2008 Affiliate President Conference Call Schedule Posted Calls will be held from 12:00 to 1:00 PM on the Thursday prior to the Board of Directors meetings/calls. 2008 Board of Directors Meeting Schedule Posted Family to Family Teacher calls: 2nd Wednesday of the month. If you would like to be on the call, please contact Lisa Moore at lmoore @namitexas.org.

Getting to the Heart of the Matter

What is this all important empathy? It is the capacity for participation in another's feelings or ideas without being judgmental. It is the ability for you to listen and to respond with understanding, not judgment. Support groups give you this ability to understand without judging the pain of other families, of those with the mental illness. All families go through certain emotional responses when faced with trauma. Mental illness is certainly a family trauma and it impacts everyone in the family.

Families have many feelings and emotional reactions to mental illness. These emotions are described in many textbooks but here we call them Cycles of Emotional Responses. These are also the stages of grief we go through as we deal with the shock of the diagnosis and the long term realities of a serious brain disorder.

Cycles of Emotional Responses

CYCLE: 1 Shock and Disbelief/ Denial and Isolation

CYCLE 2: Developing Awareness/ Anger, Bargaining, Depression

CYCLE 3: Healing and Renewal/ Resolution and Acceptance

• Recognize that we have an immense need for safety. It is recommended that families try to find safety in small ways, such as having a close friend or family member stay in touch with them.
• Families need to be encouraged to seek the comfort of other families who have been through this. These families are much more willing to talk, to share their experiences, and their mistakes and successes. Above all, they understand what each other is going through.
• Family members should not be made to feel that they have to be brave. Holding in feelings takes more energy than releasing them. Families need to be given permission and encouragement to let others nurture them. If there aren't receiving the comfort they want or need, they need to ask for it. They are often afraid to be too forward, fearing to discuss the unknown of 'mental illness.
• Families are urged to be themselves. Feelings of confusion, restlessness, and agitation are normal. The family member should be encouraged to give themselves the leeway to experience whatever they are experiencing without being critical of their behavior.

As families move on, the insulation of shock is stripped away and they are left feeling raw and exposed. This stage is full of emotional responses that can be severe and debilitating to families. Crying outbursts may occur in waves, Feelings of anger, guilt, and shame may be overwhelming. This cycle also usually includes: preoccupation with the illness and the ill relative; anxiety and restlessness; prolonged stress and, physical symptoms including loss of appetite, difficulty sleeping, digestive problems, fatigue.

The main task for a family member in this stage is to experience the pain and not block the feelings of sorrow, anger, and guilt. It is important not to close off the awareness of loss, even though it might seems easier at the moment to deny the pain it brings. The following steps are recommended to family members coping with this stage of grief:

• Realize that the pain of loss must be experienced. It is important for you to understand that all you can do at this point for the person who is grieving is to say that they will have to go through this pain. Remember that family members will get tired of hearing this. So expect to hear "All of you say that I have to get through it, but how much more do I have to go take? Isn't it ever going to get better?" Your answer can simply be, "Yes."
• Let them know that it is normal for support to dwindle during this period. Their loved ones have not forgotten them, but their ability to handle the prolonged crisis may be limited. You will need to remind support group members that they cannot expect everyone in the family to react the same way. Reactions vary depending on personalities, on relationship to the ill person, on personal beliefs about brain disorders, and on the amount of support we can each muster.
• Give them permission to cry. Some people worry that they are crying too much. Unless it is interfering with some important life function, cry away.
• Encourage them to vent their anger. Reaffirm that anger is normal. It is absolutely normal to be angry at an ill relative for not listening to you, for not letting you 'control' the situation and make it better. It is easier to be angry and stay angry than to be scared.
• Suggest that they talk about feelings of guilt and shame with someone they trust.
• Encourage them to talk about their loss.
• Remind them that they do have friends sticking it out with them. We all have someone who does show he/she cares about us in small ways (picks up our newspaper, waves as we drive by, shares coffee). We need to remind ourselves of these acts everyday, simple kindness.
• Encourage them to exercise. Physical workouts will help relieve tensions. Many experts strongly recommend an exercise program of at least 20 minutes three times a week.
• Tell them it's okay to not rely solely on their own family even if that has been the family pattern in the past. Brain disorders are complex illnesses with far reaching impacts. They will need the support and experience of many people other than family to guide them through their situation.
• Encourage them to seek out self help support groups. Encourage them to attend three or four meetings before making up their minds about the benefits of the support group. It takes that long to let the support of the group "seep in" for most people.
• Suggest that they prepare for holidays and anniversaries. These are really difficult times for us because they highlight the loss within the family. It is normal to find care givers experiencing chronic grief at these times.
• Don't try to predict how long these painful phases will take.
• There is no timetable in grieving.
• Tell them not to conclude that they are not normal. It may feel that way, but always remember that the feeling will pass. Caregivers will need reassurance that they are survivors and that they are experiencing what others have experienced. Sharing "common ground" is always helpful at this point.

