Grief and Gratitude: Working with Stroke Survivors

Together

May we sit with wisdom and compassion

at the ancient fires
of dashed hopes
and lost dreams.
May the pain which brings us together
become the cave we enter
in reverent descent
and surrender
to what
IS.
May we have the courage
to bear this rebirth
together.
—Carol Howard Wooton

 

An Interruption

In 2005, our circle of six met in a poorly lit room of a community hospital. This afternoon, Tom had the floor. A former surgeon, he had been looking forward to cutting back his practice to spend time with his grandkids.

Tom had lived his life in constant motion. He had been a football star in high school and college before going to medical school. Now, at 67, he was paralyzed on his left side: his left forearm contracted in spasm, his once-dominant left hand clenched into a permanent fist in front of his belly, his left leg rigid below his knee. His chiseled face still handsome, he sat straight in his wheelchair, strong muscles supporting his torso—a powerful presence. But his eyes always gazed down; he barely looked at anyone.

“I used to be able to ski, drive, do everything around the house,” he said. “I loved my work. This summer, I planned to take the grandkids to the ocean, show them how to dive into the surf. What can I show them now? Nothing.” The other group members listened quietly to his grim litany; all of us recognized his truth.

One day in 2004, Tom had come home from work and eaten dinner as usual. His wife was in the next room when he felt himself lose balance and topple over. He called out to her.

“I’ve had a stroke. Call 911,” he told her from the living room floor. She made the call, then came back into the living room and sat her petite frame on Tom’s head until the paramedics came, knowing he would try to get up.

“I had it all planned out,” Tom said to us. “And now I can’t do any of the things that I want to do. All that time I spent in medical school and working hard while my wife raised the kids—this was supposed to be my time with my grandchildren.” Each week he repeated these thoughts while gazing at the fingers of his left hand, pulling each one out as straight as possible, then resting it on the arm of his wheelchair or in his lap. On this day, the door banged open, interrupting him.

In barged a large woman in a motorized wheelchair, which she drove fast and well. Her left leg was swollen huge, the bare right foot discolored, her skirt hem hardly covering the Foley catheter bag strapped around her calf. In a croaking voice, she declared, “There’s only two kinds of people in the world: keepers and assholes. And you’re all keepers!”

Everybody, including Tom, guffawed. Amidst the belly laughter, she zoomed over to our small circle, which had opened to give her room. She told us she had been sitting outside in the warm air for 45 minutes, thinking she was early. When no one else arrived, she’d opened every unlocked office door until she found us, arriving with only 30 minutes left in the session.

“Hi there,” she said with a wide grin. “I’m Alexandra.”

None of us could have guessed that day how much Tom and Alexandra would change each other’s lives.

The Group

When I’d spoken to Alex on the phone for the group screening, I hadn’t been sure whether I should allow her in at all. I could tell immediately that she would be a handful. She spoke nonstop. Her history included two violent deaths in her family and probable childhood verbal and physical abuse. There was no way to determine what aspects of her personality resulted from the innumerable medications she was taking, and what was caused by her stroke and or by PTSD. The nurse case manager referred her to me because of her complex medical conditions and because the psychosocial situation at home was especially difficult. Along with the stroke, which had left her completely paralyzed on her left side, she suffered from diabetes and lymphedema. Her husband was away at work or commuting during their waking hours, leaving Alexandra isolated at home with only the companionship of a part-time caregiver.

Any group therapist would have been concerned about the severity of her situation, her apparent need for attention, the feasibility of containing her, and the unpredictable impact she could have on others. However I also realized that she needed the group and had many stories that needed witnessing, as well as much wit and spice to offer her groupmates. And this was my mission: to create a community of belonging for stroke survivors to grieve, heal, grow, and keep hope alive—the space I wished I’d been able to find in the first years of my own “recovery.”

The Beginning

“I had a stroke in 1985. I was 38, with no high-risk factors.” Having just been minted as a licensed MFT, I was living a typically stressful existence building a practice and taking whatever jobs I was offered. It happened at a work-related event, a friendly barbecue for a support group of women Vietnam veterans which I co-facilitated. All of a sudden, I grew dizzy and wasn't sure if I was sitting up straight; the world receded to a distant buzz. I slept on the hostess’s couch that night, unable to drive home. When I woke to find I couldn’t stand, or even crawl, she brought me to the ER, where my husband met me.

The neurologist diagnosed me with a cerebellar stroke or CVA, etiology unknown, and gave an excellent prognosis: I would be fine, and it would take a while to learn to move again, to walk, to have a brain that worked at “normal speed.” When I asked what “a while” was, he hedged. “Six months from now, you and your husband will know,” he said finally, “but other people probably won’t be able to tell.”

Six months later, that was not true. Two colleagues who had suffered a stroke and a traumatic brain injury, respectively, told me, “Don’t worry about your progress for at least a year or even two. Just keep at it, no matter what.”

“You Don't Get It”

Before my stroke, I’d consulted with a therapist named Helen on my own cases. She was a smart, warm, empathic woman several years older than me with a well-established practice. Within 24 hours of my hospital admission, I asked my husband to call her: I needed her help in formulating a plan for handling my caseload. After we made arrangements, she continued to call me during my rehabilitation. Our regular contact reminded me of my professional-self while being a patient.

Returning home a month later brought me face to face with my new limitations outside the safe hospital environment. I was frequently overcome by waves of strong emotion, mostly frustration and sorrow. I determined that weekly psychotherapy would assist my physical recovery. My therapy with Helen began on the phone; when I was able to leave the house, my husband or a friend would drive me.

My neurologist had advised to me to wait six months before driving. After about nine months and many practice drives with my husband, I drove myself for the first time to Helen’s office. “During the entire drive from San Francisco to the East Bay, I held onto the steering wheel so tightly that my knuckles turned white”—not out of fear, but because I wanted the pressure of my hands against the steering wheel to anchor my attention. Without that strong sensation reminding me to keep my eyes on the road, I might have become so riveted by anything moving alongside me—the beauty of leaves dancing in the wind or the blue BMW passing me—that I might forget about looking straight ahead.

I was drained by the time I reached Helen’s office. “You made it! How was it?” she asked.

When I mentioned that it was hard for me to concentrate, she replied, “Oh, that sometimes happens to me, too. I’m driving and thinking about what I’ll buy at the grocery store or the calls I need to make.”

With a pit in my stomach, I realized, “She doesn’t get it. It’s not like that now.” I didn’t have words yet to tell her how it was for me, or to explain to her what she was missing. So I said nothing.

It happened that I also knew a therapist who had suffered a traumatic brain injury in a car accident. I knew he would understand, so I began to meet with him. Together we explored and named the difficult parts of our experience: slow thinking, unreliable memory, trouble concentrating, having to relearn everything, wanting to be “normal” while also being impaired. He supported me with anecdotes from his own experience and comments indicating that he understood. This was enough to allow me to go back to Helen and have the words to talk with her about our rupture.

“No, no, no, you didn’t understand,” I told her when I returned. “Part of me wanted to pass as normal, as someone who’s simply distracted by making a mental shopping list. Not being able to rely on my capacity to direct my attention was frightening.” As we talked, I came to understand that her well-intended response grew from her wish to join with me to help me feel understood and less flawed. Later, we also spoke of her fear and grief in the face of all my sudden losses.

Be Curious

As I learned with Helen and would keep learning in my group work, it’s essential for a therapist to acknowledge discomfort in the face of the sudden profound loss of physical, communicative, and cognitive capacities, all highly valued abilities that may lead to loss of social, family and vocational roles—loss of identity. Making assumptions that he or she understands is a great defense against that discomfort, but it doesn’t help the client.

Therefore, it is especially important to practice curiosity. When clients say something’s hard for them, ask, “How,” or, “What’s that like?” or “What’s that mean to you? Exactly what part of it is hard?” “Asking questions like these gives the survivor an opportunity to attend to inner experience and attempt to articulate it.” Stroke survivors’ process of authoring their own new stories enlarges rather than diminishes their sense of self.

The process of articulating a narrative doesn’t happen during rehabilitation, which currently averages 16 days in the U.S. There, the focus must be on the rapid regaining of lost function so the discharged patient can perform as many ADLs (activities of daily living) as possible: the basics like sitting up, transferring from bed to wheelchair, standing up, walking, toileting, climbing up and down stairs, swallowing, feeding yourself, putting your pants or bra on.

Since there is little time and training for rehabilitation staff to focus on enhancing the patient’s new identity, we therapists have a big job. It is all too is common for patients to feel diminished and “less than” in medical settings: imagine having to focus most of your attention on exactly what you can’t yet do. How we respond as therapists, friends, and family makes a big difference in the healing process.

Sometimes it can be hard for a therapist to remain curious when a client seems to simply repeat the same story over and over, as Tom did. But consider this: it’s exhaustingly hard work for an already injured brain to develop new neural pathways. This spurt of neuroplasticity is nonetheless necessary for both physical and emotional recovery. No wonder survivors often repeat the same stories; pure neurological exhaustion can lead anyone to opt for the better-established neural route. If you keep hearing the same story, you might want to say, “I hear you. You are working so hard just to stand up again.” Follow-up questions will prompt clients to experiment with new thoughts and stories.

Finding a Community

Even though I had loving friends and a devoted husband and family, I felt isolated when I returned home. After the crisis, my life consisted of weekly physical therapy—learning to walk again, regaining strength—and resuming tasks like buying groceries, balancing my checkbook, making dinner. Meanwhile, my friends and family went back to their busy lives. I was left moving through my day incredibly slowly, and mostly alone.

“I began to wonder: “Where do I fit now?” What were my chances for a career, or any role in society?” Would I be able to resume a full professional life like my colleague who had a traumatic brain injury?

Three months later, with the help of my therapist Helen’s consultation, I resumed seeing one client a day in my home office. Despite lingering but outwardly subtle attentional difficulties, I discovered that I could still listen deeply and skillfully to one person at a time. After walking my client to the top of my long stairwell, I had to rest for several hours before a simple dinner with my husband and bed. Still, this was a personal triumph, and the beginning of reclaiming my professional confidence.

I also began to search for a community group where I might find guidance and a place I could belong. City College of San Francisco had a program for Acquired Brain Injury survivors, but the organizer told me I was too high-functioning. Yet I was not high-functioning enough to occupy my own life in the way that I had before.

Through friends, I found my way to the Stroke Club, which met monthly at a local YMCA. First I was a guest speaker, then I became the volunteer co-leader. The group provided the opportunity to test my ability to perform professional functions I had used before my stroke. I was pleased to find that my attentional difficulties didn’t interfere with my ability to lead the group. In fact, I proved to myself and to others that I could still conduct a group class for a few dozen adults, using my skills as a counselor and educator as well as my personal experience to serve others as we learned to cope with life after stroke.

The Stroke Club provided social connection, education and some support. It was perfect for some, but it didn’t satisfy the therapist in me. My professional experience as a therapist working in a psychiatric halfway house and with Vietnam vets had taught me how potent small group intervention is for marginalized and stigmatized populations. I wanted to start a small group for stroke survivors. But how?

After hearing a local neuropsychologist give a talk to mental health professionals about his group work with brain-injured adults, I called him and told him my idea to organize a group for folks who’d had strokes. He suggested we talk more over lunch. He was very encouraging.  After we discussed logistics and recruitment, he asked me, “Are you going to volunteer to do this?”

“Well, I’ve been volunteering for the last two years and seeing clients in my private practice,” I responded. “I’d like to ask people to pay me. I am a therapist, after all.” In response, he expounded on the rewards of volunteering. It was as though he was saying, “Oh, you’ve had a stroke? I’ll let you volunteer. Oh, yes, I think you’re competent, but you want to charge money?” I held my ground, and was proud of myself for doing so, despite my own still-shaky sense of self-efficacy.

To his credit, he listened, thought about it, and said he would try to work out payment. A few weeks later, there was an envelope waiting for me in the staff mailroom of his hospital, St. Mary’s, where my group had begun. He had written me a personal check.

When I asked him about it, he told me, “We can’t get the money from St. Mary’s yet and I often make donations. I know you and think this is a good idea, why not help you launch this? Seems more important than giving to United Way.”

This was a pivotal moment. Not only was it a kind and generous gesture, but even more than that, it was a sign of the neuropsychologist’s professional dedication and esteem. Neither of us knew for sure where I belonged in the medical model—star patient or competent professional. The donation moved us both across an invisible threshold.

A Different Kind of Challenge

The loss of competence and control over his daily life was understandably trying for Tom, the former surgeon. During his first years with the group, he said no to every suggestion that his loving family offered, most especially his wife. He refused physical therapy. He refused occupational therapy, though his wife had already arranged his eligibility and prescription. “No, no, no, no.” The only suggestion he took was coming to this group, which his wife had also recommended, worrying about how little he left the house. She had to learn to tolerate Tom’s “no.”

It was easier for me, as the therapist, than for Tom’s family to see that “saying no was the only control Tom could exert in his life.” Still, I advised them that if they could just let it be and stop pushing, maybe he would say yes, but on his own schedule.

Of course, I did break my own rule occasionally. Countless times over the course of the group, I had given Tom the name of an extremely talented and competent physical therapist who specialized in neuro-rehabilitaton. Each week, I would ask him, “Did you call her?” And, like a high school student, he always had an excuse. “I spilled coffee on it.” Or, “I’m going to call. I just haven’t gotten to it.”

Finally, I called the physical therapist and asked her if she would come to the group in order to provide a short lecture and demo to all the members. She knew that I had referred her to Tom. When she came, she made a special pitch to him. We watched her use all her strength and skill to pull his contracted left arm as straight as she possibly could against the resistance of all its spasticity. His look of surprise grew into a smile as she uncurled his fingers one by one and placed them on his lap. It helped, of course, that she was confident and attractive. Finally, he asked her in front of the group, “When can you come over?”

