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Worthy to be cared for

As tomorrow is National Caregivers Day, I share this story because, as nurses, we care for patients every day and are the first caregivers to our children, family members, neighbors, and friends.

I received the call over ten years ago when I was dancing in the heat of the August sun, watching my husband’s band play in an afternoon festival in Fort Collins, CO. It was my sister, Hannah; she said she wasn’t feeling good, she had a migraine, and her body wouldn’t stop shaking. My sister gets migraines quite often. However, the shaking was something new. Given she lived two states away from me and I couldn’t assess her directly, I told her to go to the ER ASAP to be seen. Little did I know this would be the last time I would ever hear my sister speak again.

As my partner’s band finished their set, I called to check in on my sister. Her boyfriend, at the time, held the phone up to her ear and all she could do was moan. He said she could no longer move, and she couldn’t speak. I was on a plane that same afternoon, and when I arrived at her ICU room that evening, she couldn’t move or speak and could barely keep her eyes open. This moment would be the beginning of two months in a coma, leaving her a person with quadriplegia who could not move or speak. Hannah was an incredible roller derby player; she was physically fit, had an eight-year-old daughter at the time, and had no previous medical history except migraines.

This all occurred as I was prepared to head back to graduate school in the fall at CU Boulder to get my Master’s in Dance. I decided to take the fall semester off, and I moved into Hannah’s ICU room, followed by her rehabilitation room in Roseville, CA, and eventually into her room at Craig Hospital in Denver. I bathed her and helped her relearn to swallow and eat. I was her voice and advocate and didn’t leave her side. Every evening before bed, we would play her favorite song, “Party in the USA,” by Miley Cyrus, and I would dance around her room. My sister couldn’t speak; however, she could still laugh and cry, and no matter how hard the day had been, she would always laugh at my bedtime dance moves.

Tomorrow is National Caregivers Day, and I share this story because, as nurses, we care for patients every day and are the first people to show up as caregivers to our children, family members, neighbors, and friends. We hold a lot in our work as nurses, and sometimes we carry even more as personal caregivers. When caring for my family and others outside of my work as a nurse, especially being a long-term caregiver for my sister, I follow the Caregiver Bill of Rights by Jo Horne. This Bill of Rights can make a difference in creating and establishing mutual understanding, especially with family when boundaries can be so difficult.

The Caregiver Bill of Rights

By: Jo Horne

As a caregiver, I have the right:

  • To take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of my relative.

  • To seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.

  • To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.

  • To get angry, be depressed, and express other difficult feelings occasionally.

  • To reject any attempt by my relative (either conscious or unconscious) to manipulate me through guilt, anger, or depression.

  • To receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.

  • To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

  • To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.

  • To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.

  • To ___________________________________________________

(Add your own statement of rights to this list. Read the list to yourself every day.)

— Jo Horne, author of Caregiving: Helping an Aging Loved One

As we celebrate ourselves as caregivers both inside and outside of our work as nurses, I offer my own addition:

  • To remember, I am worthy of care as I care for others.

I remember how hard and long the days were caring for my sister; I danced in her room every night because it was the only outlet I had to care for myself. By honoring my need to dance, I also passed on my joy to Hannah, as my fancy nighttime moves always made her laugh. May we honor our need to be cared for and not hide our joy when it arrives but experience it fully in hopes it inspires others to do the same.

Tomorrow I celebrate all of us as caregivers in our work as nurses and as mothers, sisters, fathers, brothers, partners, grandchildren, daughters, and sons. I also acknowledge that you may not identify with any of these identities, and I celebrate you as a human caregiver and your many roles. I also recognize the incredible humans who have taken the time to be my caregiver, care for, see, support, and honor me. Lastly, I honor myself as the caregiver of my own heart. I celebrate the ways I tend to my needs and show up for myself every day.

I see you, nurses; I celebrate you and all the ways you care give for so many and how you are also finding the beautiful ways to care for your own heart in the midst of it all. Remember, you are not just a caregiver; you are also worthy of being cared for.

Tara Rynders, The Dancing Nurse Educator and Nightingale Luminary, is the CEO and Founder of The Clinic, an arts and play-based immersive theater company that offers workshops and keynotes to create more sustainable, (Re)Brilliant, and equitable healthcare systems.

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