Just as Elizabeth Kubler-Ross developed a stage-of-grief model, several sociologists have created a model for the emotional stages of loving someone with mental illness.
Dr. Joyce Burland, a psychologist, spent two decades of helping her mother and her daughter deal with schizophrenia. She found no model for the experience, so she created the family education curriculum Family to Family for NAMI. (My husband and I have taken this course and recommend it to many families in our support group.)
The Burland model has three stages:
- Heads Out of the Sand – The family knows their loved one has a mental illness. They may still be in denial about how severe the illness is. The family needs education (especially about the prognosis for the illness), crisis intervention and emotional support.
- Learning To Cope – The family accepts the illness while still experiencing emotions like grief, anger and guilt. They need education about self-care and coping skills for their loved one, as well as peer support.
- Moving Into Advocacy – Some families eventually become advocates to help others struggling with these issues.
Dr. David Karp, a sociologist at Boston College, proposed a second model with four stages:
- Emotional Anomie – This stage comes before a firm diagnosis. It can include fear, confusion, bewilderment and questioning of one’s possible “guilt” in the situation. (“What did I do wrong to cause this?”) It also contain the fervent hope that the problem will “just go away.”
- Hope and Compassion – This occurs when the diagnosis is provided. Fear and confusion directed at the loved one turn to compassion. The family starts to learn about the illness and to understand they need to be caregivers. While still hoping that the illness will be resolved quickly, some caregivers may feel that they are willing to do anything to make things better for their loved one.
- Loss of Dreams and Resentment – Now the family understands that the illness may be a permanent condition. Some experience anger and resentment because it is a problem that they cannot fix. The resentments also arise from realizing that the illness will have a long-term impact on their own plans. Some, such as adult children dealing with an ill parent, find themselves in a role reversal situation. Many rethink their expectations for the ill loved one, struggling to understand what is realistic. The struggle to decide what behaviors the loved one can control and what they can’t becomes a daily reality. Families begin the process of trying to love the person and hate the illness. As the demands of caregiving continue, some families become isolated from friends and other family members.
- Acceptance – The family realizes that it can’t control the loved one’s illness. They feel somewhat relieved that they are not responsible for fixing the issue. Karp was the person who created the “4 Cs”: “I did not cause it. I cannot control it. I cannot cure it. All I can do it cope with it.” At the same time, the family more easily sees their loved one’s strength and courage in the struggle. This may led to more respect and even admiration for that person.
Where you do think you fall in these scales? Have you experiences the differences between having a loved one with a “physical” illness, such as cancer or heart disease, and having a loved one with a brain-based disease?