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.

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?

Do You Hear That Cracking Sound...

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

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

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

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

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

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

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

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

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

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

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

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

A Good Daughter?

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

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

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

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

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



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

Sell, Sell, Sell!!!

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

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

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

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

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

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

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

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

The Ghosts of Christmas Past

Today is Christmas Eve.

And I feel haunted.

This year I should be happier.  My mother is improving and is not living by herself anymore.  Last year I went out of town at Christmas and then a huge snow storm hit leaving her alone for days.  I had 3 siblings in the area, but no one could reach her because of the bad roads.  And she wouldn't answer her phone.  Talk about panic!  This year she's in an assisted living with a back up generator and plentiful meals and people there to take care of her medications so we don't have to.  That should make me happy.

My mind is drifting to all the Christmas' we had as kids.  My mom was always sick, but it was the one day of the year she tended to reign it in.  She allowed my Grandmother (her mom) to visit.  It was the only time of the year we saw a single relative outside of siblings and our parents.  One year we even saw our Grandfather (her dad).  He was always welcome, but rarely took the effort to visit.  The other relatives were barred from visiting.

Mom and Dad tended to fight less on that day.  We actually got to see our father. He was normally at work every day till very late so it was a treat to see him.  And since McDonald's was closed we usually had a home cooked meal.  Yes, there were some years we made what we affectionately called "Crap Macaroni and Cheese," but there were quite a few nice years in there too.

It's a lean Christmas for our family this year because our savings went to home repairs and the legal costs of  Guardianship and Conservatorship.  I still have the worry of clearing out my mother's house to sell.  It's like a specter hanging over my head till the walls are painted and the For Sale sign is posted in the front yard.  My life is on hold and I hate that Schizophrenia seems to have so much control over my life.  It isn't fair that it has so much power and I have so little.

I know I have a home and two beautiful children and I should be thankful for what I have because others are less fortunate and blah, blah, blah...Just because I didn't win the "who has it harder" contest doesn't make my challenges any less difficult.  I feel like I would gladly trade my difficulties for the average American's difficulties.  Geez, job loss and eviction as your biggest worries sounds like Heaven to me right now.  And I know that's a horrible thing to say, but I can't help but wallowing.  I've earned the right to spend a few minutes feeling sorry for myself.  I'll be spending the next few months selling my mother's house and weeding down the volunteer commitments I have.  Some of those commitments I will miss and others I will not, but I'm irked that Schizophrenia gets more say in how I budget my time than I do.

I will put a smile on my face and make tomorrow as wonderful as I can for everyone else.  I will not subject my kids to a crying mess of a mother.  That certainly won't make any of us feel better.

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!"

The Eternal Unibrow

A few months ago I was talking with some friends about moms.  One friend was telling us the story about her mother's final months.  It was sad and horrible for her to watch and I know losing her mother was devastating.  Reminds me I'm not the only one with struggles.  This brought the conversation over to the challenges I've had taking care of my mom.  My sister and I had just spent a month looking for an assisted living for her live in and get her as healthy as we could after a long hospital stay so I guess I had assisted livings on the brain.  So the conversation went over to my worst fear...

My worst fear in life (at the moment) is not getting Dementia or my kids not living up to their full potential, or my mother getting sicker.  That would be normal.  I guess I just see those as the ups and downs of life that are expected and nothing to fear because you can do little to change what will happen.  You handle things as they come.

My biggest fear at the moment is living out my days in an assisted living facility with a UNIBROW.  

Now when I mentioned this the entire population of the NSDAR's Historian General's office burst out laughing.

Now, I still am not sure why this was funny because really I was being truthful.  But I guess not everyone is on the same thought pattern as me.  My sister and I combined visited dozens of assisted living facilities (ALF) and one of the main questions we brought up was about grooming.  All the places had some sort of "beauty shop" where hair was washed, cut and styled.  After telling us about these wonderful services I would always ask "do you provide waxing or hair grooming for other parts of the body like the face or legs?"  Every person I asked looked like I might need to be locked up somewhere and medicated heavily.

When we are young we think nothing of what grooming habits we will be able to keep up when we are old.  That's normal.  I'm not a vain person (I don't think).  I rarely wear makeup.  My hair is wash, dry, brush (pony tail?) and go for better or worse.  I have started a love affair with yoga pants and t-shirts that are at least mostly stain and hole free.  But I try to never miss a waxing appointment.  Big caterpillars over your eyes that join in the center just aren't attractive on anybody.

These days I spend time clipping my mother's nails and shaping them so they won't snag her clothes or scratch her skin.  I've on more than one occasion convinced her to bathe with the promise of shaving her legs afterwards.  I bought an electric razor now for that purpose to cut down on the chance of nicks.  It was difficult as a kid to learn how to shave my own legs without cutting myself.  Imagine shaving the legs of someone who wiggles.  Some days I help her dress and put on her deodorant for her or comb her hair.  She has cradle cap from lack of hair washing.  She was never great at washing her own hair, but now that she's in an ALF we have to remind them to wash her hair and she often protests.  It's hard to see her like this.

