The Caregiver's Guidebook

Your Resource for Successfully Navigating Your Life as a Caregiver

Barbara A. Stewart

• Publisher: IMB Press
• Year: 2019
• ISBN:
  9781733903110
• Topic: Medicine
• Subtopic: Health Care Delivery

• The Caregiver’s Guidebook is your personal resource for successfully navigating life as a Caregiver.It is filled with information, lists, and a place for you to personalize your journey.It willprovide you with awareness, encouragement, comfort, and a voice, as you embrace the new you!

When you suddenly and unexpectedly become a Caregiver, your life as you know it changes dramatically.You may feel like you are on auto pilot as you become overwhelmed, not knowing what to do or what to expect.You will be faced with tasks and decision making that you did not expect or think about.People will offerto help you and you won’t know how to respond.The Caregiver’s Guidebook will help you:

• Sort through the confusion
• Understand and better manage logistics in the healthcare industry
• Provide tools for communication
• Access tips and use lists to take care of yourself - the Caregiver

Plan B.

Always a Plan B.

Just in Case.

CHAPTER ONE

Do I Bring the Red Shoes

I always like to have a Plan B. Most successful people have a Plan B. The surgeons at the hospital said they always have a Plan B. My quest was figuring out whether bringing my red shoes fit into my Plan A or my Plan B.

Once we had a date set for the transplant surgery, I figured we had plenty of time to prepare for our two-weeks stay. About three months prior to our planned day, I received a phone call from the hospital. They asked how soon we could be there as they had a possible cadaver liver donor for my husband. Mind racing and nerves churning, I arrived promptly to pick up my husband for our long trip to the hospital. Thanks to my amazing friend, we had two suitcases packed containing a change of clothes, pajamas, toothbrushes, a book, and even a candy bar. I must admit that I kept wondering if she had included my red shoes. My passion for shoes seemed to outweigh our focus on the essentials. This experience set the stage for getting serious about my Plan A and Plan B approach.

Each of our many trips to the hospital were different. Occasionally we would have time to pack like we were going on a well-planned vacation, yet other times we arrived with only our cell phones and the clothes on our back. Certainly, there had to be a balance. I have since created a packing list that works for me. The list “What to Bring/Do” is posted at home, included in my cell phone, and written in my journal. I hope this list brings your awareness to the forefront and inspires you to create your own list and always have it handy.

We still have occasions when it is midnight and we are contemplating a trip to the Emergency Room, not knowing if we will be staying overnight or staying for a week. My checklist helps. I have a bag with some items ready to go. I also have an empty bag ready to fill. A side note here is that a backpack is a great go-to bag in case you need to push a wheel chair or for when you have your arms full of your belongings. My packing list eliminates time, stress and worry.

Some of the items from your list can be kept in the trunk of your car ahead of time such as blankets and pillows. Keep in mind that extreme weather can affect the condition of certain items such as makeup or toiletries. The items you forget or cannot bring will now be on a checklist for when you find a place to purchase them, or you can have someone bring them from home.

Just for the record, when I did have the extra time to pack, I always brought the red shoes!

Please make the What to Bring/Do list your own, adding items as you think of them. When you have time, prioritize this list into categories. Use a highlighter for the items that you must grab if you only have 5 minutes or less. In my own experiences, my urgent list included: Cell Phone, Charger, Wallet, Water Bottle and a Sweater or Blanket. It is hard to believe, but everything else can be obtained later. It is helpful to always carry around an updated list of medications, and have one posted at home.

The second part of your list is for when you can plan your trip or have more than five minutes. It is wise to have a bag packed with as much of these items as you can, most often possible by purchasing duplicates. I found it helpful to have a bag designated to my clean-up time. It included all my bathroom supplies as well as room for my basic change of clothes. It also contained a waterproof bag for soiled clothes or wet rags/towels. You can launder these items when you arrive at your hotel or pass them on to a person from your “I need help” list. If weather inhibits you from keeping items in the car and you feel you may not get a chance to go home to retrieve your packed bag, then at least keep items like travel blankets, pillows, change of clothes or shoes, extra jacket, and a tote bag. Remember to leave a house key with a neighbor or family member. Again, you can obtain anything you forget, somewhere, somehow. Most importantly, remember to bring your copy of The Caregiver’s Guidebook.

What to Bring/Do

•Cell phone, charger

•Wallet, credit cards, cash

•List of patient’s medications: name/strength/frequency

•Sweater or sweatshirt

•Blankets (for yourself and a favorite for the patient!)

•Snacks and water bottle

•One or two pillows

•Journal and calendar

•Extra shoes

•Medications and pain relievers for yourself

•Outerwear for daily commutes including umbrella

•Bathroom supplies (listing items separately is recommended!)

•Rag/small towel/wet wipes

•Change of clothes, undergarments for both of you

•Robe, slippers, pajama bottoms for the patient

•A small mirror for the patient’s use

•Books/magazines

•Music on phone with earbuds for you and the patient

•Nightlight/flashlight

•Change for vending machine and laundry

•List of contacts (unless you know they are in your phone)

•Home lights on, or on a timer

•Extra key for neighbor

•List of tasks for neighbor to handle while you are gone

•List of bills to pay

•Gas tank full

•Doctors names and numbers

•Quick activated (instant) heat or cold packs

•Box of paperwork or magazines to sort as time allows

•The Caregiver’s Guidebook!

•Red Shoes

NOTES:

Doctors Diagnose.

Nurses Heal.

Caregivers Make Sense Of It All.

CHAPTER TWO

Can You See Me

Caregivers are Invisible. It is getting better as we create a voice and our needs and concerns move to the forefront. In most hospital settings, especially in any special care unit, the focus is on the patient, and rightfully so. The attention to the Caregiver, however, is crucial because the Caregiver is the middleman that has most of the information available and documented, makes most of the decisions, and is often the key component in the outcome of the patient’s care. This invisible status may also be apparent during physician office visits.

My opinions and experiences have resulted in me becoming more assertive yet still polite and respectful of the process. The Caregiver is there to document everything and to be an advocate for the patient’s wellbeing. Even though the physicians most often converse directly with the patient, the Caregiver must find a way to document and clarify information about the patient’s care and plan of action. Use your journal as a place to document information as it is presented and write down your questions and keep them concise. Most importantly, make sure you understand the information and answers you are given, or ask again.

Doctors: Do not hesitate to ask them to explain something, repeat, or spell anything that you do not understand. The doctor usually gives you a synopsis of the situation then will ask if you have any questions. (My husband’s only question was to ask if he could have a room with a view!) The Caregiver must write down any questions or concerns as you will sometimes come up with them later or when you step out for that cup of coffee and miss the doctor’s visit. You can always tell your nurse that you have a question for the doctor. Nurses are a great resource. They will connect you to the right person if they cannot help.

Nurses: Your nurse is the key player in your health care experience. They are dedicated to getting to know the patient and their family and taking care of every need, especially in a special care unit. They interact with the doctors, the pharmacy, transport, housekeeping, social workers and anyone else involved in patient care. As Caregiver, you can be of ...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Introduction
• My Story
• What is a Caregiver
• Chapter One: Do I Bring the Red Shoes
• Chapter Two: Can You See Me
• Chapter Three: Dear Diary
• Chapter Four: Am I Going Up or Down
• Chapter Five: Complete the Circle
• Chapter Six: Enjoy Your Life
• Glossary
• Lists
• Conclusion
• About the Author
• Acknowledgments