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WHAT ARE YOUR FAMILY'S NUMBERS?

My son suffers from bioneurological brain disorders. Without the right treatment and support that he needs, his medical condition prevents him from realizing that he has a serious illness. The untreated symptoms of his brain disorders controlled his thoughts and his actions. His untreated symptoms also controlled our lives.

My son has schizophrenia, anosognosia (in laymen’s terms "lack of insight" or "lack of awareness" that he is ill), a history of Capgras Syndrome, a history of command hallucinations, and PTSD.

So what does all this translate into? A preventable tragedy that was almost impossible preventing.

What are our numbers? 1:6. That’s our family’s conservative ratio.

Now what does this ratio mean?

It means that my son represents the one (1) who is suffering from his illnesses. The six (6) are the other people in our family who are directly connected to him.

Our lives have been significantly effected by his untreated or treatment resistant medical illness through the constant emotional stress of the daily trauma and drama of the severe symptoms including psychosis and crisis evaluation teams.

Having situational mental illness like depression or PTSD due to the overwhelming hopelessness and isolation of caring for someone with such a severe brain disorder when they are not being properly treated and their symptoms are not under control.

The loss of wages from jobs we have had to give up or lost due to having to care for our loved one. Having to follow one crisis after another perhaps having to move from one place to another due to stigma.

Missed chances of advancement at work or taking lower paying positions in order to be available to the needs of our loved one.

The overwhelming family stress that can lead to divorce and further financial and mental decline of the entire family.

It means that my son’s illness affects more than just him. It also, greatly impacted his school system, our local sheriff’s department, the juvenile courts, our relatives who helped to provide financial aid to get him on the ‘fast track’ to treatment and the needed legal procedures we had to secure.

His illness dictated his and our lives.

How we spent our time, our money, our emotional resources. There was nothing left over for our needs. We were all consumed trying to save him!

But we are among the lucky ones. In spite of the odds against us, our family stuck together and did what we needed to do to secure his compliance to the right treatment for him.

What was the cost for his intervention and treatment? Here is a start at some of our other numbers:

Lost wages: I quit my job at DreamWorks and later at Disney on a union job that paid me $70,000 a year with full benefits. I was the only one who could care for my son.

Mental Health: I didn’t have any. I lived in constant high stress of being attacked and threatened by my son along with the stress from the fear of losing him. The stress of not being able to find timely treatment for him. I paid not only with money, but with my mental and physical health.

Probate Conservatorship: $6,000.

One month in a dual-diagnosis facility before his SSI started up: $6,000.

Qualified therapist who didn’t take insurance: $160.00 per hour once a week.

Equine therapy which worked the best from all the therapies we tried: $160.00 per session per week.

‘Fast Track’, by passing waiting list for medical recipients‎ and getting into an outpatient treatment facility that held the most promising form of treatment for him and they didn’t accept our insurance: $250.00 per appointment for two years until they finally accepted his Medical.

Blood monitor company: $150.00 per month. We’re going on our seventh year now.

Licensed nutritionalist: $120.00 per visit.

Independent blood test for mercury and other toxins: $180.00.

The list just go on and on. He was in therapy since he was in second grade to work with the behavior we were trying to deal with daily.

We spent and loss thousands of dollars. We have little retirement saved and my husband and I are 57.

It was worth every penny and every sacrifice. When we look and enjoy our son today, there is no price we can put on his life or on how close we all are now.

The problem is, why should we have to pay such a high price for medical treatment for our son?

What about the families who do not have the resources we did to secure early intervention and his compliance to treatment?

What happens to them? What are their numbers? How much worth can you give to a life?

What if my son decides to be noncompliant in the future? What would our fate be then?

All this effected and still concerns my whole family.

My son’s illness isn’t just his illness. It’s a 1:6 ratio in our family. I’m not counting my brother’s suicide at 15 or my mother’s issues and how they impacted me and my family.

What are your numbers?

There are no statistics that include our numbers in their studies. We are the ones they don’t know about. They don’t talk about. We are more invisible than the ones we advocate for.

It’s up to us to unify and speak out in one voice for what we need. For our rights to be able to get the needed treatment for our loved ones medical condition.

It’s their illness but It effects us all.

Celebrating His Big 30!

This year, Thanksgiving fell on my son's 30th Birthday and he has never been better or more happy! He enjoyed a wonderful holiday dinner with family at his Aunt Sue's and then opened birthday cards with his nephew Sean Michael and his dog helping and sharing in the joy! Tonight, he gets to have our family traditional dinner of choice. Three days of pie, cake, turkey, laughs, and full stomaches! We are truly blessed and joyful!

"Caregivers for mentally ill (severe brain disorders) push for support"

I found this post merited a place on my blog because it touches on the needs of a family trying to provide the needed care for a loved one who suffers from a severe brain disorder. It is an overwhelming task with no breaks and little appropriate support. We suffer from trauma and battle fatigue after year upon year of struggle, worry, and financial distress. We need help to help care for our loved ones who suffer from a severe medical condition. Other brain disorders are provided support. Why not our families? "Caregivers for mentally ill push for support Government should finance health care workers to come into the home, Sudbury advocate says CBC News Posted: Aug 1, 2013 9:41 AM ET Last Updated: Aug 1, 2013 11:36 AM ET A Sudbury woman caring for a son with schizophrenia says new guidelines to support care-givers of the mentally ill may help. Some of the guidelines recently proposed by the Mental Health Commission of Canada suggest changes to privacy laws to allow caregivers more access to confidential records. Sudbury's Margaret Jones - whose son was diagnosed with schizophrenia as a young adult - said getting access to his treatment information wasn't an issue for her. But there was practically no other support for her almost 30 years ago. "I was taking sleeping pills because I couldn't sleep," she said. "I was thin, I wasn't eating. It was really hard for me to concentrate on anything other than keeping him out of trouble and keeping him safe." Jones said there are more community programs now, but said the government should finance health care workers to come into the home. Pushing for change. Meanwhile, the CEO of the Sudbury/Manitoulin chapter of the Canadian Mental Health Association said the new guidelines are a beginning. Marion Quigley said care-givers can be more involved in the welfare of a mentally ill person by removing confidentiality. "The legislation protects the individual's right to privacy and so this report talks about some of those changes that people are asking for," she said. If the changes to privacy laws to allow caregivers more access to confidential records comes to fruition, Quigley said that would enable them to know how to best care for their relative. She added the CMHA will be part of a campaign in the coming weeks to push for change. "I'm not very optimistic, I think that legislative change takes a long time, however, I am optimistic that we can work together and set up strategies in the meantime." The CMHA will work on providing caregivers with more support in the meantime, Quigley noted."