Caregivers for the mentally ill come in a combination of forms: paid, unpaid, central, incidental. So, you can be a paid worker and encoun...
Home / Archives for August 2011
Saturday, August 20, 2011
Thursday, August 18, 2011
Aging Parents Worry About Mentally Ill Sons & Daughters
For more than 25 years, Ned and Nancy Schaefer have worried about one of their sons, who suffers from schizophrenia. When their friends se...
Tuesday, August 16, 2011
You'll Not Steal My Son's Life!
For the past twenty-eight years I have been a mother. A full-time stay-at-home and care-for-the-children mother. That was my job and nothing...
Wednesday, August 10, 2011
Express to Paradise: A Mother's Story
Dedicated to the memory of my daughter Lisa O’Loughlin, who was known as "Freedom" to her family and friends. She took her own lif...
Saturday, August 6, 2011
Once the Son, Now the Father
Only a few weeks after my eleventh birthday my Dad began to ignore me. He changed from a loving, attentive father who couldn’t spend enough ...
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Saturday, August 20, 2011
Care for Caregivers
Caregivers for the mentally ill come in a combination of forms: paid, unpaid, central, incidental. So, you can be a paid worker and encounter a particular individual only incidentally, or you may be the primary caregiver. You can be a family member or friend who lives with the mentally ill person, or who only sees the person from time to time, or somewhere in between. The stresses for both paid and unpaid workers are similar in important ways, but also dissimilar in the safeguards that are built in for the caregiver. For all types of caregivers, consideration of several critical issues is important to both the caregiver and the person cared for.
How different are we from those we care for?
The normality-crazy continuum is just that, a continuum for more-or-less normal to more-or-less not so normal. We may "function" at higher levels in some areas of our lives and not in others. People may find us credible across areas of life because we are employed or have some other achievement. People who are mental health consumers struggle with being discredited even in areas of their lives where they "function" simply because they are seen as "crazy" and therefore generally incompetent. Thus undiagnosed people are given more credit than they may deserve, while diagnosed individuals may have to struggle to be credible on things that they know. The reality all along the continuum is that we can be a mix of abilities -- in some places quite functional, in others, not. When caring for others, we must remember that we have our less functional areas and our blind spots, and that those we care for need to have their areas of high functioning acknowledged. We must also remember that we have good days and not such good ones, and that when we are stressed our functioning is compromised -- not unlike those we care for.
Boundaries
Those of us who care for others have trouble setting limits on ourselves, or on those who depend on us. Caregivers sometimes think of this lack of boundaries as generous, but it is important to know that this kind of "generosity" can be infantilizing, too familiar, and not helpful. We need to know what we can do, what we want to do, and what is possible. And, it’s O.K. to share that information with those we care for. Boundaries help those we care for to recognize their own strengths, it teaches them to be realistic, and it helps us continue to be able to do our caregiving.
Respite
Caregivers need to take a break. Mental health workers need to take their vacations, leave the office at a reasonable time, and generally know their limitations. Family caregivers need to be "off duty" on a regular basis -- by finding substitute caregivers, and by assessing realistically whether the person in their care really cannot live without the caregiver. Without relief the caregiver begins to look, act, and feel like the person who is being cared for. Both workers and family members are likely to overestimate the mentally ill person’s need to be cared for by them; and underestimate the ability of others to provide adequate care.
Saving the Caregiver
Above all, caregivers must save themselves, and keep that as a fundamental rule. If you feel overextended, overwhelmed, and like you are not functioning the way you usually do, it is essential that you consider respite and boundary issues. While the person cared for may not need you exclusively, or as much as you may think, they probably still will suffer from our inability to continue to care, if adequate attention is not given to the the relationship between the caregiver and the person cared for.
How different are we from those we care for?
The normality-crazy continuum is just that, a continuum for more-or-less normal to more-or-less not so normal. We may "function" at higher levels in some areas of our lives and not in others. People may find us credible across areas of life because we are employed or have some other achievement. People who are mental health consumers struggle with being discredited even in areas of their lives where they "function" simply because they are seen as "crazy" and therefore generally incompetent. Thus undiagnosed people are given more credit than they may deserve, while diagnosed individuals may have to struggle to be credible on things that they know. The reality all along the continuum is that we can be a mix of abilities -- in some places quite functional, in others, not. When caring for others, we must remember that we have our less functional areas and our blind spots, and that those we care for need to have their areas of high functioning acknowledged. We must also remember that we have good days and not such good ones, and that when we are stressed our functioning is compromised -- not unlike those we care for.
