Finding Joy as a Caregiver

Some days one gets up and the day begins. Other days one gets up and, before the end of the day, one’s world has changed forever.

John Swan (far right) performs at a jazz club in DelRay Beach in 1982

On February 12, 1991, my world changed forever when my husband, John Swan, had a massive stroke. He was 53. Prior to this event, John and I were both professional musicians. Without the slightest concept of what a stroke was, I was truly clueless that my life’s paradigm had shifted forever and I was walking a new path as a caregiver.

Now, 25 years later, John and I have accepted our paradigm shift and discovered a new life of joy. Our lives today are not at all what we expected prior to the event. They are different, but in so many ways, better than what we expected. Each day is filled with the joy and peace of knowing that although we did not choose this path, we did make a conscious choice to do it well.

John’s acceptance of his stroke and my move into the role as his caregiver has given me the opportunity to explore life’s lessons in a deep and meaningful way. Since I looked at our circumstance as an opportunity to learn lessons and grow, I created a new life. I didn’t stop the music of our previous life as professional musicians—I just created a new kind of music.

Following are three of the lessons I learned that helped me to create this new music. These are the basic premises of the thought process for living in joy.

1. Take action to create solutions

The first lesson I learned was the value in taking action to create solutions for John and me. There was no expecting someone else to solve our issues. By accepting this premise, I switched my brain energy out of victim mode. That practice removed negativity and allowed the creative side of my brain to come into play. All of a sudden, it was easy to make decisions and to find solutions. At the end of each day, creative thought found the solutions I needed. After 25 years of finding solutions, I live in the joy of knowing I did the best I could in each moment. I am at peace with the outcomes of the actions I took.

2. Choose acceptance

Simplicity and acceptance of our life’s situation are other things that still create joy in my life because I actively choose those options daily. An example of this simplicity: giving John only the pieces of silverware he needs instead of following formal table setting guidelines. I also do not look back at our life before his stroke — I accept where my path is now. The choice I make to live with simplicity and accept the paradigm shift of John’s diminished capacities is what releases the weight of being a caregiver that is ever on my shoulders. The lifting of this pressure makes my tasks light each day. I have less fatigue; I can live in joy. There is peace and love in our home.

3. Live with gratitude

Other people are not aware of the long-term difficulty of moving a person in a wheelchair for perhaps years. They may try to be polite and hold a door, or ask if you need help. The lesson I learned from their politeness is to make sure that I remember to say “Thank you” to the door person. It is more than the simple thank you it may appear to be. I turn their assistance into an opportunity for me to practice gratitude as a way of life. For me, living in gratitude daily is what keeps my attitude healthy and my burdens light.

My joy in being a caregiver comes from those three important lessons. I take action to find solutions, I make a conscious choice about how I react to all situations, and I opt to live in gratitude each day. I call it A.C.G. (Action Choice Gratitude). These letters are posted on a sticky note on my desk as a constant reminder of how to live joyfully each day. Since I pay attention to all three of them, I truly do allow these guidelines to be a part of my daily routine. Because I practice A.C.G. like a good musician practices their instrument, each day it is easier to follow this path. Over the years, this continual process has become ingrained in my personality. It is part of who I am. It is my purpose to live this way.

Nancy Weckworth, 1985

John Swan, 1985

There is one other rule I consider crucial for all of us—not just those of us who are in caregiving roles. That rule is: “Take care of yourself first, so you can take care of others.” This rule is especially important for caregivers to follow because our caregiving duties can lead to severe fatigue. It is important to stay rested mentally, physically and emotionally so that one can follow the A.C.G. method of remaining joyful. It is all about being well enough as a caregiver to allow your brain to remain healed and alert to one’s own thoughts, feelings and actions throughout the day.

Following this rule means creating opportunities for respite for yourself. This respite can take the form of an afternoon off at a museum, a vacation without your survivor or merely hiring someone to do your caregiving tasks for a day. In reality, respite is doing whatever you enjoy solely, without your patient. In my own journey as a caregiver, it took me a long time to learn the true value of respite. It was almost three years before I realized I had to stop what I was doing, get away and allow myself to heal. Another part of getting away, of course, was creating a plan for John’s care while I was away.

Creating that plan was another layer of stress for me. What I did to solve the problem of his care was to assess what he could and could not do. Then I found other reliable team members to check on him throughout the day to make sure he was doing what he needed to do to take care of himself. I created a team of neighbors and friends who each did a small part. Of course, they had the phone number of where I was at all times. Once I created the plan and the team, I left town for a short vacation, knowing that I had done the best that I possibly could to make sure John was fine. I just breathed, left town and let go of my need to control every moment of his care.

After my first success at creating respite for myself, I realized the positive results were two-fold: first I got away from John and his care — I healed. Second, John got away from me and learned to be more responsible for himself. We both grew! What joy!

After 25 years of learning lessons about caregiving, my days are now filled with the honor of being able to be of service to another person. I am grateful that I was given the opportunity to learn these lessons. The best part of it all is that I can now share my lessons learned with others. My new music—my life’s purpose—is that of sharing how I learned to live joyfully as a caregiver.

I truly hope you will find as much joy in caregiving as I have. I hope that I have given you a small gift in sharing the lessons that I learned. Be at peace with yourself and your role. You are a caregiver.

Editor’s Note: Nancy Weckwerth is the author of Don’t Stop the Music: Finding the Joy in Caregiving.

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