While facilitating a self-help group for caregivers years ago, one group member whom I’ll call Gladys, was an elderly mother of an adult son who had Multiple Sclerosis. She cooked for him, did his laundry and almost everything else. Gladys told us that she rarely left the house for more than an hour or two because she felt she needed to be there at all times for her disabled son who used a wheelchair to get around. What if he fell? What if he needed something? What if he had a medical emergency? She told the group that a family wedding was coming up that she wanted to attend. But it would necessitate her being away from home for an entire weekend – something she hadn’t done since her son become disabled many years ago and was fearful to do now.
The group encouraged Gladys to arrange for a friend or church member to look in on her son (or even stay with him if necessary) while she was gone. We stressed how important her own respite care was and the importance of not isolating herself from her larger family, outside activities etc. Her son insisted that he would be fine on his own and had neighbors and friends that he could rely on if he needed anything. She reluctantly agreed to attend the wedding but insisted on preparing all of her son’s meals before she left, carefully packaging and labeling each one.
When we next saw her, after the wedding, Gladys seemed agitated. We asked if her son made out alright in her absence. She stated that she was furious because he had not eaten even one meal that she prepared for him – all that work! We asked what he had done for food or if he had even eaten while she was gone. She curtly told us that he had eaten – he just fixed things for himself and disregarded what she had prepared. The end result is that he was just fine on his own for the weekend and Gladys had to confront the fact that she wasn’t quite as indispensable in her son’s life as she had previously thought. And what she may not have realized, is that she gave her son the gift of being independent for the weekend and fending for himself rather than fostering complete dependence on her. As a group, we then explored the concept of wrapping our identify around our role as caregiver and not letting those in our charge be as independent as they might otherwise be. Some of us do that as parents of able-bodied children, too.
I have since learned, from my own experience and through self-study, that this type of “extreme caregiving” is sometimes a way of feeling self-important, creating an identity, and even an excuse to avoid confronting one’s own issues. In other words, some of us use it as a coping mechanism. Some people overeat, drink or exercise too much, while others focus all their time and energy on caregiving – whether as a parent or as a care partner to a sick, elderly or disabled loved one — to the exclusion of much else in their lives.
Lessons: Don’t get so consumed by caring for others that you lose yourself in the process and lose perspective on what your role really is. Sometimes it’s easier to play the martyr than it is to seek help or just allow your charge to make some of their own decisions and do things their way even if their way is imperfect in your eyes. You have to create and maintain your own life outside of caregiving. This serves both you as the caregiver and the ones you care for. And remember that caring for yourself is an important part of the equation.