Boundaries
Those of us who care for others have trouble setting limits on ourselves, or on those who depend on us. Caregivers sometimes think of this lack of boundaries as generous, but it is important to know that this kind of "generosity" can be infantilizing, too familiar, and not helpful. We need to know what we can do, what we want to do, and what is possible. And, it’s O.K. to share that information with those we care for. Boundaries help those we care for to recognize their own strengths, it teaches them to be realistic, and it helps us continue to be able to do our caregiving.
Respite
Caregivers need to take a break. Mental health workers need to take their vacations, leave the office at a reasonable time, and generally know their limitations. Family caregivers need to be "off duty" on a regular basis -- by finding substitute caregivers, and by assessing realistically whether the person in their care really cannot live without the caregiver. Without relief the caregiver begins to look, act, and feel like the person who is being cared for. Both workers and family members are likely to overestimate the mentally ill person’s need to be cared for by them; and underestimate the ability of others to provide adequate care.
Saving the Caregiver
Above all, caregivers must save themselves, and keep that as a fundamental rule. If you feel overextended, overwhelmed, and like you are not functioning the way you usually do, it is essential that you consider respite and boundary issues. While the person cared for may not need you exclusively, or as much as you may think, they probably still will suffer from our inability to continue to care, if adequate attention is not given to the the relationship between the caregiver and the person cared for.
Thursday, August 18, 2011
Aging Parents Worry About Mentally Ill Sons & Daughters
For more than 25 years, Ned and Nancy Schaefer have worried about one of their sons, who suffers from schizophrenia.
When their friends sent their children off to college, the Washington couple struggled to find a diagnosis and treatment for their son, who began showing symptoms of the disease in his late adolescence. While other parents celebrated at their children's weddings, the Schaefers took their son to psychiatrists and tried to get him to take the medication needed to treat his mental illness.
And while their friends enjoyed retirement, the Schaefers watched over their son and wondered: who will take care of him when we are no longer able to? He "isn't like my other children," Nancy Schaefer says. "He'll always be sick and need care."
Schaefer, 71, and her 74-year-old husband have learned to relinquish the dreams they once had for their 44-year-old son, a talented artist. For years, he had lived a nomadic existence -- holding a series of menial jobs, fighting alcoholism, going in and out of jail, and being admitted to and then expelled from group homes. After a long struggle, their son began receiving treatment. He is now a patient at a Maryland psychiatric hospital.
The Schaefers say their son is slowly showing signs of progress. He is sober and taking medication for his schizophrenia, a disease that is generally manifested through hallucinations, delusions and social withdrawal. But the Schaefers also realize they won't always be around to watch out for him, so they've provided for his care after their death.
They still worry about what life will be like for him when they die. Could he end up on the streets?
The Schaefers are not alone. Their worries are shared by a growing number of elderly parents caring for adult children who have schizophrenia, bipolar disorder (also called manic depression) and other severe mental illnesses.
A generation ago, mentally ill people were almost invisible -- many of them living out their lives in psychiatric hospitals. But in response to terrible conditions and civil liberties violations in those facilities, mental institutions began closing in the early 1970s. At that time, there were 337,619 mentally ill people living in state psychiatric hospitals. By 1992, only 101,000 of the mentally ill were institutionalized.
The money saved by closing the institutions was to have been redirected to outpatient psychiatric care, group homes and other services to mentally ill people in the community, says Laura Young, vice president of community services of the National Mental Health Association. Yet all too often these services weren't provided, she says, leaving many of the mentally ill without treatment. Often families were left to care for these patients.
Mental health advocates say there still aren't enough group homes or other supervised living situations and other mental health services for the mentally ill. They say that one-third of mentally ill people are homeless and others are estranged from their loved ones. About 40 percent live with their families or in housing provided and supervised by family members.
Barry D. Lebowitz, chief of adult and geriatric treatment and preventive interventions at the National Institute of Mental Health, says, "As a result of improvements in care to those with serious and persistent mental illness, these individuals ... now live into old age." But, he says, "most remain disabled. Some profoundly so. These individuals require a great deal of care."
Caring for mentally ill children is often devastating to families, says Carolyn Harwood, 76, who lives with her husband Jerry, 78, in a retirement community in Gaithersburg. Their daughter, now 44 and living in a group home in the District, was diagnosed with schizophrenia at age 16.
"She heard voices," Carolyn Harwood recalls. "The voices urged her to do terrible things. She picked up one of the dining room chairs and threw it at me. She'd wander the neighborhood at 2 in the morning."
The Harwoods cared for her at home until she was 32. But then the strain became too much. "When there's a mentally ill person in the family," Carolyn Harwood says, "the whole family gets sick."
