For those who have followed my story of Anne living in a residential care facility, I have more updates on our journey together through the maelstrom of our current healthcare system. After falling over a dozen times at the residential facility, she ended up in the hospital. The doctor recognized something terribly wrong and held her long enough (three days) to give her the choice of not returning. She was then placed in a rehabilitation facility, and when her thirty days ran out and she fell again with her walker, she was shunted off to the nursing wing of the facility. The end of the road. As I drive there weekly to visit, I note the warning sign on the road–Dead End. It was very depressing for her, but she held out hope that she would finally get what she had begged for, for so long; daily range of motion exercises and better care. But you know how it goes. That, of course, didn’t happen.
For those of us who act as heroes to others in need, there is a fine line when acting as a rescuer. Sometimes, anger gets the best of us. Have you ever gotten so angry on behalf of another person that you ended up making the situation worse? If so, I feel your pain. If you have ever tried to care for someone living in a facility, you have to battle almost constant rage. Those of you who have a parent in a nursing home will know exactly how I feel, because all nursing homes are all the same. The staff is charged with doing more than is humanly possible, and at some point they shut down emotionally, even rationally.
The institution itself takes a toll on healthcare professionals. No one goes into the healthcare profession for maximum profit—there are easier ways to that. They do not choose the profession due to a lack of empathy. The reality is that they are consumed with the burden of caring in an uncaring environment. Their patients are disempowered and hostile, the administration above focused on feared litigation, not ethical care, and the cost is often disconnection from compassion. I can’t blame them, but yet I sometimes still do. I blame their choices and their apathy, much like any activist would, exploding in exasperation: “Look at this! This is insane! Do something!” What many activists don’t realize, though, is that people have looked, people have seen and they know it is insane, and they have shut off their mind to it. It is too painful, too huge, too taxing to do something. In the end, we are all being powerless together, blaming someone else, each other.
I recently brought Anne to a statewide gathering arranged by a disability rights organization. She met other adults living with Cerebral Palsy and explored various living arrangements that they use. She gained the courage to hope for independent living back in an apartment, and we are now actively searching. It seems the only solution to living in a facility is to get the hell out, if you truly want to live.
The others at the meeting were also very angry, and for good reasons. The tension was palpable as I watched each person share indignities and abuses by staff paid to care for them (can you really pay someone to care?). But, at some point an angry meeting, even if it is good to vent a little and share stories, becomes unproductive. It doesn’t do a whole lot of good to know your rights when they are being violated left and right with impunity. We were trying to focus on improving a training to teach disability rights, so I suggested a series of videos to tell the story. It turned the meeting around to something productive, the creation of a good teaching tool. I watched everyone come alive again, forgetting their personal pain, and thought about the value of creativity.
Anger can be a useful mechanism to get attention, but it must be channeled properly to achieve a desired result. Even when you are righteous and the desired punishment is just, it will not heal you. Healing is feeling the connection with others, and choosing not just to help yourself, but others who are feeling the same pain, in community, and working for change. Healing is hope.
No matter what Anne has been through, and no matter how angry we both have become at what is happening to her, what has kept both of us going every day is the hope for a better world. We have both found that in timebanking, in community.
Through our networks and perseverance, we have now assembled a team that is preparing to move Anne out of the nursing home and into a real home, her own apartment, with specialized services in place to make this time a success. She is going to get everything she needs to go back to community. The reason for this is a lawsuit that was brought a few years ago by several people living with Cerebral Palsy who were forced into nursing homes at an early age, just like Anne. They won their lawsuit, and now Anne is bearing the fruit of their struggles and pain. She will be under a state mandated program to receive a considerable amount of support to ensure a better life. I am grateful for their tireless efforts and for the lawyers who persevered to give us hope, along with so many others. I will keep you posted on her progress!
Stacey Jacobsohn is the Director of Time Initiative of Maine