For families of depressed, a lifeline
Julie Totten knew her brother was unhappy, but she didn't realize how unhappy until he took his life.
That was 15 years ago. Totten since has made it her mission to find out what signs she had missed, and has launched what may be the first support group in the nation specifically for family and friends of people with depression and bipolar disorder.
''At the time, I didn't know what was wrong with him," Totten said. ''We didn't know he had depression."
He had physical symptoms -- headaches and low energy -- but no one saw them as manifestations of mental illness. ''I kept urging him to see a doctor," Totten said, ''and I thought I had done my job.
Totten, who was raised in Newton, spent months after her brother's death trying to learn more about why people kill themselves. She noticed similar physical symptoms of depression in her father. She was hesitant to bring it up, afraid he would dismiss her concerns.
She finally persuaded him to see a doctor by suggesting that his symptoms were caused by the flu. Then she called the doctor and told him she was worried her father really might have depression.
Hearing from his doctor that he had a ''real illness" prompted her father to seek treatment, Totten said, adding that he now is doing well.
Totten wanted to use her own experience to help others, but she couldn't find an organization that focused especially on families' needs. So in 2001 she decided to start one.
Families for Depression Awareness began with Totten as its only staffer, and with a desk in her apartment as its headquarters. Now the organization has its own offices, four full-time staff members, and a national reach through its website, which was launched in 2002.
The advisory board has expanded from five clinicians to nearly 50 healthcare professionals, family members, and patients. The organization helps parents, spouses, and siblings find information on services, such as respite care, or just a sympathetic ear.
Gloria Pope, a spokeswoman for the national Depression and Bipolar Support Alliance, said most groups focus on people suffering from mental illness rather than on the needs of their family members. Pope said she did not know of another group like that in Waltham.
On the website for Families for Depression Awareness, families share their experiences, comforting others in similar situations with the knowledge that they are not alone. The group is also developing ''wellness guides" that help families gauge what treatments are or are not working for their loved one. A version for teenagers is being tested.
Among the advisory board members is psychiatrist Linda Zamvil, whose practice is at Advocates Inc., which has offices in Marlborough and Framingham.
''When you lose touch with reality, you're not capable [of evaluating your own mood]. You depend on other people," Zamvil said. ''Even with the adult patients, I really like to have family members involved: You don't do things in isolation."
A Newton mother agreed to talk about her experiences raising a son and daughter who have bipolar disorder, also known as manic depression. The disease is characterized by sudden, extreme shifts in a person's mood and energy level. She asked that her name not be used, out of concern that her children, who are now adults, would be stigmatized.
The woman, who is a physical therapy professor at a local university, said at times her life would be ''overwhelming" as she coped with her children's erratic behavior and with the hurtful comments of family, friends, and her children themselves.
''I think it's important to look at mental illness as a medical illness," she said. ''If we called it seratonin deficiency, it'd get a lot more sympathy. There's significant pain and sadness that families feel, just like when a family member gets cancer."
One particularly scary incident she recalled was when her daughter kicked a hole in their car's windshield as they drove along Route 128. A year later, her daughter was diagnosed as bipolar. But knowing that her bizarre behavior had a name and an explanation was hardly reassuring: It presented a whole new set of questions.
How could she keep her daughter safe during her depressive and manic episodes? How much help could doctors provide? What should she tell the schools? What should she tell outsiders who she sensed blamed the illness on bad parenting? And would life ever be normal for her family?
''A lot of times you have to hunt" for resources, she said. ''There's not a lot and they're not easy to find. You go to the hospital and you see support groups for this, support groups for that, but none for people with children who are bipolar."
She said her first reaction to her daughter's diagnosis in 1996 was to read everything she could on the illness -- journal articles, books, research studies. She eventually got in touch with national and local organizations that focused on mental illness or depressive disorders. But she found no single source for basic information and advice.
Five years later, she found her source in Families for Depression Awareness. It was about the time her son was diagnosed. She now serves on its advisory board.
The group's website is just what one needs, she said, when ''you are alone in your house, it's 3 o' clock in the morning, and you just have these questions you need to have answered."
Her daughter is doing well on medication and holds a job; doctors are trying to find the right treatment for her son. Despite all the trials, she wants people to realize that her children are not their disease: They are both intelligent, funny, hard-working people who have as much potential to succeed as anyone else.
''I and my kids have a really good quality of life," she said. ''The difference between me and other people is that it's a little more -- a lot more -- work."
Stephanie V. Siek can be reached at ssiek@globe.com.
Resources for parents and families
Families for Depression Awareness: At www.familyaware.org
Parent/Professional Advocacy League, the state branch of the Federation of Families for Children's Mental Health; at www.ppal.net or call 617-542-7680
Child and Adolescent Bipolar Foundation: At www.bpkids.org or 847-256-8525
National Alliance on Mental Illness-Massachusetts: At www.namimass.org or 781-938-4048
Manic Depressive and Depressive Association of Boston, which offers support groups for people with depressive disorders, their families and friends; at www.mddaboston.org or 617-855-2795
American Academy of Child and Adolescent Psychiatry: At www.aacap.org or 202-966-7300
Signs of depression
Lasting sadness or anxiety
Decreased energy, feelings of being ''slowed down"
Difficulty concentrating, remembering, or making decisions
Sleeping too much, or inability to sleep
Feelings of guilt, worthlessness, or helplessness
Chronic pain, digestive disorders, or other persistent bodily symptoms not caused by physical illness or injury
Loss of interest in activities that were once enjoyed
Thoughts of death or suicide
Signs of mania
Excessively ''high," overly good mood
Extreme irritability
Racing thoughts, talking very fast
Easily distracted
Provocative, intrusive, or aggressive behavior
Unrealistic beliefs in one's abilities or powers
Spending sprees
Denial that anything is wrong
Signs of bipolar disorder
Five or more of the above systems, lasting almost every day for at least two weeks, plus at least three symptoms of mania occurring almost every day for at least a week
SOURCE: National Institute of Mental Health 
