Time For a National Discussion on Mental Health

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

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

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

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

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

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

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

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

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

School Shooting Tragedy: Could it have been prevented?

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

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

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

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

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

Update On Mom's Health Dec 2012

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

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

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

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

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

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

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

Fun With Real Estate

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

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

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

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

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

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

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

Anybody know where I can get some Calgon?

Pardon Me While I Steal Some Sleep...

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

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

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

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

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

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

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

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

And it Continues...

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

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

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

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

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

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

The Never Ending Battle...

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

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

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

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

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

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

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

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

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

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

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

Why I feel Nauseated at Lunch Time

One of the consequences of being my mom's guardian and conservator is watching her eat.  When she was still living at her home I started skipping meals as I was worried I would upchuck watching her eat.  It isn't her fault.  She's shaky and it's just part of getting old, but it's a bit annoying at times.  Especially since she tends to pick the messiest meals.

I've gotten to the point that virtually all stomach, eating and drinking sounds drive me batty.  My husband even looks like he might burp and I'm giving him the stink-eye.  I realized my lack of forcing proper table manners in my kids so I'm making up for lost time.  I especially hate those horrible Aleeve commercials where they include the sound of actors swallowing Tylenol.  Really, is that necessary Aleeve?  I think we can figure out they've swallowed the pills without the sound!

Today's meal was at a certain "Mexican" restaurant.  She chose something that resembled an enchilada.  I usually get her a quesadilla since it's much easier for her to eat, but she was insistent.  Of course she couldn't even break it up so I tried to spork it to death.  I was mildly successful.  The scene, that followed, of melted cheese attached at various points made me excuse myself to the restroom for a short while.  I ended up spork-feeding my mother so she could at least eat something.  Clearly I won't be eating at that place for a long long time.

Now, since I do need to lose weight I really should hang around her more often, but I think I'll try running instead.  Or maybe starvation.

House for Sale

Well the title says it all, the house is finally on the market.  It took exhausting work the last few months, but we managed to paint all paintable surfaces, repair as much as we could and refinish the floors.  I found out I'm handy with a belt sander, which is something I never thought I have to say.  The last few weeks were probably the most frustrating, but we're done and now it's a waiting game.

There have been 4 showings since it went on the market 6 days ago and another one scheduled for tonight.  Unfortunately no one seems to like the kitchen and can't see past that.  It's dated I agree.  It makes me feel like all the work that I put into it was pointless.  Although the dozens of things that were wrong with it just a few months ago haven't been mentioned so I guess we did a good enough job.  Here's hoping that one of these potential buyers see some potential and make a bid.  I'm actually surprised the kitchen is an issue.  Yes it does need work, but it's 4 times the size of my kitchen.  I thought the sheer size of it would allow people to overlook appliances and cabinet doors.

I'd love to just be done with this house.  I know I'll be sad when it is gone, but it's a necessary evil.  I'd like to think it will help me get rid of some of the demons following me since childhood, but you can never really get rid of such things, can you?

I took three weeks off from seeing my mom in order to finish the house.  I went in to the ALF last Tuesday just to visit.  I knew she'd be long overdue for her nails to be clipped and she had been begging me for some time to shave her legs.  When I arrived she was actually socializing with the other women there (well watching TV with them, but that's a huge step).  I don't think she left her room outside of meals and medical stuff so I was really excited to see her out of her room for once.  She seemed in good spirits and was even in the middle of reading Pride and Prejudice.  That is one book she asked me numerous times over the years to buy her.  By the time she left her house she had 5 copies.  I gave them away since she was refusing to read, but then she begged for another copy.  My older sister bought her one for her birthday and it sat under her dresser until recently.   It was really nice seeing her reading again.  It was like someone rolled the clock back 10 years.

But as with everything it doesn't last long.  I saw her again on Thursday to take her to the eye doctor.  She was skittish, had trouble remembering much of anything and couldn't follow the simple commands of the eye doctor when she was checking her eyes.  I found out that day her psyche nurse had called her psychiatrist to up her dose of anti-depressants, but they weren't started until Friday morning.  On Friday morning she was going in for a teeth cleaning and was horribly nervous.  I did have my daughter with me both days (she was home sick from school and I couldn't cancel the appointments) so it's possible that's all it was, but it's sad.  I really wish those good days were more often and the bad days would disappear.

She called today frantic, but not really frantic about anything in particular.  She said I said "we'll see what happens," and after thinking about it over the weekend she's horribly nervous about what I was talking about.  It was probably about the house.  I can't even remember.  Maybe if I just don't see her for long periods of time she'll be calmer.  Maybe...