Over the next several months, Tom progressed from being wheeled into the room in his wheelchair, to walking while holding onto the chair with his caregiver nearby, to using a four-pronged cane while his caregiver wheeled the chair in behind him.

The group witnessed and applauded his progress week after week. Nevertheless, Tom’s grief trumped all: “Yeah, but the wheelchair’s still here.” “Yeah, but this isn’t really walking. Walking would mean that I would be out there on my own again.”

Tom’s despair did lead him to make a suicidal gesture. I classify it as a gesture, not an attempt, because he did it at home, with his wife in the other room and the physical therapist scheduled to come.

After this incident, Tom didn’t return to the group for a while. When he did, it was clear something had shifted. Before his stroke, he had always been healthy and well adjusted. He had lots of great coping skills that had enabled him to focus on achieving external goals; he hadn’t had a reason to reflect on his interior life. Now, even though it was physically and emotionally painful, Tom was learning how to face and cope with his own despair. He began to see a cognitive-behavioral therapist who helped him utilize his intellect to gain insight into his own thoughts and feelings. In this way, he learned about depression.

When Tom came back, he was initially subdued, and at the same time, sardonic—a new sign of energy appeared in his eyes and voice. His mantra became, “Well, I guess I’m not going to be taking the grandkids to the ski slopes,” as opposed to wishing he could. He hadn’t yet fully accepted his new life, but he was getting there.

The arrival of a new group member soon afterward gave Tom the push he needed. George was also in his late sixties, a medical professional, and paralyzed on his left side. Only several months post stroke, he was still wheelchair-bound. But George had explored his dark side prior to his stroke: he’d been in a 12-step program for years.

One day in group, George addressed Tom point-blank. “You were a surgeon,” he said. “You knew what to do if you wanted out.”

Tom had met his match. No more BS. George called him on his actions, and set him some new expectations. He wanted Tom to be a role model. “How long did it take you to stand up on your own?” George would ask him. “What do you think about stem cell transplants? Neuroplasticity?”

They met man to man, and began swapping golf and football stories and off-color jokes. With George’s support, Tom not only became the group’s in-house physician and renewed his medical license: he had found a new role for himself.

Look for Wholeness

Tom’s struggles exemplify the profound grief and loss that can engulf a stroke survivor’s perspective. As the facilitator and a fellow survivor, it was hard for me to hear Tom’s despairing litany week after week. While the group had made space for Tom to speak his dark truth, I also knew from personal and professional experience that it was possible to move beyond the focus on what had been lost.

It is crucial for survivors and their therapists to know that recovery doesn’t stop at six months or a year, or even at two years. Now, with new research into neuroplasticity, we know that people can continue to progress 10, 15, even 20 years after a stroke. Although, there is no way to know how much healing is possible for an individual survivor.

Oftentimes, people become focused on regaining their capacity to ski, like Tom, or to go back to work. But if the goal is too concrete and narrow, they might be severely disappointed. It took a couple of years to go from mastering the stairs to my apartment to being able to walk six miles; in order to appreciate my successes, I had to stop comparing myself to who I had been.

Grieving is necessary, along with the acceptance that there’s a new normal. That’s why I hate the word “recovery”: it implies a return to a prior state. But moving forward from a stroke is not as simple as trying to get your life back to the way it was before, because it will never be the same.

So instead of aiming for the impossible goal of returning to a previous state, clients must re-imagine themselves and their lives. The term I have chosen, for lack of a better one, is “revisioning.” And neither feeling—the sense of loss nor the sense of possibility—ever goes away completely for a stroke survivor. “I think that the best outcome for folks with strokes is that grief and gratitude live side by side.”

A Good Boy and a Bad Girl

As the group progressed, Tom and Alexandra formed an unexpected bond. They seemed like polar opposites: he was the quintessential altar boy, the high school football star, the successful surgeon. He did the best he could at whatever was in front of him. On the other hand, Alex was a troublemaker who questioned authority, and who gave everybody a hard time probably from her first words. Tom and Alex had actually gone to the same religious school, but Alex had been suspended for asking questions about birth control.

When, week after week, Tom was stuck in his “yeah, buts”—“I walked a little further with my physical therapist this week, but it’s still not throwing a football” —Alex would finally be the one to say, “I’ve had enough of that. You’re just feeling sorry for yourself. Come on, I’m happy for you! You’re out there walking. If I could walk, I would be really happy.”

Tom would break his self-absorbed downward gaze at his spastic left hand and look at Alex, in her motorized wheelchair, who hadn’t stood on her own two feet in who knows how long and wasn’t going to be walking two inches. That stopped him dead in his tracks.

Alexandra’s directness and her outrageous sense of humor unfailingly got her the attention of the group, along with her stream of hilarious stories about her past traumas and clever triumphs during her checkered career. Her level of her socioeconomic dislocation and physical disability was also the most profound in the group. Her husband ended up losing his job, so they lived on food stamps and MediCal.

When Tom had been absent from the group following his suicidal gesture, I used the opportunity of that emotional upheaval to ask, had they ever felt suicidal? We all talked about our own moments of despair and discouragement. Alex’s half-joking response was, “Suicidal? Heck no. I might have felt homicidal.” And the truth was, that’s how she dealt with things. Because of the extent of her disability, she was constantly undergoing humiliating and painful medical treatments. Instead of becoming passive and defeated, she chose to be a “difficult patient.”

Alex had a suprapubic catheter, which went through a hole in her abdomen directly into her bladder and had to be changed weekly. Sometimes, predictably, this routine procedure was very painful. Once, Alex related a story about a nurse who replaced the catheter especially roughly, jamming his elbow in her face in the process. She begged him, “It hurts! Stop! Please stop.” When he ignored her, she bit his elbow hard enough to draw blood. She laughed raucously as she told us this story. And while we appreciated the comic relief, we were horrified at what she had been put through, and awed by her behavior.

Though I had initially worried about Alex dominating or disrupting the group, I learned to let her have her way and to let her speak. She also learned to restrain herself when I glanced her way. The group’s attention began to transform her. Alex was always self-aware enough to know that she played the role of the bad girl, and that she used her own humor as a defense. Over time, she began to able to talk about what was really difficult for her, without the defenses.

For instance, in order for Alex to get out of bed and be put in her wheelchair, because she was large and because she was completely paralyzed  on one side, a machine called a Hoyer lift had to be used to move her around. After several years, Alex began to talk more about her own sense of humiliation and discomfort around this device. She once told us that, moving her from her chair to her bed, her husband had dropped her by mistake. She told this story without her normal humor and outrage. She let her sense of vulnerability be seen and felt. The empathy and resonance in the other group members as she shared was palpable.

She also began to name some of the things that were especially difficult for everybody to talk about: What it’s like to be incontinent. What it’s like to wake up in a bed filled with your body fluids, and have to wait for somebody to come change you. Her bringing up these difficult moments in turn freed up some of the more reticent men to comment on the reality of those experiences for them.

So, as it happened, Tom, the good boy in the group, was learning from the “bad girl” about how to resist passivity and defeat in the face of his condition. And at the same time, the bad girl had gained the attention, respect, and admiration of the surgeon, the archetypal good father. Thanks to these relationships and the support of the group, Alexandra gradually moved from being the negative leader who challenged authority—mine and everybody else’s—to becoming a positive leader and thinking about herself in a constructive way. I believe that the group’s curiosity and openness to her perspective of the world allowed Alex to fully own not only her story but her personality, her own way of being.

Warrior Heart

The extent of Alexandra's transformation became clear to me when she organized an award ceremony for the group. She came up with the idea of awarding a former group member with the Warrior’s Heart Award. The award had been inspired by a group conversation I initiated about what it means to have a strong heart and be courageous. In that discussion, most of the members, including Alexandra and Tom, had agreed on John.

John was in his early forties, with red hair and an elfin smile. He used to be a chef, and still loved food. He was partly paralyzed and had expressive aphasia, which means he understood almost everything, but his verbal capacity was limited. He spoke primarily with gestures and facial expressions: his hand on his heart, wide smiles, quizzical looks. He had joint custody of his eight-year-old son, for whom he prepared meals with his one functional hand. And even though he was partly physically disabled and his speech was limited, he was always out in the community, swimming, grocery shopping, helping with events at a local community center. When people saw him around, he was always happy.

When Alex brought up the idea of the ceremony, I agreed it would be wonderful. I decided to wait and see if she was serious about putting effort into helping to make this happen. Several months later, Alexandra approached me about it in the group. “What about the celebration, Carol? Are we going to do this? I really want to.”

And so, with the group’s help and Alexandra’s leadership, we put on the First Annual Keeping Hope Alive Warrior Spirit Award Ceremony. It was moving to see her in her new role: as a leader, an organizer, an eloquent writer. For the award ceremony, she composed a poem that captured for all of us the strides we continue to make together as a group:

“John, you stand tall
your head above others, your back straight.
You are universally liked, your friends, legion. You inspire
us with your dogged
persistence in the face of challenges that defeat others.
Your warrior spirit proves to the rest of us, you are our representative
as we stand upright against the vagaries
of our conditions, and proof we will recover,
and contribute to each other’s success.
Thank you for being who you are:
Our warrior spirit.”

[This article was written with the consent of the group members portrayed therein.]
 

Motivational Interviewing in End-of-Life Care

Betty: A Case Study

When Betty answered the door and welcomed me into her living room, I couldn’t help thinking she looked almost like a different person from the Betty I’d seen just the day before: a neatly dressed, very composed 80-year-old woman. Today, her clothes were messy, her hair was disheveled, and she had bags under her eyes. Her husband, Frank, was resting in their room after his morning nursing visit. He had been diagnosed with prostate cancer a year earlier, and the treatment had been unsuccessful. The hospice team of which I was a member had been called in to assist with the final few days of his life, which is why we had met Betty and Frank the day before.

The nurse, spiritual counselor, and I had visited the couple in their home, as this was where Betty and Frank preferred for him to pass away. During the initial visit, Betty had engaged appropriately, was very pleasant and cooperative, and asked common questions about what to expect in this process. She had hired a caregiver for further support. She seemed to be coping well and had a strong supportive network with her children and neighbors. Frank had been a bit lethargic, but was able to engage with us as we discussed his care over the next few days. The visit had gone smoothly; we hadn’t expected any unusual problems.

But the morning after the initial visit, the nurse called me explaining that she had completed her daily visit and Frank had declined significantly overnight. He had been very lethargic and difficult to arouse during her assessment. Betty had asked the nurse if she could feed her husband, since he had only a few bites of food at dinner the night before and had not had breakfast. The nurse had informed her of the risk of feeding when a patient is closer to death, but felt that Betty was very resistant to this information. The nurse was calling me to ask if I could meet with Betty to address this resistance.

As a social work intern, this would be my first meeting alone with a client. As I was simultaneously enrolled in a graduate course on Motivational Interviewing, I decided to put my beginning skills to use.

Engaging the Client

I began by checking in with how Betty had been feeling since our visit the previous day.

“I feel good,” she said, “but I had a hard night last night with Frank waking up several times. He was moaning and confused, and even tried to climb out of bed. It really scared me, but I was able to call hospice and they walked me through giving him some medication to calm him down. It worked quickly and I was able to get some rest for a few hours.” She paused and touched her forehead absently. “I’m glad to have our caregiver here this afternoon so I can lie down and get more sleep. She was so helpful yesterday.”

I remembered from my MI course that open-ended questions, affirmations, reflections, and summaries (OARS) are key to building rapport and conveying empathy and understanding. When clients feel heard, they are not only more inclined to engage with the practitioner, but they are also more comfortable processing their ambivalence, and eventually reaching a resolution. I knew that Betty had had a fraught conversation with the nurse that morning, and that she must be feeling overwhelmed, so even though we had limited time, both in the session and in terms of Frank’s life, I began slowly.

“Wow,” I said. “It sounds like you had a difficult night caring for him. Caregiving for someone in the dying process is challenging. I’m really impressed that you’ve been doing this, while also recognizing you need some help and have hired a caregiver. I’m glad you called our main line for support, too. We’re always available to help.” The simple reflection and affirmation I used helped us start the visit well. Betty knew I was present and listening to her. I was also able to validate and affirm the challenges of providing caregiving at end-of-life and how well she was doing.

“I understand you met with the nurse this morning,” I continued, now that I saw Betty relaxing a bit in my presence. “How did that go?”

Betty paused and her voiced dropped. “Fine. She told me I should stop feeding my husband, but that’s hard because he could be hungry.” She paused again and then raised her voice. “She said that feeding him could hurt him, though. I’m not going to be the one to kill him!”

I reflected that Betty felt confused about what the nurse had told her about feeding.

Betty raised her voice again and spoke more quickly. “It’s really confusing. And it’s like she doesn’t really understand where I’m coming from.”

“She doesn’t see how much you value feeding Frank,” I nodded.

This exchange confirmed for me that Betty was struggling with understanding and accepting that her husband no longer needed to eat or drink as he was declining quickly. As the nurse had explained to her, feeding him would have likely caused more harm because as his body declined, it would not metabolize food and fluid as well, which could cause increased toxicity, pain, and discomfort.

Given the medical nature of this information, and especially because of the urgency of the situation, with Frank having only a few more days to live, it would have been tempting to believe that Betty’s inability to understand could be solved by intellectual persistence: maybe if someone explained the details to her again, she’d “get it.” But using an MI framework, I saw clearly that Betty needed to be met emotionally in her struggle before she could comprehend the medical problems that continuing to feed her husband would create.

In situations where there is a clear preferred outcome, it is often challenging for counselors and other helping professionals to steer away from what in MI is called the “righting reflex,” the temptation to tell the client what is best for her and what she ought to do. But this technique does not support client autonomy or self-determination, and defies the MI belief that the client is the expert. It also tends to pit the client against the therapist as an adversary or an authority against which to rebel. Telling Betty to stop feeding her husband could have caused her to shut down and damaged any trust she had in me that I understood her situation. Furthermore, the righting reflex may have robbed Betty of the opportunity to process her loss.

