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.

Moving On...

Today I got the final call from my mother's case manager at the Chesapeake CSB.  She's been a constant in our lives for the past year and a half or so.  It's a bit bitter sweet.  I will miss having that connection, but am a bit glad to be out of the excessive red tape fest that is any agency you deal with.  They've been wonderful to deal with, but the annoying rules and funding cut offs are more stressful than they are help.  It's hard when you see people trying to help, but are prevented by the swipe of one little pen on a state budget.

I'm hoping I'll be able to change that.  Whenever I can fit "explaining to politicians how they are screwing us up" into my schedule I suggest everyone brace themselves.  I'm sure it will be the scream heard round the world.

We have to move on since she has insurance now and she is seeing a doctor board certified in Gero Psyche.  I'm sad, but happy that my mother is doing so much better.  I'm hoping all the hospitalizations are behind us and the conversations are more lucid than not.  We will miss Dr Q, Tonya and Susan.  Without them I'm sure we wouldn't have survived as long as we did through this process.

I did have one interesting email today.  I wrote an email to Gov McDonnell back in December or January I think (these months are just blending together for me).  I think it ACTUALLY got read.  And they sent me a letter that looked like it took more than 2 minutes to write, unlike the "fill in the constituent's issue" form letter I got from Sen Warner.  Tell me what you think of it...

Governor McDonnell has asked me to respond to your email describing the delay challenges your family faced in finding a Gero-Psych inpatient bed for your 65 year-old mother with a diagnosis of Schizoaffective Disorder.

Governor McDonnell and I appreciate your concern about having adequate inpatient mental health care services as the proportion of older adults’ population increases.  Thank you for providing the details of your concern with the assistance you mother received in your local community.  I encourage you to continue to communicate with your local Community Services Board for support.  I understand obtaining guardianship was a positive step forward for your mother.

I asked a representative of the Virginia Department of Behavioral Health and Development Services (DBHDS) to contact the Southside Geropsychiatic Services (SGS) sponsored by the Community Services Boards servicing Chesapeake, Norfolk, Portsmouth, Virginia Beach and Western Tidewater.  They provide free consultations to family or professional caregivers concerning behaviors which might put senior adults at risk of needing psychiatric hospitalization.  SGS can visit the home or facility at no charge and offer suggestion which can help to improve the situation and avoid unnecessary psychiatric hospitalization.  For further information on SGS, you can contact Kathy O’Connor.   DBHDS also recommended that you contact Marsha Obremski at The Pavilion at Williamsburg Place on their current planning for inpatient mental health services for older adult admissions.

Thank you for writing and for bringing your family’s concerns to our attention.  I wish you and your mother every success in obtaining mental health treatment and care that is responsive to her needs.

William A. Hazel, Jr., M.D.

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia  23219

Now I'm not completely sure Mr Hazel understood the issue of the need for more inpatient beds and more resources for geriatric patients who suffer from mental illness.  But at least he cared enough to write me back and include some details from my email.  I wrote this after my mother spent 3 days in an ER waiting for one of only 6 Gero Psyche beds to open up (it was one of my more angry, less eloquent emails).  Maybe these people he refers to will be able to provide me with some help or guidance.  Maybe they'll have all the answers I've been searching for over the past 18 months or so.  Did I find the Holy Grail of Mental Health?  Hmmm, probably not, but getting someone/anyone to listen is a step towards making a difference.  And I will change things because that's what I do.  

The one thing I think everyone on this Earth needs to understand that change doesn't happen because you want it to happen.  Change happens because you get up and do something.  It isn't about supporting a candidate, voting (although incredibly important and your civic duty) or voicing your opinions in your social circles.  Change happens because there was a person who took action.  

Most of the time one person can only chip small hills out of the way, but without that one person nothing moves.  

Who Really Is the One Who Is Crazy?

My mother has been decompensating over the past two months.  Her mental state has been slowly declining and her psychiatrist has said he cannot do anything for her on an outpatient basis.  She needs to be hospitalized. So at her appointment we came up with a plan on what to do if her delusions did not improve.  It  included the old standby of calling Emergency Services of whichever city she is physically in.

Those of you who have been through this process you know that having someone hospitalized for mental health reasons is never an easy process.  If things aren't emergent I look at my schedule and figure out a time when I have two full days to devote to just the process of getting her admitted to a hospital.

