Your spouse, parent or child is suddenly faced with the life altering reality of a Spinal Cord Injury (SCI). You feel overwhelmed, sad and afraid, but your focus is on supporting your loved one, not thinking about your own well being.
Burke embraces family members and caregivers of SCI patients as essential partners in the process of rehabilitation. Caring about the caregivers is a high priority.
Here are five key tips for family members new to the SCI experience:
- Seek out and absorb accurate, valid information, and learn the language of spinal cord injury. This will help you ask questions of the professionals on your loved one’s team, including doctors and therapists. A good place to begin is with Spinal Cord Injury Model System (SCIMS), which is sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR). It is a compilation of the knowledge and experience of many SCI research and treatment centers across the U.S.
- Take advantage of the myriad resources Burke provides to learn and share. There are outpatient caregiver groups, inpatient health and wellness sessions, and support groups. You can gather practical information--from what kinds of wheelchairs are best, to what changes need to be made at home. You can also share your concerns and vulnerability with others who are going through the same experience.
- Learn from more experienced SCI caregivers how they navigated through the waters where you are now, and let them guide you through the stages and challenges to come.The Christopher & Dana Reeve Foundation, for example, is a welcoming online community for caregivers. After her husband sustained a spinal cord injury, Dana Reeve devoted herself not only to her husband’s care, but also to providing resources for others. In an open letter on the website www.christopherreeve.org, she wrote to caregivers “Please know that you are not alone, that you are extremely valuable, and that you and your family can lead active, fulfilling lives despite the challenges of paralysis. Don't ever be embarrassed to ask our Paralysis Resource Center for assistance.”
- Accept that you have limitations and open yourself to learning about resources to help you do what you cannot. If you are aware of what help is available, you can reach out when the time is right.
- Take a deep breath, and take breaks from your responsibility long enough to recharge your own batteries. Your loved one is safe in rehab, and there is time to learn about what to do when he or she goes home. Yes, your role has changed from what it was, but you cannot be an effective caregiver if you burnout from neglecting your own needs. It’s not only OK to go to your yoga class, or meet a friend for dinner; it’s essential to retaining your mental and physical health.
-- Carol Vartuli