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.

November 2011 Hospitalization Update

Yesterday I wrote a post about all the things that were happening during this attempt to get my mother the inpatient care she needs.  Today thankfully things started moving and she was placed in the Gero Psyche ward at Norfolk General.  It's been a long day, but I was so glad to leave her in the capable hands of this hospital.

From start to finish it took 56 hours to have my mother admitted for treatment.  And I thought the previous times were bad at 24 hours.

I am still very irritated about how the whole thing played out.  I never ever thought I would say this in a million years, but I can't believe how much better the City of Chesapeake is at handling these things that the City of Norfolk.  As the Norfolk police officer said "You're not in Kansas anymore."  Chesapeake seems efficient and streamlined.  Things may be slower than you'd like, but everyone seems to know what's going on.  Norfolk was a what I would call a hot mess.  No one seemed to know what was really going on or how it should go.

Exhausted from Sunday and Monday's events I fell asleep last night and slept for 13 hours.  I headed up to the hospital to spend some time with my mom so she knew we weren't abandoning her.  She was receiving psychiatric care in the ER so at least she wasn't floating.  But she was pretty angry the doctor put her on a medication she didn't like, Zyprexa.  It is the only one that has ever worked for her.  The ones she has been on are really hard on the elderly brain so it was either give her Zyprexa and have her be mad or stick with drugs that slowly make it harder and harder for her to function.

I was informed about noon that she was being placed in the Gero Psyche ward.  It was after 8pm before she finally got there.  In the end she needed to be on Temporary Detainment Order and the Norfolk Police Department had to escort her up the elevator to the ward she is staying in.  I have no idea why they have to do it that way. It wasn't that way in Chesapeake, but whatever.

The sad thing is that because of all the uproar with the Norfolk Community Services Board (they paid an employee for years who didn't show up for work because they never bothered to officially fire her) the people who know how to do their jobs have left.  Funding has been pulled so that other organizations are not available to help.  I've been told that soon the people we worked with this week will all lose their jobs due to budget cuts.  Although they were of little help this time and caused a lot of confusion and aggravation I don't believe cutting more funds and getting rid of more people are going to improve an already impossible situation.

People need to wake up and realize that we can't keep going full speed into a brick wall.  Something has to give.  We either need to raise taxes or just never get sick.  I don't think the latter is a possibility.  There's no money and people need help.

I watched a homeless man in the hospital desperate to keep his leftover chicken safe so that when he was released he'd have something to eat.  This is America!  What does that say about us if we let things like that happen?  The sad part is he will get some help, maybe lots of help, but soon he'll be living on a park bench again not knowing where his next meal will come from.

When I walked my mom to her room the nurse gave me all the instructions for the ward.  Then she asked if our family had a "safe word" we like to use.  Yes my mind went there.  The first word that popped into my head was a type of animal.  My brother said I clearly wasn't up on my secret agent code words.  I've been ordered to brush up on my viewing of "Top Secret."  I'll have to make time for that tomorrow.

Been A Long Time...Long Post

I didn't realize until today that my last update was in May.  I kinda like having this blog as a history of all we've been through.  Maybe it can help others, maybe it's just cheap therapy for me.  At any rate a lot has happened and I have a lot of updating to do.

Back in May my mother was at VBPI.  They ended up keeping her for over a month, only releasing her when funding ran out.  It is completely ridiculous that in this country you can be denied care because of inability to pay. But I digress...

A doctor at the facility determined her unable to care for herself or make decisions regarding her care about a week into her hospitalization.  The logical next step was to file for Guardianship and Conservatorship, but with the lawyer fees running about $5000 just for my lawyer it was an expense I simply couldn't pay.  I considered begging family members for the money, but really, then what?  There would be no money to pay for her care or anything else she needed.  So I decided to file for Guardianship and Conservatorship pro se (legal speak for without a lawyer - I only learned that because they kept calling me that at the court and I had to ask what the heck it meant).  I spent countless hours online and finally discovered this booklet http://www.courts.state.va.us/courtadmin/aoc/cip/programs/gal/adult/guardian_conserv_proceedings.pdf put out by the Virginia Supreme Court.  It made it sound pretty simple, but I was scared to death to try.  I headed up to the Chesapeake Circuit Court to ask the Clerk's office for help, but they directed me to the library across the street.  As luck would have it it was "free law day" at the library and I was able to talk with a lawyer and he assured me I could just follow the booklet and if there were problems the Guardian ad litem would take care of it for me.  Funny fact - I discovered only last week that he was my father's divorce attorney.  How weird is that?

