A world of resources -- online support groups, how-to guides, specialist psychotherapists, and sympathetic providers -- is focused on caring for spinal cord injury (SCI) survivors. Adjusting to life with a spinal cord injury is logistically, emotionally, and physically challenging. Yet in the journey from accident to survival, and from surviving to thriving, one important figure is often neglected: the caregiver.
Spinal cord injury caregivers face a number of challenges, from financial stress to the exhaustion of providing for another person's needs. If you're like most caregivers, you're probably caring for a spouse or child. This comes with an additional set of challenges: grieving the person you lost without guilt, finding new ways to complete the tasks with which your loved one once helped, dealing with the conflicts inherent in every relationship without using the caregiver power imbalance to your advantage or your loved one's detriment, seeing your loved one as more than just a patient. The list of delicate balancing acts you must complete each day can feel endless.
It's no wonder that so many caregivers find themselves in need of care that feels out of reach. Caregivers are at a heightened risk of depression, anxiety, and even suicidal thoughts. These challenging feelings can increase your vulnerability to physical issues, too, producing headaches, causing you to get sick more often, and even leading to chronic pain. Caregivers need care, too, so here's how to access the resources you need.
When your loved one can't move without help, struggles with intense pain, or has recently recovered from weeks in the intensive care unit, it's easy to see your own problems as trivial. They aren't. Your health matters, even if your loved one faces more dire health challenges. You cannot care for your loved one if you can't care for yourself, and your loved one's injury should not deprive you of your right to live a happy, healthy life.
Don't let guilt get in the way of seeking the resources you need. Once you recognize that your health matters, too, accessing help will feel like a right—not something to feel guilty about.
If you're anxious about leaving your loved one alone or feel uncomfortable sharing your feelings with strangers, consider joining an online support group. Message boards, Facebook groups, and caregiver websites draw on the wisdom of thousands, and sometimes even millions, of caregivers, to give you a sympathetic ear whenever you need it. Many caregivers find that online support groups offer much more help than doctors or even psychotherapy, so don't be afraid to pour your heart out and see what you get in return.
There's no substitute for human touch, so if your online support group just isn't cutting it, try joining an in-person support group where you can get a hug from a sympathetic group member. If you need help accessing a support group, try asking your therapist or your loved one's doctor to put you in touch with a local group. Any support group can help, but one that works specifically with SCI survivors and their families may prove especially helpful.
It's easy to see your loved one's injury as so large that it eclipses the person he or she used to be. Your loved one is still in there. And he or she is still responsible for his or her feelings, treatment of you, and daily life. Don't allow the injury to become an excuse for your loved one to abuse you. You might be the caregiver, but you should still have an emotionally equal relationship. Talk openly and honestly with your loved one about issues that concern you, and if you continue having relationship difficulties, consider pursuing therapy together.
Psychotherapy can do wonders for your mental health. Your therapist will work with you to help you voice your concerns about caregiving without fear of judgment. He or she can also help you craft a practical plan for managing your duties without losing your mind. And if your relationship with the loved one for whom you care is strained, your therapist can help you set clear boundaries while still remaining a competent and loving caregiver.
It's easy to get caught up in the mundane realities of caregiving. You may eventually find that you're not eating or sleeping well, spending little time away from your loved one, and perhaps feeling worse than you ever have.
Your health still matters. If you can't accept that your health is valuable in its own right, then at least know that you cannot be an excellent caregiver if you are in poor health. Talk to your own doctor about what you can do to remain healthy as you navigate the challenges of caregiving.
Eat healthy, balanced meals; they're not a luxury, and they can sustain you through the trials of caregiving. Just 30 minutes of exercise each day can make a huge difference, reducing your risk of an array of health problems and helping to alleviate depression, anxiety, and stress.
Many caregivers operate according to an unwritten rule: when a loved one is injured, they must give up all sources of pleasure. This is a recipe for misery for both you and your loved one. You deserve and need time to yourself. Take at least 30 minutes each day to do something you love—whether it's reading a good book, catching up with your best friend, or playing with your dog. When life is full of stress and drudgery, a few moments spent enjoying yourself can help you keep going.
You do not have to care for your loved one alone. Ideally, friends and family might be willing to help out a few hours each week, but not everyone is lucky enough to have such giving people in their lives. If you can't get help from the people who love you, it's time to consider hiring some help so you can get out of the house.
Even if it's only for an hour each week, a quick break can do wonders for your mental health. Insurance often pays for in-home care. You might also consider going out for a while when your loved one undergoes physical therapy or meets with the doctor. Find a way to get some time alone, and you may soon find that your life feels bigger and much more fulfilling.