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Excerpt from "Making Peace with Death and Dying"

The Ups and Downs of Caregiving

by Judith Johnson


My mother’s given name was Grace, but we called her Cake. She and I shared a home during the last nine years of her life from age 80-89. On the balmy and beautiful Sunday of her final Memorial Day weekend, Cake fell backwards down a flight of stairs. I was a mere five yards away and out of sight when I heard her cry out a millisecond before her head hit the cabinet at the bottom of the stairs, and she landed in a thumping heap on the floor. In that instant, every cell of my body screamed with terror as I ran to find out if she had survived and, if so, how broken she was. Blood was spouting from her head and elbow to the rhythm of her heartbeat. Calm, as she had always been in a crisis, the RN in her directed me to elevate her head, compress the wounds, and call 911. I didn’t have enough arms and for twelve long minutes until the EMTs arrived, the rest of the world disappeared as I held Cake and felt more helpless than ever before. And my love for her was magnified more deeply than I had ever loved anyone before. My life as I had known it was disappearing from view as I became consumed by fear, shock, and my new responsibilities as a 24/7 caregiver and patient advocate in territory I had never seen before.

Yes, it was horrible. But there was also tenderness and a deepening intimacy that opened up between us that was the sweetest connection with another person I had ever known. I was terrified of the responsibility but thank God the depth of my love for her made me very brave.

There were times when Cake’s needs felt like a bottomless pit and an endless parade of critical events. Sometimes I didn’t know what day it was and often never got out of my pajamas. I lost all momentum in my personal endeavors and became isolated from my friends. In spite of how much I loved my mother, I often felt overwhelmed and trapped.

I didn’t realize that, as a caregiver, I needed care too. Family support was very limited, and it seemed as though it was Cake and me against the world. When I reached out to friends for comfort, they seemed to only hear my anger and frustration with the situation. They didn’t recognize that I needed them to love me enough to allow me to show this part of myself to them and love me anyway and love me through it. Instead, they withdrew, and I felt abandoned.

With that said, the deepening love and tenderness that Cake and I shared far outweighed the price I paid by putting my own needs and life on the back burner. In spite of the frequent life and death emergencies that blindsided us day after day, and never feeling that I really had a clue how or what to do, we lived in love’s embrace each and every day. I discovered that the bond of love between us was stronger than the trials and tribulations of Cake’s dying. That was a great comfort to me – to know that I was capable of that kind of loving. We were like dance partners bound by love and circumstance, sometimes following and sometimes leading each other through to the end.

I would be less than honest if I didn’t confess to getting a good look at my own dark side as well. Sometimes I wasn’t very nice to Cake – or myself, for that matter. My own frustrations, impatience, and other less-than-lovely qualities got the best of me. But then a switch happened. I was bringing her to the hospital one day when we locked horns about where to park and what door to enter. Disconnected from each other by our attachment to our respective points of view, our loving bond severed in an instant and was replaced by a palpable, cold hatred of each other. I wanted to slam her in her wheelchair against the wall, and her fantasy of what to do with me was no kinder. We carried on because we had to but shut each other out for several hours. I was shocked by how easy it was to be so unkind and how tenuous the ties of love can be if we let them or neglect them. I recognized how easy it was to squelch what little dignity and autonomy my mother had left by simply overriding her input because I thought I had a better solution to the problem at hand or because it was more expeditious for me. It was moments like this that tested our love and my commitment and intention to be a good and loving caregiver. Thankfully, we both made the choice that it was more important to be loving than to be right.

With 20/20 hindsight, I now recognize what a privilege and a gift our time together was while bearing witness to one another’s deepest truth. We stopped putting on a happy face for each other when we were struggling and allowed our authenticity to be seen – our wonderful qualities and those darker parts of ourselves that had plenty of room for improvement. We learned to love and accept each other in the fullness of our beings without condition through it all. We allowed nothing to be more important than loving each other.

We both learned we were better at giving than receiving love, but each of us broke through what stood in our way of letting another human being really know us and love us and care deeply for us. Thanks to Cake and this experience we shared, I have no doubt that I am both wildly lovable and capable of very profound loving as well. It’s ironic that something as feared and scary as the death and dying of a loved one can teach you about love. I think that is one of death’s greatest gifts for those who face death with open hearts together.

Judith Johnson is an author, mentor, and educator whose mission is to help others to raise the level of consciousness from which they are living their lives. For over forty years, she has been studying and teaching the dynamics of how our beliefs inform our thoughts, feelings, and behaviors as individuals and in our relationships, social order, culture, and institutions. Johnson’s work draws upon her own life lessons, wisdom teachings from around the world, doctoral degrees I social psychology, and spiritual science, and her experience mentoring others since 1983. Ordained as an interfaith minister in 1985, she serves as a chaplain at her local hospital and counsels and comforts the grieving. She is the author of The Wedding Ceremony Planner she and Writing Meaningful Wedding Vows. She lives in New York’s Hudson Valley


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