So my mother was still in the hospital as I started writing my petition.  The lawyer suggested getting letters from family members stating they didn't protest so I started asking all the closest relatives to write the letters.  I couldn't find current addresses for my mother's half-siblings so I asked her two full siblings, mother and my siblings to sign the letters.  My aunt was the first to send hers to me and my siblings slowly got theirs done. But my uncle protested.  He didn't understand why she needed a guardian.  I guess since he hadn't seen her since the early 1980s it was a bit of a shock.  But he convinced my grandmother not to sign her letter, either.  Then my uncle suggested he be guardian.  Considering he lives like 10 states away and hasn't seen her in over 30 years that did not sit well with me (and the reason why I had to stop writing my blog so I didn't "tip him off").  I worried I would have to come up with the money for a lawyer in case he chose to fight me.  In the end another lawyer (giving me some free advice) mentioned I only needed to contact 3 relatives (4 siblings = done) and that the court wouldn't really care what a relative thought that lived so far away.  So I filed my petition.  I thought my heart was going to explode it was beating so hard the day I went up to the counter and paid my $20 and filed my petition.  The Clerk even took pity on me and assigned a Guardian ad litem for me since at the time the rule was I had to find someone first.  The rule changed July 1st.

During this time I was in daily contact with the social worker at VBPI and my mother's regular case manager at the CCSB.  It was determined that she needed an assisted living facility.  Well she actually needed long term hospitalization, but since she was only 64 3/4 years old and the only people who can be admitted to the under 65 year old mental hospital are prisoners. And due to bureaucratic garbage she could not get a nursing home evaluation so, an assisted living facility was our only choice.  My sister and I visited dozens of places.  Her more than me, but I spent more time working the phones.  So many of these places were horrid.  One reeked of urine in the room they happily suggested our mother move into.  Finally we brought our list down to a few we liked, but would have to have family pitch in to help pay for.  Then they all started saying they couldn't accept her because of her schizophrenia diagnosis.  This is despite telling them when we first spoke with them and having them tell us it wouldn't be an issue.  Then we lowered our standards and tried others who denied her.  Then we lowered our standards again, but this time were told that because she was not receiving Medicaid she wasn't allowed to go to these facilities.   We heard through the social worker that the dr said we needed to "step it up."  I was livid.  My sister and I were living on almost no sleep getting the run around every where we looked.  There wasn't anywhere to "step up" to!   So basically we were screwed.  Luckily my sister stopped me from heading to an assisted living facility (run by Sentara) to let loose some verbal frustration and found a facility in Norfolk.  The night before discharge we also found one on the Eastern Shore, but when we visited it was definitely not somewhere we would like our mother to live.  The Lydia Roper House in Norfolk is a beautiful Victorian Home.  They have really been wonderful to her.  It's clean, sunny and bright.  I think I want to live there when I'm old.

Mom was settled and a week later we had the court hearing.  Mom had her own lawyer, Colleen Dickerson, who was awesome.  She was as helpful as she could be.  She met with my mom and agreed she needed a guardian.  She walked me through the court hearing and even complimented me on my petition.  The judge said I did better than some lawyers he sees.  I had to pay Colleen's fee of about $1500 and post my bond (insurance in case I screw up my mom's finances) of about $700 and there it was.  Less than if I'd hired my own lawyer, but still wiped out a good portion of our savings (my brother helped and later my older sister did as well). My sister and I were co-guardians and I was sole conservator.  At that moment I really wondered why I had done it.  The work was overwhelming.  But then again my mother did carry me for 8 months, give birth to me and fed me from her breast for the first year of my life so I guess I kinda owe her.

