Monday October 31

Zack will be cremated today.  

Writing this is so difficult for me.  At first this blog was intended to just be a release... a cathartic venture....now it's so painful but I have to finish it... and make a "The End".  In the past year, as we struggled and never seemed to win even any small battles, I did have many premonitions that this thing would not come to a happy ending....but I also thought that was my negativity and bitterness about the situation blocking any possible light shining at the end of the tunnel....this reality that I'm in now....it's almost unbelievable.

Last Thursday afternoon...as the house quieted, Lucy, Jojo, my husband, and I sat on Jojo's bed holding each other...and I said, "I want him cremated and his ashes put in a beautiful place"....Lucy said, "Disney World".... I kind of chucked but told her "No....that's not allowed."  Both girls chimed in and said they do not want him in a cold cemetery...I was happy with that.  I told them,  "I was thinking out in our beautiful woods."  I was remembering the days I spent outside all summer soaking up the peace of the sound of wind blowing through those trees, seeing hot air balloons rise like blessings behind those trees, watching the miracle yearly as their colors change from summer green to reds and golds....and then the photo of those trees coated in the snows of winter that I posted here a few weeks ago....with hope that maybe by winter Zack will be well.   I want to be able to see the seasons change and know he's there...always near us, and surrounded by beauty. 

The girls loved that idea....and Lucy added that she knew just where in the woods.  We moved here when the kids were young.  Lucy was two and Zack was eight.  They would wander the woods in search of adventure and treasure.  One treasure they stumbled upon was a ramshackle tree fort.  Zack would climb high in the old oak and look down at the world....Lucy was too little.   He would wave, look down, and say "Hi, Lucy!" from up above...Lucy said he rigged her up something down below, on the ground, so she wouldn't be left out of the fort fun.  And there was a "moat" that he put a plank bridge over so she could reach the tree fort island  She thought so much of that effort she remembers it all these years later.   I loved the idea.  Zack was such a happy bouncy boy and such a thoughtful big brother.  

Friday we went to the funeral home to make our arrangements.  We ordered a marble vault for his ashes.  She asked me what color, showed me the samples, and I knew right away.  Dark green.  Green has always been Zack's favorite color.

We walked out to the little tree fort clearing on Saturday.  It's about fifty feet into the woods...following a windy path.  The small clearing is under the big old oak...there are birch trees and others...it's lovely and peaceful.  You can look up to the beautiful sky above so maybe I'll be able to plant some flowers in the spring....my husband is going to make the path more of a permanent walkway with either wood chips or gravel...and we plan to order a granite headstone in memory of our beautiful boy. 

Typing that out gave me a panic feeling.   I am really still half in disbelief.   When I talk about it, I hear wonder in my voice.... can this be real?   Every step we take toward the ending is painful....because it clarifies the truth for me.  My sweet son is gone for good.  No chance of getting well....no Christmas, no seeing Disney World again....no college,  no girlfriend, no pizza delivery.....Zack is dead.  His dreams are dead....

We will go through the steps this week...struggling to process this reality.... I know we'll get through it and be alright in time.  Thank you to all my wonderful friends that have been here for me..and continue to be.  Everybody asks..."What can I do?"  "How can I help?"....honestly there is nothing.  It's just a comfort knowing I have you all...and your prayers.  I felt them before, I hope I do again. 

 Like a blessing rising up ...a  sign of something special

To Be Continued.......

Saturday October 29

I spent quite a while looking at this blank blog entry area.  I am just quiet inside and numb.  My eyeballs hurt from crying and my head feels ready to split apart.  My sweet shadow Penny is lying at my feet snoring and lending me the comfort of her companionship.  She senses something is terribly wrong.  She witnessed what happened...and whether she understood any of it or not, she knows things aren't quite right in our house....maybe she's taking comfort from me.

Periodically over the past two days I'd go from piercing pain...sorrow...to numb...to almost alright.  When I'd feel that almost alright slipping in, I'd wonder what's wrong with me.  Then I'd pop over and read my short post from Friday....it would remind me how I'm supposed to be feeling now... and it would all come back to fill me up again....that despairing pain.  

What happened....it was a nightmare.

Thursday got away from me.  I had a lot of Disney work - it honestly does seem like when it rains it pours...I can go days without hearing from a client, and then other days it's call after call and emails and quotes.... That was Thursday.  I was also trying to wrap up cleaning for the party....and I had errands to run but I made lists instead, so I could stay near my phone in case the people from the mental health board returned my call.... I showered with the phone in the bathroom...it was that important to me not to miss their call.  They never called.

I was at my laptop in my office working on a quote when Jojo's bus pulled up.  Then it hit me - the time...it was almost 230pm.   I greeted and let Jojo in and then ran right upstairs to get Zack up...even for him it was late...I needed his help cleaning the kids' bathroom and vacuuming upstairs.  I opened his door and said a cheerful, "Zack! It's late...gotta get up!"....but he didn't even budge.   I walked closer to him...to the side of his bed.... I remember I looked at him....had a horrid thought...not possible.  I have never seen death before.  Never.   I got closer....he was so still.  I changed my angle... looking for movement.... I stood at the foot of his bed.  Praying...MOVE.   I said "ZACK"....then ran for the phone in my room.  Thank GOD there was a phone...half the time the phones are missing off the chargers... I yelled down to Jojo "I think Zack is dead!"..... I was in such a freaked out state of panic.... I was crazed.  I remember dialing 911.  I have NEVER dialed 911 before... I sometimes wondered if in a situation would I wait..think it's not important enough...or be able to know and decide if it was time to call 911... This was it...it was time.  I dialed they answered...asked almost lazily something about what's the nature of your emergency... I said in a choked voice - I could barely talk... "I think my son is dead".... she asked why I thought that... It's all kind of coming back to me now.... I told her he is schizophrenic, takes meds that make him tired...and I he never woke up..his lips are blue.  She asked my location... I told her... ran back into Zack's room while she spoke and I heard her call or radio emergency vehicles or services... I heard them talk to her... she stayed on the phone with me.  She asked me if I wanted to try CPR... he was dead... she asked me to try and feel a pulse.. I couldn't... she asked me to put my hand in front of his mouth and nose...did I feel breath... no.   I told her I think I'm going to faint..she said it's ok..I'm here with you...she asked if anybody else was in the house with me... I told her my 11 year old daughter....I yelled downstairs to Jojo to open and unlock the front door.... In the distance I heard sirens....

It was a nightmare.... I cannot get that last image of my son out of my mind.  Maybe that's why the inner numbness.  It's some defense mechanism.  I am getting the shakes typing this out... it's coming back to me so vividly....what I saw, what I said, what I heard.....

I knelt by Zack's bedside... kept my hand on his leg.  He had slept in his clothes from the day before...his favorite green hoodie, tee, and his khaki cargo pants....I just kept saying "He can't be dead....I can't believe he's dead"..... I couldn't.  I can't.  Penny was with me..she was nervous..and uneasy.. I remember her at my side but she was wiggly....panicking...  I had my cell in my pocket.  I texted my husband.  I don't remember what I texted and I think I need to erase them... I am so afraid to look and relive it even more clearly.....I think I asked him if I could call him... and said something very bad happened... he called my cell while the 911 operator was on the home line.  I told him, "I think Zack is dead"..... he was shocked and stunned...said a disbelieving NOooooo.... and I told him I called 911 and they are on their way... it was horrible... he said he was leaving work NOW... but he works an hour away.....

So as I knelt near my son,  I heard people enter...they yelled, "emergency" or something... and I yelled upstairs... they burst into Zack's room..three of them... and started pulling stuff out of bags... a woman police officer showed up and took me aside into the hallway and started asking me nonsense questions.... she said "Let's let them do their thing"....I heard them say he has a pulse... I was in doubt....I never saw death before...but I recognized it.   The woman officer took me downstairs...we sat in the dining room.   Not a few minutes later one of the EMTs came over and said "Ma'am.... we lost your son."

They offered me water or to call somebody or anything.... I was crying but in dumb shock.  There were so many people in my house.... coming going, calling, talking.....I forgot about Jojo...then I looked up and saw her bedroom door closed...and heard Penny bark.   The two of them had taken refuge together.   The woman police officer asked me more questions..then the EMT did.... there was a second officer there suddenly... and she heard me mention my son had schizophrenia...she seemed to know about it...and I took solace in that...she understood..and she had compassion...somehow I wound up in the kitchen, sitting at that table.  The EMT had calls to make...more people came into the kitchen.... somebody mentioned this is like stuff you see on TV.   I don't watch those shows.  On purpose.

