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?

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).

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.

Resolution - I hope

Today was the day to meet with the Senior Services Ombudsman and the director, director of nursing and one of the Med-Techs at my mother's assisted living facility.  I have to say I feel it went better than I expected.  The ombudsman was awesome and really helpful.  I have no idea how we could have done this without him.

I stated my case to everyone and it seems that even though I felt I was informing them there was a problem they did not listen to me at all.  It was only when my sister went up to the facility 4 days after I informed them of the problem they claim was the first they knew about the situation.  I pointed out that everytime I've tried talking with them about anything recently they have seemed distracted and have made me feel dismissed.  I guess that's because they were distracted and were dismissing me.  And here I thought it might be all in my head.

Funny I spent the first 20 years of my life trying to become invisible.  Now I'm fighting for people to notice and listen to me.  Hmmmm.  I guess I'm hard to please.

I think what helped me the most was that I started tracking the days I was visiting my mother or taking care of things for her.  I primarily started that (and made one for my sister) to keep track of mileage and appointments, but it has become invaluable now because I can write on it what happened at each visit.  When I was able to tell them how many times I was physically in their facility during the time period in question, what days I came in to talk about medications and when I delivered medications or needed supplies that helped make my case credible.  We pointed out some huge holes in their communication and have come away with a plan which I hope will work.  I really would hate to move my mother from this facility, but if these changes aren't made I see no other option.

Today the agreement was...
They will contact me if my mother refuses any medication.  
They will make they give me a 10 day notice before her medications run out.
Any falls will be documented (as some have not been)
They will be better about communicating with each other and with us.
I will make appointments when I need to talk with them (I'm concerned about this given I often need to speak with them just after a medical appointment and never know when I will need to speak with them until the appointment is over.  But I was told I can send an email and the director will receive it on her phone and will be able to accommodate me quickly.  Here's hoping).

The Ombudsman will go back to the facility to make sure they are compliant with the plan and we will meet again in a month to see how things are going.  My sister brought up that if there are problems with our mother's meds the facility should really be checking every resident's sheets to make sure they handling those appropriately   Initially the directors were resistant, but the ombudsman said the expectation is that a problem has been brought to their attention and they are expected to implement the fixes facility wide.

Here's hoping in a month it's nothing but sunshine and rainbows again there.

And my mother is doing better today. She was still very delusional and agitated, but improved over the previous week when I picked her up.  After her appointment she received her Haldol shot.  About 30 minutes after that shot, she was smiling, the shakes had gone away and she was a million percent better.  Here's hoping she doesn't start to tank as the shot wears off again.  I guess if she does we know she can't handle 4 week intervals.  And the doctor assured me that the issue with her Celexa (the drug she missed at least 9 times) wasn't causing the present issue.  I'm not sure if I buy that completely, but at least it made me less worried about it.

I've been told many times that people have never seen such active family members when it comes to caring for a mentally ill or aging loved one.  I find that sad, but understandable.  This has caused me so much stress.  I feel like it is chipping away at me.  But since it hasn't destroyed me in 36 years of fighting that must mean I'm made of tougher stuff than schizophrenia is.  My mother's illness has taught me to fight for what I believe in, so in some ways I should thank it, although I would really really rather not.

When You Have to Question Your Loved One's Care

This week has been especially tough for us.  Not that any week is easy these days, but this was especially difficult.  So I'll start from the beginning, but the basic message is always double check people.  Even the best facility you put your loved one in has its flaws.

My mom has been living at an assisted living facility (ALF) since the end of May when she was released from the psychiatric hospital.  My younger sister and I spent a great deal of time checking out facilities before placing our mother in one.  We wanted to make sure she had the best care possible and this place looked like it was the best.  They are clean and seem to genuinely care about the residents.  It has the lowest resident to caregiver ratio of any facility we visited.  The day we moved her in we were so relieved and confident we could do no better.

