Goodbye 2011! Don't let the door hit you in the butt on your way out!

This is probably the best time of year for me.  The business of Christmas is over with and we ready to put the troubles of the past year behind us and move into the New Year.  Although I am expecting this next year to copy the past two years I will try to remain hopeful that things will change.  Without hope no one would get out of bed.

So here's what I wish for everyone out there for 2012!

I hope our lives find balance and when we have trouble finding it on our own that good friends help us navigate our way back.

I hope that everyone gets the mental health treatment they need regardless of cost.  And remember a good friend is always around the corner when you need him/her.  Sometimes you just have to search a little further and sometimes you never knew who that friend was till the very moment when you needed him/her.

I hope the politicians who decide budgets remember that those who cannot speak for themselves are not invisible.  

I hope everyone reading this takes time for themselves and remembers that they are important.  Everyone makes a difference in this great world we live in.  You matter more than you will ever know.

I hope everyone remembers that the people around you are important too.  Using your turn signal, letting that driver in front of you at the exit ramp, picking up litter in the park or holding that door open for the person carrying so much makes a difference.  Let your love for other people show.  You might just make their day.

When you need a friend, find one.  Someone is always close by. They just have to know they are needed. And someday you might just find that you're the one someone needed.

Reach out to a friend in need.  And listen, just listen.  It is harder than you'd think, but it's more valuable than anything you could buy, borrow or steal.  

Goodbye 2011 and Welcome 2012!

Teaching My Daughter

My daughter is almost 8 and I've started to notice it's time to teach her the basic things of being a girl.  You know, the things that your mother teaches you as you go along so you feel ready for the transition to womanhood (and eventually motherhood)?

My mother never taught me any of that.  She was too busy running from imaginary soccer mom assassins.  A point for you, schizophrenia.

My older sister taught me a few things.  She taught me things like if you wear Chapstick you should smear it from your nose all the way down to the tip of your chin.  She would buy beautiful clothes for me in her size.  She wouldn't allow me to put on my makeup in the bathroom (although she did because she needed hers perfect), then she would laugh that it came out all streaky since there was no light in my room.  Hmmm, maybe those weren't the right things after all.

So I've gathered tips through the years on the right way to teach her things and I'm working on starting the process.  I've already taught her the basic things she needs to know, like using a spray bottle to help brush your hair in the morning to keep it from sticking straight up, flossing, brushing her teeth and not using soap in certain areas of your body, and of course the most important "no one touches you without your permission" talk.

I'm working on a bigger library of tips. A friend taught me a tip to get the tangles out easier by using a few drops of olive oil and combing it through.  Works like a dream.  I'll have to devote more time to research.  We aren't far from talking about bras and boys and my information stores are woefully low.

You may have taken my mom from me, but you didn't succeed in taking the mom from my daughter.  So that's a point for me, schizophrenia.

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!"

For Once Hospital Discharge is Full of Hope

I got word today that my mother will be discharged from the hospital tomorrow.  Now usually at this point all the family members are scrambling, I'm on the phone with the hospital social worker begging for more days.  The phone lines are all busy and I have two people on the phone at a time.  This time mom appears to be better than I've seen her in years.  I think she's ready to be out of the hospital.  Plus this time (unlike all the other times) she's going back to her assisted living facility, so there is someone there to keep track of her meds and make sure she's been bathed.

But I think what makes this time different is that we saw actual improvement in her.  We didn't feel like the doctor was just doing everything she could to quickly stabilize her and send her on her way because another more needy person was waiting for the bed.  I hope my mother will continue to improve.  The last time she was in the hospital we were told to just expect her confused, depressed, delusional brain was her new baseline.  Like that was supposed to give me some warm fuzzy feeling about her care.

Instead of receiving hospital care that feels formulaic and impersonal, as if the doctor were treating a simple infection or a broken bone, she has received personalized care.  The doctor this time, it seems, spent time figuring things out and really asking specific questions about how my mother has been over her kids' lifetimes.  As a result my mother has received a new diagnosis.  One that explains all the ups and downs of my childhood and the reason why she does well for only a few months at a time until the depression takes hold and fuels the psychosis and she ends up back in the hospital every few months.

Her new diagnosis is Schizoaffective Disorder. For my mother it is basically schizophrenia plus bipolar disorder.  It explains why she spent all of the 1980's and most of the 1990s in bed, book ended with occasional bursts of compulsive shopping, cleaning and calling the 700 Club. This change in diagnosis means changes in medications and hopefully a better "baseline" from which to draw.  The unfortunate thing about it is that it can look like dementia.  So, the question becomes does she have dementia or was it just Schizoaffective Disorder.  It complicates things since we have a long family history of the disease.

