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"In the book "Walking on Eggshells," Amy Sales provides a great service, not only for the patients and their families, but for health care providers as well. There are so many issues surrounding life-threatening diseases and surrounding the process of dying that simply are not thought about ahead of time, creating undue anguish. This book provides the preparation and knowledge needed to weather the emotional storm of grief associated with medical conditions. I highly recommend it."
Benjamin Carson, Sr., MD, Johns Hopkins Hospital
"Caregivers are ordinary people who find themselves in anything but ordinary circumstances. A loved one receives a terminal diagnosis and we're launched into caregiver status without a road map. Amy Sales passion and expertise in clinical social work and grief counseling has changed all that with "Walking on Eggshells." She'll walk WITH you while offering great advice and sensible suggestions through each step of this difficult journey. Because it's as close as it comes to "Walking on Eggshells."
Laurie Singer, award winning network television news producer,
long-time caregiver and best friend to her late husband, Leroy Sievers.
"Wonderful, it made me feel like I was normal, like we could beat this. I felt like I wasn't in a black hole anymore. I didn't feel like I was crazy anymore."
Tina Steffey, caregiver.
Product Details
| ISBN-13: | 9781452091686 |
|---|---|
| Publisher: | AuthorHouse |
| Publication date: | 10/14/2010 |
| Pages: | 152 |
| Product dimensions: | 0.35(w) x 8.00(h) x 5.00(d) |
Read an Excerpt
Walking on Eggshells
A Caregiver's Guide to Practical, Real Life Direction on What to Say and Do When a Loved One Has a Life-Limiting IllnessBy Amy Sales
AuthorHouse
Copyright © 2010 Amy Sales, MSW, LCSW-CAll right reserved.
ISBN: 978-1-4520-9168-6
Chapter One
Cat Got Your Tongue? When Finding the Right Words to Offer Support Feels Impossible
Have you ever spent five minutes looking through the refrigerator for something, only to discover that it was right there in front of you the entire time? Oh come on, we have all done it. We then smack ourselves on the head and wonder, "how blind could we be to have missed what was directly in front of us?"
People often tell me, "I wanted to call because I heard he was sick, but I didn't because I was scared that I wouldn't know what to say or that I would put my foot in my mouth." Under these circumstances, it is normal to be at a loss for words but I want to point out to you that the words are on "that shelf" directly in front of you.
Below is a typical example of what to say (whether it's in person, on the phone, left on an answering machine, or written in a card):
"I am so sorry to hear that you are sick. I wish that I knew the right words to make it better, but I don't. I want for you to know that I am here for you and will continue to keep you in my thoughts and heart. I don't want you to feel compelled to talk if you don't want to, so I won't keep you. But should you need anything or just want to talk, please know that you can call any time."
In the above example, you are simply letting that person know that you are aware, concerned, and available. Furthermore, you are providing him space by not "pushing" and at the same time offering assurance that you will continue to be there should you be needed.
Many caregivers make the mistake of suggesting that everything will be okay. Our hurt and pain make it easy to grasp at straws and to say things such as: "You will fight this and be cured." While I understand the power of positive thinking, it may be of no help to the person who is sick, and in fact, it may not even be realistic.
Imagine for a few moments what you might feel like if you were just told by a doctor that you have a life threatening disease. Come on, I mean really try to place yourself in those shoes. What is your first emotion? I would venture to guess that sheer panic comes to mind. Another common reaction is shock and disbelief.
If you have children, you have probably experienced what I call the "panic mode" at least once. For instance:
You are out in public with your child and turn your head for less than a second. When you turn back around, you do not see your child. Your heart races, your tunnel vision is acutely searching/scanning, you cannot hear the noises around you that were there only a moment ago, and you're already experiencing that your child is lost.
Hopefully, you spot your precious junior who wondered off, and you can feel all of the blood and oxygen re-enter your body. But what if you had to continue to live and function in that state of fright. That's how a person feels when told of a life-threatening diagnosis. Can you identify with him or her better now?
This brings me back to knowing what to say to your loved one. If you attempt to identify with his feelings, the words will be easier to find. It will also sound genuine and sincere.
Example
* I am sorry that you are sick. * I feel really bad. * If you need anything I am here. * We are going to do this together. I do not want you to feel alone. * I don't want to push if you do not feel like talking. Would you rather that I give you some space? * What can I do to help you? * You must be experiencing so many emotions. I am happy to listen if you want to share. * I am not sure what to say, but wanted to tell you that I am thinking about you and carry you with me in my heart. I recognize that there are many people who will still have a difficult time reaching out, despite their strong urge to do so. Buy a card and simply write "I am thinking about you." You may view it as a simple gesture, but I assure you that the person who receives it will think it's priceless.
A final thought. It is my impression that many people shy away from offering support because they are afraid that there will be a period of awkward silence. Allow me to provide you with some words of wisdom on this one: The power of presence is more powerful than you could ever imagine. Sometimes, actually oftentimes, no words are needed at all to convey that you care and share others pain.