I was asked a ton of questions about the meds Zack was currently taking, doctor he was seeing, his mood, when I last spoke with him.....then I was in Jojo's room with her.  She was sitting on her bed sobbing.... we held each other and listened to the sounds around us...outside her room.   Penny was with us....guarding the bedroom door.   We could see all the emergency vehicles out of Jo's windows.....so many sheriff cars, an ambulance, firetruck... an unmarked car...a SUV sheriff car....people coming in and going out... lots of commotion.  I felt a momentary lull in my sorrow and I called my soccer mom friend...I told her what happened...and to please make sure the party was canceled... she was a wreck hearing my news...and at the same time offering me support.  Then I got a text from my neighbor - the one I walk with once in a blue moon.... she must have come home from work.  She saw all the emergency vehicles... wondered if everything was alright... I texted her "No... Zack passed away".... she wanted to call me...so I told her to call my cell... we cried together while I held Jojo's hand.

My husband walked into Jojo's room.  She wanted her dad.... she had asked me, "When will dad be here?"  I don't even know if he made it home quickly.... it was such a blur...but he walked in and we all held each other...there was too much to process...so much going on.... but we knew our son was dead. 

Lucy was at school... she had stayed after for speech club.  I didn't want her walking into this environment not knowing what was going on... my husband offered to call her.  We really should have thought about what we were going to say...he got her on the phone and said, "Something very very bad happened at home"....and she got panicky.   Of course.   Then he said "Zack is dead"..... why oh why.... men.   The phone got disconnected.....it was a mess and I don't even remember what happened next or said... I know he called her back and offered to go pick her up but she instead got a ride home with her boyfriend. 

She walked in crying as I was being called downstairs to be quizzed by a detective.  At that time, also, the people from the coroner's office showed up.  Another officer wanted permission to search Zack's car...so I signed paperwork for that.   The detective questioned me... the coroner asked me things... mostly about his meds, doses, which doctor he saw, phone, address.... the detective, he wanted to know if there was a possibility of Zack having met a drug dealer, or had friends drop drugs off..what drugs Zack ever used... did he use his cell to call friends a lot..... hello!?! The kid is schizophrenic...he has nobody.  No friends...no connections, no fun...nothing.  And the guy seemed to doubt that. 

My husband came down and told me the girls needed me.... so he took my place at the inquisition... I went up to cuddle my daughters and Penny.

It was hours before everybody left.  I think it was probably 530pm or so before the house was quiet....then the silence hit hard.

I remember being so cold and not being able to stop shivering......the four of us talked a bit more..shared memories of our Zack....held each other and hugged in Jojo's room.... then moved down to the family room....we all sat together on the sofa for a while... I don't remember talking...I remember shaking.  Jojo rubbed my back....always the little mother.    My husband and Lucy decided to go pick up dinner for us.  I wanted nothing....Jojo stayed with me, hugging and holding.....

I felt so guilty..I shared my thoughts....why didn't I wake him earlier?  I usually wake him by noon.... what happened today?!?! What if???  I have that in me now.....but the girls both said not to feel bad... he loved to sleep.  That's how he spent his day.  Sleeping, smoking, and eating.... he was happy he did not have his group so he could sleep.  And it's true... but I have those what if thoughts.... and why....

We are heartbroken.  The pain comes in waves.  I do think we have in us some sort of protective mechanism...I don't think we could handle the pain in one lump sum....we are feeling it little by little.  But even in small doses it sometimes feels like gut wrenching physical pain...other times it's just hurt and sorrow...regrets...and guilt.

To Be Continued......

Friday October 28

my son passed away yesterday.  he never woke up.

i'll write more when i know more...i have few words now.  sorrow grief regret remorse shivers and fear.  that's it.

Thursday October 27

Exhausted.

I had some bad sleep last night.  I woke about 315 am to the sound of wheezy snoring.  At first I thought it was my big cuddly Penny....she always gets blamed for snoring - and any other mystery noise or commotion in the house.  Poor Penny...but usually she is the guilty one.   I could see the dark shadow of her fluffy self lying sprawled on the floor next to my side of the bed... I whispered her name...she rolled over as I hoped she would and sighed at the same time I heard that odd snoring again.  It wasn't Penny.  Next thought was my husband.....but the sound was coming from the other direction.  Couldn't accuse him. 

I decided to just close my mind off to it and get back to sleep.  Not ten minutes later, and me almost dreaming, the noise woke my husband.  Big surprise.  Nothing usually rouses that guy.  No baby crying....no child vomiting.... no fire in the house...not tornado sirens.....He could sleep through any commotion....usually....except it seems he has a lower tolerance for any disturbance Zack causes.

He asked me if I hear that....yeah I do.  He asked if it was Penny.....poor Penny....she is a convenient one to blame apparently.   He, unlike me, couldn't just shut the sound out and fall back to sleep.  He got up to investigate.   The noise led him to Zack's door.  As he opened it I could hear the snoring much louder....very deep and then wheezy.  I listened as my husband attempted to wake Zack or at least get him to flip over or something.  No success.  I actually felt panicky as I heard him go from whispering, "Zack" to semi shouting, "Zack...wake up".....there was no rousing him.  Zack was breathing steadily.... so I took some comfort in that.  My husband gave up.  I heard him close Zack's bedroom door and walk back into our room.  He said to me as I feigned sleep...trying to calm myself,  "That kid is not well".....Yeah, unfortunately I am aware of that.

I asked my husband, what does he mean by saying that.  He used a nasty tone of voice... aggravated, and it set me off.  I told him he sounds "cruel".  He said Zack was lying there all bent and twisted...he didn't understand how Zack could be comfortable in the strange position.  And he said he couldn't get him to wake up.   I didn't appreciate hearing any of that, but I explained to him it's the meds.

I am trying so hard to accept the way my husband deals with Zack and his illness...trying so hard to be a good wife and have the happy home life and marriage we used to have....but it's times like this, when his frustration shows itself, that I see my husband in a different light.  He has always been so kind to me..forever treated me like a princess....but Zack....these situations through the years have tainted my view of my husband.  The history of their animosity goes way back.  We had Zack when we were very young.  My husband did not want a baby at that time, and was resentful about Zack making an appearance.   I carry that knowledge with me.  That information and select memories cloud my view of my husband's interactions with my son.   If Zack had been welcomed by him with joy twenty one years ago, I believe I'd look at their current relationship so much differently....but I know the sad secret and that ruins it for me.  All these years and I'm ashamed to admit I am still resentful of my husband.  Twenty one years did not heal that wound...it mutilated it.  I realize everybody handles things in their own way.  Obviously I am far from perfect.   But Zack is our kid....Twenty two years ago, I was overjoyed with the news of a baby.... and I wanted him....his illness isn't his fault.

Left in the dark, contemplating the wheezy snoring, bent up sleeping position,  my husband's attitude....and having growing anxiety about going away for five nights knowing Zack sleeps like the dead, kept me awake....while my husband snoozed.  Lying there,  I made up my mind to call the mental health board.

I did it.  I called.... and wound up leaving a message.  I don't even remember what I said because I was nervous..I was shaking when I hung up.....probably that desperation peeking out...maybe they will hear it in my voice and it will matter to them.   I spoke with Abby again yesterday. The doctor is out of the office today so Zack will go to TAPS next week Tuesday and Thursday and see Dr. M one of those days....then that's it.  He will be directionless and on his own.....as will I.

I have errands to run today but I am sticking close to the phone...praying for a return call before the day is out, and a sympathetic ear.  I need somebody with understanding along with the power to help.  Abby and Gary both grasp the bind I'm in with Zack, but  neither of them have ideas for me.  I let Abby know the reasons I had not already placed the call and she helped me out with what to say.   "I have exhausted all of my resources."  

To Be Continued....

 Zack 2003...my happy bouncy guy

Wednesday October 26

I started a post yesterday but got interrupted so many times nothing seemed to flow so I threw in the towel.  I saw a great quote on Face Book very early in the morning - about continuing to hope and I copied and pasted it here...that hopeful quote was going to sort of be the theme of my post on Tuesday... and then somehow it was accidentally deleted.  A sign? 

I started off the morning yesterday by forcing myself to call Gary at Thresholds.  I am always so nervous to make these calls....uncertain of the reception I'll receive.  A few times I've come across people that work with the mentally messy that seem a bit "off" themselves.  Gary wasn't available.  I wound up leaving a message.   He returned my call much later in the day. He turned out to be a nice guy, easy to talk with, and we had a comfortable and informative chat.

Unfortunately Thresholds will not work out for Zack any time soon.   They can only bill medicaid....we have to wait until all those public assistance ducks are in a row before their group homes would be a possibility...then there may be a hideous waiting list.  Gary did not answer me straight regarding the current wait.  People live in the Thresholds group homes indefinitely.  Some only a few months...others for their entire lives. 

