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.

School Shooting Tragedy: Could it have been prevented?

Today a gunman entered a elementary school in Connecticut and killed nearly 30 people, most of them children.  It is a horrible tragedy.  I can only imagine the emotional scars of the survivors and the pain of the family members left behind.  It's something we never want to see happen.

In the following days I'm sure we'll be hearing lots of details, but I'm concerned where the conversations will go.  It's natural for us as a nation to find someone or something to blame.  Unfortunately answers aren't so simple.  The shooter has been identified as a young man with a history of mental illness.  While very few who suffer from mental illness become violent I worry about watching a nation start to question why someone didn't do something to stop him.

The reality is that not all people will show signs before they act.  Mental illness is a fickle sickness to predict. It isn't linear, and no matter how much we want to we can't apply our own version of logic to an illogical circumstance.

Regardless of your opinions of what should have happened I hope that you will let your elected officials know.  The fact is that mental health care services are few and underfunded.  Even for those with great health insurance there isn't enough help to go around.  And often times even if you can see someone needs help and you do everything you can help doesn't come.  I've had to fight to help my mother get the help she needed, but it's always an uphill battle.

My prayers are will those affected by the shooting and I hope that we can all work together to make our world a safer place.  Whether we need gun control, better mental health services, better security at schools or all three I hope we can all make our voices heard.

Update On Mom's Health Dec 2012

After a very difficult summer I'm happy to say my  mom is healthier than she's been in a while.  Her up days are more "up" and her down days are less frequent.  I'm able to occasionally have coherent adult conversations with her.  The tremors haven't gone away and can be worse at different times of the day.  She is unfortunately on a cycle of a urinary tract infection about once a month.  We are pushing liquids more for her, but she's unwilling to ask the staff at her ALF for help in opening water bottles so I'm not sure what to do.  I can't be there every day to make sure she drinks.  Her doctor didn't want to give her something to prevent the UTI's, because he was concerned about immunosuppression.   So for now we'll push fluids and hope for the best.  At least now her primary care physician allows me to call in and report her symptoms and he calls in antibiotics so I don't have to drag her into the office every time we see symptoms.

For those who may not know or remember UTIs in older adults, especially women, can cause confusion, lethargy and a general decline in mental ability.  Unfortunately the mental decline due to her schizoaffective disorder and the permanent Tardive Dyskinesia caused by Haldol also contribute issues with hygiene that fuel the infections.

For now she's been out of the hospital longer than she has in the last several years and I feel her psychiatrist has finally found a medication combo that is helping her.  She sees a neurologist in January who may be able to help get more control over the tremors.  That isn't without risk and I'm hoping that doesn't land her in a psyche ward while we try out medication changes.  I really wish there were more options for outpatient help during times like these.  Funding for such programs were cut years ago.

For me, I'm still working on the house sale, but things are slowing down a bit.  I decided to turn to advocacy, but as I've found you have to be careful who you turn to.  I found out about a group that advocates for elderly psyche patients.  Well, they say they advocate.  I told my mother's psychiatrist I was going and he scoffed and said he used to go, but the group only managed to get gero psyche beds reduced so they aren't very effective advocates.  I was told to come and briefly plead my case to them only to find them apathetic and definitely not interested in improving things.  The rumor of more beds at a particular psyche hospital couldn't be confirmed by those in attendance who work at the facility in question.  When I attempted to discuss my concerns I was cut off and told to talk about it in private.  I was invited to talk about these concerns so I was very irritated that they couldn't take time to listen to the issues I was bringing up.

So I'm trying other avenues, but am feeling like change in the Virginia mental health system is a pipe dream.  If anyone cared the wheels would be turning.  Right now they are rusted shut.

On another note, my doctor has told me he feels I have a mild depression going on.  Not really a surprise with everything happening over the past few years.  I'm wondering if there's even been a time in my life where I haven't been at least a little bit in a depressive state.  I've been ordered to take time for myself.  I'm trying, but it's hard.  The first thing on my list is to try to let go of the guilt of not being able to do more to make things better for my mom and others dealing with mental illness.  It's not a battle that many people feel is worth fighting and without homing beacons I don't think I can find enough people who want to help to make a difference.

I'm going to go eat some chocolate and read a cheesy novel.  I think I'll make more progress that way.

Fun With Real Estate

One of the best parts of being a Conservator for an Incapacitated Adult is dealing with the liquidation of property.  No matter how you do it no one is happy and will blame you for what goes wrong and ignore what actually goes right.  And in the end I'm guaranteed to be exhausted and people will wonder why I'm not dancing in the street.  Although I might find some energy to do that for a couple of minutes.  That's in between settling all the outstanding accounts, paying back family loans, and researching secure investment opportunities.

Right now the house sale is pending, but we seem to be hitting snag after snag.  For those of you going through this I'm shedding a few tears for you.  It sucks!  It would be one thing if my mom was no longer here and this were my inheritance we were talking about.  I'd have 4 siblings with equal interest in the proceedings and I could just refuse to do the work, but since the money from the house sale will pay for my mother's medical needs for hopefully the next 5 years it's important to get it done.  She doesn't have the money to pay for her ALF right now and is living on a pittance of Social Security and loans from family members.

