records electronically years ago, now decades ago, the volumes grew to seven for just one of the twelve hospitals where she's received treatment. The events of that night forever altered me along with the way I view life, hospitals, doctors, other people, my wife, and even God. Although immature, I was devoted. My sincere desire to care for this extraordinary woman led me to begin this journey. I never imagined, however, that the road would contain such suffering, loss, heartache, self-sacrifice, failure, and love. My love for Gracie committed me to an existence dominated by constant brutal realities that would end with a funeral, but hopefully not mine. While my dying would remove me from the daily burden of caring, my death would also create an even greater hardship for the ones I love most.

So even driving off a bridge represented a poor option. That night in the hospital corridor, my heart sunk as I stared at a future full of relentless challenges with no expiration date. I felt trapped, but also understood the need for me to stay alive and healthy, a difficult place for a 26-year-old man, a difficult place for a 52-year-old man.

To date, Gracie's journey includes at least 78 operations that I can count, multiple amputations, not just both legs, but multiple revisions on both legs, treatment by more than 60 physicians in a dozen hospitals, seven different insurance companies, and medical costs cresting $9 million. As her sole caregiver for nearly 30 years, I have often recalled that shock and awe moment in the lonely hospital when I read her chart for the first time. Somehow pushing the massive despair into an emotional box, I threw myself into the task of fixing that which cannot be fixed and managing that which cannot be managed. My wife, my responsibility. Someone once asked, if possible, what would you say to your younger self?

Well, this book is the answer to that question. On these pages, I've condensed a lifetime of experience into what I hope will be a lifeline of help to my fellow caregivers. These pages contain the things I wish someone had communicated to me. Through it all, I've learned quite a bit about America's health care system. Through marriage to someone with extreme pain, disability, and chronic crisis, I've learned even more about perseverance, love, and relationships. It's not easy caring for a suffering human being, one who lives with a severe disability and intractable pain. I often tell my wife, you're easy to love, you're hard to love well. Armed only with a relentless persistence, a goofy sense of humor, a few smarts, and a degree in music composition, piano principle, I somehow keep the plate spinning.

When it comes to wannabe stand-up comedians who play the piano and take care of a disabled wife for decades, I am the best there is. Others may offer opinions about caregivers. Seems a lot of folks are talking about this subject. That's okay.

Everyone is entitled to an opinion. On the subject of how to help a caregiver, however, my experience trumps opinion. Whatever burdens my fellow caregivers struggle with, I can help.

I'm willing to put it all out there. The question is, are you willing to learn from the insights, wisdom, experience, and even failures gleaned from watching over someone with a broken body for three decades? And the quote on that page is, blessed are the flexible, for they shall not be bent out of shape. I love that quote. Here's another quote from Sandra Rankin, if you're gasping for air, you can't help other people. From Audre Lorde, I've come to believe that caring for myself is not an act of indulgence, it's an act of survival. And from 2 Thessalonians 3, 3, but the Lord is faithful.

He will strengthen you and guard you from the evil one. Chapter 2, The Delta Doctrine. Listen to this from Aretha Franklin and Ted White, it don't take too much IQ to see what you're doing to me, you better think. That was from the Blues Brothers, I think she sang that song.

That was a good movie. One day while flying to Atlanta on Delta Airlines, duh, everything leaves through Atlanta, Delta, I've discovered that flight attendants state the best advice for caregivers all day long. Listen to this, in the unlikely event of the loss of cabin pressure, oxygen masks will drop from the ceiling. Securely place your mask on first before helping anyone next to you who may need assistance.

We've all heard that. That small directive which I call the Delta Doctrine contains applicable wisdom for so many circumstances, but probably none as poignant as for those of us serving as a caregiver for a chronically ill or disabled loved one. Compassion and love often mistakenly lead us to hold our own breath while we try to help someone else breathe.

Once we make that decision, it's only a matter of time before we find ourselves gasping for air. And if we're unable to breathe, how can we help anyone else? Many of America's 65 million caregivers desperately try to assist a vulnerable loved one while growing dangerously close to blacking out themselves. Grabbing the mask first is not a sign of selfishness, but rather the whisper of wisdom.

Unfortunately, that soft voice is hard to hear over their often deafening cries of someone we love. Those who push the wheelchair serve as the critical team player for a suffering patient. Sadly, too many caregivers don't know how to create a sustainable care structure for themselves.

Simply getting sleep and eating a proper diet is not enough. Caregivers must remain healthy physically, financially, emotionally, professionally, and spiritually. But staying healthy is impossible if we don't reach for the mask first. Help is available, but caregivers must be willing to accept that help while tuning out the fear and sometimes the panic that can consume us during highly stressful moments.

