By Michael Slevin, LCSW-C
Severe mental illness may have upended your family. The diagnosis of bipolar disorder or schizophrenia came out of nowhere, it seemed, and suddenly your family is in crisis. The terrain is unfamiliar; the signposts in a foreign language. What are the challenges and the risks; what are the opportunities? What is the future for the one you love and for your family? How do you navigate?
Severe mental illness most often appears in late adolescence and early adulthood, although it can occur later in life. In retrospect, you may have noticed changes in your loved one over time, such as withdrawal, agitation, or suspiciousness. But at the time these seemed no more than the changes any developing young person undergoes. Then, when behavior changes became more dramatic, and the course of the illness was clear enough to allow for a definitive diagnosis, you were in shock. Perhaps there was denial, sometimes feelings of shame or embarrassment, and then, as the reality became unavoidable, grief. Not only have the life prospects of the person with mental illness changed, but, as a parent, grandparent, sibling or spouse, your own hopes and anticipations for your loved one may need to be adjusted.
One of the most important things you can do at this stage is to educate yourself about your family member’s illness. May is Mental Health Awareness Month so this is a perfect time to start. Some helpful books accessible to the lay person are listed below. You may be feeling overwhelmed and alone in dealing with your relative’s illness, but you don’t have to handle this all by yourself. The National Alliance for the Mentally Ill (NAMI) offers information and support groups for parents and other family members where they can share experiences with others going through similar crises. When a person is admitted to an inpatient psychiatric unit, and gives consent, the social worker or psychiatrist can help the family understand what the patient is experiencing, as well as his or her needs and future possibilities. You can also get support and understanding from Jewish Community Services’ mental health professionals.
You may be on a seesaw of hope and discouragement. Your loved one is often dealing with tumultuous feelings as well: grief, frustration, anger, denial. For example, people with schizophrenia may not be able to recognize that they are mentally ill. They may not understand that they need to take medication for the rest of their life. It is not that they are hard-headed or stubborn; they genuinely don’t understand. Similarly, reassurance and cheering up go only so far with people who struggle with severe mental illness. They may be manipulative and appear self-centered or demanding.
Perhaps you are being challenged by an adult child who has withdrawn from his friends, spends hours on the computer, flies into rages, or has manic episodes of no sleep and impulsive actions. He may have psychotic episodes – hearing voices, being suspicious or paranoid, having delusions about the past or present. Managing yourself and your child at these times will take all your skill and resources. Is she safe from self-harm, or harm to others? If not, you may have to call the police, coax your child to go to an emergency room, or, if you can’t manage alone, even go to the courthouse to get an emergency petition so the police can take her to safety.
While facing these challenges, especially if they persist, you need to have a talk with yourself. “For my sake, the sake of my marriage or other children, I must not get exhausted; I must not get burned out. If needed, I’ll get therapy for myself. My loved one will need me for many years to come. I must look to the future, even if he or she cannot. He may be eligible for Social Security disability insurance, Medicare or Medicaid, food stamps. Someone may need to follow up on this paperwork. If she is unable to handle her money, I may be called upon to act as a representative payee. Should I get a Power of Attorney? What lawyer can I consult about the pros and cons of guardianship? What arrangements need to be made for after I die?”
A severe and persistent mental illness is life altering. You may need to learn new skills: how to navigate the world of psychiatrists, therapists and case managers, medications, hospitals and day programs. But in the midst of all these changes and challenges, don’t forget: the person you cherished is still there. She may be able to manage living independently, volunteer part-time, work successfully, marry, and have children. Or he may need to live in a supervised group home and attend a psychiatric day program – or someplace in-between. Each person has a unique life experience with challenges and accomplishments. Each has spent growing up years developing skills and personalities unaffected by mental illness. And, while there is an important genetic component to bipolar disorder and schizophrenia, that component interacts differently with each person’s experience and environment. There are many mysteries as yet unsolved, but we do know that if a mental illness is diagnosed and effectively treated early, the chances of a relapse lessen and the seriousness of the illness can often be limited.
The course of these illnesses is not straight or without trouble. Because the vulnerability is genetic, you can do only so much. Recognize that your feelings toward your child or sibling or spouse are complex, as they are in any intimate human relationship. So help where you can, love when you can, be good to yourself – and don’t get burnt out.
By Michael Slevin, LCSW-C, JCS Therapy Services
To learn more about how JCS can help you solve life’s puzzles please visit our home page or call 410-466-9200.
Jewish Community Services, 410-466-9200, www.jcsbaltimore.org/emotional-well-being
National Alliance for the Mentally Ill
Baltimore City and County: www.namibaltimore.org, 410-435-2600
Howard County: www.nami.org/sites/namihowardcounty, 410-772-9300
Laura Epstein Rosen, Ph.D., and Xavier Francisco Amador, Ph.D., When Someone You Love Is Depressed: How to Help Your Loved One without Losing Yourself, New York: Simon & Schuster, 1996.
Xavier Amador, I Am Not Sick, I Don’t Need Help! How to Help Someone with Mental Illness Accept Treatment, New York: Vida Press, 2000.
Mark Komrad, M.D., “You Need Help!: A step-by-step plan to convince a loved one to get counseling,” Center City, MN: Hazelden Press, 2012.