Living in the War Zone. Where’s My System? Where Are My People?
I am thinking a lot these days about how to help family caregivers. I believe we have an incredible opportunity to find a level of happiness that most people will never experience because they don’t face the level of daily stress we deal with. It’s precisely these daily challenges that actually give us an opportunity to practice altering our thought patterns. In Ellen McGrath’s article, Recovering From Trauma, she writes, “In the wake of crisis it is possible to learn and grow at rates 100 times faster than at any other time, because there is a door of opportunity. Growth can go at warp speed in every domain of life.”
In the early stage, the trauma manifests itself in multiple ways but from a physical perspective she writes, “The juice turns off. Intellectually, you lose from 50 to 90 percent of brain capacity…. Physically all your systems shut down and you run on basics.” I remember this phase very well. It wasn’t that I was running around ragged, I just remember this feeling that there was something huge that I had to manage, an overwhelming sense of responsibility and a great deal of confusion regarding my daughter’s condition. Finding the right therapists. Frequent tears. Finding myself in situations I never imagined. Managing people’s emotions or being equally frustrated with my family’s inability to support me. Feeling as if I no longer belonged to my group of friends or any kind of social situation that required me to be happy. At the same time, the caregiving piece wasn’t just taking care of Leia, I was still being required to take care of everyone else too.
At some point I started to go to therapy. I believe therapy was helpful primarily as an outlet for my feelings and interestingly, many of them had nothing to do with my daughter. It was everything else around me that was so painful. At some point, I wanted to quit and she said, “but you still need support.” Amazingly, it had never really occurred to me that I needed support. In fact, that’s the interesting thing. Even though many caregivers would admit they are having a very hard time, I don’t actually believe they think they should take care of themselves. It’s just more of the same, but harder, right?
This belief certainly seems to be validated by the medical community who not once told me that I should take care of myself. That in fact, if I wanted to be an effective caregiver, I should get some tools to cope with the daily stresses I am dealing with. Many people I know deal with pain by not dealing with it. They would rather shove it under the carpet. Become workaholics. Over eat or under eat. Drink too much or become sports addicts. Or it goes in the other direction, they just sink into depression and anxiety.
Where is the medical community? Where are social systems?Why isn’t there a system in place to help caregivers? When the neurologist handed me a note with “physio and OT” on it for my 11 month old daughter, why didn’t he write another note for me? Some might argue that in most Western countries there are social workers, and school psychologists and foreign worker care that can definitely relieve some of the burden but in my experience, this daily pain I felt, the constant triggers that would throw me sideways, there seemed to be nothing to help me cope with that.
In my vision of how this world should be run, when people experience trauma, especially of this nature, a whole system should fall into place that can at first, provide a deep sense of relief and then later on provide you with real tools to address the areas that keep challenging you. Not just “take some time out”, “get a massage”, “make some time for friends.” These are important things but let’s face it, it’s a welcome distraction.
There are so many caregivers out there. 43 million US adults provide unpaid care for someone with a serious health condition each year and that number is only growing. I believe we should be doing more for so many people who are under stress, exhaustion, and often meeting huge challenges in one of the most difficult situations that people can find themselves in.
We need to support caregivers’ physical and mental health and functioning and provide interventions to improve and support their wellbeing. Caregivers must become resilient to cope with complex, multidimensional and dynamic situations. They need an increase in knowledge and skills to cope with their daily lives. They must be able to access support, services and people experiencing similar challenges. In many cases they are faced with a lifelong marathon. Let’s turn it into a remarkable opportunity for growth and happiness. With time and work, it is possible.
The image here is of the beautiful Parvati River running through Kasol in Northern India. I visited this river many years ago and its power and peacefulness I have never forgotten.