So what's your biggest fear?  Where are you in your life that makes that a fear?  Do you fear McDonald's because of the return of skinny jeans?  Do you fear health problems?  Do you fear the mail carrier because of the bills or bad news he/she brings?

Love it or hate it but fear drives our decisions in life.  Right now I'm fine with my eyebrows driving mine.

Organization by Fire

Those of you who know me in real life know that I am the last person you would called "organized."  Up until the last few months my organization system has consisted of a series of piles of paper.  Now if you were to ask me where a particular paper was I would know it was 6 sheets down from the top and would be able to find it within seconds.  If my husband or one of my kids moved said pile to look for something or because it was in their way the pile was dead to me.  I would search the house for hours for the pile and wouldn't find it because it was moved a foot to the right.  But I almost never pay a bill late or lose things despite my house looking like a hurricane blew through it.  I have a very dear friend whose house is always immaculate, but she can't find anything.

Since becoming Guardian and Conservator for mom, PTA Treasurer, Book-keeper for my little non-profit chapter and my volunteer work with scouts I had no choice but to become organized.  It's not perfect, but it is helping take the stress out of finding things.  There are just too many facts swimming in my head for me to keep track.

I've been receiving lots of compliments on how I'm so organized for my mother's records so I felt I would share with you how I've done it.  Maybe this will help you with your medical records or records with your medically challenged loved one.  I will say I enjoy the satisfaction of being able to pull out my notebook and immediately find records and dates when others feel the information is impossible to find or they disagree with me.  The notebook became an invaluable tool when dealing with the Assisted Living Facility this past two weeks.  And I can almost feel the fear in people when I whip it out.

My older sister a few years ago mentioned to me that she decided to make sure she got all her children's doctor's business cards and put them in a scrap book for her husband just in case anything happened to her.  I landed in the hospital earlier this year with flu complications.  With my health history there have been a few times I've been almost certain I wouldn't live to see morning so this made me feel the need to keep records that I could leave behind for my family in case something happens to me.  Car accidents, construction accidents, work accidents happen often enough and none of us truly knows how long we have on this Earth.  So I started a system of keeping business cards of doctors in baseball card holders.  Then I started putting cards from people who have worked on the house, cut my hair or give me quotes for work.  It's really wonderful having them all in one place and all I have to do is open the folder and see which card I need within seconds.

So I started to feel I needed to keep really good records for my mom.  You never know when you need to have the fax number of the pharmacy or the address of a doctor quickly.  So I'll describe below how I have set up my records.

I keep one notebook with me to carry to and from appointments.  This is the list of things I have in the notebook.  I made a smaller one for my sister for her to keep track.  I keep most things in plastic sleeves so they can be removed quickly when needed, but often viewed without having to be removed.  Other things just have punched holes so I can access and write on them without having to fiddle too much.

1. A pocket for keeping receipts, scripts, checkbook, pen or anything little that can easily fall out and float away
2. A calendar I printed from a website.  This allows me to write down mileage for medical visits, dates of doctor appointments and I also put notes about what I did on visits with my mother.  If I clip her nails I write it down.  If I had to give her a bath I write that down.  If I have a problem I write that down and write when it's resolved.
3. A contact sheet.  This is for the people I speak to on the phone and need to write down their information.  This way I don't have dozens of slips of paper floating everywhere.
4. Photocopies of my guardianship/conservatorship qualification letters so I can give a copy on the spot
5. The originals of the qualification letters so if someone needs to see the original it's immediately available
6. Photocopies of insurance cards
7. Medication delivery record since that's clearly needed now
8. Copies of medical orders and med lists and prescriptions.  Appointment sheets if printed for me
9. Some medical records, insurance letters, pharmacy information and similar information
10. Directions if I've had to print any
11. Baseball card sleeves filled with the business cards of people I talk with, insurance cards and appointment cards.  I always ask for two of everything if possible so my sister has one as well.
12. Ledger paper to record checks written

I keep a notebook at home which contains:

1. Bank statements
3. Account numbers that I may need to find quickly
2. Medical records that I don't need to carry with me, but should keep on hand
3. Lawyer information that details my requirements as conservator
4. Mom's birth certificate and Marriage certificate
5. Copies of my reports for the court
6. Originals of the order written by the lawyer dictating our responsibilities as guardians and conservator
7. Anything else I feel is important that I'd like to be able to find quickly

And I have a 12 month pocket folder for all receipts so they are easy to find.  I also have a monthly financial report I created with the help of Excel and my husband.  I modeled it after the PTA's reports.  Volunteering has helped me get so much training for free and has helped me immensely.

It has eased my mind that I have things organized.  Unfortunately spending time on this has taken away from organizing my house.  Some days I can barely walk in it without stepping on something.  I need to get my kids or hubby to start doing more chores.  Or hire a maid who works for free.  Yeah I don't think those things are going to happen either.

What We Have Here Is a Failure to Communicate

I thought today I would share with you all what a typical phone call is like for me these days.

