Time For a National Discussion on Mental Health

I've been watching the news a bit over the past week.  I'm trying not to immerse myself into it. I can't imagine that would be a good thing.  It seems the discourse has quickly moved to gun control. While I am no fan of guns and do feel it's an important discussion to have I do hope that the discussion on the current state of mental health care can continue.

I've heard everything from the man who shot 26 people and his mother last Friday in Connecticut was Autistic to completely normal, but shy to his mother was trying to get him involuntarily committed to a mental hospital.  It will be a while before we know all the events that led to the tragedy at Sandy Hook Elementary School.  And we can second guess and point fingers, but unless we take real action we are unlikely to get anywhere.

For those who may not remember or have read all my posts my mother suffers from schizoaffective disorder bipolar type.  She has been mentally ill for as long as I can remember, but only started receiving regular treatment for it in the past 11 years.  It's been a real challenge to get her help.  As a family we have felt that our hands are tied because she has the right to live anyway she wishes until something happens. In 2010 that something finally happened when she attempted to abduct 4 children from a bus stop on two different occasions.   The neighbor called me asking me to do something about it.  I had to make the heartbreaking decision to have him call the police.  And for the rest of my life I will wonder what emotional harm those kids may have from the incident.  What I hate more is that I could do nothing to prevent it, but I knew that something was going to happen eventually.  When my mother started becoming preoccupied again with the children and wanting to try and "save" them again we had a hard time convincing CCSB Emergency Services to intervene.  Despite her history they wanted to wait until she actually hurt someone.  It took hours, a trip to the Magistrate and later a trip to the ER when the hold period waiting for TDO placement ran out before we could have her placed in a facility.  During that hospitalization she was declared incapacitated which opened the door for us to file for Guardianship.  A month later I was standing in front of a judge asking him to take away her right to vote, drive a car, have access to her money or make personal and medical decisions for herself.

I've been glorified and vilified for working to help my mom.  I've been told how great it is I'm helping her at the same time I'm being told that there's nothing anyone can do to help her.  I've faced stigma just for sharing a blood line with her.  I've been told by my elected officials to keep up the good work, but they aren't going to help. I've been told I'm a horrible person for trying to help her and not focusing more on everyone else.  I've been asked why we weren't doing more.

The truth is in this country mental health care is elusive.  There aren't enough providers, aren't enough psyche hospital beds and there isn't enough money to keep everything going.  Plus because of privacy concerns the sector tends to function without oversight so quality suffers.

An NBC Nightly News report tonight highlights one of the biggest barriers my mom faced in getting care.  We fall firmly in the middle class who is a forgotten sector of the mental health field.  The very poor can receive help and the very rich can afford their own help.  Those in the middle get virtually nothing.  My mother had a house with no mortgage and alimony, but it was only enough to pay for the basics and 6 hours a week of time with an aide.  But she was considered well off.  She couldn't live with family since we have children to worry about, but couldn't live on her own.  We found the cheapest ALF we could find that would accept her and struggled to pay bills on time.

If you try and spend some time bringing mental health issues to the attention of the public you are scorned for "violating privacy" for the person you are trying to help.  "Violating privacy" is more code word for "I want to pretend this isn't happening so don't tell me about it so I can keep my blinders on."  This mother has been vilified for talking about her son's mental health issues.  But this discussion has to happen for things to improve.  In Virginia we have a Senator and Senator-elect who worked very hard to cut funds from mental health care.  The Senator-elect even cut funds (during his term as Governor) even while crying with the families of victims of the VA Tech shooting.

The time for treating people who suffer from mental illness or substance abuse like this reporter should end.  We are all worth receiving the help we need and having our voices heard.

We need help and those of us who are doing all we can to help loved ones who are dealing with mental illness can't do it alone.  I can't scream loud enough to make things better.  I need you all to amplify my voice and the voices of others who are dealing with mental illness directly or indirectly to make a difference. We need you all to care.

Pardon Me While I Steal Some Sleep...

I've been away a while.  I'd love to say I've been just too busy, but for the most part I'm just so tired.  It's been a long year and I'm really looking forward to January 1, 2013.  Next year certainly can't be worse than this year has been.

The Joint Commission complaint reached it's conclusion (however I'm not allowed to find out specifics of their findings) and the Human Rights complaint has concluded.  In the latter complaint I was assured by the hospital that they had made a mistake regarding Guardianship and had retrained most of their staff to ensure the issue would never happen again.  I asked what happened to the very rude Mr Gromewald and the doctor who made more mistakes than one should be allowed in a lifetime and I was told I could not be privy to any HR issues.

