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...