Mom has had a few falls.  Every time until recently they've been able to explain what happened very quickly.  We discovered her shoes were simply too loose and led to falls.  I bought her new shoes and that seemed to solve the issue, although I am thinking of buying a slightly larger size because of a rub mark on her foot from them.  But more than two weeks ago she had a fall.  I was immediately told the next day by the Med-Tech on staff, but it had happened over the weekend and she did not know what exactly had happened.  She only knew that mom had a bruise on her right elbow and was refusing to sleep in her bed.  Mom said she was stuck in her bed somehow, but there was no incident report that could explain.  Last Friday (9/23/11) my mom was finally able to tell me which Med-Tech helped her so I could get an explanation.  Turns out she rolled out of bed the wrong way and got stuck between the wall and the bed.  I didn't think to make sure the bed was flush against the wall, so I blame myself for it happening, but I'm angry no one could tell me what happened for two weeks.

But fast forward to this Monday (9/26/11).  Mom had been acting strange so we had called the doctor to change her medication dosage on the previous Friday.  He didn't sign the order (he was at home and couldn't sign the sheet) so he called the facility personally to ask them to change the dosage and he would get them the order corrected on Monday morning.  On Monday I get a call telling me she's out of her anti-depressant Celexa.  I told them I really didn't want to go up there that day as I was busy (and the events of the previous Friday made me really wanting to avoid my mother).  But I was told she couldn't go without so I'd better get there fast.  So I called her doctor and had them call it in and dropped everything to pick it up and get it there in time.  But when I picked it up I started to think when did I last bring them this medication?  Initially I looked at my phone calendar and thought they shouldn't be out of her pills for another week.  Then I turned to my absolutely awesome organized notebook and discovered I had filled the previous prescription on 8/18/11, picked it up and delivered it to them on 8/19/11.  She should have run out 9 day previous by my calculations. Why were they just now calling me?  Is that why she's acting strange?

So I went up to the ALF and spoke with the director who told me she didn't know and the medical director was at the ER with a resident.  She said she didn't know where the records were kept, but showed me the September record that indicated my mother hadn't missed a single dose for the month of September.  I was promised a call on Tuesday once they could get the August record out to find out what happened.  I discovered while there she had only two pills of her Aricept.  They hadn't even mentioned she was low!

So I didn't get a call on Tuesday so I went up on Wednesday and demanded answers after taking my mother to her appointment with her psychiatrist (she was doing no better than she had been on the previous Friday).I was told the morning Med-Tech is the only one who knows where the records were kept and they had not had time to search for them, despite having 3 days in which to do so.  They assured me an answer by Thursday morning.  I mentioned that as Guardian I have to send a report to Adult Protective Services (APS) as required by my court appointed duties.  I noticed a sudden change in the Medical Director's demeanor.  They blew me off for 3 days and I think that's the first moment when she realized this wasn't going to just go away when I got busy or bored.

On Thursday morning I received no call so my younger sister (co-Guardian) headed up there to demand answers.  They (the two directors) were angry that they had to answer both of us and still had no answers to give us because we were taking up the time they had to investigate.  They must carry shovels with them everywhere they go to carry that around.  They demanded to only have one of us speak to them.  My sister quickly denied their request, and read them the riot act (did I mention she used to work in a nursing home and knows how they are supposed to do their jobs?).  They started to lay blame with the morning Med-Tech, who knew nothing about it.  But when my sister informed the Med-Tech they were trying to blame her the tech did say to my sister that she's never seen them get so upset about something so she's betting the problem will be resolved and will never happen again.  We will see.  The directors even tried to pit my sister and I against each other and claimed it was our miss-communication that was the problem.  She just firmly informed them we communicate incredibly well and assured them the problem did not lie with us.  I don't think I've ever been so impressed with my sister in my life as I was that day.  I really wish I could have been there to see it.

The directors promised answers by the following Monday (a week after I brought the issue to their attention).  Then on her way out my younger sister called the board in charge of ALF's to start an investigation.

