Friday September 30

Today was just another busy day...running kids around all afternoon and lots of Disney work in the morning and in between the kid running.  I was actually so busy I forgot about the SSI paperwork.  Not even on purpose.....I am going to have to suck it up and force myself to deal with it this weekend.   I know it's the truth of what I am going to have to put down on that paperwork that is holding me back.  The truth is so depressing and pathetic....and getting my thoughts on the disease's devastating effects on my son organized and written down....that's going to be a very unpleasant chore.

Zack is managing to stick to his one shower a day....He has not asked since earlier in the week to take any extras.  He did ask me for $4.00 for some cigars.... how that price fluctuates from .50 cents to .60 cents... all the way up to $4.00 is perplexing....but I'm not going to concern myself.   No cigars for Zack.  We have to restrict his smoking to half a pack of cigarettes a day.  I am always amazed when I drop him off and pick him up at "Family Services" the number of people standing out front puffing away....smoking and mental illness must go hand in hand.  Something about the nicotine and dopamine.....

Today I was still really stuck on the whole Pioneer Center day group thing idea.....and what to tell Zack.  And how he is going to accept the crummy news.  It's so odd...he is psychotic..and not here with us most of the time...but some of the time he is....enough that he will know what this Pioneer Center workshop will mean for him.... his college dream will be out for now....because at this point, that's all college is for him.  A dream.   We won't make any move toward this change from TAPS group until at least next week after I see Dr. M and Alaina.  

The scary thing, too...is I felt last night...when I told my husband the Pioneer Center news...that he was almost happy.....maybe that's too strong a word..... but I saw something spark in his eyes.  Even though he did appear saddened by the news that "Family Services" thought Zack was so bad off he needs services they cannot provide, there was relief there...and I felt that old resentment creep back into me.

Yes, I do have hope for a group home for my son....the four of us cannot keep living our lives around a mentally ill adult....but my most desperate wish is for some medical miracle...finding the magic potion that can fix this illness and bring my son back to me...the magical fairytale ending.  But I think my husband is done.  Zack and my husband have had years of clashing, fighting, physical fights... unbonding.   He wants his freedom back more than he wants his son back...I know that.  I am willing to wait - give the medication time to work it's magic....He isn't as patient.  He'd leap at the first opportunity to show Zack the door....that's why I never did tell him about the hospital direct to group home option.

The house is quiet.  Lucy is spending the night at a friend's house...Jojo is playing in her room..I can hear her singing along to her itunes.  Zack is outside in the cold dark enjoying peace, sitting in his car parked in the driveway.  Now that the days are getting chilly and the evenings worse, I wonder what he is going to do when winter is here. Will he still be out sitting in a freezing car for hours a day?  For the rest of us, tonight is the eve of a busy weekend of soccer, band competitions, and closing the pool.  I must remember to say, "Rabbit rabbit" and give my luck a boost in October... I am wishing and hoping for that extra bit of magic in a pill form.  Maybe magic will materialize in the new month.

To Be Continued.....

 The Magic Kingdom - Where the magic lives....

 

Thursday September 29

My heart is heavy.  I never even knew what that meant, but now I really do.  I feel the weight of anguish surrounding my heart and squeezing it tight...there's that sneaky snake coiled and bulky...it's back with all it's evil intent. 

Abby called me today.

It's difficult for me to even type out what she said....I put the discussion out of my mind for the past several hours so I could function through my day.  I really didn't even allow the words to enter me.  I had a shield...my guard was up.  The conversation took place on my numbed up protected surface, where I let myself  hear her...I understood her words... I responded...and I agreed....but I didn't allow myself to fully comprehend the meaning and the repercussions.   I didn't absorb her words and her recommendations until after dinner - a dinner where Zack sat and ate with us...while obviously not "with" us - when my husband and I had some time alone to talk....and I told him what she said.  That's when it hit me....when I had to assimilate Abby's words enough to be able to share them with him.  Then seeing his reaction...the reality slapped me...and the heavy heart emerged.

Abby told me the TAPS group just is not for Zack.  He's not benefiting....and he obviously does not want to be there..he's been there for quite some time.....his symptoms seem "worse" since he's been in the hospital...he cannot focus....they (at "Family Services") are brainstorming other options for him.  I confessed that I was very grateful for that.  I am.  I asked her about the scheduled substance abuse evaluation and she thought that group wouldn't even be appropriate at this time due to his continued psychotic symptoms.  He is not capable of staying in reality long enough....or he prefers his own world.  Either way, he's not with us.

Something Abby suggested was a day group - where Zack would do "piece work" and "actually earn a few dollars".  The day group is through Pioneer Center.   She told me this is something Alaina would hook me up with.... so I left a message for Alaina.  Alaina kindly returned my call and we set up another appointment next Thursday morning to talk about this option.

Here's my guilt...and my sorrow.....Zack still says he wants to go to college.. get a job.... live at home...I want all of that for my son - SUCCESS is what I want for him.....trouble is, these simple goals aren't resembling anything at all that is near a possibility for him at this point....   The waste.  That's what I am dealing with now.  Guilt and sorrow and acknowledging the serious reality of what a God awful sickening pathetic shameful waste his life is going to be...such a crappy lonely existence.  This kid that was so precious to me for seventeen years....the intelligent kid with the sharp wit and fantastic, fun sense of humor...attacked by this ugly disease....my son's life will now be reduced to futzing with "piece work" daily for "a few dollars"....and living a dreary dull life in either a group home or nursing home type setting.   That's another place Abby suggested....Alden Terrace...which is almost a nursing home...because he is that bad off.  It's all beyond sad....

I gathered my magical hidden back pocket hope...and tried my best to have optimism in my voice when I told Abby I still have faith that the Saphris may kick in....we aren't at the correct dose quiet yet...there is time.  I need to hang onto that belief, but even so, at this time I'm struggling to convince myself that something will work a miracle for my kid.   I confided that Dr M has another dirty little drug up her sleeve... a last resort... final ditch try for medication resistant patients...  She said "Oh, really!?!?" like she may have been a little excited to hear there is some other chemical to try....but then she went right into asking me if I was working on the SSI paperwork and I admitted I was having a difficult time facing up to it....Alaina does believe Zack will get it - that it will go through on the first submission because he is so ill... Abby prompted me to try and complete the forms....and then do something nice for myself.   She was aware of what I was feeling during our phone conversation...beaten....I could tell she was sorry for it.

The words have sunk into me..... now they hurt.  Hearing them hours ago, even through my armor, was painful, but I pushed them away...I didn't let their significance in.   Now I feel the grief making a comeback.  Fresh and new...