Gary told me that once Zack gets SSI, medicaid will have to approve him.   And he told me Zack would be denied for SSI.  Sadly, he sounded sure of it.  He gave me the name of an attorney and strongly recommended hiring her and appealing the denial decision within 60 days.  If you miss the 60 days you have to start the entire process over from the beginning.  I have been given mixed messages regarding the SSI approval.  Alaina thinks it may go through the first time due to Zack's hospitalization history.  I have no choice but to patiently wait out the next three to five months...with hope.

Gary was helpful and kind.  I told him about Pioneer...and Zack not being "group appropriate".  He asked why...and it hit me..that woman only met Zack for about twenty minutes.   And I told him that and his reply was, "Oh God!"...and he asked why she thought that about Zack.  I guess it's the anti social?  I'm not really sure why else...Zack has been welcome in our home because he really is a nice person...I let him know that.  He also suggested Alden Terrace, though, as an option.  He did admit Zack probably wouldn't like it.   No...Zack would hate it. 

I mentioned the name and number I was given of the big wig on the mental health board.   I did not place that call yet.  I don't want to get anyone in trouble and again....fear of the reception I'll receive from these people.  I'm not a fan of confrontation.  The whole adventure is stressful and unpleasant enough without being interrogated and shot down... or brushed aside again.  I guess not placing that call gives me an excuse to have this mental health board contact as a little secret hopeful back up plan in my pocket...a possibility to hang onto while I'm feeling there's no way out of this mess.   I'll have to work myself up to making that phone call...I need to do it.   Gary told me I wouldn't get anyone in trouble.  He explained the mental health board has funding and if they give a lump of money to either Thresholds or Pioneer and say, "Take care of Zack" they would find a way to make it work.  So maybe there is some potential for help if I can  get over my anxiety about placing that call and just do it.  I'm not sure what to even say......

I spent most of the day yesterday between checking emails and replying  and then cleaning and decorating my house for the big party Friday night.  Zack spent his highly anticipated day off TAPS by sleeping til almost 1 pm.  I tried several times to wake him with no success.  Then he played on his computer and smoked and napped the time away.  I warned Zack we will be having a house full of girls for a pizza party in a couple days.  It didn't mean much to him.  It means a lot to me.  I am so worried he'll come strolling down into the kitchen to help himself to pizza and snacks, the coaches will be sitting there...try to make conversation with Zack and the schizophrenia will show itself.   I know if they see Zack they'll ask about his life....is he going to college?  working?  And then I'll be backed into the corner of having to share the nasty truth....he had a great life ahead of him until he was suddenly smacked down by this disgusting unexpected disease.....what a damper on a fun night that will be.  I'll have to rehearse what I'm going to say....and practice a casual, it's no big deal expression, to accompany my words. 

I forgot to mention last Tuesday at Jojo's dance class, my dance mom friend Laurie and I chatted and laughed the hour away, but then the subject of Zack came up.  I told her the truth of his situation.  Just spilled the news right out as we were leaving the studio.  After an hour of casual nonsense talk, I don't think I had the appropriate tone of voice or look on my face.  The external me did not coordinate with the words that came out of my mouth.  She took it well...but she was shocked and concerned.  I felt like I tried too hard to make light of it all...and I remember her looking at me quizzically....wonderingly....like how could I say what I said with a smile on my face....Honestly I don't even know.   I weirded myself out....I was so fake and guarded.  She told me she would pray for Zack and us.  That was last week.  Jojo skipped dance yesterday, opting instead to go to the last soccer practice of the season. 

I'm starting to feel gloomy again.  I suppose that's part of a depression...probably normal that it comes and goes a bit...but for the most part I believe it's going.  At this moment it's hard to tell.  I haven't been able to take my daily escape walks because of the weather and my schedule.  Zack's stuff and this soccer party hovering over me is weighing me down.  I know I let little things bother me too much.  A party should not be stressful.  But maybe that's part of a depression, too.  Happy fun things are twisted into stress.

Zack is going to TAPS today.... maybe tomorrow, too, if we can see Dr. M.  But then that's it.  Over and done...schizophrenic kid back in his lonely room 24/7....only his messed up mind for company.....I really do need to place that dreaded call.

To Be Continued......

Zack...you can hide, but we know you're there.... somewhere......

Monday October 24

It's a miserable Monday....not a magical  Monday at all.  Penny played her silly grab my ankle, bite my pajama pants game as I stepped out of bed.  She is always ready for mischief....it is now so dark in the morning, she's nearly invisible blending into the shadows.  The girls got off to school in the gloom....and Penny went back to sleep.....snoring nearby as I worked on the computer.  I made dining reservations for clients, emailed them back...wishing them to "Have a magical Monday!" while thinking to myself how this day sucks. 

Last Friday after my horribly discouraging meeting with Sandy at Pioneer Center, I called Alden Terrace to inquire about placing Zack there....the guy I wound up speaking with was kind of an ass.  In the first 30 seconds he made me feel even more desperation by stating something about how not just anybody gets in to Alden Terrace.  They need doctor records and referrals blah blah blah.... and telling me this criteria with the attitude of basically they'd be doing me a big fat favor if they took care of my schizophrenic kid for me...for a mysterious fee of course.  Thanks, buddy.  He wasn't even very open with any facts about their program or the place itself - not even offering for me to come meet with anybody or see where I'd be putting my son.    The guy and our conversation did not give me the warm fuzzies. 

I let the garbage go and enjoyed a hectic and fun weekend with Lucy and Jojo...soccer Saturday and then shopping and out to dinner for the three of us.  Yesterday we cleaned the house and got caught up around here.  Zack slept all weekend.  All the days....all through the nights in his quiet dark room...He didn't do much else.   I have the "sudden death" possibility of these meds in the back of my mind and once in a while I'd peek into his room and say his name to see if he reacts.... His obvious boredom, sedation, and isolation, and the fact that he left a burner on last night after he made himself something to eat, motivated me to call Alden Terrace again and set up an appointment asap....warm fuzzies or not.  And I think of Lucy and Jojo...and how badly I want a normal family home life again....

Zack's TAPS group at "Family Services" is coming to a fast end.  He has one more day this week and one next week....then he'll be home 24/7.   He needs something other than his lonely room and a monthly psychiatrist visit to aid his recovery.  I had hopes maybe Alden Terrace, despite the unfriendly welcome, would be the solution for all of us. Care for Zack and freedom for us.

I had to force myself to call again.  I wasn't looking forward to talking to an ass, so I bribed myself with a sausage egg mcmuffin - minus the muffin - and a large Diet Coke.  On the way home from dropping Zack off at TAPS I promised myself if I passed our subdivision and drove on to McDs I would go home, eat my breakfast, and then place that call to Alden Terrace.  So that's what I did.

This time I got a guy named O.B. on the phone.  He was nicer than the last guy on Friday and not an ass.  I felt a little warmth....he said 1130 would be fine to meet and have a tour, so I showed up at 1125.  The place is set in a cozy neighborhood..looks like a small well kept apartment building with a pretty yard and lots of trees.  It's not too far from home, either.  Maybe about 15 minutes.  I checked in, filled out a quick form, and Maggie met me to show me around.  She was young - probably early 20s - and she didn't seem overly experienced to me.  I wasn't impressed with how she answered my questions about the care my son would receive there.  This adventure is all new to me...I'd prefer to go through it with seasoned adventurers....not a kid.

As Maggie and I entered the unit I was disappointed and saddened by how hospital ish it was...cold, vinyl, blah and quiet.   Part of Alden Terrace is rehabilitation and nursing home care.... but I guess dummy me thought the behavioral health part would be more cheery and homey.   To my eye it was just like the "specialty hospital" ..except there were TVs in each room.  Same fake wood, low hospital beds with thin blankets, one pillow per bed, boring nightstand between....some rooms were dim....others had a few people sitting and quietly chatting......fake wood and cold plasticky chairs...nothing cushy cozy or warm.

What stood out for me.....middle aged men patients (women and men are separated into different wings) - no kids Zack's age to be seen.  I got the feeling these men had been here too long.    There is a shared "shower room"..... Zack will not like that....last night he took an almost two hour shower.  I forgot he was in there....at 11pm I realized I heard water running and told him it was time to get out.  And he said "Oh sorry!" and he did get out...no hassles.   Sharing a shower with everybody will not go over well.  There is a shared living room area... with those pepto pink plasticky faux comfy armchairs all around a TV.... a dining area...seven round white tables and chairs in a bright sunny room....they were wheeling a yucky smelling lunch in when I was walking through.   Zack - my mega eater and cook - wouldn't be pleased.....There is a smoking patio....and then a smoking room, for when the temps drop.  There is a highlighted schedule hanging on the hallway wall listing who can smoke when.    There was a schedule for groups.... I don't think Zack would even go to any groups.  I picture him sleeping the days away in his dim boring room..passing the time lost inside his mind, his private escape from a crappy reality....That's what he did every other hospital stay.  