Change Talk

 It is important to note that Betty acknowledged that she heard that feeding could be harmful and even said, “I don’t want to be the one to kill him.”

MI emphasizes two concepts called “sustain talk” and “change talk.” Clients engage in sustain talk when they discuss the status quo, or give reasons why they cannot make a change. Betty had been engaging in sustain talk thus far in our conversation, going through her reasons for believing she should continue to feed Frank. Change talk, which is any mention of change as a possibility, marks a client’s willingness and preparedness, however slight or tenuous, for change. A clinician using MI should emphasize and explore a client’s change talk through reflections and open-ended questions. This allows the client to focus on change rather than maintaining the status quo.

Betty’s statement that she didn’t want to be the one to kill her husband identified her ambivalence and was an example of change talk. It let me know that Betty was open to exploring the possibility of refraining from feeding her husband in this final stage of his life, though clearly she had not yet reconciled herself to this option.

Before we examined the change talk, I wanted to reflect Betty’s ambivalence and confusion while stressing how much Betty loved her husband and wanted nothing more than to give him the best care possible. “You’ve really taken on the role of being his caregiver and part of that role is feeding,” I began gently. “The way you see it, just because he’s at the end of his life doesn’t mean you should stop that role now. And as you said, he could be hungry.”

Betty sat forward in her chair. “Exactly!” she exclaimed.

Sensing I had struck a chord with her, I continued. “You also said that you heard the nurse explain that feeding could be harmful.” Here I was able to focus on both sides of the issue: one the one hand, feeding was part of her role as caregiver, and on the other, she was aware that it was risky and could likely cause more harm, which she didn’t want.

“Yes, but I don’t really understand why,” Betty said, her voice heavy now, and she slumped back in her chair a little. “I know if people don’t eat, they die, so I don’t want to have that guilt that I’m not feeding him and he dies. He’s my husband, and I want to do the best job I can.”

Noting that Betty was moving back into sustain talk, I continued with affirmations and reflections to build a sense of alliance. “You have taken excellent care of your husband, and your family, for the sixty-four years you’ve been married. Feeding is not only part of caregiving, but also a way you show your love for him, which is something I definitely understand. It sounds like if you stop feeding him you’re scared that it could hasten his death, which would make you feel guilty, like you’re responsible for him dying.” I was able to use this complex reflection—drawing on Betty’s implied statements and feelings as well as the words she spoke—to assign meaning to the feeding, explore the sadness of her changing role as a wife, and allow her to process the fear of hastening her husband’s death.

“Yes,” said Betty. “I’ve taken care of everything all these years. The cooking, cleaning, laundry, shopping. And he likes that I do those things. I want to take the best care of him all the way until his last breath.”

I affirmed her role by saying, “Something I’ve seen from you in the times we have met is that you are a very dedicated, loving wife, who wants nothing more than to care for your husband, especially at the end of his life.” I began to understand that Betty’s roles as wife and mother were not only central to her relationship with her family, but also to her personal identity. Although cooking and her other activities seem like minute household chores, these activities were how Betty showed her love for her husband and children. If she was no longer feeding, how could she express her love, especially at this most intimate time in life?

As I reflected Betty’s deep desire to provide the best care to her husband in his dying process, she became tearful. “I’ve cared for him for so long,” she said, “and I’m feeling very overwhelmed about this. I just can’t believe he’s dying. We’re high school sweethearts. I can’t remember life without him.”

I could really empathize with Betty in that moment. Although she had been able to understand intellectually that her husband was terminal, the emotional impact of the dying process weighed heavily on her. Thinking about what her life would be without her husband was devastating. “This experience has been really difficult and emotional for you,” I said. “It’s hard to even imagine life without him.”

With tears filling her eyes, all she could say was, “Yes.”

Ambivalence, Not Resistance

 I was sensitive to not push her too far. We still needed to address the feeding, and if she became overwhelmed with grief, it would have been inappropriate to have that conversation. So I continued to affirm her. “I see just from listening to you that you and Frank are so incredibly in love and have been for a long time. You’ve created an incredible life together, have two wonderful children, three beautiful grandchildren, all are an extension of you two and represent your life and your love for each other.”

Reflecting on the lives patients and families have shared is a vital component in helping them experience a peaceful death with dignity. Processing their lives affirms they were special and facilitates closure. Here, affirming Betty’s desire to continue providing loving care helped her to feel understood and acknowledged. My acknowledgment of the specialness of her bond with Frank seemed to calm her down a bit.

I decided this moment was the opportunity to provide some education about Frank’s state, but first I needed to ask permission. Asking permission is essential in MI because it gives the client control of the session. In a careful tone I said, “Maybe if we could clear up some confusion about the feeding, then that could help you feel a little better and assured that you are taking the best care of Frank. Would it be okay if I shared some information with you about feeding at end-of-life?”

“Yes, I’d be okay with that,” said Betty. “The nurse just didn’t explain it to me well.”

“I can understand,” I said. “Sometimes we think it’s clear because we have this discussion often, but the family needs a little more education and I’m happy to provide that.”

“Yes. I just cannot understand how eating could be harmful.” She had become quite agitated again, her shoulders tense and limbs tense.

Maintaining a gentle tone, I explained, “It seems very unclear because when the body is healthy, it needs nutrients from food. As a person gets closer to death, the body doesn’t need the same amount of nourishment as it did when it was healthy. The body slows down and its metabolism slows down, so the food cannot be broken down at the same speed as when the body was healthy. Now that Frank’s body is slowing down, he can’t digest food in the same way, so the food and liquid gets kind of stuck in the body, causing more harm than good. I know that sounds strange, but does that make sense?”

She seemed puzzled. “So he can’t break down the food?”

“Exactly,” I told her.

I was becoming hopeful that Betty was beginning to understand the risks of feeding and we were about to make a break in resolving her ambivalence. But then she responded, “Well, what if I just give him less food?”

I suppressed a twinge of impatience. That question made me see that she was still unsure and possibly resistant to stopping the feeding. But although resistance can sometimes be frustrating for practitioners, an MI practitioner always rolls with the resistance and should avoid the righting reflex in times of client ambivalence. Betty’s question was simply her way of expressing that she was still unsure what was right.

Resisting the urge to use the righting reflex, I calmly said, “Well, sometimes that can be okay, but if the food is not soft and thick, there is a risk that it could go into his lungs and he would aspirate. That could cause an infection and actually hasten his death.”

My hopes that this education would help move discussion along were quickly halted when Betty said, “Oh. Well I’m glad to know this, but even if I gave him just a little, it couldn’t hurt him that badly, right?”

A Circuitous Route to Change

I was unsure how to move Betty out of her now entrenched sustain talk. Betty was trying to argue for feeding, even just a small amount of food. Sustain talk can be difficult to address, so I decided to offer some compromise and then affirm and reflect. With empathy, I said, “Well that is something that we can discuss with the nurse. I would just like to affirm what the food represents in your relationship. This is the way you’ve shown your love for your whole marriage, so that’s hard to stop that now. I know you don’t want to hasten his death by not feeding, but the scientific knowledge we have indicates that feeding could be more harmful.”

Betty immediately interjected with more sustain talk. “But he may be hungry,” she protested.

“I think that’s a great point,” I replied. “Unfortunately, we don’t know for sure if he is hungry or not.”

Betty interrupted and asked, “Do you think it’s better to not feed him because it’s more dangerous?”

I realized that Betty was looking to me as an expert, and as the hospice social worker, I was more of an expert on the issue. This is another temptation to resort to the righting reflex and simply use my authority to tell her she couldn’t feed him. But I reminded myself that this was Betty’s life and I did not know what was best for her. Any decision I made for her, she could still reject. She had to come to it herself. Furthermore, I needed to support her self-determination and autonomy. “Well, I think it’s better that you do what you feel most comfortable with,” I told her.

Betty appeared to appreciate this point as she sat back in her chair and relaxed her shoulders. My statement affirmed her autonomy and validated that I supported her self-determination. I realized I may not have acknowledged before that the choice had to be hers.

Although Betty had relaxed, she was somewhat hesitant. “I just don’t know,” she said. “This is so hard.”

I knew then that I needed to help Betty navigate the pros and cons of this decision. For this, I used an MI technique referred to as a decisional balance. Betty already had the information about the advantages and disadvantages of feeding and not feeding, but I needed to help her sort through them.

I asked Betty, “Well, what are some of the dangers of continuing to feed Frank?”

Betty reflected for a moment. “Well, he could choke. And you said the food could get stuck and he could aspirate.”

“Yes,” I replied, adding, “The body also cannot digest the food well, so it could store in his body and cause an infection. And what are some of the good things about continuing to feed him?”

Betty looked puzzled, but said, “Well, he wouldn’t be hungry.”

I gently replied, “Yes. If he is hungry, which we don’t know for sure and likely never will, the food could satisfy his hunger. But if the food doesn’t break down correctly or pass through his stool, then it could be more painful for him.”

Using the term “pain” seemed to resonate with Betty. Her eyes widened and she sat up in her chair. “Oh! I hadn’t thought of that. It could cause him pain?”

“Yes, think of it like this: if you eat more food than your body can handle, you get a stomachache. Now imagine not being able to get that built-up food out through your stool. That’s likely what it feels like.”

Betty smacked her arms down on the armrest and said, “Well, I definitely don’t want him to be in pain. Do you think that his pain and agitation last night was because I gave him some mashed potatoes?”

Betty seemed ashamed by this prospect. She moved in her chair and did not make eye contact with me.

Sensing her uneasiness, I softly said, “You know, we will probably never know. I’m glad that you knew to call for help when he was having new symptoms. That was very intuitive and shows that you knew what to do in a crisis.” I did not want Betty to feel guilty, because a number of factors could have played a role in her husband’s symptoms.

I wanted to return to the decisional balance to speed up our arrival at Betty’s decision about feeding her husband. “What are some of the bad things that could happen if you stop feeding him?” I asked.

“Well he could be hungry and that would make him more uncomfortable. But after talking to you, I'm not sure if he would be hungry because maybe he’s just too sick to be hungry,” Betty said sadly.

“So you’re thinking maybe he’s hungry, but we don’t know for sure. You also see that he could be far enough along in the disease process that his body isn’t feeling hungry anymore.” She nodded. To continue with the decisional balance, I asked, “And what would be the benefits of not feeding him?”

“Well you said that feeding could cause infection, so if I don’t feed him hopefully he won’t get sicker. Maybe he would live longer?”

A Breakthrough

I was so relieved to hear change talk: an acknowledgment of the possibility that Betty might stop feeding her husband. I felt that we were finally getting somewhere with her ambivalence. “He could live longer, and maybe even be more comfortable,” I told Betty.

“Yes, I want him to be comfortable,” Betty nodded.

“I want you to know that we really do understand how confusing it is to not feed your loved one at the end-of-life,” I affirmed. “It seems so unnatural because feeding is typically associated with us feeling better. And also with your relationship, feeding is not only part of your role as his caregiver for the past sixty-four years, but also the way you show him how much you love him.”

I wanted to ensure I normalized Betty’s ambivalence regarding feeding at end-of-life, as this is something that hospice clinicians discuss with families every day. Like many therapeutic interventions, normalizing is useful in MI because it makes clients feel comforted that they are not alone. This is especially critical in hospice because family members often feel isolated as their loved ones transition through the dying process. Affirming and normalizing Betty’s confusion regarding feeding, while also providing a complex reflection of Betty’s role as caregiver and how she expressed her love, helped us transition from the issue of feeding to ideas for how Betty could continue to express affection towards her husband in his final days.

“If we can brainstorm together other ways you could express your love,” I continued, “then maybe we can implement those into your caregiver role. Maybe things that are less risky, like reading to him, holding his hand, playing music for him. How does that sound?”

“That sounds nice. He loves reading.” A note of relief emerged in Betty’s voice. “We used to go to the library together and get books. Sometimes he’d read to me at night.”

“Wow,” I replied, “that is really special. So now you could maybe do that for him.”

She paused briefly. “Yes, I think he would like that. But can he hear me?”

Again, I wanted to avoid jumping into an expert role here, especially with what must have been an emotionally loaded question for Betty. “Well, what do you think?”

“I’m not sure,” she said. “He doesn’t respond like he can.”

“Would it be okay if I gave you some information about senses that some other families like to know?” I asked.

“Of course,” Betty said, “You’ve been so helpful, I want to know.”

“Well, we always ascribe to the belief that if there is breath, then there is hearing. Some studies have shown that hearing is the last sense to go before someone dies, so I always tell families to behave like their loved ones can hear them.”

“Yes, you’re right. I think he can hear me,” she said hopefully.

Peaceful Passing

Betty’s husband lived just two more days after this visit. I learned from the nurse that Betty’s husband declined even more the day after our visitand was actively dying, so I followed up with Betty and her children with telephone calls to assess the status of feeding and how they were coping. Betty and her children all confirmed that Betty had not tried to feed her husband again after our visit.

I learned from my bereavement telephone call that Betty spent the last two days she had with her husband reading his favorite books to him, writing him a long letter that reflected their life together and the impact it had on Betty, playing their favorite music on an old record player, and holding his hand and providing a supportive presence.

My visit with Betty not only provided her with important education about her husband’s dying, but also helped her process some of that anxiety so she could help Frank’s dying process be more dignified and peaceful. Like so many of the families I see, Betty needed someone to validate what she was feeling and also hear, understand, and affirm what feeding represented to her relationship with her husband.

Motivational interviewing skills, such as reflections and the decisional balance that I used with Betty, have been effective in my clinical practice with hospice patients and families who experience ambivalence with administering morphine for pain, hiring caregivers, or asking family members for help to protect the primary caregiver from burnout, and processing denial related to rapid decline.

