Focus on what you can do, appreciate what you have, and believe that the future can be better.
We say we feel “paralyzed” when we can’t decide what to do or how to take action. Imagine then the state of mind of people who have lost the use of part of their bodies.
But even in the beginning, that state of mind doesn’t have to dominate every minute of the day, and over time, may go. As a caregiver, you can help people with paralysis not feel “paralyzed.” All of us need to focus on what we can do, appreciate what we have, and believe that the future can be better. We feel best when we’re inspired by the people around us — and feel that we are inspiring others. People with paralysis can inspire everyone around them with their courage.
As a caregiver, you will be inspiring, too. It may be a difficult task, physically and emotionally. It can be enormously satisfying, but some days may seem all work and no reward. Often those are the days when you feel isolated — be aware of community and public resources and don’t be reluctant to seek or accept help.
You or the person you are caring for can get free one-on-one support from someone who is living and thriving with paralysis (or another caregiver). Peer mentors have at least a year’s experience, are upbeat, will keep your confidences private, avoid advice and judgments, and help you find community resources. You can decide how often to talk or meet and the subject. You might want information: How do you choose the right rehab center? What is a physiatrist? What's the difference between an occupational therapist and a physical therapist? As a caregiver you might want to talk about feeling overwhelmed or guilty that you can’t help more. A tall person who can no longer stand might want to talk about how it feels to have a brother or son tower over him.
The Christopher and Dana Reeve Foundation will look for a match. When pairing those with paralysis, it might match two military veterans with similar injuries, for example. It’s possible to connect by phone, email, text, or video chat, as well as in person. One day, you and your loved one may choose to become mentors yourselves.
Nearly three quarters of Americans with some type of paralysis are under the age of 60 and have many years ahead when they will need to be as self-sufficient as possible, according to research requested by the Foundation. In fact, among Americans with a spinal cord injury, some 1.275 million people, the average length of time since the spinal cord injury occurred was 14 years. Just over half had suffered an accident at work or in a car. Strokes and multiple sclerosis also cause paralysis.
Life-changing medical advances are always possible. For example, in 2014, four young men who had been unable to move their legs since spinal cord injuries two to four years earlier did so after a procedure called epidural electrical stimulation.
Also, new devices called “exoskeletons,” battery-powered “legs” with small motors on the joints that combine braces, computer controls, and motion sensors are coming on the market; in 2014 the Food and Drug Administration approved the ReWalk Personal System for people living with paraplegia. Watch for new products from Cyberdyne, Ekso Bionics, and Indego,
As a caregiver, allow yourself the time you need to rest, recharge, or take care of other obligations. You can find respite services that will take over the job (and you may find your loved one is grateful that you’re taking care of yourself, too).
Resources for people caring for someone who is paralyzed
- Spinal Cord Injury Caregivers is a Yahoo forum to share information and to support other caregivers of people with spinal cord injuries.
- Paralysis Resource Center at the Christopher and Dana Reeve Foundation offers a wide variety of resources, including the peer mentor program, a lending library, a hotline for suicide prevention at 866-697-8394, and a toll-free number for information at 800-539-7309 from 9:00 a.m. to 5 p.m. EST. International callers: use 973-467-8270. You may also schedule a call or send a message online.
General resources for caregivers
April 04, 2016
Janet O’Dell, RN