Seven years ago a driver fell asleep and collided with an unsuspecting man named Rick. Rick was a husband, father and and engineer. His accident rendered him a respirator dependent quadriplegic, paralyzed from the shoulders down. His wife Trish went against doctors recommendation to put him in a nursing home and instead brought him home. With his income eliminated, Trish went back to work full time, leaving her with three full-time jobs -- work, wife and mother, and caregiver/case manager for a man with severe disabilities.
I first met Trish through one of her postings on the Christopher Reeve webpage
I was struck by her raw honesty about her life and lives of many caregivers:
Dear Dr. Dan,
I feel like I’m always in the fight mode. My husband’s injury has changed me. I used to be reserved, non-confrontational, rather subdued, but I am totally different now. I can’t begin to tell you all the medical mistakes, insurance mistakes, and various other screw-ups I have encountered over the last 7 years. My attitude now is that everyone is going to mess up unless they prove otherwise. I guess in some regards that has suited us well because I have fought hard for things that were denied to my husband and my persistence has ultimately paid off.
The problem is that I have lived in this fight mode for so long that sometimes I can’t seem to turn it off. Tonight we ordered pizza. My husband did it online and redeemed some online coupon for $2. The pizza guy shows up at the door and wants a copy of the coupon otherwise he is going to charge us an extra $2. I get furious as we ordered pizza there 50 times and this hasn't happened. I rummage around the house and finally find the coupon. He satisfied, but I slammed the door in his face. By now I'm completely worked out and I start looking in the phone book so that I can call the manager and scream at him. Luckily I snapped out of it. OK, this time I have come to my senses and let the pizza thing go, but what about the next time? I have this mentality that everyone is on the brink of screwing us, and I’m going to do anything to keep that from happening. How can I be kinder and gentler when the world feels dangerous?
anger? Anybody reading your letter probably felt anger. When something or someone threatens someone we love, anger turns into rage. Some people talk about positive emotions and negative emotions. Personally, I don't believe in that stuff. All emotions have positive and negative parts. When I had my accident, my family used their rage to move mountains. Insurance companies were pestered, lawyers were mobilized, hospitals made exceptions with rigid policies and none of that might have happened without anger on the other side. But our bodies crisis mechanisms are designed to work in short bursts. That's because when we were all on all fours, crises happened in short bursts. The mountain lion came and one way or the other the crisis was over quickly. Your mountain lion seems to have taken up residence in your life.
I usually talk about people's hearts, I'd like to talk about your brain. I'm sure you know by now that your husband was not the only one traumatized seven years ago, but what you may not know is that trauma also affects the brain. Add to that all of the stress hormones coursing through your veins, and you have a cortex that needs care.
Once a brain and nervous system gets agitated repeatedly, it takes less to agitate them and more time to calm them down. And pretty soon your brain becomes like an overtired child and it can no longer distinguish a mountain lion from a pizza guy!
So how do we take care of your brain? First of all, you have to agree that you and your brain health is as important as anything else. So you must find time to get rest, eat well, and find something that gives you pleasure every day if only just for a few minutes.
I'd also like to see you make a distinction between what is happening on the and how you are reacting. Research shows that if you can put a few seconds between a stressor and your response, you have many options. If you could be more aware of when you are chest tightens and you feel out of control, then you could know that you need care in that moment. Whatever is happening outside is not a mountain lion and it can wait. What is happening inside needs care right away. So close your eyes, take a few breaths, notice how distressed you are in and focus on Trish just for a few seconds.
Hmmm I wonder if pizza could ever be slid under a front door in order to prevent serious injury to pizza guys.
Please take care of yourself. Please
When Trish agreed to join me on our Web chat Tuesday, she sent the following:
I hope that like today, the kind, gentle, compassionate Dr. Dan shows up on Tuesday. You know we caregivers are tough as nails on the outside because we have to be. But deep down we are tired, frustrated, edgy, guilty, and feel very alone because not many can comprehend the circumstances we face daily.