I learned the hard way never to say the C word at work. No, it wasn’t that C word, though it may as well have been. It is the one word you never say in a nursing home, whether a resident, family member, or employee, like me. Such a vulgar utterance typically escapes a resident’s or employee’s lips when he is frustrated, or not thinking correctly, or unused to the atmosphere of the place. When it happens, everything stops. People will turn icy glares upon the speaker, or sometimes shun him from their presence. If one must speak this word, he should speak only to fellow employees whom he trusts, keeping his voice at a whisper. Better yet, he should change his vocabulary; this little word isn’t worth the trouble.
It happened to me several months ago. I had been working at a nursing home for a little over half a year, and I was beginning to feel comfortable. I had settled into my ever so special, hyped up, sickeningly positive title of “Life Enrichment Assistant.” I was powerful. I was influential. And I was enriching lives. Actually, I just led exercise classes and printed the activity calendars. But they were life-enriching exercises and calendars.
One day I was notified that one of our new residents, an 88-year-old woman whom I shall call Judy, was having a hard time adjusting. This is common with new residents. Suddenly they don’t have to cook or clean or go anywhere, so they wander around the building. Judy, was meandering about, unsure of what to do, getting lost, and forgetting why she was there. I was sure Judy had gotten a calendar when she arrived, but I decided to give her another one. Then, using the calendar, I would show her the various activities available to her. It was simple procedure; I had done it before.
I went down to Judy’s room, only to find her standing in the hallway outside her door with her daughter. I said, “Good afternoon, Judy.” I’m very friendly at work.
She said hello and introduced me to her daughter. I smiled graciously and began to explain why I had come. “ Well, Judy, I have come to bring you an activity calendar. I know you’ve been a little confused lately—“
Thinking back, I swear I felt a chill pass through that hallway.
Judy’s daughter stepped in front of me. “She already has a calendar.”
“Yes,” I said, caught a little off guard, “but here’s another one in case you need to—“
“She already has one,” Judy’s daughter snapped. And with that, she grabbed her mother around the shoulders, and quickly ushered her away down the hall. I stood there, staring blankly, with the calendar still in my hand.
The word, “confused,” is taboo in nursing homes. Everyone, from the residents to the families to the management, fears to say or hear it. People may mumble it softly as they look around to make sure no one is eavesdropping. And yet it’s only a word—one we don’t even think about anywhere else. And, frankly, confusion is quite common in nursing homes. I enrich the lives of dozens of confused people every day. Minds deteriorate with age, and it is my job, as well as the job of others, to deal with the problems brought about by memory loss. Still, we fear the word. We pretend it doesn’t exist, for the benefit of the residents, and perhaps ourselves as well.
My family has a history of dementia. My great grandfather first had signs of Alzheimer’s around the time my parents got married. After many difficult years, he finally died. I was six. Five years ago, my grandpa died after years dealing with severe dementia. I never knew either of these men in their mental prime of life. My memories of both are hazy and strange. Both needed much guidance and care from their families. They forgot the names of their wives and children. They forgot their own names. With dementia and memory loss comes a fearful world of perplexity and pain, both for that person and the family around him.
I am terrified of growing old. At a young age, we feel invincible and spry. I can still do crazy things like eat a whole pizza in one sitting and stay up all night and get up without grunting. I know that as I age, my body will be able to do less than it used to. I am at peace about my eventual physical deterioration, but I am absolutely terrified about losing my mind. I want to be able to remember the past. I want to be able to solve puzzles and tell stories. I want to remember my wife and my children. I want to remember why I love them. If I lose my mind, I will lose everything else: my relationships, my passions, and my memories.
Perhaps we all fear losing our minds in some way. We fear watching it in those we love and respect. Watching a person mentally deteriorate is really hard. At work, I’m supposed to play along with it. If a resident thinks her husband is still alive, I mustn’t rebuke her, but encourage her to tell stories. I ask questions about her husband and her family, and she speaks as if she had just spoken to him moments ago. I nod, smiling, not saying anything, but I don’t feel like I’m enriching a life. If anything, that life, once as vibrant and active as mine, is fading. The best I can do is to help a person the best I can, and pray that I will have someone who is kind and patient with me when it’s my turn.