Caring for a Loved One With a Spinal Cord Injury

Helping a loved one with a spinal cord injury improve the quality of their life is valuable work, but can also be stressful. Explore some keys to easing your caregiving burden. 

Explore tips for caring for a loved one with a spinal cord injury.

Being a caregiver for a spouse, parent, child, or other loved one with a spinal cord injury is a role that can be time-consuming, frustrating, and overwhelming. Caregiving requires significant effort and major life changes. 

Yet, caregiving can be rewarding too. Fulfilling your commitment to a loved one and selflessly devoting your time to improving their life can be a gratifying experience.

Of course, not everyone chooses to be a caregiver – sometimes the role chooses you. That simple fact can make you feel a loss of control. The good news is that there are many aspects of caregiving you can control.

It takes a village 

Over 43.5 million people in the U.S.  provide some level of care to an adult or child with a disabling condition or illness. The majority of these caregivers (85 percent) are a relative or loved one. Ironically, even with so many caregivers out there, many report feeling alone and isolated as they go about fulfilling their daily duties. Up to 70 percent of caregivers also report depression.

As you embark on the caregiving journey, it’s vital to pull together a team to assist you in several key areas, such as medical care, health insurance, and even driving. Getting others involved – along with the social interaction – may also keep you from feeling feel alone. Your team may include: 

• Healthcare professionals, including an occupational therapist (OT) that can help you get your loved one’s home ready with mobility modifications and other daily living aids. (Please note: access to an OT may depend on your healthcare coverage.) 
• Other family members or friends willing to offer their time, money, skills, or other resources
• Specialized consultants in assistive equipment or technologies. For example, adaptive driving specialists can help choose the right vehicle and equipment if your loved one is able to drive
• Experts in health insurance, Medicare, Social Security, and personal finances that can help you navigate financial challenges, as well as make the most out of assistive programs
• Caregiving organizations and information resources (see list below)

Take care of yourself

Airline flight safety instructions always include a key point about using oxygen masks should the cabin depressurize – you need to take care of yourself first before you help another. That’s an apt analogy if you’re a caregiver. 

Attempting to be a caregiver while still managing the other parts of your life can quickly lead to burn out if you don’t make your own wellbeing a top priority. Consider these practical tips to help you maintain good physical and emotional health: 

• Get support from other caregivers: Several of the resources listed below offer caregiver forums where you can reach out and learn from others in your situation. Online support groups can be very helpful too.
• Maintain a healthy lifestyle: Exercise, healthy eating, adequate sleep, and regular physician check-ups will ensure that you’re at your best. Stress can cause some to turn to alcohol or smoking. Physical activity, yoga, or a massage are healthier stress-busting options.
• Schedule downtime: An extended vacation may not be an option, but short outings such as a movie with a friend, or dinner at a new restaurant, will help recharge your batteries. Shorter “me-time” breaks during the day – a favorite TV show, magazine, or book – are essential too.  
• Seek professional help if you need it: Caregiving can be emotionally draining at times. That’s especially true early on, when your loved one may feel intensely angry and frustrated. Monitor yourself for signs of depression. Seek help from a professional therapist immediately if needed.

Caregiver resources

Above all, realize that you are not alone. There are many caregiver-focused organizations with support programs, as well as magazines and libraries that are great sources of additional information. 

Family Caregiver Alliance (FCA)

Christopher & Dana Reeve Foundation

Caregiver Action Network

Well Spouse Association

Caregiver Media Group

National Caregivers Library