Chapter Two
Life After The Diagnosis
Life, as you and your family knew it prior to receiving this diagnosis, will not be the same. Your first role as the caregiver and support system is to be aware that your loved one will experience a range of emotions. You may, at times, find that your own feelings will go in tandem with your loved one. While at others, you may be in very different places.
I will focus on the person who is sick at the moment (referred to throughout this book, for simplicity, in masculine terms) and address the caregiver (referred to in feminine terms, although I fully recognize that these roles may be reversed) in a later chapter (you deserve your own chapter). Your job is to be tuned into his emotions and to recognize when to throw the life preserver out and pull him into safety. From here on out: expect the un-expected.
Nobody ever knows how he or she will respond when given a life threatening diagnosis. Let me share with you my experience of some typical feelings and reactions:
* It is common to feel shock and disbelief. * This can't be right. * I must be in a bad dream.
* No, this is not happening to me.
The majority of people assume their diagnosis means instant death. It is not until they get to meet with their physician and hear treatment options with a clear plan of action that they can take a deep breath and feel a sense of hope.
When I meet with patients, I explain to them that they are on the roller coaster of their life. There will be highs, lows, and in-betweens. The ride may change from minute to minute and is not predictable, but I assure them, just as you will, that they will not be on the ride alone.
Patients and their caregivers share a common condition from the minute the diagnosis is provided: Immense loss of control. I cannot think of a greater feeling of loss of control for both parties. Patients would do anything to protect their loved ones from having to imagine a world without them, and caregivers would do anything to make their loved ones well.
Remember this book is for you, the caregiver, not the patient. With that reminder I will help you re-focus your feelings of helplessness into simple, yet powerful actions which will help your loved one maintain control. Throughout this journey I encourage you to ask yourself, "What can I do to give him a sense of more control?" There is always something right in front of you (think back to my analogy about the refrigerator).
We as human beings do one thing extremely well. Many of us are control freaks. The ultimate feeling of loss of control must be when we are faced with our own mortality. Imagine the anxiety that your loved one must be experiencing at this time. It is important that you understand that many patients lose their sense of identity while fighting for their lives. Many are not able to work, provide for their families, take care of their loved ones or perform their daily routines independently. Talk about loss of control.
My experience has taught me to allow people who are sick to have as much control as possible. It may be as simple as giving them what they want to eat, or as complicated as wanting a second, third or fourth opinion. Your loved one must be able to make choices that fit his needs. I should explain that I am referring to patients who are of sound mind, who have good judgment and who are not placing themselves into an unsafe situation.
You may not always agree with the choices that your loved one will make. I would hope that your relationship provides opportunities to discuss things "as a team." But, if he is safe to make choices, whether you agree or not, try to keep in mind that this is someone who is very much trying to regain some sense of control. The role of the caregiver will often be to support the wishes and needs of someone who is doing everything possible to maintain "normal," when everything is anything but normal.
Chapter Three
How to Prepare for Medical Appointments
When things are out of sync in our lives, it becomes difficult to manage our everyday routine, let alone understand and organize what is said and recommended by a physician.
Prepare to take on the role of advocate, team leader, interpreter, gate-keeper, counselor, cheerleader, boxing bag and hugger. Are you feeling overwhelmed yet? If the answer is yes, let me assure you that you are normal. Physicians often talk fast and in medical terms. It is hard enough trying to interpret what they are saying, let alone to keep track of the information.
This is where it is vital that the caregiver come equipped with two good ears, a notebook, pen, and the ability to ask questions. There is no such thing as a dumb question. Nor, is there ever a limit to how many you can ask. You are not trying to understand something simple, rather you are talking about and seeking information that is vital to your loved one's health and well-being.
I want to share a secret with you: "that white coat that the physician is wearing is simply that: A WHITE COAT." Do not get me wrong, I have nothing but admiration and respect for physicians, but too often patients and their caregivers are intimidated by the white coat.
Many assume that what the doctor has to say is flawless and is not to be questioned. I now give you permission to think like a teenager and to "question authority" when something in your gut doesn't feel right.
Ask the doctor for written material about the treatment being offered, possible side effects, and if you want to know what the success rate has been, it is okay to ask. They will provide you with this information. Some people choose not to ask, and that is okay too.
It is very common that whatever is said in the doctor's office will go in one ear and out the other. Obtaining facts and a plan can be overwhelming and scary. This is where that pen and paper come in handy.
I recommend that you purchase a big notebook, date every interaction and write down what is being said. Before you leave the appointment ask when the next visit will be (write it down) as well as, what is the best way to reach the doctor or his nurse should you have more questions. Both of you should review what is in the notebook after you get home.
Make dividers in your notebook for: medication, contacts, phone numbers, and dates. You will be inundated with a lot to remember. Staying organized will keep life much easier.
