How I Got Into This Nursing Racket, Anyway

I had been waiting tables for a few years, and badly. Whatever it is you need to be an engaging and tipable waitress, I don’t possess. I had shirked going to a four-year college (although my excellent high school transcript could have sent me to a good one) and had dabbled and failed at a little community college (I stopped showing up). I was at a crossroads time of my life, just turned twenty-one, and saw an ad in the newspaper for a direct-care human service job at a state institution for the mentally retarded. I had a black mohawk and was fifteen minutes late for the interview—but the job being what it was, I was hired anyway.

That job set the direction for the rest of my life.

They were all in wheelchairs. They couldn’t talk. Some of them had seizures, small ones like tic-like twitches and blinks, and others had full-blown grand mals. The diapers were cloth ones—the adult sized pampers were only used for when they left the dormitory to take the van to their day programs. The day programs were to stimulate them, engage them in some way, but I only saw them back in the dorm. It was my job to bathe them—everybody was bathed every night—and feed them, and put them to bed. Every two hours diapers were checked and changed if needed. They were repositioned out of their wheelchairs onto vinyl wedges or mats on the floor. The beds were in large rooms, like wards, and arranged against partitions.

By "they", I don't mean “they”. At first it was the most frightening thing I had undertaken in my life, far and away—a human being, fully grown, who didn’t look or act like anyone normal, and who didn’t seem to live by any rules I could readily understand. The first time I was by myself, undressing and bathing a nonverbal adult who couldn’t even make sustained eye contact with me, I was a mess. I could only break it down to a mechanical task, like doing the dishes, separate from the person I was caring for. After a few days it was better--I would smile, and chatter, and try to be as quick as possible so they wouldn't get too cold. They started to become people to me.

One of my co-workers was an older woman who had been there a few years. She was a bland person, a stickler for routine who often got on my nerves, but what I remember about her most was her telling me early on, "When I started here, I would go home every night and cry over these poor kids and how sad it is that they are like this...I don't know why God makes people suffer this way. I try to do what I can to make things nice for them."

I was startled when she told me that. I didn't go home and cry; I didn't feel sorry for them at all. The only time I saw pain on their faces was when, for instance, little Sadie was having one of those awful runs of seizures that would jerk her body so badly she would start to cry, like the two-year-old she mostly was; that was hard to witness. She was my favorite...rather, one of my favorites. She had a freckled, homely face, and would smile and laugh when I hugged her. Feeding her was a chore; she drank all her meals and would not eat any other way, and often would shake her head from side to side and most of the drink would spill down her bib.

I got immune, more or less, to any fluid or substance that would come out of a person's body. I got the best upper body strength of my life, hauling six-foot tall men out of their wheelchairs onto the raised porcelain slabs we lay them on to bathe. (This was before mechanical lifters, and before gloves, too, if you must know.) I took to bringing my boombox in and playing The Cure, or 10,000 Maniacs, or whatever else I was into before I was told not to by the supervisors (I was a young twenty-one, more like fifteen in many ways). For this work, my take-home pay was $225 a week.

I loved that job.

A couple of years later, when the state was paying for me to go to nursing school and giving me full-time pay (that $225) for part-time work (but nursing school was 7:30am until 3pm, except clinical days, which were 6:45am until 2pm, Monday through Friday, for eleven months for an LPN diploma), my hands-down absolute favorite man was moving out--on his way to a newly-formed group home in the community, which were quickly becoming more common. He was the first of our residents to go to one. I got permission from his family to take him out for an evening before he left.

Johnny was no taller than me, couldn't talk, but he could walk and rarely wet through his underwear. He wore a huge football helmet because he banged his head when he was frustrated. I took it off the minute we got to my car. He wouldn't need it with me, and he didn't. I strapped him in, and we drove off, first to my favorite local Italian family restaurant. I cut up his spaghetti into small pieces and he ate it with a spoon, grinning hugely. He was difficult to read, as all of the residents were--how is life experienced when your body is thirty, but your brain is still somewhere around three, or four, and has been for decades? After dinner we went to a playground, and he climbed the ladder up the slide in a lumbering, slow, cautious manner. I wasn't sure if he was enjoying himself or not; back at the dorm, he spent most of his time sitting cross-legged on the couch, making faces, and occasionally laughing at nothing I could see.

One reason why I liked Johnny so much is he giggled wonderfully when tickled, and gave the best hugs in the world. I think that is reason enough to like somebody--anybody, really.

I saw him once more after he had been living in the group home for a while; his parents took him to a Christmas party being held for the residents. I rushed up to him and beamed, and he squinted up his eyes and grinned at me with his mouth wide open. His mother said, "He is so happy, he is doing so well there...he doesn't bang his head at all anymore, and he doesn't have to wear that helmet!" He still had a receding hairline, of course, but his hair was thicker and combed neatly. "Oh, I am so glad to hear that," I said.

There was one night I was working late, doing an overtime, and while making rounds at midnight it hit me--where I was and who these people were hit me in a way it never had before. I suddenly felt profoundly sad. The blank eyes, the wet diapers, the one-sided conversations seemed to strip all meaning from what I was doing. "Why are these people alive?" I thought. The feeling hung with me for the rest of the long night.