The third emotional cycle is healing and renewing. You feel as if you have reached a turning point. It may be achieved by a vacation, a new job, a new schedule. You may relinquish certain roles to others. You feel as if you are your own center of stability. You no longer have the prolonged feeling of stress, and your body seems to have gained some rest. You may find sleeping patterns restored. Families in this cycle need to:

• Talk about the relative with mental illness and the impact of the loss on the family and on themselves.
• Maintain a health and physical fitness regime.
• Acknowledge and accept the changes that have occurred with yourself.
• Allow personal restrictions to ease, such as what other people think. Try to recount some other gain that has come to you during this struggle with brain disorders.
• Relapse or anniversary reactions may pop up when they are least expected. They may experience the same emotions found earlier in the grieving period. They should not be afraid. They are not relapsing. Don't try to hurry the grief process. For many of us, the grief over the loss through a brain disorder is bringing on the grief over other losses, too. It is complicated and personal.
• Know that solitude (not isolation) gives an opportunity to grieve, to relax, to be replenished.
• Consider seeking professional help- especially if they cannot return to work or deal with routine tasks after about six months of intense grief.

Many of us dealing with mental illness throw ourselves into activities so that we do not have to deal with the relatives- we do not have to face the pain. It is easier for us to be busy than it is for us to comfort the pain of loss. Those of us who have pitched ourselves into advocacy will tell others that we have come to accept the mental illness. But, we get easily upset when something doesn't go our way- when others won't get involved at the same level of activity that we are.

It is important to remember several things about these "Emotional Cycles":

• How a person responds to trauma may not follow exactly those responses suggested in the different "cycle." Each person will respond in his or her own way.
• People do not necessarily go through the "Cycles" in order.
• People can and will go through the "Cycles" many times.
• The person with the mental illness goes through these "Cycles" too.

It is important to remember several things about families- these Emotional Cycles are normal emotional responses to trauma. They help you protect yourself from being overwhelmed. You are "buying time" so that you can take in what is happening a little at a time. It is impossible for any of us to know how an experience has impacted everyone else because our lives are all so different. A problem that can be dealt with by one person may seem horribly impossible for someone else. Your own emotional responses to the trauma of mental illness make up your experience with the mental illness. How your spouse, your children, other relatives, or friends have responded to the trauma of mental illness is probably different from your experience.

Given a choice, family members will always hide their feelings. We all try to make it easier to cope by not thinking or talking about how we feel. We've learned that if we talk about how we feel, the anger, the tears, the grief are too close to the surface. It is easier to keep all of that at a distance if we do not concentrate on ourselves. Instead, we talk about our family member.

You may find it helpful to use the following as a guide to list your needs.

FAMILIES IN THE CYCLE OF SHOCK/ DENIAL NEED:

• Sympathy and comfort.
• Reassurance that it is all right to break down.
• Delivery from guilt. ("I am not the cause.")
• Unconditional and uncritical friendship.
• Basic information about diagnosis and prognosis.
• Concrete advice and direction.
• Information about what their ill family member is experiencing.
• Validation that their behavior is normal and understandable.
• Information on the financial aspects involved in this illness.
• Assistance in managing daily tasks of living (gifts of food, child care, housekeeping).
• A trusted confidante or therapist.
• Introduction to NAMI family members who have lived through it.

FAMILIES IN THE AWARENESS/ BARGAINING/ ANGER/ DEPRESSION CYCLE NEED:

• Concrete information about the biological causes and course of mental illness.
• Help with the pain of dealing with catastrophic illness.
• Encouragement to vent their negative feelings.
• Recognition of the sacrifice and devotion they offer in the care of their mentally ill relative.
• Reassurance that it is not their fault if the worst should happen.
• Assurance that they are doing everything they can.
• Respite and time to restore their stigma.
• Protection from criticism and social stigma.
• Inclusion in the treatment process to restore the sense of control.
• Acceptance of their need to be hyper vigilant and "over involved."
• Participation in NAMI family education programs and support groups.

FAMILIES IN THE HEALING/ RENEWAL/ ACCEPTANCE CYCLE NEED:

• Encouragement to express grief: comforting around the pain of inconsolable loss.
• Help with adjusting to long term chronic illness in someone they love.
• Reassurance that their preoccupation with advocacy is healing for them and helpful to others.
• Recognition of their determination and dedication.
• Permission to put aside work and have fun.
• Patience with their frustrations at the slow process of change.
• More education on skills.