Update On Mom's Health Dec 2012

After a very difficult summer I'm happy to say my  mom is healthier than she's been in a while.  Her up days are more "up" and her down days are less frequent.  I'm able to occasionally have coherent adult conversations with her.  The tremors haven't gone away and can be worse at different times of the day.  She is unfortunately on a cycle of a urinary tract infection about once a month.  We are pushing liquids more for her, but she's unwilling to ask the staff at her ALF for help in opening water bottles so I'm not sure what to do.  I can't be there every day to make sure she drinks.  Her doctor didn't want to give her something to prevent the UTI's, because he was concerned about immunosuppression.   So for now we'll push fluids and hope for the best.  At least now her primary care physician allows me to call in and report her symptoms and he calls in antibiotics so I don't have to drag her into the office every time we see symptoms.

For those who may not know or remember UTIs in older adults, especially women, can cause confusion, lethargy and a general decline in mental ability.  Unfortunately the mental decline due to her schizoaffective disorder and the permanent Tardive Dyskinesia caused by Haldol also contribute issues with hygiene that fuel the infections.

For now she's been out of the hospital longer than she has in the last several years and I feel her psychiatrist has finally found a medication combo that is helping her.  She sees a neurologist in January who may be able to help get more control over the tremors.  That isn't without risk and I'm hoping that doesn't land her in a psyche ward while we try out medication changes.  I really wish there were more options for outpatient help during times like these.  Funding for such programs were cut years ago.

For me, I'm still working on the house sale, but things are slowing down a bit.  I decided to turn to advocacy, but as I've found you have to be careful who you turn to.  I found out about a group that advocates for elderly psyche patients.  Well, they say they advocate.  I told my mother's psychiatrist I was going and he scoffed and said he used to go, but the group only managed to get gero psyche beds reduced so they aren't very effective advocates.  I was told to come and briefly plead my case to them only to find them apathetic and definitely not interested in improving things.  The rumor of more beds at a particular psyche hospital couldn't be confirmed by those in attendance who work at the facility in question.  When I attempted to discuss my concerns I was cut off and told to talk about it in private.  I was invited to talk about these concerns so I was very irritated that they couldn't take time to listen to the issues I was bringing up.

So I'm trying other avenues, but am feeling like change in the Virginia mental health system is a pipe dream.  If anyone cared the wheels would be turning.  Right now they are rusted shut.

On another note, my doctor has told me he feels I have a mild depression going on.  Not really a surprise with everything happening over the past few years.  I'm wondering if there's even been a time in my life where I haven't been at least a little bit in a depressive state.  I've been ordered to take time for myself.  I'm trying, but it's hard.  The first thing on my list is to try to let go of the guilt of not being able to do more to make things better for my mom and others dealing with mental illness.  It's not a battle that many people feel is worth fighting and without homing beacons I don't think I can find enough people who want to help to make a difference.

I'm going to go eat some chocolate and read a cheesy novel.  I think I'll make more progress that way.

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....

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.

Dadadadaaaa Super Coper

It's been a while.  Finding two minutes these days seems to be a monumental task.  It's 11pm and I'm just now getting to making dinner.  But it has been a good night and that's been a bit rare these days.

My mom has been getting worse recently.  She's confused and forgetful.  About a month ago I took her to Patient First because I suspected another urinary tract infection.  For those of you who don't know apparently urinary tract infections can affect even the most stable brains. Mom was hospitalized last August because of a UTI and I was trying to avoid that.  Her psychiatrist had planned on changing her medicine at that visit in hopes it would work better for her, but that was put on hold till she was stable.  I faught her about going to the doctor, but since she was in my van and couldn't really walk home she relented and went in.  Of course my suspicions were right and the doctor described it as a "raging UTI."  Lovely.  The doctor said he couldn't evaluate her confusion, but suggested she would be fine in a few days and if I were really concerned to head to the ER.  When we arrived at her house mom turned to me and said "well, now are you going to admit there was nothing wrong with me?"  Um, yeah nothing but the raging UTI, caused by your lack of good hygeine, that's affecting your mental state.  Are you kidding me?

After she finished the antibiotic she actually said to me "I should have listened to you.  You were trying to help and I should have let you."  That made it worth it, although I know I will probably never hear those words again. 

A month later she is showing signs of another UTI.  It's been a rough month with the flu sending both my sister and me to the ER and me staying for 4 days for tachycardia and asthma.  It shows me how difficult life can be.  God, any time you want to make it easier just go ahead.  My younger brother has been helping recently so that's been really wonderful.

Tonight I went to a presentation on Dementia by EVMS and Sentara.  The speaker was Soo Borson MD who is a Psychiatrist who specializes in Dementia.  I've long suspected mom may also have Dementia with the Schizophenia.    In talking with Dr Borson I learned that Schizophrenics often have a form of Dementia that is different than any other form of Dementia and the onset is generally around the age of 60.  Mom is 64.  When I described the symptoms she agreed that it is probably Dementia.  So mom has an appointment with her primary care doctor tomorrow to be evaluated and to check for another UTI.  I got some resources to look into as well.

But the best part of tonight besides getting answers was at the end.  I wanted to thank Dr Borson for her help and she said to me that I was definitely what she called a "Super Coper."  It's what happens to people if they've had to deal with this from a young age.  She said she could see it with my first question. 

I don't know.  It just made me feel like I should be wearing a cape.

The Arizona Tragedy

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

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

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

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

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

The long, long journey

Well it's been a long while since I was able to post and a lot has happened.  I've found myself running from one place to the next trying to help my mom with all her needs and somehow meet the needs of those around me as well.  I feel like I'm falling far short of my goal.  It seems like the more I do the more things there are to fail. 

