The 100 Individuals interview series continues with a Q&A with Paulette, who retired from the Board of Education and now works as an adjunct at St. John's University. She has a son, David, and a daughter, Chrissie. Her husband has been gone 13 years. Paulette has been involved with the National Alliance on Mental Illness [NAMI] for the past 11 years. NAMI-Staten Island honored her as a volunteer of the year in 2008.
Today we talked about what it was like when David first got sick, how the Family-to-Family class helped her and can help others in the same boat, and how her daughter responded. The dialogue continues next week with a look at how things turned out and words of advice and comfort for other family members.
CB: Can you tell us about Family-to-Family and why it is of great benefit to people?
P: Yes. Although I've been attending the support group over the years, this is a different approach from a support group. It's set up for a 12-week commitment. Each week we give them handouts. It's an educational support group. We have topics, and the topics range from understanding symptoms-the early symptoms, the active symptoms, the residual symptoms-and we cover schizophrenia, bipolar, depression, borderline personality disorder and OCD. Each week we certainly allow time for lecture, discussion and questions and answers, and for families to share their stories.
We offer practical advice, we do a problem-solving workshop, a communication skills session, we do an empathy class where we stress how one family member's mental illness affects everyone in the family. We bring in our consumers to share their stories and answer many questions; we have our pharmacist come for a medication week. The course gives families what we believe in so strongly: education.
CB: How does that help?
P: The education is for the purpose that they gain confidence in loving, working with and helping their loved ones. We stress that they as caregivers also need help to maintain their balance in life so that they can be strong and healthy: physically healthy, mentally healthy and spiritually healthy. We help them find ways to get their strength and coping techniques. The main thrust from us is to give them knowledge to educate them about ways to work with the system, to talk to the psychiatrist or therapist or any of the wonderful professionals they are dealing with or their loved one is dealing with. We have a crisis file: we help them if they are in crisis to get their loved one into the hospital and how to work with the staff in the hospital, how to set up a discharge plan and how to be sensitive to where their loved one is at while they're recuperating and getting their life back together.
I always tell our family members, "We're with our loved ones 24/7 and we can't wait for the perfect medication or perfect doctor, we have to be the ones to communicate with them in the way that's going to help them the most. Of course we're emotionally involved when mental illness hits our family. We're frightened and worn out and confused, and emotionally hurt also so that makes it hard for us to sit down and have a nice conversation with our loved ones."
So I believe strongly our course shows there are ways to talk and to diffuse anger, and there are ways to get confidence so they can have a good relationship with their loved one. So that's what we offer and it works. Families come out stronger, more peaceful and hopeful. That's my hope: that a person comes away more hopeful.
CB: What can you say to a mother or father who bats their head against a treatment team that won't talk about their adult son or daughter?
P: We offer them a few informal as well as formal suggestions: You can write a letter or make a phone call to the professional and say, "I know that there are privacy laws, but we want you to know this is what we're seeing, this is what we're observing." I encourage them to keep a journal-a log-and jot down the behaviors or symptoms, anything they feel is not the norm of behavior. If they have education behind them and understand certain symptoms and a range of symptoms they're encountering in their loved ones, we encourage them to at least get that info to the doctor, knowing that he or she doesn't have to reveal or say anything to them of course unless their loved one has given permission. One way we can get around it is to tell the family members to contact the professional through a letter or phone call.
Of course that's a frustrating and difficult aspect, and I've said to them, "Build a rapport with the psychiatrist or therapist. Treat them with respect and thank them for all the good they're doing. Build an honest, professional rapport with them so that they know where you're coming from, that you have knowledge and know what you're talking about and aren't reacting." You would be following our guidelines as to what to look for as respect to bipolar, schizophrenia or any of the other mental illnesses. So that you don't worry you're exaggerating and that your son or daughter is just going through a bad time. We still emphasis the more knowledge you have, the more you can present it in a way that the professional can understand or at least listen, and take the info and use it in their sessions.
