This is an excerpt taken from an anonymous blog post at http://www.rageagainsttheminivan.com.
“Having a mental illness is a lot like having a physical illness. One of the main differences to me is, since you can’t see the injury, you might think that it is easier to overcome. If someone is missing a leg you would not expect them to jump over a hurdle easily, you would not expect a person who is deaf to focus just a little harder so that they can hear you. It’s seems like it is the same way for people who are born with or develop a mental illness. It can be frustrating to live with someone, especially when they don’t take medicine that can help them cope, but even on the best days, with the right cocktail of meds, life can be paralyzing and incredibly difficult for not only them, but the people around them.”
Excerpt taken from the site www.thefamilycaregiver.com.
“Toiling away in silence in countless countries of the world is a veritable army of youngsters who quietly, without any fanfare, look after family members who need assistance on a daily basis. It is a labor born out of familial love, commitment and need. These youngsters – family caregivers in a very real sense – are known as ‘young carers’ in Britain, Australia, New Zealand, Canada, Zambia and various other countries. In the USA they are called ‘caregiving youth’ or ‘youth caregivers.’ But no matter what the label, or the country, research from around the world has shown these young people comprise a specific population with a unique set of needs.”
MUCH TOO YOUNG, is a feature-length documentary about young caregivers all dealing with a parent who has been diagnosed with early onset Alzheimer’s disease. This film will follow each of them as they cope with their life at home, caring for an ailing parent. They are all coming to terms with the fact that they are Much Too Young to face this harsh reality.
Taking care of an elderly parent is something that every child knows they will have to do at some point. But not everyone anticipates becoming a caregiver for a parent before they have a family, career or life of their own. Most twenty-somethings are in the early stages of their careers, dating and struggling to shape their identity in the real world. Traditionally, this is a period when young people are still tied to home because they rely on their parents for advice and money. Today, more and more young adults are moving back home to help care for a parent. They have to put their own lives on hold in order to help out at home. Alzheimer’s disease is more prevalent now than ever, and is starting to affect people in their fifties. Many of these families have kids in their twenties, who are taking on significant responsibilities as young caregivers.
. . . a window into a world often invisible to others.
From video interviews of real experiences, gain insights, understanding…as people share their stories.
“Dr. William Beardslee presents on the increasingly strong evidence base for mental health promotion and prevention for children, youth and families. He emphasizes the importance of a developmental perspective by using different kinds of interventions across the span of childhood. Dr. Beardslee’s presentation discusses the benefits of a system with fully implemented mental health preventions. He focuses specifically on parental depression and after briefly reviewing what is known about its costs and prevalence, he discusses a variety of preventive interventions that offer considerable promise. In terms of adolescents and adults, cognitive-behavioral approaches have demonstrated that it is actually possible to prevent episodes of major depression including youngsters at high risk because their parents are depressed. He advocates the potential of a prevention model in Canada.”
By Maggie Jarry
Maggie is co-founder of the Daughters and Sons Initiative (for Daughters and Sons who have a parent with mental illness) and is completing a Master of Divinity at Union Theological Seminary in the City of New York.
In 2001 my mom was arrested and held in jail because she was hearing voices and walking around a neighborhood. In her memory of the events she said she was begging for coffee and that police kicked her. Once she was at the jail she urinated on herself and then was placed in solitary confinement. I was living abroad at the time. Calling long distance throughout the middle of several nights I was able to come up with a plan that my brother and I worked together to make happen. I called my mom’s mental health provider, but they did not respond and they did not communicate information to the people who were supposed to help my mom on a daily basis. When I finally spoke with my mom’s mental health provider she said this was so common and that most of the time they did not know for several months, sometimes up to a half a year or a year, that their clients were being held in the jail system without charges. There was a complacency in the mental health provider. Our mom’s provider actually never worked to support my brother and I or our mom in this situation. Had our mom not had regular contact with us, she would have been held for at least months. The jail said they could not identify that our mom had a mental illness, even though she was clearly psychotic, until a mental health professional came to do an assessment, which would be at least a week to a month. This was despite the fact that our mom had been in state mental health systems in Arizona since 1983. We finally got our mom to a hospital where she stayed for 39 days.
