There is an essential helplessness to being a caregiver. There are times one just has to stand by and hear the groans and complaints and accept that nothing can be done at the moment to eliminate the pain or difficulty. At other times you stand by and watch your patient/spouse/child/parent struggle to do something, waiting until they ask for help, knowing that doing too much for them slows down their recovery.
When my wife brought me home from the hospital in 2010, it was a nightmarish ride through the streets of Richmond and Chesterfield. At least from my point of view. A mere two weeks after 32-hours of brain surgery followed by six days on a breathing tube and 12 days with an NG tube, my head was incredibly wonky and I had only been able and allowed to walk a few days, with a great deal of help, and so I was incredibly weak. When we got home, I had to figure out how to slide out of the truck and get in the house. My wife had “raced” ahead and “dashed” up the stairs of the front porch. She stood at the door and grinned wickedly as I struggled to decide first, if I could get up the steps, and then to make myself.
She knew to wait until I asked for help, one of the advantages of being a special ed teacher.
The situation is reversed now. The inability to walk since May has led to significant muscle loss. After another fall, she has spent this week in a wheelchair and we are looking at further minor modifications to the house to make things a bit easier. There are frequent times that I have to stand by and listen to her moans and struggle to do something, knowing I can’t really do much to relieve the pain or make things easier for her. I can talk to her, I can listen, and do what is needed, but I can’t solve all the problems. I can’t make the pain go away. Nor can I take away the frustration she feels at her inability to do basic things. I can only help her try to get stronger and to continue to self-manage as much as possible.
One of things I can do, must do, is recognize when she is unable to make a decision in her best interests. This can be as simple as suggesting that attempting to go out to dinner is not a good idea, or, as we learned the hard way, recognizing when a new medication is causing a problem and taking it away. It also comes down to insisting when it is time to go the ER, or not. At some point, it may come to the point of insisting on moving to rehab or other arrangements if we get to the point where the house is no longer adequate or she needs more time than I can give.
It is hard to do these things without a certain amount of helplessness and ruthlessness. Helplessness in knowing and understanding the limits of what you can, and should, do to help. Ruthlessness is also required to do things that cause pain or discomfort, out of necessity for the well-being of the patient. There is potential for degrading a patient’s agency that is too great if one does too much. There must be a balance.
And all of this is part of what struck me in reading the Rolling Stone article about the gang-rape at UVa. There seemed to a complete lack of any sense of caregiving in the story. Whether it was the victim’s friends or the institution. No one seemed interested in or capable of stepping into the role and doing what is needed for the good of woman at the center of the story…or any other woman at the center of similar stories.
The role of a caregiver is not easy. It is the human thing to do though, and the right thing to do.