I asked Maggie how is this place different from a hospital? She told me they give more freedoms than a hospital... Like what?  Patients can, after time, earn the privilege to come and go......and they can earn tokens for cigarettes etc by going to their groups.... other vaguely described incentives and freedoms etc.  She said this is considered as being between a hospital and a group home, which is what I was told by Alaina and by Sandy at Pioneer Center. Yet the place still shocked me...kind of like some depressing hospitalish prison for the mentally ill is what it resembled.  But she said they like to see people improve and move on with their lives to group homes....but then there were those older guys....

As I walked through,  I felt the guilt in me expanding and rising up....Alden Terrace brought to mind the type of place where you drop somebody off and never bother to return for.  Somebody that's a burden you cannot deal with anymore... You don't return because if you did you'd feel awful seeing your loved one there... and knowing you are the reason....your failure...defeat... your desire for a normal home life.  I tried to smothermy growing guilt...sought to convince myself Zack needs this level of care and confinement....this place would  benefit him....but I felt ill when I left.  I sat in my car and quickly handy wiped my hands....still trying to tell myself it's not so bad.  But the more I thought about it afterward, I know the truth.  Zack would not recover there...He would languish alone in a strange room and deteriorate.  He'd be separated from us and his comfortable room at home by my selfish decision.  Even for the girls,  I can't do it.

It's been several hours since I left Alden Terrace.  I've made up my mind.  I picked Zack up from TAPS and he got in the car, greeted me politely even though I was ten minutes late...and sat silent for the ride home.  Yes...he's ill....but I love the crazy kid...whoever he is.  He is still a stranger to us, but he's Zack somewhere in there.  I would rather have him here...giving me grief and sorrow than have him moping in some dreary mental hospital type place indefinitely...feeling deserted, unloved, and alone.  At least if he's alone here it's by his choice.

Abby from "Family Services" had called while I was out touring Alden.  She left a message that she wanted to know how my appointments last week went.   It felt good to tattle on Pioneer Center and the way they just dismissed Zack as unhelpable.   She was sorry and surprised.   She told me I should call Thresholds and speak to Gary over there.  Thresholds may have a more supervised group home that would work out for Zack...it may be more of what I want for him and his recovery.  I'll do it tomorrow.... I'm worried about more rejection, but it's another path to take.   Abby was very helpful and kind as always. After a rocky start months ago, I  appreciate the help and direction she's given me.  She left a note for the doctor, too, about Zack being overly sedated on the 20 mg of Zyprexa.   We may see Dr M this Thursday instead of waiting til next.   I got off the phone with Abby feeling numbly resigned to defeat and accepting the status quo...we will have a skeleton in the closet for a while longer.....and I was resigned to digging up more hope and patience.... waiting for the medications to show some positive effect so Zack might magically become "group appropriate".... and helpable.

Then half an hour later Abby called me back.  She had shared with her supervisor how Pioneer turned us away.  Abby gave me a name and number of some big wig on the county mental health board and advised me to contact her and let her know the struggles we've gone through to get this kid some help.   I'll call tomorrow....this may be a new lead on my quest. 

To Be Continued.....

 The Contemporary has always been Zack's favorite Disney resort.  

Sometimes I wonder if he'll ever see it again.

Friday October 21

I'm too old to be climbing through windows.....

Yah...driving home from our Pioneer Center meeting today I kept trying to convince myself when one door closes another one opens...or something I heard about maybe a window opening instead....but I'm feeling old and stiff and tired.  I'm about done....done searching through unfamiliar doorways, cracks in the woodwork, dark alleys, half open windows....under creaky floorboards....I'm toast. 

Zack and I met with the person in charge of intake at Pioneer Center this morning only to be turned away from services.  Again.   Even though the level of services Pioneer offers was held in front of us like a golden carrot by several people at "Family Services"....just yesterday at Zack's doctor appointment Dr. M suggested the "workshop" at Pioneer to Zack as a terrific day option.  I let her know we were going to be meeting with them today regarding their day options...and her response was, "Super!!!"....Well guess what?  It's not so "Super!!!"...it's not even "super".

It's not super at all to be passed off from one agency to another because nobody knows what they're doing...nobody knows how to help a mentally ill person that has no insight or awareness of his disease...and not only that, the mentally ill person has to want help...they have to realize they are ill and need to get help...how crazy is that?   We have to continue on this fruitless quest for the magic potion because really - the truth is. NO body will offer help (or be arm twisted into helping) until some medication works its magic, because Zack's disease is that far gone... He is hopeless to be helped by groups or individual therapy at this point due to the condition he's in.   And I find some disgusting irony in the fact that everywhere we have gone in our search to reach help for Zack...in the same breath they deny him services, they offer services to me and my family.   Because we obviously need their help..since we're STUCK in a sad situation with no way out, our lives burdened by caring for a severely mentally ill kid.  I suppose we're an easy fix....so they'll accept and "help" us.  I was told by Sandy that if Zack becomes too big a burden on us at home "there is always PADS"....it's a shelter for homeless people.  So, because our son Zack is an adult we do not have to care for him, we can dump him.  Legally.  My confidence in the system is zilch today.   How to say "disappointment" in two words... "Pioneer Center".  Or, "Family Services"...or even "Mental illness".  Any of those.

Dr. M did not opt to try the Clozapine.  She did not even mention the wicked stuff... I did.  I asked her why aren't we switching to it now?   Instead, she upped Zack's dose of Zyprexa from 10 mg to 20 mg.  And again we wait another two weeks to see if this is the magic pill and perfect dose.  Doubtful.  10 mg is the usual therapeutic dose.  It did nothing.  Two weeks ago she told me that if we didn't see any improvement in two weeks there probably would not be any.....so???  There won't be any.....but we wait anyway because she has the prescription pad.  She's in charge.  My patience is nearing it's limit and my aggravation with the doctor and agencies is growing.

The woman from Pioneer was stunned that Family Services referred us to them.... she said they are their "competition"... but I guess once she "gauged"  Zack she realized why we showed up at her office....and she gave me other names & competition to call!   Now I'm supposed to contact Thresholds or Alden Terrace and see what they have to offer.  Unbelievable..if it weren't so pathetic, it would be humorous.  It really sucks to feel such disappointment - because I admit I was becoming hopeful that this would be it...we'd finally reach help and be on the path to recovery.  I was coming to the realization that maybe TAPS wasn't the place for Zack... we tried, it didn't work out, on to something new.  The whole "When one door closes another one opens" thing.  Well the one open door was slammed in my face this morning.....I have to go find a window to crawl through....or a rock to climb under.

I felt the door was slammed in my face but she did actually tell me "The door is not closed"....She said "The door is open but Zack needs to be more "stabilized" on his medication".  He is "not group appropriate right now".   Well.....I sort of understand that....but he's not "family appropriate" either.   We're not professionals...THEY are.....but he's not their responsibility....he's mine.

I asked her how am I supposed to get him up to "group appropriate" speed?   I painted her a picture of how Zack spends his time here at home... stays in his room all day (well, he will be soon because TAPS is kicking him out), plays violent computer games, smokes, eats, showers, and makes messes for me to clean....and then there are his psychotic symptoms.... How is the seclusion and time-wasting helpful to him getting up to "group appropriate" speed?   And the only answer is basically we sit and wait for some cocktail of that expensive pixie dust chemical crap to magically take effect and bibbidy bobbidy boo he will become "group appropriate" and all will be well.  She told me if I (miraculously) see a change in him to schedule another interview so Zack can be reassessed.  That's why I feel I got a door slammed in my face today.  We have tried so many medications this past year with no luck...my faith in their power is dwindling...but it appears there is nothing to be done but wait and pray and hope...and suffer through it...struggling to keep believing some magic med will work it's wonders....while I scrape myself up again and continue the search for another door, window, path....

I'm embarrassed because today I cried.  When it became clear that she was giving us the brush off,  I wanted to put my head down on my folded arms on the round table in her office and just bawl...and say "I QUIT... I can't do this anymore"...I can't keep hearing there is nothing...no help..no services...I'm stuck.  I was fed a sweet spoonful of bogus hope by "Family Services" in order to get rid of us...to ease their consciences on giving up on Zack.... They told me Zack might even be in a group home by the time we leave for our Thanksgiving trip...lies...truth is they have a wait list with five names on it, she told me Zack is not only not group appropriate, he is not group home material, and she won't even put his name on the waiting list until he is...(after the medication starts to work....whenever that may be)...."Family Services" told me Pioneer had day groups for Zack, they'd help him find jobs, etc etc..etc.... I was given the impression that Pioneer Center would be the answer to my prayers for Zack - for now.   Wrong.

