The Caretaker's Path

robmas

Maybe it was because I practically grew up in a hospital. Maybe I just had a natural

tendency to care for others. As a child, I declared that I would be a doctor since doctors had save my life with historical open-heart surgery. Whether it was the far-too-high cost of medical school or simply the path of my life, one of the first meaningful jobs I stumbled upon at the age of eighteen was that of a geriatric nurse's aide.

Working in a former Fort (the type a westerly migration built in order to fend off Native Americans), I found myself surrounded by elderly women, some of whom could date their heritage to the Civil War, all of them widows or mothers of those killed in one of our country's wars.

These were powerful, strong women of the plains. They understood hardship and "going without" in a way I never would. Mrs. Stepp, who was 100 years old and counting, was one of the feistiest humans I ever met. Never seen without her red wig atop her white hair, she would manage to do little but lie in bed and moan all day long. However, come my shift, the night shift, and she would somehow wrangle herself into her wheelchair and push herself down the hallways calling for me by name, which she had decided was "Little Birdy."

Sometimes she just could not sleep and wished to talk. At other times, she would design some symptom sure to concern me so she could have my care to herself for an hour or so. Regardless, I had the feeling that she liked me and I came to love her. While still on day shift, she was the very first person I was ever asked to catheterize and she made it as miserable for me as it was for her, screaming, crying, shrieking that I was "killing" her. She rattled my confidence badly. Months later, though, she told me that I had "not done a bad job." I was greatly relieved.

It saddened me that each day, our job was to wake these women, who had been heavily dosed with barbiturates and Haldol for sleep, bathe and dress them, then restrain them into their wheelchairs (to prevent falls) and park them in front of a television for hours.

Few family came to see them...we were their family. I made a point of asking questions about their lives, loves, children and homes, but the head R.N. scolded me for this, telling me it only made them feel sad. Many of them could remember little of what had happened the day before, much less decades earlier. Doubtless, some suffered from what we now label Alzheimer's, yet the tiny framed pictures on dressers in their rooms spoke of full, rich lives. When asked about these photos, their eyes lit up and the stories spilled out.

After a little over a year, my boyfriend and I returned to Ohio. We both signed up with a temporary nursing agency and were immediately overwhelmed with job offers.

There, I immediately found work in a variety of "nursing homes" as a private duty aid. Whenever possible, I volunteered at the local Free Clinic, where I had my first experiences with the truly "down and out." Sixteen year old mothers who hadn't a clue nor role model for parenting. Prostitutes with recurring STD's. Alcoholics and junkies who were malnourished and dehydrated. I did intake work and assisted the volunteer doctors with basic exams, especially those when a woman had to be, by law, present. Once, I did volunteer work at an anti-KKK rally, rubbing aloe vera lotion on those with severe sunburns, passing out water to protesters overcome by the heat and bandaging the head wounds of those who had been bashed by the Klan's aluminum baseball bats. Had any Klan members come to us for assistance, we would have provided it, but they tended to their own members during the hot, angry day at the Statehouse before the state and local police broke up the melee.

By then, several nurses had urged me to follow nursing as a profession, and I enrolled in the nursing school of Ohio State University. Working as a hospital pharmacy technician along with taking the courses and raising a one-year-old daughter on my own was exhausting, but I was young and fascinated by the work.

One day, while in class, I began to have severe abdominal cramps and the nurses rushed me to the ER where I was bluntly informed that I had miscarried and would need to take several weeks off. This meant that I would not graduate with my class, or go to work at the hospital with the degree in Nursing with the specialty in pharmacology I had sought.

Beyond depression, I looked for other work, but nursing kept calling me back. After two more years of private duty nursing for Vietnam Vets who were quads and paraplegics, in-home care for geriatrics, and in-hospital work with patients on psychiatric units, I had begun to see a side of nursing that did not resonate with me. Many of the nurses, aides, doctors and others I met seemed jaded and over half were active alcohol and other substance abusers. They spoke of patients with contempt and laughed about their indignities.

While I was 6 months pregnant, I took shifts watching over a patient who was a ward of the state, he liked to eat things---razor blades, safety pins, pens and pencils. Restrained at all times, he was a small, belligerent man with a shaved head and wild eyes. Foul-mouthed, he spent most of this time trying to free himself from the soft restraints in order to jump from the window of the hospital, something he came very close to doing on someone else's watch. I threw my shoulders back and marched into his room determined to win this round each time it was my shift, He sneered every time I walked in. After all, I was just a woman and a petite one at that. He spat pudding in my face and used the foulest language he could think of to rattle me. I learned to laugh at him, and care for him as well as possible under the circumstances.

Eventually, I left to work in retail and bar management, simply because, by now twenty-two, the people seemed kinder. They were sometimes belligerent and drunk, but they did not daily disparage those weaker than they were. They did not daily disparage themselves.

It would be many decades later, in 2005, when I was hospitalized in grave condition, that I would remember and recognize some of those same people. The names and faces may have changed, but the aide who shoved me; at 80 pounds less than I had weighed a month earlier and barely able to stand up, into a hot shower and left me for several minutes so that she could change my sheets, for instance. The hospitalist who told my partner and I that our dream of "sitting in rocking chairs on the front porch" was over because I had only four to six months to live, then left the room...the doctor who told me that if I was going to die of renal failure, he had "heard it was a good way to go."

When I suffered brain encephalitis, hallucinating hundreds of baking sheets covering the floor of my hospital room and a secret portal to Canada in my bathroom, one special R.N. took great care with me, and brought me back into the real world. At that time, I trusted only she and my partner. Upon my release, I stubbornly resisted the hospice care for which I qualified. I would be damned if someone else was going to change my diapers or tell me when to take my medicines! Upon my insistence, my partner lovingly printed a diagram of each med I was to take, with pictures of the actual pills and squares I could check off to prove I had taken them at the correct time. She posted it inside a kitchen cupboard as I stuttered, and could not find the correct word for a "pen" or a "fork" or confused the two. I tried to do addition and could not add a column of single digit numbers. Proudly, I announced that I still knew that "two plus two makes four!"

These were difficult months. My hair fell out in huge handfuls. I could not turn myself over in bed. I had no appetite and lived on liquid nutritional shakes but did not gain weight. When I dared to look in a mirror, I saw sunken cheekbones and eyes and grayed skin. Yet slowly, painfully, I began to feel just the tiniest bit stronger. Every week my partner came home from work uncertain of what she would find. Every week she dressed me in sweatpants and slippers and trundled me to the General Practitioner's office for blood draws, lab tests, new prescriptions, and general monitoring. I could see the pity and sadness in my doctor's eyes. I was still dieing and it ****** me off!

Now in my forties, I remembered the lessons I had learned from those strong women in Kansas and decided that I would determine my future, not some jaded, bitter hospice care worker. At the same time, my brother was dying of MS and was surrounded by wonderful, caring medical workers, including our own sister, who had become and R.N. herself.

I advocated for myself and for my care and encouraged my partner to do the same. There were times when I was ready to give up and simply see what was on the "other side." Nevertheless, sheer stubbornness and good medical care kept me alive...a "miracle" to all those involved in my care. My knowledge in pharmacology served me well, and asking questions of my primary and specialist caregivers kept both my partner and I informed. I think often that had I not had that background, that knowledge, I might have given up altogether. Even though I used to regret never attaining the Registered Nursing degree I initially sought, I have no regrets now.

Six years into living with a manageable and normally fatal illness, I feel tired, but happy. And I have a future to look forward to. I would do it all the same way today if I had to with one exception; I would have videotaped every moment of the journey for future reference.

The Caretaker's Path

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