The next day I was back at three in the afternoon for my shift, almost apprehensive when I unlocked the heavy door and let myself in, but I needn't have worried. The feeling was completely gone. The stark, institutional wards seemed full of life, even merriment. I knew each face, and many of them had become dear.

All us employees knew the backstories of the residents. Some of the stories were tragic, and for reasons sometimes within God's control (if you believe that sort of thing), but more often from within the control of man.

People make mistakes. Things can go wrong. Pregnancy, childbirth, home environment...

But none of that was present in those dormitories. None of that mattered, day to day. Were their lives harder than mine? Did they suffer? Was the simple fact of their existence a tragedy?

Well...is the fact of anybody's existence a tragedy? Or do we just live a life, and enjoy the hugs and the laughter and the people who take the time to take care of us?

Does anything matter more than that?



 

A Strange Little Hospice Story

I'm a hospice nurse. I see nursing home patients and hospital patients sometimes, but mostly I do home care. The nursing I do feels like old-fashioned nursing, when nurses wore black capes and carried their nursing bags around the worst neighborhoods in the city, and everybody respected them, because they would walk into the most fraught and chaotic situations and make things better.

I take care of people who are dying at various speeds and intensities. A good day for my patients is a fabulous and wonderful thing, and on the good days I give them the thumb's-up and stay out of the way. On the bad days, I'm liable to do many different things--give or set up medications, change bedding, give a bedbath or a shower, make tea, move furniture (don't tell the boss, we're not supposed to), help to the bathroom and back again, give hugs, hold hands, adjust the TV, amuse the dog or cat, change lightbulbs, make a phone call, or just talk. I talk a lot. I teach, patients and families, about medications, about caregiving, about symptoms, about what we call "the decline", and about death. I do nursey stuff too--blood pressures and wound care and all of that--and engage in the social chitchat all of us need to feel comfortable and comforted.

I listen. I hear a lot of stories--amazing stories--but I am not, by nature, a story collector, or much of a story listener. Even as a kid, I got bored being read to and learned how to read early so I could tell the stories to myself. I work with chaplains and social workers, and they see my patients too--usually not as often as I do, but often--and they collect the stories far better than I can.

My patients sometimes tell me things they can't tell anyone else. I've been the one they have said "I know I'm dying," to and cried, while I sit there and listen. I find myself witnessing a lot of pain, and a lot of letting go, and it keeps me clear in my own life about what is important and what is nonsense, but not for a minute do I go into my work to meet some need of my own. Many of my patients never get close to me at all; sometimes I get closer to a family member than the patient, and sometimes I'm just the nurse, and that's okay. I'm there for them, not for me, and I'm not trying to be anything more than what they want or need me to be.

Sometimes I find myself trying harder than usual, though. Jean from the islands was in his nineties but didn't look it, and he had a smile that was the best I've ever seen. When I would visit him and he was angry about being sick, or simply feeling like shit, and I couldn't get a smile, I'd joke and tease and cajole until I got one. The few times I couldn't I would leave his house feeling a little like shit, too, which wasn't fair to Jean at all but I couldn't seem to help it.

When I started being his nurse we would sit together in his yard out in the sun and talk. His accent was thick and difficult to navigate, but he didn't mind repeating, and when I would say, "Jean, I have no idea what you just said," he would smile and shake his head and repeat it. He worked manual labor his whole life, and his arms were still etched with muscle, although thinner by the week. He had rode his bike everywhere until he got too sick, about six months before I met him. He had a deep belief in God. His issue with the business of dying had much less to do with leaving this world than with his body skipping out on him. By Christmastime he had been bedbound for weeks, and the boredom of being weak and exhausted would make him irritable. Often I would visit and he would be sleeping, so I would not wake him--I would quietly assess his breathing, his color, the appearance of comfort versus discomfort, and talk to his granddaughter about what had been going on and what they might need.

A week before he died he was the brightest I had seen him since the days we sat in the sunshine--he told stories, he laughed, he knew where he was. I sat beside his bed for much longer than I usually gave a visit, because I suspected this was the last time, and I was right. The next day he went to sleep, and he didn't really wake up after that. He died right before midnight on New Year's Eve, in a characteristic decision to live the year out to it's fullest.

I don't go to funerals much, but I went to Jean's. I didn't get to the wake, so before the service, I paid my respects while the casket was still open. He was dressed in a dapper gray suit, looking not at all like himself, but then I noticed--to my great joy--that he was smiling. I had never in my life seen a body smiling serenely in a casket, but he was--the corners of his mouth were distinctly upturned.

A few days later I was in the office, and saw the chaplain I work with, and I mentioned going to Jean's funeral. She had been to the wake. "It's amazing," I said, "but did you notice how he was smiling? I've never seen a person smiling in a casket before."

She gave me a very odd look. "He wasn't smiling," she said.

"What? Yes, he was. It was so clear. His mouth was turned up. You couldn't miss it!"

She shook her head. "No, kiddo, he was not smiling. You saw him smile?"

Now I was doubting myself, but in my mind's eye, I could see him. I could feel him, too--I had felt the happy, boyish, joyful energy of his smile all around his casket as I stood there looking and saying my own version of a prayer for him. "Yeah, I saw him smile. He was smiling."

"That must have been for you, kiddo," she said.

You know? I think it was.