I am thankful for this more clarified diagnosis and I really hope it means things will improve, but this has brought out painful memories for me.  I haven't been able to help myself in brooding in the childhood I experienced.  If only someone could have helped her then would my siblings and I experienced a childhood filled with sports teams, dance classes and wonderful family memories?  Was there a chance for something other than a childhood full of darkness and anxiety?  It's hard to let go of the past when it affects the present so much.

I saw mom a few days ago and I can't tell you how much she's improved.  Of course there are still delusions.  She told me and two of my siblings that the doctor did a CT scan and found she had multiple strokes and suffered permanent brain damage.  The doctor never had her undergo a CT.  She only tells these delusions to family.  Makes it that much more difficult to find people to help.

I'm hopeful for this next stage of the journey, but we've been here before and nothing improves.  They say the definition of crazy is doing the same thing over and over again and expecting different results.  And we've been at this point many times only to be set up to fail all over again.  But without hope you can do nothing but give up, so I'll hold on to every scrap of it I can find.  What choice do I have?

Things You Should Never Say...

Since things are calming down I figured it was time for a post on the lighter side of things.  I use comedy a bit to cope with things.  Not that this is a funny situation, but if you don't laugh schizophrenia wins.  So here is a list of things I've heard this week that you really should never hear.  And some things that should never be said in a psyche ward.

"The doctors will slice and dice you and you have to trust they'll do it right." Overheard sermon from a Pastor who clearly needs a lesson in tact.

"You can't keep your chicken in there!  I'll keep it safe right here with me!"

"I'm not responsible for someone from my agency telling you wrong information."

"Are those cops here for me." This one should just never be answered.

"You want the kind of mother who will brush her hair and brush her teeth and I'm just never gonna be that kind of mother.  You have to learn to live with that!"

"What kind of meat do you think that is?  It looks like turkey, but smells like pork.  Why don't you try it?"

"My nipple fell off once.  I stuck it back on." I blame my job for walking into that one.

"Remember, if you're going to have sex in a park take your name badge off first."

"Is that Kyle?" "No, it's my mother." "Are you sure?" "Quite."

"I wake up every morning and want to kill myself.  That doesn't mean there's a problem, it just means I'm a little bit sad."

"I'll execute this one while you execute that one."  This was a police officer referring to filling out two sets of paperwork.

There you have it.  Anything you've heard recently that just should never be said?

November 2011 Hospitalization Update

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

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

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

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

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

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

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

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

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

Who Really Is the One Who Is Crazy?

My mother has been decompensating over the past two months.  Her mental state has been slowly declining and her psychiatrist has said he cannot do anything for her on an outpatient basis.  She needs to be hospitalized. So at her appointment we came up with a plan on what to do if her delusions did not improve.  It  included the old standby of calling Emergency Services of whichever city she is physically in.

Those of you who have been through this process you know that having someone hospitalized for mental health reasons is never an easy process.  If things aren't emergent I look at my schedule and figure out a time when I have two full days to devote to just the process of getting her admitted to a hospital.

It's supposed to really go like this.

Contact Emergency Services and explain the situation
Emergency Services comes out and evaluates the patient
Emergency Services decides patient needs to be hospitalized and calls to find a hospital bed that's available
Patient is usually held in an emergency room or magistrate's office until the bed is available
When a bed becomes available the patient is transported by the Sheriff's office to the facility to receive treatment.

But it never works that way.  Usually my mother ends up needing to be medically cleared before the mental state can be evaluated.  Each time it takes about 24 hours or more to complete this process.  It's aggravating and time wasting and down right painful to go through.  It usually ends with watching my mother be shackled and put in the back of a police car.  Never something you want to see.

This time was more painful than usual.  Well, I shouldn't say "was" because it's still ongoing.  And we passed the 24 hour mark 7 hours ago.

On Saturday my mother was acting very strange when I visited her so I decided it was time to put her in the hospital.  She was saying her doctor and the people who work at the ALS she lives at were trying to kill her.  She was whispering to herself and acted clearly confused at what was going on.  She wasn't giving the staff any trouble, but I've seen these signs before and I know it will only get worse.  I had my kids with me so I couldn't do anything right then.  I decided to wait till the next day to start the process.  It was also so I could get a good night's sleep before the grueling ordeal begins.