On a plane, one must simply reach for the mask that dangles. For caregivers, however, reaching for help is different. Most of the conflicts that caregivers experience involve relationship dynamics. If the patient is bleeding or injured, then it is a medical crisis, and that involves a different set of skills and needs, generally referred to as triage. Caregiving scenarios that strain the bonds of friends, family, and marriage could benefit from emotional triage. Since the one who suffers will, by definition, probably not be providing leadership in those areas, it's up to the caregivers to ensure their own safety and well-being.

Just as paramedics trained to care for an agitated, and sometimes even violent, patient, caregivers can learn to protect their own emotional safety and peace of mind. When the turbulence of caregiving hits, I have found three simple things that help me make healthy and positive decisions in high-stress moments. Wait, water, and walk. Let's talk with this. Wait. Take a moment before responding. Regardless if the culprit is dementia, drugs, or your just loved one behaving badly, let's start with wait. Wait. Take a moment before responding.

Regardless if the culprit is dementia, drugs, or your just loved one behaving badly, let's start with wait. All types of emotional tug-of-wars seem to be happening simultaneously while caregiving. If you pick up the rope and involve yourself in a tug-of-war, one of two things will happen.

You will win and end up on your rear, or you will lose and end up on your face. Don't pick up the rope. Simply wait before responding.

Rarely do you have to apologize or make amends for something you didn't say. Breathe slowly. Inhale four seconds. Exhale eight seconds until you feel yourself growing calmer.

You know, stress and anger are toxic for good decisions, so we've got to breathe a little slower and settle ourselves down. Drink some cool water. It will buy you time to think more clearly. Avoid sugary drinks or even coffee and instead grab a bottle or glass of water. Your body needs water. Your brain needs water.

From high blood pressure to fatigue, water helps a myriad of issues. A tanked-up brain functions better. Drink to think. Walk. Caregiving creates extreme stress, so when things are bouncing off the walls, take a few moments to put on some comfortable shoes and walk off some of that tension. By doing so, you are truly putting on the mask first, getting better oxygen to your body and brain and bleeding off anxiety. Walking immediately helps facilitate calmness. Settling yourself down allows you to bring your A-game to the caregiving scenario. Wait, water, walk. Costs little or nothing, but can instantly help a caregiver make better decisions.

Calm down and feel more at peace. These are the initial steps of the Delta doctrine. Put your mask on first is the most responsible and caring steps in your efforts to help others. In doing so, the patient gets a healthier, confident, stronger, and more self-controlled caregiver who can provide leadership while offering love. 24-7 emergency support, increasing safety, reducing isolation. These things are more important than ever as we deal with the challenges of COVID-19. How about your vulnerable loved ones?

We can't always check on them or be there in ways we'd like. That's why there's Constant Companion, seamlessly weaving technology and personal attention to help push back against the isolation, while addressing the critical safety issues of our vulnerable loved ones and their caregivers. Constant Companion is the solution for families today, staying connected, staying safe. It's smart, easy, and incredibly affordable. Go to www.mycompanion247.com today. That's www.mycompanion247.com. Connection and independence for you and those you care about.

www.mycompanion247.com. From Helen Keller. Face your deficiencies and acknowledge them, but do not let them master you. Let them teach you patience, sweetness, insight. When we do the best we can, we never know what miracles wrought in our life or in the life of another. That's a great quote from Helen Keller. And then listen to this from Ovid. Take rest.

A field that has rested gives a beautiful crop. Chapter 3. A different perspective. And the opening quote for that is from Johnny Erickson Tada, my dear friend.

I just absolutely think the world over. Perspective is everything when you are experiencing the challenges of life. Sometimes it helps to get a different perspective on a situation in order for roles to be better defined. Let's start with a few qualifying questions. Did you create the condition your loved one endures? Can you cure them? Can you control what is happening to them?

If you answered yes to these questions, then maybe this book is not for you. If you can create, cure, or control these type of life issues, then you don't need to worry about being a caregiver. On the other hand, if you answer no to those questions, you are well on your way to understanding your powerlessness and inability to alter or change the circumstances facing you as a caregiver.

And that's a good thing. Although my resume as a caregiver is a long and impressive one, I must confess that not only have I failed to fix the situation, I can't stop it from getting worse. In fact, I don't think I can even slow it down. Mulling over these facts, it dawns upon me that maybe I have a different role to play in this scenario. If controlling it or curing it is impossible, then what is my job as a caregiver? After decades of putting on the cape and mask and acting like a superhero every time a medical crisis pops up, often daily, I'm learning that my role is to love my wife, do the best I can, and grow as a healthy individual to the best of my abilities. As capable as I am, it is abundantly clear that I am powerless over her injuries and equally powerless to take away any of her considerable pain.

