Turning Heartache into Hope

BY KIMBERLY BROUILLETTE

One of the saddest losses anyone can face is that of a child. Unfortunately, I understand this all too well. It’s hard to believe that it’s been over a year and a half since I lost my youngest daughter, Kelsey Rose, due to suicide on October 28, 2018. As many of you may recall from the May 2019 issue of Cabarrus Magazine, she took her life 3 days before her nineteenth birthday following a 4 ½ year battle with paranoid schizophrenia. There isn’t a day that goes by which I don’t mourn her.

Though this has been one of the worst tragedies of my life, I have found some reconciliation in knowing that she is no longer tormented by the voices and delusions that plagued her mind. Yes, I wish she was still here, but I know that her daily life was challenging and horrific beyond anything I can comprehend. Simply put, she had been living in a nightmare every day for three to four years.

Unfortunately, I cannot change the past, and it is doubtful I could’ve done anything to alter the eventual outcome. Yet, through my grief, I have found a new purpose and calling to help those who might find themselves in similar circumstances.

I began to think of the larger picture and looked back through the various situations we encountered while Kelsey was so sick. I was able to recognize aspects of her mental care that did not seem to benefit her. Since I wasn’t in the midst of the daily battle to stabilize her fragile mind, I could review our past circumstances and determine areas that could’ve been improved. I also read many articles and books focused on mental illness, specifically on more severe diagnoses.

Although I am not a doctor or therapist, I am a parent who recognized the many things my daughter faced on a daily basis. As a result, I came up with several areas that I felt were sadly lacking in mental healthcare, but also possible solutions that could “fix,” and/or improve, those areas. I spoke with other parents of mentallyill children, as well as doctors and mental health (MH) advocacy leaders about my ideas, and was encouraged by their positive responses and similar experiences. It was suggested that I write a proposal for community leaders and elected officials in order to give a “voice” to my ideas. Out of this came “Operation Green Flag,” a 16-page proposal that I presented to Congressman Richard Hudson’s chief of staff, Chris Carter, and several other local leadership officials.

In it, I outlined several gaps in the healthcare system with other related areas that often work autonomously from each other regarding MH. These include not only the MH facilities and doctors, but also law enforcement, judicial system, educational system and MH advocacy organizations. Although there are some areas that have gotten better over the past decade, significant improvements are still needed in order to help the millions of suffering people.

When Kelsey initially went to the emergency MH facility, we were in the waiting room for over 10 hours before she was seen. Her father and I were told that she could be moved to other facilities as far away as Raleigh, Wilmington or Asheville, if a bed did not become available soon. It took nearly 7 additional hours for her to be assigned a bed, and she remained in their care for 10 days. Had she been transported to another facility, it would’ve complicated our situation immensely, since traveling would involve at least a 2 ½ hour one-way trip. This is evidence of one of the most significant problems that needs immediate attention — there is very limited access to in-house mental healthcare in North Carolina, especially for juveniles.

I began to think of the larger picture and looked back through the various situations we encountered while Kelsey was so sick. I was able to recognize aspects of her mental care that did not seem to benefit her.

Throughout the entire state of North Carolina, there are only 121 MH facilities, according to Ismael Carrasquillo, president of NAMICabarrus. In those facilities, there are a total of less than 2000 beds available for MH care, and 1032 for substance abuse and rehabilitation. Out of those, there are only about 3 to 7 beds total available at any given time for juveniles, statewide, according to Gwen Bartley, founder and executive director of Amazing Grace Advocacy in Concord.

Here are some additional figures to consider. According to censusreporter.org, Mecklenburg County has an estimated 1.1 million residents, and happens to contain the concentration of all MH crisis facilities in the immediate region. Unfortunately, the surrounding smaller cities, such as Concord, Kannapolis, Salisbury, Monroe, Gastonia and Huntersville, do not have any dedicated crisis MH facilities. Currently, MeckNC.gov states that Charlotte is the country’s fifth largest urban area with over 7 million people residing within a 100-mile radius, however its handful of crisis MH facilities support the entire region.

Suicide is one of the most significant healthcare crises our nation deals with every year, yet many people do not realize how severe it is. According to the United Health Foundation, over 47,000 Americans died from suicide in 2018, which is double the annual homicide rate. Over 1.5 million people attempted suicide that same year. In 2017, suicide was the tenth leading cause of death nationwide, according to the Centers for Disease Control and Prevention (CDC) .