To Be Continued....

I have so many magical memories of these three little characters.....

Tonight I'm wishing on a star for a miracle...just a little more magic.....

Wednesday September 28

Another day..and again not much new.  It's difficult to even say how Zack is doing because I see so little of him.  I'm not impressed....I guess I had hoped that if the medicines were really working maybe I would see more of him...he'd come out of hiding, be more social and chatty with real people, and fun again.  None of that is happening here..we're in a holding pattern....so I am underwhelmed on this gloomy day.

I called Abby.  No return call yet.... I want to find out how Zack is doing in his group and how to get in contact with the doctor.  Zack shouldn't be responsible for his own care, med management, decisions regarding "how he's feeling" etc... they KNOW he is "severely mentally ill"...(their words) so why they chose to exclude me yesterday and put him in charge of himself is a mystery...probably just an oversight.

The call I did receive today was a strange communication from somebody at "Family Services" relaying the message that "Julie will see Zack at 5 pm on October 6 for an evaluation".... OK.....and who is Julie and what is this all about?  I love how they have unnamed somebodies make these odd calls...she sounded like a kid and she really knew nothing.  I have never heard of anyone named Julie...nor had I been made aware that Zack was up for some evaluation.  And the young person that called asked to speak directly with Zack.  She wasn't even going to tell me anything.   But she did...turns out this evaluation is for the substance abuse program through "Family Services".  The evaluation will consist of an hour and a half interview... good luck with that.  That's all I know because that's all she knew.  My list has grown...when Abby returns my call I need information regarding their plans for Zack, his participation in the TAPS group...and how to remain in the loop with the doctor.

Last night I bit the bullet.  I bought air for a family Thanksgiving trip to Disney World.  I have so much anxiety and a horrid headache today because I made that decision.  Ridiculous.  I should be thrilled we're returning to our happy place...taking a little family escape....but memories are brutal and nerves are wicked...they are squashing any joyous feelings I'd be capable of having - thinking about this trip.  Maybe once the idea of a return to the magic settles in I'll find excitement in it.  I love WDW during the holidays.....and it's a relatively short five night getaway.  We'll be so busy having fun we'll have no time to worry.  I hope.....And I have noticed...I type "I hope" an awfully lot in this blog.  It appears that I'm hoping for too much....especially for somebody in my shoes...the shoes of the often pretty negative. 

Still haven't moved from page three of my happiness book.  Not for lack of trying... I carry that thing with me everywhere.  I'm just not even happy enough to read...and not clear headed enough to concentrate.  That sounds like such a lame excuse...and I'm not wallowing in self pity by any means....but the facts of the day are that I do what I have to do...slap on a smile and conjure up my sunny voice while dealing with clients..get my housework done, cheerfully run the girls around....and then quickly return to me...the stressed out me.  Smiles and sunshine come out periodically on demand...and sometimes I think (hope again) if I play it up enough maybe the true authentic smiles and sunshine will stick one of these days.  I have heard that...if you pretend you are happy you will miraculously BE happy.... really?  That almost sounds too amazing and magical for real life.   But again....sometimes I do have the hope that it could actually be possible.   And I also believe that God helps those who help themselves. 

I have the pile of paperwork from Alaina for the SSI to work on....I need to motivate myself out of this blah mood and dig into that mess.  Help myself...and then God might have my back.   I know once I face up to that project I'll feel more positive that I'm moving ahead and taking care of life for Zack.  I also have the phone number...I'm supposed to call and ask about putting Zack's name on the group home wait list... just so hard to get myself going on this unpleasant stuff when I feel like I'm sinking.  I need to remember... he is draining me...this disease is drowning me..... I need to help myself and rise above the water for a few hours and take care of this nasty business..... get him moving toward his own life....and recovering ours.....

To Be Continued....

Thanksgiving in Walt Disney World

We have something fun to look forward to

Tuesday September 27

There haven't been a lot of changes here.  Zack's attitude seems more "up"...but that also includes him being more up to giving us grief.

On Sunday afternoon my husband asked Zack to clean the bathroom the three kids share. Zack's response to that request, "This is bull shit."...Zack didn't think it was fair that he was asked to do something....a chore to help out.  The kid does nothing productive in this house so I think having him clean the bathroom he spends so much time in seems appropriate.   I am constantly rinsing his dishes...loading his glasses into the dishwasher, cleaning up after he cooks, putting food away, picking up candy and cigar wrappers he leaves lying around, emptying soda cans he leaves half full on the kitchen counter, washing all the bath towels he uses, taking his laundry out of the dryer.... you name it... I do it....because he doesn't. 

My husband was also being a food watchdog over the weekend.  Zack's meds must make him crave food because his eating is absolutely out of control.  I spend over $350 a week on groceries and it's not enough.   Zack did not like being told to get out of the fridge....or that dinner will be ready in half an hour... don't snack now.....he wants what he wants when he wants it or he gets pissy with us. 

We had a little embarrassment, due to his new "up" attitude, when the neighbor kids were over.  It was about lunch time and Zack had his head stuck in the refrigerator, Jojo and her friends came down to make themselves something to eat - kind of caught Zack off guard when he popped out of the fridge.  He wasn't happy to see them in his space.  He got snarky with them.  I couldn't hear exactly what words were exchanged, but I recognized the nasty tone..and I felt uneasy....Zack wanted to be alone and he was making that clear.  Jojo walked out of the kitchen and I heard her say, "Come on guys, lets leave....."  I saw the discomfort on her face and I told the kids I'd preheat the oven for their frozen pizza.  

He started back at his TAPS group yesterday.  Not happily.....Today when I picked him up he wasn't very friendly with me.  I watched him walk out of the building with a strange expression on his face...he was listening to the voices.... I am so curious what they say to him.   I have been expecting a call from "Family Services" to let me know when his follow up doctor appointment will be....usually he sees Dr M on Thursdays.  I was disappointed to hear from Zack that he saw Dr. M today.  Nobody bothered to contact me...I would have been there.  I have no idea what was said about medication management, or follow ups....or his attitude...he certainly isn't going to share any issues with the doctor...like the fact that he is still psychotic.  I heard him talking to the mysterious friends in his mind quite loudly this afternoon.  I thought it was odd I was left out of the loop today.  A phone call to make tomorrow....

Zack is also being forced to keep his showering to one a day.  Our utility bills are hideous and we are all sick of him monopolizing the hot water and towels.  Yesterday he came home from his group and asked me if he could take a shower.....No.  But he said he has the "shakes".  Guilt....  Not sure that I believe anything he says anymore, really.   He plays on my sympathy....it used to work.

