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.