Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

They watch me all the time, even when I use the bathroom," Jake lamented almost childlike. "They get mad when I don't leave the television on the cartoon channel. I can't sleep at night."

"Is that still going on? Are you still having those same problems? I thought things were getting better for you. What about your friend? Did you visit him to get your mind off this like we discussed a few weeks ago?" I asked.

"Yeah, I went to see him over the weekend, and they came, too," he responded wearily. "After I went inside, they made a big ruckus on the porch. It sounded like a whole bunch of them jumping, screaming, and laughing, just to get me all worked up. I kept running to the front door, opening it to catch them, but they would disappear too fast. My friend didn't understand what was going on. I tried my best to explain it to him. Finally, he told me I had to leave. I got the feeling he meant for good. What do I do now?"

Jake was a tall, brown, wiry man I knew from the neighborhood where I worked. He was well mannered and concerned about the community. Over a period of time, however, our infrequent conversations slowly began to revolve around his personal troubles. While I empathized with his sincere pleas for help, his stories became more bizarre each time we talked. We had discussed his unseen stalkers on several occasions. They chastised him about anything he said or did wrong, even small things like forgetting to hang up his washcloth after taking a shower, or leaving a light on when he left a room.

In the mornings, they stood outside his front door and hollered out what he was eating for breakfast. A mocking tone of laughter always accompanied their loud recitation of the breakfast menu. Jake waited for them to start hollering. Then he would jump up, run to the door, and swing it open to a nothingness that shocked him. He tried to trick them one day by eating salad, but they still knew he was eating salad and harassed him more for trying to fool them.

Most of the time, they stayed home to watch television cartoons when he left to go to work or go on errands. Occasionally, they followed him and sometimes spent the day at his gas station job. They insisted that all his work be done correctly. If Jake didn't do something right, they criticized him until he started over and performed successfully, even if it took many attempts on his part. At night, they made scratching noises on the ceiling above his bed to keep him awake. Sometimes they stomped on the back porch or beat on the walls, just to be mean.

These harassing hunters watched him through closed doors, from every corner of every room, on the street, in stores, at the bank, everywhere. There was no escape, no exit from this hell's ghetto. Although they despised him, they had no plans to leave anytime soon. Jake was a desperate man grasping for control of his life. A drowning man, he kept grabbing the non-existent leaf. Although he said he was seeing a doctor, he insisted no one understood him like I did. The truth was I only understood he was a good guy with some dangerous demons.

For several months, I had watched Jake deteriorate from a confident conversationalist into a paranoid caricature of himself. Watching him wrestle with terror fascinated and frustrated me. When he showed up one day with Noxzema dotted all over his upper body, I felt sure my suspicions were correct about his having AIDS (Acquired Immune Deficiency Syndrome). I had read how AIDS-related dementia could affect a person's mind with delusional thoughts. A closer look at his skin revealed scattered clusters of bumps like patches of ant bites. Anybody could see he needed medical treatment. We had discussed my concerns before, but he bristled with denial whenever I suggested he might have AIDS. Standing there looking like polka-dot confusion, he insisted his doctor said he only had a rash that would go away soon. He said he felt fine, but he surely didn't look like it.

I was a Detroit public school principal working in a low-income, housing-project neighborhood that had one of the highest HIV/AIDS, drug abuse, and prostitution rates in Michigan. The many challenges inherent in this position were what attracted me to the job and location. Although I loved the school and community, the last thing I needed was another problem to solve. I certainly didn't think talking with Jake in a friendly manner would escalate into life-threatening revelations. But Jake was in no mental condition to save himself. Ongoing chaos had become normal to him. Whether I wanted it or not, his agony, with all its desperate fury, had landed on my desk.

I asked him for his phone number, so I could explain my concerns to his family and encourage them to get him medical treatment. During my call to them, they told me they knew about his problems. They were tired of dealing with him and his fantasies. His brother added that I should quit wasting my time with Jake's attempts to get attention. Jake had clearly been written off, in terms of their support for his condition. He had told me I would get that response. He said he had heard it all before, that they never took him seriously. In his starring role in this real-time horror movie, he continued to ride his catastrophic car of fear and helplessness. Somebody needed to steer this runaway ride. As much as I dreaded the task, I seemed destined to be that somebody.