Today we still have no answers and our mother's health is at stake.  If they started the medication late her recent mental decline could be caused by the addition of this drug.  If they were forgetting doses here and there that could be causing her mental decline.  I contact Chesapeake APS since our Guardianship reports go to them.  They told me how the procedure would work and that we had to contact Norfolk APS since they had jurisdiction.  I left messages, but haven't heard back yet.  The board in charge of ALFs has not returned my sister's messages either.  My mother's psychiatrist has been informed and they are watching to make sure it is handled.

I hope my mom's ALF uses this as a learning experience.  If a patient had died from their lack of proper medication protocols things would be far worse for them that what's going on now.  But they seem genuinely shocked that a family member would notice a mistake, which to them seems small.  I told my mother's case manager at the Community Services Board that the ALF must not realize who they are dealing with.  I sued for Guardianship and Conservatorship without a lawyer and did a better job than a lot of lawyers do according to the judge. Do they really think they can get anything past me?

Now I'm demanding they count every pill out for me when I'm there and counting the calendar days to figure out how many pills they've used.  I feel like I'm doing their job for them.  I even bathed my mom for them on Wednesday because she was just gross (although I know she can be difficult to convince to bathe so I'm not holding that against them).  I'm starting to wonder what exactly I pay them for.  Mom's doctor at the psyche hospital warned us that he didn't see good outcomes for mental patients at this ALF.  I'm starting to see what he was talking about.  I'm really hoping that we can just get them to fix this problem and we can go back to trusting them.  But trust is a hard thing to earn back.

I know that if my mother were able to understand what is going on, she would be thanking herself and my father every day for my expensive private grade school and public college education.  Now if I could just get paid for my expertise we'd be all set.

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.

So if there were any doubt the title of my blog rings true...

Being Guardian for your mother is always a challenge.  No way to make it easy.  It isn't something that you just fit in here and there as you have time.  It's pretty much a full time job.  Thankfully I have my younger sister to share the responsibility, but still it's difficult.

Today was one of those difficult days.  

It was a good day for my mom. She was mentally alert and able to understand directions and answer questions.  She saw her eye doctor this morning and she seemed to really understand what was going on.  Those have been rare so I really love the days where she is truly present.

Of course things must be equaled out by administrative garbage.  Because of the assisted living center's rules I must provide a prescription for everything a doctor wants to have them do.  Artificial Tears, Tylenol, antibiotic ointment, lip balm you name it requires a prescription.  This has been a challenge because many of the doctors are moving to electronic prescriptions.  I now have to get them to write out scripts to give to the assisted living.  Just an extra step.  Mom has one doctor who consistently refuses to sign things because he feels a print out should be good enough.  And it isn't so I have to deal with it all when I get mom back to the facility.  

Well today I was informed after 3 months of her living there that the doctor not only needs to write a prescription for any drug changes the doctors also have to write what condition they are giving the drug for on the prescription.  Since the doctors don't routinely do it, despite the medical director claiming it was regulations, I had to hear about how they should know this.  Like I can do anything about the knowledge contents of their brains.  And I hear this over and over from BOTH SIDES!  What crazy conflicting regulations are they citing? Oh, yeah, that's right.  I'm in Virginia.  Of course it's a mess!  

They must just think everyone is psychic.  Well, sorry guys.  My psychic ability is in the shop.  I don't think it will be fixed anytime soon.  

Plus I've been hearing about for months how the doctors also have to sign their med order sheets.  I don't know why a prescription with his/her signature isn't good enough, but apparently it isn't.  And I was hearing about how she's been faxing it off for months to try to get my mom's doctor to sign it.  Well the doctor was the one she saw in the hospital and doesn't see her anymore.  And didn't prescribe half the drugs on the sheet.  Of course he's not going to sign it.  She tried mom's other doctors.  The primary doctor won't sign it because the list includes medications from the psychiatrist and the psychiatrist won't sign it because it includes medications he didn't prescribe.  It all makes me want to scream!   Is it really that hard?  I don't blame the doctors.  I get why they won't sign it, but geez y'all need to get it together and make something work!