The hope for the families of mentally ill people, Jerry Harwood says, "is that a mentally ill person can lead some kind of independent life and that their parents won't be overburdened by the care."
But this hope can't be fulfilled unless parents plan ahead for the future care of their mentally ill children, especially the tricky details of what happens when the parents are incapacitated or dead, warns Agnes Hatfield, a founder of the National Alliance for the Mentally Ill (NAMI). Many parents don't make those preparations.
"Some are anxious about the future of their mentally ill relative," Hatfield says. "This ... interferes with planning .... Others don't know how to go about it."
Gregory Smith, an associate professor of human development at the University of Maryland, added that many factors may keep parents from making other arrangements for their children. "Though difficult, caregiving can give meaning to the life of a parent," he says. "Some parents find it hard to face their own aging and mortality, [And] there's a dearth of options for residential placements."
The prohibitive cost of mental health care, advocates say, can also be daunting for parents thinking about the future. Inpatient care at a state hospital can run at a minimum $30,000, according to Clarke Ross, deputy executive director for public policy at NAMI. Other mental health experts say the figure can be three or four times that high. But most mentally ill patients don't stay in a hospital that long. Even so, outpatient treatment is very expensive. It costs about $25,000 a year to provide services, such as housing, transportation and psychiatric rehabilitation, and the medications for a mentally ill patient living in the community, he adds. Some mentally ill people are eligible for Medicaid or Medicare, but negotiating these programs can be difficult.
Parents often think other children will take care of their mentally ill child if they become incapacitated or die, Hatfield says. But, she adds, "this often isn't the case. Some siblings don't want to get involved. Others can't assume this responsibility because they live in a different state."
The Schaefers pay Planned Lifetime Assistance Network of Maryland-DC (PLAN) to monitor treatment and coordinate social services for their son and to manage the disability benefits he receives from Social Security.
PLAN charges a $100 annual membership fee and then families pay $65 an hour for services, according to officials. It doesn't accept payment through Medicaid, Medicare or private insurance.
When the Schaefers die, PLAN will continue to provide these services for their son. The parents have set up a trust fund to provide for his needs after their death.
Last September, the Maryland affiliate of NAMI began a three-year series of workshops to help parents overcome their fears of dealing with these issues and begin planning for the future. The effort, one of only a few in the country to address this issue, is funded by the Maryland Mental Hygiene Administration.
"We talk to parents about community mental health services and what they should do to prepare their mentally ill child for the fact that they won't always be there," Hatfield says.
Planning for the care of adult mentally ill children is difficult, Hatfield says. "It involves talking with your mentally ill child, with his or her siblings and with mental health service providers," she explains. "You need to know how to provide for the financial needs of your mentally ill relative -- who usually won't be able to manage money."
Ken Steele, 51, who was diagnosed with schizophrenia when he was 14 years old, applauds this effort. With the help of medications (Risperdal) and therapy, he lives independently in a New York City apartment. Steele, who publishes New York City Voices: A Consumer Journal for Mental Health Advocacy, says, "Consumers with mental illness watch their parents become old and frail. They're terrified about who will care for them when their parents aren't there. They're afraid they might get stuck in a nursing home or land on the streets."
Resources
* For information on Agnes Hatfield's workshops, call the Maryland affiliate of the National Alliance for the Mentally Ill at 410-467-7100.
* Planned Lifetime Assistance Network of Maryland-DC (PLAN) provides social work services for people with mental illness and other disabilities, 301-587-7815.
* The Family Education Institute of the Community Residences Foundation in Arlington helps parents plan the future care of their mentally retarded or mentally ill children. The foundation also provides services ranging from group homes to case management. In some cases, it accepts Medicaid or private insurance. 703-841-7768, ext. 247.
When their friends sent their children off to college, the Washington couple struggled to find a diagnosis and treatment for their son, who began showing symptoms of the disease in his late adolescence. While other parents celebrated at their children's weddings, the Schaefers took their son to psychiatrists and tried to get him to take the medication needed to treat his mental illness.
And while their friends enjoyed retirement, the Schaefers watched over their son and wondered: who will take care of him when we are no longer able to? He "isn't like my other children," Nancy Schaefer says. "He'll always be sick and need care."
Schaefer, 71, and her 74-year-old husband have learned to relinquish the dreams they once had for their 44-year-old son, a talented artist. For years, he had lived a nomadic existence -- holding a series of menial jobs, fighting alcoholism, going in and out of jail, and being admitted to and then expelled from group homes. After a long struggle, their son began receiving treatment. He is now a patient at a Maryland psychiatric hospital.
