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.

Newsflash!

I have something to tell the world that I think will both shock and awe.  I think you will find that I've figured out the impossible.

Someone who is actively having delusions and is hearing voices or seeing people who aren't real don't know that those voices or people aren't real!

I've said it!  The cat's out of the bag!  You can bask in my greatness now.

I can't tell you how many people over the past several weeks have asked my mother if she is hearing voices or seeing people who aren't real.  When she says no they will often proclaim to me she isn't hearing voices or seeing people who aren't real and she is perfectly fine.  Of course I ask her things like "did you talk to Will today?" and she readily admits she's talking with him regularly (see this post introducing Will if you don't know who he is).  So they bury her illness in semantics.  A few of these people are doctors, nurses and social workers working in the mental health care field and really should know better.  I'm guessing they just don't want to see it.  This is why it is so important for family members to be there as much as they can for their loved one.  I know it's not possible for every family, but if no one is there to advocate people fail to get the care they desperately need because of sentence structure and word choice (good communication saves lives, people!).

The sad part is that those technicalities are there because there are so few funds available those working in the mental health field have to weed out people who are not in an absolute crisis "I'm going to kill myself or others" state. Those who need inpatient care, but aren't seconds away from ending someone's life fall by the wayside.  And they get sicker and sicker until they finally end up in that state.  Then they can get help, but often it's too late.  And you waste a lot of resources that wouldn't have been needed had the person received help much earlier.

It's all about trying to cut down on inpatient services in favor of community based services without actually making sure those community based services are adequate for the population it serves. Not all treatment can happen on an outpatient basis and our ERs are quickly becoming a slow moving weigh station for many people who need help with substance abuse and mental health care.  If you really think about it, who do you want to receive the best care: the guy with a clogged artery or the guy with schizophrenia and a gun rack?  In reality the guy with the clogged artery will receive the care while the schizophrenic will be sent home and we all know how that turns out.

Today my mother had an appointment with a Neurologist to find some answers about her constant tremors.  Bottom line:  they are caused by the psyche medication she's been on in the past (and possibly present) and it is permanent.  She has Medication Induced Parkinsonism.  The doctor told me a person could take these drugs for a short time and then nothing for 30 years and still develop this.  And when I think of all those times I took my mom to the doctor for her Haldol shot or filled her Trilafon script or filled her medication dispensers I hate myself.  I know on an intellectual level it isn't my fault.  I was trying to help and I wasn't the one making the medical decisions.  But still...

Last week my mom visited with her psychiatrist and was telling him all about how her psyche nurse was discussing my care with her and I didn't like it so I put my mom in the hospital.  The doctor asked her if I was his patient and she said I was.  The sad part is, if all that were true I would be the last to know.

Communicating Through Mud: it's not just for kids anymore!

I haven't shared a funny (ish) blog post in a while and since schizophrenia tries it's hardest to take the joy out of most things in life I feel it's long overdue.  So I will share with you what it feels like to be me these days.

Now I have a BA in Communication.  I feel like I'm a pretty good communicator.  I spend a great deal of time choosing my words carefully so that the impact I want conveys to the other party.  I help run support group meetings for breastfeeding moms, a delicate job in itself and I feel like I do a pretty good job.  What usually gets me in trouble is over analyzing what people say.  I remember the first meeting I led.  The wonderful person who trained me said "you did a great job! Gave lots of information!"  Now at first I felt proud that I had done a good job.  But then I analyzed...

and analyzed...

and analyzed...

and somehow I started to wonder if she really meant I did do a good job.  Did I talk to much?  Sounded too expertish? Oh My God I'm a FREAKING FAILURE!  THEY'RE GOING TO NEVER LET ME BACK IN THAT ROOM AGAIN!!!

Part of me thinks it's an asset to analyze so much.  But then I realize how much I'm reading into people's words or body language.  So people become big puzzles I have to put together in my head.  I have to hide when people discover I'm staring.  And since I can't open up anyone's brain and read her thoughts I never know for sure if I'm reading someone the right way.  Then I want to just avoid people because cats are just easier to read.  Yes I want to be THAT cat lady.  Life would be simple, yet full of fleas.

I manage okay.  I get through life being able to at least communicate a little.  I think at least half of what I say makes sense to at least half of people.  But I'm having my doubts on my abilities to even handle basic communication.  Recently I had a conversation with my daughter's teacher which started with me trying to find out why she was struggling in school and ended with me sounding like a horrible bigot in the teacher's eyes.  Is my brain going?  Did my unclipped tongue tie decide that now it was going to exact revenge on my speaking abilities?  Am I saying something different than what my brain thinks it's saying?  Did someone install a speech changer?  Am I getting dementia in my 30's?  Am I paranoid?  Why do I hear laughing?   Ahhhhhhhh!