Me:  Hi I'm calling on behalf of my mother.  She is an incapacitated adult and I am her guardian and conservator.  I need to check on the status of her insurance/payment/bill etc.

Them:  Huh?

Me:  I am calling on behalf of my mother.  I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.

Them:  So, did she die?

Me:  No, she is very much alive.

Them:  Can I talk with her?

Me:  No, she is an incapacitated adult.  She cannot speak for herself.

Them:  Just put her on the phone.

Me:  Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.

Them:  Well, we don't recognize court documents.

Me:  Are you serious?

Them:  Yes.

Me:  Okaaaaayy, so what am I supposed to do to take care of this for her?  Can I email you a copy of the papers.

Them:  You can fax or mail the originals to us to look at.  We will need a certified copy of her death certificate.

Me:  She's still alive!

Them: Oh, well then just fax or mail the court documents for us to look at.

Me: Ok, I just faxed them.  Can you verify you've received them?

Them:  I can give you no information.  It takes 14 days to process the fax if we did indeed receive it.  Call back in 14 days and maybe we can talk with you then.

Me:  14 days!  Are you serious?

Them: Yes.

Me:  Oh geez.  Well thank you for your....help.

Them:  No problem.  Did we help you to your satisfaction today?

Me:  Um, is that a trick question?  I think the answer is no.

Them:  Thank you for calling blah blah blah.  Have a nice day!

And scene.

Makes me long for the days when all my calls were augmented by a screaming two year old at my feet.  Ah, those were the days....

Conservatorship! The fun is only beginning

Ah, Conservatorship!  I fought very hard to take control of my mom's finances.  It couldn't be that hard, right?  And I would sleep easier at night knowing her phone, electricity, gas etc weren't cut off during the worst weather possible.

Well, it isn't as glamorous as it sounds.  Although I know you all envy me.  I have a report due in a few weeks of the inventory of all her assets.  First the court forgot to assign me a commissioner of accounts.  I wandered blindly for two and a half months before the mistake was discovered.  Then I find out I have to pay several hundred dollars for a lawyer to audit me.  Fun, fun.  When mom still owes me thousands for paying medical, legal, insurance, grocery bills she couldn't afford this is just icing on the cake.  Yippee!  Thankfully the clerk reminded me if the order appointing me as conservator doesn't require certain things to be done I don't have to do it.  So I can make up numbers for just about everything.  Except they require me to have the house appraised.  I'm having her jewelry looked at to see if anything is worth appraising there.  That's if I find two minutes to even get that all set up.

Since I sued for Guardianship and Conservatorship without a lawyer (since my money tree burned down) I feel like I've been flying blind.  In the next month the inventory is due and in December my initial 4 month financial report is due.  When I asked the lawyer for guidance on a few things his response was "if you have concerns you should contact a lawyer."  Aw, thanks!  You're such a big help!

Things are better financially for my mother.  She has Medicare Parts A, B and D.  Yippee!!!  For the next year she has alimony and social security.  The alimony ends in a year. My plan is to have her house sold by then or we'll have some big problems.  But now is the time to get the extras done.  I took her to a dentist last week and she needs major dental work.  She's never taken care of her teeth.  She began to lose them in her 40s.  Half of the teeth she has are implants.

My younger sister and I had to make some tough decisions on what to do with her teeth.  One tooth can be saved, but will require about $2000+ worth of work.  There are 3 other cavities which will cost a few hundred and one tooth that is beyond saving and will have to be pulled by an oral surgeon.  We can space it out and the regular dentist's office (the initial work must be done by an endodontist) has said they will work with me on the bill as best they can.  He will do the crown and cavity fills once we get to that point.  The dentist was concerned that if they started work on the expensive tooth she may become non compliant and refuse to let them finish the work (it will take about 3 visits or so to complete).  That would end up making the work done pointless and then we'll have to have it pulled instead.  In the end my sister and I decided to go for it.  Might as well save the tooth if possible and it's between two implants so really there was no option left other than pulling it and leaving a gap.  She has been complaining for months about that tooth and seems highly motivated to get that one fixed.  And the Aricept seems to be helping her understand what she needs to do.

I have one piece of advice for all of you reading.  Brush your teeth ladies and gentlemen.

Today I had to pay $350 for the house to be appraised.  I can't help but think, do these people who make these rules about conservatorship understand that every penny I spend on appraisals, report fees and audits take away from the money to pay for her medical care?  She isn't a millionaire.  The money will run out sooner or later. I know I have to be watched or I could just run away with everything, but it just saddens me to spend money on things that don't directly help her.

So I'm a bit frazzled.  And with all that I have the Guardianship duties I share with my younger sister.  That requires a short report due sometime between October and December we think (they give us such awesome concise instructions, ya know!).

And all my volunteer jobs are still ongoing.  I love them all.  If I didn't have something to distract me from all of the stuff from my mom I think I would seriously go crazy.  I'd have to turn to alcohol!  Or knitting, gah!

If I know you in real life please give me some patience.  I definitely won't be at my best, but I assure you I won't be at my worst.  And you can always sneak me a shot just in case.

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.