Getting medical treatment for Jake became another item on my long list of priorities. I couldn't trust him to handle the escalating pandemonium anymore. At the same time, I knew I wouldn't ignore him. Convincing him to go with me and the invisible stalkers to see a doctor wasn't easy. Everybody had jam-packed schedules, including me. However, sleep deprivation was smothering Jake with exhaustion. Although he denied the seriousness of his situation, a part of him welcomed the possibility of relief. Deep down inside him, memories of peace, privacy, and ordinary days, days that most people take for granted, struggled to maintain their presence.

Jake finally agreed that it made sense for all of us to go together. Maybe the stalkers were curious about this new twist in his routine. Perhaps he was tired of feeling beaten up all the time. Whatever the motivation was, an unknown number of passengers and I piled into my compact car. Jake sat in front next to me. Looking at him and toward the back seat, I told everybody to buckle up and waited while they did.

A few weeks later, my visits with Jake took place in a hospital where he had undergone a series of tests. Doctors told him he had advanced AIDS, but he continued to deny his diagnosis. When I mentioned to him that he had AIDS, he immediately responded, "Look, I don't have AIDS. I don't know why that doctor keeps saying that. Don't believe him. He's lying on me."

The decline of Jake's distorted mind and worn-out body progressed. The invisible people's visits dwindled. They preferred staying home watching television, rather than spending time in a crowded hospital. Jake was taking tests and too sedated to notice them most of the time. Besides, they had his whole flat to themselves with him out of the way. Jake still kept me abreast of their activities the few times they did come to the hospital. They looked around and made sure he followed the rules. Eventually, he was transferred from the hospital to a secluded area in a nursing home on the other side of the city.

The stigma attached to AIDS caused several people, including some of Jake's friends and family members, to treat him with contempt. Some felt he deserved the disease for being gay. Others avoided him because they were afraid the disease was contagious if they touched him or had contact with things he had touched. After researching AIDS, I thought I would be safe as long as I avoided contact with his body fluids. I noticed that staff members treating him always wore gloves.

When Jake finally accepted his approaching death, he requested that a close male friend come visit him. Maybe he was the same man who had told Jake to leave his house earlier. This simple request for a visitor meant everything to Jake because he knew he would die soon. The friend refused to come, saying he didn't want to see him in that condition. Jake was left with his last request denied.

I participated in Jake's end-of-life care, along with his daughter Cherelyn, a young woman in her twenties who showed real concern. We saw each other a few times at the hospital and started comparing notes regularly on the phone. After discussing Jake's worsening condition and his impending death, we realized a lot needed to be finalized before he died. Personal information about him had to be gathered. We contacted insurance companies and former employers. We explored every possible death benefit. I was impressed with Cherelyn's dedication in staying centered as we completed various tasks. Trying to be her cheerleader, I advised her when she experienced obstacles. When I asked her why she stuck by Jake when several other family members hadn't, she said, "I always looked up to Papa Jake. He's the first person in my family to finish high school. He kept me going until I finished high school myself. That means a lot to me. Plus, I love him as a father. Even though he didn't raise me, he did what he could. His life has always been hard with a lot of rejection."

I admired her as she nurtured Jake at the nursing home. Neither of us had handled a situation like this before, but we made good progress. We talked and learned as we stumbled along in this new territory that confronted us with thoughts about life, death, and people's reasons for acting in negative ways during a crisis. In the midst of all these responsibilities, Cherelyn struggled to take care of her husband, children, and job duties as a waitress. She mentioned several family incidents of disloyalty toward Jake that frustrated and saddened her, but she never faltered in her personal devotion to him.

Knowing how stressed she was, I offered to write Jake's obituary for her. But Cherelyn felt that was something special she had to do herself. Writing in an informal voice, she soulfully described times she remembered with Jake. Sprinkled with exclamatory bursts of excitement like "Papa Jake's the greatest!" with a few typos and misspellings, it was the sweetest, from-the-heart obituary I've ever read. This young woman made of topnotch titanium was a living example of service being nothing but love in work clothes.

One quiet night, Jake lay quietly with a morphine pain patch on his chest. The damaged car of his life had reached its final destination. His previously fluctuating breathing eased slowly into a silent breeze. He closed his weary eyes for the last time as his engine stopped. The invisible demons left for good. His only stalker was Death.

