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Product Details
| ISBN-13: | 9781617957505 |
|---|---|
| Publisher: | Worthy Publishing |
| Publication date: | 10/15/2015 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 224 |
| File size: | 1 MB |
About the Author
Read an Excerpt
Hope for the Caregiver
Encouraging Words to Strengthen Your Spirit
By Peter Rosenberger
Worthy Publishing Group
Copyright © 2014 Peter RosenbergerAll rights reserved.
ISBN: 978-1-61795-750-5
CHAPTER 1
SHOCK AND AWE
When I am afraid, I will trust in You.
Psalm 56:3 HCSB
As caregivers, we sometimes experience "flash-bulb moments" so shocking that the memory is seared into our brains for a lifetime. One of mine came at St. Thomas Hospital more than twenty-five years ago — at 3:00 a.m.
Memories intensify with the 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 stench 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's intercom system, I sat halfway down the dimly lit ward with my back against the wall and scanned over charts, lab reports, and doctors' 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 seventeen, 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.
"Peter, she's wonderful, but you need to know that she had a serious car accident 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 a 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. Poring 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 4 of 4." Before converting most of her records electronically years 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 loved 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 twenty-six-year-old man.
A difficult place for a fifty-two-year-old man.
* * *
To date, Gracie's journey includes at least seventy-eight operations (that I can count), multiple amputations (not just both legs, but multiple revisions on both legs), treatment by more than sixty physicians in a dozen hospitals, seven different insurance companies, and medical costs cresting nine million dollars.
As her sole caregiver for nearly thirty years, I often recall that shock-and-awe moment in that 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?"
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 healthcare system. Through marriage to someone with extreme pain, disability, and chronic crises, 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, but 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 principal), I somehow keep the plates spinning. When it comes to "wanna-be" stand-up comedians who play the piano and take care of a disabled wife for decades, I'm 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.
Blessed are the flexible for they shall not be bent out of shape
Anonymous
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?
If you're gasping for air, you can't help other people.
Sandra Rankin
* * *
I have come to believe that caring for myself is not an act of indulgence. It is an act of survival.
Audre Lorde
* * *
But the Lord is faithful; he will strengthen you and guard you from the evil one.
2 Thessalonians 3:3 NLT
CHAPTER 2THE DELTA DOCTRINE
It don't take too much I.Q. To see what you're doin' to me You better think.
Aretha Franklin and Ted White
One day, while flying to Atlanta on Delta Airlines, (Duh, Everything Leaves Through Atlanta), I discovered that flight attendants state the best advice for caregivers — all day long:
"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."
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 trying to help someone else breathe. But once we make that decision, it is only a matter of time before we find ourselves gasping for air. And, if we are 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 the 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 is up to caregivers to ensure their own safety and well-being. Just as paramedics train 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've found three simple things that help me make healthy and positive decisions in high-stress moments: Wait, Water, and Walk.
Wait: Take a moment before responding. Regardless if the culprit is dementia, drugs, or just your loved one behavingbadly, 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. Stress and anger are toxic for good decisions.
Water: 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 offanxiety. Walking immediately helps facilitate calmness. Settling yourself down allows you to bring your "A-Game" to the caregiving scenario.
Wait, Water, Walk cost 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 step 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.
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 miracle is wrought in our life, or in the life of another.
Helen Keller
* * *
Take rest.
A field that has rested gives a beautiful crop.
Ovid
CHAPTER 3A DIFFERENT PERSPECTIVE
Perspective is everything when you are experiencing the challenges of life.
Joni Eareckson Tada
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 types of life issues, then you don't need to worry about being a caregiver.
On the other hand, if you answered "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 résumé 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 can't 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 on this journey, I put my life on hold to help her life improve. 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.
"Oh yes, my friend, you would have fought very bravely, and died very quickly."
Don Diego to Alejandro, The Mask of Zorro
* * *
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 I spent every day. I neededsomething simple, attainable, practical, and able to do "right now."
What does that look like?
It looks like implementing easy-to-accomplish consistent steps to address the six major "HELP ME" impact areas affected by caregiving:
Health
Emotions
Lifestyle
Profession
Money
Endurance
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 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.
* * *
Go to bed. Whatever you're staying up for isn't worth it.
Andy Rooney
* * *
No life can surpass that of a man who quietly continues to serve God in the place where providence has placed him.
C. H. Spurgeon
* * *
Find out where you can render a service; then render it. The rest is up to the Lord.
S. S. Kresge
* * *
Some people give time, some give money, some their skills and connections, some literally give their life's blood. But everyone has something to give.
Barbara Bush
CHAPTER 4YOUR DECISION TO SERVE
"The greatest among you will be your servant."
Matthew 23:11 HCSB
So you've decided to be a caregiver. There, I said it. You've 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, and 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, and 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.
(Continues...)
Excerpted from Hope for the Caregiver by Peter Rosenberger. Copyright © 2014 Peter Rosenberger. Excerpted by permission of Worthy Publishing Group.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Foreword,Introduction,
The Caregiver's Prayer,
Part I: Head,
1. Shock and Awe,
2. The Delta Doctrine,
3. A Different Perspective,
4. Your Decision to Serve,
5. Hope for the Caregiver,
6. Don't Believe Everything You Think,
7. Obligation is a Petri Dish for Resentment,
8. Progress Not Perfection,
9. What to Do About the Things That Can't Be Changed,
10. Realistic Expectations,
11. We're as Miserable or as Happy as We Make Ourselves,
Part II: Emotions,
12. Navigating Through the Emotional Fog,
13. See the Heart, Not the Chart,
14. The Hardest Job,
15. Beyond Guilt,
16. Fear Is a Four-Letter Word,
17. Isolation,
18. Loss of Identity,
Part III: Lifestyle,
19. Sustainability,
20. Diet,
21. Counseling Helps,
22. You're Not Alone: Finding a Support Group,
23. Church: You Owe It to Yourself,
24. Why Do Faith Healers Wear Glasses?,
25. Thy Word Is a Lamp unto My Feet,
26. Laugh When You Can,
27. You Are Now Free to Get Up and Move Around ...,
28. Leave,
29. Separate the Person from the Pain,
30. When Emotions Turn Self-Destructive,
31. Keep Living, Even While Hurting,
Part IV: Planning,
32. Crisis Management Is an Oxymoron,
33. Caregiving, One Day at a Time,
34. Making Time for Quiet Time,
35. Adding Money Challenges to the Mix,
36. About Insurance, Doctors, and the System,
37. Your Other Career,
38. Unilateral Decisions,
39. They're Going to Fall,
40. The Serenity Prayer,
Tips for Caregivers,