CB: You became active in NAMI because your son was diagnosed with SZ. What was running through your head when he had his break?
P: Oh, well. When David had his break-he was in the hospital four times. The first was a series of months where his behavior seemed bizarre, unusual. He was not able to focus, couldn't carry on a conversation and was repeating himself, losing things and getting lost. My feelings all through those years were fear and hoping against hope that maybe I was exaggerating, maybe he was just going through a bad time. I had just lost my husband so David at that time was only 19 and I thought he was angry or grieving and not knowing how to express his grief.
I was worried, I was afraid, I was confused. I felt embarrassed to tell my friends what was going on because so many of them had been good to me during the illness and death of my husband so I didn't want to put them through worry and fear for my son. I did get him to a doctor-and as happened to many of us, the diagnosis wasn't accurate. Until he had a psychotic break and he came home hysterically crying that people were going to slice his face. At that time my daughter and I brought him to my Mom and Dad's house and we called an ambulance that brought him to the hospital. That's when they gave me the diagnosis of SZ and in some strange way I was almost relieved to know there was an illness or a reason he was behaving this way.
At that time I was already in NAMI because he had been in the hospital even though he didn't have the diagnosis of SZ right away. I was attending meetings and people at the support group were telling me, "Change doctors, that doctor isn't giving you the right diagnosis." Because the people in the support group were listening to me every week telling them what I was observing with my son and I don't think he's on the right medicine, he's not getting any better, I think he's getting worse.
So NAMI again I can't thank enough because they were telling me to change doctors or at least be aware that something wasn't really right. The first time I went to a NAMI meeting was because David's first doctor said to me, "You would be helped a lot more for yourself if you joined a support group of other families dealing with what you're dealing with." Because I kept calling her up all the time and asking her so many questions, and she said, "I can't help you. It would be wise to join a support group."
I hope that answers your question. I prayed so hard: "Dear Lord, I just lost my husband and now I fear I'm losing my son." So yes I was frightened, worried, all of those feelings. When we got the diagnosis of SZ I knew that now we could help him and so we did, we did everything, got the right doctor and the right therapist. David joined a peer support group, he went back to college one course at a time and he managed to get a part-time job. He's still seeing his same therapist and doctor. And I've grown and I've learned. We can sit and talk and joke again. Little by little his personality has come back and his sense of humor has come back.
CB: How did David's breakdown affect your daughter?
P: As I mentioned before, when mental illness hits any family, everyone is affected and everyone hurts, and everyone feels it differently. Even in my situation my daughter is two years younger than my son and I really don't know that I 100 percent understood how bad she was hurting, because I expected more from her. Families should know that we look at our son or daughter who is succeeding and healthy and doing well in school as a great personality and great friend. I would say, "Can't you take your brother with you, can't you take your brother with you?" And I didn't realize how much she was hurting. The best advice that was given to me was to get her therapy and she saw a therapist. All this happened a year after losing her dad, starting college and seeing her brother fall apart.
So our siblings, our other children, hurt and in Family-to-Family I urge the parents to bring the other children. They learn, they get compassionate and they also know they need to have their life and still have some kindness and understanding for the sibling who is hurting, who has the mental illness. To have one child who is doing well and one child who is struggling is hard for a Mom yet we love all of our children and have to understand that the well sibling is hurting also and they don't always get a chance to express what they're feeling. So we have to give them the opening to live their life to the fullest and go for their life and know that they have a brother or sister who is finding life a little harder. The siblings need our help also.
And for my daughter I was so grateful she and I went for the Family-to-Family training. We both taught the course together and she went on to become a social worker. I think a lot of what prompted her in that field was my son. She's since married and I would say there was not a dry eye at the church because my son walked her down the aisle. That to me was really big because she witnessed him at his worst and to ask him to walk her down the aisle in marriage was touching and meaningful.
For information on the Family-to-Family course taught at a local NAMI affiliate near you, call the national hotline at (800) 950-NAMI (6264).
Published On: May 18, 2009