Often families I work with are extremely concerned with doing everything “right,” so affirming that they are doing an excellent job caring for their loved one is very important for them because the feel empowered and validated. Although they may not be ambivalent about providing care, they are still at risk for becoming so overwhelmed that effective coping and a healthy life balance are damaged. Emphasizing individual strengths through genuine affirmations empowers the caregiver and results in better care and support for the patient. The patient having a peaceful death with dignity is not only valuable for the patient, but also for caregivers and family members as it decreases their risk for complicated bereavement.

The spirit of MI is rooted in the notion that the practitioner and client have a collaborative relationship. Once that relationship is established, the practitioner is responsible for evoking the client’s motivations, perspectives, and autonomy. Starting the visit with exploring and reflecting Betty’s motivations, understandings, and feelings regarding feeding allowed us to make progress on this issue. If I had come into her home telling her why she should not feed her dying husband, she likely would not have listened. Furthermore, she would not have had the opportunity to process their life and the emotional impact of her husband’s death.

MI techniques emphasize and foster a collaborative therapeutic relationship, which is critical in hospice work, and more generally in working with individuals and families coping with terminal illness. We clinicians are not the experts in our patients and families’ lives or their dying process. Using MI techniques not only helps hospice patients and families process their ambivalence, but are also extremely valuable in conveying empathy in a way that moves towards change.

My work with Betty was the first experience I had in applying MI to my clinical work in hospice. I was initially unsure how the MI skills, specifically reflections and affirmations, would help Betty resolve her ambivalence, but this experience showed me their value. I believe that my ability to avoid the righting reflex and simply repeat back to Betty her confusion and fear helped her feel heard and validated. The reflections also allowed her to process her thoughts that supported the ambivalence. These skills helped us establish a collaborative relationship as I was sure to never make her feel I was the “expert.” Although Betty saw me as more knowledgeable of the issue of feeding, I was not more knowledgeable in what was best for her. These skills allowed me to use the decisional balance, which ultimately led to her resolving her ambivalence and not feeding her husband again.

I feel tremendously honored to have the opportunity to work with hospice patients and families. Being present with patients in their dying process, and supporting their families as they navigate the demands of caregiving and effects of anticipatory grief, is an incredible privilege. I believe strongly that everyone deserves a peaceful death with dignity and am passionate about being part of providing that experience to all of my patients and families.  

Psychotherapy with Older Adults: Unjustified Fears, Unrecognized Rewards

I am a geriatric clinical psychologist. I love working with older adults. I have often wondered, though, why there are so few of us around. Ten thousand people in America turn 65 every single day now. There is an accelerating rate of this already underserved segment of our society, and there is a huge and growing but untapped market of potential revenue for psychotherapists wanting to expand their practices. Why, then, are there so few psychotherapists actively working with older adults? While it is estimated that 70% of psychotherapists see adults on their caseload, only 3% of them have had formal training in working with older adults. What has stopped clinicians from getting training that could be so valuable in their professional development? Despite the general finding that the motivation and attitude of the older adult toward psychotherapy is as positive as it is in other age groups, many clinicians doubt this nevertheless. As I began working with older adults, I confronted these issues, and as I did, I found new joy in my work. What I discovered was this: I have as much to learn from my older clients as they may have to learn from me.

Many clinicians prefer not to work with older adults, and I have a great deal of respect for those preferences. In my own practice, I'm not inclined to work with children or adolescents. Oftentimes, though, the therapist’s preference is based on a view of older adulthood that is grounded less in fact and more in myth. When I first started seeing people in nursing homes, I felt like a fish out of water. I was trained in two of the best graduate psychology programs around, but when I was in a nursing home, I was consumed with doubt and fear.

It was 1999. I had just become licensed as a psychologist, and I was offered a job with a firm that brokered psychological services to nursing home residents. I was excited about making a living as a psychologist, energized about venturing into this new application of my skills, and eager to ply my trade—that is, up until the first week I actually saw clients! It was then that the reality of working with older adults eclipsed my fantasies of doing so. It was then that I confronted my awareness that this was incredibly challenging work for which I felt ill prepared.

My main fear: could my cognitively compromised clients even benefit from psychotherapy? I asked myself, How much of my work with them could they actually comprehend? How capable were they of working through their emotional struggles and inner conflicts? To what end would our psychotherapy serve if their lives would soon come to a close? I was overwhelmed with confusion, uncertain of my effectiveness, and scared I might be practicing outside my area of competence. Out of an amalgam of fear, guilt, and good sense came a series of consultations with a wise geropsychologist, and it was there that I began my schooling about the cognitive, emotional, and functional eccentricities of the older adult.

I am here to tell you, though, that 13 years later, I have come full circle. My acquired knowledge and experience in geriatrics have been invaluable, but I see now that, with respect to the essence of effective psychotherapy, it turned out that I had been sufficiently trained to do the work all along. Becoming technically proficient as a gerontologist has taken me on an invaluable path, but I see now that my former fears about conducting psychotherapy with older adults were driven almost entirely by my own introjects from the social stigma of aging. That’s what this article is about—to describe my own journey as a clinician framed within the cultural mythology around aging.

Myth #1: Psychotherapy with the elderly is time wasted, because the elderly client has so little time to enjoy any gains that might be made.

There is a film released in 2011 entitled Beginners, for which Christopher Plummer won the Oscar for Best Supporting Actor. The story involves a widower who, at age 75, joyously begins living a sexually authentic life as a gay man. To justify such a change, how many years should this man have left to live? Is the length of time he would have to enjoy his newfound emotional freedom really the issue? I am reminded of the elderly client who responded to her therapist’s query why she wanted psychotherapy by saying, “It’s simple; all I have left is my future.” At age 49, Freud is well known for having contended that anyone over 50 was uneducable, and I wonder if some of our biases working with older adults might stem from this overstated assertion.

Due to a very severe stroke, Estelle had for some four years been living in a nursing home. At 75, this was her home now. She was referred to me because she could not stop getting into heated arguments with other residents, and she was sad a lot. She had a history of drinking moonshine; she had been an ironworker and a barmaid, drove a semi, and had graduated high school with honors.

As with most nursing home residents, she was on a ton of meds, including an antidepressant, two anxiolytics, and an antipsychotic. When I first met her, she told me she had multiple personality disorder (which wasn’t the case), but due to her stroke, she did have memory problems and severe aphasia (difficulty expressing herself with language). In fact, her aphasia was so pronounced that it took her as long as a minute to express a complete sentence. She grinded out each word—one by one—with persistent determination. Her desire to communicate was relentless, and this was what allowed her to stay connected to others.

My psychotherapy with Estelle lasted two years, and I learned a great deal from her. I learned about the incredible courage and fortitude it takes to cope with an abusive upbringing, the loneliness and isolation that can accompany nursing home life, and the debilitating physical ravages of vascular dementia. I also learned about the connection that occurs between two souls—where words are often not needed.

More than her aggravated depression, though, Estelle wanted to work on emotional abuse issues from her childhood and the disparaging way her mother and father had treated her. She was open to the idea that those images—and the ways she coped with them—were influencing how she related to others and to herself. And this was how we approached her psychotherapy.

I am tempted to say that Estelle was a wonderful psychotherapy client, but the temptation to do so implies that it was Estelle’s characteristics that made the therapy meaningful. It was not. What made the psychotherapy beautiful—even reverent—evolved from the exceptionally meaningful way the two of us found to communicate with each other. And not unlike Victor Frankl’s odyssey through Auschwitz, what was most meaningful to me was to witness Estelle’s search for meaning in the limitations of her own life.

In the beginning, our therapy focused on relieving her depressive and angry feelings, and Estelle made comments like,

I have been fighting lately—it’s enjoyable … and it’s not enjoyable. It relieves tension, but I am crying all the time. If I told you all that is going on inside of me now we would have to meet all day!

Take a minute and think about her, though—grinding out each sentence—me wondering where in the world it was going to go—waiting almost interminably for each idea to unveil itself—and to eventually experience just how wondrous it was to witness such life-revealing self-reflection. How could a therapist not marvel at the human capability that was co-existing with such daunting a physical disability!

As our therapy progressed, the emotional work Estelle and I did together chronicled her evolution in becoming a more whole person. She created a process where she found her inner self in a way she had never done—developing her own autonomy and independence by resolving longstanding introjects that, for the first time in her life, she was now ready to expel. Toward the end of our work together, she proclaimed,

I’ve overlooked myself … but I can discover me … I can see the good inside me now. That surprises me to hear myself say that, but I see I will make it … and I know now who I’ve been angry at, and I see that I don’t need to be angry at everybody anymore. I’m not quite proud yet, but I do like being alone with me now … I really do enjoy my company. I’m on my way.

When I began doing psychotherapy with older adults, I didn’t realize that the kind of emotional and spiritual trek that Estelle would make was more similar than different from the journey I made with clients in other age groups. This is my joy of working with older adults—to see them unveil to themselves and to me their indomitable wisdom. For me, this is a revelation perhaps most profound in those who have lived with their darkness for so long.

Myth #2: The grief, loss, and somatic and socioeconomic burdens of the elderly are too excessive to warrant believing they could get better.

There is a great deal of pessimism about doing effective psychotherapy with older adults. Many of these clients have limited resources to face unimaginable social, medical, and economic struggles, and many clinicians tacitly believe that the elderly’s frustration, deprivation, fear, and dependence are so emotionally injurious that no amount of psychotherapy could really help them. When I began my psychotherapy career with the elderly, I wondered about these things too. With experience, though, what I learned was that it was not my clients’ deprivation and burden that was too excessive—it was my own. It was my inability to cope with my fears and frustrations working with excessively burdened people, and I was projecting these issues into my elder clients.

Marge was a ten-year resident of her nursing home. Legally blind, she had a longstanding diagnosis of mild mental retardation and had been institutionalized with paranoid schizophrenia for much of her life. When her mobility began to fail and her dementia and other medical conditions became too much for her family caretakers to manage, she was admitted to a skilled nursing facility. In order to address issues of depression and to help her manage her psychotic symptoms, for almost three years I saw Marge weekly for psychotherapy. I wondered if the odds of Marge overcoming her burdens were too great. I wondered if she could fight the good fight. What I came to learn, though, was that I was actually asking that of myself.

Like many people with schizophrenia, Marge was an isolationist, and this often exacerbated her psychotic symptoms. The structure and consistency of our weekly visits, though, allowed her to quell many of her paranoid thoughts, and she made remarkable progress. For the first time in many years, she was successfully managing most of her troubling and longstanding paranoid symptoms. Her solitary lifestyle, however, unintentionally reinforced her chronic feelings of loneliness.

As does happen sometimes, changes in my own life forced me to turn her psychological care over to another clinician, and we spent two months planning for the transfer. As you might imagine, my concern was that my departure would lead her to regress into further isolation. As it turned out, though, my underestimation of her strengths and concerns about her succumbing to her fears were a projection of my own issues.

In the waning weeks before my departure, Marge began to voice her sadness with our impending termination, and this was clinically therapeutic for her. She also began to tell me about the new and pleasant experience she was having on "the boat," so asked her about it.

Marge: "I will miss you."
Dr. Kraus: "Yes. It's sad that our therapy together is going to end. You have made great progress, and I am proud of you. I know you will continue your good work with Dr. Hamilton. … You had mentioned to me about a boat. Can you tell me more about it?”
Marge: "Oh, yes! We travel around."
Dr. Kraus: "Do you, now! Where have you been?"
Marge: "Well, we're going to France."
Dr. Kraus: "Really! How nice! It sounds like a cruise ship."
Marge: "Not really.{whispering} It's a submarine, but you can't tell anyone."
Dr. Kraus: {with curiosity} "How come?"
Marge: "Because they might throw me off!"
Dr. Kraus: "I see. What's it like for you traveling to all these places?"
Marge: "There's a group of us … my roommate … and a few more … and Nancy {one of her nursing assistants} … I like it."
Dr. Kraus: "That's terrific. It sounds like you're seeing that while you are sad our therapy is ending, you also see that you will have some good friends here with you after I am gone."
Marge: {Smiling and in a very calm and self-assured voice} "Yes, I will." 1

And so it was with Marge that I learned two very important lessons: 1) even with a mentally retarded, schizophrenic, aging nursing home patient with dementia, extraordinary things can be accomplished, and 2) the fears and discounting of her strengths that I imagined within her were really projections of my own.

Myth #3: Old people are staid in their ways; they are too stubborn to change.

In some of my geriatric workshops, I ask the audience what the four essential signs of aging are. Invariably, they will say things like grey hair, illness, and memory loss. Then I tell them my four: wisdom, confidence, character, and strength! I tell them that I threw them a little curve-ball, but they get the point that we often ignore or minimize the tremendous assets and capacities possessed by older adults. We overfocus on their liabilities and underrecognize their strengths. We miss how many competencies increase with age: appreciation, authenticity, desire to help, maturity, patience. Being stubborn can imply having mettle to take a stand and stick to it, and it is often quite effective for a psychotherapist to run with a resistance than to try to overcome it. It also occurs to me that to say that the elderly are staid may again say more about the patience, optimism, and confidence of those who serve them than anything else.

