Chapter Excerpt from: A Sourcebook for Families Coping with Mental Illness: A Guide for Preventing the Other Shoe from Dropping
Produced by: National Alliance on Mental Illness (NAMI)
Edited by: Michael R. Berren, Phd.
Parents have hopes and dreams for their children. While the specifics might vary from family to family, depending on culture and individual background, they all have something in common. Parents want their children to grow up and lead happy, fulfilled lives. Parents hope that their children will have rewarding careers, raise families of their own and make a positive contribution to their community. Siblings want to have that special person with whom they can share memories and see the future in the eyes of nieces and nephews. Given this vision, the news that one's son or daughter, or brother or sister, has a serious mental illness is one of the last things that a family member would ever want to hear.
The diagnosis of a serious mental illness occurs daily, in countless hospitals, clinics and private practitioner offices across the country. For some families, the diagnosis of a mental illness is experienced as nothing less than a death sentence. It is the death of the dreams and aspirations that they have for their son or daughter. When family members first learn that their loved one has a mental illness, a flood of questions, fears and doubts will likely arise: Will she ever get better? How badly will schizophrenia affect him? What can we do to help? These are just a few of the countless, but normal, questions that families deal with when confronting a serious mental illness. For some families, "What do we tell the neighbors?" is another question they will ask themselves.
Serious mental illness affects each person and family differently. As with other chronic illnesses such as rheumatoid arthritis, diabetes or multiple sclerosis, the severity of symptoms and impairment can vary from person to person. And for each person the impact of the illness can vary from day to day and year to year. Some individuals will experience significant impairments and will struggle daily to cope with debilitating symptoms. Others will be lucky enough to be less seriously affected or will learn ways to adjust to their illness and live fulfilled, productive lives.
In later chapters of this book we will review very specific information that should be helpful to family members in assisting their loved one to live as fulfilling a life as possible. In this chapter we would like to address two areas that are important upon learning that a loved one has a serious mental illness: what to expect, and things to do.
WHAT TO EXPECT
The most common questions that families ask about any illness (not just mental illness) include: Now what? What can we expect? When will she recover? When will he go back to work? Will she lead a normal life?
We wish that for mental illness there were simple answers for those questions. Unfortunately, there are no easy answers. The course of the illness and treatment will be different for each individual with a mental illness. The answer to "What can we expect?" will be different for every family. Support systems, economics, the system of care in the local community and family cohesiveness will all play a role in determining the impact of the illness on the family member with it and on the rest of the family. One thing that you should accept from the beginning is that in many arenas you can have an impact on your family member's quality of life. There are, however, other aspects of the illness and systems of care that are likely out of your control. Hopefully, this book can play some role in helping you have a positive impact on those things that are within your control.
Before we get started we want to tell you about an individual whose story makes it clear that mental illness is not a “death sentence.”
Patricia Deegan was diagnosed with schizophrenia when she was a young adult. The psychiatrist who gave her the diagnosis told her about her serious illness and informed her of the consequences of the illness. He told her that she was going to need to accept the fact that she would never really have a career or a productive life. He told her that she would likely have many admissions to psychiatric hospitals and was essentially doomed.
Not all individuals will be as successful as Dr. Deegan in recovering from mental illness. Some individuals will struggle with the persistent, painful effects of their illness and grow discouraged or angry at their situation. One of your roles, as a loving family member, is to help your family member achieve the greatest level of functioning and highest quality of life possible.
THINGS TO DO
We believe there are eight action steps you can take to help ensure the best possible outcome for the family member who has a mental illness, for you and for other members of your family. They are:
• Learn all you can about mental illness and the specific diagnosis of your family member.
• Take care of yourself.
• Learn about approaches to treatment and recovery.
• about local systems of care.
• Be involved in the care of your family member.
• Learn about financial and legal issues.
- Consider joining support and advocacy groups.
• Give yourself permission to grieve your loss.
Despite having the diagnosis of schizophrenia, Patricia went on to get a Ph.D. in clinical psychology. She now lectures across the country on the topic of how to live with and recover from mental illness. Her talks are both informational and inspirational. She tells her audiences about the time she was making one of her presentations about hope and recovery. At the conclusion of that particular presentation, as with most presentations, people came up to her to ask her questions or tell her something that they wanted to share. On that occasion a gentleman told her that he wanted to apologize. He wanted to apologize for the manner in which he had treated her years earlier. He was the psychiatrist who had given her the diagnosis of schizophrenia and told her there was essentially no hope of her leading a normal life.
