It started because I wanted to help people, and caring for the elderly seemed like a good way to do it. Health care is an attractive market. Jobs exist in every city and town. Those jobs have purpose. And as the baby boomers keep aging, the market keeps growing: One of the biggest fields in health today is caregiving for elderly patients.
Cognitive impairment interested me. One of my grandmothers had had Alzheimer's, but it wasn't a disease I knew a great deal about. I wanted to learn more. I wanted to quit my tedious day job and help people instead of selling them things they didn't want or need.
I took classes. There I learned quite a bit about Alzheimer's. I learned about plaques and tangles, the beta-amyloid protein, the possible causes, and all of the statistics. But neither my desire to help nor any class prepared me for the reality of working with actual patients. The first day I stepped onto the floor of a nursing home, when I transformed from a curious student to an actual caregiver, everything I thought about dementia, aging, friendship, and even the nature of death changed.
Here's what I learned.
Individual caregivers can't fix the system
My first day in a nursing home was one of the most traumatic events of my life. I'd taken all the classes. I'd done the required clinical internship. I had the knowledge and the firsthand experience. But nothing prepared me for that first day on the floor.
It was a madhouse. Nurses were scrambling everywhere. Residents were constantly calling for help, ringing their call bells, but the workers were too busy jumping between patients to answer them. Many patients were unable to help themselves, even in small ways. Personal hygiene wasn't optimal.
It wasn't because the nurses were apathetic or incompetent. Trust me when I say that the people I worked with were some of the kindest, most giving people I've ever met. But the whole system is a chaotic mess; the result of a structure meant to warehouse people, where patient interests and business interests are often in conflict.
Consider that, other than in California, there are currently no specific mandatory limits to the number of patients that can be assigned to a single nurse. Because a nursing home is a business, it is incentivized to keep the facility full — in many cases, that means every room has two patients — while minimizing the overhead cost of staff per shift. Quite a lot of legislation exists defining the rights of patients, but none of this means much when the environment simply can't meet its obligations. Individual patient needs are overwhelmed by the needs of a dozen others, all of them ringing their call bells at the same time, all of them with only two or three staff members around to answer.
That's what I saw on my first day: a mess. And no single caregiver, with a mountain of tasks to perform during a shift and a mountain of paperwork to fill out after it ends, can fix it. The sooner you accept that, the sooner you can focus on what you can do.
You can't "fix" the patients either. But you can help them.
What I remember more than anything from my first day isn't the chaos. It was standing in a resident's room when an old woman's tiny, shaky hand grabbed my leg and pulled me close. The woman, who was in her 90s, was sobbing, shaking with agony, and she started calling out to me. "Help me, sir! Please help me! Please, I need to see my mother!"
I've always prided myself on being practical. Every problem has a solution. Willpower will get one through anything. But here...
I realized I couldn't cure her. I couldn't give her what she wanted. There was no logical solution to her problem, nor a cure for her condition. She was confused, lonely and terrified, with no idea of where she was or how she had gotten there.
I didn't know how to help her because the answer wasn't a simple solution of practicality. Even in the immediate sense, she required someone who knew all of her personal tics, who knew what calmed her down. As a newcomer, I didn't know any of these things. I knew nothing about her, and yet she was staring into my eyes and begging me to help her.
I had no idea what to do. I felt hopeless and guilty. I figured that this job was too much for me, that I needed to leave it, that all of this had been a bad idea from the start.
For weeks after, I tortured myself over my inability to help these people. Even if the system had been run perfectly, I still couldn't cure them. I couldn't save them. I couldn't fix their painful situations. They had lived their lives. They had come down with a terrible disease. They would spend their last few years in this clinical setting, Alzheimer's chipping away at important memories, at faces and days of the week and basic life skills, until there was nothing left. I fixated on these problems, torturing myself with them, feeling more and more helpless.
Then I realized: My job was about what I can do. And what I could do was work with people instead of working with problems. If I couldn't fix my patient's situations, I could help them. No, I couldn't save the 90-year-old woman, nor could I bring her to a mother who had certainly died decades ago. But I could be there for her. I could talk to her, hold her hand, and give her the company she craved.
That's what I began to do for everyone I took care of. I greeted every person with a huge smile, I remembered the individual details of their lives. I treated them like friends instead of patients, because that's what I could do. All it took was stepping outside of myself and my own feelings of inadequacy and being there for them. Instead of beating myself up for not having big solutions, I could make my patient's lives better, if only for a moment every day.
Friendship isn't about common interests, demographics, or even good conversation: it's about love and understanding
Before working with Alzheimer's patients, I would've defined friendship as a positive association with another person based on having something in common. Personal interests, a shared background, shared experiences — these were what I thought made a friendship. I also would have said that these close connections were dependent upon meaningful conversation.
That definition isn't unusual. Many people would define friendship roughly that way. But I now realize that all of that is wrong.
Many of my patients became my friends. But our friendship was defined by love and understanding, by the empathic connection of two people sharing a moment in time. Many of the residents I've taken care of were unable to properly communicate. They might've had aphasia, they might've struggled to find the words, they might've said the opposite of what they really meant. But it didn't matter. The closest, most important moments had nothing to do with the words that were said.
