Caregiver Support Resources
Caregivers are very important to people with spinal cord injuries (SCI). We talked to people who help those with SCI, and they told us that caregivers can feel a lot of stress in their body, feelings, and mind when helping someone with SCI and also taking care of their own needs and other obligations.
Taking care of someone can make caregivers feel very tired and stressed, which can lead to burnout and lower quality of life. It's really important to see when a caregiver is feeling stressed and to help them as it helps both the caregiver and the person they are helping stay well. Luckily, there are some great places to find help for caregivers of people with SCI. We've put a few of them here to help you start.
Consider setting a routine to feel less overwhelmed and remember to take one step at a time.
Self-care for support persons is important. One support person said he has one night he spends with family, where “my aunts make food and we play poker together . . .” Setting a regular time to take care of yourself can encourage you to get through the week.
Caregiving for People with SCI
Looking after someone with a spinal cord injury (SCI) is a very big job, and it's super important for caregivers to get the right training. This is because people with SCI have many complex needs, and things can go wrong if care isn't done right. An SCI can affect almost every part of the body. So, caregivers need to know special things, like: how to take care of skin so they don't get pressure sores (bedsores), how to help with bowel and bladder care to stop infections and other problems, how to safely move and position the person to avoid hurting them, and how to spot signs of serious problems like autonomic dysreflexia or other medical emergencies.
If caregivers don't get enough training, they might accidentally hurt the person or not know what to do when something serious happens. This can make the person with SCI less healthy, less safe, and lower quality of life. Good caregiving doesn't just help the person with SCI stay healthy and happy. It also helps the caregiver feel more confident and less stressed. This makes the caring relationship better and easier to keep up for a long time.
Consider setting a routine to feel less overwhelmed and remember to take one step at a time.
Self-care for support persons is important. One support person said he has one night he spends with family, where “my aunts make food and we play poker together . . .” Setting a regular time to take care of yourself can encourage you to get through the week.
Quotes from our study about caregiver overwhelm:
"I'm just a 24-hour caregiver. So just trying to get people to do what they're supposed to do, and it's probably not the best situation and I don't know how to get out of it."
"Yeah. Because sometimes I feel like all the things that we used to do together, like him taking care of the lawn or the leaves, or something breaks, now it's like, "I saw a need. Either do it, or find someone to do it." Sometimes that gets overwhelming."
"So, I mean, there's a lot of big things going on, but just over the course of this year, it's mentally wearing and there's times where I'm just frustrated. It's like, "Oh, God. I don't want to do anything else with him today. Not today," but you still have to force yourself. You got to go do it because sometimes he can't."
"I guess I'm okay. Other than sleep deprived. I'm okay. I have to be, so I am."