By: J. Scott Janssen, LCSW
I should have seen it coming when I slipped on the bullet casings strewn across the front steps. Or when I rang the doorbell and heard an angry-sounding voice bellow, “Who are you and what do you want?” I identified myself as the hospice social worker and waited. After what seemed like hours, I rang again. This time the door opened to the sound of an electric motor, revealing a cluttered hallway stacked with cardboard boxes bursting with yellowed paper.
I called out to the angry voice for permission to enter.
“Come in if you want, but keep it short.”
I followed multi-colored wiring leading from the door’s motorized arm, alarm system, and security camera. It snaked down the hallway and into a side room from which the voice seemed to have emanated. A mirror was tilted such that I could be seen from the room but could not see into it. The wires merged with a large tangle spiraling in from all directions swallowing a computer with lights blinking and flashing. On the computer screen, alternating images flashed from what appeared to be four of five surveillance cameras. Jack sat next to this command center, scowling. His burly frame, wild eyes, and the serpentine scar running from his right ear to chin reminded me of the ogres I’d read about as a child who, if you were foolish enough to approach their lair, suddenly appeared and pummeled you with boulders.
“I don’t need a social worker,” he growled.
I’d read his medical history—respiratory disease, diabetes, hypertension, skin ulcerations that just wouldn’t heal, a long history of uncontrolled pain. And a single line entered under “Social History”—patient can be hostile and combative.
Our visit that day consisted mainly of him telling me what a bunch of incompetents his medical team had been and why it was their fault he was in such bad shape. He alluded to talks he was having with his lawyer and how he would “settle with those cranks” before he died. He came across as angry, self-righteous, and abrasive. And, yes, hostile and combative. He was also very secretive, refusing to tell me anything about his life except that he’d been in law enforcement and that he had a brother in New England with whom he hadn’t spoken in years.
The visit tension hit its high note when I asked if he was having any suicidal ideation. It was a reasonable question—an ex-cop with guns, over sixty-five, male, socially isolated, terminal illness, secretive, hyper-vigilant, apparent anger issues, wanting to be in control but facing increasing physical decline, protective of his privacy but needing help, possible impulsivity, possible depression, possible aggression, possible PTSD—but Jack didn’t see it that way. He hit the roof.
Over the next many months, I called him regularly and offered visits, bracing each time for rebuff and/or complaint. He either declined my offers with the contempt of someone for whom it was transparently inconceivable that my presence might be of even the slightest value, or he accepted, it seemed to me, just to make my life miserable. Even on days when the conversation was civil, he remained secretive and suspicious, dismissing invitations to process thoughts and feelings or engage in deeper reflections, sticking instead to his intellectual interests like criminal psychology and comparative religion. No conversation, however, remained civil for long. He always found his way back to things about which he was angry, always went back on the attack. When I pointed this pattern out, he accused me of peddling boiler-plated psychobabble and, seeing no irony, went right back on the offensive.
The nurses on the hospice team fared even worse. He fired three of them for various imagined affronts. Because of his wounds and lack of a caregiver, they had to make three visits a week to change his dressings. He refused to take medications as directed, and then yelled at them for not controlling his pain. When one of them suggested he shouldn’t shoot his 22-caliber rifle or his 10 mm handgun while taking narcotic painkillers, he fired her. When I agreed with the nurse and asked him to put the guns away or face being discharged, he almost fired me, too, before begrudgingly agreeing to keep them out of arm’s reach whenever we were around.
It wasn’t long before he was threatening to put our hospice on the growing list of places he was planning to sue. Complaints tumbled out like rapids tumbling through a narrow canyon after a hard rain: we were lying to him; we were talking behind his back; we wanted him to be in pain; we wanted him dead; we were incompetent; we didn’t care about him or any of our patients; the only thing we really cared about was bilking Medicare.
Funny thing was, despite his sarcasm, complaining, and opposition to almost everything our nurses suggested, Jack’s medical condition was stabilizing. Steady care from our staff and Jack’s reluctant willingness to listen to a few recommendations here and there allowed his wounds to begin healing. His blood sugar was controlled, and so was his blood pressure. He even began taking more pain medication and getting more sleep at night. Taken together, his underlying respiratory disease began appearing more chronic, less terminal.
When Jack was finally discharged from hospice service because of this stabilization, I was relieved. I walked away thinking I knew him, thinking I’d seen him, and glad to be done with him. As far as I was concerned, he was an egotistical bully. He was insensitive, foul-tempered, devoid of empathy as well as the most remedial signs of social or emotional intelligence. Although I admired the determination and discipline it took to live alone with all the challenges he faced, these were no excuses for being a mean-spirited, anger-addicted pain-in-the-neck.
The picture was fixed in my mind; the story solidified into an unassailable truth. Over the next year or so, I thought about him whenever I passed by the narrow dirt road leading into the woods that wound to his secluded little fortress. Sometimes I felt relief that I’d never see him again. At other times, I had a sense of dread that sooner or later, he’d be back.
On the morning I saw his name once again listed under the previous day’s new admissions, I swallowed hard. He’d been transferred from the hospital to our inpatient facility for additional symptom management before going home, presumably in a few days. I played out various scenarios in my head through which I might get him assigned to another social worker. All such plotting was, of course, futile. Images of the angry ogre hurling boulders and shouting obscenities floated through my mind. I was certain more trouble lay ahead.
