​Caregivers Guilt; Taking Care of a Quadriplegic

Posted by Amber Collie in Life After Paralysis on July 12, 2021 # Caregiving

Amber and ZackWhy do I feel guilty? I work very hard, and around the clock hours, I do my best. I need to give myself a break, and I would tell a friend the same thing. When my son Zack broke his neck in 2010 as a 15-year-old teenager, it drastically changed my family's life. I will never forget hearing the prognosis. I knew it was serious the second the doctor asked my husband and me to sit down, prodigal when sharing very bad news in case someone faints. In my husband’s case, this was close to true; oxygen was given and everything. However, I went inward and got quite a strong feeling of determination that we would beat this.

The doctor gave Zack a less than zero chance of ever walking again. I only heard that he still had half of the percentage. I now know that no doctor can say that he would fully recover, so that was his way of telling us the worst-case scenario as lightly as possible. For the first two years, I was Wonder Woman. Looking back, I have no idea how I did what I did. My husband went to work in the morning, and I got my newly paralyzed son dressed and out of bed, with the help of my 13-year-old son; on top of getting my second-grade son and kindergarten daughter ready. Everyone was off to school by 8:22 AM. After getting everyone ready for school, I would drive over an hour to physical therapy. Zack would do therapy for 3 hours; I’d then drive back over another hour just in time to pick up the 3 siblings. Finally, I’d get them all home, start Zack’s shower/toilet program, kids’ homework, dinner, and bedtime routine.

During these years, Zack was still being turned through the night. He would wake up for water or need to be repositioned because of an overpowering body spasm. It took us years to figure out, but we figured it out. We would tie his crazy spasm legs down at night and give him a water camel pack to get water in the night without waking someone. These 2 seemingly small things allowed both Zack and me to sleep through the night finally! The grieving process is different for each person. I hit an angry stage around this time. Up until then, I was high on adrenaline and taking on the world. Now I was angry. I then moved into an acceptance of my new but unwanted life after realizing I seemed more upset than my now 18-year-old son was, and he was the one in the wheelchair.

I gave it my all. I helped Zack finish high school by working with his school. He did one year at home and half days the last 2 years of school. He graduated with his class in 2013. We applied to the nearest 4-year college. Zack was then granted a scholarship. In his first year at college, he commuted to school, but in his 2nd year, I wanted Zack to experience more independence. Working with the college's housing part, we figured out how Zack could live on campus with hired caregiver help. It took Zack 5 years to get his bachelor’s degree. Slow and steady, but he did it! We celebrated with a surprise trip to Hawaii. Our 2nd time was navigating a wheelchair on an airplane. We had previously made a weeklong adaptive skiing trip from California to Colorado.

My son is now 11 years post-injury. He has lived on his own and even had a fiancé for 3 years. Unfortunately, that relationship ended, but the experience of being in a serious relationship was worth the heartbreak. Zack is more than halfway done with his master’s program for counseling. He has a yearlong internship coming this fall, 2021.

When my caregiver guilt creeps up, maybe it’s because I can walk, and my son cannot, or because I just want more for him, I remind myself to look back on all that we accomplished. I am proud. Life has not been easy, and I have had my share of issues, but I am human, just like you. So, if you are in a similar situation with caregiving, stop and think back. I bet there are quite a few reasons to give yourself that break!

My life has had many parts, I could write a book just on that section but let's fast forward to when I married Adron Collie. Two weeks after turning 20 (yes, very young!) I had Zackery at age 22, Levi at 24, six years later Kaden, and 18 months after that daughter Laila, making me a busy mother of four. At that time, I also ran a photography business. The year Zack was injured I had a child in Preschool, Elementary, Jr. High and High School. Four kids in four schools! I thought I was so busy, just getting their drop off and pick up times correct was a challenge. I have to laugh now thinking back on that because little did I know my life was just about to turn upside down.

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.