Tips and Coping Strategies for Friends, Family and the Patient

Rehabilitation from a spinal cord injury is a long and arduous process, from the emergency department through the rehabilitation facility and back to home.  Everyone has his or her unique experience around the spinal cord injury and recovery.  You need to know that you don’t have to be alone in this and there are excellent coping strategies that help you and your family get through the many days and weeks that follow such a traumatic, multi-generational event.
 
There are several tips you can follow in order to respond better to a spinal cord injury.  For example, the patient’s family needs to be intricately involved in the patient’s care.  This helps the patient feel as though they are not alone in their recovery and they cope better when compared to those who have families that are not supportive.  Family members, in fact, must carry a great burden, not just because of finances and the shock of the injury, but because they must be completely supportive of the injured patient so that they can understand that it takes more than just the individual patient to recover from this type of catastrophic injury.
 
Some tips family members and patients can use to help the process move toward recovery include the following:

• Set up an answering machine in your home that provides those calling about the individual with regular updates as to how they are doing.  This cuts down on multiple calls and having some family members begin to feel out of the loop during the recovery.
• Keep phone numbers of loved ones, doctors, and the patient’s hospital room handy in your smart phone or just taped up somewhere so they can easily be  accessed when needed.
• Have a designated family member ready to field questions from others who want to know the progress of the patient’s recovery.  This person must shoulder the burden of knowing what is going on with the patient at all times in order to be prepared to answer questions.
• Delegate duties to willing family members and friends.  Those people can help with household chores, meal-making and other simple tasks that will free up close family to be with the patient as much as possible.
• Coordinate your life so that you can have a routine and a better balance between being with the patient and getting your personal stuff taken care of.  A schedule can be made up and shared with the patient and family members so that everyone is on board with who needs to do what and when it needs to be done.
• Think about going to support groups for patients and families going through spinal cord injuries.  These groups can be extremely helpful when dealing with the acute and chronic issues that come up throughout the recovery process.
• Photograph the patients (or take videos) as they recover so that the patient, family, and friends can see objectively that the patient is getting better. 
• Bring in photos from home or drawings from the patient’s children to cheer up an otherwise dreary hospital or rehab room.  Make sure your injured loved one has access to writing materials and a means of keeping all notes and summaries in a neat folder.
• Give the patient a CD player with his or her favorite songs or with books on tape.  These are things that can distract a patient and keep them happier in the long hours between therapy sessions or when therapy has not yet started.
• Buy simple, elastic, stretchable clothing that is larger than what the patient normally wears.  This can help the nurses dress the patient more easily and are more comfortable for the injured patient to wear.
• Ask the staff if a dog can visit the patient at the hospital, if the patient has a dog. Because of the long stay of many of these patients, a visit from their dog can cheer them up and enhance the recovery process.
• Family members should not ‘fall apart’ in front of the patient who is recovering from spinal cord trauma.  Save these kinds of negative feelings for other family members to witness and not the patient.
• Keep the injured patient ‘in the loop’ when it comes to things like family decision-making and bill paying.  Bring in your families mail, including bills, and, if the patient is the family member who usually did the bills, have them continue to be involved in this process.
• Talk to the care manager about any type of social services that are available for family members and the injured patient.  Do this early in the patient’s recovery so they can have something to hold onto during the initial difficult days and weeks. Support groups can be particularly helpful.
• Think about the practicalities of your home and automobile when it comes to taking the patient home.  Is the home disability-friendly without steps or stairs to climb? Do you have a small two door coupe that will make it impossible or at least very difficult for the patient to get into and out of when transferring to home?  Try not to do everything at once but thinking about the needs of the future will keep you prepared to handle the days, weeks, months, and years ahead.

Adaptation to a person’s spinal cord injury can be overwhelming and may take several months or years to become completely adapted to the situation.  Eventually, the patient cannot imagine what life was like before their injury. The routines of a disabled person gradually get incorporated into the patient’s daily life and this becomes the ‘new normal’.