There are times when even to live is an act of bravery. Lucius Annaeus Seneca
Even though I'm the one writing this, it is my mother's story as much as it is mine. Any anxiety I may have about aging is directly linked to her experience; and I am not alone. A friend shudders each time she comes away from a visit with her mother, a nursing home resident. "I hope I can figure out a way to commit suicide before I ever get to that point", she proclaims. I know how she feels. We don't want to think about getting old, let alone lying in a nursing home bed. We don't want to talk about it, and most of us don't even want to hear or read about it.
It doesn't matter that statistics are in our favor. Chances are good if we do go to a long term care facility, we will receive therapy, recuperate, and get back home. But as we watch a parent or elderly friend enter a facility, it's difficult to separate ourselves from the event. We look on as they trade individuality, privacy, and control over their lives for help they cannot get in another setting. We've seen the insecurity, loneliness, isolation, and fear that are an integral part of institutional culture. We've heard residents cry out, "I want to go home. Will you take me home?" Resignation and hopelessness are reflected in eyes that once lit up at the thought of a familiar kitchen, bedroom, or workbench. We wonder if someone with dementia is better off, not knowing where they are.
It has been almost six years since my mother died in the nursing home of a well-respected church-affiliated retirement community. I owe it to her memory, and to families of other residents, to write about her journey. As often as our family visited her, she had to take the journey alone. She was the one eating the baloney sandwich or small piece of fish inside a huge bun. She was the one trying to maintain her dignity while getting the cool shower, and as she said, 'feeling like a horse being washed down in a stall.' She was the one who couldn't get to the bathroom by herself and had to depend on a call bell (that didn't always work) to get assistance. She was the one lying awake in a strange bed in the deepest darkest part of night, suffering from a urinary tract infection and hearing a frustrated aide say, "You have to go again? You aren't the only patient we have, you know."
Such is the cold, hard truth of nursing home life, in spite of the fact that nursing facilites are filled with compassionate professionals who are doing their best to give good care. I didn't appreciate this until I walked into one as an employee. I had been hired as the admissions co-ordinator for a 120-bed facility in Nevada. Up to that point, and because my career had focused on shoring up the local community-based care system for at-home elders, I viewed nursing homes as dumping grounds for sick, older, and disable adults whose families didn't care or didn't have the time for them.
As the director of a five-county federal and state-funded area agency on aging in Oregon, I worked with a team of staff members who were trained in Medicaid nursing home rules and regulations. They were charged with surveying nursing facilities and reporting non-compliance back to the state office on aging. Our staff meetings didn't focus on the good in those facilities; we talked about bed sores, odors, soiled sheets still on beds, illegal patient restraints, and elder abuse. I didn't trust nursing homes, and I didn't try to understand life in them, least of all from the employee's or family's vantage point. I could not see beyond the misery of residents and depressing surroundings, which I blamed on bad administrative practices and poor staffing.
My thinking changed as soon as I admitted my first resident into the health care center in Nevada in the late 90's. It didn't take long for me to realize that not only had I judged all nursing homes unfairly, but I had dismissed the roles played by loving family members, volunteers, hard-working nurses, dedicated certified nurses aides, and support staff at all levels.
It became clear to me that a pardigm shift had been occurring right before my eyes. Society began to hold older adults in higher esteem, to consider them a natural resource deserving respect and protection. More laws were put into place and nursing homes were held even more accountable. Eldercare became a national priority.
next: Personalizing Health Care
(c) Sally Z McBain