The Schaefers say their son is slowly showing signs of progress. He is sober and taking medication for his schizophrenia, a disease that is generally manifested through hallucinations, delusions and social withdrawal. But the Schaefers also realize they won't always be around to watch out for him, so they've provided for his care after their death.
They still worry about what life will be like for him when they die. Could he end up on the streets?
The Schaefers are not alone. Their worries are shared by a growing number of elderly parents caring for adult children who have schizophrenia, bipolar disorder (also called manic depression) and other severe mental illnesses.
A generation ago, mentally ill people were almost invisible -- many of them living out their lives in psychiatric hospitals. But in response to terrible conditions and civil liberties violations in those facilities, mental institutions began closing in the early 1970s. At that time, there were 337,619 mentally ill people living in state psychiatric hospitals. By 1992, only 101,000 of the mentally ill were institutionalized.
The money saved by closing the institutions was to have been redirected to outpatient psychiatric care, group homes and other services to mentally ill people in the community, says Laura Young, vice president of community services of the National Mental Health Association. Yet all too often these services weren't provided, she says, leaving many of the mentally ill without treatment. Often families were left to care for these patients.
Mental health advocates say there still aren't enough group homes or other supervised living situations and other mental health services for the mentally ill. They say that one-third of mentally ill people are homeless and others are estranged from their loved ones. About 40 percent live with their families or in housing provided and supervised by family members.
Barry D. Lebowitz, chief of adult and geriatric treatment and preventive interventions at the National Institute of Mental Health, says, "As a result of improvements in care to those with serious and persistent mental illness, these individuals ... now live into old age." But, he says, "most remain disabled. Some profoundly so. These individuals require a great deal of care."
Caring for mentally ill children is often devastating to families, says Carolyn Harwood, 76, who lives with her husband Jerry, 78, in a retirement community in Gaithersburg. Their daughter, now 44 and living in a group home in the District, was diagnosed with schizophrenia at age 16.
"She heard voices," Carolyn Harwood recalls. "The voices urged her to do terrible things. She picked up one of the dining room chairs and threw it at me. She'd wander the neighborhood at 2 in the morning."
The Harwoods cared for her at home until she was 32. But then the strain became too much. "When there's a mentally ill person in the family," Carolyn Harwood says, "the whole family gets sick."
The hope for the families of mentally ill people, Jerry Harwood says, "is that a mentally ill person can lead some kind of independent life and that their parents won't be overburdened by the care."
But this hope can't be fulfilled unless parents plan ahead for the future care of their mentally ill children, especially the tricky details of what happens when the parents are incapacitated or dead, warns Agnes Hatfield, a founder of the National Alliance for the Mentally Ill (NAMI). Many parents don't make those preparations.
"Some are anxious about the future of their mentally ill relative," Hatfield says. "This ... interferes with planning .... Others don't know how to go about it."
Gregory Smith, an associate professor of human development at the University of Maryland, added that many factors may keep parents from making other arrangements for their children. "Though difficult, caregiving can give meaning to the life of a parent," he says. "Some parents find it hard to face their own aging and mortality, [And] there's a dearth of options for residential placements."
The prohibitive cost of mental health care, advocates say, can also be daunting for parents thinking about the future. Inpatient care at a state hospital can run at a minimum $30,000, according to Clarke Ross, deputy executive director for public policy at NAMI. Other mental health experts say the figure can be three or four times that high. But most mentally ill patients don't stay in a hospital that long. Even so, outpatient treatment is very expensive. It costs about $25,000 a year to provide services, such as housing, transportation and psychiatric rehabilitation, and the medications for a mentally ill patient living in the community, he adds. Some mentally ill people are eligible for Medicaid or Medicare, but negotiating these programs can be difficult.
Parents often think other children will take care of their mentally ill child if they become incapacitated or die, Hatfield says. But, she adds, "this often isn't the case. Some siblings don't want to get involved. Others can't assume this responsibility because they live in a different state."
The Schaefers pay Planned Lifetime Assistance Network of Maryland-DC (PLAN) to monitor treatment and coordinate social services for their son and to manage the disability benefits he receives from Social Security.
PLAN charges a $100 annual membership fee and then families pay $65 an hour for services, according to officials. It doesn't accept payment through Medicaid, Medicare or private insurance.
When the Schaefers die, PLAN will continue to provide these services for their son. The parents have set up a trust fund to provide for his needs after their death.
Last September, the Maryland affiliate of NAMI began a three-year series of workshops to help parents overcome their fears of dealing with these issues and begin planning for the future. The effort, one of only a few in the country to address this issue, is funded by the Maryland Mental Hygiene Administration.
