Mental Health Essay: I won a contest!

I've been away for a while, but I wanted to share that I submitted an essay for the NSDAR's Women's Issues Essay Contest and I won my state, division and National for 2013!  My prize is the exclusive bragging rights!

This essay embodies everything I've been feeling for the past few years and I hope that those of you reading it have a better understanding of what it is like to advocate for a loved one suffering from severe mental illness.  It is humbling when you find out exactly what you can and can't do to help.  I hope those without first hand knowledge find this informative and those who know the process can see that you aren't alone in the fight.  Hopefully combined we can make enough noise to make real change in this country.

I wish the stigma of mental illness would no longer prevent society and our elected officials from acting.  It's a complex and difficult situation with no clear cut solution.  But maybe if enough of us tell our stories we can change minds and improve mental health care.  I can't imagine it getting worse, but I've been surprised before.

So, without further adieu...


 The Need for Mental Health Care

Mental illness affects one in four adults and one in ten children in the United States
according to the National Alliance on Mental Illness (NAMI). Money, lineage,
intelligence or social status is no protection from it. It doesn’t care who you are or who
you know. But it is often an ignored illness. If a person arrives at an emergency room
with chest pains she will most likely receive life-preserving medical treatment regardless
of ability to pay. If the same person arrives at the hospital in a mental health crisis state
she is at the mercy of what programs are available. Often a patient has to wait hours,
days or weeks for an open bed or all too often leaves without receiving care because none
is available. Often if that patient has insurance the issue can be compounded by
insurance networks. If services are available those who suffer from mental illness often
experience the humiliation of being shackled for safety and are taken to a facility where
their family members cannot check on them. Far worse is the secrecy attached to
receiving mental health care. No one wants to discuss it. It must be kept private. So,
family members who wish to help are effectively rendered impotent and caught in an
endless loop of “we can neither confirm nor deny your loved one’s presence in our
facility.” This leads to dangerous lack of oversight and threatens quality and continuity
of care. Privacy concerns cause those who suffer from the grip of mental illness to stay
sick far longer than is necessary or humane. Imagine walking into a hospital unable to
speak for yourself and the treating medical staff refusing to even verify your drug
allergies or the names of your outpatient physicians with your family. In any other
medical field it would clearly be malpractice on the part of the medical staff. In mental
health facilities it’s standard procedure.

I have experienced the horror that is the mental health system because my mother is that
one in four.

My mother is incredibly smart. She is articulate and is the most creative woman I know.
Her paintings contained the most beautiful lines and colors. I often wonder how she
would have changed the world for the better if her mind hadn't betrayed her.
My childhood was anything but dull. I can’t say for sure when I knew what exactly she
was suffering from. She was a full time mom, but during my elementary school years she
was rarely able to get herself out of bed. Those times were book ended by times of
frantic shopping for nothing in particular or excessive arguments with family members.
By the time I was ten or so I remember her telling stories about being followed and that
someone was trying to kill my father so they could use the insurance money to build a
church. She believed she had secrets that she could be persecuted for if she let them be
known. Life was both terrifying and confusing. In some ways I’m surprised that my four
siblings and I survived childhood at all.

As each of us grew up and began taking high school and college psychology courses we
each started to understand. She was mentally ill, but it would be decades before her
illness was fully clarified.She suffers from the difficult disease known as Schizoaffective Disorder Bipolar Type. It is a combination of Schizophrenia and Bipolar Disorder. The two competing diseases
make treating the condition a delicate balance. One that has taken a long time to stabilize
as they fuel each other just when it seems one is under control. Those times of control
are unfortunately fleeting.

My mother managed to avoid being treated for most of her life by making sound life
choices that protected her, until they no longer could. It was in her 50s when she was
unable to function with other people or on her own anymore. As with most patients she
used medications with success for a few years, but discontinued them because she felt she
wasn't herself on the drugs.

In her 60s she suffered a series of involuntary commitment stays in mental health
facilities. As her family we were often blamed for not forcing her to get help, but the
reality of the situation was that there was nothing we could do legally. Any time we tried
we put ourselves at risk for violating her freedom. We were threatened with being
charged with trespassing when any of us tried to check in on her. My brother worried
that if he were to be arrested while trying to help her he might lose his government
clearance and his job.