But I calm down, drink some wine and I feel like I just overreacted.  Obviously I can speak and dementia in your 30's is unheard of, right?

Then cue the communication with my mother's assisted living facility and the doctors. I'm starting to feel like I'm talking through a thick wall of mud.  This was a conversation a few months ago I had with the director of nursing.

Me: "since we're having such a problem with the doctors signing orders is there something I can bring like a med sheet they can sign."

Her: "no, there's no such thing."

Me: "can you give me anything to make this easier?  I feel like I can't explain to them what you want."

Her: "no, there's nothing.  I'm just going to have to treat these doctors like children because they won't do their jobs."

So fast forward to today with the doctor.

me: "I know it's an electronic prescription, but I need something for the assisted living facility to honor the change in dosage.  Can you write something?"

Dr: "all right, I'll do it this time but next time they need to send you with a copy of the physician order sheets so I can just make the change and sign it.  Ask for it a day or two in advance so they can get it together and bring it when you come next time."

Me: "okay, I'll get them to do that, thank you.  Oh you didn't write the diagnosis on the prescription..." Dr walking into another patient's room

Me (to the nurse) "can you write the diagnosis on here.  They are going to hassle me when I get back."

Nurse: "no, they already know what it's for."

Me: (back at the facility) " here's the med change."

Her: "geez okay he needed to put the diagnosis on here."

Me: "I know. I asked and they said you had it.  He also said he needs me to bring the med orders or something with me next time."

Her: "med orders?  There's no such thing."

Me: "well, isn't it one of those sheets on your desk."

Her: "no, this is something else.  Did you get the physician order sheets before you left.(shows me what looks like the identical sheets I pointed to on her desk)."

Me: "uh no, I think that's what he wants.  You've never given me any."

her: "I've given them to you every time."

Me: "no, I think I would remember that.  I didn't know I should ask for it."

Her: "yes you should get a copy of the physician order sheet every time you take your mom to the doctor.  But I know I've done that for you before."

Me: "I can assure you I've never gotten one.  Maybe my sister has gotten one when she's taken our mom to the doctor, but I didn't know I was supposed to get it (didn't mention I felt like I had asked for the sheet before and was turned down)"

So I feel like there is some special language these people are speaking and I feel like I understand what they are saying, but when I ask for things not using their special language they seem to have no idea what I'm talking about.  When I say "med orders" it doesn't mean "physician orders" to them and I'm left not understanding why that isn't close enough.  Why do I feel like I'm in Spain again after 4 years of spanish classes trying to order ice cream in spanish and being looked at like I'm speaking feline?

Does anyone know if Rosetta Stone has a course in speaking "assisted livingese?"  I clearly need an interpreter or a basic course in "Annoying terms in the medical field you must get right or they will think you are a moron."  Maybe I can start writing on my arm when they talk so I can keep careful notes with exact terms.  Or bring in a stenographer.  Or maybe go to medical school so I understand it all.  Or maybe......

Does anyone have a spare straight jacket I could borrow?

What We Have Here Is a Failure to Communicate

I thought today I would share with you all what a typical phone call is like for me these days.

Me:  Hi I'm calling on behalf of my mother.  She is an incapacitated adult and I am her guardian and conservator.  I need to check on the status of her insurance/payment/bill etc.

Them:  Huh?

Me:  I am calling on behalf of my mother.  I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.

Them:  So, did she die?

Me:  No, she is very much alive.

Them:  Can I talk with her?

Me:  No, she is an incapacitated adult.  She cannot speak for herself.

Them:  Just put her on the phone.

Me:  Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.

Them:  Well, we don't recognize court documents.

Me:  Are you serious?

Them:  Yes.

Me:  Okaaaaayy, so what am I supposed to do to take care of this for her?  Can I email you a copy of the papers.

Them:  You can fax or mail the originals to us to look at.  We will need a certified copy of her death certificate.

Me:  She's still alive!

Them: Oh, well then just fax or mail the court documents for us to look at.

Me: Ok, I just faxed them.  Can you verify you've received them?

Them:  I can give you no information.  It takes 14 days to process the fax if we did indeed receive it.  Call back in 14 days and maybe we can talk with you then.

Me:  14 days!  Are you serious?

Them: Yes.

Me:  Oh geez.  Well thank you for your....help.

Them:  No problem.  Did we help you to your satisfaction today?

Me:  Um, is that a trick question?  I think the answer is no.

Them:  Thank you for calling blah blah blah.  Have a nice day!

And scene.

Makes me long for the days when all my calls were augmented by a screaming two year old at my feet.  Ah, those were the days....