Since there was a social worker at the facility, I put off visiting for a couple days. When I finally went looking for him, Jack was coming in and out of consciousness and having periodic confusion. Chances were good he would never make it home. He was sleeping that day, and I did not wake him up. I walked out the door thinking I was off the hook. I could leave and not return. Then I thought about how much he’d loved his little home out in the woods and how tenaciously he’d worked to stay there. I thought about him being in an unfamiliar place surrounded by strangers, coming in and out of those mysterious states of consciousness that can emerge near death, and not knowing where he was. Part of me actually wanted to see him, if only so he’d see a familiar face. I decided to go back the next day and try again. So what if he threw me out?
The visit was to be our last. I walked in, and Jack was awake. He smiled wide and held out both arms as if to hug me. My first thought was that he was confused. “Hi, Jack. Remember me?”
His smile broadened (something I’d never seen before), and he said, “My social worker.”
He clasped my hand and continued holding it throughout the visit as I sat beside the bed. “I feel so much better now that you’re here,” he said.
Masking my surprise, and wondering if he was being sarcastic or setting me up, I asked him about what had been going on recently.
“It’s been a hard time.” His eyes appeared to water slightly, “I think I might be dying.”
No secretiveness, no defensiveness, no complaints, no blame or attacks. Tucked into the bed where he’d soon die, he was no longer fighting to stay home, no longer fending off threats, real and imagined, to the safe little lair in the woods with the alarm system and security cameras. His memory and concentration were taxed, and he had a hard time finding words, but slowly, methodically, Jack searched for language to describe and process what he was experiencing.
At one point, he lost his train of thought but somehow managed to make a humorous play on words. When he grinned, I cracked a joke. To my utter amazement, he started laughing harder than I’ve ever heard any patient in his shape laugh. His laugh was so genuine and infectious I couldn’t help joining in, and before long, there we were, two guys sitting in a hospice room holding hands and laughing so hard I thought Jack was going to need oxygen. The waves of laughter continued. Each time they started to subside, one of us would crack another joke and begin another cascade. The theme of all these jokes was fundamentally the same—what a strange and crazy thing it is to be human, and thus, so full of that paradoxical, very human, blend of shadow and light.
When the laughter finally waned, we sat silently. Jack squeezed my hand. I asked him what it was like to know he was dying. His voice was weaker, as though the laughter had used up all his energy. “It’s not as hard as I thought it would be,” he whispered.
I waited to see if he would expand on this, but he didn’t. I offered the thought that in some ways, and in some cases, living can be as hard a job as dying. He grinned widely and nodded his head in agreement, whispering, “Sometimes living is harder.”
His strength was ebbing. He appeared to be falling asleep. As I rose to go, he opened his eyes and gripped my hand with what felt like all his remaining strength. I sat back down and asked if there was anything more he wanted to ask, say, or talk about while I was there. “I’m sorry about before,” he said.
I strengthened my grip and smiled. “It’s good to see you, Jack...I mean, it’s really good to see you.”
For years, I’d talked with social work interns and those new in the field about the importance of seeing beneath the storms that might be roiling the surface of a person’s life and not letting these disturbances become definitional. Storms can be fierce. When the winds of terminal illness are howling, people may act in ways that appear hostile, manipulative, or aloof (just to name a few). Storms can be compelling, and it is easy to become stuck here. But this is just the surface. We must try not to be distracted on the surface for too long, however compelling the storm may seem. Beneath the surface, each person, however their troubles may be affecting them, has wisdom, resilience, and the capacity for growth, insight, and connection. Somewhere down in the depths, the waters are calmer and there is the possibility for peace. Finding this place requires patience, kindness, and a willingness to suspend judgments and fixed labels. It also requires the courage to keep showing up and trusting that beneath the waves there is a deeper place with which those who are being buffeted can connect and from which they can act.
Somehow I had completely forgotten about this when it came to Jack. Yes, I’d continued to show up and listen without lashing back. I’d monitored myself internally, trying to stay grounded and not get hooked into the dramas, inviting Jack, whenever I could, to step back and find some perspective. But by telling myself a story about him that was based more on my frustration than on kindness, I missed him.
The truth is he really pushed my buttons. All I could see was the surface storm. When I walked away after his initial discharge, all I’d really done was taken a few snapshots of him while he was struggling with some of the hardest challenges of his life—desperately trying to remain independent and in control as he fought back his fear and the world closed in on him. I had allowed these snapshots to define him.
That last visit, Jack seemed like a tired old warrior finally ready to lower his sword, the last of life’s battles fought, nothing left to defend, nothing left to prove. His defenses were down, his heart, there all along, was opening into view. Before I left, I told him I’d be back to see him again in a couple days. When I returned, he was sleeping. When I came back once more, he was nonresponsive. We never spoke again. Jack, it really was good to finally see you.
J. Scott Janssen, LCSW, has been a hospice social worker for 20 years. He is author of the book The Dawn is Never Far Away: Stories of Loss, Resilience, and the Human Journey. He works for Duke Hospice in Durham, NC, and can be reached at firstname.lastname@example.org.
This article appeared in the Winter 2013 issue of THE NEW SOCIAL WORKER. Copyright 2013. All rights reserved.