Integration and recovery through a community of care, for people with severe mental illness
or chronic brain disorders (Schizophrenia, Bipolar, Depression disorders) and their families
By Ofer Zur, Ph.D. Licensed Psychologist and Consultant Sebastopol, CA
Table Of Contents
Phases Often Experienced By Families
Forming The Village Or A Community Of Care
My first experience of a true village was in East Africa in 1970 where, as a young scientist, I was attempting the interesting and ultimately impossible task of getting the villagers to eat fish from a nearby lake and thus to enrich their protein poor diet. In my ignorance, I later discovered that fish were considered taboo. But my mission to promote fish soon took second place to my interest in the psychological, sociological and spiritual dynamics of the village.
I was swept up by the strong current that flowed through and around this collection of families, joining them in a circle of interdependence, acceptance and mutual support. This current embraced the strong and the weak, the good and the not so good, the healthy and the frail and the so-called normal and the different. And what a plethora of roles were to be found in this small village: the Grouch, grumbling and complaining and annoying everyone; the Clown who joked and mocked and brought laughter to every face, finding the ridiculous in any circumstance, teasing me mercilessly about my odd accent; the Witchdoctor who allowed me to observe him for days on end as he administered to the villagers and conducted the rituals; the Man-who-Talked-to-Trees; the Medium who communicated and interceded with the villagers’ ancestors; and the young warriors, self-consciously leaning on their new spears, spending hours beautifying their hair and skin with red mud. Each was a treasured and colorful piece of the mosaic that made up this vital community. And, to be sure, there were those who also occupied common basic roles, equivalent to our butcher, baker and candlestick maker.
There were villagers who needed to be carried everywhere. There were villagers who needed to be constantly protected from harming themselves. Yet, the traditional village not only tolerated such diversity but, in fact, truly embraced and often celebrated the differences, offering a wide network of support for all. The village respected the roles and function of the village shaman, the fool, the warrior, or whoever, and provided them with food and shelter. Whether strong and healthy or frail or handicapped, all were supported physically, emotionally, and spiritually. When necessary, special healing rituals focused on the mentally or physically frail.
Sometimes, even after months of living with a family, I still could not figure out who was who in the village due to the interdependence and lack of modern day boundaries. The sons, daughters, aunts, uncles, sisters, mothers – all interacted seamlessly in the way they all cared for one another. It seems to me that I had great good fortune to be briefly a part of the most profound expression of the extended human family – a village.
These family units were not separated by picket fences nor were they self-sufficient or self-maintained. Our western culture is the first culture in human evolution to expect the nuclear family unit to be self-sufficient in all matters, including the physical, emotional, financial, and spiritual. Community support is rarely expected or sought. Thus, families with a member with a severe brain disorder have been primarily left to fend for themselves and to deal with the complexities of their loved ones’ mental illness on their own.
This article focuses on the great need to resurrect, to reactivate the essence of the authentic village, with its community of care and support networks, in a form appropriate to our own North American communities, particularly as this would impact people with brain disorders, and their families, both nuclear and extended. My references to the “village” will henceforth deal with my vision of such a traditional village in the context of our culture.
When I look around my community in Northern California, I see a limited range of those roles I encountered in Africa. I do not find anyone talking to trees, no regular grouches, and, sadly enough, few jokesters. Here in the West, almost all people fall into mainstream provider-consumer roles, such as storeowners, parents, farmers, or teachers. But the homeless and those with brain disorders have been facing restrictions, harassment, and arrests for not fitting in with the rigid norms demanded by society. Those with mental illness, the elderly, homeless, disabled, sick, and all others who are different and are not in mainstream roles, have generally been secreted away. They have been relegated, at best, to halfway houses, senior housing, geriatric, and other hospitals, nursing homes, and, at worst, to grim wards and locked psychiatric hospitals. Many of the mentally ill have been criminalized and are serving time in jails and prisons. In short, we live in a world that is crying out for the rebirth of villages.
How do we create a village where none has existed? When should a village be created? Before I attend to these questions, I would like to outline the phases that most families pass through as they struggle with mental illness or brain disorders.
Phases Often Experienced By Families
While each culture, family and individual situation is unique, many families of those with severe mental illness go through the following similar phases in their struggle with the illness:
Phase 1. Confusion:
Most families initially become confused and baffled when faced with different or bizarre behavior, odd thinking, or the unpredictable emotional reactions of their ill member.