It's supposed to really go like this.

Contact Emergency Services and explain the situation
Emergency Services comes out and evaluates the patient
Emergency Services decides patient needs to be hospitalized and calls to find a hospital bed that's available
Patient is usually held in an emergency room or magistrate's office until the bed is available
When a bed becomes available the patient is transported by the Sheriff's office to the facility to receive treatment.

But it never works that way.  Usually my mother ends up needing to be medically cleared before the mental state can be evaluated.  Each time it takes about 24 hours or more to complete this process.  It's aggravating and time wasting and down right painful to go through.  It usually ends with watching my mother be shackled and put in the back of a police car.  Never something you want to see.

This time was more painful than usual.  Well, I shouldn't say "was" because it's still ongoing.  And we passed the 24 hour mark 7 hours ago.

On Saturday my mother was acting very strange when I visited her so I decided it was time to put her in the hospital.  She was saying her doctor and the people who work at the ALS she lives at were trying to kill her.  She was whispering to herself and acted clearly confused at what was going on.  She wasn't giving the staff any trouble, but I've seen these signs before and I know it will only get worse.  I had my kids with me so I couldn't do anything right then.  I decided to wait till the next day to start the process.  It was also so I could get a good night's sleep before the grueling ordeal begins.

I called on Sunday at noon and was told by the very unsupportive man at the Norfolk CSB that they would come to evaluate my mother, but to not bet they would believe she needs hospitalization.  I was told I needed to hurry to her ALS because I'd better be there when they got there.  There was no promise of a time frame.  I hurried.  When I told my mother someone would be coming to evaluate her she gave me this horrible look and gestured to hit me.  At 4pm I still had not heard from the NCSB so I called to see what was going on.  The woman answering told me that she'd told me several times already that my mother's doctor wouldn't let her go to the hospital.  I told her I was sure she was confused as to who I was (I hadn't even given her my mother's name) and it took a bit to convince her that yes, she had confused my mother with another patient.  I was informed they were not coming because only the facility could call and invite her in.  Of course since the facility didn't witness her behavior if they did call the concern would be dismissed.  I informed her that she embodied everything that was wrong with the mental health system in Virginia.  It clearly sounded like it wasn't the first time she'd heard that.

So, with no other real option, I drove her to the emergency room at Norfolk General.   I was met with a wonderful nursing staff, but a doctor who informed me that for geriatric psyche patients they can only be admitted to a facility 8 to 5 Monday through Friday.  This was Sunday.  I was told I should take her home.  To do what, I have no idea.  But I've been around the block a few times and I know that if you go home and come back the next day you only increase the cost and lose your place in line.  So I refused.  The Norfolk CSB informed me I should not have come and that I should have done it their way (refusing to evaluate her at all is apparently "their way.")  I was informed that the CSB worker at the hospital was present during my "many phone calls" and he knows I was told to talk with her doctor first.  I must be falling asleep and calling these people because I remember only speaking with them on two occasions and I don't remember them telling me to call her doctor ever being part of the conversation.  He said they had a big file on her and then later said they seemed to have no paperwork on her.

We were informed she would be admitted if there was a bed in the morning and we could avoid the temporary detainment order (TDO) which would save a step.  Then in the morning we were informed that she would have to be reevaluated and placed under TDO.  Seems no one at the Norfolk CSB has any clue.  NO wonder I've been told to avoid them at all costs.

Since she has insurance and we have guardianship I asked the doctors if we could just avoid even dealing with the CSB, but it isn't possible.  It's the way things are run.  And because of budget cuts there are less and less psychiatric beds available and longer wait times in the Emergency Room waiting for one to come up.

So my mother is waiting in the emergency room waiting for a bed.  It is 730pm on Monday and this whole ordeal started Sunday at noon.  There is no end in sight and the nurse informed me that it would at least be a couple of days.  Thankfully the hospital did bring a psychiatrist to see her and changed her meds so it's not like she's floating.  But, she also isn't receiving the care she would receive in a psychiatric ward.

There was a man with Alzheimer's Disease waiting in the ER there as well.  His wife said they'd been there since Friday evening.  At 4pm Monday the hospital was promising him a bed, but it hadn't happened by the time I left.

With the aging population we have more of this to look forward to.  God help us all.