I have been out of the house a lot these past couple days between Jojo's activities and Lucy's.  Zack is home alone too much for my comfort.  Unsupervised.  I was at soccer yesterday and Lucy called me to let me know that Zack took a drive.  She tried to stop him...suggested that it wasn't such a good idea...but he sassed her and left.  He is an adult......

To Be Continued....

I wish we had Lady Tremaine living with us to supervise and boss my son around...

.....it would take a load off of me

Sunday September 25

Day by day.....

This morning my goofball Penny woke me up with a body slam through my closed bedroom door.  I don't know what happened...how she got blocked out of my room last night, but I chose to keep my door closed because the night before Zack woke me up several times with his trips to the bathroom....he was having night time restlessness again.   I suppose I should feel flattered that Penny loves me so much she will break through a closed door to be with me.   My naughty furry friend.


Today it doesn't seem like Zack is doing so super.  I have been really busy with Lucy's Homecoming fun and dance so I haven't really been able to spend enough time around him to know for sure, but the fact that he still prefers to sit in his car and talk to "somebody" (nobody) in the passenger seat, versus being in the house talking to us, leads me to believe the Saphris isn't working.   Medication resistant...that was a new phrase Alaina threw out at me on Thursday afternoon.  It's a frightening possibility.


It's been a fun weekend for all of us here - except Zack.  He's back to the constant showering, smoking, eating everything he can - where that kid puts it I cannot figure out, and isolating himself either in his room or car.  That's it....that's his life....and it's tough to watch.  The rest of us had a soccer game, homecoming parade, dance to help Lucy get ready for, errands to run and chores to do.  Last week, at the time....due to the overwhelming amount of guilt... I wasn't able to realize and appreciate how wonderful the short reprieve I had was.   Now I do.  Yesterday I took the coldest shower I have ever had to take - I might has well have been outside in the 50 degree temps using the hose.  I told my husband it's time....we are cutting him back to one shower a day.   The enabling cannot continue.  We cannot keep living our lives around a mentally ill person's quirks.  We were sucked into that routine....and it's over.  Enabling is an ugly word....I'm getting fed up with the ugliness in my life.



It's time for some fun.  Or...an attempt at fun.   I have been thinking....Walt Disney World over Thanksgiving.  Trying to stoke myself up for it and the possibility of going away.... and leaving Zack behind.   Our annual family Disney trip in July was a disaster.  We were so dysfunctional....everybody was on their own mental and personal page...managing their own crap and stress alone....but all of us worried about Zack back home....with good cause.   July was a waste of a family vacation.  We have never encountered anything like that before....in the past, we were always able to use Disney World as a departure from reality....leave our troubles behind and pretend for a short time that life is perfect and magical.   Not in July......

July was a huge slap in the face disappointment.....the happy place didn't fill us with any magic.   That failed effort for escape left our family torn apart, all of us dealing with Zack's disease on our own, wondering if we could carry on together or have to go our separate ways to handle life.  I guess we relied too much on that escape and over all avoidance....and when we were forced to become aware of where our reality was - the circumstances at home and separate directions we were heading.... it was a disturbing wake up....but apparently we needed that sneaky blessing in disguise.  We recognized things were a mess...and repair was necessary.  


Thanksgiving.....away.  I've been watching the flights....they've gone up in price.....I cannot commit.  As much as I want to go and try a "do over" with my husband and daughters.....enjoy a little fun getaway now that we are a bit "repaired".....the thought of experiencing that letdown in Disney World again....the magic failing us and bringing us no release from our reality.....and then the knowledge that we will all be worried sick about Zack the whole time....it's all holding me back from the possibility of making new, happy family memories.  We all need some fun.....I am desperate for some new happy memories.  But the thought of Walt Disney World actually brings me anxiety.   Part of living my life around a mentally ill person.  I feel stuck. 


We need to do something special together as a family, though.  This disease is effecting all of us....individually and our relationships with each other.  It's an insidious quiet burden we all feel and carry.  We want to do right by Zack, but we need to take care of ourselves.   It's a dilema.  Who gets sacrificed....

To Be Continued.....

My beautiful Disney buddies need some fun

Friday September 23

Zack threw up last night.... he is actually sick.  For real.   So he will be missing his first day back to his group.

Yesterday was crazy busy.  I had that "family meeting" at the hospital.   Walked into the lobby, let them know my son was being discharged and I was here for the meeting, got my green "Visitor" hand stamp and went up that direct to fourth floor elevator.   A social worker, holding a clipboard, greeted me.....then Zack strolled up...wearing the same clothes he wore Sunday...and Friday!  He said he washed everything....but the third time I see him and he's in the same clothes..that caught me off guard.  He looked a mess....needs a haircut...unshaven again....and overall just sloppy.

The social worker walked us down to a private group room.....we had a 15 minute chat...during which she tried to convince Zack to participate in his TAPS group.....avoid drug use.....obey our rules at home...we are supporting him....and that "five to seven years down the road" we may be tired of  "enabling him".   I thought about the enabling.  I had never really considered that word....but it fits.  We are enabling him.  We aren't helping him.   And it's not five to seven years down the road....it's NOW.  We are enabling him now and we are tired of it.   And right in front of Zack,  I let her know.   The group home came up again.   Two things Zack absolutely will not discuss....his substance abuse and a group home.   He covers his face and shuts down.

Then.... a discharge person took us from that group room into a smaller room where she gave me instructions as far as the meds, new prescriptions to fill...info on follow up doctor appointments....and information on group homes with contacts, NAMI phone numbers, and emergency phone numbers.   I haven't even looked at any of it yet...because from there I had to drop Zack off at home - he desperately wanted a smoke.....and then I ran to meet Alaina at "Family Services".

Alaina....the overworked, overtired case manager....wow I couldn't have been more wrong about her.  My initial impression - when she left me the phone message last month was so negative....but she is a sweetheart.  She cried with me about Zack's disease.   We sat down in her office and just started a little casual background conversation.  I told her what's been going on at home...and she shared with me what she sees in TAPS.  She is a group leader a few hours a week and has been able to get too know Zack a little... as much as anybody really can know him these days.  But she was being so kind and complimentary of him and described how she has seen glimpses of his funny personality and clever sense of humor come through unexpectedly.   She said he is such a "nice kid" and so polite...and that I did a good job raising him.   I saw her eyes watering....the whole situation really is so pathetic.....then mine did.  Alaina continued on about how he must be a very smart kid...I know I smiled....because thinking of Zack's old personality always makes me smile ....and I agreed... he used to be.  That's why this is such a painful bitter waste.  And thinking about the disgrace of that waste, I cried....the grief was just right there...fresh and agonizing...and it consumed me.   And she felt it...and cried.  She said she's a mom, too, and although she works with these people she cannot imagine living with it.  That made me cry more....because living with it is awful...and I was feeling sorry for myself at that point.  And so sorry for Zack.