What mattered was that I was there for them. Shaking their hand as a greeting, giving their wheelchair a ride outside in the sun, taking them out for a cigarette, sitting beside their bed when they're in pain — being with someone who is lonely, whether speaking or not, is what makes a friendship.
I saw it between patients, too, even when neither did much talking. In one room we had two women: a tough-as-nails biker, her arms covered in tattoos, and a former model who often broke down in tears. The two rarely spoke to each other. They had little in common. But they often held hands, and laughed together, and sat with each other at meals. Each was the other's best friend.
Alzheimer's patients aren't "crazy" — we all are
It's easy to write off the quirks that so many dementia patients develop as their symptoms progress. Stripping naked, fiddling with their food, demanding weird and eccentric things — we've seen it all.
But when I really consider all the strange things my patients do, I have to ask myself:
Are we really any different?
What I realized working in the nursing home is that the answer is no. Looking at my own life, I had just as many weird habits. So did everyone in my family. So did everyone else working there; I knew at least one co-worker who would occasionally steal quick breaks in whatever empty room he could find, scan through a carefully hidden newspaper for a bit, and then go back out, without ever telling anyone. The daily routines of most people are, if closely considered, completely bizarre.
With Alzheimer's, people lose the ability to hide how weird they really are. It strips away all their social conditioning, all of the masks they wear to protect their inner self from the world. It reveals the core realities of that person: A human being is reduced to his or her basic parts. These eccentricities are inside all of us, just waiting to be revealed if and when we are no longer in control.
The secret to understanding the strange behavior of Alzheimer's patients is realizing that their weird habits are motivated the same way as anybody else's: in their mind, at that moment, it seems logical.
Consider the strange behavior of anyone you know. How many of us repeatedly check that the stove is off after we walk away, even when we know we shut it down? Why do people decide to spontaneously invest in decorative tables, or goat farms, or online scams? Somebody reading this — probably several somebodies — have eaten out of the top of the trash can before. They just did it when nobody was looking.
What Alzheimer's does is remove the filter.
It might seem bizarre when a woman obsesses over where her dentures go, or when a man eats nothing but scrambled eggs three meals a day, but it makes sense to them. A normal person might hide these eccentricities, recognizing how odd they are. But somebody with Alzheimer's will not. Their behavior is an exaggeration of the human condition, private tics made public by a lost sense of time and place.
Working with Alzheimer's patients changed how I handled my own interpersonal relationships, both at work and outside of it. I've always been accepting of others — and I've always been something of a bleeding heart — but I tried to control people, too, desperately trying to "save" everyone I cared about by arguing with them when they did something I disapproved of. Now I see how important it is to allow others to live how they want to, whether I agree with it or not. People will move in and out of your life, they'll do things you don't want them to do, but we should all accept every person for who he or she is, not who we want them to be. Underneath it all, they never will be anything but themselves, anyway.
Death is a natural thing
As a culture, we are afraid of death. But I try not to be.
I've now been in the room with several patients as they died. I've held people's hands as they passed on. From this perspective, death doesn't look like the looming, terrifying thing that we are all trained to imagine. Most deaths aren't particularly pretty, nor are they comfortable, but they are natural.
Having been in the room when a person dies, I can attest to the way that afterward they ceased to be that same person anymore. Their body becomes a separate entity from the human being that they were, just mere moments ago. And even more so, when people reach a certain threshold of pain, I've seen the peace that comes over them as the end is approaching, as the pain is nearing its end. Not all people die easily. Most hang on far longer than they want to.
But we should never feel sad for one who passes away after a long, good, happy life. Instead, our sadness should be reserved for our own emotions, our own loss at the chance to continue having this person in our lives.
Many nursing homes try to sweep death under the rug, trying to hide it from the resident population. When a person dies, another one takes their half of a room. Like in a hospital, there are never any kind of memorial services held, or even gatherings for that resident's friends in the nursing home — both caregivers and other residents — to talk about them, to commiserate, to celebrate that person's life. This should change. Nursing home services should be held whenever a resident dies, so that people know they matter.
Life has meaning because death exists. We love the good times in life because they're fleeting, because we know they will soon be replaced by something else. But death itself is nothing to be afraid of. It's a natural part of life, the natural closure that everything builds to. Working in a nursing home has taught me that: We're all lunatics on a big space rock, pretending to be sane, pretending we can fix everything, pretending we won't die.
I think about the old woman who grabbed my leg that first day. The one I didn't believe I could help. In the way I meant it then, I couldn't. I never saved her. I didn't find her mother. I didn't cure her Alzheimer's. But I did help her. I took care of her until the day she died; talking to her, bringing her food, keeping her comfortable, and pushing her wheelchair on little rides around the facility.
But she helped me a thousand times more than I ever helped her. Because of her and everyone else I took care of, I became a better person than I ever could've been otherwise.
Nicholas Conley is an author. His novel Pale Highway, which deals with Alzheimer's, will be released later this year by Red Adept Publishing. He can be found on the web here.