Because of privacy concerns we were not allowed to speak with the nurses or doctors in
charge of her care during inpatient stays. Any information we received had to be given in
a sort of code. Receptionists could tell us a time frame when hearings “might” be held.
If we arrived in time we were invited in to give our account of the state of her health, but
shut out again at the end of the hearing. During one hospital stay a Social Worker took
pity on us and allowed a “hypothetically speaking” conversation with him. He was the
only one to help us during those first few hospitalizations and he let is slip once that he’d
never met another patient who was so articulate that she made him believe her.
We felt hopeless. Hospitalizations were painfully short. The medications rarely hit her
blood stream before discharge. Often a court order would be obtained to force her into
taking medicine, but after a few doses she would be released with “mandatory” outpatient
care. “Mandatory,” meaning that she had to promise to go, but there were no
consequences if she chose not to go. So she didn’t. We tried to inform the medical staff
of important details of her mental state, but the only avenue was writing long letters to
the physicians, dropping them off at the front desk and praying it made it to someone
who would read it and act appropriately. We were putting our mother’s life in the hands
of the written word.

Eventually things got worse. For me, it was like watching a car drive slowly off a bridge.
You can’t stop its forward progression, but you can’t take your eyes off the tragedy
unfolding. It was only when my mother attempted to take four children from a bus stop
across the street from her home that we were able to convince her she had to consent to
treatment or face jail time. This was the first time I had to witness her being shackled by
police after waiting eighteen hours for placement in a facility. That time was mostly spent
attempting to hold her back from attacking the medical staff because they quickly became incorporated into her delusions. What I hated most about that day is that I missed my
daughter’s Kindergarten graduation to be there for my mom. And my mother hated me
for it.

A year later I was preparing a petition to sue for Guardianship and Conservatorship. The
legal process was fairly easy. The emotional process was not. Standing in front of a
judge I had to attest that she was so incapable of making decisions that he needed to
revoke her right to vote, the privilege of driving a car, handle her own money, decide
where to live or what medical treatment she should receive. I went through the whole
process without the benefit of a lawyer representing me because any penny spent was a
penny less to help pay for her medical care.

I’ve been her Guardian and Conservator for nineteen months now. Her health is
stabilizing, but that hasn’t been easy. After several hospitalizations she’s finally out of
constant crisis mode. However, because cheap drugs were used before she became
eligible for Medicare she suffers from permanent Parkinson’s Disease-like symptoms.
This is known as the condition called Tardive Dyskinesia. The use of Haldol is common
in psychiatric patients, but 60% of users develop this condition according to NAMI. The
overwhelming majority are women.

My mother is 66 and can no longer bathe herself or be trusted to walk out of her Assisted
Living Facility unaccompanied. When I look back and think of how she was still able to
drive a car only 2 years ago I weep. The medication makes it difficult for her to do basic
daily living activities. Without the medication she is a danger to herself and others. I
live with a constant internal battle. If I hadn’t filled her medications and demanded she
take them she wouldn’t be as physically sick and she is now. If I hadn’t filled the
prescriptions then she might have hurt herself, someone else or died during a psychotic
episode. There were simply no good choices, but I hate myself for being the cause of her
present difficulties.

I’ve spent the last several years trying to find someone to listen. I’ve contacted reporters,
elected officials, Social Services, advocacy groups and many departments in the Virginia
Government with little success. Mental Health isn’t a priority. Even as the mass shooting
happened at Virginia Tech in 2006 then Governor Tim Kaine cut funding for mental
health services, ensuring shorter hospital stays and more going without needed mental
health care. How different would things have been if funding had been in place to keep
the gunman in the hospital just a little longer to ensure he was stable before discharge?
So often it seems the public at large dismisses mental health issues as the result of lack of
moral character or bad parenting and other excuses that let society at large pass the
responsibility to the person who cannot care for herself. A mentally ill person does not  not
choose to be sick any more than a person chooses to suffer from cancer, broken bones or
infections.

My mother and so many like her deserve better.

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.

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.

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.

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).

Balancing the Needs of Many

Caring for a loved one is time consuming and takes every bit of the patience you keep in reserve.  It's amazing how much a caregiver can get done despite the insurmountable task in front of him or her.  Often when you think you can't handle more you manage to pull it together because it's important to make things happen.  This is one of the most important jobs a caregiver will have in his or her lifetime.

I feel like I've managed pretty well through the difficulty of the past 18 months or so.  I think if I ever had a "well" mother and had this challenge laid on me I don't know if I could have managed.  Lowered expectations have a way of saving your sanity.

But my mom's recent hospitalization and Conservatorship work has taken it's toll on me.  My mother was in the ER for 3 days which basically meant my life had to stop for those 3 days.  I missed a Girl Scout Ceremony for my daughter.  My husband was able to take off work, but the guilt of not being available for my children is getting to me.  My kids' teachers are complaining I'm not watching their homework enough and checking things.  My kids are becoming increasingly disorganized and I have no energy to help them fix that right now.  I'm short with them more often that I can control.  I'm still trying to get my mother's house up for sale and had to set deadlines for family members to get the things they are interested in keeping out of her house.  I'm trying to get the house cleared out, cleaned up and fixed in time to put it on the market in March.

Oh and start working for actual real money.  Somehow have to fit that in.

