From years of caregiving and from talking with and working with other caregivers, here are some things I have learned along the way.
Truth #1: YOU CAN TRUST YOURSELF Many well-intentioned people will feel free to tell you that you are doing too much/too little/everything all wrong. If the message comes from someone you trust, then listen to the feedback and evaluate it. They may be holding up a mirror to something you hadn’t seen. If it is not a trust-worthy source, you don’t have to listen or defend. “Thank you for your concern” can go a long way.
Truth #2: YOU DON’T HAVE TO BE PERFECT We can only do the best we can, and nobody bats 1000. That means sometimes really bad things happen, and it is not our fault. As caregivers, we often expect more from ourselves than is humanly possible. As one caregiver said, “That’s when I put on my Super Woman costume,” as if she could control the uncontrollable.
Truth #3: HUMAN BEINGS ARE NOT MACHINES We need to eat healthful food, sleep, have respites, exercise, and be social. If we don’t, our own capacities break down. In order to take care of our loved ones, we must take care of ourselves.
Truth #4: THE PERSON YOU ARE TAKING CARE OF DOESN’T GET TO MAKE ALL THE DECISIONS Jennifer knew she needed a break. She was too exhausted to give her husband, who has ALS, proper care. But she is his security and she was afraid he’d be upset if she took a night away to get some sleep.
Maria’s husband, who has MS, insisted that the family take a trip to a foreign country in the middle of summer. MS is a disease in which exposure to heat can cause extreme muscle weakness and life-threatening complications, and he “would not allow” her to take the larger, more obvious wheelchair that would give him better physical support. She felt helpless.
Both of these smart women were willing to acquiesce in order to please to give their husbands a sense of control. See Truth #1. Jen took her respite; Maria took the wheelchair. Both were glad they did.
Truth #5: YOU DON’T HAVE TO DO IT ALL BY YOURSELF. It is critical to find ways to both ask for and accept help. Practice saying “yes” when friends and family offer. Try www.LotsaHelpingHands.com to organize that help. Local and on-line support groups are available. It helps to know you are not alone. Check out www.caring.com for resources and ideas.