What SCI Family Caregivers Need to Know

November 17, 2015

It’s been one year since President Obama declared November National Family Caregivers Month to, “salute the people who care for their loved ones while protecting their dignity and individuality.”

Family.CaregiverWith a spinal cord injury (SCI), it’s often a family member who takes over the caregiving when a person leaves the hospital. It’s a big life-change for everyone. The individual is no longer a patient, yet often has urgent medical needs that are not going away any time soon — if ever. Life for the newly paralyzed person has changed so much that they need someone around who knows just as much about their heart as their injury. Sometimes, a family member is the only one who can take on the role.

SCI caregiving has difficulties of its own. And while they vary with the individual, here is a useful summary, put together by the National Caregivers Library, of the emotions commonly experienced after spinal cord injury:


  • Feelings of dependency may cause your loved one to withdraw; the idea of losing even the smallest bit of autonomy can be almost intolerable.
  • He or she may think they’ve become a burden to you and others. They may feel they’re pulling everybody down, and the family would be better off without them.
  • They may struggle with a newly negative self-image, a loss of self-esteem, a strong fear of neglect — all of which may lead to acting out in anger.
  • Embarrassment, even shame, can accompany their new physical changes.

Helping a loved-one through the process of grief, anger, and acceptance demands a great deal from a family member – often far too much to try to deal with alone. Family caregivers can eventually hit a wall. It’s called caregiver burnout. Here are some ways to avoid it:

  • Keep the whole family involved and informed. Share basic medical and clinical information to clear up any preconceptions or misconceptions other family members may have.
  • Encourage your loved one to join a support group, and seek one out for yourself.
  • Look after your own health by exercising and eating properly.
  • Don’t put yourself at risk. Get help with the toughest, most physically demanding jobs.
  • Keep up to date on rehabilitation and maintain a regular schedule of doctor’s appointments and evaluations – even if nothing has changed or progress has been minimal.
  • If finances are available, consider getting additional help. Even part-time personal assistance can make a big difference.
  • Focus on what the person can do instead of what they can’t. Allow them to exert as much independence as they can, and don’t do anything for them they can do for themselves.
  • It’s important to stay in regular contact with friends, to have visitors, and to make visits. Make the extra effort to cultivate new relationships, and don’t let the old ones slip away.
  • Take advantage of respite care. That means setting aside time to go out and just be alone. You need to take care of your own life.

Read more about caregiver coping strategies and information at the National Caregivers Library.


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