Conservatorship

If anyone tells you that handling the money makes you anything other than the bad guy tell them to take a hike.  It's inevitable that everyone will take their time getting things done because they aren't responsible.  It's me who could get called in to court if something isn't done right.  If my mom's house isn't sold before her alimony payments end next Fall it's me who has to figure out how to pay her bills.  And to everyone else it's "what's the big deal?"  Setting deadlines makes you the enemy.  Without deadlines you are stuck in an endless loop of "I'll get to that when I have time.  I just have so much going on."

I was thinking of not fixing up the house, but my Realtor warned  me that I would be unlikely to get what I want out of the house and it will sit on the market.  She gave me the number of a company that will come out and just throw everything away.  I'm fighting the urge to call them.

Exhaustion is King

When my mother finally was admitted into the Gero Psyche ward at Norfolk General and she was settled on her bed I walked to the parking lot thinking I had lost every bit of fight left in me.  I was angry.  I wish I could say that feeling went away with a good night's sleep (as if there are many of those these days), but it didn't.  I've been really contemplating the usual daughter role of just being there to sign occasional paperwork and a visit once a month.

But then my mind drifts to all the times when I was a kid and in the hospital.  I spent more than my fair share in hospital ERs for my asthma.  From at least the age of 5 on my mother would drop me off at the door leading to the ER beds and I would spend the night lying in a curtained off area alone.  My breathing and the epinephrine shots made it difficult to coherently tell the medical staff anything.  I remember trying to ask why they were taking blood from me (I was 5) when I'd already had two vials drawn a few days before. I had two nurses jump on me to hold me down for a third to draw the blood.  Two hours later my mother finally came back and when they explained what happened she laughed and said that I was talking about the blood work taken a few days before.  I never let another nurse or doctor come near me with a needle for almost 20 years after that.  I would panic if I saw one anywhere.  Even if it was just a picture of a syringe.

I guess that's what's driving me. My mother can't speak for herself and I don't want her to go through the Hell I went through alone.  I really wish I could turn it into "well, she didn't help me when I needed it" but I can't. No one deserves that.

My mother is so much better these days. It's almost like night and day.  I spent all day Tuesday and Thursday just taking care of her this week.  Friday was spent paying her bills and organizing all of her notebooks and Saturday was spent cleaning at her house.

This is what my van looks like a lot these days.

And this barely makes a dent in the work.

On Thursday my mother said "thank you" for taking her to Dunkin Donuts.  Those are not words she says often.  I should be happy with the few "atta girl"s I get.  But all I wanted to say was "I've dropped everything for you, run myself ragged, my health is suffering (muscle spasms are just soooo fun) and gone above and beyond for you and you're going to thank me for getting you Donuts!"

I kept my cool.  I kept it through lunch.  And through shaving her legs.  And through clipping her nails.  And picking up prescriptions and bringing updated paperwork to her assisted living.  But I really need a vacation.  I wouldn't even mind another flu induced hospital vacation.  Okay, not really.  It's the exhaustion talking.  Maybe a couple of days in bed are in order.  Or better yet a week where I can be crazy busy working with breastfeeding moms while my kids are at school.  Then giving my kids my full attention when they get home.

Maybe I should stand on a Indian River Road with a cardboard sign that says "Will Give Lactation Help for the Altruistic High 9am to 2pm daily!"

Life Doesn't Stop So You Can Catch Your Breath

It has been an exceedingly rough week for me.  I have the pressures of everything with my mom, but this week was a reminder that my kids need me too.

My daughter has been struggling with her teacher this year and it became obvious very quickly there was no way she could stay in this teacher's classroom.  I felt I was unable to communicate with this teacher in any way.  It left me feeling like I should return my diploma for my communications degree.  My daughter was so stressed her behavior became erratic and she refused to do just about anything asked of her.  Finally she was moved into another classroom today and so far seems to be happy and relaxed again.

My son thankfully, is doing great in the 4th grade and he has a teacher who really seems to get him (she loves that he loves to give you the play by play of his favorite show).  After such a rough year last year for him this much needed for all of us, especially him.

I was thankful I had the time this week to help my children.  I feel like with my mother's illness they often get only small strips of me, when they really deserve whole chunks.

So today, after making sure my daughter was comfortable in her classroom I had to turn my attention back to my mother.  She had a dentist appointment today to restore her tooth and prep it for the temporary crown.  You may remember she had a root canal last week.  She did great for both appointments, but this morning she was acting strange.  She was telling me about how there were motors in the beds that flip you out in the middle of the night and that a guy who lives upstairs (still an all female facility) died because he became trapped in the bed.  And she went on and on about how her psychiatrist was having the med techs overdose her so she would die and that the housekeeper was saying her room was filthy and if my mother didn't clean it up she would be evicted and then the housekeeper could have her room.  Her room was pretty much immaculate when I was there.  Okay I think maybe the comb had a strand of hair stuck in it.  And she had an incident a week ago where she fell out of bed and they weren't really sure what happened.  I found the med tech today who helped mom and she said she fell in between the wall and the bed and got stuck, but the bed is now pushed against the wall and that should solve the problem.