"We talk to parents about community mental health services and what they should do to prepare their mentally ill child for the fact that they won't always be there," Hatfield says.
Planning for the care of adult mentally ill children is difficult, Hatfield says. "It involves talking with your mentally ill child, with his or her siblings and with mental health service providers," she explains. "You need to know how to provide for the financial needs of your mentally ill relative -- who usually won't be able to manage money."
Ken Steele, 51, who was diagnosed with schizophrenia when he was 14 years old, applauds this effort. With the help of medications (Risperdal) and therapy, he lives independently in a New York City apartment. Steele, who publishes New York City Voices: A Consumer Journal for Mental Health Advocacy, says, "Consumers with mental illness watch their parents become old and frail. They're terrified about who will care for them when their parents aren't there. They're afraid they might get stuck in a nursing home or land on the streets."
Resources
* For information on Agnes Hatfield's workshops, call the Maryland affiliate of the National Alliance for the Mentally Ill at 410-467-7100.
* Planned Lifetime Assistance Network of Maryland-DC (PLAN) provides social work services for people with mental illness and other disabilities, 301-587-7815.
* The Family Education Institute of the Community Residences Foundation in Arlington helps parents plan the future care of their mentally retarded or mentally ill children. The foundation also provides services ranging from group homes to case management. In some cases, it accepts Medicaid or private insurance. 703-841-7768, ext. 247.
Tuesday, August 16, 2011
You'll Not Steal My Son's Life!
For the past twenty-eight years I have been a mother. A full-time stay-at-home and care-for-the-children mother. That was my job and nothing in my past had prepared me to write an article in any newspaper much less a consumer journal for mental health advocacy -- until one year ago. We came to learn that our youngest son, then a twenty-one year old college student, has schizophrenia; a serious mental illness. Our son, his siblings, grandparents, aunt, uncles, cousins, nieces, nephews and friends have been taken to a "foreign land." One we didn’t choose to visit and frankly, a language and culture we don’t want to learn. But learn we must because our son’s future (indeed, all our futures) are dependent on our mastering this foreign place.
None of us had been on the psychiatric floor of a hospital. Speaking as a parent, no training can prepare you for this shocker. Most parents spend the greater part of our children’s lives protecting them from the minor cuts and scrapes in life. So to be hit with this most serious of illnesses is very jolting. Navigating the medical and hospital world (especially now in the era of managed care) is not easy. I imagine it’s like getting troops "combat ready."
Our son’s first hospitalization panicked him and us and left us confused and terrified as to the future. While we felt he was safe and being treated during his hospitalization, we would soon come to learn that unlike many illnesses and diseases, schizophrenia has NO CURE. Recovery is a long road and so dependent on first finding the correct medication and dosage and then faithfully taking this medication in conjunction with therapy.
After thirty days as an inpatient, our son was released from the hospital and along with his prescriptions for antipsychotic medication and cogentin (to combat the side effects of these meds), he was instructed to attend a daily outpatient day treatment program. He went for a couple of days but then decided this day treatment wasn’t for him. For a while he kept taking his meds and seeing a therapist biweekly. He even held down a full-time job as a dishwasher in a local restaurant but after a time, he discontinued taking his medications (the side effects were many and besides, he felt "there isn’t anything wrong with me, I’m not sick"). We would learn that these reactions are common and it wasn’t long before he also stopped seeing his therapist.
Our son’s world would continue to unravel and he would eventually return to his psychotic state within three months necessitating another involuntary hospitalization. This time we were a little more prepared. We were fortunate to have learned of a hospital in Connecticut specializing in the treatment of psychiatric illnesses. With the aid of our local police -- we had to call the police to first take our son by ambulance to the county hospital and from there he was transferred by ambulance to the hospital in Connecticut.
Our guidance and direction for this second hospitalization -- the one that has put our son on his road to recovery -- came from a family friend; himself a recovering schizophrenic. We had been on the telephone to him three and four times a day in the weeks preceding our son’s second hospitalization. He would be our sounding board, our greatest source of strength and courage and, ultimately, our son’s savior. Through his daily assessment, he would identify the behaviors and isolation our son was exhibiting and he could counsel us as to what direction we should be taking in order to get the best help for our son. Because our friend was well into his recovery (his recovery began when he was put on Risperdal four years ago) and because he had also helped other people with serious mental illness, he knew when our son would need to be rehospitalized. He was further able to suggest a psychiatrist who might be able to "connect" with our son after his inpatient stay.
