September 2006
Health and the Filipino

An illness in the family

Bipolar disorder and other mental-health problems represent an immense "undefined burden" for families, communities, and countries.

“THERE ARE times when your heart is overflowing with love for her,” says Ruby of her mother. “And there are times when you really want to kill her.”

Ruby is not her real name. Her mother, now 62, was diagnosed with bipolar disorder 24 years ago. Also called manic-depressive illness, what her mother has is a long-term brain disorder that causes unusual shifts in a person’s mood, energy, and ability to function. While every person goes through normal ups and downs in his or her life, people with bipolar disorder suffer from severe symptoms that can result in damaged relationships, poor performance at work or school, and, for many, even suicide.

Ruby, however, describes the illness simply as “heartbreaking and cruel.” How else could she describe it? Her mother can spiral down fast to depression and become completely non-functional, then just as quickly swing to mania to a point where she becomes a stranger even to her own daughter. Whenever that happens, says Ruby, the gentle and caring mother she loves is replaced by a woman who is selfish, crass, abusive. And Ruby finds herself thinking: “This could not be the same woman who, night after night, used to lull me to sleep with soft lullabies.”

There was a time Ruby wished she could will her mother’s problem away. But right now, she thinks she has come to accept that her mother is ill — and will be for the rest of her life. Yet that is not the same as saying that she is used to seeing her mother become a stranger almost in a flash, because that is almost always a shock, even if it has already happened a thousand times before, and will happen a thousand more times in the future.

Ruby says she detests the illness, and too often, she finds it hard not to hate the woman it inhabits, too. When resentment sets in, she says she wants to yell to her mother: “You were supposed to take care of me, my siblings, and instead we are taking care of you! If that is not betrayal, what is?”

The World Health Organization (WHO) estimates that globally, some 27 million people are affected by bipolar disorder. According to WHO, bipolar disorder and other mental-health problems represent an immense “undefined burden” for families, communities, and countries. “Although obviously substantial,” WHO says, this burden has not been measured efficiently because of the “lack of quantitative data and difficulties in measuring and evaluating.” But it is a burden that weighs heaviest on immediate family members, because all the love one feels for a child, parent, or grandparent with mental illness can be so quickly replaced by hate — that then gets transformed into guilt and self-loathing.

“It is the most horrible feeling, to want your mother to die,” says Ruby. “I do. I want to kill her. Please just die, just die, evil person!”

Just as many cases of mental illness remain hidden and unreported, so do the anguish and pain their family go through remain unaddressed. Oftentimes, those who have the mental disorder and those who take care of them both go without the professional help that they need. In Ruby’s case, her anguish is shared by her father, and her six sisters and brothers. Yet instead of diminishing the pain, sharing seems to have more magnified it.

“WE KNOW it’s prevalent,” Philippine General Hospital psychiatrist Norieta Calma-Balderama says of bipolar disorder in the Philippines. “We just don’t know yet the exact numbers.” There is an absence of comprehensive studies about bipolar disorder as well, which is not really surprising in a country where having even a hint of mental illness in the family could still hurt reputations.

Psychiatrists now know much more about bipolar disorder than they did three decades ago, when Ruby’s mother first began showing signs that she was unwell. At the time, someone who showed symptoms of mental illness was dismissed as “insane” and brought to a mental institution, with almost no hope of rejoining society. Today, says Balderama, “we know that a person with bipolar disorder, if treated properly, can function normally and lead a productive life.”

Tell that to Ruby, however, and she will say you don’t know what you’re talking about because you’re not taking care of a loved one who is manic depressive. Her mother was not institutionalized. She was treated by specialists. The family formed a protective cocoon around her. But all these didn’t seem to make a difference — at least as far as Ruby can tell. Perhaps it was because the treatment then was simply not as effective as those available now. All Ruby knows is this: “My mother could have done so much if she were not ill. The quality of her life has diminished.”

Ruby says her mother was a voracious reader. “If Mama did not read, and if she did not fill our house with books, I never would have learned to read too,” she says. “I read because she reads.”

Her mother accomplished a lot while she was young, says Ruby. A consistent class topnotcher, she snagged a scholarship at 16, and was sent to the States to study there for a year. “Imagine that this was the ’60s and it was a very big deal,” Ruby says with pride. “There was a fiesta before she left.”

Ruby’s mother was a popular student at the University of the Philippines, where she was a student council member. She was vivacious, Ruby says, adding, “People really expected her star to rise. I think that has been a great source of disappointment for her, being unable to do what she wanted to.”

As a young bride, her mother had quit teaching to concentrate on raising a big family. But she also continued to have an interest in the arts, which Ruby’s father encouraged. Yet once the bipolar disorder had her in its grip, Ruby’s mother could no longer sustain anything she started. Says Ruby: “Maybe that is the curse of this illness. It becomes extremely difficult for them to live their lives to the fullest.”