We also talked about the custodianship - that is so serious it's a bit frightening. It's a big deal legal process, attorney needed, go before a judge, Zack would be assigned his own attorney and could fight it....and if we go ahead with the custodianship we would be responsible for everything Zack does.  I don't want to bear that weight.  That sounds like something that could very easily come back to bite us in the ass.  An alternative would be a power of attorney.  She was leaning toward that option for us and although I haven't read everything she gave me, I tend to agree.  Although she didn't come right out and say it, the power of attorney would be enough control to be able to have him hospitalized against his will if necessary.

The group home came up again.  We are going to get him on a waiting list.  One home has a three year waiting list...the other choice has a list with three names ahead of his.  Alaina told me it could be a year....We have to start now.  The local group homes do not take private insurance...that means we need to get the SSI application process going so that with time things will fall into place and we will be ready.  She was awesome to even suggest that the TAPS leaders put pressure on Zack to participate in his group, and if after a while he does not, he may be hospitalized again....and with hospitalization comes that direct to group home option.  We have that plan in our back pockets.  The "Family Services" crew knows the group home is what Zack needs.   And what we need.

She then advised me regarding the application for SSI.  What a rig-a-ma-roll applying for that is going to be.  Alaina told me she has a good success rate of getting it to go through on the first try.   I have a thick packet of paperwork to complete...then I call her for another appointment and we'll review it together..then call the social security office to schedule a face to face interview.  Once that's done, the paperwork will be sent to the state capital where it be analyzed by a panel of doctors...then they will gather more information from the doctors Zack has seen over the past few years....while we sit tight and wait a few months.  Alaina let me know they do not like to give disability to a young person, but with Zack having been hospitalized five times in less than two years that should really clinch it in his favor.  He is very sick.

After that visit with Alaina...and she thoughtfully tried to keep the time down to save me money...I left after 45 minutes...but "Family Services" charged me the full $70 and hour anyway.... I had to run to pick up Zack's new prescriptions.   The hospital has him on the Saphris...morning and evening, and the Lexapro in the eve, but their doctor also added Wellbutrin in the morning.  It is supposed to give him a little "lift".   It does seem - not sure if it's my wishful magical thinking - that he is a bit more "up".   I haven't really been able to test it much as I was on the go all day yesterday and he was so sick in the middle of the night and is still sleeping now...but he seemed more "with us" in the short time I was around him.  I have my hopes up....not too high, but the hope is back.

I ran the girls around to their activities after the pharmacy run...but when I was home, it was a return to the status quo with the shower running in the mid afternoon, the front door opening and closing as he goes in and out for smoke breaks, he was eating everything in sight.....and leaving the kitchen a shambles.  Zack is back.

To Be Continued.......

 

I remember sitting here, alone in WDW in 2009, waiting for the Halloween party parade to begin... My cell rang.  It was Zack calling me, asking for me to schedule him a psychiatrist appointment. 

I assured him I would as soon as I got home.  

We knew he needed help...but it was a relief to hear he WANTED help.  

That night he attempted suicide for the first time. 

   

Thursday September 22

SHIT.  That's Lucy's acronym for today.  So Happy It's Thursday. 

Before 10 am I already had eight wonderful supportive friends text me, call me, and message me good luck with today.  I am feeling very blessed to have such considerate people in my life.  And I'm trying to get a grip.  Count my blessings....and the terrific friends I have....always there for me....I am so forever grateful.

Zack also called...he sounded pretty good.  Fingers crossed for that Lexapro....that it's doing its job and pulling him out of his depressive funk.  But the truth is, he's probably about as cheerful as he'll ever be, even if the Lexapro has done nothing, because he knows he's leaving that specialty hospital today....and coming home to his room.   He asked me if I could come to the hospital for a "family meeting" at 11.  Not sure what the purpose of that meeting is.. - but I'll be there and then he'll be coming home with me after.   

A hospital social worker called yesterday afternoon to ask me if it was alright that Zack be discharged today.   I told her that it's ok with me as long as the doctor thinks it's in Zack's best interest and feels comfortable with it..Dr T does.  We also have a follow up scheduled - not sure when - with Dr. M....and then Zack will be returning to his "Family Services" TAPS group daily.  That's the plan for now anyway..... day by day.

To Be Continued......

We're ready to have you join the family again, Zack!

Wednesday September 21

I haven't heard anything from Zack.  There are phones for patients to use to call friends and family...but he hasn't called.  I know I shouldn't be surprised....but still.

Before we left Zack on Sunday afternoon I reminded him to call me if he was lonely and wanted to talk or if he needed me to bring him anything more to make his stay bearable.   I half hope he will be discharged tomorrow.  Life has been calmer here...and less mess in the kitchen, no towel issues....we've had hot water for our own showers.....and I have certainly felt less constrained daily.   Not sure why I feel that way...he's not a baby, but I do feel he needs us around - even if he chooses to enjoy the solitude of his room, and then there's that constant necessary supervision.  This past week with Zack in the hospital has been a nice short reprieve for all of us.  I really hope the meds have kicked in.  Especially the Lexipro.  I want a happy kid.

Shame..and secrets.  Heavy loads to carry.  The group home secret is kind of eating me up inside.  I don't like keeping things from my husband.   I don't like keeping secrets at all.  I'd rather just tell...and get secrets out in the open.  Everybody has something...so what's the big deal about a mentally ill son?  The shame.  That's what it is.  But I don't know...sometimes I think it would take such a heavy weight off of me - out from me -  if I could just say it....like it's really not horrible...the disease is part of our daily lives... Zack is part of our family.... and we accept it all - or do we?  Maybe if I could just tell it, I could come out of hiding....set myself free.  I almost feel like posting it on my Facebook wall.  Just blurting it out there for all the world to view....and contemplate.....and analyze.   "I have a 21 year old son with schizophrenia"...Let all my 524 friends and faux friends and friends of friends...everybody who chooses to.... behold my truth.   Then watch who scatters..... lol.   I wonder.   Or would people be able to relate?  I've read statistics about one in four people having mental health issues.... maybe there are more "friends" struggling out there than I'm aware of.  Maybe the reaction wouldn't be as disturbing as I fear.  And I'd be set free of the secret destroying me inside. 