So in true tag team style I texted my sister while I was in the waiting room during mom's time at the dentist to please call the doctor and I described the delusions to her.  Her next appointment wasn't for two weeks so it couldn't wait that long.  She called and doctor decided to increase the dose and sent a fax to the assisted living.  Of course he didn't sign it or make it clear so the facility refused to honor it and we ended in a circle of faxes and voice mails again.  Things didn't happen so her dose won't be increased until Monday at the earliest.  Are you as annoyed as I am right now?

So I decided to clean up my mom's nails while I was there and had time and she couldn't stop talking about how she was going to die if her meds were increased and that the bed was going to crush her.  I assured her the bed would not hurt her, but she got angrier and angrier.  She said I was going to be very sorry when she died and then she said "I hope they come and butcher you."  Now my mind went to assuming "butcher" was a metaphor for taking me to court for elder abuse, throwing me in jail or something so I simply said, "well, yes if I screw up the court will hold me accountable and I could end up in jail."  Clearly I misinterpreted her because she then said, "no you won't.  You'll be dead and in little pieces."  She has said some pretty awful things to me, but I think this one won the Oscar.

So I got out of there, went to the school to finish my volunteer work, got stuck in a rain storm on the way home, came home to a cat vomiting all over the place and put on a brave face for my daughter who needed nothing but joy today.  We got errands done and I bought her the toy she's been eyeing for having such a good day at school.  My son got a CD he's been wanting.  We got some new books and traded in some old toys for some new clothes.  Now the littles are sleeping peacefully.

I've said before that I view crying as a luxury you can only afford when you have time.  I think tonight I'll have to make time.

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.

And the saga continues

There is some small part of me that wakes up every morning that thinks maybe today mom will be better.  Okay, it's a huge part of me that screams it during every waking moment, but that voice is starting to get a little hoarse and fade away. 

Mom has been having a very hard time recently.  Since she signed the POA I've had people fixing things in her house.  And I think it's getting to her.  My brother was able to go in and fix the eternally stopped up sink and now there are two men coming in and out of her house replacing the heat, a/c and duct work.  This has been very upsetting to her, but I'm sure if she really thought about it she prefers a sink that doesn't overflow (and becomes unusable for a week) and actual working heat.  But she argues with these people till they almost walk off the job and has started taking it out on her aide. 

Ah, the aide.  Seems like a never ending problem.  The first aide was awful.  She seemed to do nothing while she was there and couldn't even be bothered to put mom's medicine out for her.  Not sure if that was included in her training, but whatever.  In November mom got a new aide, who actually does her job.  She cleans and dusts and fixes mom a meal and never forgets to give her her medicine.  What a concept!  Of course this irritates mom to no end.  She was very fond of the cobwebs that have been removed, the spiders have been evicted and her house no longer has that wet storage shed smell.  It just isn't home anymore. 

Back in December I told her aide that she was welcome to make herself something to eat and have lunch with mom.  Mom always eats better if someone is eating with her.  I also said she was welcome to any drinks or snacks she needed while there.  Mom was standing next to me as I said this to the aide.  But she's forgotten the conversation and no matter how many times I remind her she is constantly accusing the aide of stealing the bottled water.  So I wrote a note on the fridge that says "...(the aide) may eat a meal and take a bottle of water with her when she goes.  Cathy."  Then I had to add another.  "Please let...(the aide) do her job.  She is trying to help you. Cathy."  I was hoping that having it written down would remind her better.  I showed mom the notes before I left and told her to read them whenever she got upset at the aide.  Well Monday morning she called me to ask what those notes were on the fridge.  I remind her that the aide is the only thing standing between mom and assisted living.  That usually calms her down, but she forgets very quickly and we have the whole discussion over again.It just never ends.

Recently mom has been talking about a different set of neighbors trying to kill her with a shotgun.  Then another neighbor is fighting with her over her imaginary boyfriend.  I'm concerned she will have to be hospitalized again.  Or worse.  She may hurt someone before we can convince anyone to hospitalize her.  We've talked her into trying a different medication.  Here's hoping it does the trick.  She'll see her doctor next month to discuss it.

But my biggest issue now is I'm not sure how much energy I have left to deal with this.  I'm getting burned out even with my sister sharing the responsibility.  I would like to live my life and not spend it taking care of mom.  I resent her even though I know she's not this way because she has a choice.  Life just makes you want to crawl under your bed and stay there sometimes.  Course if you do that you miss the fleeting moments that make life bearable.