Learn About Mental Illness and the Specific Diagnosis
The knowledge base concerning mental illness is growing exponentially. Behavioral scientists are coming closer and closer to understanding the mechanisms of mental illness. In learning about mental illness, you don't need to become a "mini psychiatrist." You should become as familiar as possible with the whys and ways of the illness, the impact of medication, and approaches to rehabilitation. You obviously will want to become knowledgeable about the services and treatments that are available locally for your loved one. Finally, many families find it important to learn about systems of care, and how to become an advocate for better care for individuals with mental illnesses.
Take Care of Yourself
I was on an airplane traveling between Dallas and Tucson when I had a revelation of sorts. The concept for this family handbook had been developed, and I was clear about the chapters that needed to be written. The selection of authors who might write various chapters was nearly complete. I had met with more than 15 focus groups to help me clarify important topics and a format for the book. I knew from the beginning that while the book was going to be a "how-to" guide, it would be different from other books written for families dealing with serious mental illness.
The difference would be in the combination of "how to" with "inspiration." The book would also be written in such a way that it would inform families that not only was it okay for them to take care of themselves, but that it was important for them to take care of themselves. The reason for the self-care of the family seemed pretty clear to me. If families were going to put forth effort to ensure good care for their sons, daughters, brothers and sisters, they needed to have the physical and emotional energy to do so.
But as I said, it was during the flight from Dallas to Tucson that the importance of self-care for the family became crystal clear. During the usual pre-flight speech to which most of us rarely pay attention, I was actually listening as the flight attendant spoke to us. A Sourcebook for Families Coping with Mental Illness 28
“Ladies and gentlemen, welcome aboard flight 35, non-stop service from Dallas to Tucson. While we never expect to lose cabin pressure, if at any time during the flight we should experience a sudden reduction in cabin pressure, yellow oxygen masks will drop from the area just above your head.”
The flight attendant went on to indicate that the masks have an elastic band and that they should be securely fastened. Once securely fastened, we were to continue to breathe in a normal manner. The final words were the ones that really hit home in terms of this book.
“If you are traveling with a small child, make sure you secure your mask before you secure your child's mask."
On previous occasions I probably recognized that it made sense to secure one’s own oxygen before assisting your child. On this particular occasion, however, it was an insight. It was as if that flight attendant was helping me draft an important section of this chapter. I imagined that she was standing before a group of families who had a member with a mental illness. The families had just been informed that their sons or daughters had a serious mental illness. The diagnosis was schizophrenia or bipolar disorder. The sons or daughters were in their early twenties and had just been admitted to the county hospital. The admission to the hospital was through the emergency room, where the police had taken them. In my imagination, the flight attendant was preparing family members for possible turbulent times ahead. She was letting them know that not only was it acceptable to take care of themselves, it was important to take care of themselves. If they were going to be of any help to their sons and daughters, they needed to be healthy and energized. They needed to take care of themselves if they were going to be of assistance to anyone else.
There is no need to feel guilty about taking care of yourself. There might be times when things are not going well for your son or daughter. There will be other times when things are going very well. And there will certainly be times when your family member needs your assistance more than others. As a consequence, there will be times when you will need to make yourself more available Your Family Member Has Been Diagnosed with a Mental Illness 29
or be more involved. Regardless, it is all right to recognize that you have needs that are independent of your family member and his or her illness. If you do not take care of yourself, your ability to care for your family member will be diminished.
Learn About Approaches to Treatment and Recovery
There are two main aspects to the treatment of mental illness, medication and a wide variety of approaches to therapy, including psychosocial and vocational rehabilitation. Different systems of care emphasize different approaches. Some psychiatrists are more comfortable with particular medications than others. Some communities have long histories of providing particular types of treatment. Given the fact that there are a variety of approaches to treatment, it is important that you are familiar enough with them to be a knowledgeable member of the team when you attend treatment planning meetings. After all, you know your family member better than any of the staff might know them. You probably have a good idea of what approaches might be most effective with your loved one.