So, since there is no money I felt it was necessary to take a contract from a company who flips houses.  It was the highest of two offers. The house is worth more, but I can't seem to convince anyone of that.  This sale requires court approval so I had to gather all the information needed for the Commissioner of Accounts (he has to approve the sale) and write a letter about who the potential heirs are (ha, money left over.  That's funny!) and if there's a will and how much money she has.  After submitting it I got almost daily calls/emails asking me to bug the Commissioner about approving the sale.  Yeah, I have to deal with this guy for at least the next 5 years.  I really don't want to pester him so much he makes my life harder than it already is. He approved the sale 4 weeks before closing and we've been waiting for the closing date to be done with the whole process.

Well yesterday it turns out the company buying it isn't really the company buying it.  The buyer planned to assign it to another company (um, why not buy it in the other company's name then?) so I'm being told I need to resubmit the paperwork because as the closing lawyer said the report to the court was "poorly written."  I suggest he say that to the Commissioner's face and let me watch what happens.  It would make a great YouTube video for sure.  So, I'm facing another round of paperwork and possibly another fee that I'm not paying since a) there's no money and b) I didn't make the mistake.

To me it sounds like they are actually doing something on the shady side.  I've told my agent to work it out.  After all, I'm the only one in this process who doesn't get to draw a paycheck at the end.

So, if this snag doesn't get resolved closing will be pushed back until January sometime.  God, I hate that house.

And if that isn't enough two cities are arguing over who receives my guardianship reports.  State rules are clear on the point, it just seems like very few actually read the rules.  Considering 3 cities can't decide where her residency is I guess I shouldn't be surprised.

Anybody know where I can get some Calgon?

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.

And it Continues...

I'm still working on the complaint to the facility my mother was hospitalized at in June.  Turns out the VDH doesn't take complaints on Psyche facilities.  It goes through the Human Rights Committee local to the hospital.  The way they work it is: they take my complaint, forward it to the facility, the facility investigates itself (and I expect will find no fault in themselves) and then I have to file an appeal.  No facility should be allowed to investigate itself.  That's just ridiculous.  And to top it off they forwarded my complaint to the very person at the facility who lied to me when I called.

Thankfully I found that out this morning when I called for the email address to send the more complete complaint I wrote up for the VDH.  I was told that the complaint would then have to go to a higher up official at the facility.  Sad thing is that the guy who was part of the problem is on the Human Rights Committee Board.  Now I know this complaint will go no where. But I have to go through proper channels before I can sue them.

The guy in question called for more information this morning and when I informed him he was part of my complaint he had the audacity to laugh at me.  That and his condescending tone tells me he isn't taking this seriously and figures I'll just go away.

It is now my personal mission to make sure he loses his job and is living out of a cardboard box.

My mom, meanwhile, is still suffering the effects of her stay.  She isn't delusional, but is horribly depressed.  Her mood is flat and she lays in bed all day.  She only gets out of bed for meals.  She didn't even show interest in the chocolate my brother brought her the week before.  Chocolate never lasted more than an hour in her hands before. I really wish there was a way to just take her off all her meds and have her somewhere she can't hurt herself or others.

It's pure fantasy and just manages to make myself more depressed.

The Never Ending Battle...

It seems when things finally start to slow down it speeds up.  I am deep in caregiver fatigue that I can't seem to claw my way out of.  Here's hoping for some light to appear at some point.

I headed out of town for a few weeks for a conference and a family commitment and got a call that my mother believed Satan was attacking and marking her body.  She was evaluated by the CSB and was taken to Norfolk General.  For some strange reason she was placed at a hospital in Kilmarnock VA despite the fact the Gero Psyche doctor who had treated her in Norfolk was busy making a space for her in the local facility.

To make the story concise and short the facility in Kilmarnock seemed great until we realized they were refusing us access to our mother.  They had our Guardianship papers, but felt it didn't cover a psychiatric stay.  They were confused about what medications she was taking when she arrived and pushed her out as soon as we started pushing the Guardianship issue.  They tried to use HIPPA against us to protect my mother's "privacy."  They ordered a medication for her that has already caused Medication Induced Parkinsonism and I'm worried it will become worse.  And I think she is worse off than she went in to the hospital.  She's very confused and quite delusional still.  I've called a lawyer and have been suggested another one.  All this while I'm knee deep in her bills, exhausted and figuring out how to get her house sold so I have one less thing on my mind.

Below is a copy of the complaint I am making against the hospital with the VDH tomorrow.  At some point we have to catch a break.  There has to be someone out there who can make my mom at least functional.  It's killing me to see her this way.