Phase 2. Frustration:
Families often believe that the ill members have control over their behavior and, that with effort and will power, they can change. They beg, pray, demand, chastise, or punish the person to get them to act, “normal” again. Their attempts to get the sufferer some psychiatric care often fall on deaf ears.
Phase 3. Shame:
As the supportive, punitive, or controlling efforts fail, the family realizes that something is seriously different or amiss with the member. Living in a culture that mistakenly sees the home environment as the cause of their offspring’s suffering, they feel guilty, defensive, and ashamed.
Phase 4. Secrecy:
As the supportive or punitive efforts fail and shame and guilt become more prevalent, the family fears they will be blamed for the situation and tries to hide the problem altogether. At this point, many families actually collude or foster the illness instead of enabling and urging the sufferer to seek help and healing.
Phase 5. Denial:
When the family comes to realize that the situation is not improving and is not likely to improve soon, they tend to deny that there is a problem at all. The family denies not only the hardship of the sufferer but also the stress and dysfunction of the entire family. As a result, in many cases, no one seeks help or guidance for the escalating or severe situation.
Phase 6. Despair & Dysfunction:
Realizing that the situation is getting worse, families feel mired, angry, hopeless, and emotionally, and often financially, depleted. They either live with stress, chaos, fear, and tension or despairingly ask the member to leave. Neither solution helps the stress and hopelessness. Families continuously grieve and despair over the shattered hopes they had for the person and the families.
Phase 7. Crisis:
With denial and dysfunction mounting, sooner or later a crisis occurs. This can be a result of an arrest, drunken driving charge, petty theft, public intoxication, drug use, or bizarre behavior. The sufferer ends up either in jail, Psychiatric Emergency or an inpatient psychiatric hospital.
Phase 8. Responding to the Crisis:
There are a number of ways that families respond to such crises: some families continue the denial and sustain the dysfunction by bailing the sufferer out of jail or helping to secure his release from the hospital so they can resume their former ways, at least until the next crisis.
The crisis can also provide an opportunity for growth and healing. When the crisis arrives and the sufferer ends up either in jail or in the local mental hospital, it is very important NOT to impulsively or automatically bail them out and take them home. Before bailing them out or taking the person back home, a clear, agreed upon, well thought out plan must be in place so the situation does not revert to the old dysfunctional, wasteful, or dangerous one. Depending on the sufferer’s level of functionality, s/he may be bailed out or allowed to go back to living at home, with some pre-articulated conditions. Such conditions may be articulated in the first village meeting, which may be convened without the sufferer, and which may include terms, such as mental health treatment, attending AA, taking medication, being employed, going to school, or any other condition which has been clarified and written out ahead of time.
Phase 9. Recovery and Integration:
The individual, whose goal is recovery, has made the decision to meet the challenges of disability realizing that acceptance of limitations and an understanding of the illness is primary. Recovery does not mean a cure, a lack of symptoms, self-sufficiency, or restoration to a pre-existing state of function or to full functioning without the need for support. Recovery means developing adaptive and appropriate support and coping mechanisms to deal in the best way possible with the brain disorders so the person will live as fully as s/he can. While a cure is not the goal of recovery, living a satisfying, connected, and meaningful life is. Medication together with emotional, medical, physical, vocational, and spiritual communal support are the key ingredients for such recovery.
From the village point of view, it does not segregate its citizens, but provides a wide variety of supportive professionals and community services for those in need of medical and psychological treatment. The village or communal integration or healing process for the person with mental illness and his or her family and into a wide support system in the community is more often than not a life long process. The integration happens on many levels: It occurs within the person with the help of medication and psychotherapy; within the family with the help of family therapy; and, within the community with the help of the village.
The quest for effective medications for severe mental illnesses has appropriately been at the forefront of research. NAMI’s heroic educational efforts to disseminate information about the nature, scope and ways of treating mental illness have been central to this focus and its legislative efforts have been equally important. While some analytic tradition still obsessively fixates on the role of the mother in mental illness, the battle to shift the focus from mothers to brain chemistry has, nevertheless, gained significant ground. The treatment of people with mental illness should not rest only with the families, psychiatrists, government funding, or community mental health centers. It is a problem that lies deep in our societal values and structure. It lies within our culture – a culture that denies the richness of human diversity and rejects anyone who veers from the acceptable, mainstream consumer economy roles.
