By Heather Nadler, CELA, Tucker, GA
Caregiver burnout is a destructive syndrome. Individuals become so involved with the ongoing needs of a loved one with disabilities that they neglect their own well-being. By placing unreasonable and unrelenting demands on themselves, they descend into a state of emotional and physical exhaustion. Their complete focus on the individual needing care isolates them, and they become anxious, depressed, irritable and easily distracted. They may have difficulty sleeping, experience changes in appetite and fall ill more frequently.
This downward spiral affects the rest of the family, as well. Siblings of the individual being cared for may become resentful. Marriages may suffer. Even their relationship with the person they’re caring for and the quality of that care may deteriorate as fatigue results in their “going through the motions” of daily responsibilities.
What to do
To fight burnout, it’s important to realize is that “it takes a village” to care for a person with special needs, and you are not alone. Set realistic goals for yourself, ask for help, then be willing to accept it. Share responsibilities – including housework and meal preparation – with other family members and make a point of spending time alone with other loved ones.
Don’t neglect your own health. Eat properly, exercise and be sure to get enough sleep. Recognize and accept your emotions, which will probably include frustration and anger. If you’re experiencing depression, seek medical help.
The special needs community is tight-knit and highly supportive. Other caregivers will understand the pressure you’re under as no one else can and can be a source of invaluable information concerning helpful community resources. Research local social services and the chapters of disability organizations, which may offer respite, home health aides, support groups, and a wealth of programs designed to serve individuals with special needs.
Remember that taking “time off” is good for you, the person for whom you’re caring, and the rest of the family. Having others interact with your loved one reassures them that they have a network of supportive individuals on whom they can depend. Involving them in activities that give you free time can give them opportunities to develop friendships and social interests they’ll look forward to with pleasure. Remember that you can use funds from a special needs trust (SNT) for anything the helps the beneficiary—such as day care, cultural activities and summer camp.
With moderation, outreach and planning, you can avoid the damaging effects of burnout. When you “care for the caregiver,” everyone benefits.