I was so scared about having to go out for coffee with Laurie yesterday during dance class.  Afraid that I wouldn't be able to hold my horrid secret in...it was hovering too near the surface yesterday for comfort....and if I shared....what would she say?  Think?  We have known eachother casually for 8 years now.  Our daughters have danced in the same classes since they were three years old....but she doesn't know my family... or how Zack used to be....so wonderful.

When I arrived at the studio I saw her car....but I didn't see her.   I pulled out my water bottle...(see, I don't need coffee...I have water) and my happiness book and tried to absorb myself in it...dissolve in it...but I didn't even see the words...I was so nervous to be asked to leave the studio and head for Starbucks.  Out of the corner of my eye I saw her coming toward me.  I looked deeper into the page...this happiness stuff is so important....she said an enthused, "Hi! How are ya?".....and I was caught.   I was so lucky, though....she sat down, and we hung out at the studio and chatted about life stuff the whole hour....just casual easy talking and laughing.  She is great - lots of fun...She is the type of person that could open up about something serious and find humor in it herself.....I do think she's somebody I could tell the secret to and she'd take it well.....but it's still weird news to share...and what if I'm wrong?   Thank God we found other things to talk about and she distracted me for an hour with her entertaining stories.   I am still on page three of my happiness book. 

I have after school plans with Jojo and Lucy.  We need to finish shopping for Lucy's Homecoming outfit...and buy a few odds and ends the girls need.  I am looking forward to 3pm.  Lucy and Jojo are such a pleasure to spend time with.  We'll enjoy the last of our guilt free existence....Tomorrow, I believe Zack returns. 


To Be Continued......

This is the only picture I have of the three of us together...

....looking bedraggled after being poured on.....

but we are smiling!

Tuesday September 20

I have so much anxiety coursing through me today.  The only positive thing about that is a constant nauseous  no appetite feeling accompanies my anxiety...I cannot eat.   When I come out of this mess I will be looking good.  And I'll be happy.....something to look forward to....one of these days.

I have been so torn now that I'm aware of the information regarding the hospital directly to group home.   I almost unburdened myself on my husband last night.... at the risk of betraying my son.   I didn't, though.   I know what my husband will say...he'll jump at the chance.  He'll remind me how we haven't been able to help Zack here... how Zack does this and that and annoys us....I know exactly the stuff he'll say... because it's true.  Then I'd agree to the group home to make everybody here happy....but I'd feel like a loser quitter mom.  And a disloyal deceiver.

I have enormous guilt keeping the info to myself....but I have to do all I can to get my son well...here.  I need to try all the medications available and exhaust all options before I make the decision to kick him out.  That's what it will feel like to me..... failure & quitting on my part and kicking the kid out of my life because of that defeat.  I cannot do it to Zack after all the reassuring I gave him recently that the group home was only a down the road possibility.  He would never believe or trust anything I said again if I sent him away in two days.  I am going to have to go on Crazymeds.com and look up the clozapine... Clozaril...I need to learn more about that last ditch magic potion.

I had a nail appointment this morning.... a long quiet hour to think.  I was uncomfortable with my cheerless thoughts though and couldn't relax.... I tried to watch the tv, but there were two friends next to me - not my friends... they were friends... chatting and talking about clothes... and ebaying... and I couldn't hear the tv to distract myself nor could I evesdrop well enough to let them amuse me.  I almost broke down and cried three times....I don't even know why....what thought was passing through my head that was so upsetting?.....but I almost panicked.  Suddenly my eyes were full.... My hands weren't available to me to wipe stray tears....so I quick thought happy thoughts.... of  my daughters,  Penny, and Disney fun... It worked well enough.  I didn't embarrass myself at least.  I think I'm losing the depressed battle.  Or maybe this is just a phase because life is particularly upside down right now and I am keeping the group home possibility a secret...guilt.  I'm hoping this bout of sadness passes.

I started reading my "The Happiness Project" book yesterday.  I only read the intro and three pages... it seems like it's going to be an easy read though...and it kind of already meant something to me.  She mentioned things I could absolutely relate to.   I just didn't have time to read further.  Something happened... with a friend that upset me...and I couldn't even concentrate on anything else for the rest of the evening.  So my foray into my happy project was a bust....but I am carrying that book in my purse with me to read any opportunity I get.  The only thing I'm worried about is if I'm too far gone for it to help.  I remember a psychiatrist saying once, though...that the average depression lasts six months.  I hope things are settled to my satisfaction with Zack's life before Christmas....I want to be able to be happy at Christmas.

I walked Penny...it's a beautiful summer into fall day here.  It felt liberating to be outside in the sunshine and breezes.  Penny enjoys the walks as much as I do.  I've been avoiding my neighbor again...when I walk with her it's too much talking and slow walking.  She doesn't know Zack is in the hospital and I'm not up for telling that tale.  I prefer to just put my music on....soothe my nerves, and walk as fast as possible to burn up that excess anxious energy.  Penny appreciates that type of walk most, too.  The kind where we can pretend we're running away...

I am not looking forward to Jojo's dance class later today.  In fact, I'm dreading it.   Last week I promised a mom acquaintance friend that I'd go out with her for coffee during the class.  I'm just really not up to it....I wasn't last week either - so last week when she asked, I said "next week for sure"..thinking to myself of course I'll feel better "next week"...next week is here and now I feel stuck...and bad.  I don't think I can easily slap a smile on today.  I should really spend the time reading my happy book instead. 

To Be Continued.....

The subjects of my happy thoughts....

Monday September 19th

Woke up late today.... well I was a good mom and I did get Jojo up and kept her company until she had to catch her 7 am bus.  Lucy had "late start Monday" so she was on her own, getting a ride with her boy friend.  After Jojo left I crawled back into bed.  Penny kept me cozy company for a few hours.   The phone ringing is what finally woke me.   "Family Services" on the caller ID.......

It was the case manager, Alaina.  She wanted to know if I wanted Zack to be discharged directly into a group home.   Wow...that group home hope has come to haunt me.

I was caught off guard.....honestly, Zack in a group home now sounds fantastic to me.  It would free me up...I do feel so stuck....I wanted a little long weekend family Walt Disney World escape.   We need it - but the fact is Zack left behind at home is just not a good idea right now...I would love to be free again, but I can't do that to him since I just yesterday assured him that the group home is something in the future - a possibility.... not a reality that's just around the bend on Thursday....but the more I do consider him in that group home the more it appeals....I can't betray him that way though...even if the girls would appreciate it....and my husband.....Zack living somewhere else under somebody else's watch, messing up somebody else's life, roaming somebody else's halls..breaking somebody else's rules, using somebody else's towels and hot water.... would make his day.   I can't do it.   I need to see if Zack is able to be better and improved here at home before I can make that commitment....I'm not going to tell my husband this quick fix option was even offered to me. 