Because our friend intervened and we followed his suggestions, which have worked out well, I am able to write and say during these past six months, our son has been learning to manage his illness. Together with a psychiatrist he sees weekly and the benefit of daily medication, we are optimistic that one day our son will be able to offer a point in the right direction to someone not yet on their road to recovery. We all need to help and support each other -- share information as to what works, where to go for help and care about each other. If we do this, one day all people living with serious mental illness will be helped to live a life worth living.
None of us had been on the psychiatric floor of a hospital. Speaking as a parent, no training can prepare you for this shocker. Most parents spend the greater part of our children’s lives protecting them from the minor cuts and scrapes in life. So to be hit with this most serious of illnesses is very jolting. Navigating the medical and hospital world (especially now in the era of managed care) is not easy. I imagine it’s like getting troops "combat ready."
Our son’s first hospitalization panicked him and us and left us confused and terrified as to the future. While we felt he was safe and being treated during his hospitalization, we would soon come to learn that unlike many illnesses and diseases, schizophrenia has NO CURE. Recovery is a long road and so dependent on first finding the correct medication and dosage and then faithfully taking this medication in conjunction with therapy.
After thirty days as an inpatient, our son was released from the hospital and along with his prescriptions for antipsychotic medication and cogentin (to combat the side effects of these meds), he was instructed to attend a daily outpatient day treatment program. He went for a couple of days but then decided this day treatment wasn’t for him. For a while he kept taking his meds and seeing a therapist biweekly. He even held down a full-time job as a dishwasher in a local restaurant but after a time, he discontinued taking his medications (the side effects were many and besides, he felt "there isn’t anything wrong with me, I’m not sick"). We would learn that these reactions are common and it wasn’t long before he also stopped seeing his therapist.
Our son’s world would continue to unravel and he would eventually return to his psychotic state within three months necessitating another involuntary hospitalization. This time we were a little more prepared. We were fortunate to have learned of a hospital in Connecticut specializing in the treatment of psychiatric illnesses. With the aid of our local police -- we had to call the police to first take our son by ambulance to the county hospital and from there he was transferred by ambulance to the hospital in Connecticut.
Our guidance and direction for this second hospitalization -- the one that has put our son on his road to recovery -- came from a family friend; himself a recovering schizophrenic. We had been on the telephone to him three and four times a day in the weeks preceding our son’s second hospitalization. He would be our sounding board, our greatest source of strength and courage and, ultimately, our son’s savior. Through his daily assessment, he would identify the behaviors and isolation our son was exhibiting and he could counsel us as to what direction we should be taking in order to get the best help for our son. Because our friend was well into his recovery (his recovery began when he was put on Risperdal four years ago) and because he had also helped other people with serious mental illness, he knew when our son would need to be rehospitalized. He was further able to suggest a psychiatrist who might be able to "connect" with our son after his inpatient stay.
Because our friend intervened and we followed his suggestions, which have worked out well, I am able to write and say during these past six months, our son has been learning to manage his illness. Together with a psychiatrist he sees weekly and the benefit of daily medication, we are optimistic that one day our son will be able to offer a point in the right direction to someone not yet on their road to recovery. We all need to help and support each other -- share information as to what works, where to go for help and care about each other. If we do this, one day all people living with serious mental illness will be helped to live a life worth living.
Wednesday, August 10, 2011
Express to Paradise: A Mother's Story
Dedicated to the memory of my daughter Lisa O’Loughlin, who was known as "Freedom" to her family and friends. She took her own life on October 26, 1987.
"What a waste! She was only nineteen, beautiful and intelligent!" A young man exclaimed these words at my daughter Lisa’s wake eleven years ago. I’ll never forget his remark.
She was diagnosed manic-depressive and schizophrenic at the tender teen age of sixteen. One day in 1984, clad in only a white sheet, she claimed to be "the second coming of Christ" to her brother Chris. Alarmed, he quickly told me - so we took her across the street to North Central Bronx Hospital Emergency (Psych) Room.
Lisa’s diagnosis occurred several admissions later in a Long Island hospital. She went to six hospitals at least (Beth Israel, Bronx State Psychiatric Center, Westchester County Medical Center) and ultimately to Harlem Valley State Psychiatric Center in Wingdale, N.Y. My daughter was transferred there because I had just remarried and I wanted her to be geographically closer to me and my husband; we lived in Bedford Hills.
Besides Lisa, my youngest, I have two sons, ages 33 and 39. They are both on speaking terms with their father since our divorce. Alcoholism was on his side of the family and mental illness on my mother’s side!