But that day I had scheduled a visit with an eye doctor for her  She had a weird eye discharge that wasn't responding to antibiotics.  There was no time to celebrate a legal victory.  My husband picked her up and drove her to the appointment so I could head over straight from court.  I sat down next to her in the waiting room waiting to be called back and she started to call me every awful name she could remember. She fought me through the appointment.  I  paid the bill with more money from my savings and drove her back to the assisted living and got her up to her room.  I stopped by the office to give them the med orders and headed home.   I started to cry.  Now I'm not much of a crier.  I've spent the past year fighting them because I just simply don't have the luxury of time to cry.  I crank the stereo up to make them stop.  But this time they didn't.  I cried the whole way through downtown Norfolk traffic.  They finally stopped when I was almost home, thankfully.  I didn't want my kids to see me cry. Especially about something they didn't understand. And God I hope they never have to understand.

We found out a few days later that she was suffering from side-effects and the VBPI doctor failed to put her on the medication that would control the side-effects.  It took some time, but she stopped calling me a B**** so much.  There are good days and bad days.  Many times the bad days outnumber the good.  She sleeps a lot.

Life is hard right now.  But I choose to help my mom not because I love it, not because I feel it is my duty to her, not because I owe anyone anything.  I just don't think I could live with myself if I didn't.  So much of life is doing things because they matter to others.  I tend to forget myself.  But when there's so much need it almost feels selfish to do something for myself.  But last night, after the kids were in bed, I crawled in the tub and read a book.  That was just the right amount of selfish I needed.

The Arizona Tragedy

Like many of you I've been following the horrible events that unfolded over the weekend in Arizona.  I feel horrible for all those people who were killed or injured. Such senseless acts should never happen.  But I've been hearing some rhetoric which I feel is really off base.  It's the idea that the family should have known and done something to stop him.  While I understand why the public and media jump to this conclusion I know better.  The public gets outraged just like with Virginia Tech.  They blame the family for not "doing something," and they move on because in their eyes they are blameless.  No need to think further.

But if you've been reading my blog you know that state laws ensure that even the mentally ill have rights that are beyond reproach.  Family members can beg and plead for help, but it makes no difference.  Just suspecting someone is capable of something horrible is not enough to get them locked up, no matter how credible the suspicion is.  Case in point, my mother attempted to abduct 4 kids and was hospitalized against her will.  After an 11 day hospitalization (her longest and we had to beg) she is living across the street from those very children.  She recently has been talking about the kids again and saying they need to be saved.  She mentioned this to her psychiatrist.  She walked out of his office at the end of the appointment without question.  The doctor said again that the medicine wouldn't stop the delusions, it only seems to make her too weak to act on them.

I personally think this makes everyone else a little crazy.  Who would let her walk around with the rest of us when she's clearly delusional?  Apparently, Virginia's legislators that's who!  And we the citizens of this country are equally to blame.  We look at a crazy person and we say "someone should do something!"  But no one knows who "someone" really is.  We have no idea that there is no "someone" who will take care of it.  We want health care and a safe country, but we shouldn't pay a penny to fund it.  We want mentally ill people "controlled," but not if it means we are inconvenienced (by a tax bill) in any way.  So these people walk the streets, as is their right, and we shut our eyes to the risk.  The reality is if I block my mother's freedom in any way I can end up being the one locked up.

I certainly don't want to go back to the days where they forcibly lock people up for mental illness.  But there needs to be options.  We have to make it easier to get mental health care in this country.  We can't let people with mental problems, who require hospitalization, to walk out before the medicines have hit their blood streams.  We will have to throw some money at the problem until we figure out how to help.  I don't have the energy to take the entire fight on my own.  I do have a family to raise and an adulthood on hold already. 

Please care.  I don't want to hear about another tragedy like this one.