The unexpected bitter disappointment I was fed today mixed with the sweet bogus hope I had already swallowed made me sick...  I almost controlled my emotions until she sincerely and sympathetically told me, using my first name like a  friend would, that she understands.. sees how badly I want this for my son, and she hears my desperation.  It was that word, "desperation"...that one sad word sent me over the edge.  The tears poured out...and once they started they did not stop easily.   That sad word sums this whole life adventure up.  I am feeling desperate...and there is no help for it, other than getting myself some therapy from some professional incapable of helping my son... therapy intended to teach me to learn to accept defeat.

At least before I lost my composure Zack had gone out to sit in the waiting area.  He wasn't around to witness me fall to pieces over another failed attempt to secure him help....help he still doesn't believe he needs.  "Everything is fine".....

To Be Continued.....

 

Close your eyes, Zack...you don't want to see what's going on.....

Thursday October 20

Wednesday flew by.  I don't even remember much ...it was a blur.  I do know Zack gave me a really hard time about going to TAPS yesterday.   He insisted that he didn't have the group... he "knew for a fact" because the week prior he didn't go on a Wednesday.  Once I convinced him he did need to go, he was such a slow poke about getting ready it was aggravating.  I had to keep hounding him to get out of bed...then out of the shower..he kept saying "OK"...then not moving...then he just wouldn't speed it up.  He arrived to his group a half hour late. 

My husband's trip got canceled on Monday....but then rescheduled yesterday afternoon.  He flies out at noon today.  So I'm panicking about packing him up between running Penny to the groomer, getting Zack up and moving for his group - he is going today but not tomorrow - and then I need to go to Zack's doctor appointment today with him.  I don't even know what time that is scheduled for.  Somebody was going to contact me about it...but no call.

Lucy had a "band blast" concert last night.  I wasn't thrilled about going...the day was a busy blur and I was tired...it was dark, cold and rainy out...but once I was at the school, and saw her practicing with the percussion ensemble before the concert started, I was excited to be there.  Lucy is such a remarkable kid.

Earlier in the day I received an email from her - a rough draft of an email she will be sending out to parents of visually impaired kids in the school district regarding a charity she is going to start.   The state of Illinois is broke and one of the areas that will be suffering is funding of services for special needs kids.  Lucy knows she is blessed...we live in a nice area of Illinois and along with that we have a wealthy school district.  She has never gone without any services or technology she's needed....but that day may come....and there are towns and school districts not far from us where kids do not have access to necessary services and gadgets they need to succeed in school - and later in life.  Lucy is a go getter and wants to help wherever she can.  As I sat on the bleechers watching her so confidently on her marimba...using her graceful flowing arm movements she's been taught, and then arms moving so fast the mallets were a blur..and during some music playing the tambourine and dancing to the beat, I was so proud...and so moved by her strength and grace.  What a blessing she has been to me for 15 years.  I was so happy I dragged myself out into the dark and over to the school to see her shine.  And she did shine...she was amazing.

After the concert as we readied to leave, a grandma visiting from Minnesota sought Lucy out of the crowd to tell her she was "Wonderful" and that she "Couldn't take her eyes off of her the whole time".  She said her grandson is in the drum line (a big deal..our school has a fantastic drum line -one of the best in the state - some say number one- and it's a highly coveted position and we have a large 150 member band).  The grandma said her son was in a show band in college, and she told Lucy she looked like she belonged in a show band.  Lucy smiled and humbly accepted the compliments....I wanted to add  ..."And she is this great and blind".....I am so proud of that girl for what she's overcome and where she's headed.

Zack and Jojo stayed home...I was sorry Jo didn't come along..she missed a fantastic concert...but Jojo worked on her Halloween costume.  She is going to be an art teacher and she was busy decorating a pair of jeans with oil pastels and painting up a pallet. 

Something odd is going on with Zack.  I know...so what's new?..but it's very weird.  He's sort of over-happy...but happy all by himself.  I've heard him secretly giggling and snickering a lot.  My husband thought he was stoned last night...but there is no way he had access to street drugs.  He's been chained to the house.  Although...he has helped himself to things in our medicine cabinet.  Yesterday afternoon   I found an empty bottle of 150 10 mg antihistamine pills in the dryer when I took his laundry out.  To be fair, they could have - and probably did dissolve in the wash....but why was he even messing with them?  I bought them so long ago - don't even remember why...they're not something I'd normally use..I am sure there most of the pills were left.   I asked Zack about them and he conveniently "didn't remember" taking them...he insisted he took stomach meds... maybe he got confused.  I don't know.  He is such a conniver and liar. I don't know what these pills would do to him, either.  They were "non drowsy" but mixing meds with his strong prescriptions isn't a good idea.   Now apparently I need to hide the over the counter meds in this house so he doesn't poison himself accidentally or on purpose.

I'm concerned about that soccer team party next Friday.  Worried- but yet I have time to block it out of my mind.  I'll start panicking mid week, next week, while throwing it together...because it's going to happen...I just have to figure out what to do with our skeleton in the closet.  At least it's the season for skeletons.

To Be Continued.....

Halloween at our house 2010

Tuesday October 18

Boldly go to social security and department of health and family services........

I'm getting ready to take Jojo to dance but wanted to get an entry in today.  Today was a big deal - we braved the dreaded social security face to face interview.   And I did dread it..I felt like taking an ativan this morning.  My anxiety was peaking out. 

The worst part of the whole ordeal turned out to be getting Zack up and moving and functioning.... but that  was really a struggle...the rest of the experience wasn't as bad as expected but it wasn't pleasant.

We arrived about 8:50 for our 9 am interview.  I didn't realize the office didn't open until 9 am.   There was a line of people outside the locked door waiting....Zack got out of the car to enjoy a quick smoke.  As he was getting out, an older gentleman walked by him and Zack said, like he knew the guy... "Hey, how are you?" to the man...who then looked at him oddly and gruffly answered unintelligibly.  Awkward.  I sat in the car.  At 9 am a security guard unlocked the office door and the assemblage poured into the office.

There was a computer touch screen as a self check in process....the people ahead of us entered the last four digits of their social security number and a ticket was printed out for them.  Zack and I got up there to the computer and it froze up. Ha... great way to start....We stood there looking for any employee....nobody. Even the security guard had disappeared.....We stood for probably five minutes looking dumb, until the guard came back around and we got his attention and told him what happened.  He tried messing with it... failed...and then went to the back offices where someone restarted the computer....another ten minutes.  Super slow computer...we waited while a line grew behind us.. So, we were "late" for our appointment. 

Even late, Zack and I sat for about five minutes before his name was called....We were directed to window six.  It was a private cubicle and there were two chairs... a man and a computer on the other side of the counter -  facing us, and "Boldly go to.....socialsecurity.gov"  Star Trek promo posters and fliers everywhere.... weirdly inappropriate and kind of funny.  I guess they're trying to lighten the whole mood of the place?   And here we were...boldly going where we never imagined we'd be.  Bizarre.  The man introduced himself and explained the process.  By now Zack was barely awake. Apparently his 100 mg Wellbutrin "lift" for the morning isn't doing the job.

The first question was something about, "Does your condition cause you pain or other symptoms?"..Zack said "No" and the guy marked that as his answer... WHAT?!?! ...I thought that's wrong...of course schizophrenia causes symptoms...disruptive awful symptoms...so much so that Zack has no life....The kid was sleeping right now in the middle of talking to this man.  I made the guy change the answer to "Yes".  For the most part,  I started off letting Zack answer anything he could and backed him up for the first part of the hour...for the last part of the questioning, I looked over at Zack and he was sitting up with his eyes closed..either sleeping or somewhere else.  I finished up with the questions.

The very last part of the application asked about hospitalizations.  That got a little sticky.  Zack has had five in two years.  Those seemed to throw the interviewer off.  He kept thinking we were done after each entry...and we weren't.  And each hospitalization started with an emergency room visit (except the last one where the ambulance took him directly from "Family Services" to the specialty hospital)...so the emergency room visit was extra on top of the hospitalizations...and most often at different hospitals because they would transfer him to wherever they had room.  I've learned from his hospitalizations that psychiatric floors are full.   Not sure if the guy was running out of space to type lol or if he was really kind of shocked about the number of inpatient stays and durations of each....or what, but answering all of these questions with names and dates...and reasons for each...that's when I almost lost my composure.

I looked over at Zack in his own world, sitting next to me but not with me, and then the silly Star Trek poster and got control of myself... I concentrated on trying to read the actors' signatures.  Patty Duke? I didn't know she was in Star Trek....strange.  I know she battled mental illness though.  I had to work at stopping the tears.  I guess it was all the thoughts and sorry sad memories of two tough years gone by....all the stress, the pain, the strain on our family...on my marriage....two years of trying so hard to get this kid help and make him well...and now sitting here, in this office -once again asking for help... but still feeling defeated.   My mentally ill kid next to me almost snoozing through the interview, so doped up on his meds and lost in his own mind...I had a poor pathetic me moment.   It passed quickly though, as I thought about the incongruous Star Trek- social security connection and we wrapped up the interview. Now we wait three to five months for a determination. 