Lisa, it was revealed later in our family group therapy sessions at Bronx State, took various harmful street drugs with her girlfriend and boyfriend and found out they did trigger off her condition. I noticed some drastic changes in her bubbly personality after age fifteen. Lisa had done modeling for a year and had a blast doing it! I, thank God, I have many photographs and slides from her fabulous escapade!
Drugs! Lisa, in the end, wanted to be "drug-free" we surmised. In order to function somewhat "normal-like" she had to take and stay on her prescribed psychotropic drugs that were given to her at the hospital.
Eleven years ago drugs like Risperdal (risperidone), Zyprexa (olanzipine) and other new atypical antipsychotic drugs were non-existent. She had significant side effects for which she was given Cogentin, but her sick mind let her act strangely "different." At this point, her doctor, social worker and family advocate were to meet with her dad and me to evaluate Lisa and her medication!
Each day the patients would be bussed to a nearby town to a site like PsychSystems for group therapy, etc. That particular day, October 26, 1987, Lisa was to remain behind at the hospital for the evaluation meeting. She, however, went on the bus without any "worker" stopping her as per ordered. She went down to the town of Mount Kisco, left there, then boarded the "Metro Line" to White Plains, N.Y., where she visited an ex-patient friend.
Keep in mind now, my daughter had had no psychiatric medications for several weeks. She must have thrown them down the toilet when no one was looking. Lisa was hearing voices and hallucinating through all this. When she had left her friend, she went back to the White Plains station, where witnesses said she was "screaming, swerving and veering" on the platform. When an express train going north came through the station, Lisa vaulted in front of it, to her death! Those dreaded voices urged her to leave this earth and her miserable existence!
Had she stayed on the drugs given her for eight more years, in a guarded setting, whether it was at home, in the hospital or at a half-way house, Lisa would have been around to take one of the wonderful new atypical drugs for schizophrenia!
You must stay on these drugs, always, whether you feel good, bad or indifferent. I can’t stress this enough. To stop taking these drugs for any "good" reason is a bad move. We have come such a long way since my daughter’s suicide, eleven years ago. She would be here today if such a drug existed then. Lisa would be a productive human being like so many other individuals with schizophrenia who are reaching out and helping others like her.
Suicide can be prevented. We now have the resources and wonderful support groups and people to help every step of the way. Lisa’s death was not in vain and was not a "waste." If good can come out of it—helping others with mental illness—we can all learn form this horrible experience!
"What a waste! She was only nineteen, beautiful and intelligent!" A young man exclaimed these words at my daughter Lisa’s wake eleven years ago. I’ll never forget his remark.
She was diagnosed manic-depressive and schizophrenic at the tender teen age of sixteen. One day in 1984, clad in only a white sheet, she claimed to be "the second coming of Christ" to her brother Chris. Alarmed, he quickly told me - so we took her across the street to North Central Bronx Hospital Emergency (Psych) Room.
Lisa’s diagnosis occurred several admissions later in a Long Island hospital. She went to six hospitals at least (Beth Israel, Bronx State Psychiatric Center, Westchester County Medical Center) and ultimately to Harlem Valley State Psychiatric Center in Wingdale, N.Y. My daughter was transferred there because I had just remarried and I wanted her to be geographically closer to me and my husband; we lived in Bedford Hills.
Besides Lisa, my youngest, I have two sons, ages 33 and 39. They are both on speaking terms with their father since our divorce. Alcoholism was on his side of the family and mental illness on my mother’s side!
Lisa, it was revealed later in our family group therapy sessions at Bronx State, took various harmful street drugs with her girlfriend and boyfriend and found out they did trigger off her condition. I noticed some drastic changes in her bubbly personality after age fifteen. Lisa had done modeling for a year and had a blast doing it! I, thank God, I have many photographs and slides from her fabulous escapade!
Drugs! Lisa, in the end, wanted to be "drug-free" we surmised. In order to function somewhat "normal-like" she had to take and stay on her prescribed psychotropic drugs that were given to her at the hospital.
Eleven years ago drugs like Risperdal (risperidone), Zyprexa (olanzipine) and other new atypical antipsychotic drugs were non-existent. She had significant side effects for which she was given Cogentin, but her sick mind let her act strangely "different." At this point, her doctor, social worker and family advocate were to meet with her dad and me to evaluate Lisa and her medication!
Each day the patients would be bussed to a nearby town to a site like PsychSystems for group therapy, etc. That particular day, October 26, 1987, Lisa was to remain behind at the hospital for the evaluation meeting. She, however, went on the bus without any "worker" stopping her as per ordered. She went down to the town of Mount Kisco, left there, then boarded the "Metro Line" to White Plains, N.Y., where she visited an ex-patient friend.