“She was such a gifted storyteller,” she recalls wistfully. Her mother, Ruby says, did not only read stories to them, she also made her own stories, with her children as the characters. Most importantly, she encouraged her children to enjoy their young lives, welcoming them with a smile even when they came home sporting deep tans after a day spent under the sun. “A mother like mine,” says Ruby, “who encouraged her children to learn and to play is certainly one who was kind.”

Her mother is kind, she says, correcting herself. And laidback — “Mama was never complicated.” Until she began to have her “episodes,” that is.

BIPOLAR DISORDER typically develops in late adolescence or early adulthood. But experts say there is no exact time frame for the onset, as some people can have their first symptoms during childhood, while others, later in life. Often it is not recognized as an illness, and it is likely for a manic depressive to go untreated for years before his or her problem is correctly diagnosed. According to Balderama, bipolar patients on average are diagnosed properly only on the seventh or eighth year of their illness.

As children, Ruby and her siblings probably thought their mother somewhat strange, but still wonderful and, on most days, a delight to be around with. Sometimes, their mother would wake them up at four in the morning, just so they could gaze at the stars. They even had a chant. “I don’t remember it exactly now but I remember we clapped our hands and did a little dance,” Ruby says. “Mama told us that by doing that, we would absorb the powers of the stars.”

But then there were also incidents like one that occurred during the late ’70s. In the middle of the night, their mother woke them up, not to gaze at stars, but to accompany her to Malacañang. They were then just four children in the family; Ruby, the second child, was only seven years old. The country was under the dictatorship and there was a curfew. But Ruby’s mother was adamant that they had to go to the Palace because she had to talk to the president.

The police stopped their vehicle at the Palace gates, and trained their armalites at the insistent woman, her four frightened children, and the family driver. “It was scary,” recounts Ruby. “I remember we all started crying, begging her to go home. And that was what convinced her to turn back.”

Ruby was already 11 when her mother was finally diagnosed with bipolar disorder. Her father had taken her mother to specialists in the States and Japan before she was pronounced to have the illness. Her father then sat down with the two eldest children, which happened to be Ruby and her ate. He told them, “Mama is ill, we all have to help out.”

“Papa was also at the end of his rope,” says Ruby. “He did not know what had happened. It was not the woman he loved and married. She was different.”

She says she knew her father needed help, but at first she resented being asked to help take care of her mother. It was only later that she realized how “wrong” it was to feel that way. “It was only fair that we would help Papa,” she says. “No one will ever be able to understand, no one will be able to help Mama and the family, more than ourselves.”

Ruby’s eldest sister took over the role of the mother in the family. She was not even 15 at the time, but she went to market, planned and cooked the meals, made sure all of the children kept strict bedtime hours and were awake on time, ready for school. Ruby’s ate also managed the family’s finances. Ruby was the younger set’s babysitter, a task she enjoyed. She says even now, “I had it easy. Take them to the playground, tell them stories. What was so difficult with that?”

But the younger ones (four boys after Ruby and then another girl, the family baby) soon took on responsibilities at home, too. Even the boys were not spared, though the three sisters would grumble they had the more difficult tasks to accomplish. Ruby, however, reasons that maybe this was because the girls were indeed innately more responsible. Besides, all seven of them had to band together not only to protect their mother, but to help each other out.

THE WAY Ruby’s family “reversed” their roles as soon as the mother fell ill is a coping mechanism common among those who have a member suffering from bipolar disorder, says Balderama. “The family will adjust so they can all help to manage the illness,” she explains. Usually, she says, the pattern of caregiving will follow whatever structures already exist within the family. In Ruby’s family, however, it was the primary caregiver that now needed care, and so the older girls stepped up.

Experts say that the combination of medication — to stabilize the chemical imbalances in the brain — as well as psychiatric counseling, is the best strategy for managing bipolar disorder. Indeed, it’s a prescription that Ruby’s family has been following for more than two decades now. “Patients need to strictly comply with the regimen,” says Balderama. Otherwise, she says, the episodes will come more often and there will be less hope for functioning properly.

Balderama thinks Ruby’s mother “could still have been a mom. Her bipolar disorder didn’t mean she was incapacitated.” Whatever role reversal must be done — such as young children assuming the roles of a parent — is, ideally, a temporary arrangement, she says. “You can change that,” says the psychiatrist. “It doesn’t have to be that way, so that the burden becomes less and the patient can also try to function normally.”

Ruby herself now admits her mother could have helped herself more, instead of relying on them. Yet she says she and her siblings probably turned out better because of their mother’s illness, which made them mature faster.