I do, however, have an important role to play, but can only serve in that role if I am thinking and living in a healthy manner. When I first started out on this journey, I put my life on hold to help her improve her life. After doing this for some time, it dawned upon me that I could not wait for her to get better or worse before I took steps to live a healthy life. And right here, I inserted a quote from Don Diego to Alejandro in The Mask of Zorro, which I love this quote.

He says, Oh, yes, my friend, you would have fought very bravely and died very quickly. That's why we are as caregivers. When in the hospital dealing with a medical crisis, the normal response is to stop everything and throw ourselves recklessly at the issue. When the problems drag on for months, years and decades, a plan must be implemented to help the caregiver build a healthy life. That night in the hospital so long ago, I wouldn't have been able to process a how-to manual that required even more of the precious resources that I spend every day. I needed something simple, attainable, practical, and able to do right now.

But what does that even look like? Well, it looks like implementing easy to accomplish consistent steps to address the six major help me impact areas affected by caregiving. When I say help me, listen what it spells out. Health, emotions, lifestyle, profession, money and endurance.

Help me. Focusing on the health of the caregiver is not selfish or self-centered. In fact, it is the opposite. By not seeking a healthy life of my own physically, fiscally, and mentally, I risk greater harm to the one I love. As her sole support system, her well-being is jeopardized if I make unhealthy choices. If your own life is a ticking time bomb waiting to cause massive damage to the one you love, it kind of makes it hard to wear the label caregiver, doesn't it? My perspective required changing.

Healthy caregivers make better caregivers. And the quote at the end of that chapter is from Andy Rooney. Go to bed. Whatever you're staying up for, is it worth it?

Go to bed. And then I start off each new chapter with more quotes. And I put a lot of these in there because it just kind of helps us think about things different. This is from Charles Spurgeon. They call him the Prince of Preachers. No life can surpass that of a man who quietly continues to serve God in the place where providence has placed him. And then this is from S.S. Cruz.

Find out where you can render a service, then render it. The rest is up to the Lord. And then from Barbara Bush. Some people give time. Some people give money. Some their skills and connections. Some literally give their life's blood.

But everyone has something to give. Chapter four, your decision to serve. The greatest among you will be your servant.

Matthew 23 11. So you decided to be a caregiver. There I've said it. You decided to be a caregiver. You're probably thinking, Peter, you don't understand. I didn't decide to take this job. It was forced upon me.

Well, if that's what you're thinking, I respectfully disagree. Since you're reading this book, I'm pretty sure you've decided not to run away, at least not quite yet. And you still consider yourself to be a giver of care. You've made the decision to participate and stay in the marathon called caregiving. So that indicates something special about you.

Here's why. According to the greatest and most often quoted source in human history, the carpenter from Nazareth. You are among a group he calls the greatest of these. According to Jesus, you're not middle of the pack. You're not bringing up the rear because of your decision to serve. He maintains that you have reached the pinnacle of earthly success.

And if he believes it, who are you to say otherwise? Are you feeling a little isolated or fearful or decidedly unsuccessful? Well, those feelings are totally understandable because you live in a world that glorifies power, prestige, fame and money. In this world, awards go to CEOs, movie stars, professional athletes and supermodels, rarely caregivers who volunteer to care for a suffering human being for months, years and even decades. But the words of Jesus teach us that the most esteemed men and women on this planet are not the widely recognized faces we see on magazine covers. The greatest among us are those who serve, and that includes you.

Listen to what Martin Luther King said. Everybody can be great because anybody can serve. That's a great quote. When the unrelenting demands of caregiving leave you gasping for air, you may not feel like a rip-roaring success. In fact, when the bills pile high and the paperwork piles higher, you may believe, quite wrongly, that genuine success is out of your reach. When those feelings wash over you, I refer you to a higher authority who has already awarded you with life's greatest merit badge, because you've decided to stay, to serve and to care.

You're esteemed by God himself. Hope deferred makes the heart sick. Proverbs 13, 12. Paul Valeri, we hope vaguely, but dread precisely. Steve Jobs said, You can't connect the dots looking forward.

You can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. And I love this from Romans 5, 2 through 7. And we rejoice in the hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance and endurance produces character and character produces hope. And hope does not put us to shame because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Chapter 5, Hope for the Caregiver. They overcame by the blood of the Lamb and the word of their testimony.

Revelation 12, 11. Every day I encounter caregivers who are struggling to keep their heads and their hearts above water. Oftentimes these men and women have made heroic sacrifices for their loved ones, yet they still feel a vague sense of guilt. Sometimes they feel afraid, grief stricken or anxious, or perhaps they feel nothing at all.

They just feel numb. While each journey is unique, the constant grind leads many to share the common feeling of hopelessness. Not only disheartening for the caregiver, that feeling also bleeds over to well-meaning people who try to console, but sadly miss the mark. Over the years, others have tried to offer consolation to Gracie and me when they see the challenges we live with. I hate what you have to go through, but look at the testimony is often repeated to us. Another one is, your burdens are great, but look what God has done through you all through your standing with hope ministry.

