Joe’s Story
Joe’s Story
This is my story about Joe, whose name has been changed. He is a person who lived with schizophrenia. He received his mental health treatment in the STEP Clinic at the University of North Carolina Department of Psychiatry, where I worked from 1995–2012. I worked with Joe from 1996 until his death from lung cancer in 2008.
Joe received Social Security Disability Income, SSDI. He had a work history before he became disabled by mental illness. His income was about $1000 a month — slightly too high to qualify for Medicaid. He had Medicare for his health insurance. Medicare pays for outpatient mental health treatment, essentially medication management and psychotherapy, but none of the enhanced services covered by Medicaid in North Carolina.
Medicare reimbursement is low, and many mental health providers in the community are not approved Medicare providers. However, Medicare helps fund graduate medical education at teaching hospitals, so it made sense that Joe got his care in a training clinic at a public medical school.
Our mental health reform in North Carolina excluded people with Medicare — an oversight, according to some former leaders of the state mental health system.
Psychotherapy, case management, family work and collaboration with psychiatry are the core elements of clinical social work practice with people who live with severe mental illness. Joe’s story describes how these pieces fit together.
Joe became my client in the spring of 1996. He’d been working with my intern for months. On one of our first meetings, I met Joe at his new apartment, and had the pleasure of handing him his keys. That’s the best kind of moment in my line of work: a concrete example of making a difference in someone’s life, especially someone who had spent time being homeless. My intern had done all the ground work with him to get him housed, and just missed being there when he moved in.
Joe came to us through a volunteer clinic run by psychiatry residents at the local homeless shelter. My intern, a graduate student who was in an MSW program at UNC, worked alongside the psychiatry residents in the clinic. She started working with Joe at the beginning of the academic year. He had moved to Chapel Hill after losing his housing in Durham. He had been in psychiatric treatment previously, but with Medicare as his only insurance, the co-pays were expensive and it was hard for him to afford the private psychiatrist who provided his treatment for schizophrenia. By the time he connected with the free psychiatry clinic at the shelter, he had gotten into crack cocaine. The cocaine use was new, on top of a long dependence on alcohol. His life was out of control, and he wanted help.
Joe wanted treatment for his mental illness and he started coming to our clinic at the UNC Schizophrenia Treatment and Evaluation Program, or STEP Clinic. My intern saw him for supportive psychotherapy and case management. From the social work perspective, case management is a key part of how we work with our clients. The term means different things in different settings. In our practice, it meant working with a client to make sure that basic needs were met: safety, food, shelter, income, social connection, and finding meaningful activity. As social workers, we take an ecological perspective, and consider the person in the social environment. Our interventions might be with the individual or with the environment. We work alongside clients to help them as they make changes.
The hard work of case management was complete by the time I started working with Joe. My intern had successfully connected him to treatment in our clinic, built a strong therapeutic alliance with him and coordinated her work with his psychiatrist. To address his substance use issues, she helped him identify a friend who was willing to be his representative payee for his Social Security benefits to help him make sure he didn’t blow his checks on cocaine. With the payee in place, he was able to start saving money and to plan for moving into an apartment. Without the cash to buy it, he was able to stop using cocaine. She helped him apply for housing assistance, and once he received a Section 8 rental voucher, helped him find a landlord who would accept it. (In 1996, it was still possible to get a Section 8 voucher. In the ensuing years, the waiting list for the vouchers was closed because there were so many people vying for the shrinking number of subsidies. By 2013, private landlords in Chapel Hill had stopped accepting the vouchers, displacing longtime voucher holders, including persons with disabilities).
In working with people who live with schizophrenia, it can be helpful to involve family. I encouraged my intern to reach out to Joe’s mother, with his consent. His mother emphatically said she did not want to be involved in his care. Joe’s estrangement from his family was a persistent source of grief in the time I knew him. He essentially had one friend, someone he had known for many years, the same friend who had agreed to help him manage his Social Security funds.
For many years, Joe had worked part-time in a bookstore. But by the time he ended up in the shelter, his stress level was too high for him to continue working. He was able to make it on his disability income with the help of a housing subsidy which meant he paid a portion of his rent, based on his income, with the voucher paying the rest. Joe’s situation demonstrated how a person with a severe, disabling mental illness could make it in the community with support for housing and other social needs, along with his medical care. He was also eligible for a small amount of food assistance, and help with heating costs in the cold winter months.
Joe’s apartment was in an apartment complex by a local mall with a grocery store. There was a post office across the street. He lived in a walkable community, and could take a bus to the hospital for his clinic appointments. But there was one catch: the apartment complex was in a flood plain, and was susceptible to flooding. Over the twelve years that I worked with Joe, his apartment flooded at least twice. His anxiety skyrocketed when it rained. He got cinder blocks to raise his bed off the floor and would wait in terror when heavy rains came.