I called on Sunday at noon and was told by the very unsupportive man at the Norfolk CSB that they would come to evaluate my mother, but to not bet they would believe she needs hospitalization.  I was told I needed to hurry to her ALS because I'd better be there when they got there.  There was no promise of a time frame.  I hurried.  When I told my mother someone would be coming to evaluate her she gave me this horrible look and gestured to hit me.  At 4pm I still had not heard from the NCSB so I called to see what was going on.  The woman answering told me that she'd told me several times already that my mother's doctor wouldn't let her go to the hospital.  I told her I was sure she was confused as to who I was (I hadn't even given her my mother's name) and it took a bit to convince her that yes, she had confused my mother with another patient.  I was informed they were not coming because only the facility could call and invite her in.  Of course since the facility didn't witness her behavior if they did call the concern would be dismissed.  I informed her that she embodied everything that was wrong with the mental health system in Virginia.  It clearly sounded like it wasn't the first time she'd heard that.

So, with no other real option, I drove her to the emergency room at Norfolk General.   I was met with a wonderful nursing staff, but a doctor who informed me that for geriatric psyche patients they can only be admitted to a facility 8 to 5 Monday through Friday.  This was Sunday.  I was told I should take her home.  To do what, I have no idea.  But I've been around the block a few times and I know that if you go home and come back the next day you only increase the cost and lose your place in line.  So I refused.  The Norfolk CSB informed me I should not have come and that I should have done it their way (refusing to evaluate her at all is apparently "their way.")  I was informed that the CSB worker at the hospital was present during my "many phone calls" and he knows I was told to talk with her doctor first.  I must be falling asleep and calling these people because I remember only speaking with them on two occasions and I don't remember them telling me to call her doctor ever being part of the conversation.  He said they had a big file on her and then later said they seemed to have no paperwork on her.

We were informed she would be admitted if there was a bed in the morning and we could avoid the temporary detainment order (TDO) which would save a step.  Then in the morning we were informed that she would have to be reevaluated and placed under TDO.  Seems no one at the Norfolk CSB has any clue.  NO wonder I've been told to avoid them at all costs.

Since she has insurance and we have guardianship I asked the doctors if we could just avoid even dealing with the CSB, but it isn't possible.  It's the way things are run.  And because of budget cuts there are less and less psychiatric beds available and longer wait times in the Emergency Room waiting for one to come up.

So my mother is waiting in the emergency room waiting for a bed.  It is 730pm on Monday and this whole ordeal started Sunday at noon.  There is no end in sight and the nurse informed me that it would at least be a couple of days.  Thankfully the hospital did bring a psychiatrist to see her and changed her meds so it's not like she's floating.  But, she also isn't receiving the care she would receive in a psychiatric ward.

There was a man with Alzheimer's Disease waiting in the ER there as well.  His wife said they'd been there since Friday evening.  At 4pm Monday the hospital was promising him a bed, but it hadn't happened by the time I left.

With the aging population we have more of this to look forward to.  God help us all.

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.

Communicating Through Mud: it's not just for kids anymore!

I haven't shared a funny (ish) blog post in a while and since schizophrenia tries it's hardest to take the joy out of most things in life I feel it's long overdue.  So I will share with you what it feels like to be me these days.

Now I have a BA in Communication.  I feel like I'm a pretty good communicator.  I spend a great deal of time choosing my words carefully so that the impact I want conveys to the other party.  I help run support group meetings for breastfeeding moms, a delicate job in itself and I feel like I do a pretty good job.  What usually gets me in trouble is over analyzing what people say.  I remember the first meeting I led.  The wonderful person who trained me said "you did a great job! Gave lots of information!"  Now at first I felt proud that I had done a good job.  But then I analyzed...

and analyzed...

and analyzed...

and somehow I started to wonder if she really meant I did do a good job.  Did I talk to much?  Sounded too expertish? Oh My God I'm a FREAKING FAILURE!  THEY'RE GOING TO NEVER LET ME BACK IN THAT ROOM AGAIN!!!

Part of me thinks it's an asset to analyze so much.  But then I realize how much I'm reading into people's words or body language.  So people become big puzzles I have to put together in my head.  I have to hide when people discover I'm staring.  And since I can't open up anyone's brain and read her thoughts I never know for sure if I'm reading someone the right way.  Then I want to just avoid people because cats are just easier to read.  Yes I want to be THAT cat lady.  Life would be simple, yet full of fleas.