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.

Do You Hear That Cracking Sound...

I think I'm about at my wits end with all this work.  It just seems like the more I get done the more I have left to do.  I wish I had known how much work this all would be when I filed the petition.  I probably would have done it anyway since that's what you do for family.  Still it would have nice to be a bit prepared for all of this.

To back track for you all who don't know me in real life (or Facebook life) my mother was able to be placed on the Gero Psyche ward on Friday afternoon.  It was such a huge relief that she wasn't going to spend the weekend in the ER waiting for placement on Monday.  I spent Friday evening sleeping off the horrible allergy headache I developed and then went to mom's house to paint for 8 hours, alone.  I instructed my husband, who had a rare day off, to take the kids to as many fun things as possible.  They went go-karting, bowling and had pizza for dinner.  I'm glad they were able to get so many fun things done in one day, but a huge part of me really wanted to do it all with them.  It seems really unfair that my family is the one who has to make the sacrifices to get my mom's work done.  But it has to be done.  The sooner the house is on the market the sooner my kids get their mom back.  

I spent today visiting briefly with my mom, taking paperwork to her social worker and taking 3 trips back and forth between the court and the bank in an attempt to get the quitclaim deed signed, notarized and submitted.  I was not successful in my attempts. Tomorrow I have to be at the hospital at 8am for mom's Temporary Detainment Order Hearing (TDO).  The doctor expects her to stay till Friday.  However the social worker said that was because my mother wasn't hearing any voices.  I spent about 15 minutes talking with my mom (okay talking TO my mom) and she mentioned her friend "Will" admitted to her he was trying to hurt her and he wasn't "of God" and practiced witchcraft.  If you remember from previous posts he is her new imaginary friend who advises her on living choices.  She's clearly hearing voices.  And for a good portion of our visit she blankly stared.  I had to shake her arm a few times before she resumed talking.  

There's some things that you just wish you could unsee.  

So tomorrow I will wait for the hearing.  I'll be skipping my doctor's appointment that I desperately need for my worsening asthma so I can be there for her.  I think I've crossed the line between trying to help and sending myself to an early grave.  

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...

Oh, Thank You But I Don't Need a Donut, Medicare.

So, my mom hit the infamous Medicare donut hole this month.  Whose idea is this anyway?  If I find out I'll send her to live with him/her when her meds run out.  Although her meds won't run out.  I'll just have to do some creative negotiating of payments with the pharmacy.

I'm getting pretty good at payment plans.  I avoid them as much as I can, but now I have to use them.  Mom has payment plans with two hospitals, a dentist, a contractor and a credit card company.  That's a lot to keep track of (plus my own bills to figure out how to pay.  I often forget to pay mine entirely).  But a relative was nice enough to loan her enough to pay off two of the balances so that eases up a bit of brain space for me.

Next month is go time for mom's house.  The house will be on the market by the end of April ready or not.  I have given the final notice to family, who are using the house as their personal storage facility, that their things will be thrown away if not removed in the next week.  I'm done with the stress of it.  I plan on scrubbing the house down myself next week and start painting.  Now the kid with the severe asthma really shouldn't be the one painting, but c'est la vie.  So I'll schedule my week in bed for May and push through as best I can.

The med tech at my mother's ALS mentioned to me the other day that she heard my mom talking to herself.  An immediately count-down calendar started ticking in my head.  That day I walked up to mom's room and heard her mumbling to herself.  Today at her primary care doctor visit she told him she was seeing people.  She said she knew they weren't real so she refused to speak to them.  Then the whole drive back to her ALS she mumbled quietly to herself (she called it "speaking in tongues" when I was a kid.  I would call it "speaking without a tongue" for a more poetic and accurate description).  She was enrolled in an Observation and Assessment program through Medicare to hopefully keep her out of the hospital this time, but I'm not optimistic.

She's had severe shaking the past two months (she's having trouble eating and is rapidly losing weight because of it) and her primary care physician isn't sure if she has developed Parkinson's Disease (just what she needs) or if it's the medication she was on until November last year.  He said if it's the meds it may go away or be permanent.  There has got to be a way to catch a break here at some point.  My mother will be seeing a neurologist to figure out what's going on there.  Her new psychiatrist (who I'm really not fond of already) was adjusting her Zyprexa lower to see if it was causing the shaking.  Lowering the dose only seemed to make it worse.  And now she's complaining of panic attacks and trouble breathing.  She sees the psychiatrist next week so we'll see what he says (and if he remembers she's his patient this time).