I had the medicare/aid paperwork filled out and ready to drop off across the street at the Department of Health and Human Services office.  We entered that building and saw the other side of life.  That's when all my "poor me" thoughts flew right out of my head.  I've obviously been blessed.  I have really led a sheltered life.  This adventure I've been going through with Zack has shown me things I don't think I would have ever been exposed to.  There were young people, old people...babies... a childrens' play area... a table with loaves of bread on it...various signs offering different types of assistance available.   Zack and I got in the long line.   I looked over his application, again checking through it while we stood - me in my expensive Keen shoes and new Eddie Bauer jacket...feeling like I didn't belong there and almost like I'm abusing the system...but I'm forced by circumstances, just like these other people, to become a part of this system.  I belonged there.

There was an option to mail the application in...Zack was uncomfortable being there - after the social security interview he was ready to just stay in the car....I opted to leave.  I mailed the information out already this afternoon.  I believe within 60 days we should know if he is eligible for health coverage.... and I have worries about that anyway.  Why would the government give our kid health coverage when he's on my husband's policy?  But he NEEDS their coverage to access more services for his illness.  Nowhere on the questionnaire did it ask the purpose...or goal of applying.  They did however want to know if you already have coverage, through who, the policy number, monthly premium...etc.  I have a bad feeling about this.  No group home for Zack without SSI and medicare/aid..whatever it is.  And no Pioneer Center day groups for him, either, without government assistance.  I don't understand it and I think it's so strange how that works.

Today was a day off of TAPS.  Zack slept all day.  That was how he spent his day away from that group he hates going to.   He didn't do anything fun at all.  He slept.

To Be Continued.....

Just keep swimming.....

Monday October 17

I'm sad the hectic weekend is over.  The house is quiet and I am feeling a little uneasy this morning alone with my thoughts.   I get used to having the girls around and their schedule of activities to keep me busy, out, and preoccupied.  For me, the weekends are a pleasant form of avoidance.

Last night Zack asked me if he has his "class" today.  He wasn't happy to learn yes, he does.  He is aware "Family Services" is weaning him off going to their TAPS group.  He doesn't know why...or what's to come. I'm unsure about how much information I should share with him.  Sometimes he surprises me with what he retains and remembers, other times it's like the conversation never occurred.  Wasted words, wasted time.  I don't want tell too much and  worry him, either. He doesn't understand we are working to get him well and these groups are a part of his recovery.

Saturday began with Jojo's soccer game and then continued with Lucy's afternoon marching band competition.  I truly enjoy both so it was a day to look forward to...and I looked forward to feeling good having some fun.  I have really been stretching to feel happy...counting my many blessings and trying to stay in the moment, notice details.... appreciate the present.  I keep telling myself,  "Life is too short to be miserable"...and I sincerely believe that.  My anxiety is much less and my appetite is coming back a little.  Those issues got so bad I was having horrid cramps in the night and losing my hair.  That scared me.  It's not happening lately....but probably because I am making a conscious effort to drink more water and eat something every couple hours...anything I can choke down.  I make a point to bring a water bottle with me any time I leave the house and I force myself to drink it while I'm running around in the car.

Over all I am doing better with my mood.  I caught myself smiling last night while watching Amazing Race.  When the twins were told they were not eliminated I cried...but the tears were happy tears...and I realized I was actually smiling, too.  Right then I held still and contemplated that moment... to determine...am I happy now?  But even while enjoying watching Jo play soccer, being filled with pride while Lucy performed, feeling relief for kids on TV I don't even know.. ..there is a vague numb weight about me.  It's so inexplicable...it's nothingness...yet it's so strong.  I want the nothingness to just disintegrate into the air...but I can't breathe it away.   It's a hazy weight that is difficult to describe...it's just some niggling nastiness hanging on inside of me and surrounding me...stifling me.  Sometimes, when I unexpectedly become cognizant that my worries are not at the fore of my thoughts, I become introspective - to test myself and see... is that numbing nothing weight still there?...I discover it is still there...it may have been subdued for a time, but it's still with me.  Will it be gone when Zack is?  Or will the vague hazy weight twist into something more solid and real...a feeling I can put a label on... a gagging guilt?  What about next month when I escape to Walt Disney World?  Can I look forward to melting into the magic and leaving this foggy burden behind?  I'm not sure...but I anticipate the day I feel light and free and unencumbered again. 

Friday when I picked Zack up from TAPS, while driving home, I told him about our planned Thanksgiving Disney trip.  I held my breath hoping he would not say, "Great! When do we leave?" ...and he did not surprise me.  He said he did not want to come along with us.  To say I felt relief is an understatement... but now a new can of worms is opened.  How to handle leaving a psychotic person alone for five days.....? 

Also, Friday... I received a group email to all soccer parents.  The coach was asking about maybe having an end of season team party.  The team is made up of such a fantastic group of girls and this is Jojo's 6th year on this team with these coaches.  We have a perfect house for parties...a large open great room and an acre yard and acre of woods...it's a fun fall party place.  The girls can have a bonfire and play flashlight tag in the evening... I imagined a lot of fun for the kids and me possibly getting to know more of the parents.   I quickly replied I'd be happy to host a party for the team.  Then it hit me.....What did I do?  I forgot about our crazy skeleton in the closet....the reason I haven't had barbecues or pool parties all summer...the reason we don't invite family friends over for holidays anymore....the cause of our antisocial behavior.... our unpredictable mentally ill adult kid...who roams the house talking to himself, sits out in his car chatting to the passengers... smoking....blasting his obnoxious ambient music in his room and outside... the kid that makes messes wherever he treads and appears psychotic.....what did I do?   Briefly I was excited and proud of myself for stepping up.   This is how I used to be..willing to participate in fun.  Committing to hosting the party is part of my plan to snap out of my gloom, but now I feel bewildered....and unsure.  I used to love throwing parties for the kids...decorating the house, baking, planning....  but now I have to plan what to do with Zack for a few hours on a Friday night...to hide him.

This is a big week for us.  Tomorrow morning is the SSI disability interview...bright and early at 9 am.  THAT will be a struggle.  I tried already for 20 minutes to get Zack out of bed and moving this morning.....he is not quick to rise and shine.  He has to be at his TAPS group in 10 minutes, but he's giving me grief about moving.  After his interview tomorrow,  I have to figure out where the Department of Health and Human Services is located locally and drop off the Medicare/aid applications....which I now have concerns about.  Then Thursday the Dr M appointment & possibly discussing medication changes.  Friday we have our interview at Pioneer Center.  During all of this my husband will be flying out of town.  Probably a good thing.  We still do not see eye to eye on Zack's illness and that is the cause of stress. 

To Be Continued....

Just a random photo that makes me smile.....

Friday October 14

The Zyprexa is not working.   Zack's voices are back and his replies are louder, more frequent, and less discreet than ever before.

Yesterday in the car on the way to TAPS, he sat next to me with an odd facial expression...almost like he was trying to control himself and hold something like a huge loud laugh in.   His eyes were wide and he had a smirky smile while appearing ready to burst due to something he was listening too.   A few times he made indiscernible sounds but I could tell they were "answers" of some sort to the mysterious questions in his head. 

Seeing this and hearing him doesn't spook me out like it used to.  The first time I watched him obviously talking to nobody tingles went up and down my spine.  Witnessing someone in a psychotic state can be very disturbing.  Now, after all this time of living with it, my curiosity is just peeked.  Why can't I ever really hear and understand what he's saying?  Often the individual words are clear enough that I can tell they are English words....but I cannot comprehend them.....or the way he puts them together to hold his side of the conversation.  His answers to the voice in his head make no sense. 

I had heard enough of these mysterious conversations over the past few days that I confronted him.  He NEEDS to realize he is hearing things that are not there....that realization and insight might help him in his recovery.   I straight out told him I am aware he's hearing voices and talking to "himself".  He insisted he was not hearing voices.  He defended himself by letting me know he has a "calm mind".   The doctor said he may not be cognizant of the fact that he is hearing things.....but....?  Sometimes I believe he won't confess to the voices for fear of another hospital stay.  Honesty is crucial in this search for the appropriate medication...but he won't admit he's ill.  In the kitchen, he was about 10 feet from me...facing the toaster, making a bagel...and having an involved discussion with an invisible friend...while I sat behind him interested and listening....I heard strange word combinations....odd sounds....and a chuckle now and then.  At least his imaginary friends aren't frightening to him. 

