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.