Advice for Caregivers of Spinal Cord Injury

Life after a spinal cord injury (SCI) often means a loss of independence for the injured person, and to function in everyday life, patients often need caregivers.  Caregivers assist with daily activities such as bathing, dressing, bladder management, and transportation.  Family members or friends who take on the role of caregiver after a loved one is injured often find themselves serving in many different roles -- supporter, teacher, supervisor, coach, and nurse.  The new caregiver, however, may have little or no preparation for the new demands of providing care for a seriously injured patient.  Because spinal cord injury patients have longer life expectancies than patients with other chronic diseases, such as AIDS or Alzheimer’s, SCI caregivers serve in that role for an indefinite period of time.

When selecting a paid caregiver, it is important to interview as many candidates as possible.  The hospital or rehabilitation center may be able to recommend a caregiver or nursing agency.  Newspaper ads and word of mouth recommendations can also help find the right paid caregiver.  Key qualities in a caregiver are reliability, flexibility, and friendliness.  Other factors to consider are the person’s experience with spinal cord injuries, whether they live nearby, transportation, and what other obligations they have (i.e., spouse, children).  Be sure to do a background check on the potential caregiver.  You can also ask the healthcare agency if they have performed background checks.

Caregiver Concerns

One research project found that caregivers for spinal cord injury patients see their problems as: the injured person’s negative attitude, guilt, feeling under appreciated, little time to pursue their own interests, having to tell the injured person “no,” and feeling overwhelmed.  The patients saw their problems as: wanting to walk, lack of sexual function, pain, bowel and bladder issues, finances, inability to do simple tasks, and anxiety.  The patient’s concerns can be very frustrating, and the caregiver is often the target of hostility because of this frustration.

It can be easy for caregivers to become so worried about their loved ones that they neglect their own health and well-being.  But if the caregiver gets sick or exhausted, their ability to care for the injured person decreases.  This results in more health problems for the patient, which leads to increased healthcare costs, and ultimately a worse situation for both the caregiver and the patient.  Caregivers should pay special attention to the amount of anxiety they experience, as this is the best indicator of overall health. 

Key Strategy – Caregivers should take care of themselves or risk increased complications for the injured person.

Caring for the Caregiver

There are several ways that caregivers can take care of themselves, and therefore take better care of their loved ones. Here are some tips for caregivers of spinal cord injured persons:

Manage Stress – Be aware of negative feelings and stress levels.  Once caregivers identify their stressors, they can work to alleviate them.

Stay Healthy – The physical health of the caregiver affects his feelings and ability to handle stressors.  Caring for a spinal cord injured person also presents unique problems.  The caregiver is engaging in more physical activity and coming into contact with bodily fluids and waste; this can increase the caregiver’s risk of infection.  Caregivers should take vitamins, wash their hands frequently, keep doctor’s appointments, eat nutritious meals, get adequate sleep, and find ways to relax.

Manage Your Time – Proper time management can lower stress levels.  Caregivers should put their own needs high on their “to do” lists.  Don’t be afraid to ask for help and share the work.  Keep a list of chores to give to friends and family who ask what they can do to help.

Manage Your Money – The high costs of a spinal cord injury can cause great financial stress.  Don’t ignore finances, though.  Keep them in order and recheck them periodically.

Educate Yourself – When the spinal cord injured person is in a hospital or rehabilitation center, learn from patient educators and medical personnel.  At home, check the library and the Internet for resources on spinal cord injuries and caregiving.

Ask for the Help You Need –  Caregivers should ask for help when they need it and express their feelings.  Don’t be afraid to ask for help. 

Develop a Support System – Caregivers should reach out to others and talk about their feelings.  Keeping a regular “coffee date” with a friend or going to church can reduce feelings of anxiety and isolation.  Support groups (in-person and online) are great ways to talk to other people who are going through similar experiences.

Here are some sites to help you get connected with a support community for caregivers:

Read the next article:  Legal Issues and Spinal Cord Injury 

Contact an attorney in your area.