Learn About the Local Systems of Care
Health care in this country, for both physical health and mental health, is in flux. Not only are treatments becoming more focused and much more effective, systems of care are changing. We are in an era where understanding the structure of health care corporations and public health care legislation can be just as important as understanding issues around the biology of mental illness. You will need to learn all you can about the way behavioral health care is organized, delivered and funded in your state and local community. We believe that the more you understand about the system of care in your community, the more likely it is that you will be able to take advantage of it for your loved one. One of the best approaches to learning about local systems of care is to talk to other family members and become actively involved in your local mental health association or the local affiliate of NAMI (formerly A Sourcebook for Families Coping with Mental Illness 30the National Alliance for the Mentally Ill).1
Be Involved in the Care of Your Family Member
Mental health professionals are, for the most part, caring individuals. They have chosen their profession because of a sincere desire to help others. They are also, by and large, an overworked group. A common characteristic of the public mental health system in most communities is that case managers, psychiatrists and therapists all have large caseloads. Because of those large caseloads, they might not always give the ideal amount of individualized, personal care that you might want and expect. The mental health professionals need family members to be active partners in the ongoing treatment of the person with a mental illness. Your involvement can include participating in treatment planning, helping to ensure that your family member complies with treatment, monitoring medication side effects and providing staff with information about successes and setbacks that occur in your family member's life.
“I sell real estate for a living, commercial real estate to be more specific. In the field of commercial real estate there is an axiom that is so true it has become common terminology for everyone, not just those involved in real estate. It is: “The three most important aspects of property are location, location, location.” In living with my daughter, who suffers from mental illness, I have found a similar axiom. “The three most important things a family can do when they are living with and/or dealing with a loved one with mental illness is Join NAMI, Join NAMI, Join NAMI.”
1 If you are not familiar with NAMI, it is a national self-help, support and advocacy organization of consumers, families, and friends of people with a severe mental illness. Many communities have local affiliates. You can phone NAMI at 800-950-6264. The Web site address is www.nami.org. Your Family Member Has Been Diagnosed with a Mental Illness 31
Learn About Financial and Legal Issues
We make the point in Chapters 11 and 12 that financial issues and legal issues are areas where families can have a very specific impact. In Chapter 11, we provide a comprehensive review of the entitlement programs and direct you to additional resources if you want to learn more.
In Chapter 12, we address the issue of guardianship, conservatorship and protecting assets that you might want to provide for your family member. It is also very important, however, for you to work closely with your family member's case manager or primary clinician concerning financial and legal issues. It is also appropriate, depending upon your situation, to consult an attorney and/or a financial planner.
Consider Joining Support and Advocacy Groups
There are so many reasons to get involved in support and advocacy groups that we cannot even begin to mention all of them. We do, however, want to mention the most important reason: the comfort you will feel from knowing that you are not alone. There is often nothing as helpful as knowing that other families are dealing with many of the same issues that your family might be dealing with. To know that you are not alone somehow makes the struggles more bearable. Being part of a "community of families" can also make the good times even sweeter.
The support that you receive through a group like NAMI will likely be of two types: unconditional acceptance and the wisdom that comes from experience. You will meet, among others, doctors, lawyers, plumbers, teachers, salespeople and homemakers. The bond that brings them together is the mental illness of a family member. They understand the impact of the illness and they understand stigma. They understand what you are feeling like no one else possibly can. They can give you strength when you feel as though you have nothing left. NAMI chapters also have a collective wisdom that you can tap into if you ever find yourself confused as to what to do next. There is a good chance that through NAMI you will find a family that has had to deal with issues very similar to just about anything that you might be dealing with. A Sourcebook for Families Coping with Mental Illness 32
Give Yourself Permission to Grieve Your Loss
A teenage child is suddenly killed late one night, struck by a drunk driver. When we hear about such tragedies in the news, we naturally imagine what life will be like for the surviving family members. It is human nature to feel sad for the parents and siblings of the victim (and maybe some relief that our family members are safe). The grief and loss that parents must endure after a child has died has been identified as one of the worst possible traumas to affect a family. A family never really gets over this loss. In time, however, some people adjust and are able to move on with their lives, even though they are permanently changed as a result of the tragedy.
Do the parents of a child diagnosed with a serious mental illness have anything in common with the parents of the murdered teen?