After I connected with Joe, we settled in to a regular routine. Joe came to see me for one half hour of supportive psychotherapy every two weeks. He was well-engaged with his psychiatric treatment, and found the medications he was prescribed to be very helpful. They lessened his auditory hallucinations and eased his anxiety and fear. When we first started working together, I encouraged Joe to make more social connections — through joining a local clubhouse, or coming to group therapy. He always declined. He had learned to manage his illness through keeping to himself, and he wasn’t interested in changing. He even did his grocery shopping at 5:00 am so that he didn’t see people at the grocery store.
But his sessions with me were clearly important to him. I saw them as an important source of social support. We talked about his symptoms, and strategies to manage them. He was distressed by auditory hallucinations — voices that were derogatory, and the sound of running water. We’d look for precipitants: what made them worse. He felt they were random and unpredictable.
Joe was meticulous about his medications. He was well-engaged with his psychiatric treatment. Our clinic was a training clinic — he had the same attending psychiatrist over the years, but worked with several different psychiatry residents, who were training in the specialty. Part of my work with him included close coordination with his treating psychiatrist. It was easy to do through the monthly team meetings we held, and because our offices were located on the same floor of the hospital. In coordinating care, nothing beats walking down the hall to talk to a colleague.
Over the years, Joe continued to see his one friend on occasion: until they had a falling out. He didn’t talk to me about it. And he did start to see his mother on a more regular basis. She would come for a brief visit at Christmas time, and near his birthday. These visits were anguished: he wanted so badly to see her, but he was never sure when she would come, and he felt apart from the larger family. He was his mother’s first son, born to her first husband, when she was very young. That marriage had ended in divorce, and she had remarried. Joe never felt accepted by his stepfather, and felt like a black sheep in the family. He described her as a rock-n-roll mother when he was very young, and had fond early memories when it was just the two of them.
As I got to know Joe over the years, I learned more about him. He revealed personal history very slowly, and in tiny bits. He had been in the military. He was married once, and felt a lot of bitterness toward his ex-wife. He attended college, and regretted never getting a degree. He loved to read books, and he listened to NPR. He had gotten in trouble with the law after driving under the influence. He worried that there was a warrant for his arrest in a neighboring county.
Joe also had hepatitis C. He told me he thought he had contracted it from selling his blood plasma when he was living on the edge in the 1980s or early 1990s. But Joe was terrified of medical doctors. His psychiatrist and I would encourage him to follow up on medical issues, but he often refused. When he did agree, I went with him to get his blood drawn because he was so scared of the procedure. When he finally got into the hepatitis clinic, they told him his mental illness precluded treatment for the disease — the medication was likely to make his mental illness worse.
One of the cruelties for people who live on low incomes is the difficulty accessing dental care. Over time, Joe’s teeth were essentially rotting in his mouth. The prohibitive cost combined with Joe’s fear of medical and dental procedures meant that he had gone for years with no dental care. But together we hatched a plan that he was willing to pursue. If a person has high medical bills, they can qualify for Medicaid once they meet a deductible. I worked with Joe and the county Medicaid office to get him qualified for Medicaid after months of bills in psychiatry. We found a dentist who took Medicaid and would do a total extraction, and he was willing to go through the procedure as long as he could get dentures. Medicaid would not pay for dentures, but we had some special funding in our clinic thanks to private donors. The clinic fund could pay for his dentures.
Joe got through the dental extraction. He was on a liquid diet while he recovered and he lost weight. But he was thrilled with his dentures. He could smile again, and not be ashamed of his teeth.
After Joe lost the weight, he didn’t seem to regain it, and a few months later, it was pretty clear that he wasn’t feeling well. I attributed his decline in health to the dental extraction. He still didn’t want to see a medical doctor. But one day he called me, scared. He could barely speak. He was worried that something was really wrong. I asked him if I could make an appointment for him in a medical clinic. He told me I could. I was able to get him an appointment two days later and I offered to take him to it, switching from my role as psychotherapist to case manager.
At the internal medicine clinic, Joe met with a resident who performed a physical exam, and ordered a chest x-ray. I took him home after the appointment.
The appointment was on a Friday, and on Saturday morning, I decided to check the online medical record to see if there were test results. I saw the report on the chest x-ray: a large mass. There was also a note from the internal medicine resident. He had called Joe, and asked him to come to the emergency room right away for admission to the hospital. Joe had responded, “I’m sorry, I can’t do that.” And then he had hung up the phone.
It was a Saturday. I didn’t work on Saturdays, but I called Joe. I got no answer. I sat in my living room and thought, he’s either dead or he’s not answering the phone. I knew Joe, and I didn’t want to be too intrusive. But I was very worried.
I called Joe again on Monday morning. This time, he answered the phone. I was relieved. He was alive. I told him I had read the note in his medical record, and saw that the internal medicine resident had asked him to come to the ED. I asked him if he would go to the ED if I was with him, and he said he would.