So if you ever doubted why I named my blog "Everyone's a Little Bit Crazy" doubt no more.  Although I'm starting to think I should rename it "Everyone's a Whole Heap of Crazy."  

Well, maybe someone in the world is completely sane.  If I find him or her I'll let you know.  Don't hold your breath.

So How Is Your Mom?

So How Is Your Mom?  It's a question I hear so often sometimes I want to scream, and other times I desperately wish someone would ask me that very thing.  My mom's illness has consumed my life and I'm caught between wanting to do everything I can to "fix" things and wishing I didn't have this burden to bear. 

So, really, how is she?  I have been so caught up enrolling her in Medicare and talking with her doctors about how this drug is garbage and this one seems to work well I forget to look at how she is doing.  I guess the best way to describe it is "better."  Since the dose of Haldol was lowered she is stronger physically.  When she was originally put on Haldol she was an active young looking 63 year old.  Quickly, she turned into a "on death's door looking like a 100 year old" woman.  Haldol was to blame.  It's only benefits are that it's cheap and can be injected into a unwilling patient who doesn't see her illness.  The side-effects are absolutely horrid.  But if you don't have insurance you take what you can afford or what's given for free. 

She's on a much smaller dose of Haldol now and the doctor added a new antipsychotic with it to make up for the lower dose.  She's still delusional, but at this point she's healthier than we hoped for just a short time ago.  She's stronger and a bit more lucid and she hasn't cussed me out in at least two weeks.  She's been diagnosed with Dementia which is common with schizophrenics.  The doctor started Aricept last week and we are hoping it will make a difference. 

We had Hurricane Irene swing through the area over the weekend.  It wasn't so bad, but it reminded me of the last time we had a Hurricane coming our way.  I had my mom stay over and my husband and I slept in shifts to keep an eye on her.  Right after the storm she ended up hospitalized for a few days with a massive bladder infection which made her mental state decline rapidly. It was evident the minute she stepped foot in my house that she needed medical help that time. 

But for this Hurricane this past weekend she was at her assisted living facility with a backup generator and medical staff making sure she was safe. The medical director even told me mom shared her Coca-Cola stash with a fellow resident who was sad the Coke machine was empty.  As for me I spent most of the storm sleeping.  I guess the weight of my recent burdens were lifted for a moment and my body decided it needed some healing time.   

Today I visited mom to make sure she was safe.  The facility was on backup generator as the power was still out, but my mom was in good spirits.  Up until the last three visits she has refused to get out of bed when I'm there.  I had her doctor change one of her medications and I think it's helping.  She was angry I stole her shoes.  She had two pairs of Crocs and she slipped on the stairs a few times.  I bought her some laceless Keds which she hates, but are much safer for her to wear.  She entertained me with stories about how she was planning on marrying a guy named Larry who lives upstairs, and how she changed her mind and he found someone else.  I told her I didn't realize she was dating, to which she replied, "we weren't. I was just going to marry him."  She was thankful she didn't marry him because he was into lots of sex.  She also mentioned the newest activity there is "panty raids" led by Larry.  Strange since it's an all female facility.  I gave her a much needed manicure and pedicure (complete with a baby wipe foot bath).  The second one left me desperate for a shower.  Must remember to show her doctor her feet next visit.  Then mom crawled back in bed for a nap before dinner.  Before leaving I asked the medical director who "Larry" was.  Turns out he's the son of one of the residents and he'd just stopped by for a visit last week.  I asked them to keep and eye on her and to please make sure she washed her feet next time she showered. 

This week my plan is to pay attention to my kids before school starts next week and I don't see them as much.  Then start working again on all the fiduciary work I have waiting.  More on that fun next 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.