So that little calendar in my head is ticking away.  I'm sure if a miracle doesn't happen she'll be back in the hospital in the next two months.  Maybe Mother's Day?  Maybe that can be my vacation? (See horrible daughter explanation in previous post).

A Good Daughter?

I do a lot for my mom.  Probably more than I should.  I seem to be lacking the all important "self preservation" gene.  But I guess that's me.

I often hear about what a good daughter I am.  I know that's high praise.  I may seem "good" on the outside, but there's a raging fight inside me.  The part that wants to do everything I can to make things better is often battling the part that wants it to be over.

A few days ago I went to visit my mother.  I was nearby and she'd been complaining of trouble breathing over the weekend.  The facility and my sister were sure it was anxiety, but I figured I might as well make sure.  She was a shaking mess when I arrived.  When the Med Tech took her blood pressure the diastolic number was normal, but the systolic was almost 130!  And her heart rate was 125!  I argued with my mom about taking her to a doctor to get checked out and she was refusing. Thankfully the cuff was one of those automatic kinds and was reading incorrectly.  So after a manual cuff was brought in her blood pressure was measuring normal and her heart rate seemed normal (she was flinching too much to get an accurate count).  The psychiatrist on call decided her Zyprexa was lowered a bit too much on her last visit and he increased the dose to what it was a month ago.  She seemed better when I saw her the next day and the shaking was greatly reduced.

But through all that I felt incredible guilt because of the thoughts running through my head.  A huge section of my brain was hopeful that maybe this would be the end.  Maybe her suffering would be over and I'd finally have time for my kids.  I wouldn't have to deal with anymore ALS procedures or arguing with doctors over the right care or the right paperwork.  No more reports to APS or dealing with audits from the lawyer.  No more begging family to remove their things from her home and getting very little help in preparing it for sale.  If that house is just my inheritance I'd give it away.

Below is the picture of the "Tree of Life" my mother painted on the wall in the formal livingroom in her house.  She initially drew it with pastels.  When it faded she repainted it in ink.  Part of me hates to paint this over because it's part of my childhood and one of the few times I remember her being truly creative.



Most of my childhood memories of her are quite painful.  Painting this over feels a bit like erasing all the good that existed.

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.  

Sell, Sell, Sell!!!

Things are starting to move.  I found my mother a new doctor who specializes in Gero Psyche and I'm moving forward with the sale of her house.  The house is a thorn in my side that I would love to remove.  Permanently!

The biggest obstacle has been what to do with a lifetime of possessions that no one seems to want.  My mother was convinced everything in the house was worth a lot.  Anytime she talks about them she says, "they're worth billions, I tell ya. Billions!"  Well maybe in 3012, but in 2012 it seems like they aren't worth a whole lot.

I called an antique shop to have them come out and take a look.  He paid me about $100 and took a handful of items which left me one empty corner.  He suggested talking with another antique shop.  After a 5 minute phone call with the other shop owner I felt my Irish blood boil and I promptly hung up on him.  My good friend, Google, led me to an auction house in Virginia Beach who filled a 15 foot truck with household items and left me with some empty floor space finally. The auction is at the end of this month so we'll see what the items sell for.  There is still a room of furniture that I can't seem to give away. I can't even donate it! Firewood anyone?

It makes me happy and sad all at the same time.  But I have to get rid of these things.  And they are just things.

My mom is more aware these days and has been asking about her house.  It makes it really hard for me to say "I sold or gave away your things."  I know it's hard for her to hear too.  But she can't keep a houseful of things in her tiny room and there's not enough extra money to pay for a storage unit.  It's simply what has to be done.

So on to the repairs.  I've had two conflicting quotes for the repairs to the foundation so I called in a home inspector on a suggestion by auction house guy.  The verdict was better than I expected.  I am getting one last quote on Monday and then I will work on the financing part of the equation.  Because of the bad housing market it has been suggested I fix up the house prior to putting it on the market so I'll get more money for it and hopefully it will sell faster.

And one little side note.  I am working on spacing things out with my mom and reducing the work load of at least one of my volunteer jobs.  I started taking Yoga classes and I feel a whole lot better.  I just need to take time for me.  It's hard to think of that when someone needs you so much, but if I break down from the stress I'm no good to anyone.

If I say that over and over again in my head I'll eventually believe it.

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.