11.  Managing the Caregiver/Loved One Relationship
Caregiver Series Part 11

Life with SCI can be complicated to say the least. We face many challenges that can really slow us down, but pushing through them, drives your strength. My 23-year-old son sustained a spinal cord injury in August 2014 resulting in him becoming a quadriplegic. He had just graduated the year before from college as a mechanical engineer and was living with three friends ninety minutes from home. Life was really good for him. Unfortunately, life for me was not so good. I was seriously considering a divorce and had enrolled in college to get a degree as a medical assistant to support myself (not having worked in years due to health issues).

Needless to say, all that changed when my son sustained such a catastrophic injury. I knew that I would need to be his caregiver and be the best support possible for him. My nature has always been to care for others. However, the intense care my son needed was so overwhelming and I was not sure I could physically do it. Somehow I managed and as he gained more skills it became less demanding on me physically. Watching him give it his all inspired me to do the same.

Such an event turns both the loved one and caregiver’s lives upside down. You suddenly have to lay aside any hopes and dreams you both had and focus on how to adjust to such a traumatic life change. Though it was difficult for both of us, my heart went out to my son who had just started to enjoy his post college adult life with a new job, new location, and living with friends that included his best friend from middle school. 

After rehab, we lived together in a small two bedroom accessible apartment. Life remained very fluid as he became stronger and worked hard to gain new skills to become more independent. He was moving so fast it was actually hard for me to keep up with all the changes. But then there were times that complications associated with SCI happened and I would need to provide more intense care and advocate for him medically. With a spinal cord injury you have to be prepared for the reality that serious health problems can and do occur.

Fortunately, my son and I always got along well. Our relationship did have some difficult “bumps” after he was injured but we made it through each one. As a result, our bond became stronger. I wanted my son to have as much freedom as possible even though we were living together and he needed care. When he had friends over, I would often go into my bedroom. But as he got more comfortable with me being there with him and his friends, he would only ask for privacy when he wanted it. He also started driving 6 ½ months after he was injured so I began going to places with him only when I knew he would need my help. The less he needed me, the better he felt about himself. It was actually harder for me to adjust to the changes because it made me have to focus more on my own life. I was going through a difficult divorce at the time and knew my life would be changing even more drastically.

Though I was his caregiver, I never lost sight that I was first and foremost his mom. That is what helped me give the right support he needed and not pamper him or do anything I felt would hinder his progress. If I did, he was sure to let me know. He wanted control of his own life and I am so proud of his strength and courage.

This journey with my son has brought us closer together and our mother/son relationship continues to grow. He is so very independent now and is able to live alone with support from both me and his Dad. The hardest thing for me is knowing that life can change in an instant with a spinal cord injury. I try to remain positive and I am so grateful for the progress my son has made. We are in new phase on this journey with us now living apart. We are both continually making adjustments to our own lives. But one thing has not changed – the strong relationship we developed as a result of his injury. That has been the silver lining in all of this.

Here are a few tips that can help along the way:

  • Be open and communicate well with each other. Talk about the hardships you are both struggling with.
  • Seeking therapy or counseling is helpful to learning how to cope with giving and receiving care and maintaining healthy relationships throughout the process.
  • Problem solve together.
  • To alleviate stress – develop a strong support network of family and friends that can lend a helping hand or listening ears when caregivers become overwhelmed.
  • Caregivers should be mindful of maintaining their own physical and psychological health. A caregiver’s mindset can easily be transferred to the individual who needs care. This can be a positive and/or a negative effect on the individual. Stay positive while providing care.

Caregiving is one of the most selfless acts someone can do. But I hope in the midst of providing care you remember you are so much more than a caregiver. I pray you too are able to see the silver lining in the midst of it all.

Caroline

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