We do not see Dr M until next Thursday...at that time I do very much hope we can begin trying the clozapine....even with the warnings, possible side effects, weekly blood draws.... We need to get this kid well.  We've been on this "Drink me" path for almost a year now...and going nowhere but down the hole.   My husband asked me last night why Zack seems to be getting worse.....and I finally do agree YES he is getting worse.  I asked Dr M that same thing last week at our appointment.  She sort of shrugged and wasn't sure, other than replying with the easy explanation, "the progression of the disease".   At this rate, Zack will wind up a pacing shuffling zombie, closed up inside his own lonely dull world, in a year.  I'm feeling concerned and anxious about this progression. 

I called Abby yesterday.  I wanted to check up on Zack's participation in the TAPS group and get her point of view of his current attitude.   The news wasn't good...but it wasn't unexpected...for the most part.  The unexpected was that I found out that Zack rarely even goes to the group!  He spends five hours a day sitting in the lobby, listening to his ipod, outside smoking....basically instead of putting any of his effort into trying to get well, he just hangs out and whittles away the hours on his own...alone, except for his secret friends.  That news really surprised me.  I was aware that they cannot force him to group because he is 21 and also the Taking a Positive Step forward group is supposed to be voluntary... if you don't want help you won't get it....even if you're severely mentally ill.   Interesting.....and ironic...but that's the way the world works with mental health care.  Lots of incongruity.  Abby told me again that he's lucky he has involved parents....so pathetically heartbreaking to consider the many mentally ill kids that do not.

Abby also shared her opinion on his "health" as of late.... she said it's "weird" because at some times he seems more lucid and willing to talk to group leaders and members....while other times they have observed him locked in his mind speaking to himself.  I agree.  I've noticed the same.  I am looking forward to our doctor appointment next week to get the doctor's take on this strange situation. 

To Be Continued......

Thursday October 13

I am having a lot of anxiety about the Disney Thanksgiving trip....I haven't told Zack we are going.  I'm afraid of his reaction.....what if he wants to come?  My husband would not be happy to have him along.  I've run the "what ifs" by him...and I know how he feels about Zack possibly coming.  We have invited Zack several times in the past over the years....and this year for both our Easter trip and our July trip... and he has refused, but this time we need a break.   I am hesitant to leave him home....but taking him with would turn the whole purpose of the trip (getting away!) into a bust.  I need to mention the vacation to him today to clear my conscience and prepare him....and if he really does want to come, then buy his air....or make the decision to cancel everything.

Yesterday I finished the application for Pioneer Center.  I called to inquire about the next step, left a message for Sandy, received a return call, and now have an intake appointment scheduled for next Friday.  Next week is going to be big....SSI interview on Tuesday, hopefully doctor appointment on Thursday, and then this meeting Friday.  I'm forced to move ahead faster than I am comfortable with because TAPS is tapering Zack out of their daily group.

He was home all day yesterday and it was pathetic.  It really bothers me to see him waste his time, his day, his life.  And that's what he does and where he's at right now.... so he really needs forced structure outside the house.  Pioneer not only has group homes, but day groups that he can participate in.  "Can"...but will he....?  He certainly never gave his all to TAPS.  Sandy said she'd be able to "gauge" Zack during the meeting on Friday.  Hopefully they will be able to offer something appropriate for him.

Today, I am tackling the mega medicare/medicaid...not sure which...application so that on Tuesday after the SSI interview I can take it across to apply for that.  Pioneer Center does not take private insurance so I have to have all the ducks in a row for Zack to be accepted into any of their programs.   Both this app and the Pioneer Center app ask for proof of household income.  I am going to be pissed if because of my husband's income Zack is ineligible..... we have two other minor kids we need to look out for, Zack is 21... are we supposed to spend the rest of our lives supporting him?  The problem with that is we cannot support him in a group home...that would cost thousands of dollars monthly and probably break us. I am very concerned....

While Zack was home hanging out during the day yesterday, he actually asked me if he could shop for clothes.  I was glad about that!  He needs to clean up his look.  But I also knew that there was a sneaky secret behind that request.... what he really wanted was gas in his car and cash in his pocket...freedom to make dumb damaging choices.   After a lot of back and forth discussion we decided how he would shop alone....because to be seen with his mom in public is just still so distasteful to him.   Of course he wanted me to give him cash and he drive off on his own.  He spent quite a while working me over...he has always been a manipulator... but I stood strong.  No driving...no money.   I told him I cannot have him tempted to blow it now.   So I drove him to the store, he shopped, put clothes on hold, and I went and paid for them.  Now we'll see if he wears them....I've noticed he wears the same things repeatedly.  With his slippers.  I was able to convince him to wear his shoes to shop in.  I felt like that was making progress.

I am worried about mentioning the Thanksgiving trip....and having any discussion of the Pioneer Center options.  His reactions aren't predictable.   He has not mentioned the group home since the day he called to ask about it.  I'm not sure what to think about that.

Zack is under the impression that TAPS is tapering him off because that's it...he's good and done.  He doesn't realize they are ending it with him because they can't help him.  It's been two months and they've tried.  I don't think he is aware that there is more intensive group time ahead for him.   He's not even aware that he's sick.  He truly believes he's fine...and that's a big part of the problem we're facing trying to get him well.  He has no insight....no understanding of what's happening to him.  Zack was the one that mentioned to me, in the morning yesterday, that he didn't have to go to TAPS...and he was proud of that...like we all finally realized he's fine and doesn't require further help.  I was surprised he knew no TAPS... and remembered.  But he did....because that was important enough to him.  When he finds out about what's coming next week it won't be pleasant.

To Be Continued.....

 Part of me is really looking forward to a little Disney magic

Tuesday October 11

I need to catch up here!  We had so much going on this weekend.  Fun things.  The girls were off yesterday for Columbus Day and they kept us hoppin'.   Zack...not so much.  He still stays in his room.. no change there.  He's almost not here.  One week on the Zyprexa and we're not seeing any miracles...but we'll give it another seven days...and keep half hoping.

We were out all day on Sunday for a huge high school band competition Lucy's marching band participated in.  The day started off with a parade, then a carnival, and a field competition.   My husband, Jojo, and I went to the festival to cheer Lucy on and enjoy the day.  We still always ask Zack to join us, but he prefers to be at home in the comfort of his room.   We ask, though...one day he'll come with us.

After the parade, we grabbed a bite to eat...and Jojo decided she'd like to go home...she was cranky from the moment she woke up and she couldn't shake it.  I have a secret worry about leaving her home alone with Zack.  I don't know why - other than because he's psychotic and unpredictable.  Jojo isn't afraid of him, though...everybody always says what a nice polite kid he is..even now....but I am still hesitant to have her stay home alone with him.   She insisted...and it was going to be a long late night, so my husband and I took her home.  It was better for Penny to have somebody there to care for her, anyway.  Zack ignores her barks.   He wound up being home alone all day, though, in his room, quiet and lonely... and that concerns me, too.  He probably didn't even realize Jojo was there with him.   His long day home alone got me thinking ...and hesitating again about our planned Thanksgiving getaway.  We'd be gone five nights....

I brought that up to Alaina....that we are going away for Thanksgiving...I was all prepared with my defense of the decision, too.  I never had to use it.  She understood our need to escape for a bit.  She was concerned, at the same time.  Then on the other hand she said we have a month...maybe the medication will work.... or maybe we'll have Zack in a group home by then....I don't really have faith in either of those maybes... I am  having second thoughts about the trip.  I feel stuck.  I can't back out of this trip..the girls are looking forward to a Disney do-over..and I've pulled the rug out from under them several times before by backing out because of Zack.  I can't disappoint Lucy and Jojo again.  I'm struggling... part of me really wants to call it off...I cannot make myself pay for the room...and it's due.  The worry won't allow me to commit. 

This is week one of the "taper" weeks.  Zack will only go to his TAPS group four days this week.  Tomorrow he's home....all day....sitting in his room..or smoking in his car.   Why they feel the need to do this tapering.....?  It probably wouldn't make any difference to Zack at all if they just suddenly told him he's free and doesn't have to return, but this is how they want to finish it...they stuck it out for him all this time, so I'm going to play it by their rules. 

I started filling out the Pioneer Center group home and day group application over the weekend.  I plan to complete it today and call them to request an appointment.  I'd like to get as much as possible in place so when Zack's time at "Family Services" comes to a close we have something else lined up  ---Still trying to think of this whole process as a "step"....not the end.  Not the destination...just part of the journey.  I want better for him.  Whether he knows it or not, he deserves more out of life. 