In Psychotherapy with the Elderly, psychologist George Bouklas offers an extraordinary account of a conversation with Errol, an 82-year-old patient of his with mild dementia, who entered a nursing facility for rehab following a colostomy. Errol never accepted his surgery, was constantly angry and agitated, and would routinely resist medical care. He was referred to Bouklas for ripping off his colostomy bag and spreading its contents across the room. He then would ask the staff what the fuss was all about! Here’s a powerful and provocative excerpt from their therapy:

Errol: (in an angry tone) "I stopped spreading shit on the floor.”
Bouklas: (silence)
Errol: "I told you, I stopped spreading shit on the floor! You act like that doesn’t matter! Well, does it matter to you?”
Bouklas: "Should it matter to me?”
Errol: "I thought you might be proud. The room doesn’t smell like shit anymore.”
Bouklas: "What’s wrong with the smell of shit?”
Errol: "You mean you liked it?”
Bouklas: “I like everything about you, no matter what it looks like, what it sounds like, or what it smells like.”
Errol: (now weeping) “You son of a bitch, if you’re lying to me I’ll kill you.”
Bouklas: “If I was lying to you I would deserve it.”2

Errol is typical of most elderly clients in that their stubbornness is a defense, albeit maladaptive—an indication that something more loathsome, more unacceptable, more humiliating may lie beneath. From my point of view, the word “staid” is an exemplar to some extent characterizing every psychotherapy client.

All clients resist—they all hold on to old patterns of thought and action. Resistance is the sin qua non of all psychotherapy, and it is no less true of the elderly. But when clients are unblocked, when resistance evaporates, psychotherapy with the elderly is an amazing thing. When we can help our clients abandon their defenses—even for just a moment—we create in the therapy a transcendent experience that elevates and inspires. It takes something special to really dare to live, and I feel privileged to witness them doing it. If we are open to our undeniable emotional connection to our clients, we can truly witness their transcendence—and it then emphatically becomes our own. With the elderly client, the metamorphosis is no less exalting, no less divine.

Growing old changes the way people relate to themselves and to others. The aged are often dealing with three principal issues: (1) how to adapt to the biggest transition of their lives—their changing health, the idea of getting older, and their changing family and work roles, (2) how to cope with the grief and loss that accompany their advancing age and decreasing abilities, and (3) how to manage their interpersonal relationships with others. As people advance in age, they go through an immense life transition—their role in their family changes, their view of themselves as a healthy person changes, and their sense of their own longevity and mortality changes. If kept silent or hidden, the feelings underlying these transitions often get acted out in disguised forms. Listening to and being there for the elderly client is invaluable to them not only because it makes available a problem-solving process that may ameliorate their distress, but also because it brings a heightened sense of connectedness and bonding with you. When this happens, they are not alone, and in that moment, neither are you.

Grief over family that's passed on, sadness over their sense of lost usefulness, loss of their former and more active pursuits that once gave them so much pleasure all make it more difficult for aging people to emotionally cope with their circumstances. Simply listening with supportive understanding and making meaningful emotional contact can bring them a sense of calm and solace. More than that, though, most of my older clients have the capacity for and can benefit from deeper emotional work. Not always are they aware they are engaged in such work, but my experience has been that it doesn’t really matter whether they are aware of it or not. It can go on, and they can reap the benefits of it nevertheless. Although the person's memory for recent events may be lacking, long-term memory, especially for well-learned actions, events, and knowledge, is one of the last cognitive abilities to decline. By helping them share something important and meaningful about their own lives, you bring into your here-and-now relationship with them the feelings of closeness they have experienced or longed to experience with others. In my view, this is so important in facilitating the growth process.

Geraldine was one of my depressed nursing home patients. Her Alzheimer's was at a moderate stage, and she could not remember my name to save her life. I met with her every week for months, and at every session she had trouble recognizing me. "Its Dr. Sparky," I would say. The social worker at the nursing home who introduced me to each of the residents there liked telling them my nickname, and that's how everybody soon started knowing me. When she would hear this, Geraldine's brow and eyelids would rise ever so slightly. "I'm your psychologist," I would say. I would prompt her recall with a verbal sketch of my role and why we were meeting. With this, you could begin to see her recognition building and she began feeling more at ease with me. I never really knew for sure that she actually was recognizing me, but it really didn’t matter, because she felt more comfortable with me.

As a rule, Geraldine's mood was irritable, she had a cynical view of the world, and she isolated herself excessively. Keeping to herself was a real problem for her, because she had begun to develop sores on her backside from lying in bed so much. When she wasn't in her bed, she was lying in her recliner. Her sores were becoming so severe that the medical staff felt they would soon threaten her life. Despite forgetting who I was and what we had talked about the week before, after a number of sessions together she began to learn that she could trust me. This is not learning that is taking place in the cerebral cortex but learning that new neuroscience research explains is occurring at a subcortical level. One thing was true—I enjoyed her sarcasm, and she could see that. I encouraged her to socialize more with others, to give others a second chance, but it was not my expertise or even my words that made a difference—it was her trust in me that eventually allowed her to risk taking my suggestions to heart.

You see, underneath her rough exterior, Geraldine really was a sweetheart. As she allowed herself to trust me, she learned that she just might be able to trust others as well. As she allowed others to know her, they began to see her sweetness, too, and as she socialized more, her depression began to lift, she spent less time in her bed and chair, and her sores began to heal.

Along with her physical healing, Geraldine experienced a significant emotional healing. Just how emotional healing occurs in therapy is still quite a mystery, but for Geraldine, it seemed to occur at a level that went well beyond what she could articulate in words or what she could remember. In this sense, her Alzheimer's did not prevent her emotional recovery. Her learning seemed to take place not within her cognitive self but as a consequence of how she felt about her relationship with me and, later, with others. Communication with her took place beyond words, beyond logic, beyond conscious thought.

“What I learned from Geraldine was that in psychotherapy, words are overrated—I learned that it is the relationship that can heal.” I have often mused about how insightful my interpretations were in a session and believed how it may have been my pithy comment that was a turning point in the therapy. That seems almost never to have been the case. When my clients recall their own turning points in therapy, it almost never has to do with anything I have said but almost always relates to something I have done or been for them. Being with them in their “staidness” may be the most effective thing I do with my older clients.

This type of healing occurs because an emotional reconciliation is reached within the aging client that has more to do with restored faith, with renewed hope, and with enhanced trust in the world, in themselves, and in their relationships with others than it has to do with cognitive functioning per se. Granted, cognitive decline generates fear, anger, suspiciousness, loss, and any number of other difficult and challenging emotional experiences—but the aging process impairs emotional functioning on a biological level only in its final stages. And that's why many people with Alzheimer's can be comforted and counseled, can feel support from others, and can reach a greater sense of peace with their experience. It's your empathy that eases their suffering. It's your empathy that cultivates their sense of joy in the life they might see they are blessed to be living and can give thanks to have lived.

How Clinicians Get Stuck: Some Emotional Risks in Working with the Aged

For several years, I led a biweekly consultation group with psychologists and master’s-level clinicians interested in learning from their own experience with their elderly clients. Some of what we discussed had to do with gerontology, cognition, testing, contracting, and the like, but much of what we discussed related to the emotional lives of the clinicians when they were with their clients.

Despite the growing evidence on the effectiveness of psychotherapy with the elderly—even with those who have dementia—psychotherapists underserve this population of clients. One of the reasons for this stems from how clinicians defend against the knowledge of their own physical and emotional mortality and the terror of their own vulnerability and dependency. I believe that this is especially true in psychotherapy with the dementia patient, where, in some form, the death of the cognitive self is confronted.

Another reason psychotherapists shy from involvement with older adults arises from the necessity for therapists to manage their own unresolved internal representations of parental and grandparental figures. Much has been written about how the older client sees a younger therapist as a younger (adult) child. When this occurs, the client needs to work through issues within the therapeutic relationship that mirror unresolved issues in the client’s relationship with his or her own children. Younger therapists, especially, can have a difficult time addressing an older client’s provocative comments like “You’re just a kid. What do you think you know about what I am going through?” In the reality of older adulthood—where the older client is increasingly dependent on younger caretakers—the unjustified but prejudicial attitude that older clients can develop toward their younger therapists can be exceptionally challenging.

It is generally understood that psychotherapy occurs within an intersubjective field—where the therapist and the client affects and is affected by the other. At some level, the therapist is always experiencing what is emanating from the client, and the client is always projecting into the therapist his or her needs, fantasies, and stereotypes. And the therapist cannot help but do the same. When skillfully observed, this can lay the groundwork for significant therapeutic gains. The therapy progresses when the therapist is aware of these processes and can use them to move the therapy forward. The less therapists are trained to do so, or the more they are hampered by their own complete internal resolution, the more likely that these processes will be acted out within the therapeutic relationship, and the less likely these processes will be therapeutically worked through. The less therapists are aware of their own projections, the more their idealized and devalued stereotypes of “old age” will unknowingly creep into the therapy, and the meaning they unknowingly assign to “old age” will color their relationships with their clients. Signifiers that should alert therapists that they may be developing distorted attitudes toward their clients are:

  • the assumption that an elderly client would not benefit from therapy,
  • the assumption that medication would be preferable to psychotherapy,
  • the attitude that a client may be too old, too stubborn, or too burdened to benefit from psychotherapy, and
  • prominent feelings of boredom, anxiety, or frustration when with a client.

In America, we honor the young for their beauty, strength, and vitality. However, in other places on the globe, old men and women are objects of veneration. This leads to a curious consequence: the less we acknowledge what can be respected, admired, or even venerated in the parents and grandparents of the world, the more we make ourselves orphans who lose a piece of our faith, security, and connection to a past that we risk repeating. This has been part of my joy in working with older adults: I am able to honor them, to sit at their feet, marvel, and learn. As their therapist, I have become their faithful student, their privileged witness, and my life is ever richer because of it.

Footnotes

1 Kraus, G. (2006). At wit's end: plain talk on Alzheimer's for families and clinicians. West Lafayette, IN: Purdue University Press.

2 Bouklas, G. (1997). Psychotherapy with the elderly: Becoming Methuselah’s echo.Lanham, MD: Rowman and Littlefield.

Its the Psychiatric Meds, Stupid!

I was getting ready to close up shop and leave my practice for the day when my secretary announced that one of my clients was in the waiting room in a hysterical panic pleading for a session with me. This came as somewhat of a shock to me inasmuch as I felt this client was actually progressing quite well.  I told my secretary to send her right in.

The client was crying so hard I could barely understand her verbalizations, but strangely enough the precipitating incident was a visit to her psychiatrist's office. As she calmed down I got the gory details. The client told her psychiatrist that she was doing extremely well.  That's a good thing, right? She then went on to explain that her therapy sessions with me were very helpful and thus she had turned her life around.

Her psychiatrist responded with a sinister chuckle and told her in no uncertain terms that her that the therapy sessions with me had done nothing. Instead, he suggested, she had been the victim of a nasty chemical imbalance and that the psychiatric medicines he prescribed had made all the difference. My client balked at the idea, stating that she made some cognitive and behavioral changes as a result of the psychotherapy and that his biochemical explanation was totally negating her work in the process. The psychiatrist's anger then began to escalate and he became louder and more belligerent. He insisted that the therapy and the client's volition had nothing to do with it.

The session reached a point of no return when the psychiatrist took her chart and physically hurled at her (wasn't that professional?) as he yelled, "If you really believe it was the therapy and not the psychiatric medication then go find yourself another psychiatrist." He then stomped out of the room. Since I'm a card carrying therapist in good standing please indulge me as I paraphrase the good doctor, "It's the psychiatric meds stupid!" This served as the trigger for my client breaking down and coming to see me. (Hmm? If you have a gander at one of your behavioral science dictionaries, I've got this uncanny notion the term iatrogenic illness will ring a bell here.)

I agreed with my client that counseling and therapy had been very valuable to her. Nonetheless, since I was the therapist at the center of this battle royale I just I had to know how she knew for sure—I mean 100% sure—that the medicine didn't make all or part of the difference.

"Oh that's easy," said the client as her face instantaneously blossomed into an ear-to-ear grin, "he's been giving me those pills for three years and I've never swallowed a single tablet."

Psychotherapy with Medically Ill Patients: Hope in the Trenches

Psychotherapists who work with medically ill clients often feel adrift between two seas. One ocean is the fast-paced world of medicine, in which we, as medical consultants, must efficiently develop complete answers to complex questions. The other ocean involves the deep and dark undertow of emotions: our clients are often dealing with terrifying bodily limitations and unknown outcomes. As therapists, we are called upon to integrate and understand the hypomanic world of medicine, while helping our clients tolerate the unfair and arbitrary aspects of illness and, more ominously, the inevitability of death. Though providing psychotherapy to these clients can at times feel overwhelmingly tragic, it is the solace we are able to offer those beset with illness and death that makes the work so gratifying and meaningful.

As therapists we are privileged to have access to some of the most intimate recesses of the human mind. However, those of us who work with medical patients also have to bear the burden of our clients' concrete suffering. The toll on us is significant: having to tolerate the arbitrariness of illness can either make us cynical and scared, or jolt us into appreciating the finite aspects of life. Working with people beset by medical illness can make us, as therapists and people, able to appreciate life with all its benefits, limitations, joys and disappointments. Working with clients who are medically ill not only requires us to learn more about the seemingly distant and disembodied relational aspects of medicine, but also forces us to confront painful existential realities on a daily basis.

Illness in Psychology and Medicine

When I was not yet 30 years old and had been in private practice only a couple of years, I met Anne*, a pleasant and motivated 70-year-old whom I saw as an outpatient for mild depression. I had known her only briefly, but was very fond of her. Like many elders, Anne had gotten depressed after the death of her husband. Though she had not been in therapy before, she was open to learning how her mood might impact her ability to take care of herself. And like many older clients, she was unsure how talking could help her. But she often noted that after our meetings she felt better, even if she just talked about how she was struggling with getting used to taking care of the finances herself or how much she missed her husband. She also took our appointments very seriously.

One day, Anne uncharacteristically missed an appointment and I had been unable to get in touch with her. The next day, while at a nurse's station in the cardiology unit of the hospital I worked in, I saw her primary care physician, who had referred Anne to me. Upon seeing me, the physician said, “"Oh, Tamara, your patient, the older lady, she died two days ago. She had a heart attack." He then walked away as I stood at the chaotic nurse's station, stunned and tearful.” I had known Anne only a few months, but I had been feeling hopeful about her treatment. Given that she did not have any previous history of heart disease, I couldn't believe that she had died so suddenly.

