I worked in the juvenile court system in Cleveland, Ohio when I was 19 years old. My first position was that of typist in the Subpoena Division. I sat among a dozen or so other women typing subpoenas on manual typewriters. It was long before computers and just on the crest of electric typewriters. We used carbon paper by the ream and had a celebration when WhiteOut® was invented.
I was later promoted to the Intake Department where I spent the day talking to various people who had an interest involving a juvenile. I would record their complaint of truancy, criminal behavior, unruliness or other types of delinquent behavior, search the juvenile files for any previous records and prepare the case for referral to the Intake Worker.
Among the complaints I received were those related to child abuse and neglect. There were many cases involving brutality, sexual assault and just plain depraved indifference. One case involved a mother whose boyfriend had thrown boiling water on her twin seven-year-old daughters. Another was the horrific story of a 14-year-old girl held captive for three days by 12 men, two women and two minors. She was raped and beaten repeatedly for fun.
A father of eight came to my office to inquire about representing himself in the pending case in Family Court. Seems he is accused of throwing his nine-year-old daughter down the stairs, fracturing her arm and ankle, forcing his three-year-old son to lie on the floor while the family dog eats food off of his little body and making his five-year-old daughter stick straight pins in the arms and legs of her 18-month-old brother when he cries. He doesn’t think the court should be able to interfere with his disciplining his children.
I listened to these stories for more than a year, wondering every day why people who don’t want children have them. I was even more curious to know how neighbors, family and friends of these dark souls could turn a blind eye to what they knew in their hearts was happening to these children.
Apathy has allowed many tragic events to occur in our world. Why wouldn’t you rush to help someone in need if you could? We’ve all heard the stories of the young woman stabbed to death on a New York City street in the 1950’s. It was later reported that dozens of people heard her screams for help and did nothing. Some later said they were afraid, others thought someone else would take care of it. Ultimately, she died because no one felt a responsibility to come to her rescue.
What kind of person ignores the suffering of another? What causes one witness to a tragedy to rush to help while another will just keep going? Does heroism only apply to extreme crisis or are there opportunities everyday, in small, sometimes almost what seem to be insignificant ways to improve the life of another?
I am exposed to both heroes and the apathetic on a daily basis. Much like those who choose to have children and plan to nurture well, there are long term caregivers who look forward to coming to the aid of another and helping them to thrive.
There are also those caregivers like the folks I met in the court system. They are the caregivers who don’t care, who come to work solely for their paycheck with little concern for the needs of the people they are there to care for.
A seasoned long-term care professional can generally identify which camp a staff member is in after a period of observation. In some ways I appreciate someone who is clearly on one side of the fence or the other to the one who preaches quality care and residents’ rights, but fails to demonstrate the kind of behavior that will truly achieve those goals.
I had the unfortunate opportunity recently to witness this kind of two-facedness in an exchange with an activity programmer in a nursing home. I was observing what was described as a music therapy program for approximately 35 residents of various ages and circumstances. They were seated haphazardly in a large room, some off to the side sitting alone, others engaged in playing cards and others were sleeping while extremely loud music blasted over the speakers.
I watched as four activity aides and volunteers walked among the disjointed crowd limply clapping out of rhythm to the loud music and virtually ignoring the residents seated around them. I asked the programmer what they were doing that was therapeutic? Did they know if the people in the room liked the music? Did they ask anyone if it was too loud? Was there some reason why residents weren’t encouraged to socialize or why the staff looked as though they were tortured to be there?
Her response was short and sweet – “it’s not my program”. I said I thought that was like a certified nursing assistant saying “that’s not my resident” when asked to provide assistance to someone. “Don’t you feel some responsibility as a senior programmer to correct what your colleagues are doing?” I asked her. She did not. She repeated that it was not her program and that she was good at what she does. Really?
Perhaps it’s just my perspective, but I remember hearing President Bill Clinton respond to a reporter who asked if he would stop working now that he is no longer in the White House. He told the reporter that it would be wrong of him not to work if he is able. He said he’d been blessed with the skills and the knowledge to make the world a better place and it would be wrong of him not to use those gifts.
In that spirit, I think it is every caregiver’s responsibility to champion for the rights of residents to be provided with a life that is worth living. Not just being maintained in good health, but really living. Eleanor Roosevelt said, “The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.”
That includes being your brother’s keeper – being interested in correcting the slight, the wrong, the lack of consideration, the apathy or the abuse. Speaking up and modeling the kind of behavior necessary to the quality care of human beings.
Apathy is at the core of what is wrong with our institutions. Add to that a good dose of me-first-and-later-for-everyone-else thinking and you have a hotbed of disorganization, unhappiness, discomfort, stress and sometimes enough dysfunction to sink the ship.
In a recent education session with a group of nursing home caregivers on the subject of quality of life in which I talk about the benefits of an in depth psychosocial assessment that leads to a truly personalized care plan, I was shouted down by several staff for being unrealistic. They said they don’t have time to talk to the residents. One nurse said, “You don’t think we can talk to these people in here the way we talk to normal people out there, do you?” Enough said.
If we are to achieve a true change in the culture of long-term care we have to stop tolerating the apathy. We have to make caregivers understand that there are no more resources. We must work with what we have and the work would be so much easier if we would just understand that these people are wired the same way as you and me – they just have a few other challenges.
I don’t know about you, but I signed on to tackle those challenges. I am devoted to caring well and inspiring – sometimes shaming – others to do the same. If you do not want to care well, if your heart isn’t in it, if you can stand by and watch as others fail to do the very best they can for those in need, then you should move on.
Take a fresh look at your environment – daycare, assisted living or nursing home – over time every environment becomes familiar. So familiar that you become jaded and you stop trying to make it better. You accept whatever dysfunction as what is and turn a blind eye to the suffering of the resident that is not getting what he or she needs.
Remember when you first began your career in long-term care and a resident you’d befriended died? You felt it and you grieved the loss of your friend. After awhile, you make fewer friends, you don’t try as hard or invest as much time in getting to know the people. There is more emotional distance and less interest in swimming upstream.
So, you worry about your job, your task or your world and there is little worry left for the people in need and the integrity of the care. The simple act of stopping to say, “Hello, how are you?” and actually waiting for an answer demonstrates to the onlooker that you can talk to these people like normal people.
In a time when science is showing us that the simple offering of more intellectual stimulation – including simple conversation – may be the most effective method of staving off the dementia epidemic, encouraging more talking, more education and challenge should be the focus of our therapeutic offerings. Talking more, being more interested in the person and their history will only lead to greater understanding, tolerance and genuine, personalized care.
When was the last time you watched or had knowledge of something inappropriate and thought about speaking up, but didn’t? Next time say something. Be a hero and a champion for a quality existence. Change someone’s life. It costs nothing, but could change everything.