Alaina explained that if the doctor orders it, if I request it.... Zack could go directly into a group home from the hospital on Thursday.   There would be no waiting...no interview....like there will probably be when I can finally commit to having him live in one.  I did not know there was a difference in how a person gets accepted into a group home...this was brand new news to me this morning.    I just pray that there is improvement ahead for Zack on the meds and maybe the group home will be a non issue.... he is such a smart good kid...I want him here - well.... going to college.... working part time... a member of our family again.   Not some distant pain in the butt skeleton in the closet we shipped off so we don't have to deal with him....because the truth is, that's what the group home hope is to me.  When things are so tough here... and I feel done and defeated.... I need him somewhere else.

Alaina and I still have our appointment on Thursday afternoon.  She is going to help me with the social security paperwork, the custodianship, and have some info on group homes to share with me.   Maybe if I can understand the benefits of the group home I won't feel it's a last ditch... something a worn out quitter loser mom resorts to when she's fed up.  Alaina reminded me that my insurance doesn't cover her fees, but she was nice enough to tell me that if I had any questions that could be answered in a quick phone conversation she'd be happy to help me for free.

It's a dreary quiet day here today.   Just Penny and me....and she naps a lot during the day.  I'm getting a lot of Disney work done....but the silence is deafening.   The girls were home sick at the end of last week....so at least I had them around.   Today... just Penny's snoring is keeping me aware I'm not alone.

To Be Continued......

Keeping that magic in my view....

Sunday, September 18th

We went to the "Specialty Hospital" to visit Zack today.

We entered the hospital...this time greeted by a female police officer at the desk.  She asked who we were visiting, "My son......" (again that little humiliation) - I said in a confident, I do this all the time it's no sweat voice. She checked the list, and said we would have a couple minutes to wait.  Apparently they are very strict on the 2 pm start to visiting time.....We sat in the little lobby for two minutes.  Already waiting was a young lady with a baby in a stroller, an older woman seated, and an older gentleman checked in right after we did.  I had just that short time to wonder what their stories were...who were they here for?  Then the police officer said "Fourth Floor visitors can go up."   We had to stop and have a green "visitor" stamped on our hands.  Then it was back on that direct to the fourth floor elevator - with the strangers this time.

We were stopped to check in at the nurses' station.  They hung up our jackets, took our purses, and cell phones, and the Target bag full of candy I brought for Zack.  They let me take two boxes out to bring down to his room.  No questions asked about it today. 

Good thing I knew where his room was..they just sort of set us loose...I showed my husband....down the hall on the right.  Room 402.  It was dark and dreary.... Zack was sleeping facing away from us...in the same clothes he had on on Friday when I stopped by.  We walked in and he woke.  That's how he spends his time....sleeping.  He seemed pretty happy to see us....I hugged him and handed him the candy.   My husband and I sat in the plasticky pink chairs...and Zack stayed in bed, sitting up.  He looked rumpled and unshaven. Today he had three empty soda bottles of Orange Crush on his nightstand.  I asked how he's eating.... he said fine.  And I double checked with him that his food has no bugs in it...He took my question seriously and said it is OK this time.  Good news.  He looks thinner, though....even with all the candy and soda... and no smoking.

We chatted a few minutes.  The first thing Zack asked us was about going to the group home.  Ugh.  I told him he needs to just chill on that subject.   My husband wouldn't chill on it.  He explained to Zack that in the past nine months Zack has not improved by living at home... yada yada...blah blah blah... on to try and extol the benefits of Zack living somewhere else...with strangers...under supervision....in a group home.  Zack just stared at him...maybe trying to comprehend that the group home is something his dad sees as wonderful.  Then my husband ticked me off more...asking Zack questions in a statement form and ending with a "right?"....because he wants to hear the answer he wants to hear....not the real true answer.  He did this several times...and I wanted to kick him under the table...but there was no table and I figured me kicking Zack's dad...in a mental hospital in front of my depressed kid wouldn't be kosher.  But I was itching to.  And he kept nagging about the candy.... how Zack shouldn't eat it all... don't make himself sick.  For God's sake...the kid is 21 years old.  If he wants to eat ten boxes of candy and vomit it all up let him.  He's bored, vegging his days away in a mental hospital.  Whatever.

Zack now has a room mate.  Not good.  The guy was kind of.... odd.  Ha. but he was.  He came in at one point...closed the hallway door.... and I had my back to him but got chills...wondering what is he doing closing us in.  Even me...mom of a mentally ill person, gets a bit creeped out by mentally ill people.  I am still not used to it all.  The place...the people...the scrutiny...the pity....the surreality.  We only sat a few minutes with the guy in the room and I asked Zack to show us around....so we walked down to a couple of the "group rooms".   These have more comfortable seating than the pink plasticky chairs...and TVs, DVD players, DVDs....books, magazines.... but as soon as any other person walked into the room it was obvious that Zack became uncomfortable and led us out.  One time a nice guy offered, "No, go ahead and stay"...but Zack said "We better leave."   So we wound up standing in the hallway.   There was a cart with soda and milk on it.  Zack helped himself to a carton of milk.  Snacks are offered throughout the day - just not during groups.   Like the ipod... no snack reward if you don't go to group.  No surprise, Zack has not gone to a group.   I again tried to convince him to go.. if only to make the time pass...and see different scenery and faces..... I know he won't go.  He prefers to sleep the time away.

He didn't seem any better today than when I saw him Friday.  I'm not sure what I expected....but it was my stupid magical hopeful wishful thinking.... I wanted him to be better today.  Any sign of better would have fueled my hope....but I saw none.  The visit was on the pathetic side.  I arrived all cheerful and left feeling....hollow.  I felt unfulfilled....it was difficult seeing him there...so alone even on this full hospital floor...uncomfortable and bored in his dreary dark room...with his new odd room mate.  We lasted less than 20 minutes.  We were the first to leave.  While standing awkwardly in the hallway, digging for things to talk about, I asked him if he wanted us to stay longer....I felt unwelcome....and wanted an out.....at this point, he didn't care that we were there.... he said "What is there to talk about?"  I asked him if he wanted to go back to sleep... he told me "Yes, actually." That was my out.  Time to grab our jackets.

