When Your Loved One Is Paralyzed
Advocacy The author of "The Fearless Caregiver” and “Caregiving Ties that Bind” shares what he’s learned over the years, from Dana Reeve and other caregivers.
I fondly remember speaking with Dana Reeve for a cover story in Today’s Caregiver magazine in 1999, a few years after her husband, Christopher Reeve, was left paralyzed from the neck down from a riding accident. I still speak and write about the advice she shared with me to this day. Her insights into caregiving have never left me.
Since then, many family caregivers have shared their wisdom with us about the emotional challenges they face when caring for a loved one living with paralysis.
The initial steps
When the call comes with the diagnosis of a loved one’s paralysis, everyone in the family has to adjust to their new reality. Shock and disbelief can be expected, and both the caregiver and their loved one can go through a variety of emotional stages, including grief, anger, depression and denial. It is important to the mental health of all family members that you seek appropriate help dealing with these emotions.
You can seek support from local counseling professionals and support groups. Organizations like Christopher and Dana Reeve Foundation and the American Paralysis Association also contain a wealth of information available on their websites.
“We caregivers must be sure we are also caring for our own emotional health.”
To help combat the emotional challenges faced by our loved ones, there are things a caregiver can do. First, be candid about talking about your feelings as well as theirs. Maintain active conversations about family, friends, plans, etc. Help a loved one keep an interest in the world around them, whether through personal relationships or world and local news. Having a sense of what is going on around them while they are in the first stages of paralysis and treatment will help maintain optimism and interest and reduce the feelings of loss and disconnection.
You can also encourage visitors to do the same — talk openly about the obvious “elephant in the room,” but also about their lives, mutual interests, friends and community happenings. Laughter is healthy, as is taking a loved one’s mind off of themselves and the difficulty surrounding their situation.
Self-care and new answers
At the same time, we caregivers must be sure we are also caring for our own emotional health. Keep reminding yourself that you need to take a little time off, find a way to relieve your daily stress and seek out support from other caregivers who understand what you are going through.
For many decades, it was thought that spinal cord injuries were incurable. Today, advances are being made in research to restore sensation to nerves and muscles damaged by accidents, stokes and chronic diseases. The question is not whether major breakthroughs in treatment will occur, but rather how quickly they will be realized. For caregivers caring for those living with paralysis and their families, the future is one of hope of recovery.