I'm irritated, but ready for this chapter to close.  I'm hopeful that Dr Fox got smacked upside the head by his colleagues and has learned from his mistake and that someone permanently removed that stupid laugh from Mr Gromewald.  If they didn't I'm sure I'll find out and then will make sure they understand their mistakes.

Now I'm focused on trying to get that blasted house sold and find time for something other than Guardianship/Conservatorship work.  But I'm getting worn down.  My husband is looking into a job opportunity out of country.  My first thought was "what am I going to do about mom's medical care," but now I've decided that I shouldn't put my life on hold.  If my husband takes the job and we move I'll figure out the rest.

This comes at a time where I'm getting hassled by family again.  Some say I do too much and some complain that I didn't listen or wait long enough for them to do things.  I did what had to be done and I make no apologies for it.  The past several years have been hard, but necessary.  There's nothing else I could do differently and still live in my own skin.

Election season is coming up and I want to remind everyone to please look into what candidates care about and their records on important issues.  I won't tell you who to vote for because we all have different priorities.  I would like to point out a really well done article from this month's issue of DAV Magazine. In it there is an article posing questions to both President Obama and Governor Romney on key issues that specifically relate to the military.  One portion of it deals with Mental Health.  I encourage you to read it.  Obviously I'm concerned about Mental Health, but also Veterans' Issues since my husband is a disabled vet. The article does address Mental Health and the candidates responses really told me the understanding they each had on the issue.

I hope that everyone reading does their homework and votes for what's important to them.  And I'm really hoping whoever wins makes Mental Health Care and Health Care in general a priority.

My mom is slowly improving.  At least health wise.  She's been doing better mentally, but as her physical health is improving her mental health is sliding back a bit.  I'm hoping we can stay on top of it and avoid any more hospitalizations.  With the money situation getting dicey I really don't want to pay any more hospital bills (especially from bad hospitals).  But the good news is that my mom finally got through the Medicare Donut Hole.  Her scripts went from $800+ a month to $300+ a month.  We get a break for a few months anyway.  Come January it starts all over again.

Introduction, of sorts

Well since I'm new to this I should probably introduce myself.  I am 35 year old mother of two, married and am currently working towards becoming a lactation consultant.  I spend more time doing volunteer jobs than anyone really should.  I think it probably comes from an insecurity that makes me want to prove my worth to the world at large.  It's crazy since no matter how much you do it is never enough for everyone.  My volunteer commitments now are PTA, soccer coach for my daughter's team, DAR, CAR and helping moms breastfeed their babies in the way they wish to do so.  Striking a balance between family commitments and volunteer duties has been difficult, but I don't think I would have it any other way.  Well, I would change some things. 

But right now my life is hard.  Not that I would ever say it has been easy at any point in my life, but it is especially hard right now.  My mother is a paranoid schizophrenic. I knew from a young age she was different than other moms.  She would sleep all day.  Spend way too much time listening to Pat Robertson and calling the 700 Club for someone to pray for her and often would end up in arguments that would last hours.  I always felt bad for the poor person on the other end and guilty for being happy it wasn't me being yelled at.  She always thought people were following her and trying to kill my father for insurance money.  Whenever she saw a red car she believed it was a particular employee of my father.  I always wondered why my father employed her if she spent all her time following us. 

But recently she has gotten far worse.  She has been involuntarily commited three times in the last 13 months.  She has no insurance so we are at the mercy of the Community Service Board and the Police to decide if she needs help.  And they are limited by our wonderful state laws that refuse to adequately fund mental health.  Even the massacre at Virginia Tech did nothing to open the eyes of our lawmakers.  The only difference I saw was that when she was on Temporary Detainment Order before the new laws took effect the hospital was not allowed to acknowledge she had been admitted. Now they are allowed to tell us how she is doing and that she is there until the court hearing is held in 2 days, then we are cut off again.  I've also been told that the ability for the CSB to cover a hospital stay longer than 10 days was removed.  Thanks Tim Kaine!  Hope you don't meet me in a dark alley.  Or better yet, hope my mom is roaming your neighborhood.

So I hope you are interested in hearing about my plight over the next few months, years, centuries, while I go through the process of suing for guardianship of my mom and try my best to get her the help she needs despite no help being available.

I'll share with you my biggest fear right now. Every time I hear my phone ring a part of me worries that this time it will be a call that my mom hurt someone.  Every time I stop by my mother's house I worry what I will find.  I feel like this illness took away my childhood and it is trying it's hardest to take away my adulthood.  But the part that bothers me most is that it is trying to take away my kids' childhood.  I can't let that happen. 

I hope you will cry with me a little bit, but more often you will laugh at the absurdity of it all.  Because if you don't laugh schizophrenia wins.

And please forgive my grammar and spelling.  It has never been my strong point.