I strongly encourage you not to rush home and get on the internet to read about the diagnosis and treatment. Information may not apply to your situation and may create unnecessary confusion and fear. You will most likely ignore my suggestion, but take it from me that too many people obtain inaccurate information from the internet that equates to doom and gloom.
Chapter Four
"Who To Tell What" and "When To Tell It"
When is the right time to tell others that your loved one is sick? Depending on to whom you talk, the answer will differ based on personalities and their preferences. I have met many individuals who share their diagnosis with everyone, others who do not tell anyone. I will not recommend whether or not to share your personal situation, but I will provide you with information that may help you to make your choice. Furthermore, I will give you suggestions to help you and your loved one cope with these decisions.
I am a firm believer that there are no "should or should nots." In other words, many people do what they think that they should and compromise their true desires. This can lead to resentment. Example: "I should call my friends and tell them I am sick, because they will be hurt if I do not."
I am giving you permission to put your needs first! Share information when the time feels right. Your desire to inform or update people will shift over time. Good news is easy to deliver; bad news can be more difficult.
There is one exception to whether or not to share. If you have children, I strongly encourage you share information without delay. This deserves its own chapter, which will follow this one. For now, let's focus on whether or not to share information with friends, family or employers.
Employers and Colleagues
I think that it is important to provide some information to the employer. There are several reasons for this. First, people miss work days due to treatment and side effects. The amount of time off will differ from person to person depending on what type of illness he has.
If you, the caregiver, are employed, the above applies to you as well. Your life will not be predictable and you need the support of your employer. Many employers show compassion and understanding when they are notified. They may respond by saying, "I completely understand, take whatever time you need." Nonetheless, a person's job may still be at risk. Reality is reality. The work still has to get done. Ask your employer whether or not this is something that you need to be worried about. Determine the perimeters of how much time you may take off.
I suggest that you share my recommendations with your loved one because you both need to seek out this information. Neither of you can plan and make choices without guidelines. I seldom "push," but this is a topic which I will be very PUSHY. You both may be nervous or hesitant to ask these questions of your employer, but it is necessary to do. Finances are on the top of the list when it comes to worries during illness. I am now yelling at you (in a kind voice I may add) to find out what your options are soon!!!
After you obtain information, you will be able to better organize. If you have a strong external support system, you may need others to take turns accompanying your loved one to appointments, or watching your kids, so you can go to work. I will address benefits through employers in a later chapter. Right now, I am focused on helping you navigate through "who to tell," and why some people are more important than others when it comes to your well being.
Friends
Let's move on with whether or not you want to tell friends. I want to share something with you: The secret is that there is no secret at all. Meaning once you tell one friend whether you like it or not, the news will spread. This is what we humans do. It is just too difficult to expect people to keep this kind of information to themselves. I have found that this type of news doesn't get passed on as a form of gossip, but rather, out of concern. Go gently on your best friend who swore on her mother's grave that she would not share. In this case, make it easier for your friends and explain that you'd rather that they keep it to themselves for now, but that you understand if they need to share.
Here is my philosophy on this topic, and again, each person's needs are different, so follow your gut and heart. I recommend that you tell people (friends, family, important colleagues) for several reasons:
* Keeping secrets can be a source of stress and take up energy. * The support that these people can provide may be extremely helpful. * It is important that you know that you are not alone on this journey.
I would like to explain the common reasons which prevent many of us from sharing information. If you ask individuals whether or not they feel more comfortable giving or receiving from others, the majority will answer giving. It is human nature to give instead of receive (I know, everyone knows someone who is the exception, but for the sake of keeping the human spirit alive, let's keep them out of this chapter, shall we?).
(Continues...)
Excerpted from Walking on Eggshells by Amy Sales Copyright © 2010 by Amy Sales, MSW, LCSW-C. Excerpted by permission of AuthorHouse. 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
Introduction....................ixChapter 1. Cat Got Your Tongue? When Finding the Right Words to Offer Support Feels Impossible....................1
Chapter 2. Life After The Diagnosis....................7
Chapter 3. How to Prepare for Medical Appointments....................13
Chapter 4. "Who To Tell What" and "When To Tell It"....................17
Chapter 5. Talking to Your Children....................27
Chapter 6. Should Children Go to Funerals?....................47
Chapter 7. Taking Care Of Yourself....................55
Chapter 8. Finances....................61
Chapter 9. Hope; It Will Have Different Stages and Phases Throughout Your Journey....................69
Chapter 10. Preparing for Hospitalizations....................77
Chapter 11. Breaking Bad News....................85
Chapter 12. Preparing for End of Life....................97
Chapter 13. What is Hospice, and How Do We Talk About It?....................103
Chapter 14. Understanding the Physical and Emotional Needs of Your Loved One....................113
Chapter 15. What Does Death Look Like?....................119
Chapter 16. Picking Up The Pieces After Your Loved One Dies....................125
Chapter 17. Re-Entry....................133
Appendix....................137
Acknowledgments....................139