You are More Than Just a Caregiver 

 

Hi! My name is Caroline and I have been writing a series called ‘Caring for the Caregiver.’  Each article I have written has caused me to reflect on some very emotionally, spiritually and physically challenging times since my son’s injury. While difficult, it has been cathartic as well. I wrote from my heart as well as from my experience as my son’s caregiverMy son was 23 years old when he sustained a spinal cord injury (SCI) as a result of a diving accident leaving him a C-6 quadriplegic. Five years later he has a full life and lives independently – and has been for quite some time.  
 

I wanted to end this series with a video article so you get to know me just a bit better. The last of these articles is titled You are More Than Just a Caregiver. It’s very easy to get wrapped up in being a caregiver – and even become a codependent caregiver (to be discussed in a future article), especially when the needs of your loved one are great. I was fortunate that my son worked hard to be independent and that never happened to me. We were working towards both of us living on our own and I was only helping out as needed.  

I was not working at the time my son was injured and had recently separated from my now ex-husband. Caregiving, though often exhausting and overwhelming, became an escape for me while dealing with a very long and contentious divorce process. But I soon realized how much I missed the interaction with other caregivers and the newly injured that I had while staying at inpatient rehab with him. Though his daily schedule kept me busy at rehab, I had interaction with other adults through various organizations we were involved in. I began to feel lonely as I watched my married friends enjoying the normalcy of their lives. Facebook became both my friend and foe. SCI and caregiver online support groups became a way of connecting with others while still being able to do my caregiving duties. But it was hard seeing so many Facebook friends enjoying life to its fullest when I was struggling just to keep my head above water.   

My life prior to my son being injured consisted of quite a bit of volunteer work that was very fulfilling – especially the ten years that I advocated for abused and neglected children in the juvenile court system through a wonderful non-profit organization. I have always been a doer and thrived on challenging work. Artistically, I love to write – especially poems. Though I identified as a caregiver because that was full-time work for the first couple of years, my life’s interests had me doing other things right from the beginning. But I neglected to see that they were also part of me. Reflecting back, I now realize I was more than just a caregiver the whole time.  

My son, a mechanical engineer, invented his first product out of his own need while in inpatient rehab. He has since gone on to invent more products as well. Since I had experience in sales and marketing, I took on the job as president of his company and helped bring about global attention to his product on a zero dollar budget by writing articles on him and his product and knocking on doors through the internet and phone. It was an exciting challenge, though I didn’t recognize that I was being more than just a caregiver.   

I continued to volunteer in various ways to help the SCI Community locally and even started an online support group which now has 3.6k members. For a very short period of time, I also worked at a domestic violence shelter and cared for an elderly gentleman with dementia and chronic kidney disease until he went into memory care. I even began writing poetry again from time to time. Yet I still identified as a caregiver. I was not seeing the bigger picture.   

About two years after my son’s injury, I was approached to write caregiver articles for Bard. I was excited for this opportunity as it allowed me to pursue my love of writing. Finally, I was beginning to see myself as more than just a caregiver!  

Constant change in my life continued to throw me off balance and my heart broke when in March of 2016, when my daughter, her husband, and their two children moved 13 hours away from me. They had previously lived only an hour away and I often babysat my grandchildren until my son’s accident. Just when I was able to begin to interact with them more, they moved. Joyfully, in May of 2017, my oldest son and his wife who are local, had their first child and my third grandchild. I began babysitting again and I have loved every minute of it.

  

My son and I have lived separately for just over 1 ½ years but are very close as a result of taking this difficult and challenging journey together. I have undertaken other work related tasks with Bard and love the challenge! Even though I no longer identify myself as a caregiver for my son, I still help him and he knows I am always there for him any time day or night. But I really never was just a caregiver.   

So many caregivers I know are doing more than just caregiving even with the time and effort they have to put into doing it. Though I always saw caregiving as my most important job, it really is necessary to see yourself for ALL that you are. I am a mom, meme (grandma), daughter, girlfriend (yep – I have an incredible man in my life now), friend, writer, poet, advocate, salesperson, marketer, cyclist, kayaker, and much more. I was all along – I just didn’t realize it!   

Here are some tips to help you remember you are more than just a caregiver since you are:  

  1. Write a list of who you are by identifying your titles and interests. 
  2. Remember that not being paid does not lessen the importance of what you do. Many of us caregivers do so voluntarily as wages are often not available – especially if your loved has private insurance.  
  3. When asked what you do for a living, say you are a caregiver and ______. That space can be filled with as many titles as you want.  
  4. Re-engage in a hobby or activity you liked to do before becoming a caregiver or try something new.  
  5. Make time for yourself to pursue your interests. 
  6. Remember you are still (insert your name here). You are uniquely you!  

 Caroline

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