In one sense the answer is no — nothing can compare with the death of your treasured child. Yet, from another perspective, parents struggling to cope with the diagnosis of a serious mental illness can identify with the pain and loss.
The person learning to live with a serious mental illness has to adjust and cope with his or her symptoms, while the family members often need to accept the loss of dreams, hopes and desires for their child.
A diagnosis of mental illness is often made in late adolescence and generally alters career and education plans. A picture of a son or daughter getting a university degree and embarking on a successful career may need to be "repainted." Your child may not choose to marry and there might not be grandchildren. There might be hospitalizations, long term treatment in the public mental health system, and an increased need for parental involvement and supervision. At a time in life when many parents believe that their
While we hope that this book is useful and of some comfort, it is not intended to take the place of the support and wisdom that occur through local and national support and advocacy groups. We urge you to consider getting involved in such groups. Your Family Member Has Been Diagnosed with a Mental Illness 33
parental role is about to change in the direction of less involvement with the care of the children, the diagnosis of a serious mental illness could mean increased involvement. There are a whole host of other changes that require adjustment and time and can be viewed as a type of grief over the loss of one's image of a "normal" child.
It is important to understand that there is no one right way to grieve your loss, nor is there a universal period of time needed to "complete" this process. But, all parents and family members should give themselves permission to grieve in their own way. They should recognize that they will be spending weeks, months or even years, coping with the realities of caring for a family member with a long-term illness.
Mental health professionals have identified a number of stages of grief that people can pass through. In essence, these stages are coping tools that we use to help us gradually come to accept loss and change. Both individuals newly diagnosed with mental illness and their family members are going through a grieving process, and thus a basic understanding of the grief process is important.
Elizabeth Kubler-Ross, a noted psychiatrist, identified five stages of grief that people might….pass through. The first is denial. In the denial stage, people cope with loss by simply refusing to believe that anything is different. They reinterpret reality or flat-out deny what has occurred. Consider, for example, the case of parents who try desperately to explain away their daughter's psychotic symptoms as simply the result of too much stress or perhaps a food allergy. It is of course much more comforting to believe that your child has a less-serious condition than a severe mental illness. Perhaps a consultation with a famous specialist or some special treatment will allow everything to get back to normal. Eventually, however, the weight of evidence accumulates and denial is no longer effective as an explanation or a coping technique.
A later phase of grieving is referred to as bargaining. In this stage, people attempt to negotiate with a higher power. "If I take up intensive prayer, I can cure this illness" is one form that bargaining can take. A parent of someone with a mental illness can make a private "deal" to contribute all their money to charity if their child can be cured. Or, bargaining can be smaller in scale. Sometimes A Sourcebook for Families Coping with Mental Illness 34family members will pray that their child be given only a mild form of illness and in response they promise to behave in certain ways. Bargaining can have some positive benefits. For example, someone who promises to be a better person and help others in exchange for better health of their loved one might in fact help both his loved one and others in society.
Some people still grieve despite their efforts at negotiation and then they can become bitter or dejected. These stages are labeled anger and depression and are understandable reactions to loss. The newly diagnosed person and their family members have justifiable rage against the world. This grief stage is often characterized by a belief that the world is not fair. "There is no good reason why my child should have been cursed with schizophrenia." Anger may cause family members to lash out against those who are trying to help. At some point the anger will end and might be followed by a period of profound sadness and depression. This phase is the classic way grief is thought to be experienced. Tears, isolation, lack of energy, and profound feelings of loss or maybe guilt can characterize this stage. The family members are mourning.
Finally, grieving can end when the family comes to understand that mental illness is a part of their life and they must make the most of the situation.
And, unlike the parents of the murdered teen, there is plenty of room for hope and recovery. A life with mental illness is not a life that is over. It is a life that is changed. But it is also a life that can be rich and fulfilling. There are numerous books available at any bookstore on grief and loss. There are also professional services available. What is key is for you to understand that you will likely go through a grieving process. Having knowledge about how grief affects a person will assist you in moving through that process in your own time.
To read the entire publication please visit: http://www.nami.org/Content/Microsites316/NAMI_PA,_Cumberland_and_Perry_Cos_/Home310/Home_and_Running_Calendar/Source2ndEdition.pdf