“We took on responsibilities at an early age, and we had to rely on ourselves and stand up for ourselves,” Ruby says. “Also, we learned early on what was right and wrong, by ourselves, without others telling us — least of all our mother, from whom we should have been taking our cues, but who was not equipped to provide them.”

“We channeled ourselves to being better people,” she continues. “Or at least, to not being victims. That is what I refuse to be. I will never be a victim. I may be pained, but I will not be a victim of my mother’s illness.”

Today it seems that no one among them (the eldest is 38, Ruby is 35, the youngest in her late 20s) is such a “victim.” Ruby’s psychiatrist told her, in fact, that compared to other families with a similar situation, theirs has survived with minimal scars. “All of my sisters and brothers turned out to be good people,” says Ruby. “Growing up in an atmosphere that was so unstable, we could have easily turned out badly but we did not.”

As for their father, Ruby says their Papa is the one who is consistently the kindest, and most understanding, toward their mother. “I do not know how he does it,” she says. “Sometimes I rib him, ‘You’re not related to her anyway. Why are you so good to her?’ Love? Damn love.”

IT IS Ruby’s father, though, who is always the last to know when an episode is about to happen. Perhaps, Ruby says, it’s her father’s way of coping with his wife’s illness. “I do not think he can still be in denial after all these years,” she says. “He just chooses to delay acknowledging that Mama could be ill again, and again the family will be going through exactly the same difficulties we go through every episode. Over and over again.”

Whatever his shortcomings in anticipating an episode, Ruby’s father has been a stable parent, someone they have all been able to rely on. He has never said or done anything that would show how devastated he is with what has happened to his wife, but they know it has cut deep. Yet when well-meaning friends had suggested that she be institutionalized, he had refused. “He loves her no end,” says Ruby.

It is in his work that her father finds solace, she says. “I cannot believe a man of his age can still work so much, and it’s worrisome,” she adds. But lately, perhaps because he thinks his children are already old enough, he talks to them about their mother and how she was before she got sick, even of how he thought they would not be able to endure it all during the early years. “But that’s all,” says Ruby. “He doesn’t really talk about it much.”

Talking to others who will understand is crucial, though. Balderama say it is vital for families with a member who has bipolar disorder to have the support of fellow caregivers. “It is important to know you are not alone,” she says. “That you are actually not that different, and it’s all right to have this because a lot of people do.”

Balderama says there are institutions such as St. Luke’s Medical Center, Makati Medical Center, and Medical City where patients with bipolar and other so-called mood disorders have formed groups. While informal, these support groups have helped not only the patients themselves, but also their caregivers. After all, as Ruby says, “It’s a disease that affects everyone around her.”

Fortunately, as the patient reaches the golden years, the episodes do get less intense, and Ruby says her mother’s behavior has gotten less offensive; the mania tames as time passes, and even the depression not as bad. The episodes come less frequently, too, and for shorter periods of time. Ruby says that in the past, each episode would last three months. Her mother would even go into what experts call “rapid cycling”: In one year, she would be manic for three months, depressed for one month, okay for three weeks, and then manic again. She would have three manic episodes in a year. Says Ruby: “You’d really go crazy yourself. We could not even tell how she would be the next morning.”

And, of course, her mother was younger and stronger then, and she would go out, making herself and those she encountered more vulnerable to harm.

But now that her mother isn’t young anymore, the stress of a manic episode can be too much for her body to endure. “What will happen next, physiologically?” wonders Ruby. “It scares me.”

Still, Ruby and the whole family are thankful for every little improvement in their mother’s condition, and they work hard to manage her illness wisely. They are all now familiar with the triggers — of which travel, and the stresses from their father’s job in politics, are the most frequent culprits (though Ruby concedes that even if her father’s work had been different, her mother’s illness would have still manifested.) They try to lessen those triggers. Balderama calls it “social manipulation”: If you know that something will likely trigger an episode, then deprive the patient of that stimulus.

As soon as Ruby sees a hint of a coming episode, she consults with her mother’s doctor and increases the medications. Then she warns her mother that an episode is about to occur. “Mostly, she cooperates,” she says. “(But) there are times she is stubborn.” Ruby is used to being the bad cop, though, and is firm with the rules.

She likens each episode to a train that neither she nor anyone else can stop. But Ruby has learned to forgive herself for those feelings of hatred that come all too often. “For a long time I was convinced I was evil for feeling that way,” she says. “But now I know I can detest her when she is detestable. It goes away.”

She knows, however, that the pain, like the illness, will always be there. “There was a time when I had thought that soon the hurting will subside, and I can crawl out of this hell,” says Ruby. “I know now that I will not. Maybe it’s like having a child — he is your child, for as long as he lives, and through all that will happen in his life. This is my mother. She is my mother and I love her, and her illness — which haunts me even in my dreams — will forever be a source of my pain.”