I keep working on me and my life, too.   I have had some terrific days this past week...and some down days...but I am climbing my way up this hill...without opening that Happiness book...I'm still on page three....but one important message I got out of those three pages - figure out what makes you feel happy.   I made a promise to myself to escape daily and walk Penny.  Fall is my favorite time of year and the weather here has been wonderful.  I remember reading a while back that people that find enjoyment in nature are more mentally healthy... so when I walk, I make a conscious effort to soak up the gorgeous fall colors, the gnarled twisty old trees reaching up to the blue skies,  fluffy flowing mums...and the silliness of Penny.  Maybe Penny was the dog I needed... I admit I was disappointed she wasn't another perfect lovable angel like my Tatum was....but Penny makes me laugh...and I have had desperate need of laughs over the past couple of years.  Kind of ironic how Penny was born the night of Zack's first suicide attempt... God gives you what you need...not necessarily what you want.

To Be Continued....

My big fluffy funny cuddly teddy bear girl - another blessing in my life

Saturday October 8

 Saturday.... sunshine, soccer, secrets, and a new friend......

I'm back from Jojo's early soccer game.  The day is just gorgeous...clear blue skies, fall colors on the trees, leaves crunching on the roads and sidewalks...and temps in the mid 60s already.  I am closing in on joy.  Driving home from the field with the top off the Jeep, the cool crisp breezes touching me, my music cranking, and the smell of burning in the air... I love it - and I told my husband this makes me happy. 

The game was a bit of a bust.  Jojo's team got their tails womped....but they usually win, so memories of today will keep them humble.

I walked out to the field, while texting my Disney pals, and laughing at their replies...all the while walking out to the far field, I was engrossed in appreciating what a fun, nice bunch of friends I have.  I approached the sideline and didn't see anyone familiar yet, so I chose a semi isolated spot to set up my chair and continue texting until the game.  My husband ran to get us coffee, so I sat alone.  A few minutes later another mom from Jojo's team walked up and set her chair next to me and I wound up talking to her.  Our girls have played on the same team for two years and we have never talked.  She introduced herself and the chatting just kicked off naturally.  I left that field feeling so good for having met her.

We started talking about our soccer girls...which then led to our other kids.... school, and more.  She asked me what it's like having a 21 yr old... I am a very shy person and extremely particular about who I let into my personal life (really! - most of my good friends are people I've known nearly my whole life) but I was feeling very comfortable with her (and kicking myself that I hadn't been friendly enough over two years to get to know her before now) So I answered her truthfully with "bad".  "It's bad having a 21 year old."

She laughed...but asked "How come?"   I told her everything.  I just let it out.  It was tough...but I did it, no tears...no watery eyes... just straight let it fly out of me.  I had the beauty of the day in me.... I looked toward the golden and red tree line in the distance...and there was no crying or self pity allowed... Even though she did look at me with a little pity...it was understanding and kindness I saw in her eyes.  I didn't feel judged or any negative vibes at all.  I hope if some stranger ever dumps news like that on me that will be the expression I'll have on my face and the attitude I'll have in my heart.  She asked me more questions and I was comfortable telling her the dirty details.  She shared info about her own struggles with her kids and one in particular that she is worried about now.  She also let me know she has mental illness in her own extended family and concerns, and she asked me my advice...Then to close the conversation, when the game was over, she shared something more personal, too - to kind of  "level the playing field", I think.  I do believe we all have "something"...some secret that we are ashamed to show or share.  Today I admitted mine...and she was wonderful.  It makes me tear up now because I am proud of myself for telling her and telling it with no drama...just facts...and proud of her for her reaction and the conversation it all led to.  And proud because I think I made a new friend. 

She is actually the second person I told this week -  but the first one that I told out loud, face to face. The other person is my soccer mom friend.   I told her on Monday. We were Facebook chatting online and something came up in our discussion and I let her know about Zack's illness.  She was great, too. She offered advice and options and all kinds of interesting information. She's just a completely fascinating person in general.  I felt comfortable telling her because she has "lived".  She is a nature photographer and artist...She suggested all kinds of out of the box remedies.  She has intriguing connections around the world and wants to help me find some mystical cure for Zack.  I may have to let her try.

To Be Continued....

The perfect day to share secrets

Friday October 7

This has been a fast and full week.  Lots of Disney...and plenty of psychotic.....time flew. 

Today I called the social security office.  I was baffled by their phone system...it was an endless loop of questions..push this for this.. and push that for that..... I lost my concentration on which number to press to get me where I wanted to go...I got distracted by something Penny was barking at...and suddenly I found myself ready to hang up and begin again from scratch...when somehow by luck,  the system asked me what phone number I'd like them to call me back on.  I figured my cell since they gave no time estimate...that way they'd be able to catch me anywhere.  Not fifteen minutes later, my cell rang.

The person on the other end asked me a few questions, social security number and date of birth of the person I was calling about...and the month, day and year when he became disabled... that was a toughie for me...I used the date last November when he had his first psychotic break....the day we called the paramedics to our home to evaluate him...the day Zack managed to bluff them... that same night we called the mental health crisis line..and somebody else came out to examine him...and even later that same night he wound up admitted to Singer for his 6 week stay.  She asked me the nature of his disability and diagnoses....and if I  have a preference of either a phone interview or in office.  Alaina advised me to opt for the in person in office interview - that way the interviewer can get a clear picture of how sick Zack is - another "great".  We are scheduled for the soonest available, October 18.

I also have a huge packet of Medicare or Medicaid? info to fill out.  Zack will need that too, it seems, and after the social security interview I am supposed to head across to this other office to have Zack apply for this medical coverage.  That way the timing can all be coordinated... maybe? 

I picked up his Zyprexa.  It's the new anti psychotic med... we are weaning him off the Saphris onto this other chemical wonder.  This medication came with a thick brochure full of warnings and descriptions of nasty, sometimes fatal, side effects to watch for.   Again, I am thanking God -and Obama-  that Zack is on our insurance.   The cash cost was over $600 for thirty 10 mg pills.  Our cost was about $140.  Still pretty crummy considering this is only one of four meds he's currently taking. 

Abby or Alaina must be talking to Zack about the group home...trying to win him over to accept the thought of it.  He has begun to bring it up again repeatedly...and guilt me again.  He declared at me three times today that I am kicking him out.... and that he will not live in a group home.  He will not go.. he's "fine" at home....and also today, in a separate conversation he wanted to know the time line for his move out.   He said if he has to go, he wants to leave as soon as possible.  I don't understand the waffling from absolutely adverse to the idea...to let's pull it together and do it tomorrow.....

I told him I really don't know details or how it will work or when.  I don't.   I am not sure what the waiting list is like, I have a ton of paperwork to complete to apply for the group home acceptance, and things have to be in place (the SSI and medicare applications) in order for us to be able to proceed.  It's not going to happen overnight.  He was miffed at me about the whole idea....still.  I pried it out of him..what his issue with the group home is.  He admitted to me that he doesn't want to be with mentally retarded people.  That's not what this group home is.   Again, so ironic how he is still judging and ranking people.  He's nuts...literally he's insane, looks like a scraggly slob, walks around talking to nobody, acts strange, makes odd facial expressions and has glazed over eyes, yet he is still thinking he's better than others... what a bizarre view of the world.  

I tried to explain to him...to reason... that he's not getting better living with us....and that this move is a step toward him having a life and getting healthy.  I want to believe that... but I felt like.... as my words were kind of tumbling out half-assed,  I was striving to convince myself of the positive, while trying to put one over on him.  It didn't work for him. While I walked Penny, he called Pioneer Center and inquired about the waiting list.  

I walked into the house after a quick escape walk around the neighborhood with my furry birthday girl (Penny turned two today) and Jojo came downstairs to let me know that Zack had been on the phone with somebody.  She heard him asking about the group home and the wait time to get into it.  I questioned Zack and he admitted he placed the call, but he couldn't even tell me what the answer was....I want to know the wait list situation, too.  He didn't recall the conversation so well.  He had no news to share.  I am going to try and finish that thick application over the weekend and then call Monday to schedule an appointment to meet with them.

October 7th...memories.....two years ago today Zack attempted suicide for the first time.  That same night, in Missouri, my pretty Penny was born.  And I was sitting in Walt Disney World, waiting for the Halloween party parade to begin. I remember, as I sat there alone, I looked up at the dark sky above Main Street and noticed there was a full moon...then my cell rang. It was Zack asking me if he could see a psychiatrist...kind of surreal being in the middle of the magic and receiving that peculiar call....I remember he sounded agitated....I told him I was flying home tomorrow night, and I'd get him an appointment as soon as I was home.  I thought that reassured him and calmed him down.   Then the loud music started and I had to say goodbye... I'm too tired to even bring all those strange thoughts together somehow...they are so disjointed but all occurred on  October 7, 2009......Zack, suicide, Walt Disney World...parades....full moon....and my beautiful Penny's birth.   Just a lot of jumbled weirdness...maybe showing life goes on?

To Be Continued.....

We are so lucky to have Penny in our lives..two years of laughs... and screams...