Time For a National Discussion on Mental Health

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

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

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

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

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

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

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

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

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

Pardon Me While I Steal Some Sleep...

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

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

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

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

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

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

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

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

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.

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.

The Dividing Line

Tomorrow is the expected discharge day for my mom's most recent hospitalization.  This is the same team that worked with her in November and I felt so good about her being treated there.  This time the future looks grim.

We've had to decide which delusions we laugh off and which ones we race her to the ER for. There isn't talk anymore of "controlling the delusions."  That battle is already lost.  Schizoaffective Disorder simply refuses to play by the rules.

My mother has been in Gero Psyche for a week now.  I saw her on Monday where she appeared groggy and admitted to hearing voices.  On Tuesday I visited her and she seemed a bit more animated, but still wouldn't get out of bed.  On Wednesday was her TDO hearing that was rescheduled twice.  I didn't attend.  This is the first hearing she's had where there wasn't at least one of her children at the hearing.  I've heard it didn't go well and what was expected to be a voluntary commitment ended up with a scene, and involuntary commitment and an immediate med change.  I've yet to find out what happened and part of me really doesn't want to know.

Back in November I allowed myself to hope that she could be normal again.  When she left the hospital back then part of me was angry for starting to clear out her house.  I had hope she would one day be able to live on her own again.  I guess maybe that's what's been keeping me going through all this.  That one day I'd be able to "fix" her if I just tried a little harder. If I prayed harder, if I worked a little more, if I found the right doctor, if I just made the right choice I could change things. Obviously this is a very foolish notion that I need to let go of.  She is never going to be "fixed."  I'll never have my mom.  I've always felt she has been lurking under there my whole life, screaming to be let out.  Now I have to wonder if she ever existed.

The discussion this week has been about whether we as a family should sign a "do not resuscitate (DNR)" or a "do not intubate (DNI)" order for her.  I didn't think that's a decision I would be thinking of so soon.  I had to call all my siblings and ask their opinions, taking a few moments to grieve in between calls and begging in my head for someone else to make this decision.  The results were two for, two against and one on the fence for the DNR.  Unanimous for a DNI.  One of my siblings, in objecting to the DNR, felt that I might feel guilty if I sign the DNR and she has a heart attack.  As if the guilt of ending life support would somehow be easier than getting a call that her heart stopped.  I'll have crushing guilt either way.  This isn't a choice.  It's a nightmare.

I remember as a kid I always felt I would never euthanize a pet because it was cruel.  Then we did everything we could do to save our beloved cat Piglet.  In the end I could see the pain in his eyes and I saw that I didn't help him by having the vet take heroic measures.  I made him miserable.  We had several more cats who died after long and painful illnesses.  And I figured out that euthanasia is not cruel.  The heroic measures were what was cruel.  Not that I would euthanize my mom - even if I could.  It's just that she's suffering so much.  I can't imagine wanting to prolong that by artificial means, even if those artificial means are relatively minor and basic in most cases.

Today I spoke with my mom's mom.  There was one thing that echoed long after we ended the call.  She said she felt she should have done more for my mother when my mom was younger.  Maybe she could have said something or gotten help for her or convinced my dad she needed help.  This is something I've been wrestling with over the years.  I have been angry that no one did anything to help her.  I felt this horror show we are living in could have been avoided if someone had just done "something" decades ago.  But I've learned a few things.  Sometimes we do more harm when we act than when we don't.

All this was set in motion a long time ago and no matter how many people push against it,  it can't be slowed or stopped.  It's in a constant, steady motion forward.  It's only a matter of time.

Now if Only I Could Predict the Lotto...

Remember my post last month?  The one where I said if things don't change mom will be back in the hospital in two months?  I wrote that blog post on March 21st.  Today is April 18th.  I guess I was off by a month.  I've been frantically trying to get her house ready for sale so I could devote the time she needed from me for a hospital stay, since I predicted it happening sometime in May.  So, this will probably slow things down a bit, but here's hoping other family members pick up the slack enough that I won't fall too far behind.

My mom's delusions have become a bit more vivid recently.  She has a new imaginary friend, Will, that I introduced you to last time.  She's been shaking less, but I was really thinking things were staying the same.  She started having a Psyche Nurse visit her a few weeks ago.  I was hoping this would be what would help keep her out of the hospital.  Clearly that was false hope.

Today I got a call from the Psyche Nurse who had been called in to evaluate her today by the facility (I'm not sure why they called her since they should have called me first, but whatever.  It's not like I'm her Guardian.  Oh wait.  I am.).  When the nurse was on the phone she told me about mom's most recent delusion and it's become a bit more....elaborate.  Now Will is Satan and mom's being attacked by him.  The poor nurse sounded very shaken up by the whole experience.  I hope she doesn't end up with PTSD over the situation.  I mentioned that I was expecting a hospitalization soon if things didn't improve and she indicated to me that we are at that point.  The doctor could do med changes, but since she doesn't have anyone that can watch her closely (her ALS does not provide this service) then that could do more harm than good.