I manage okay.  I get through life being able to at least communicate a little.  I think at least half of what I say makes sense to at least half of people.  But I'm having my doubts on my abilities to even handle basic communication.  Recently I had a conversation with my daughter's teacher which started with me trying to find out why she was struggling in school and ended with me sounding like a horrible bigot in the teacher's eyes.  Is my brain going?  Did my unclipped tongue tie decide that now it was going to exact revenge on my speaking abilities?  Am I saying something different than what my brain thinks it's saying?  Did someone install a speech changer?  Am I getting dementia in my 30's?  Am I paranoid?  Why do I hear laughing?   Ahhhhhhhh!

But I calm down, drink some wine and I feel like I just overreacted.  Obviously I can speak and dementia in your 30's is unheard of, right?

Then cue the communication with my mother's assisted living facility and the doctors. I'm starting to feel like I'm talking through a thick wall of mud.  This was a conversation a few months ago I had with the director of nursing.

Me: "since we're having such a problem with the doctors signing orders is there something I can bring like a med sheet they can sign."

Her: "no, there's no such thing."

Me: "can you give me anything to make this easier?  I feel like I can't explain to them what you want."

Her: "no, there's nothing.  I'm just going to have to treat these doctors like children because they won't do their jobs."

So fast forward to today with the doctor.

me: "I know it's an electronic prescription, but I need something for the assisted living facility to honor the change in dosage.  Can you write something?"

Dr: "all right, I'll do it this time but next time they need to send you with a copy of the physician order sheets so I can just make the change and sign it.  Ask for it a day or two in advance so they can get it together and bring it when you come next time."

Me: "okay, I'll get them to do that, thank you.  Oh you didn't write the diagnosis on the prescription..." Dr walking into another patient's room

Me (to the nurse) "can you write the diagnosis on here.  They are going to hassle me when I get back."

Nurse: "no, they already know what it's for."

Me: (back at the facility) " here's the med change."

Her: "geez okay he needed to put the diagnosis on here."

Me: "I know. I asked and they said you had it.  He also said he needs me to bring the med orders or something with me next time."

Her: "med orders?  There's no such thing."

Me: "well, isn't it one of those sheets on your desk."

Her: "no, this is something else.  Did you get the physician order sheets before you left.(shows me what looks like the identical sheets I pointed to on her desk)."

Me: "uh no, I think that's what he wants.  You've never given me any."

her: "I've given them to you every time."

Me: "no, I think I would remember that.  I didn't know I should ask for it."

Her: "yes you should get a copy of the physician order sheet every time you take your mom to the doctor.  But I know I've done that for you before."

Me: "I can assure you I've never gotten one.  Maybe my sister has gotten one when she's taken our mom to the doctor, but I didn't know I was supposed to get it (didn't mention I felt like I had asked for the sheet before and was turned down)"

So I feel like there is some special language these people are speaking and I feel like I understand what they are saying, but when I ask for things not using their special language they seem to have no idea what I'm talking about.  When I say "med orders" it doesn't mean "physician orders" to them and I'm left not understanding why that isn't close enough.  Why do I feel like I'm in Spain again after 4 years of spanish classes trying to order ice cream in spanish and being looked at like I'm speaking feline?

Does anyone know if Rosetta Stone has a course in speaking "assisted livingese?"  I clearly need an interpreter or a basic course in "Annoying terms in the medical field you must get right or they will think you are a moron."  Maybe I can start writing on my arm when they talk so I can keep careful notes with exact terms.  Or bring in a stenographer.  Or maybe go to medical school so I understand it all.  Or maybe......

Does anyone have a spare straight jacket I could borrow?

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.

The Answer Doesn't Make Sense

Last Friday I told you about a situation that came up with my mother's assisted living facility (ALF).  We discovered that a 30 day supply of medication lasted 39 days.  The facility directors kept claiming they didn't know where the records from previous months were kept and that they'd have an answer for us on Monday (today 10/3/11). 

Well the answer today was that my mother was refusing medication.  Now I don't believe that for a second.  My mother is convinced that if she doesn't take her meds she will go back to the hospital and she'll do anything to stay out of the hospital. Last week the Director, the Medical Director and one of the Med-Techs showed me the September medication log that showed only that she had not missed a pill the entire month of September.  There was nothing on those sheets to indicate refusal of meds.  This information was on some other mysterious daily notes log that could not be located until now.  If she indeed refused 8 days of medications over the course of a month the family and the psychiatrist should have been notified and she would have been hospitalized.  Plain and simple.  