I came to the decision to not coach soccer anymore.  I really loved the girls, but the adults were a bit too difficult to deal with.  And since my daughter does not seem interested in playing anymore it made the decision easier to make.  I will miss it, though.  But it was one thing I felt I wasn't great at doing.  That gives me an unfinished feeling that I hate.

So in the past few months my mother has been through a roller coaster of health. She seems fine some days, but other days I wonder if I should put her back in the hospital.  It seems the most simple acts are impossible for her these days.  She desperately wants to stay in her home as long as possible and remain independent, but I feel she is past her ability to take care of herself to really any extent.  I'm predicting she will be in an assisted living facility within the year.

We hired an aide to come in 3 days a week to help mom with bathing, cleaning and medication.  The first one was a disaster.  The second one was better, but since the company who hired her failed to provide her with instructions and also failed to notify us of the change she was flying blind the first two weeks.  We hired the aide to help my sister and I out and give us a break as far as caretaking.  Some days I feel it just causes more stress because there is always a concern about what the aide is doing there. 

The bigger concern now is that my mom often refuses to eat enough, drink enough, visit the facilities enough or allow anyone else to help her with those things.  There are many times when I visit I find her so dehydrated I consider taking her to the hospital.  After forcing a bottle of water in her she usually seems better right away.  It's amazing to me that she wouldn't do those basic things she needs to do for her health.  I ask her why and she often says she's worried about bladder control.  She often refuses to use the restroom and I feel most of her bladder issues stem from that.  She won't let the aide bathe her so from time to time my sister or I will force her to wash.  I hate doing that at her house so whenever we are at an appointment or for some other reason at my house I throw her in the shower.  She hates it, but I just ignore her complaints and get her clean.  I try my hardest to respect her privacy, but she does need to get clean.

But one good thing happened. My mother finally signed the financial Power of Attorney.  That has taken a huge weight off the family's shoulders.  I was able to have my brother come in and fix a permanently clogged kitchen sink.  She had threatened to call the police on him (like she did to my sister) and try to get him arrested so he was too scared to help out in her house for fear he would end up in jail and lose his security clearance.  With the POA giving me the right to hire people for repairs in her house it gave him enough protection to complete the work.  She spent the day at my house just in case though.  I'm in the process of trying to find someone to fix the ductwork under her house so that we can get her heat working.  It unfortunately collapsed and blocked the remaining ducts enough the heat shuts down after a few minutes. It's been slow getting someone out there and with temperatures heading down I worry about her in that house.  She has several space heaters, but refuses to turn them on for fear it will start a fire.  She does have some mysterious electrical issues going on, but for the most part things are safe.  Right now it's fix the heat first then work on hiring an electrician. 

So the next thing on the agenda is to have her sign the living will and the medical power of attorney.  I'm going to file for disability and medicare as soon as I can.  At least before she realizes what I'm doing and tries to stop me.

Episode 4, healthcare debate

Today I went to visit my mom.  She's starting to regress a little.  For a short time she was taking her medication exactly as prescribed.  I got her a massive pill dispenser that broke down her meds into specific times of the day.  Even though it is just morning and evening she seemed to need something that said "morning" and "evening" for her to remember which ones to take.  She missed two doses since yesterday, though and her mental state was already in decline.  Christina has been working hard to find mom a nurse that can take care of some basic needs during the day.  Unfortunately mom can't afford too much so we are limited in what we can get for her.  I'm thinking an assisted living will be where she will end up, but cost and her willingness to go are big factors.

So today Christina and I talked a little bit about the healthcare changes going on in this country.  She is concerned that because she doesn't have insurance she will end up paying a fine.  That won't help her get coverage and will just make it harder on her family.  I've always been deadset against Universal Healthcare.  I've dealt with military hospitals and the level of care you get there.  I've heard Universal Healthcare is worse than that so it has me scared.  But the more I'm dealing with these roadblocks in getting adequate care for my mom the more I'm liking the idea.  Well, "like" is a strong word.  Maybe "tolerating" the idea is a better way of saying it. 

I've found it hard to believe that they (society, the government, health professions, etc) let my mom and people like her out in the community when they aren't able to make decisions for themselves.  It is obvious we aren't doing enough.  America seems built on the concept that everyone should "pull themselves up by their bootstraps," but the most vulnerable members of our community get left behind that way.  My mom's case manager told me that she sees so many heartbreaking cases.  There are many patients she sees who are homeless and she can do nothing about it, because it is their right to be homeless. 

Rights are incredibly important, don't get me wrong.  But at some point when a person is too mentally gone to make important decisions about medical care and living conditions don't we have the responsibility to help them, even if they don't believe they need our help?

Hopefully soon we will be able to start the guardianship process.  I admit I am too chicken to start it on my own.  I'm looking into organizations who will walk me through the process.  It's either that or work at McDonald's or strip to come up with the cash for a lawyer.  Of course after two kids and too many cheeseburgers I doubt I'd make a dime stripping.

I started calling my legislators.  My delegate Bob Tata has been the most helpful.  His assistant Vicki has run into the same road blocks I have, but is looking into all the legal options we have as for as guardianship or POA.  She even suggested that maybe Del Tata can look into writing a bill to change the laws if they need to be changed.  I won't hold my breath, but at least it seems like someone in power cares a little. Meanwhile I'm looking for help to walk me through the process.  I need to get started.  Every day that passes is one more day I can't help mom.