the crazy one felt a little less crazy.
Time has passed. Our lives changed forever. And yes, we each found normal again - a new normal - a new balance - a richer life as “caregiver” was etched into a facet of our personalities. Oh how we wish we’d had this book to assist us with the journeys that none of us really understood at the time. The insights in Normal Doesn’t Live Here Anymore would have made our individual experiences less confusing and overwhelming.
Brew a pot of tea, curl up in your favorite chair and embrace the words that come from years of one caregiver’s experience. Barb allows you to walk with her—step by step—through her caregiving journey as she weaves her story along with her hindsight, questions you need to ask, information you will need, and the emphatic necessity for Me Time.
Someone once said, “Friends are the family we would have chosen for ourselves.” We hope you will follow our example and create your own special family. Wholeheartedly we can say, “You need your friends!” There is a bond that connects caregivers everywhere. As you read this book we’re sure that you will feel that circle expand to include you. Starting right now, we embrace you. Welcome to the circle!
As friends who have “been there and done it” we salute you. We honor you. We wish you clarity and peace on your journey.
Now, grab that cup of tea and a few minutes, take a few deep breaths and join Barb on a journey of love, compassion, sorrow, and encouragement.
— With love, The Soul-Sisters
…
Preface
The world as I knew it had collapsed into chaos, leaving my emotions in a tangled mess. Wandering without clarity from one day to the next, I picked up a pen and began writing. It was a way of remembering, and an attempt to remove the incessant chatter from my head. Even as the foggy days of caregiving were playing out in front of me, I discovered that fatigue fathered forgetfulness. I was terrified that I would allow exhaustion to cloud my memories and felt compelled to write everything in the notebook I kept with me. Writing a book was the farthest thing from my mind. Survival and remembering were my only goals.
After several years of noting events and feelings, the notebook of thoughts seemed to take on a life of its own and evolved into the idea for this story. My mother read the original draft when it was about 75% completed. Her response, “Thank you so much for writing this. I’d forgotten so many things about our journey together.” And she went on to say, “You should let other people read this. I like it!”
With Mom’s approval and encouragement, I am sharing this story with you.
…
Dear Reader
When thrown into the role of caregiver, life often becomes surreal, careening out of control. Perhaps you are embarking on your own caregiving journey, without the benefit of experience and preparation. As you read my story, I have included a practical reflection—a bit of wisdom gained from experience—after each chapter, extending hope and allowing you to apply something from my journey to your own. I don’t pretend to have all the answers regarding caregiving, so this book is not a how to, but rather a story based around my experience.
Please note that names and some details have been changed throughout the story.
I wish you stamina and peace as you navigate your role as caregiver.
Blessings, Barb
…
Introduction
It’s only 10 o’clock in the morning and the familiar fatigue has already arrived. I’ve prepared breakfast and lunch for my husband and managed to swallow a few bites of food between trips up the steps to care for my mother. So far today I’ve made sure that she had breakfast, dealt with bedside commode issues, washed multiple loads of laundry including sheets, towels, and clean up rags, given Mom a shower, dressed her and made sure that she’s comfortable and contented, hopefully for a few hours.
An unending list scrolls through my brain… grocery store… pharmacy… doctors’ appointments… don’t forget Mom’s hair and nail appointments… plan meals… make a sandwich for Mom and loosen the cap on the Ensure bottle so she can “open it herself” at lunch time… fold all the clean laundry… run the vacuum cleaner… dust the furniture… clean the bathrooms… spend time with Mom… feed the animals… relax… take a quick nap… deal with the piles of bills and bank statements… balance the checkbook… take a bath and put on fresh clothes… always be prepared for the unexpected… check the schedule to see who stays with Mom tonight… and try not to borrow trouble… live in the moment… this moment… one moment at a time…
As I catch myself staring out the window I notice that Spring has begun to emerge from a seemingly endless winter. It’s been colder and snowier than in past years and I wonder when the daffodils, hyacinths, and forsythia began blooming.
The past few years are blurred as a spiral of despair threatens to pull me downward. My spirit, fading to grey and withering beneath the weight of responsibility, somehow hears a tiny voice whispering, “Writing can heal.”
As I listened and remembered, the story began to spill onto countless journal pages.
What we call despair is often only the painful eagerness of unfed hope.
− George Eliot
…
Part I
Birth
Bewildered
Bidding Adieu
Reflection
Just Hang On
In spite of the appearance of everything falling apart… in spite of not recognizing yourself anymore… in spite of feeling completely disoriented, you can hang on. If you hang on, the sun will rise again tomorrow and you can see the beauty of spring flowers, a symbol of hope.
You don't know what to do, yet a tiny voice inside whispers, “Hang on. You can do it.” Just being able to hear that voice is reassuring.
Sometimes you have to ask someone stronger than yourself to help because you, alone, no longer have the strength. You could even write the words, Hang On, on sticky notes and put them on the mirror or refrigerator. Stick them in lots of places so you see them often. There is power hidden in these words.
I’m sure the blooms waiting safely within frozen bulbs somehow know that if they just hang on, they will eventually feel the warmth of the sun, allowing them to finally grow. I hope you can accept encouragement from the blooms and little by little, you’ll find that hanging on isn’t so difficult. Little by little you will store those words in your heart, not just on a mirror.
Just like the blooms hidden within the bulbs, please know that warmth and light are within reach.
Today, know that you can hang on.
…
Chapter 1
Life Before