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Advice from a Caregiver of a Loved One with a Spinal Cord Injury

March 02, 2021

After a traumatic injury, such as a spinal cord injury (SCI) or brain injury (BI), often a family member becomes a caregiver for their injured loved one. When they do, they are joining a group of about 40 million Americans who provide unpaid care to adults with limitations.

This care is essential to the health and well-being of the injured person, and they require time, dedication and education. Caregivers can be the unsung heroes in someone’s rehabilitation from an injury, and at Craig, we strive to provide the tools, community and encouragement that they need to do the best possible job.

In honor of Caregiver Appreciation Day, we connected with Heather Zoccali, an enterprising caregiver of a Craig grad who has since dedicated her career to supporting the caregiver community at No Barriers USA. We asked her questions about her experience as a caregiver for her son, Connor, and her moving experience and thoughtful advice is included here.

When was your son at Craig, and how was that experience?

Connor was walking to school March 10, 2015, and was struck by a hit-and-run driver, leaving him a T12 paraplegic. He spent one week at the Medical Center of the Rockies ICU and then moved to Craig Hospital one week later. Connor was 16 at the time of the accident, and he remained at Craig until June of 2015. To this day, I still have such intense emotions about the day we arrived at Craig.

There is a palpable joy, hopefulness and reality that takes your breath away when you walk into Craig. I hadn’t imagined seeing so many people in chairs (quite naive, I know), and happy faces, laughter and kindness wash over you even before you enter the building. Seeing so many people living life with smiles and bonding struck me in profound ways I will never forget.

As we entered the elevators to transfer Connor to his room, I could feel myself overcome with emotions. They rolled Connor out – still in pain and in his ambulance stretcher – and then the door closed, my knees buckled, and I grabbed my husband and lost it. I cried from my soul - a feeling I’d never felt before because it hit me like a punch in the gut that he was paralyzed, that he may never use his legs again or be able to use the bathroom on his own. It ripped my heart out, but at the same time, I felt so guilty for feeling this way; we were in one of the best rehab facilities in the country, it was located only one hour from where we lived, and Connor was “lucky” that his injury was so low that he could breathe, eat, drink, use his hands, and eventually transfer, drive, etc. on his own. All these things hit me at once, and for four floors in the elevator, I just lost it. When the elevator doors opened, my husband said, “He is where he needs to be, and I feel so good about this and hopeful.” I gathered myself together, hung onto those words and let the rest go in order to be there for my family.

Caregiver Appreciation - Heather with her son hiking

How long have you been a caregiver for your son, and what does that typically look like?

March 10, 2021, will be six years since Connor’s accident. He has a T12 SCI, so he doesn’t require as much hands-on help every day compared to some others with spinal cord or brain injuries. We mainly help with household chores or anything medical, like appointments with the doctor, physical therapist, occupational therapist or massage therapist, plus insurance management and wheelchair maintenance.

How has that role changed over the years since he did his rehabilitation at Craig Hospital?

Connor was a teenager when he was hit by a car. Learning to live as a spinal cord injury survivor is tough enough to navigate as an adult, but helping your young teen navigate and talk through all the changes was heartbreaking. But we made it through the teen and mom fights, even if the entire floor could hear us at times (Let me just reiterate that he was a teen and the chair does not change that 😉). In many ways his injury brought us closer together because I had time with Connor at an age when teens are typically pushing away from their parents. It changed the dynamics of our relationship for the better, I think.

Now Connor is a young adult trying to figure who he is and what he wants to do with this brutally beautiful life – just as we all did in our twenties! So, I feel that my job is still to make sure that his health is okay but also to let him fall on his own and get back up and try again. He can come to me when he needs help or advice; otherwise, just like any young adult their twenties, you get pushback if you try to offer unsolicited advice.

On the physical side of care needs, he is more independent, and on the emotional side, he does need me, maybe even more than before, and he needs to know that I am always here and we will figure things out together.

Caregiver Appreciation - Connor
Photo by Alexa Ammon

What have you learned about yourself from being a caregiver?

I have learned that we are far stronger than we think we are.

I try and soak up every second of life that I can because life can change in one second. Life is so random, and nothing is guaranteed. I value time with family, friends and myself.

You have to look harder sometimes, but you can always find the good, the magic or the lesson in every tragedy or setback; it’s a choice. You can choose to be angry and ask, “Why me?” Or you can choose not to let anger and bitterness take up space in your head, and choose instead to find the good and the magic and turn your pain into power and fuel for goodness.

I found a new purpose and started an organization that supports caregivers through self-care, and now I have a bigger reach after merging with a larger organization (No Barriers USA).

Is there any advice that you’d give new caregivers?

  • Grieve. Grieve for the life you had envisioned for your loved one, and grieve for the dreams you had for yourself. Feel all the feels you need to: anger, sadness, hope, etc. Then process them whatever way you need to – by writing, crying in the shower, hitting your pillow, or going somewhere to scream and get it out!
  • Accept help, especially after you get home; make a list of the things you feel comfortable accepting help with. Have this ready to give to people, and they can pick what they feel comfortable helping with. Everyone will feel good to give and receive.
  • Ask folks to reframe how they ask about your family. If you have kids in the house, ask friends to ask about them first, then the primary caregiver, then your loved one. This way everyone feels seen and heard, and it sets the stage for boundaries and self-care.
  • Make dates with your other children or partner who is not the loved one you care for. This way you can have quality time together. Don’t bring up caregiving for your loved one during this sacred time – invest that time in really seeing that person. It can be as easy as chatting with a cup of tea on the couch, and tell the rest of your family that this is our time and to please respect this boundary.
  • Begin your self-care now!!! You need to take time each day to do something for yourself. Let your loved one know that you need this time to be better for yourself and for them, and thank them for their understanding and support. Walk to a coffee shop, grab a drink with friends, pick up a hobby, etc.
  • Find community, not only online but also in person (when it is safe). Even connect with folks outside the SCI and BI world, because it opens up resources and perspective and you’ll then have even more people who “get it.”
  • Be kind, gentle and graceful with yourself. A massive change has happened, and you are trying to figure it all out. You are enough. You have an identity outside of being a caregiver, so have fun figuring out who you are outside of that role.
  • Find the humor in things. Dark humor is a lifesaver.
  • Practice forgiveness. Self-forgiveness and forgiveness of others are some of the most powerful things you will ever do in your life. I met with the gentleman that hit Connor and let him know I wanted two lives to be better, meaning both his life and Connor’s life. I forgave him and asked him to be better than that day he left Connor on the side of the road. I said that I will also be better, and we will both fail but we get back up and try again. That set me free, let me forgive myself for fighting with Connor right before he was hit, and let me release so many things in order to start making my corner of the world a better place.