Forming The Village Or A Community Of Care
In my work, I often see my primary roles as being the village initiator, planner and coordinator. One of the first things that I do is to assess the needs of the individuals, their families and, when appropriate, their extended families. With their help, I define the extent of the village, or the community of care, to be formed around the sufferer and his/her family, as well as other involved individuals. Besides the identified ill person and his/her immediate family, such a community of care may include other involved family members, social worker, board & care staff, employer, psychiatrist, roommates, social, recovery, and spiritual support group, landlord, friends, neighbors, and any other relevant “villagers”. Anyone that can help to further the integration and healing of the person with the brain disorder and his or her family is welcome to be part of the village. A very few European communities, such as Geel, Belgium, which was recently featured on “60 Minutes” (CBS) have formed “true villages” and created comprehensive programs where people with disabilities and brain disorders live with farming families, fulfilling a valuable role there. In this setting, they are in no way segregated but are fully integrated into the community.
The Village Meeting
When those people willing to serve on the village council gather, they identify the needs of the different villagers (not only the identified sufferer) and the subsystems (i.e. parents, roommates, work place); they talk about their mutual commitment to and expectations of each other; and, acknowledge that they are all sufferers in unique ways. The right time for the activation of the village varies from individual to individual, family to family and village to village. At times, the functioning of the village may be manifest initially as a substance abuse type intervention where people speak about their love for the sufferer but also about what pains them and what they are not ready to be a part of. Mostly, the purpose of the village is to attend to and support the needs of those with brain disorders and their families.
Many village meetings can be visited by NAMI members who share their experience and knowledge in support of the families. NAMI members are glad to share their vast knowledge of supportive physical, emotional, vocational, legal, financial, and spiritual resources in the community. They also address the burn out risk that many families face.
In the village meetings, we divide responsibilities, articulate promises, and make contingency plans. Above all, we establish a communication network where the roommate, for instance, can talk directly to the psychiatrist about their concerns; where the employer is regularly notified of upcoming changes in meds that may affect the person’s behavior; and, where the parents and siblings are in an ongoing dialogue with the treating counselor.
In one particular village meeting, we came up with a plan whereby every day, seven days a week, at 5:00 PM, one of us villagers met with the person who suffered from bipolar disorder and drug and sexual addiction to encourage him not to drive to the neighboring town to do drugs and engage in risky sexual behaviors. In another village meeting, the person who suffered from, and was highly knowledgeable about, bipolar disorder explained at length the tumultuous history of his relationships to Lithium and Depacote. He asked for our help to monitor his state so he would take the meds, preventatively, only at the onset of a manic episode. Fortunately, the psychiatrist involved was sympathetic and supportive of the plan. At this meeting, we charted a complex list of symptoms and behaviors that were likely to signal an onset of a manic episode; outlined clear paths of communication among those who might first observe and report such signals to the village coordinator and the medicating psychiatrist; and, fleshed out a clear contingency plan in the event the person had already launched into the manic episode and was not fully cooperating with the plan. Most village meetings are less dramatic and are primarily focused on good flow of communication and information among the villagers.
The frequency of the village meetings, like their content, depth, and breadth, varies from family to family. Meetings will often be more frequent at the beginning of the village’s formation and, later on, convened as needed.
Bringing It All Together
In the mold of the traditional villages of old, forming a village around the brained disordered is designed to break through the tendency of western culture to isolate and often hide the different and disabled away. The community of care is designed to provide the ill person with communal, physical, emotional, and spiritual support while guiding him/her toward recovery so that s/he may again live a satisfying, connected and meaningful life. The specific village can be formed early on when illness first afflicts a family member, or during any of the phases outlined above. It is then the function of the village, using its tool, the village meeting, to nourish, protect, and care for all the villagers, to embrace diversity, to extend its love in times of joy and times of adversity. Each villager has a role – hopefully, a positive role – in the life of the village and in the life of every other villager. The village is where life, in all its endless and often chaotic diversity, takes place and is accepted and embraced according to the needs and functions of all the villagers. Like any human creation, the village is never perfect, but where there is care, concern, and acceptance, there is also the opportunity for, learning, healing and growth.
Special thanks for their suggestions, ideas and feedback to Dee Ballantyne, past president of NAMI Sonoma County, California and past coordinator of Family-to-Family education program and to Nola Nordmarken, MFT, a Los Angeles area counselor, psychotherapist and expert on villages.