Messages By: mscomputer

My  79 yr old father is in the late stages of Alzheimer's disease.My 23 yr old daughter was diagnosed with early onset bipolar disorder at the age of 14, which was triggered by the sudden and unexpected death of her beloved father/my dear husband 6 months prior to that. Both suffer from no-fault, neuro-biological brain disorders where the presenting symptoms are abnormal behavior and thinking, which may appear to be within their control but it is not. Their ability to accept and understand their illness is also difficult because it is their brain that is not working properly. Besides Alzheimer's disease and bipolar disorder, our family history, past and present,  includes depression, obsessive compulsive disorder, schizophrenia, anxiety disorder, eating disorders, Tourette's, mood disorders and other brain illnesses. Most of my family members have college degrees and are completely functional and productive members of society---with medication and treatment.  

Whether it is a stroke, bipolar disorder, a traumatic brain injury, Alzheimer's disease, major depression or other neurobiological brain disorders, one's whole physical, psychological, intellectual, emotional and spiritual self is affected. The lives lost to and chronic disability from these disorders are incredible. Most people understand and are compassionate about cancer, heart disease, diabetes and other "medical" impairments. But that is frequently not so with brain disorders. That's why terms like "going psycho, schizo, looney, mental, nuts, crazy" are such incorrect and stigmatizing words. These illnesses are as real, devastating, painful and life threatening as the other previously mentioned diseases. That many states still do not  require health insurance companies to give parity for "mental illnesses" and their treatment is deplorable. 

I was skeptical when I heard about Dr. Phil's show on bipolar disorder, concerned that it would be sensationalized and dismissed. I watched it intently and applaud his approach with the two guests, the information presented, his insight, compassion and the challenge and help he offered to his guests. "Knowlege is necessity" and Dr. Phil hopefully enlightened many, many viewers and gave people hope. I encourage viewers to contact their local NAMI chapter and the NAMI website for excellent info, classes and support groups. I also recommend  the Child and Adolescent Bipolar Foundation and NARSAD organizations on-line for more information. 

As a mother who has dealt with the ongoing issues related to bipolar disorder for my dear daughter, I can say that this has been the biggest challenge in my almost 55 years, especially trying to find help and a safety net (other than me) for this talented and creative young woman. She has been doing better with the help of newer medications (although the side effects have included substantial weight gain and acne----pretty awful when your self-esteem is almost zero and you're female in this appearance-obsessed culture!!) but this illness along with the trauma of losing her dad at a very fragile age has absolutely decimated her life. My husband's death was the absolute worst loss I have ever faced but it pales in comparison to what I've been through with my daughter. It is an on-going loss for both of us and I'm filled with deep sadness, fear, frustration and helplessness on a daily basis. I will always have hope but it appears that this illness, even with treatment, will be chronic and without resolution. That she is alive today is a true miracle and I hold onto that.  

Bipolar disorder is indeed a very complex brain illness that manifests itself in a variety of ways. While the two guests featured on Tuesday's show were more extreme, most people with bipolar disorder are not violent towards others but suicide is a huge risk in this population, as several parents who lost children to this horrific illness have posted. Even accounting for earlier and better diagnosis, why is this so prevalent? Whether it's bipolar disorder, OCD, autism, ADHD or other brain disorders, I'm amazed at the number of families dealing with this in both younger and older children. There's no doubt that genetics play a major role but environmentally (besides family stressors, like death, divorce, sexual abuse, etc), what else is contributing to the numbers of persons being treated for serious mental illness?? Is it the toxic and uncivil culture we live in? The air we breathe? The water we drink? The food we eat??  

This is a national crisis that doesn't get enough attention, funding and respect. The economic costs to families, employers and to society at large are enormous.  We caregivers are burned out, left to find what little help exists on our own and often times, are actually blamed for these biologically based disorders. If my daughter had cancer, we would have been directed to the best treatment centers, specialists, support and recovery programs with great compassion & kindness, and insurance companies wouldn't be batting an eye over most claims.  

With the current administration's focus on the war in Iraq and the billions being spent on defense and homeland security with no end in sight, any programs and research for mental health/brain disorders that currently exist are being severely cut back. It is a disgrace that we do not have some form of national health insurance. Whether it's our loved ones with serious brain disorders or the victims of Katrina, how a society/government treats its most vulnerable, traumatized and needy citizens says much about who we are. It is NOTa pretty picture.  

and I can't imagine the pain, heartache, raw grief and anger you have felt and suffered following the death of your beloved husband. The fact that he was hospitalized for such brief time periods given his serious brain disorder and other medical problems was incomprehensible yet it happens way too often. Re: the extremely insensitive and cruel remarks that the nurse practioner made to you, I think you should write her a letter and tell her the extra pain she inflicted on you during the worst time of your life. There are definitely some excellent and compassionate professionals in the mental health field but there are many who are not. When my then 14 yr old daughter attempted suicide 6 months after her dad/my husband died of a rare form of heart disease, a prominent psychiatrist  who treated her at the hospital said to me: "How is Mel ever going to get better when you're always around?" I was fighting to save the life of my precious child, who had a serious illness? Would a doctor dare say that to a parent if the child was suffering from cancer??  My grief counselor encouraged me several months later to write a letter to that doctor and I did. The psychiatrist never responded but I hope that she seriously thought about what she said to families in crisis from then on. It helped in my healing process. 

My heart goes out to you and I'm sending you hugs and hope. Grief/loss is the worst pain I have ever felt and it permeates your entire mind, body and soul. Yes, your husband's life mattered--- to you and to everyone who knew and loved him and yes, he needed and deserved better care and treatment than what he got at the VA. . He was truly  fortunate to have such a strong and supportive wife in you. You couldn't save him from this deadly brain disorder but you loved him, stood by him and in the end, that is what truly matters. I would encourage you to find a grief counselor to help you through the journey ahead. My heart goes out to all of you who have lost a loved one to this terrible illness. That will be my worst fear until the day I die.