Caregiving should not be a journey you face alone. I found initially the best way for me to feel less alone, and with people who understood me, was to join a spinal cord injury (SCI) support group online. I stayed hidden in that group for months and tried to stay away from my Facebook news feed. My heart just ached too much at the time to be able view all the fun times and family togetherness that my Facebook friends were enjoying.
But as a caregiver, I found myself only discussing issues that related to caring for my son and did not talk about me –the caregiver. The last thing a caregiver wants to do is share their difficulties in a mixed group. Fortunately, another caregiver in the group decided to start an online support group for SCI Caregivers and I immediately got on board with helping her to get it up and running. There were no caregiver groups that specialized in SCI caregiving at that time. It was amazing to connect with others who could so relate to what I was going through and offer support. I then began to join other caregiver groups as I knew that even though our situations were different there is the ‘heart of a caregiver’ that connects us all. We just get each other.
Eventually, I decided to give back to the SCI Community and I created my own online support group that is almost 2,000 members strong. It helped me get my eyes off of my own struggles and help others who were not only looking for support but wanted to offer it as well. I now have another admin helping me. We have developed a very close friendship and talk regularly on the phone. We have yet to meet in person due to the distance but plan on doing so in the near future.
While online support is extremely valuable it is also important, though often difficult, to create support where others can physically assist you. I know many caregivers struggle with the lack of family and friends who can lend a helping hand. My son, fortunately, has always had many supportive friends but I did go through a time where I felt very much alone. I am very grateful for my best friend though who has been by my side the entire time. She has been a real lifeline for me. Sadly, other friends who I was close with before my son’s accident either disappeared or I saw very little of them. Change is inevitable when a catastrophic injury or serious illness turns your life upside down. You have to cope with loss in many different areas of your life. Thankfully, friends I had not seen in many years began to reconnect with me and provided invaluable and much needed friendship and support.
We also have a strong SCI Community where I live. My son and I became involved with the local SCI support group and an adaptive sports organization shortly after he came home from inpatient rehabilitation. It really helped both of us transition into our “new normal”. But as my son became more independent and increasingly more involved with these organizations, I decided to give him his space and lessened my own involvement.
I also signed up for a bi-monthly meeting for caregivers at a local church. However, I have not been able to attend any meetings because of other obligations. Yet it’s nice to know they are there if I need the additional support.
Becoming one of BARD’s contributors has been a real blessing as well. We are not just a team at BARD –we are family. BARD is truly a company that cares and the Bard community is one way they provide support to those who need it.
The support that I have established in my life definitely took some time and effort. It did not happen overnight. But it has helped me to come a long way in the past three years. If you need support, don’t stop trying to find it. Explore as many avenues as possible.
- Join as many online support groups as you need.
- Establish friendships online and possibly connect with other caregivers over the phone.
- If possible, meet up with caregivers that are local in your area.
- Find those friends who are willing to help and stay in contact with them.
- Join local support groups and attend their meetings and events.
- Become part of the BARD Community for more stories on caregiving, SCI, MS and Spina Bifida.
I know when life is full with caregiving duties and other responsibilities; it can be so hard to make the effort to connect with others and try to form new relationships. But it will ultimately be worth it. You are worth it. We are all in this together. You are never alone!
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The opinions and experiences presented herein are for informational use only. Individual results may vary depending on your condition. Always consult with your health care professional. This individual has been compensated by Bard Medical for the time and effort in preparing this article for BARD’s further use and distribution. BMD/BMDA/0118/0589