Lessons learned by a caregiving warrior | Guest Blogger Donna Cardillo, RN

Posted by Reeve Staff in Daily Dose on July 12, 2018 # Caregiving

When my husband became disabled 23 years ago, 12 years into our marriage, I had no idea what to expect or what life held for us. We were faced with so many losses. But I never anticipated gaining so much wisdom and insight into myself and life and becoming a better, stronger person in the process. Here’s what I now know.

1. The caregiver experience is a very different one from that of the person we care for. I was initially focused only on my husband’s needs. His reality became my reality. Eventually, I was yearning to connect with others who had my shared experience—but not in the presence of our sick and disabled loved ones—where we could vent, commiserate, and just support and validate one another. There can be great comfort and clarity in spending time with those who have walked in our shoes, who have an unspoken understanding of our unique situation and challenges. I initially found some family caregiver support groups (I even started one of my own early on, I was so desperate!) and caregiver seminars and events. But today I find comfort and solace in one-on-one friendships with other caregivers, which I nurture in-person and online. It reminds me that I’m not alone on my journey and gives me the strength to carry on.

2. Caregiving involves so much more than direct physical care. Making appointments, dealing with insurance companies, running errands, doing paperwork, supervising care providers, providing emotional support for our loved one and the entire family, running to the emergency room and medical appointments are all part of the caregiver resume. It took me a little time to accept that I was a family caregiver after initially rejecting that label because my husband didn’t need me to feed or dress him and was fairly independent at first. Once I acknowledged my new role and all that came with it—including the stress, anxiety, frustration, and grief as well as the hidden gifts—I was better able to identify my unique needs and tend to them.

3. Self-care is as important as sleeping and eating. It is not a luxury, or pampering, or a reward or something to do only if and when we have the time or “extra” money which often translates to never. In reality, self-care is routine maintenance for the body, mind, and spirit. We can’t possibly provide the best care for our loved one and family if we don’t make our own self-care a priority. It was only after I had almost totally burnt myself out, 6 years after my husband became disabled, that I realized it was not only a survival but eventually a “surthrival,” strategy for me—going from mere subsistence to thriving. Now it is a routine part of my life. I can’t possibly operate at my highest and best, or stay healthy and well, without it. It’s akin to eating and sleeping. Health check-ups, socializing with friends even if they come to me, spending time in nature, an occasional spa day, creating a meditation and yoga practice at home have all become part of my life. Energy expenditure must be replaced by energy replenishment. We can’t draw water from a dry well.

4. Acceptance rather than resistance is key. No one ever dreams of one day becoming a family caregiver. Yet many of us have found ourselves in this unique and challenging role. Buddhists say that pain—physical, emotional, and spiritual—is inevitable in life but that suffering is optional. The suffering occurs when we resist or deny what is (Why me? Why did this happen to us?) rather than accepting it. Acceptance doesn’t mean giving up. It does mean embracing a new normal and finding ways to live with it, through it, and sometimes around it. Acceptance also allows us to make the best of any situation and be grateful for what we do have. There were many things my husband and I could no longer do but we found new things to do and enjoy together. In some cases, we found new ways to do things we always loved doing.

5. I can’t do it all alone. Prior to my husband’s disability, I prided myself on being very independent and self-sufficient. But when he became ill, and especially after he became paraplegic, I realized I had to allow other people into my world. I started saying yes to offers of help from friends, neighbors, and family for everything from grass cutting to shopping to meal preparation. I sought out community resources such as volunteer caregivers to provide transportation, run errands, or just stay with my husband while I took a walk or caught some alone time. Help is available everywhere if we open ourselves up to it and don’t constantly turn it away out of pride. I also learned that allowing others to help is a gift to them as well as to us.

6. There are great opportunities and blessings in caregiving. The truth is that I have learned more about myself, the power of love, and the strength of the human spirit through this experience. I’ve managed to cultivate a resilient nature which I can teach and model for our children and others. I’ve been given the opportunity to help others in the same situation with their own journey. And when we bring light into other people’s lives, we illuminate our own darkness. I’ve also learned to become more humble, patient, and grateful. I no longer sweat the small stuff. We’ve become stronger as a family unit and have learned to laugh and be joyful even in the face of adversity. Every day I count my blessings and am appreciative of everything I have and everything I’ve learned. Yes, life is good.

Donna Cardillo, RN, MA, CSP is the author of Falling Together: How to Find Balance, Joy and Meaningful Change When Your Life Seems to be Falling Apart. She is a wellness blogger at DrOz.com, facilitator of the Empowered Woman, Enlightened Life™ retreats, and sought-after keynote speaker. She and her husband Joe live at the beautiful Jersey Shore where they enjoy life, family, and each other.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.