So I contacted her doctor who agreed hospitalization was the best choice at the moment.  Tomorrow morning I'll take her back to Norfolk General and pray there's a Gero Psyche bed available.  Since there are only 6 in the entire Hampton Roads Area (Wikipedia lists the area as having 1.6 million people so only 6 people over the age of 50 can have any kind of mental issue at any given time.  Good luck with that HR), there isn't much chance of a bed being open.   I'm worried we'll be in the ER till Monday.

So if you are a praying person please pray for health, skill and a slow day in the ER.   I'll take chants, vibes, quirky memes or anything else that could possibly help.

Oh and if anyone knows any politician at all please smack him or her over the head and tell them to get to work!  Or send me his/her personal cell number.  I'll put my mom on the phone.

Nice to Meet You, Will

I'd like to introduce my mother's new imaginary friend, Will.  Will is my mother's trusted adviser on clothing choices, food intake and gestures.  Now if I can convince him to share Guardian duties I can get a day off.  

So it's been a rough day.  It started with picking my mom up to take her to her psychiatrist.  She spent the car ride there whispering to herself, so already not good.  Upon getting there the doctor said he had looked over the records from VB Psyche, but they couldn't find her chart for his office.  They found a few minutes later, but that doesn't give me a warm fuzzy feeling.  I informed the doctor of her whispering and she proceeded to tell him that she had a "Echanon" (no definition found on dictionary.com so I'll have to take her word for it) in her mouth that allowed her to speak to her friend and a something in her ear that allowed him to hear him.  Then she spoke of yarn like things coming from the floor and trying to bury her.  The yarn-like substance goes away when the lights are turned on.  

So the doctor ordered a pysche nurse to keep tabs on her and left her medication levels the same (they were changed 3 weeks ago so I'm thinking it's a prudent call).  However, he informed me he was dropped by the company that services my mother's Medicare supplemental insurance plan.  I think it probably had to do with a censure he received about keeping poor records for pain patients (where have I heard poor record keeping before?). I wasn't really fond of him, but that leaves us with the only other Gero Psyche doctor I could find in the area.  He treated mom at Chesapeake General when she in the Gero Psyche ward 18 months ago.  It wasn't a good experience.  

Hello Governor!  Whenever you want to make things easier for us peons let us know!

Count down to hospitalization continues...

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.  

Time To Take Action

One of the most important things anyone can do to increase awareness of Mental Health care funding is to make sure our elected officials are aware that it matters to you, the voter.

This goes for anything that you care about: bad roads, making sure mothers can breastfeed in public without being hassled, school funding, vaccination requirements, light rail etc.  The only way to make a difference is to make yourself heard.  So this is a public urging for all of you to tell your elected officials at the State, Local and Federal level what matters to you.

I'm in Virginia and Gov McDonnell just announced his new biannual budget for 2012-2014.  You can read it here.  The part relating to Behavioral Health is on page 6.  It calls for a $30 million increase to the budget, which is not near enough to help everyone who needs it.

So speak up.  Lots of people are counting on you.  If you don't know who your representatives are in the General Assembly here's a link to find out.  And if you need to know who your Federal representatives are click here.

It will take so little of your time, but if enough of us spend that time it will make a difference.

Goodbye 2011! Don't let the door hit you in the butt on your way out!

This is probably the best time of year for me.  The business of Christmas is over with and we ready to put the troubles of the past year behind us and move into the New Year.  Although I am expecting this next year to copy the past two years I will try to remain hopeful that things will change.  Without hope no one would get out of bed.

So here's what I wish for everyone out there for 2012!

I hope our lives find balance and when we have trouble finding it on our own that good friends help us navigate our way back.

I hope that everyone gets the mental health treatment they need regardless of cost.  And remember a good friend is always around the corner when you need him/her.  Sometimes you just have to search a little further and sometimes you never knew who that friend was till the very moment when you needed him/her.

I hope the politicians who decide budgets remember that those who cannot speak for themselves are not invisible.  

I hope everyone reading this takes time for themselves and remembers that they are important.  Everyone makes a difference in this great world we live in.  You matter more than you will ever know.

I hope everyone remembers that the people around you are important too.  Using your turn signal, letting that driver in front of you at the exit ramp, picking up litter in the park or holding that door open for the person carrying so much makes a difference.  Let your love for other people show.  You might just make their day.

When you need a friend, find one.  Someone is always close by. They just have to know they are needed. And someday you might just find that you're the one someone needed.

Reach out to a friend in need.  And listen, just listen.  It is harder than you'd think, but it's more valuable than anything you could buy, borrow or steal.  

Goodbye 2011 and Welcome 2012!