Without either of us realizing it, Jake had introduced me to hospice care. I thought my experience with him was a once-in-a-lifetime occurrence. Like a flowing river, time passed while I labored to swim with the current. A year later, an acquaintance named Sam broke down crying in the parking lot after an exercise class we attended. I only knew him from the class, and he had stopped coming regularly. He told me he had been diagnosed with AIDS. He had kept this secret from others as long as he could. Because he had been absent so often from his job at a hardware store, he knew he couldn't go on working much longer. Family problems increased his need for help. His story resonated with déjà vu that I had no desire to revisit. Perplexed that a similar crisis could be happening to me again, I imagined familiar thorns invading my life's pruned rose garden.

Sam's stable mind concentrated on improving his health. He acknowledged he had AIDS and committed to fight for his life. He knew the time had come when he would have to tell others his secret. We both knew judgment and rejection would follow. I became a better listener by staying quiet while he rambled on about his plans for coping with his illness. He had already started his treatment regimen with a doctor. We went to his clinic appointments together sometimes. His nurse taught him a complex system of using pennies to keep track of the many medications he took around the clock.

Ongoing nausea and diarrhea suppressed most of his desire to socialize with others. He didn't seem to have many friends who were supporting him. Rotting teeth continued to add anguish to his growing list of illness issues. Hoping to get some help, he finally went to a dentist. The dentist examined his mouthful of decayed teeth and promptly announced, "Your teeth are all beyond saving. Any work done to replace them would be extensive and also expensive. There's no reason to go forward with this anyway. You have AIDS and probably won't be around much longer." Some words are better left unsaid or said differently, even when they might be true. The dentist's response angered Sam tremendously. He saw this as another hole in his rapidly sinking life raft.

Sam and his family disagreed on several matters. A few relatives had concerns about visiting him at his home. This bothered him because he felt they thought he would contaminate them with AIDS, even after he had explained to them that he wouldn't. In spite of these problems, there was definite support from a few family members who genuinely cared about him. On rare occasions, relatives came by to visit him. But usually he visited them at their homes.

Even though Sam mentioned seeing a few friends now and then, something was still missing. That something was communication with people who shared his condition, people who could hold on with him to the raft of one another, people who lived his inner turmoil like the rest of us didn't. He joined an AIDS support group and attended regular meetings that offered him opportunities to share his feelings with others who had AIDS.

Sam explained to me, "We go around the room, say our names, and talk about our problems. I thought my situation was bad, but I was surprised to hear about other people who are worse off than me. Some people are out there by themselves with no support, except for this group. I was also surprised to see somebody else there that I knew. This was awkward at first, but later on, it was a relief seeing a familiar face. At first, I didn't want to talk to anybody in the group because I didn't trust them. I felt like I didn't know them well enough to tell them my personal business. Finally, I loosened up. They are the only people who really understand what I'm going through, so I had to open up to them. I know they help me."

"How do they help you?" I asked.

"Well, when I'm with them, I feel like I'm not the only outcast in the world. You think I don't know what I look like in the mirror? That I don't remember how built my body was when I went to exercise classes? I do. Now, I look like a bony freak. I can see why other people stare at me and move away. I'd probably do the same thing if I was in their shoes. But when I'm with my support group, they don't care how I look. They can see past the ugliness of my outside. It's like I'm fighting a war with other people like me on my side. We tell each other any information we know that will make our lives better. Even when it looks like I'm losing the war, they give me hope for the future. I give them hope, too."

Knowing how important this kind of communication was to Sam, I started collecting books for him about people with AIDS. Reading about other people who had what he often called "the virus," he stayed home many days resting on a bed full of his own bones. He delighted in reading words spoken by loving families and friends of people who lived and died with dignity, in spite of society's obstacles and the overall trauma of the disease. Their powerful words formed a rope he could hold onto when the temptation to surrender pressured him to let go.

Christmas came with all the usual holiday gatherings and excitement. Sam remained miserable about his declining condition. He knew his days were numbered and that every holiday could be his last. I had a live, decorated, tabletop tree sent to his house to cheer him up. I could not have imagined how ecstatic he would be about receiving that tree. Displaying it in his living room, he took great pride in reminding guests, "This is a real tree, not a fake one. It came in the mail to my front door. And guess what? It had all the decorations on it!" Not wanting to throw his tree away, he managed to plant it in the back yard after the holidays ended. Even after the tree died, he still wanted to replace it with a similar tree.

(Continues...)

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Excerpted from Becoming Dead Right by Frances Shani Parker Copyright © 2007 by Frances Shani Parker. Excerpted by permission.
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