I hugged him and told him I'd see him Thursday.  I tried to say it in my most reassuring voice.  My FOR SURE and COUNT ON IT voice....because I know he does worry about getting out.  Who wouldn't after being in a mental hospital for 6 weeks at one point?  That must have seemed an eternity in hell.  I don't want him to feel deserted and forgotten.  Not for a moment.

I am really feeling loss today.  I woke up to it.   I woke to a dream about my beloved Newfoundland, Tatum.  She passed away almost two years ago, but she was the dog buddy love of my life.  I have owned dogs since I was a child, but I have never known a dog like her.  She was amazing in so many ways and anyone that knew her recognized her specialness.   Tatum came into my life when I was at one of my lowest points ever... Lucy  had just been diagnosed with Retinitis Pigmentosa...she was little and didn't know what it meant for her...but I did.  The first doctor told me coldly and clearly that my treasured daughter would be totally blind by her teen years.  The news left me really really deeply depressed.  That diagnosis was the first time something truly horrible entered my life.  I was not prepared as a parent...to deal with horrible.  Until that grim news....I had no solid concept of horrible.  How horrible feels... and how horrible takes.

As things go, though, life worked it's magic and I happened to see a documentary on Louis and Clark.  Meriwether Louis owned a Newfie that traveled across the country with him.   I saw that dog... Seaman....and something in me clicked.  I knew for a certainty that owning a dog like that would be my magical fix.  I don't understand what it was, but there was something about that big, noble, proud, intelligent, cuddly animal....The next day I was filling out applications online from breeders and in a couple weeks I was the thrilled owner of my Tatum... a sweet, beautiful, loving, loyal girl.  My best pal and constant companion for five years.  Her devotion and affection pulled me out of my despair and I was able to be the mom my kids needed me to be.  I believe things happen for a reason and I swear Tatum was an angel sent to me from God.  It's true...she was my magic fix in a fluffy fur coat.  My miracle.  And through those Tatum years, Lucy grew into a fabulous young woman who handles her visual impairment with grace.

I still grieve the loss of my Tatum.  I remember the day I had to put her down....she was so weak and sick.  I hovered over her silky black fur... petting her and crying... whispering my love...letting her know I was there with her, trying to give her some comfort.....like she had given me for years.  My clear memories of that gray cold morning still tear me up.

Today, in my dream, I had a house full of Newfies roaming in every room... all black... full grown and some puppies.... I searched desperately for the one with the white spot on her chest.  My Tatum.  I found her and the two of us  went together on a quest for another lost friend....

Penny woke me up with her soft snout in my face.  So funny.... after the death of my Tatum, I was bereft.  I needed to fill that pain caused by the torn up hole in my heart... I bought Penny from the same breeder within a month.   I named her Penny from Disney's "The Rescuers".... I thought she'd be my rescue dog.  Rescuing me from my heartache.   I learned something important from the experience.  You cannot fill a hole...there is no quick band-aid patch for grief.  Penny is precious to me...but she is very different than Tatum was.  I still miss and grieve for Tatum.

I miss Zack...who he used to be.  The loss of my son feels raw today.  I am trying to hang onto hope...the new medications really haven't had time to help him yet.  And I'm trying to hold onto hope that life will work it's magic once again.

 My beloved Tatum and me

Saturday September 17 Part 2

No sooner did I finish my previous entry......Lucy found me.

She stood about six feet from me....looking pathetic and strained and said, "I'm sorry."   Then she cried.  I cried.  We smoothed things over between us...while maintaining the physical distance.....I tried to explain my point of view and I apologized for blowing my top....but I really have to remind her that it is true.  I live my life around my kids.    She said it hurts seeing me upset all the time....which I don't understand.  I thought I was hiding my "upset" fairly well.  It seems not quite well enough.   More explanations and remorse from me..... She said,  "We all feel it.... this horrid thing with Zack."   I honestly believed I was keeping the girls as distant from it as possible....conducting the business of their lives as normally as I could, considering the abnormal in our household.  

About fifteen minutes later, Jojo found me.   She had showered after soccer and dressed cute for running errands.  She asked me...as if no explosion had occurred recently... "How do I look?"..... I told her adorable.....always.   And then I said... "Jojo... I'm so sorry."......and she closed the distance between us... and hugged me.. she said, "I know."....more tears.   I hugged her back tight and told her I love her so much.   She continued to hug and hold me.   She knows the true cause of my anger.   The root of my bad temper....I wonder if she has it inside her, too.    The embrace went on for a few minutes.  I remember reading a long time ago not to be the first one to end a hug....so I let it continue until she was ready to release me.  She really needed that closeness....as did I. 

We blew off the planned housework, choosing instead to run errands all together as a family.  We went out for ice cream, and we are going to relax, watch movies, and order pizza later.  We need to try and remember what we were like before the constant sad presence permeated our lives.   I need to try harder to shelter the girls from the disease....and it's effects on me.

To Be Continued......

I want their lives to be full of sunshine and happiness

Saturday September 17

Nobody wants to hear the truth.

It's been a busy soccer morning into afternoon.  It was picture day for the whole league...so lots of time spent out there on the field waiting around and chatting with other parents.

I wound up conversing with two new people while we stood around waiting our team's photo turn.  They were moms of girls on Jojo's team that I kind of know, but not really. Inevitably they asked how many kids I have... how old.... the usual small talk parent questions.  Today I am at a vulnerable point with Zack's disease.  The hospitalization sticks it in my face.  Today I can't pretend the illness doesn't exist...that he's getting better....things will just work out to a happy ending.  I was secretly praying neither would ask the status of my 21 year old.   Most likely today's answer wouldn't have been prettied up.

I can sometimes throw the magical perfect answer together that he's going to MCC and delivering pizzas....that's actually his goal.  He says it often enough...."I want to go to college and get a job delivering pizzas."  I believe people appreciate the simple, easy to understand, shallow answer....but with the reality of his current situation hanging over me...my son is psychotic, spending his days vegging in a mental hospital... I wasn't comfortable with my confidence level in my lying ability.   I was extremely lucky...or they were...They did not ask.  I don't think I could have lied.  Today I probably would have just answered that he's mentally ill spending the week in a "specialty hospital"...in my moment of weakness.  Nobody would have enjoyed hearing that.

