Communication! The toughest job....

Although I usually write about what's going on with my mom (she's doing okay, up and down days, but pretty good) I've shifted focus to help get my kids ready for the real world.  The real world right now involves issues in middle school. Sigh

For those of you who do not know, I have two children who are considered special needs.  My son has a great deal of difficulty with communication and social skills.  My daughter has more medical issues related to a birth defect, sinus, and hearing issues.  Both of my kids are wonderfully smart, as all kids are, but they work harder than most just to keep up.  

I've ended up exhausting all of what I can find in the community to help with pragmatic communication skills and I'm left to figure out what I can think of that will help.  So with Google on my side and a Communications degree under my belt I've found a few things that have helped my son that I'd love to pass on to others.

Internal Voice

Have you ever noticed when you read you hear your voice speaking the words in your head?  I remember when I finally figured it out it helped me understand what I read so much more.  I was probably around 6 or 8 years old, but I remember the shift.  Most people I've talked to can't figure out how they did it.  It just happens, and a few of the adults I know have never developed it.  They have to read out loud to understand the text.  When my son's LCSW mentioned she didn't think he had an internal voice and it was affecting his reading grade I set out to find a way to teach him how to develop an internal voice.  

It all started with some flashcards that I had of sight words.  The first time he reminded me of Brick from the show "The Middle."  He would read the word and when I told him to say it in his head he would whisper the word again.  It took a week of every few days pulling out the cards and asking him to practice (in the car, before bed, a few minutes in the morning) for 5 minutes or less each time for him to get the hang of it.  He caught on quickly and after a few weeks we graduated to short books. A few months later he had it down pat. 

Getting to the point

My son tends to talk in novels when a paragraph would do.  This has been especially difficult in school when he's been bullied or something happened and he's asked to explain.  He can't easily do this and a busy teacher or administrator isn't going to take the time to figure it all out. Add being upset to the mix and even the most succinct speakers struggle. So we've tried this program based on the rules of journalism to bring things down to paragraph size.

When he comes to me telling me a story from the beginning of time, I ask him to clarify for me at the start: what is the purpose of what you are telling me?  They fall into one of these categories

Do you want me to do something?

Do you want me to just listen? (uber important!)

Do you want me to help you think of solutions?

There can be other categories like "I want to socialize," "I want to tell you about my day," but generally when we are culling down a novel to a paragraph we have an issue to resolve.

From there I go to the tried and true 5Ws and an H.  They are also known as: Who, What, When, Where, Why and How. 

You can put them in any order, but I try to put them in an order that asks for smaller details first.

Who are you having a problem with? 

When did it happen? 

What were you doing at the time/What did you do when it happened?

How did it happen? 

Where did it happen/what class? 

Why was there a problem?  

This helps with organizing thoughts.  It isn't perfect, but it is a start.  If you find this doesn't work, try coming up with a list of organizing questions that seem to fit your child's situation best. 

Happy communicating!

Mental Health Essay: I won a contest!

I've been away for a while, but I wanted to share that I submitted an essay for the NSDAR's Women's Issues Essay Contest and I won my state, division and National for 2013!  My prize is the exclusive bragging rights!

This essay embodies everything I've been feeling for the past few years and I hope that those of you reading it have a better understanding of what it is like to advocate for a loved one suffering from severe mental illness.  It is humbling when you find out exactly what you can and can't do to help.  I hope those without first hand knowledge find this informative and those who know the process can see that you aren't alone in the fight.  Hopefully combined we can make enough noise to make real change in this country.

I wish the stigma of mental illness would no longer prevent society and our elected officials from acting.  It's a complex and difficult situation with no clear cut solution.  But maybe if enough of us tell our stories we can change minds and improve mental health care.  I can't imagine it getting worse, but I've been surprised before.

So, without further adieu...


 The Need for Mental Health Care

Mental illness affects one in four adults and one in ten children in the United States
according to the National Alliance on Mental Illness (NAMI). Money, lineage,
intelligence or social status is no protection from it. It doesn’t care who you are or who
you know. But it is often an ignored illness. If a person arrives at an emergency room
with chest pains she will most likely receive life-preserving medical treatment regardless
of ability to pay. If the same person arrives at the hospital in a mental health crisis state
she is at the mercy of what programs are available. Often a patient has to wait hours,
days or weeks for an open bed or all too often leaves without receiving care because none
is available. Often if that patient has insurance the issue can be compounded by
insurance networks. If services are available those who suffer from mental illness often
experience the humiliation of being shackled for safety and are taken to a facility where
their family members cannot check on them. Far worse is the secrecy attached to
receiving mental health care. No one wants to discuss it. It must be kept private. So,
family members who wish to help are effectively rendered impotent and caught in an
endless loop of “we can neither confirm nor deny your loved one’s presence in our
facility.” This leads to dangerous lack of oversight and threatens quality and continuity
of care. Privacy concerns cause those who suffer from the grip of mental illness to stay
sick far longer than is necessary or humane. Imagine walking into a hospital unable to
speak for yourself and the treating medical staff refusing to even verify your drug
allergies or the names of your outpatient physicians with your family. In any other
medical field it would clearly be malpractice on the part of the medical staff. In mental
health facilities it’s standard procedure.

I have experienced the horror that is the mental health system because my mother is that
one in four.