In North Carolina, over the past year alone, nearly 1.5 million people have been treated for mental illness of various degrees, according to the Kaiser Family Foundation. Suicide is the second leading cause of death for children ages 10-17 in our state, according to the North Carolina Institute of Medicine and NC Child. Additionally, the North Carolina State Center for Health Statistics reports that the rate of youth suicides in North Carolina has almost doubled over the past 10 years.

Unfortunately, there is also a severe stigma that causes most people who have loved ones anguished by mental illness, or who suffer from it themselves, to remain quiet. Usually it is due to embarrassment or a false sense of guilt. Other times, it may be denial or simply wishing it to go away on its own. No matter what the reason, this lack of discussion not only harms those who need serious help, but also hinders people from sharing available resources that could benefit so many.

One fairly easy change to the system would be for MH facilities to encourage legitimate and established MH advocacy organizations to distribute their information in the waiting areas of those locations. It seems like a simple suggestion, but in all of the times I visited those facilities with Kelsey, not once did I see any such brochures or flyers, neither were we offered the information during her visits and crisis lockdowns. Many organizations, including the National Alliance for Mental Illness (NAMI), Mental Health America (MHA) and many others, although significantly underfunded by the government, provide free and low-cost services and support groups, which can greatly benefit those facing these issues on a daily basis. However, if no one tells the patient and their family about those services, then how will they know where to turn to for help?

Additionally, not once did any of the doctors or therapists mention options that could help us determine future care for Kelsey. According to NAMI.org, “A psychiatric advance directive (PAD) is a legal document that details a person’s preferences for future mental health treatment, services, and supports, or names an individual to make treatment decisions, if the person is in a crisis

and unable to make decisions.” This is a way of taking the “guesswork” out of a patient’s care, even if they are an adult. It is filled-out while the patient is in a more stable state-ofmind, so doctors and caregivers can understand what their wishes are for when they are in crisis and can’t make responsible decisions.

After Kelsey turned 18, she decided not to take her medications anymore or seek help from her psychiatrist. It was only 6 weeks before she was in crisis and returned to a MH emergency center in Charlotte. To our horror, my daughter refused to sign the HIPPA form allowing her father and me to discuss her care with the doctors and staff. We were cut-off, without any opportunity to talk to them. At that time, she was still a senior in high school, without her own driver’s license, unable to care for herself, unable to support herself, yet, we were locked out due to a decision she made while she was mentally unstable. If she had signed one of the PAD forms prior to that crisis incident, the doctors would’ve already known and been able to include us in her care discussions. As it was, we were only allowed to know when she would be released so that we could pick her up. This is only one of dozens of key issues I could mention in this article, but unfortunately, I do not have the space to do so.

While doing my research, I realized there were plenty of books written by doctors and therapists on various mental illnesses. Yet, only a handful have been written with the idea of dealing with the day-to-day life of coping with the difficult situations that arise as a result. There were even fewer that were written from a parent’s perspective. I only found a single book of note that was written in the past 10 years, which is by the NY Times bestselling and Pulitzer Prize winning author, Ron Powers, called No One Cares about Crazy People: My Family and the Heartbreak of Mental Illness in America (Hachette Books). This topic is a major void that has to be filled!

When addressing issues related to mental illness, we have to start taking new approaches and improving old ones in order to have successful results. Currently, North Carolina and most of the nation’s MH facilities rate very poorly across the board. It is crucial that these areas are given significant attention, especially in light of the additional mental stress from the current COVID-19 crisis.

When addressing issues related to mental illness, we have to start taking new approaches and improving old ones in order to have successful results. Currently, North Carolina and most of the nation’s MH facilities rate very poorly across the board.

Most of all, it is important that mental illness issues are addressed properly. We can’t allow any “stigma” to prevent people from getting necessary help. Please, discuss any MH issues with trained medical staff, but also find the various resources available in your community.

For more information about MH resources, talk to your physician for advice. Additional local resources can be found by contacting the National Alliance for Mental Illness at nami.org, Mental Health America at mhacentralcarolinas.org, Cardinal Innovations Healthcare Solutions at cardinalinnovations.org, and Amazing Grace Advocacy at amazingraceadvocacy.com. These organizations also train much-needed volunteers to help with the local communities.

Please look for the release of Kimberly Brouillette’s upcoming book, Lost in the Looking Glass: a Family’s Journey through Schizophrenia & Suicide. (Release date: fall 2020)