Anne's death and her physician's manner of disclosure illustrate aspects of medicine that many of us in the field know all too well. The fast-paced, energetic facet of medicine in the U.S. can be characterized as being "hypomanic." Although I am referring loosely to the familiar Diagnostic and Statistical Manual of Mental Disorders1 criteria of hypomania, my understanding of the intensely energetic nature of medicine is more akin to the ideas of Melanie Klein and what she called "manic" defenses. Briefly, Klein described manic defenses as when idealization, feelings of being powerful, and hyperactivity are employed to ward off sadness, worries about aggression, and ambivalence2. In other words, manic defenses are used to avoid difficult feelings. And since difficult feelings abound in medicine, energetic defenses offer a perfect antidote to sadness and loss.

Even minimal experience in the medical profession inevitably leads one to appreciate the consequences of a hypomanic culture. Particularly in hospitals, people talk fast, move fast, and think fast. Many healthcare workers are constantly engaged in goal-directed activity. Even in outpatient settings, patients remark that they spend only five to fifteen minutes with their physicians and commonly complain that doctors are pressed for time. This pressure- and speed-driven culture has a rational component: when a patient is critically ill, physicians and medical staff need to move quickly in order to administer urgent care, which could be life saving. Additionally, many physicians, especially those who work in inpatient settings, are chronically sleep-deprived due to the demands of long hours, call schedules, and other professional and personal responsibilities. In the outpatient setting, physicians are often tightly scheduled to see a large number of patients in a limited amount of time.

As medicine has advanced, the kinds of interpersonal connections within the profession have changed as well. Donald Winnicott described the way he noticed interpersonal differences as a result of modern medical practice:

It is a sad result of the advances in modern medicine that there is no personal clash between patient and doctor as whole persons; there is a visit to the doctor, a disease process found, treatment is given, and the disease is cured, but no one has met anyone, no one person has bumped into another person.3

What I experienced in my conversation with Anne's physician after her death seems to be a common symptom of modern medicine as Winnicott described. Medicine demands a great deal from its practitioners, and a hypomanic style in the personalities of medical professionals can be viewed as a kind of acculturation to seemingly endless demands. On the other hand, the perpetually fast pace in medical facilities also reflects a tendency and desire to not engage with patients in an emotional way.

Bodies Breaking Down: Challenges for Therapists

Although physicians often experience the hypomanic trappings of medicine, as therapists we are also subject to these intense pressures. When I worked in medical settings with a large number of clients both as inpatients and in my outpatient practice, I often found myself wishing I could offer something simple and concrete to ease my clients' suffering. But I also wanted to ease my suffering; at times it felt like helping people who were ill was too much to bear. Sitting with someone with a rare autoimmune disease who had a guarded prognosis and uncertain future, helping someone with lung cancer who was overwhelmed with self-blame regarding years of heavy smoking, or trying to soothe a young adult randomly afflicted with heart disease forced me to face the complex reality of health and illness: we can all try to take care of ourselves and do the right things in terms of our health, but the sad truth is there are many variables we cannot control. Even when clients might have endangered their health knowingly or unknowingly (as in the case of older adults with lung cancer, who grew up seeing physician advertisements for cigarettes), they still have to deal with the fact that illness has happened to them and that their body has let them down and they might not live—or, for some, live with limitations they may never have dreamed possible.

I felt more emotionally vulnerable regarding death and serious illness in my clients when I was younger. Especially then, I had a hard time knowing how to manage the feelings that were stirred up in me. This was probably exacerbated by the difficulties with mourning that are present in medicine, as I had little support in a culture in which people simply move on to the next task, even after someone dies.

One way my intense anxiety manifested at the time was that I frequently feared that I would develop the same diseases of those I was treating. Especially when I worked with people who had been subject to random or mysterious illnesses (often those thought not to have links to lifestyle behaviors), I worried that I too, would be subject to the same bad luck. When I was seeing large numbers of patients in the hospital, it often seemed unbelievable to me that anyone could be in good health, and not sick with some terrible disease! Clinicians I have supervised in hospital settings, in which they were working with severely ill people, have echoed similar sentiments. These feelings and anxieties seem especially prevalent in younger clinicians and those who have not experienced illness or death in their personal lives. However, all of us, in working with people with medical illnesses, need to come to terms with the intense anxieties and overstimulation that are associated with treating this population.

Though our feelings and experiences are filtered through our own psychology, there are many common reactions to working in medical settings and with clients who are severely ill. “Intense fear, anxiety, and thoughts and images of our own death are common reactions and not necessarily related to our own psychological problems; what we encounter is simply difficult to bear.” Serious illness and the possibility of death inherently evoke intense and disorganizing emotions in therapists when we are with our very ill clients. Since many people experience considerable shame in confronting these emotions, reinforced by a cultural mandate to move on, therapists need to create an internal and external space for these intense feelings. This involves a lot of interpersonal work, and often requires a lot of our own psychotherapy.

Those of us who work with medical patients suffer vicarious trauma. We don't talk about it much, as we are not so sure that our colleagues won't pathologize us. In fact, I felt quite misunderstood by a therapist I was seeing when I first started working with severely ill clients in a hospital setting. “When I tried to articulate my terror regarding seeing people my own age who were dying, my therapist interpreted these fears as "unrealistic."” My view was, how could my fears be unrealistic? The young people I was seeing had not engaged in risky lifestyle behaviors; they just were victims of bad luck. How was I to know that this could not happen to me?

Therapists who don't work with medically ill clients often remark that those of us who do have a skewed view of the world or that we don't have good boundaries between our clients and ourselves. Regarding the former idea, our colleagues are right. Therapists who specialize in work with medically ill adults primarily see people who have been subjected arbitrarily to illness. I did have a skewed view of the world, especially when I was younger. As I have gotten older, I realize that many medical illnesses are rare and unfortunate, and I feel privileged to have been able to help my clients at a time in their lives in which they needed someone who could tolerate randomness and unfairness of disease and illness, to acknowledge the potential of death, and most importantly to help them know they are not to blame. Indeed, many people feel that random illness must be caused by something they have done. Feeling that they have caused the illness is a way to believe that they can stop it. Sadly, this is not true. But the idea that we can predict and know of our potential to cause (and cure) our own illnesses is seductive.

A younger colleague, who works with people who have rare lung cancer, said to me recently, "When I cough, I think I have lung cancer." When she said this, I was reminded of the claims launched at me over the years by well-meaning colleagues: that my work was reducing me to a state of lowered boundaries, and that it was crazy to think I might be in the same boat as my clients. And though on one level I can understand these criticisms, on the other it feels so profoundly misplaced and misunderstood. As I said to my younger colleague, "Of course you feel this way. There is no way to work with such an unfairly beleaguered population and not feel scared about what this can mean for you. Bad things just happen."

Psychology, and especially psychoanalytic psychology, can be funny in that “we as therapists are "allowed" (especially in training) to indulge in whatever ideas and fantasies we might have about our own psychological problems, but we immediately pathologize whoever is talking if they have worries about their own bodily health”—they must be too "concrete," they must have some difficult psychological problem that allows them to somatacize. The reality, however, is the opposite of what people often perceive. When we work with medically ill people and are confronted with the random nature of illness and the cruel distribution of severe illness, it is natural that as therapists we would imagine ourselves in the same situation. After all, what else can be described as the true seed of empathy? And in my experience and those of students I know, it is this kind of empathy, "What would it mean if this were happening to me?" that is the most profound and ideal empathy we need to have inside of us to help our clients manage the painful and difficult aspects of illness they are confronted with.

The Difficulty of Engaging Clients

A few years ago I was teaching a class on psychodynamic perspectives of medical illness and mentioned a common phenomenon: many cancer patients who engage in therapy do so when they are in the active stages of their medical treatment (e.g., chemotherapy or radiation); once these stages are completed, many of them leave therapy. The therapists in the class who had worked with people with cancer laughed and seemed relieved to know that this is a common experience and not necessarily based on the therapist's individual psychotherapeutic style or practice.

While it is true that many people with medical illness (not just those who have cancer) present for psychological treatment in the more acute phases of illness and then leave when illness becomes chronic, is in remission, or in the best of circumstances, is cured, it raises the question of why this happens and how it affects the psychological health of people we try to help. One possibility is that those who are acutely ill and undergoing intensive kinds of treatment need acute and intensive psychological support, and once that phase of medical treatment is finished, they may feel that less intensive psychological treatment is needed. Although this rationale may appear to make sense, I have been surprised over the years at the number of people who have left psychotherapy after the acute phases of medical treatment, as some of these clients clearly had issues that would have benefited from longer-term psychotherapy. And even though it is true that some people, particularly those who have had psychotherapy in the past, might be inclined to continue with therapy after the acute phases of treatment, how are we to understand those who do not? And are there things we can do to increase the chance of engaging some of these people in a more meaningful and helpful therapeutic relationship?

People with medical illnesses are hesitant to engage in longer-term treatment with mental health clinicians for a number of reasons. As described, the culture of medicine and modern healthcare reflects a hypomanic culture in which "cures" are provided in a quick and often rushed manner. The practice of psychology within medicine, though valuable, offers a culturally inconsistent approach for people with severe medical illnesses. Even with the approaches often advocated within health psychology and medical care (specifically cognitive-behavioral approaches), the integration of psychology in medicine remains largely difficult.

Integration of psychological approaches and applications in healthcare has improved dramatically over recent years, yet psychological services are largely viewed as an elective treatment within the medical system. To some extent this makes sense. From a practical standpoint, many people undergoing medical care are overwhelmed with medical appointments, as well as the financial expenses involved in receiving care for an illness. Time and money spent on psychotherapy may not seem to be a priority. Physicians may not consider referrals to mental health professionals for those patients who seem to be coping well, even though therapy could be of great benefit.

However, even for people who have financial resources and time for it, therapy is often construed as not only elective, but also a burden. Psychotherapy requires a tremendous amount of resources, both internal and external. “People with severe illnesses are often taxed with the impact of bodily changes and decline, physical pain, and fear of death: surviving from day to day involves tremendous physical energy, and as a result, psychological energy that might be employed to address emotional issues is reduced.”

This relates to the idea that medical patients often present as being more psychologically "concrete." The term concrete has been associated with thinking in patients who are more severely disturbed, such as those who are psychotic or those with personality disorders. However, this way of viewing concrete thinking is very limited—and in itself concrete! A more modern perspective is that, especially under times of stress, we all can regress to a more concrete way of operating, and this is often the case with severe physical illness. In such states, we feel more sensitive to intrusions, more focused on pragmatic aspects of functioning, with less emotional space for reflection.

Trauma researchers have long known that traumatic events make it difficult for people to think in a symbolic way4. The burden is on us, as therapists, then, to help make space for symbolic thought, as opposed to demanding that our clients do so for us.

What Seems Concrete Is

Sara* was a 30-year-old doctorate-level professional when I met her. After a routine doctor visit, her physician had told her that she could not go back to work that day, but needed to be hospitalized immediately for dangerously low blood cell counts. She was diagnosed with leukemia. I met her a few days later in the hospital; she was referred for what her nurses described as almost nonstop crying and excessive controlling behaviors, such as continually asking the nurses to verify the accuracy of her medications, even when they had already told her what they were giving her and confirmed that the dosages were correct.

When I met with Sara, she was guarded and extremely anxious. Although she felt that she wanted help by talking with me, she appeared in genuine shock (as would be expected) but also panicked. When I suggested that she might feel overwhelmingly anxious, and that perhaps she even thought that the feelings she was having would cause her to die immediately, she agreed. She said that at times she felt that she could just "die right there," even though she knew she was getting treated for her disease. The panicked feelings made it difficult for Sara to cope in the hospital. Staff became increasingly concerned because she often asked for higher levels of anxiolytics and pain medications, presumably to manage her anxiety. Sara acknowledged that she just wanted to feel "numb." Although I had suggested an antidepressant, which might provide longer-term and more consistent relief from her symptoms, she refused, objecting that she did not want to feel "controlled" through medication.

As for my role while she was in the hospital, Sara was able to talk to some extent about her anxiety. However, discussions tended to focus on aspects of her life that needed to be managed and taken care of, such as who was paying her bills, what was happening in a recent financial transaction, and how others were managing her projects at work. And although I willingly discussed these topics with her, I felt as if there was little I could do to help ease her tremendous anxiety.

Sara's situation illustrates that when someone is overwhelmingly terrified in response to a serious and life-threatening illness, his or her ability to think about meaning is reduced. Sara's panicked state and her constant checking on the nurses prevented her from slowing down long enough to realize that she was not going to die immediately. They also prevented her from thinking about what she could do to help herself in her situation. She felt that her life was already over, even though she had a long road of treatment ahead of her. Feelings of hopelessness in medically ill clients are common and can be detected by a feeling of helplessness in the therapist, which I felt acutely while I was with her.

Sara attempted to manage her anxiety by becoming more watchful of her environment, including frequently checking that the nurses would not make any mistakes. Not only was Sara terrified and attempting to manage her terror, but I understood that underneath her need to be more in control of her environment was a sense of profound confusion regarding what was happening to her. Attempts at control were a way to reduce the confusion she felt. In her conversations with me, Sara felt the need to go over events in her life that she could not currently control as a way to try to maintain control. She was stuck in this way of thinking and needed me to give ample attention to these external events.