Before I left to go pick up Joe, I called his psychiatry resident, one who had worked with him for a few months. I filled him in on the situation, and he looked at his medical record and his lab reports. He told me emphatically NOT to transport Joe to the hospital in my car. His sodium was extremely low and he might have a seizure. It would be dangerous to transport him.
I took the resident’s advice, and when I got to Joe’s apartment, I explained to him that I couldn’t transport him, and that we would have to call EMTs. That made him even more anxious, but he agreed. We called 911 and sat together and waited. When the EMTs arrived, they did a brief evaluation and said there was no medical emergency and they would not transport Joe to the ED. They almost laughed at me when I told them the psychiatry resident had recommended an ambulance, and told me I could call an ambulance service in Johnston county that would be happy to transport — and that would send Joe a bill for the ride. I took Joe to the ED in my car. (I later found out that his abnormal labs had probably been abnormal for a long time, and that he was very unlikely to have a seizure in my car.)
At the ED, Joe was quickly put in an exam room. More tests. And then waiting. I expected that he would get bad news, and I went out to the medical work station to check in with the physician who was evaluating him, to see how much longer we would be waiting. He nonchalantly told me, “He’s got lung cancer. I’ll come tell him soon.” I told him I’d like to be with Joe when he gave him the news, and a little while later he came in to talk to Joe. He had a mass in his lung, and there was lots of fluid in his lungs, too. It was cancer. He would need to be admitted.
Both Joe and I knew what this meant. I was glad that I was there with him. I asked him if he wanted to call his mother, and he asked me if I would. I had never spoken to his mother, as she had given such a clear “I’m not interested” when my intern reached out to her years ago. I called her, and got her on the phone. I told her who I was, and that I was with Joe in the ED, and that he had just been diagnosed with lung cancer.
And in that moment there was grace. With Joe’s diagnosis of cancer, he was taken back into his family. His mother came to the hospital almost immediately. He was admitted for a few days to draw fluid off his lungs and to get connected to oncology and a treatment plan.
In the clinic, we had just hired a new social worker who was implementing a community support program, the new service that was to be the linchpin of the mental health reform in North Carolina.
We created a support team for Joe. The two of us and his mother divvied up the rides to chemotherapy, the grocery shopping and other support needs. And we supported each other.
Joe’s family had a family reunion not long after his diagnosis. His mother took him home for the reunion. It was the first time he had seen some family members in more than twenty years. He had a 16 y.o. nephew who didn’t know he existed. He felt included, and loved.
We were all clear on how serious Joe’s cancer was. We knew there would not be a cure, but we all hoped for a decent quality of life in the time he had left.
Joe and I continued with psychotherapy, but the focus shifted. We talked about the end of life, and his spiritual beliefs. As a young man, he had a strong Christian faith, but he no longer held those beliefs. But he had a strong desire to go home. We talked about his final wishes, and he asked me to help him figure out how to have those conversations with his mother. He told me about the losses he still felt — with his wife, and a child he never got to know, and the years of exclusion from his family.
Joe got through a round of chemotherapy, followed by radiation. The mass shrunk. But then he got sick again, and was readmitted to the hospital. I went to see him just before I left to go on vacation. I think we both knew that it might be the last time we’d see each other. He thanked me, and I got teary. As I left him, I was relieved that his mother was there.
A few days later, I got a call from his mother. Joe had died. Not long after my last visit with him, the inpatient team had moved him to a unit where he could spend his last days in more comfort, and his mother was with him when he died. He had gone home. And I knew that more than anything he wanted to be with his mother at that moment.
During the course of Joe’s cancer treatment, he pretty much stopped hearing voices. He was able to focus on survival day to day, and reconnection.
My social work colleague and I went to his funeral. There was no question in our minds about going — we loved Joe, and had connected to his mother over the months of his cancer treatment. As I stood in line at the funeral home, paying last respects, I met numerous members of his family. They had questions about Joe. They wanted to understand his schizophrenia, and why he had been disconnected from his family all those years. His mother told me about how when he was a young man, he would spend hours at the pool, reading the Bible. They didn’t understand what was going on with him, and I imagined that his substance use also complicated his family relationships. I met his friend — the one who had been his payee for a while, until he got his life back under control. He didn’t understand why they had a falling out, but he understood Joe. We shared our grief.
I was struck with how his family could deal with cancer so well, but not his schizophrenia.
I often think of Joe and his family when I teach mental health professionals about working with families — that it’s good to engage the family early on, but that it’s never too late. We all want connection, and one of the cruelties of an illness like schizophrenia is that it can contribute to social isolation. That’s one of the essential benefits of psychotherapy: it can be a healing relationship. Joe and I focused on practical things in our work together: housing, medical and dental care, finances. But the heart of our work was in the relationship. I will remain forever grateful that he trusted me to help him reconnect with his family at the end of his life, and that he died in their embrace.