My mother was hospitalized at this facility following an episode at her assisted living facility (Lydia Roper Home) in which she believed she being attacked by Satan.  She was evaluated by Norfolk CSB, transported to Norfolk General ER and later placed at Bridges Behavioral.   One of the Guardians of my mother insured copies of our qualification papers were placed in the hands of Sheriff's Deputies with ER records sent to the facility.  A nurse on duty at Bridges verified that the papers had been received.  During the course of my mother's 8 day hospital stay the doctors refused to speak with either of her guardians (my sister and I have full guardianship and my co-Guardian called on a daily basis to check on her progress) or provide us the information needed on her care.  The medical staff did not speak to her private doctors or the ALF where she resides.  They asked my mother what medications she was taking and which doctors she saw.  She could not remember so they based medical decisions on her  garbled memory while in psychosis.  When we pressed for access to her medical information and to speak with her physicians we were denied because the facility didn't think that Guardianship covered psyche services.  They cited HIPPA as the reason for their refusal despite actively violating HIPPA regulations.    They had my mother sign some kind of document allowing us to speak with the nursing staff, but since she has been declared an Incapacitated Adult by the Circuit Court of Chesapeake, VA she does not have the legal right to sign any document giving anyone access.    

Despite being told there was no discharge plan in place on Monday June 25, 2012 (when we pressed for information and access based on our status as legal Guardians) on Tuesday June 26, 2012 at approx 515pm I received a call that she was to be discharged on Wednesday June 27, 2012 because Medicare had refused to pay for her to stay longer.  I spoke with Jack Grumwald, Program Director for the hospital at approx 730am on Wednesday June 27, 2012 and he informed me that Medicare had cut off funding and they were giving my mother the "courtesy" of an extra day and should have discharged her the day before.  He believed she was not under the care of a private psychiatrist, although I personally had taken her to see her psychiatrist 5 days prior to her hospitalization and she is visited twice weekly by a psyche nurse through Hope in Home Care.  I asked to be put on record as opposing the discharge and asked for the decision to be reviewed by Medicare because my phone call two days prior indicated to me that she was still very confused, lethargic and suffering from delusions.  I was refused.    I contacted Anthem BCBS who administers her Medicare plan when my mother's person advocate, Laura Buchanan was first available approx 845am the same day and was informed the hospital had not asked for more time and there was no denial on record.  The hospital had not asked for Wednesday June 27, 2012 to be covered.  I was not given any discharge papers from the hospital, but was provided copies of records requested and received by her ALF.    

My mother was prescribed a medication during her stay at this facility that her private neurologist believes has caused the irreversable medical condition - Medication Induced Parkinsonism.   The two Board Certified Geriatric Psychiatrists my mother has seen in the past year have stated that the drug in question, Haldol, should not be given to any patient over the age of 50.   The doctors at this facility indicated at discharge that they had increased her dose of Zyprexa to 10mg (they believed she had been on 5mg, but wasn't taking it).  She had been on 12.5mg of Zyprexa per day prior to her hospitalization and the Medication Administration Records at her ALF reflect she was receiving her prescribed dose and no refusal of meds were noted.   A copy of her current Physician's Orders were sent to the facility along with all of her ER and Guardianship papers.  If there were questions they certainly should have known who to call. 

On Wednesday June 27, 2012, my mother was discharged and driven to her ALF without notifying my mother's Guardians or the ALF, despite being asked to do so prior to her physically leaving the facility.  She arrived at the ALF filthy and had bruises on her left arm and her legs per the Director of Nursing's recollection of events.  The director had her bathed prior to my co-Guardian's arrival who then took pictures of said bruises.

Reading through the records provided to me it appears that the physicians treating her at this facility believed she was not taking her medication nor being cared for by her private doctors.  With this assumption they were effectively practicing medicine blindfolded with their hands tied behind their backs.  This is the very issue that brought our family to sue for full legal Guardianship in the Circuit Court of Chesapeake Virginia on June 8, 2011.  We wanted to avoid these mistakes and act as her voice in these situations.    I feel my mother's care at this facility was inadequate and inappropriate for the situation.  As her Guardians, my sister and I could have easily provided all the information they would have needed to make appropriate medical decisions for my mother.  They chose to ignore the information freely offered and could have easily cost my mother her life in the process.  Seeing her before and after the hospitalization I feel her mental state declined instead of stabilized during her hospital stay and I am now afraid to get inpatient help for her despite feeling it is needed.  And if the hospital indeed gave her Haldol during her stay they have made treating the tremors more difficult.  It appears from Rappahannock General Hospital's website that none of the doctors working at this hospital are board certified in Geriatric Psychiatry.  They therefore should not be treating anyone over the age of 50 who requires a Geriatric Psychiatric facility.  They also had her diagnosis wrong on her paperwork which could have possibly made a difference in her treatment.  She does not have Schizophrenia - paranoid type.  She has Schizoaffective Disorder - Bipolar Type.    

I feel she was discharged prematurely from this hospital, but after reading the documentation I feel her life and health was at risk if she had stayed at this facility.  This facility needs training on what Guardianship means and to utilize information given to them.  Before we had been appointed as her Guardians we would provide letters to medical staff at such facilities to insure they understood the entire situation.  Guardianship was supposed to mean that I no longer had to be at the mercy of a nurse or physician actually reading my letters as many of these letters never reached her physicians in the past.     There was no Social Worker available during my mother's hospitalization.  We were told she was on vacation.  Any psyche facility should always have one available during regular working hours at minimum to help in such situations. 

I fully intend to seek legal counsel to ensure the hospital does not provide such poor treatment to another patient under their care.