Talking about the more real issue of what she could not control (her body) was not possible, as it made her unbearably anxious and confused. Sara had been caught completely off guard by this diagnosis. As a relatively young woman, she'd had little experience with major illnesses or death. She had no risk factors for malignancies, something she eventually told me she often thought about. Not knowing why or how this had happened to her was a tremendous source of distress. The level of her confusion was so intense that at times she felt as if it would overwhelm her. This is one meaning of panic attacks that sometimes occur in people with medical problems; “anxiety, confusion, and feeling out of control become so powerful that people sometimes feel as if they will die then and there.” It is as if the idea, "Well, I might as well just die now," takes over. The price of such a way of thinking, however, is that Sara and others like her forget that they are still alive, and can maximize coping resources to fight their illness.

Although it is understandable that many people experiencing a life-threatening illness would be terrified, the kind of terror I am describing is the kind where one cannot find refuge in a logical reminder that they are not dying at that moment or that others are helping to keep them alive (meaning, in these cases, medical treatment). This is because the disorienting feelings in reaction to a traumatic illness can become overpowering. Sara could not find solace in the fact that she was being treated for a disease. Sara was so tortured by her anxiety that she feared others, even though these others were desperately trying to help her. She became wary and guarded.

Though I knew that the nurses and doctors caring for her at the time were extremely sympathetic, Sara could not absorb sympathy. Her fears had rendered her helpless, feeling paralyzed and tortured. In this state, no one can really be trusted. Additionally, in this state of mind, the act of thinking as well as having ideas, of any kind, can feel like torture. In other words, the process of thinking as we understand it can feel persecuting, because in a situation in which the body has failed, it is hard to know who to trust. Sometimes in such scenarios, people are even hesitant to access their own thoughts, as thoughts themselves (being present in one's mind) can feel equally as terrifying and persecuting.

This kind of state presents a unique problem to us as therapists, in that the people we may want to help the most are intensely (and often unconsciously) unable to take in what we have to offer. “Their terror becomes our cross to bear. In other words, the intense and barely known emotions become something we have to share and know in order to help. With Sara, I had to tolerate feeling helpless, enraged, outraged, and terrified about what was happening to her.” At the time I knew her in the hospital, she could barely acknowledge these feelings in herself. So I absorbed them and hoped for the best for her, and hoped as well that at some point she could feel her own emotional turmoil.

Sara did well with her medical treatment in the hospital, but was never able to follow up for therapy as an outpatient. And because of that, I can never quite be sure whether my work was helpful to her or not. Such is the case when working with people who are seriously ill. I do not know how Sara fared, or even whether she is still alive. This is another difficult fact of working with severely ill clients, especially in hospital work. As mental health clinicians, we are often not privy to the medical outcomes of those whose lives we become invested in. Clients struggling with illness can't necessarily follow-up in longer-term psychotherapy, for both physical and psychological reasons. As helpers in the world of medicine, we often have to tolerate not knowing whether our clients live or die.

Psychological Ramifications of Cancer Diagnoses

Most of us who are born without chronic illnesses take the functioning of our bodies for granted. When the body stops working in adulthood, this jars one's sense of self. And if the inside of the body does not work, it is very hard to know how and what to trust on the outside. Many cancer patients talk about the eerie feeling that cancer cells have been growing in their bodies without them knowing it. This may be related to both ideas and fears of cancer in our culture. Although heart disease is the number-one cause of death in industrialized countries, many people verbalize not a fear of heart disease, but of cancer.

This is most likely because the imagery associated with cancer, in which bad cells insidiously destroy good cells, resonates with the fear of the internal workings of the body being attacked by itself. This idea has roots in early developmental theories of childhood. Aggression is something we all struggle with as younger beings. Dependency, a sense of not being in control, and anger about that fact that we need to rely on others are facets of young childhood. When things go right in childhood, we can emerge relatively unscathed and able to tolerate our own (and others') limitations and need for dependency.

But when things don't go right, or when parents are preoccupied, we then struggle to tolerate the fact that at times we will need others. The sense that the body is attacking itself is common among clients with medical problems. When this feeling is excessive or pervasive, it can sometimes be a sign that, as children, these clients were often left alone to deal with angry feelings. These feelings can and do often come back to us as adults, especially when dealing with something amiss in the body that we cannot understand. “A sense that the body can attack itself feels like our own toxic anger is turning inward in ourselves, and results in disorientation and mistrust of people in the "outside" world. For some, this results in confusion, collapse, and a feeling that nothing can be trusted either internally or externally.”

Sara tried to remedy these disorganized, helpless, and out-of-control feelings by managing the nurses' behaviors with an attempt to control, in a literal way, what was being put into her body. Such patients need to be able to feel that they can control what we, as mental health clinicians, "put into" them as well.

In these situations, we need to tolerate the fact that due to a patient's suspicions and sense of terror, it may feel at times that we have little to offer. However, just being able to engage with patients like Sara goes a long way. It means a lot to listen and tolerate unbearable feelings when no one else can. People caught up in medical crises often cannot turn to their physicians, as their work requires a kind of detachment. Family members are often so scared themselves that they often tell me they can't bear to hear my clients utter anything other than positive statements. Thus, our clients need us to bear the confusion, terror and disorganization to which they are subjected.

Hope In The Trenches: The Meaning of Our Work

Janet*, a client of mine, died recently after a long battle with cancer. When I saw her for the last time, she told me she was scared of death, but relieved to have an end to her suffering. She grabbed my hand and said, "I can do this now. Thanks for helping me to know that I can let go." Our work together lasted less than a year.

I met Janet in the context of several medical problems while she lived in a skilled nursing facility, but in the process of our working together, she was diagnosed with recurrent cancer. Although she had been told that her cancer had not been cured, and that she would eventually die from the disease, she had convinced herself that her prognosis was otherwise. When she was told that her cancer was not only back, but raging with virulent intensity, I gently suggested that her lifespan was shorter than she had previously thought, and that she might want to say goodbye to those who were important to her. In the context of our relatively close therapeutic relationship, she could hear this, and no longer needed to be in denial about what would be her fate. She was able to say goodbye to those she loved, and was even able to say she was sorry to people she perceived she had hurt.

I could not continue to work with people who were enduring this kind of suffering unless it felt like there was some help I was able to provide, and it appeared that I had helped Janet to relinquish the denial she had so desperately clung to, and had eased her feeling that she was dying alone. These moments remind me of why I got into the practice of working with medical clients to begin with. And more importantly, when I come home every night to my husband, I am so grateful for what we have, now.

*Client names have been changed to protect confidentiality.

Excerpts from this article are taken (with permission) from Psychodynamic Perspectives on Aging and Illness, Springer, 2009. The paperback version of this book was released in June, 2010.

References

Diagnostic and Statistical Manual of Mental Disorders 4th ed.; DSM-IV; American Psychiatric Association, 1994.
Klein M. (1940). Mourning and its relation to manic-depressive states. International Journal of Psychoanalysis, 21,125-153.
Winnicott, D.W. (1966). On cardiac neurosis in children. In R. Shepard, J. Johns, & H.T. Robinson (Eds.), Thinking about children. New York: Addison Wesley
van der Kolk, B.A., Hostetler, A., Herron, N., & Fisler, R.E. (1994). Trauma and the development of borderline personality disorder. Psychiatry Clinics of North America, 17, (4), 715-730.

Cancer and The Secret

Rhonda Byrne’s metaphysical book and DVD, both titled The Secret, have challenged the consciousness of millions worldwide. The film has reportedly helped many people improve their lives by sharing a “secret,” the metaphysical law of attraction. Essentially, this law states that what we think and feel will directly determine what we attract and thus experience, putting us each in control of manifesting the reality we wish to create.

Stay Positive

Two practices described in The Secret include working with a vision board and keeping a gratitude journal. To make a vision board, the individual must become conscious, clear, and specific about what he or she wishes to manifest. Once this is clear, the person creates a collage by drawing, painting, or cutting out magazine pictures that represent these desired realities and then posts them onto a bulletin board. The vision board is kept in a place where the individual will look at it daily. The individual thinks about these realities and actually imagines himself having these things/people/experiences for a few minutes each day. John Assaraf, a successful entrepreneur featured in The Secret, describes his personal experience with vision boards in an interview with Larry King.

A gratitude journal is a daily practice focused on recognizing and consciously experiencing the positive and wonderful things one already has. A common practice is to list five or ten things at the end of each day that you are or were grateful for that day. Theoretically, gratitude, like any positive feeling, attracts more positive feelings, things, thoughts, and experiences. Both of these practices train a person to imagine, thinking about, feel, and focus on the positive things—either those that the person already has or those that they wish to create.

These tools are useful practices. However, I feel that the film overemphasizes the need to be positive.

This shiny-happy-people approach can be problematic for individuals facing loss, depression, and physical illnesses like cancer.

Is there not a night-side to life? The Secret’s segment on cancer, especially, may give an oversimplified message.

In the film The Secret, a breast cancer survivor details how she defeated her cancer without radiation or chemotherapy. She explains that she healed herself with the law of attraction: by thinking positive thoughts, watching funny movies, and telling herself multiple times throughout the day that she was healing. As a cancer survivor, myself, I have to admit that the watching-funny-movies bit put me off; it seemed a bit ridiculous as a cancer treatment. But I got the point: she did whatever she could to keep her spirit up and stress level down. From health psychology and psychoneuroimmunology, we know that stress is counterproductive to healing. But “is it reasonable to believe that we have to be positive at all times in order to heal?”

Do our thoughts actually create physical reality? If I believe that my life is a product of circumstance, largely outside of my control, and that all that I have created now is all that I will ever create in the future, I will likely mope through each day creating more of the same. We’ve all seen this in ourselves, friends and clients. If, however, I subscribe to the law of attraction and believe that I can create anything I wish by feeling good and thinking positive thoughts, I will perhaps engage with life more fully, set clear goals and work to create the things I wish to experience. Such a strategy can be life changing, and not too far off from some positive psychology and cognitive-behavioral interventions. I begin to feel hopeful and empowered. I continue practicing positive thinking, writing in my gratitude journal, visualizing what I wish to achieve. By the law of attraction, I begin attracting more and more of these positive thoughts, feelings, health, objects, people, and circumstances into my life. Wow! Things are really looking up!

Downward Spiral

The problem, however, surfaces when I wake up one day and just can’t get myself into a positive frame of mind. The pressure mounts, especially if I believe the implied corollary to The Secret’s hopeful message: that negative thoughts will send my life promptly into a negative spiral, attracting more and more undesirable things. In an effort to be positive, I may try to deny what I am truly feeling. I begin to feel frustrated, stagnant and confused; soon I am in a tailspin.

The danger of The Secret’s message for cancer patients, in particular, is that they might begin to feel that they are now to blame for their illness and that their thoughts are solely responsible for their healing. “I probably caused my cancer by being so negative. I now have to watch all my thoughts and feelings if I want to heal.” Cancer patients may begin to feel a need to be positive at all times, since negative thoughts and feelings will only create more of the same, presumably exacerbating the disease. This style of thought is reminiscent of the cancer personality research and Temosho’s type C personality, which received criticisms from patients for the same reasons. Cancer patients felt an added sense of guilt and blame on top of fighting for their lives.

Let’s take the hypothetical example of Sally, who is in breast cancer treatment and has begun using the law of attraction, visualizing herself as a beautiful, healthy, powerful young woman. Each day, she envisions herself leaving the cancer center for the last time, never to return. She imagines herself inspiring others to make the same positive changes in their lives and has been feeling great! Her CT scans are improving, she hasn’t been sick from the chemotherapy, and she has been meeting more positive people and experiencing scenarios that she imagined. She practices her visualizations and focused desires each morning, and spends time being grateful for the wonderful things in her life. Sally has really benefited from her new metaphysical practices.

Today, however, she’s feeling very sick; she is tired, angry, worried, and anxious, and she doesn’t know why. Sally begins to worry that her negative state of mind is going to make her sicker and ruin everything she has worked for. Sally begins to think, “If I’m not thinking positive thoughts, my cancer is going to grow. Oh my god, I can’t feel happy right now; I am going to die.” “Soon, she is feeling even worse than she did when she woke up because she feels bad that she is feeling bad!” I call this a “mind f*@%,” and yes, that’s a clinical term. It can spiral down pretty quickly. Sally, without other tools in her toolbox, becomes despondent and confused. She feels powerless, perhaps even more powerless than she felt pre-Secret.

Another metaphysical law not discussed in The Secret is the law of rhythm. This law simply highlights that there are both ups and downs in life. “The tide of the ocean goes out and it comes back in. No one is maniacally happy and positive all the time.” There is a flow to being human, and that includes times of reverie, reflection and even sadness.

Finding the Rhythm

This catch-22 is often the place where people get stuck. A colleague said to me one day,”Have you heard of The Secret? What a load of crap! I have more people coming into my office upset about this thing. You can’t just be positive all the time; you have to work on your issues.” Unlike my colleague, a hardcore psychoanalyst, I do not agree that The Secret is a load of crap; I believe the philosophies are empowering and useful. But as a therapist, I agree that it is indeed necessary to welcome times of sadness or reflection wherein we might work on some “issues.” It’s unreasonable to expect to feel happy, positive and powerful all the time. There is a flow to life: sometimes we are down, other times we are up. There are days when issues are going to grab hold, unpleasant things are going to happen, and we are going to feel bad, sad, mad, and even helpless; we’re human. Rather than try to suppress these difficult thoughts and feelings, it is useful to become aware of what they are about, especially if they seem to come up over and over again.

For the most part, our hypothetical cancer patient Sally is on the right track. She should continue to focus on what she truly desires and work to make that a reality. Life is a beautiful creative process, but also sometimes a process of unraveling. Sometimes, like Sally, we are down, and that just is. “These downtimes are a necessary part of life. We must be willing to be with that aspect of our experience, too—maybe even feel grateful for it.” On second thought, gratitude might be pushing it.

We would all like to avoid stress, pain, and sorrow and live forever carefree in the land of positive thoughts and feelings. The reality, however, is that these “negative” elements are pieces of human existence. Navigating bad feeling states with a bit of acceptance and curiosity will make the journey less painful. Training and experience tell me that emotions shift only when they are fully heard. There is no getting around this piece, and that is no secret.