So today I was finally able to reach Norfolk APS who put me in touch with the Ombudsman for families communicating with ALF's.  The Ombudsman agreed something wasn't adding up so he's meeting us at the facility for a meeting with the Medical Director on Thursday to get some answers.  I'll let you all know how it goes.

But as it stands right now either way they have made a mistake, either through neglect, forgetting to give meds or just not keeping adequate records.  This could have cost my mother her life.  What a ridiculous bunch of people.

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....

Life Doesn't Stop So You Can Catch Your Breath

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

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

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

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

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

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

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

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

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

In Heath, but Not in Sickness.....

If you've known me for a while or been reading for a while one thing you  may remember about my mom is that she loves Pat Robertson.  She used to tell me all the time about how she met him a few times (he lives 30 minutes from where I grew up and down the street from my house currently) and how he laid his hands on me and prayed over me when I was a baby.  I'd love to ask him what he prayed for.

Mom also loved to tell the story about the day she got in her brown hatchback and decided she was going to go drive up to Pat's house.  It had just been built so I guess she was thinking she could get a tour.  She tells of how she drove down his long driveway past several gardeners working on the grounds who all stopped to stare at her.  Halfway down the driveway she says she realized he might think she was crazy if she showed up unannounced so she turned around driving over part of his lovely manicured lawn I presume and tried to leave.  She heard a scraping sound so she got out of the car and found a stick wedged in her wheel well.  The end of the stick had sharpened itself into a very sharp point.  She yanked it and and for some weird reason threw it in the backseat.  Shortly after she got home, she saw my brother with the stick as he was fashioning it into a bow and arrow set.  That made mom think that God wanted her there in that drive way to bring that stick home to her son.  Now when I would hear that story I would often think why would God want you to trespass on someone's property to create a very sharp stick to give to your son who was about five years old at the time?  I guess it's a mystery I will never solve.  God works in mysterious ways.

My mom would spend hours talking with the "counselors" at the 700 Club and often end up in yelling matches with the poor person on the other line.  This was a daily occurrence in our house for many years.  I found her membership card to the club in her house while cleaning out her things last week.  It amazes me that even though she called every day for years they never could get her first name right on the card.  They call her "Amelia" to this day in any mail they send.  For those of you who aren't in the know that isn't even close to her real name.

But if you've watched the news recently Pat Robertson told an audience member that if a man's wife had end stage Alzheimer's disease (a form of dementia - my mom has a different form of the same disease) he should be allowed to divorce and move on with his life (I'm paraphrasing it to emphasize the evil I feel is implied).  Now I get it's horrible to deal with someone who has Alzheimer's or any form of dementia.  I'm all too familiar with it.  My Great-Grandfather died of Alzheimer's.  We believe my Great-Grandmother suffered from Dementia towards the end of her life.  My Grandfather developed Dementia towards the end of his battle with Emphysema.  My Great-Aunt is living with Dementia.  I see the bulls-eye on my head already.    And I certainly wouldn't want to lay blame on someone for wanting out of that situation.  I'm certainly not blaming anyone from deciding they've had enough, but as with anything, there are consequences for those actions.

It almost seems to Pat that the greater crime would be to have a relationship out of marriage, then to divorce someone in their hour of need for your own self preservation.  I don't think he even realizes that when it comes to severe illness the well spouse may end up destroying what little life is left for their loved one by initiating a divorce.  It could cause the sufferer to lose insurance, may reduce the quality of care if the sufferer no longer has someone looking out for them and may make the sufferer's life that much worse during their final years on this earth.  If it were me suffering from dementia and I was to the point that I didn't recognize my own husband I would say throw me in front of The Tide to end it quickly.  Otherwise I can't speak for myself so I need you.  Sleep with anyone you want if you need that, but don't leave me in my hour of need.

I can see where Pat was kinda coming from.  It is awful and the poor man was suffering too, but if you preach marriage is sacred and condemn divorce then you can't then go say "oh, but if it's too hard it's okay to jump ship."  Just don't be a hypocrite about it all.  And for the record I'm not against divorce.  I think we run to it too quickly when things go wrong instead of working on relationships, but if that's what a couple chooses I would never stand in their way or make them feel guilty for choosing that option.  But there's something extra sleazy about someone who divorces their spouse because he/she got sick.

Remember Andrea Yates?  She killed her children because the voices in her head told her to do so.  Her husband, while knowing how sick she was demanded she home-school their children and said how deeply religious he was.  When she went prison and was awaiting trial he divorced her.  Now I know that was a hard decision to make, but I wonder if he ever considered that his wife that he loved enough to father children with still needed someone to care about her.  Does anyone clip her toenails when they get so long they dig into her shoes?  Does anyone make sure the mental hospital she resides in bathes her when she needs it and treats her like a human being?

