by Elissa Lewin~It starts as an ordinary day. You get ready for work, get the kids to school, try to remember what errands have to get done before getting home, preparing dinner, supervising homework. Then, your phone rings. You don’t even know it yet, but your life has just changed.
Most of us like to feel that we are in control of our lives, of what is going on. We make our plans and expect to be able to carry them out. That phone call, or doctor’s visit , or a moment of inattention suddenly changes everything – our sense of control, our competence, our expectations for the future. “Your mother has fallen”, “There’s been a car accident”, “I have cancer.” Suddenly, you’re a caregiver.
Deborah Cornwall, author of Things I Wish I’d Known: Cancer caregivers speak out, wrote an article for CNN based on interviews with 86 cancer caregivers. Ms. Cornwall described responses in that moment of getting the diagnosis as “a crisis of control.” “Like being dumped at sea” was a common description. We quickly learn just what we can and cannot control, and, initially, we may flail a bit.
So, what are the things you cannot control? First, is whatever led up to this moment. Feelings of guilt and regret for actions taken or not taken are common. “If only I had (or hadn’t) done ______, this would never have happened.” Similarly, using those same kinds of remarks about the person who is now ill (e.g. “I told him not to…..”) have the same result.
Statements like these are an attempt to feel that we could influence or control an outcome that has already happened. At best, these are a distraction from the situation at hand. At worst, they are guilt-inducing and paralyzing. At a time when you are still in shock and feelings are raw, guilt, blame and anger are particularly damaging and counter-productive.
You also cannot control a lot about the course of events to follow, whether it is emergency surgery or long-term rehabilitation. We can do our best to screen providers, but in crisis situations most of that is out of our control. You get whoever is available and trust they will do their best for your loved one.
What we can control is our care for ourselves and the subsequent decisions we make for our loved one. A boss that I once had taught me, “You make the best decision you can with the information you have available at the time. Then you move on.” In order to make good decisions, you need to be in the best cognitive condition possible, and you need to accept you might not have all the information.
As with other caregiving moments, you are at your best when you take care of yourself. Take the time to eat nourishing food. Your loved one is not going to get better because you are living on vending machine pretzels and coffee.
Take the time to rest. If you are in the Emergency Room, catch short naps while your loved one is going through tests or is napping. Some hospitals even have rooms where family members can nap. Ask your nurse. If you can’t sleep, then use that time to close your eyes and focus on your breathing. Keep it slow, deep and even. This is a basic meditation technique. Deep belly breathing is also a relaxation technique.
Take two minutes to stand in as large a posture as you can – hands on hips like Wonder Woman or arms up like a marathon winner. Work by Dr. Amy Cuddy of the Harvard Business School suggests that just two minutes in one of these poses can help drop cortisol levels and increase self-confidence. Both are important for the new caregiver dealing with a crisis. (You can hear her speak about this on TedTalks – Season 2, Episode 1.)
Be sure you have someone with you who will listen, without judgment, to your feelings. Don’t try to handle the crisis by yourself. You need support, and an extra set of ears can be helpful to catch pieces you might miss.
Use websites like CaringBridge.org to keep large numbers of people in the loop. It will spare you making a bazillion phone calls and repeating the story over and over, thus re-traumatizing yourself.
A useful article for what you need to do when you are suddenly a caregiver is “Quick Start Caregiving at http://www.caringpartnersde.org/2.html. It will help you step into that caregiving role with a list of to-do’s.
The Serenity Prayer is a great guide for caregivers. As caregivers we need “… serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” It’s a useful guide when you suddenly become a caregiver.