23: The Gift

23: The Gift

From Chicken Soup for the Soul: Family Caregivers

The Gift

Gratitude is an art of painting an adversity into a lovely picture.

~Kak Sri

Ours was a love story. Thirty-one years of love, 25 of which I spent as his caregiver. Twenty-five of the hardest years of my life, none of which I would trade for anything. How could I have known during those lonely nights, exhaustion biting at my last nerve, that when this was all over, there would be a big hole in my life that his had so richly filled?

We got married when I was just 23, and he 20 years my senior. The age difference didn’t seem to matter because there were so many other ways in which we were kindred spirits. We loved long walks, skiing, dancing, music. There was so much to share. The 20 years between us just melted away, of no consequence. We danced through those first six years together, raising children, having adventures, growing closer.

Then one day, this robust, healthy man came home from work, and I found him writhing on the couch, incomprehensible. He thought he had the flu, but I knew it was worse than that, and bullied him into going to the doctor. He was not strong enough to resist. From there, he was rushed to the ER in kidney and heart failure. The good people there stabilized him, and we began our 25-year odyssey with end-stage kidney disease.

Together, we learned how to perform peritoneal dialysis treatments at home. Later, we weathered a couple of kidney transplants, drug reactions, peritonitis, hemodialysis, a stroke, and so many other challenges. There was no handbook about how to gracefully go from lover to caregiver, how to reverse roles without bruising egos and hurting feelings, how to be terrified and strong all in the same moment because someone you love needs you to be the rock that grounds him. There was no manual that could tell me how to endure the loneliness that comes from being married to someone who often slept most days, tuning out the world, someone who could no longer give anything emotionally to the relationship, so taken up was he with his own survival.

Being his caregiver was like having all my deepest feelings exposed to the elements, the wind and pelting rain, the fiery ice and the lightning. There were no days when I could wake up carefree and excited about what the day might bring. I already knew what the day would hold. Every day took everything I had in me: all my strength, energy, patience, love, tenderness, as well as grit and determination I didn’t know I had in me.

Through those years, my husband exhibited courage and fortitude I have rarely seen in another human being. My respect for him grew enormously, as did my love. I went from loving him to cherishing him. We learned to laugh at everything. We had to laugh. What else can you do when everything in your world seems crazy? Laughter saved our sanity I am sure, and to this day I am grateful for it.

I spent those years raising children, working full-time, and rushing back and forth to the hospital, work, and home, sometimes up all night with him and then off to the office in the morning. Occasionally, I actually wished I wouldn’t wake up ever again, just so I could finally get some rest. I felt a strange mix of emotions—angry, sad, exhausted, cheated. I felt so inadequate, so scared, so lonely, and oddly, so grateful. I was filled with a profound sense of joy, dancing just beneath the surface, for the love I had been privileged to share, for how powerfully illness can point out to us just what really matters in life. I felt the joy of giving, of how I was filled with happiness every time I came into his room and he smiled, to see how his eyes lit up when he saw my face, heard my voice. It may have been exhausting, overwhelming, gut-wrenching work, but it was also an honor and a privilege to serve as his caregiver.

When he reached his seventies, he really began to decline, and I knew that very soon he would require full-time care. I didn’t want to have to put him in a facility. I could not afford to live in the city I had called home for most of my life if I could not work full-time, and I could not afford to hire a caregiver. Besides, I had been there, hand in hand with him all through the years, and I wanted to be there when he took his last breath. I did what I had to do. I left my job, my friends, my home. I sold everything we had, including our car, and I moved 3,000 miles across the country to live with my daughter and her husband.

The move, while difficult, was incredibly cathartic for me. It was a process of reviewing a lifetime of possessions, memories, pieces of my life, and letting them go. Selling or giving away almost everything we had collected together over the years, millions of shards of what had made up our lives. Tears and memories, intertwined with joy and sorrow, placed in the palm of my hand, and blown away like so much dust. It was a time of goodbyes.

My daughter and her husband opened their hearts and their home to us. They were our safe port in the storm, and I will never be able to repay them for that kindness. There, my husband and I began our last chapter together. Caring for him became my full-time job. When I took him to his dialysis treatments at the local hospital, I had several hours to myself, and I often spent them walking in the park by the riverbank, trying to begin the process of separation. My husband’s prolonged illness had given us a special closeness that many couples never have. It was like we were joined at the heart. I knew he would be leaving me soon, so I needed to slowly recover pieces of my heart during my solitary walks. This became my healing time. I’m sure I cried enough tears to water a forest during that last stretch of our journey together.

In those last months, he and I talked about our life together, his death, how each of us felt about it. I reassured him that I would be okay after he was gone, and he acknowledged that he was exhausted and would welcome the arms of death. And he did, just seven months after we moved across the country. I was with him, holding his hand, kissing his forehead, wishing him a wonderful afterlife, feeling gratitude for the caregiving journey we had shared. It was a gift, you see, because ours was a love story.

~Ruth Knox

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