Keep in mind now, my daughter had had no psychiatric medications for several weeks. She must have thrown them down the toilet when no one was looking. Lisa was hearing voices and hallucinating through all this. When she had left her friend, she went back to the White Plains station, where witnesses said she was "screaming, swerving and veering" on the platform. When an express train going north came through the station, Lisa vaulted in front of it, to her death! Those dreaded voices urged her to leave this earth and her miserable existence!
Had she stayed on the drugs given her for eight more years, in a guarded setting, whether it was at home, in the hospital or at a half-way house, Lisa would have been around to take one of the wonderful new atypical drugs for schizophrenia!
You must stay on these drugs, always, whether you feel good, bad or indifferent. I can’t stress this enough. To stop taking these drugs for any "good" reason is a bad move. We have come such a long way since my daughter’s suicide, eleven years ago. She would be here today if such a drug existed then. Lisa would be a productive human being like so many other individuals with schizophrenia who are reaching out and helping others like her.
Suicide can be prevented. We now have the resources and wonderful support groups and people to help every step of the way. Lisa’s death was not in vain and was not a "waste." If good can come out of it—helping others with mental illness—we can all learn form this horrible experience!
Saturday, August 6, 2011
Once the Son, Now the Father
Only a few weeks after my eleventh birthday my Dad began to ignore me. He changed from a loving, attentive father who couldn’t spend enough time with me to a distant person who stopped being a part of our family’s life. My Dad used to take me to the park everyday, sometimes even in the coldest winter months, to play baseball with me. Now my Dad ignored everyone in the family. He isolated himself in his bedroom. Mom said, "Your Dad is sad. Be patient. He loves you very much."
My Dad had a smile as broad and warm as any I’ve ever known. He liked funny jokes, and he laughed, and loved to make us laugh. But that was before Dad became sad. Then he talked only late at night in his room. It happened almost every night, and the talk became louder and louder until the noise would wake everyone in our home.
Dad had a medical disease I would later learn. He had a disease with a long sounding name I could not pronounce at the time—schizophrenia. Dad spent several months in a hospital where Mom said children were simply not allowed to visit. He was in a state mental hospital.
Dad was in a hospital many miles away until I was fourteen, and then one day my Mom told us Dad had died. I wouldn’t learn until I was twenty that my Dad had committed suicide. He hanged himself in the hospital. The doctors said he heard voices in his head that told him to do it. My Dad was a "paranoid schizophrenic."
Now I am 39 years old with five children of my own. All of them are in good health except my oldest, Eric, Jr. Like my father, he has schizophrenia. Unlike in my father’s day, however, we know so much more about schizophrenia today. Eric just started on Risperdal; one of the new medications for schizophrenia which has helped others. He isn’t locked away in a hospital, but lives in an apartment with a roommate and is working part-time in a retail store.
Things could easily be different, even today. Public awareness hasn’t come very far. It is a good thing science and medicine do not depend on the general public consciousness, or lack of it. Too many still believe schizophrenia is caused by poor parenting or weak will power, instead of brain dysfunction.
Once the son and now the father, I cannot let what happened to my father happen to my son. Today I have a choice.
My Dad had a smile as broad and warm as any I’ve ever known. He liked funny jokes, and he laughed, and loved to make us laugh. But that was before Dad became sad. Then he talked only late at night in his room. It happened almost every night, and the talk became louder and louder until the noise would wake everyone in our home.
Dad had a medical disease I would later learn. He had a disease with a long sounding name I could not pronounce at the time—schizophrenia. Dad spent several months in a hospital where Mom said children were simply not allowed to visit. He was in a state mental hospital.
Dad was in a hospital many miles away until I was fourteen, and then one day my Mom told us Dad had died. I wouldn’t learn until I was twenty that my Dad had committed suicide. He hanged himself in the hospital. The doctors said he heard voices in his head that told him to do it. My Dad was a "paranoid schizophrenic."
Now I am 39 years old with five children of my own. All of them are in good health except my oldest, Eric, Jr. Like my father, he has schizophrenia. Unlike in my father’s day, however, we know so much more about schizophrenia today. Eric just started on Risperdal; one of the new medications for schizophrenia which has helped others. He isn’t locked away in a hospital, but lives in an apartment with a roommate and is working part-time in a retail store.
Things could easily be different, even today. Public awareness hasn’t come very far. It is a good thing science and medicine do not depend on the general public consciousness, or lack of it. Too many still believe schizophrenia is caused by poor parenting or weak will power, instead of brain dysfunction.
Once the son and now the father, I cannot let what happened to my father happen to my son. Today I have a choice.
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