Of course I've had a great crisis with my view of God for many years.  He just seems to want to dump on our family.  It would be nice if he could spread the wealth a bit from time to time.  But that's for another post.

I wrote an angry email to Pat Robertson and below is the email his rep sent.  At the very bottom you can see my original email to them. You decide what you think. Maybe I'm just too angry about my own situation to give anyone a break on theirs.  I own that and embrace that fault. Dementia, in it's many forms, sucks.  And I've received more than my share of experiences with it.  When my mother calls me names and tells me I never visit, or I never do anything for her, or I don't care enough for her it feels like a knife through my heart.  But I can't trade her in for a new mom and walk away.  The world just doesn't work that way.  And I hope to God it never does.  The world just wouldn't be worth living in if people became disposable like a CD when it starts to skip.



Thank you for sharing your concern about Pat Robertson's response to a Bring It On question about a friend's wife in the late stages of Alzheimer's.

Having had many close friends struggle through Alzheimer's, Pat has seen the devastating impact that it has on not only the spouse with the disease, but especially the caregiver whose quality of life also becomes completely debilitated by it.

The advice he offered was meant for only the most extreme cases, where the spouse is in the advanced stages of the disease (such as the woman in the letter) and the mental health of the caregiver is also at risk.


Pat acknowledges that this is a hard thing, saying, "This is an ethical question that is beyond my call."  He also said, "Get some ethicist besides me to give you the answer, because I recognize the dilemma."

We are including below the complete transcript, which we hope will clarify Pat's answer.


Transcript
The 700 Club Daily Broadcast
Tuesday, September 13, 2011


BRING IT ON

TERRY MEEUWSEN: Well, we have your questions from our chat room, and we'd like to take some time to address them now. Pat, this is Andreas, who says, "I have a friend whose wife suffers from Alzheimer's. She doesn't even recognize him anymore. And as you can imagine, the marriage has been rough. My friend has gotten bitter at God for allowing his wife to be in that condition, and now he has started seeing another woman. He says that he should be allowed to see other people because his wife, as he knows her, is gone. I'm not quite sure what to tell him. Please help." 

PAT ROBERTSON: That is a terribly hard thing. I hate Alzheimer's. It is one of the most awful things, because here is the loved one. This is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone. They're gone. They are gone. So what he says, basically, is correct. I know it sounds cruel, but if he is going to do something, he should divorce her and start all over again, but to make sure she has custodial care and somebody looking after her. 

TERRY MEEUWSEN: But isn't that the vow we take when we marry someone, that it's for better, for worse, for richer, for poorer?

PAT ROBERTSON: I know, if you respect that vow. But you say, "To death do us part," and this is a kind of a death. So that's what he is saying, is that she's like-but this is an ethical question that is beyond my can do to tell you. But I certainly wouldn't put a guilt trip on you if you decided that you had to have companionship, you're lonely, and you're asking for some companionship. But what a grief. I know one man who went to see his wife every single day, and she didn't recognize him one single day. And she would complain that he never came to see her. And it's really hurtful, because they say crazy things. 

TERRY MEEUWSEN: Well, they see things, too. 

PAT ROBERTSON: She finally died. I don't know what he's done. But nevertheless, it is a terribly difficult thing for somebody. And I can't fault them for wanting some kind of companionship. And if he says in a sense, she is gone, he is right. It's like a walking death. But get some ethicist besides me to give you the answer, because I recognize the dilemma, and the last thing I would do is condemn you for taking that kind of action. All right. 



The Christian Broadcasting Network 
http://www.cbn.com/
Prayer Center: 1-800-759-0700 



> On 14-Sep-2011 22:17:21 CBN.com wrote:

> CBN.com Feedback - Other
> ----------------------------------------------------------------
> Subject: Alzheimers
> 
> I am so angry. I can't believe that Pat Robertson would say someone gets a pass on morality just because his/her spouse has dementia.  My mother has schizophrenia and dementia.  She made the decision to divorce my father, but if it had been the other way around I would never ever forgive him.  My mother loved you guys.  I saw a taping as a child, my mother tells me I was blessed by Pat as a baby.  She spent hours on the phone with your "counselors." My life is hell now because of her illness.  No, I can't trade her in for a new "mom."  Morality doesn't end when times are tough.
> 

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.