Your standing with hope is the prosthetic limb ministry that Gracie launched after giving up her legs. Further still, we've often heard what I call the consolation of speculation. God clearly has a plan and a purpose for all this, or you wouldn't be here. Well, that doesn't really make much sense.

Thank you very much for sharing that. I love this quote though from Edward Mott, and it's from a hymn. My hope is built on nothing less than Jesus' blood and righteousness. You know, I appreciate the sentiment behind all those statements that people say to us, but they are just that. Sentiment and sentiment is not hope. Go back to that quote from the hymn. My hope is built on nothing less than Jesus' blood and righteousness. A great testimony and an even powerful ministry to Gracie's fellow amputees is not consolation prize for the harshness of our lives.

As wonderful as our work is in West Africa, that is not what strengthens our heart during brutal times. I mean, think about that. If Gracie's having a seizure, what am I going to say?

Well, Gracie, I know you're having a seizure. I know you're just screaming in pain right now for something else, or I know you're whatever. But, you know, you're helping amputees walk in Africa. That's a real noble thing, but it doesn't offer any comfort into that. No, our consolation has to be greater than simply doing good works and even having a great message.

The challenges of this world are crushing and will bust you up and beat you down. We've all seen too many individuals experience harsh events, and then they all too quickly promote a testimony of their journey, and then fall apart under the hot lights of fame and exposure. The testimony alone can't sustain, and it doesn't offer long-term hope. It seems too many mix testimony with inspirational message.

According to Revelations 12-11, they overcame by the blood of the Lamb and the word of their testimony. Our testimony is bearing witness to the work and its author. That's why telling those who struggle that they have a great testimony is missing the mark. Pointing to the author rather than the testimony offers tangible hope. When your wife is seizing, going into respiratory rest, screaming in agony, or listlessly looking off and living in a place where she can't be reached, no ministry or testimony provides consolation in those moments.

What I hang my hat on is far greater than those things, and that's what helps me push back against the hopelessness. Standing alone in hospital quarters, raging at my powerlessness, watching Gracie grimacing in pain, daily checking to see if she's breathing, or hanging my head in weariness, I depend upon a greater source of hope and consolation than what my mind, and the mind of others, can fully comprehend. Well, that's it for this special bonus material of the podcast. Some sample chapters of my book, Hope for the Caregiver. Please tune in for a great message from John Butler and Gracie and me. This is John Butler, and I produce Hope for the Caregiver with Peter Rosenberger. Some of you know the remarkable story of Peter's wife, Gracie. And recently, Peter talked to Gracie about all the wonderful things that have emerged from her difficult journey. Take a listen. Gracie, when you envisioned doing a prosthetic limb outreach, did you ever think that inmates would help you do that?

Not in a million years. You go to the facility run by CoreCivic, and you see the faces of these inmates that are working on prosthetic limbs that you have helped collect from all over the country, that you put out the plea for, and they're disassembling. You see all these legs, like what you have, your own prosthetic legs. And arms.

And arms. When you see all this, what does that do to you? It makes me cry, because I see the smiles on their faces, and I know what it is to be locked someplace where you can't get out without somebody else allowing you to get out.

Of course, being in the hospital so much and so long. And so, these men are so glad that they get to be doing, as one band said, something good finally with my hands. Did you know before you became an amputee that parts of prosthetic limbs could be recycled? No, I had no idea.

I thought of peg leg, I thought of wooden legs, I never thought of titanium and carbon legs and flex feet and sea legs and all that. I never thought about that. As you watch these inmates participate in something like this, knowing that they're helping other people now walk, they're providing the means for these supplies to get over there, what does that do to you, just on a heart level? I wish I could explain to the world what I see in there. And I wish that I could be able to go and say, this guy right here, he needs to go to Africa with us. I never not feel that way.

Every time, you know, you always make me have to leave, I don't want to leave them. I feel like I'm at home with them and I feel like that we have a common bond that I would have never expected that only God could put together. Now that you've had an experience with it, what do you think of the faith-based programs that CoreCivic offers? I think they're just absolutely awesome. And I think every prison out there should have faith-based programs like this because the return rate of the men that are involved in this particular faith-based program and the other ones like it, but I know about this one, is just an amazingly low rate compared to those who don't have them. And I think that that says so much.

That doesn't have anything to do with me. It just has something to do with God using somebody broken to help other broken people. If people want to donate a used prosthetic limbs, whether from a loved one who passed away or, you know, somebody who outgrew them, you've donated some of your own for them to do. How do they do that? Where do they find it? Oh, please go to standingwithhope.com slash recycle. Standingwithhope.com slash recycle. Thanks, Gracie.