In 2003 I flew to Arizona because my mom had been taken to a hospital. When I arrived her arm was bruised and purple. I was not allowed to bring items into her, such as a small satchel of lavender, because people in that hospital (Kino) were treated as prisoners. While visiting my mom she said that the abuse within the hospital was severe. She said, “Watch, if I get up and start sweeping they will ask you to leave.” She did stand up, start sweeping and I was asked to leave. When I asked doctors why my mom’s arm was purple they were unaware and said they would look into it. They later reported to me that her arm was purple because she had a heart attack on the ward and when she was brought to another part of the hospital a combination of things happened – she had taken an IV out of her arm and then was held down by several men to receive medical treatment. My mom had already reported to me about past events where she had been held down by 8 men to be forcibly medicated. As a child I vividly remember coming home to find that my mom had been arrested in front of our house because she was hearing voices (leading children in the neighborhood to believe that my mom had attempted suicide). In this particular instance, in 2003, I sat in the mental health court to advocate that my mom be given supportive housing. In the courtroom a psychiatrist on staff testified that if my mother was released she would be more likely to die because of likelihood that she would be a victim of violence. We never got her to supportive housing because her provider believed that my mom would be upset that she would not have as much freedom to smoke if she moved. (She and her provider smoked together as a form of bonding.) My advocacy efforts failed, aside from getting my mom to a better hospital.
Being held in solitary confinement was part of my mom’s life experiences from the 1970s until her death in 2007. She was so severely traumatized by her experiences, most often of being arrested to be brought to hospitals and then later to jail, that by the end of her life she told me that if she ever heard voices again she would commit suicide, not because she was afraid of the voices, but because she was afraid of the abuse she would suffer in hospitals and jails.
When I think about Sandy Hook today and the many people rising up against racism and police profiling, I cannot forget my mother. Let us be careful as advocates not to detract from the core issue of racism that has led to deaths of people of color, men and women…not only Michael Brown and Eric Garner and Tamir Rice. African American people have been living this their whole lives and it doesn’t go away overnight. In conversations I have had with white friends I have been truly shocked at the lack of awareness that people have had regarding what it means to LIVE with constant fear that you or a loved one will be killed by police. I have been truly shocked. I have also been shocked by lack of awareness regarding experiences of racism of people of color. I have been mindful that my experiences are not the same. Despite the deep pain that I feel, the grief, the feeling that I have that it is this dehumanizing system that killed my mother, I am not experiencing racial profiling. Even in my experience of being arrested last week as part of protests against racial profiling and police violence, I was given privilege and I came from a place of privilege.
The solidarity of people across the United States that has emerged over the past few weeks seems like a miracle to me. It seems like a miracle because what is being reported in the news is not new. Why now? In this I feel it is the young people who are the reason. They understand this better and they understand the insanity of this system. I feel great hope for our country in these weeks in ways that I have not felt for a long time. At the same time, let us remember not to create new profiling systems to help us feel better about ourselves. People who commit massacres are often white, often male and, while mental illness may be a component in some cases, the vast majority of people experiencing mental illness are more likely to be victims of violence on an annual basis than they are to be perpetrators of even the most basic of crimes. In fact, the biggest crime that people with mental illness commit on average would likely be being homeless. For all of these reasons, those of us who are positively profiled, those of us who are seen as “not a threat” “not a thug” “not a real crazy” … we need to take a good look at ourselves in the mirror and consider how we are the system.
Dr. Brenda Gladstone, Research Scientist at the Hospital for Sick Children (SickKids), discusses Children of Parents with Mental Illness and their needs in this article that was posted on February 18, 2013.