References

Byrne, R. (2006). The Secret. New York: Atria Books.

Holland, J., & Lewis, S. (2000). The human side of cancer: Living with hope, coping with uncertainty. New York: HarperCollins.

Kiecolt-Glaser, J. K., McGuire, L., Robles, T. F., & Glaser, R. (2002). Psychoneuroimmunology: Psychological influences on immune function and health. Journal of Consulting and Clinical PsychologySpecial Issue: Behavioral medicine and clinical health psychology, 70(3), 537-547.

Kiecolt-Glaser, J. K. (1985). Psychosocial enhancement of immunocompetence in a geriatric population. Health Psychology, 4(1), 25-41.

Kiecolt-Glaser, J. K. (1984). Psychosocial modifiers of immunocompetence in medical students. Psychosomatic medicine, 46(1), 7-14.

Simonton, C. O., Simonton, S., & Creighton, J. L. (1978). Getting well again. New York: Bantam Books.

Temoshok, & Dreher (1992) The type C connection: The behavioral links to cancer and your health. New York: Random.

Family Therapy with Families Facing Catastrophic Illness: Building Internal and External Resources

Ten years ago my late husband Ronald William Pulleyblank, with the help of his doctor and with a small group of witnesses, had his ventilator turned off, after living on it for seven years. Those years and the ones since then have radically affected my life and my work as a psychologist. Ten years after his death, twenty-five family and friends dedicated a redwood tree in Ron's name. In this beautiful event, after so long, we were able to place his illness and death back in what Lawrence Langer calls chronological time.

Langer, in his book, The Holocaust, distinguishes between two kinds of time: chronological time and durational time. He says that we expect a life in chronological time, made up of a past, present and future. When crises become the norm of life, durational time sets in. This is time without past or future and with a recurring experience of a disturbing present that is difficult to organize, express or forget. Langer writes that because durational time cannot overflow the blocked reservoir of its own moment it never enters what we usually experience as the stream of time. Often we and the people around us expect our grief to last for a prescribed length of time. Depending on the level of stress during an illness, this experience can last for much longer than we would expect. This assumption and others often need to be challenged, if patients and families are to find ways to live with significant illness.

 

Challenged Assumptions, Dilemmas, Necessary Conversation

1. Assumption: We each are responsible for ourselves and must make decisions for ourselves.
 
The Dilemma: A particular illness belongs to the patient. How the patient perceives this illness often determines the decisions he or she wishes to make. At the same time the perception of the illness is often quite different for family members who are responsible for the patient's care.
 
An example: Harry, who is very ill, continues to want to drive his children to school. His wife fears that his illness makes it unsafe.
 
Necessary conversations: The couple has to reassess which decisions are independent decisions and which must now be mutual. The roles and the responsibilities in their household also must be reassessed. These conversations need to include the multiple perspectives of all family members and sometimes those of extended family, caregivers and the norms of the community in which they live. The tendency to focus on the needs of the patient over the needs of caregivers and family members often must be challenged.
 
Note: Who participates in these conversations, and in fact in all conversations, often depends upon cultural values and beliefs. Before developing a treatment plan, an assessment with the family of how decisions are to be made is essential.
 

Positive Choices

2. Assumption: There are always positive choices to make, actions to take.
 
Dilemma: Often outcomes about the course of an illness are unknown. Tolerating ambiguity is a prerequisite for making decisions.
 
Example: A patient has fast-growing prostate cancer. He has the choice of following a usual course of treatment with mixed outcomes or an experimental treatment with little or no clear outcome data.
 
Necessary Conversations: Family members work to increase their tolerance of stressful emotional states due to ambiguity. They examine strategies and past experience that may help them tolerate the unknown.
 

Family Resources

3. Assumption: We often hold the belief that each family should and can provide for ill family members.
 
Dilemma: Due to the complexity of treatment and duration of treatment, there is often too much stress on family resources. This can overload the system and make it impossible for one family to provide physical, emotional, spiritual, social and financial resources adequate for all family members.
 
Examples: There is an extremely high divorce rate in families with long-term illnesses and also a high illness rate in other family members.
 
Necessary Conversations: The family explores how to build a community of support. With this support they learn ways to advocating for the needs of all family members in the family and in the wider community vs. over-relying on already overwhelmed family resources.

Maintaining Life

4. Assumption: It is the job of the medical establishment to maintain life.
 
Dilemma: Though this is a central tenet of medical practice, maintaining care is not the direct responsibility of the medical world. Separation between medical decisions in emergency rooms and the implications for life following these decisions can lead to patients being kept alive beyond their capacity to enjoy life and the capacity of their families to sustain them. As part of this dilemma, there is a medical process in place to save lives, but often no ethical process in place that offers the patient and family members a voice in deciding when enough is or is not enough. In addition to life-threatening issues, realistic care plans that take into account family resources need to be part of the medical treatment plan.
 
Necessary Conversations: Family discussions before there is an emergency about how decisions ought to be made can be very helpful. Though health-care directives are useful in this regard, they need to be re-assessed as the situation changes. Convening multiple systems that impact family life so that there is a shared understanding of what is possible and what are the wishes of the family will sometimes address issues of fragmentation that lead to unwanted decisions. Integration of services also adds to the possibilities that families have of accessing needed resources.
 

Treatment Principles

Underlying these conversations are the principles of therapy, or the backdrop of any engagement in the treatment process described below:
 
Shared human experience: No one avoids illness and death. It is an experience that bridges, by its very nature, the therapist/client relationship; therefore our capacity to be seen is crucial in entering the often lonely experience of illness and death.
 
Spiritual Practice: Thinking of the therapy room or someone's home as a sacred space. Evoking the strength of prayer, meditation, not being afraid to ask for help in facing the unknown. Starting with silence, leaving time for meditation ending with silence. Sharing one's own spiritual practice and prayer.
 
A Narrative Overlay: Arthur Frank, in his article about illness and deep listening, describes three different kinds of stories related to serious illness. They are: Restitution Stories in which there is a positive resolution (this kind is a favorite of us therapists), Chaos Stories in which things remain ambiguous (our least favorite kind), and Quest Stories in which the exploration of the unknown is a goal of the therapy.
 
Social Activism: Patients are often marginalized. They are a group fighting not to be silenced, and part of the therapy is advocating with them for their rights.
 

Examples of Treatment Issues at Different Stages of Illness

At diagnosis: Keeping things the same—a wish not to tell. A man 77 years old is diagnosed with fast-growing prostate cancer. He is experiencing a profound sense of disbelief because, though he has been having difficulty with urination, he has been told over the last three years that this is normal. He's also been told that if he does have prostate cancer it is most likely to be slow moving and he will die of something else. No tests are done until very recently, when it is discovered that the cancer is fast-moving and advanced. While he is dealing with this disbelief, he has at the same time to decide about whether or not to choose the conventional treatment or an experimental treatment, and where to get treatment. His children are scattered. His wife is highly anxious and wants a decision to be made immediately. He wants to go slowly, still focused on his disbelief that the doctors he had had faith in seemed to have made a mistake in his case. His focus is on keeping things the same. His wife's focus is on fixing things. Slowly his adult children, who up until this time have never participated in their parents' decision-making process, join their parents in making a decision—the best decision that they can make, but still a decision with uncertainty. In this family, this has a surprising enlivening effect as if everyone knows that they don't know what will happen, and so they reach out to each other and build on the strengths of their relationships.
 
Note: There are many reasons for patients and families to wish not to speak of illness. It often creates a sense of isolation as one is seen as different. It can be seen as weakening. Around particular illnesses there are many fears and judgments. Communicating about illness can have negative effects on employment and parenting responsibilities. Understanding the reasons that people avoid talking about the illness can help the therapist work with the unique timing and pace issues within each family.
 

Ongoing Crises: Living with Ambiguity

In another family that I am working with, the father, age 50, has fast-advancing ALS. He cannot communicate except with a raise of his eyebrow. Though he has decided not to go on a ventilator, there are many caregivers, involved and the ALS Center continues to try to find ways to relieve his symptoms. His mood vacillates between passive acceptance and depression. He is on antidepressants. His wife is overwhelmed. She is angry that everyone keeps expecting her to do more. She cannot sleep at night. One daughter has begun her first year at college; another daughter is away at a boarding school. We meet together as a family. Each family member has extraordinary pressing needs that seem to conflict with each other. We have a series of conversations in which the grief that is the strongest shared experience is brought into their conversation with each other. With this shared experience, sorting out who needs what, who else might help, becomes clearer, though this is a good example of an ongoing chaos story that has no good ending in sight. Sometimes even taking the time for therapy feels like a burden since there are so many people providing different services.
 

Death and Dying: Letting Go

Sometimes people can make a conscious choice to die, as Ron did in turning off his ventilator. It took many months for him to make this decision. We had conversations with family members, ethicists, psychotherapists and spiritual teachers. Once he decided to turn off the ventilator off, he went through the process of saying goodbye to the important people in his life, even though he could barely speak. More often death is not planned, but sudden, and often a crisis. Inviting families to include conversations about death and dying can be helpful, but often patients resist this fiercely as they hold onto life. Sometimes these conversations work better not all together but separately, with different family members at first and then leading to a wider discussion. When families with adult children come back together as a family often old hurts reappear. These need to be addressed and everyone needs some time to catch up with each other in order to move forward together. Families with younger children have to match conversations about death and dying with the age of each child.
 

After Death: Going Forward

As I said at the beginning, many issues of distress last much longer than people expect. Careful assessment is often needed. Different family members have different responses. When working with children in particular, it is sometimes difficult to sort out what is PTSD and what is grief. If supported in these differences, family members and the family as a whole often mobilizes new resources to transform itself.
 

Summary of Suggested Therapeutic Practices

Diagnosis 
Dilemma: Maintaining the familiar with radical change
  1. Providing a safe container for the expression of intense shock and disbelief.
  2. Facilitating conversations about the diagnosis with children and extended family members.
  3. Bearing with the family the ambiguity of not-knowing the outcome.
  4. Searching for ways to maintain the normal everyday of life, especially for children.
  5. Shifting anxiety about not knowing to finding out information from others.
  6. Discussing ways that other family members and/or friends can participate in the crisis.
  7. Helping families make and/or face medical decisions and prepare questions for meetings with doctors.
  8. Advocating for families in their dialogues with medical and insurance systems.
Ongoing Crises 
Dilemma: Sustaining hope with continuing loss
  1. Normalizing a distorted sense of time and feelings of anxiety and depression as predictable responses to ongoing crises.
  2. Including your experiences with catastrophic illness and death.
  3. Paying attention for and treating overwhelming depression or anxiety in the patient and family members.
  4. Facilitating conversations about the meanings of illness and death in the family and in the wider social context.
  5. Searching out underlying values, beliefs and family history that have led to these meanings.
  6. Looking for stories and practices in the family and in the wider culture that offer other possible meanings and responses to illness and death.
  7. Bearing and talking about the ongoing pain with the patient and the family as they witness the illness worsen.
  8. Finding creative ways for the family to spend good times together within their limited circumstances.
  9. Allowing for the different experiences and needs of the patient and family members.
  10. Facilitating dialogues and planning that take into account these differences.
  11. Convening a wider circle of friends and family to facilitate ongoing support networks.
  12. Bringing nursing, medical, spiritual and social service providers together with the family to assess ongoing needs and to provide coordinated services.
Conscious death and dying 
Dilemma: Knowing the unknowable
  1. Providing openings for conversations about death and dying.
  2. Tolerating and experiencing intense grief with family members.
  3. Exploring beliefs, meanings and family stories about death and dying.
  4. Participating with families in discussions about the economic, ethical, social and spiritual implications of life support systems.
  5. Offering opportunities for friends, family members and spiritual teachers to participate in these conversations.
  6. Discussing desired rituals and practices in preparation for dying and death.

Bibliography

Boss, P. (1999). Ambiguous Loss. Cambridge, Massachusetts: Harvard University
Frank, A. (1998). "Just Listening: Narrative and Deep Illness", Families, Systems & Health. Vol. 18, No. 3.
Hanh, T.N. (1975). The Miracle of Mindfulness. New York: Beacon.
Johnson, F. (1996). Geography of the Heart. New York: Scribner.
Kuhl, D. (2002). What Dying People Want. New York: Public Affairs/Perseus Books.
Langer, L. (1975) The Holocaust. New Haven: Yale University
Levine, S. (1987). Healing into Life and Death. New York: Anchor.
Lewis, C.S (1976). A Grief Observed. New York: Bantam.
Polin, I. (1994). Taking Charge: How to Master Common Fears of Long-Term Illness. New York: Times Books
McDaniel, S. & Campbell, T. (1997). "Training Health Professionals to Collaborate", Families, Systems and Health. Vol 15, No. 4.
Pulleyblank, E. "Hard Lessons." The Family Therapy Networker. January.
Pulleyblank, E. (2000). "Sending Out the Call: Community as a Source of Healing, Families Systems and Health. Vol.17, No.4.
Pulleyblank Coffey (2003). "The Symptom is Stillness: Living with and Dying from ALS, A Progressive Neurological Disease." Chapter in: End of Life Care, Berzoff, J. & Silverman, P (eds.) New York: Columbia University Press (in press). **
Quill, T. (2002). Caring for Patients at the End of Life. New York: Oxford Press.
Rolland, J. (1994). Families, Illness and Disability: An Integrative Treatment Model. New York: Basic Books.
Spiegel, D. (1993). Living Beyond Limits. New York: Fawcett Columbine.
Staton, J., Shuy, R., Byock, I. (2002). A Few Months to Live. Washington D.C.: Georgetown University Press.
 
**Copy of chapter available from author. Contact at: epulleybl@aol.com.