My mother is incredibly smart. She is articulate and is the most creative woman I know.
Her paintings contained the most beautiful lines and colors. I often wonder how she
would have changed the world for the better if her mind hadn't betrayed her.
My childhood was anything but dull. I can’t say for sure when I knew what exactly she
was suffering from. She was a full time mom, but during my elementary school years she
was rarely able to get herself out of bed. Those times were book ended by times of
frantic shopping for nothing in particular or excessive arguments with family members.
By the time I was ten or so I remember her telling stories about being followed and that
someone was trying to kill my father so they could use the insurance money to build a
church. She believed she had secrets that she could be persecuted for if she let them be
known. Life was both terrifying and confusing. In some ways I’m surprised that my four
siblings and I survived childhood at all.

As each of us grew up and began taking high school and college psychology courses we
each started to understand. She was mentally ill, but it would be decades before her
illness was fully clarified.She suffers from the difficult disease known as Schizoaffective Disorder Bipolar Type. It is a combination of Schizophrenia and Bipolar Disorder. The two competing diseases
make treating the condition a delicate balance. One that has taken a long time to stabilize
as they fuel each other just when it seems one is under control. Those times of control
are unfortunately fleeting.

My mother managed to avoid being treated for most of her life by making sound life
choices that protected her, until they no longer could. It was in her 50s when she was
unable to function with other people or on her own anymore. As with most patients she
used medications with success for a few years, but discontinued them because she felt she
wasn't herself on the drugs.

In her 60s she suffered a series of involuntary commitment stays in mental health
facilities. As her family we were often blamed for not forcing her to get help, but the
reality of the situation was that there was nothing we could do legally. Any time we tried
we put ourselves at risk for violating her freedom. We were threatened with being
charged with trespassing when any of us tried to check in on her. My brother worried
that if he were to be arrested while trying to help her he might lose his government
clearance and his job.

Because of privacy concerns we were not allowed to speak with the nurses or doctors in
charge of her care during inpatient stays. Any information we received had to be given in
a sort of code. Receptionists could tell us a time frame when hearings “might” be held.
If we arrived in time we were invited in to give our account of the state of her health, but
shut out again at the end of the hearing. During one hospital stay a Social Worker took
pity on us and allowed a “hypothetically speaking” conversation with him. He was the
only one to help us during those first few hospitalizations and he let is slip once that he’d
never met another patient who was so articulate that she made him believe her.
We felt hopeless. Hospitalizations were painfully short. The medications rarely hit her
blood stream before discharge. Often a court order would be obtained to force her into
taking medicine, but after a few doses she would be released with “mandatory” outpatient
care. “Mandatory,” meaning that she had to promise to go, but there were no
consequences if she chose not to go. So she didn’t. We tried to inform the medical staff
of important details of her mental state, but the only avenue was writing long letters to
the physicians, dropping them off at the front desk and praying it made it to someone
who would read it and act appropriately. We were putting our mother’s life in the hands
of the written word.

Eventually things got worse. For me, it was like watching a car drive slowly off a bridge.
You can’t stop its forward progression, but you can’t take your eyes off the tragedy
unfolding. It was only when my mother attempted to take four children from a bus stop
across the street from her home that we were able to convince her she had to consent to
treatment or face jail time. This was the first time I had to witness her being shackled by
police after waiting eighteen hours for placement in a facility. That time was mostly spent
attempting to hold her back from attacking the medical staff because they quickly became incorporated into her delusions. What I hated most about that day is that I missed my
daughter’s Kindergarten graduation to be there for my mom. And my mother hated me
for it.

A year later I was preparing a petition to sue for Guardianship and Conservatorship. The
legal process was fairly easy. The emotional process was not. Standing in front of a
judge I had to attest that she was so incapable of making decisions that he needed to
revoke her right to vote, the privilege of driving a car, handle her own money, decide
where to live or what medical treatment she should receive. I went through the whole
process without the benefit of a lawyer representing me because any penny spent was a
penny less to help pay for her medical care.

I’ve been her Guardian and Conservator for nineteen months now. Her health is
stabilizing, but that hasn’t been easy. After several hospitalizations she’s finally out of
constant crisis mode. However, because cheap drugs were used before she became
eligible for Medicare she suffers from permanent Parkinson’s Disease-like symptoms.
This is known as the condition called Tardive Dyskinesia. The use of Haldol is common
in psychiatric patients, but 60% of users develop this condition according to NAMI. The
overwhelming majority are women.

My mother is 66 and can no longer bathe herself or be trusted to walk out of her Assisted
Living Facility unaccompanied. When I look back and think of how she was still able to
drive a car only 2 years ago I weep. The medication makes it difficult for her to do basic
daily living activities. Without the medication she is a danger to herself and others. I
live with a constant internal battle. If I hadn’t filled her medications and demanded she
take them she wouldn’t be as physically sick and she is now. If I hadn’t filled the
prescriptions then she might have hurt herself, someone else or died during a psychotic
episode. There were simply no good choices, but I hate myself for being the cause of her
present difficulties.

I’ve spent the last several years trying to find someone to listen. I’ve contacted reporters,
elected officials, Social Services, advocacy groups and many departments in the Virginia
Government with little success. Mental Health isn’t a priority. Even as the mass shooting
happened at Virginia Tech in 2006 then Governor Tim Kaine cut funding for mental
health services, ensuring shorter hospital stays and more going without needed mental
health care. How different would things have been if funding had been in place to keep
the gunman in the hospital just a little longer to ensure he was stable before discharge?
So often it seems the public at large dismisses mental health issues as the result of lack of
moral character or bad parenting and other excuses that let society at large pass the
responsibility to the person who cannot care for herself. A mentally ill person does not  not
choose to be sick any more than a person chooses to suffer from cancer, broken bones or
infections.

My mother and so many like her deserve better.

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.