If you have read the first two posts on â€œThe Hero in Us,â€ you might think that our member, Anne, drove off in a limo to her happy ending at a cleaner, brighter facility. How I wish that would have happened. Letâ€™s face itâ€”no one wants to live in a â€œcareâ€ facility, for good reason. Since the advent of privatization, however, the reasons mount exponentially.
The first two months were much better for Anne. She loved the new administrator, â€œJoni,â€ who was always busy but always made time to talk to her. She involved Anne in activities and saw to her medical needs quickly. Joni liked the timebank, and we talked about our traveling band of musicians (I am the lead singer) and that we would be happy to play at the facility. Which we did.
Anne began to shine to me in a new light. I began to study how she was able to connect with residents who were communicating non-verbally. She was born a timebanker, filled with a burning need to connect with others. Most of the residents were older than Anne and in varying degrees of awareness. Some did not speak coherently after strokes or from dementia. She told me one night on the phone that it was strangely natural for her where she was, because it was the same for her in school when she was little:
â€œIf you were born with Cerebral Palsy in my day, they didnâ€™t put you in regular school. I was smart, but all they saw were my legs. I was a ‘Spaz.’ They put you in the Special Room, with kids who donâ€™t even talk or look at you. I learned how to read them. Just like I learned how to read my father when he came home late and drunk. I learned to shut up and follow body language. No one ever gave me credit for being able to learn, we just played games. It was my mom who educated me, until she died when I was sixteen.â€
Anne began to focus on one resident, â€œMay,â€ one of the oldest residents with snow white hair and a strongly curved spine. She muttered constantly in a low tone, barely audible, while looking at the floor and dragging a dirty rag doll in her limp hand. Anne noticed how some of the night staff had no idea how to handle May; granted, most of them had no training at all and worked for minimum wage. May would stop everything and shout if things werenâ€™t right, such as staff moving too fast or giving â€œcommands.â€ Since Anne was next door and usually up late, she would gently intervene, rolling in and suggesting to May that it was time for bed, and the doll would go with her and keep her company. She would look up into Mayâ€™s eyes from her wheelchair, and say, â€œTime for bed, time to sleep. May can sleep now.â€ And May would relax and let them help her undress. The night crew would say, â€œHow did you get her to calm down?â€
One can timebank anywhere, anytime. I gave credits to Anne for helping others at the facility like May, and for encouraging residents to join activities, or assisting the Activities Director. The administrator wanted to talk more about the timebank; she was intrigued, but always very busy. I wondered how the universe was working here, how timebanking was connecting with residential care facilities through our relationship. I could envision immobile residents coming to life, going to work and helping each other with Anne leading the way. She was not happy, but she was making a life there, weaving a web, building community with a very difficult population.
And then one day, men in black suits from Corporate came in and wrecked her fragile life.
Anne knew who they were when they went back out again with Joni in between them, carrying her desk items in a box. They didnâ€™t allow Joni to even say goodbye, and never explained anything to anyone. Joni was just gone. A temp from Corporate filled in before the replacement administrator arrived two weeks later, and the difference between â€œTammyâ€ and Joni could not have been starker. We were in for another battle.
One day, Anne told me that she complained to Tammy that staff was using her manual wheelchair for other residentâ€™s medical appointments. The chair was too small for them and it was damaging her chair. Tammy told her that they borrow it sometimes and not to worry about it. Anne was upset as she described the conversation: â€œItâ€™s my property! I tell them no and they ignore me! Tammy said to me, ‘We hope that you will find a way to avoid conflicts here, because you certainly cause a lot of trouble.’â€
I said that I had an idea, and we went shopping. I found her a bicycle lock on a cable, and when we returned, I wove the cable through the metal bars on her folded wheelchair. The wheelchair could still be rolled to move it, but it could not be opened by staff. When Tammy demanded that the lock be removed, Anne refused, saying, â€œI told you not to use my property. You told me to find a way to avoid conflict. The lock stays.â€ Tammy fumed as she walked away, muttering under her breath about the ****ing timebank!
Staff began to turn over at an alarming rate at the facility. The already untrained night staff took a turn for the worse, with a new worker who barely spoke English. She rushed Anne as she tried to help her get to the bathroom: â€œYou stand up now.â€ Anne pleaded with her, â€œMy legs donâ€™t work well at night, I have to go slowly.â€ â€œYou stand up now,â€ she replied. But it was worse with May next door. She screamed when the aide tried to haul her out of bed, pulling on her arms. Anne decided she had to do something for May, and she complained on Mayâ€™s behalf to Tammy the next day. Tammy thanked her for the information.
Two weeks later, Tammy asked Anne if she and May would like to go out for an ice cream together. She asked Anne for help getting May down to the car, as May only seemed to listen to Anne. Anne happily obliged, leading May outside and talking to her reassuringly as they made their way down the ramp and to the car. Once May was safely inside, Tammy approached Anne. â€œSorry, I lied. Youâ€™re not going for ice cream. May is going to another facility. If you want to say goodbye, nowâ€™s your chance.â€
With emotions racing inside, Anne pulled herself together enough to say her goodbyes and reassure May. As the car pulled away, Anne was filled with rage and pain. Not only was her frail friend faced with separation from all that she knew, they had used Anneâ€™s unique skills to betray them both. She couldnâ€™t even speak when she went back inside the building. Tammy said to her, â€œDonâ€™t forget, the same could happen to you.â€
Sometimes the price of social justice is very hard to bear.
When I saw Anne again, I hugged her hard. I did the only thing I could think of for her. As she looked up at me in pain, I began to sing â€œCrazyâ€ by Patsy Cline. The other residents in the dining room perked up, as they loved our band. They all smiled, and I sang my best. As I went into the second verse, I saw Tammy poke her head out of her office. She smiled, but I could tell she was gritting her teeth.
I was giving them something she couldnâ€™t–hope, love–and solidarity.
Stacey Jacobsohn is the Founder and Executive Director for Time Initiative of Maine