At half time my husband and I talked about our afternoon plans.... I said  I need to catch up on my housework....and part of that means I want to get all the towels up off Zack's floor and washed, wash and change his sheets....and do some of his laundry, too.  He said he wants to get all the garbage out of Zack's room - the cans, empty candy boxes and wrappers....other trash... and vacuum.    He'll probably also go on Zack's computer and see where Zack's been....and what he's been learning about online.   That's what we do...Each time Zack goes away for a hospital stay we clean up his life here at home....so he can start fresh when he returns after being discharged. 

I am embarrassed of myself, too, today.  I lost my shit on Lucy.   On everybody here, really.....

After soccer, on the way home.. I wanted to pick up a Diet Coke...so we pulled into McDs.   That's all we were planning to order.  At the last minute, while in the drive-thru, Jojo asked if she could have a Happy Meal....

We got home, walked in, and there was Lucy in her pajamas standing in the kitchen... it was almost 2 pm.  She saw Jojo's food and started griping about how we didn't bring her anything....then about how she missed Chinese food last night - which my husband and Jojo ordered...Lucy had to be at a high school football game with the marching band all evening so she didn't eat dinner with us......  Well this morning for the past three and a half hours, we had to be at soccer...Jojo up early, running around like crazy....was hungry... so sorry.  Jojo has activities too and Lucy could have come with and then she could have ordered at McDs.

I reminded her it can't always be about YOU.   Then she started in about how it's so late today already she can't invite a friend over..... blah blah blah.... it was all about her....and I totally lost it.   I just let loose.  I am so overwhelmed...and hearing all this bitching about her own nonsense when the true reality is I live my life around my kids lives.... When was the last time I had fun?  I cannot even remember fun.  What is fun?  What does it feel like?  What can I do to have myself some fun?   I WANT FUN.  I told her I'm so sick of my crappy shit hole life....and so tired of my life revolving around everybody else's.  I AM.  TIRED.   I have to look forward to an awkward unpleasant afternoon visiting Zack in the hospital tomorrow...that's going to be my Sunday afternoon "fun".   I am weary and exhausted....and pissed off.   I think I scared everybody... including myself.

All this bottled up garbage I have...resentment and anger...lies....hopes....wishes...sadness...defeat....and I am tired....just really worn down.    I honestly can't remember the last time I screamed at my kids.....but today I exploded.   I used language I never do....and said things I shouldn't have.  Hurtful things...but now my nasty truth has been revealed and the awful words are out there....floating in the air in this house..... Now I'm keeping to myself and hiding because I don't even know how to handle it from here.   How to take back hateful words......that are true.....

To Be Continued.....

I'm feeling like a witch today for being honest

Friday September 16th

Isn't life strange....A turn of the page....Can read like before.....

I went to see Zack today.  I'm always uncomfortable with these visits...the mental hospitals kind of creep me out.  And I always feel like I'm being scrutinized while I'm there for whatever I say or do... ha.  I sound paranoid...but it's true.  They watch you during visiting.  You're almost on display and you're usually guarded.


This hospital wasn't as bad as others though.  I've visited him in four so far - he's been in this one twice but the first time, in June, I did not visit.  He's been in three private hospitals and also one time a state facility - before he had insurance.

I was so afraid of that state hospital.  I had nightmares about what that one was like...I googled my days away searching for information, descriptions...experiences..anything to calm my nerves about where they took my son...I had no rights..no choice or say...he was over 18, he was psychotic, and he was uninsured.  I made phone calls...nobody could tell me anything.   It's all kept so hush hush.  That state mental hospital is the one he spent five weeks in last November to December when he had his first psychotic break...where he was diagnosed with schizophrenia.  He had been there a couple weeks before I was permitted to visit him.  The wait was excruciating.

When you enter the state mental hospital, you have to take everything out of your pockets, take off anything that isn't necessary clothing, and leave it all with your purses, wallets, keys, cell phones..etc in a locker.  You go through a metal detector and/or get the wand.  Then they escort you through several electronically locked doors to a little visiting room where you are monitored for an allotted amount of time - and they only allow so many visitors in the room at one time.  You have to get there early in the day.  It's like a prison....not that I've ever been in a prison...but the security in a state mental facility is what I imagine it is for visiting inmates at a prison.  The state hospital was H. Douglas Singer Mental Health Center in Rockford.  Intimidating as all that security was....The employees were wonderful.  Everybody was helpful and kind...from the guards to the nurses.  I'll definitely give them a shout out for that.  They deserve it. 

Today I just walked into the sunny lobby of the "Specialty Hospital" (which wasn't always a specialty hospital...it was a community hospital when I was a kid growing up in that town and I candy striped there) with my big American Eagle shopping bag full of goodies and spoke to a nice older lady sitting behind the desk.   I told her my son is on the 4th floor (a small humiliation) and I brought him some things.  I also let her know that I was told to call up when I arrived....maybe I could visit Zack for a few minutes.   Visiting hours during the week are only 7 to 830pm...so I was grateful the nurses were kind and stretched the rules and let me come up.   No security checks...just had to get on a particular elevator that only stops on the 4th floor. 

Early this morning I called to speak to the doctor or nurses...anybody...and make sure he was on the right course with his medication because when I finally got to talk to somebody yesterday (after the releases were signed), he wasn't.  Some mystery doctor had called in Zyprexa and Ativan.  Zack has never taken Zyprexa...it was the convenient anti psychotic to dose him with, I guess.  And then they gave him Ativan for his anxiety and to knock him out.  I was miffed that they'd just automatically give him any medications without even bothering to check with anybody regarding what he's already taking.  I let the guy know I was thinking what the hell?....the guy was sarcastic, too.  But I was in the right so I gave it back to him....he woke Zack up, got him to sign releases so that the morning doctor could speak with Dr M. 

LUCKILY....and I mean this is such fantastic news... the jerky arrogant doctor that was in charge in June is on vacation!  This morning I wound up speaking to a really nice woman doctor, Dr T, that even had concern and caring in her voice.  My mind was eased after speaking to her.  One of the first things she asked me, though, was how I felt about a group home..and if Zack was welcome back here or if I wanted him to be discharged into a group home....gosh that kid is really panicking about the group home thing..he even told her he was worried he was headed there.  I almost cried.  I told her I want him to get well and live with us.  It's the truth...my deepest magical wish is for him to be well....and welcome in our home.

I informed Dr T of the medication modifications Dr. M had suggested..(because nobody showed anybody the signed release from the night prior...and nobody made calls to Dr M for info)..the additional 5 mg Saphris...and then adding the Lexapro.  Dr T is going to do it.  The difference is she is adding the 5 mg in the morning (like Dr K recommended) and then the Lexapro in the evening as it may cause drowsiness.  I have hope that this next week in the hospital may be beneficial to Zack.  I am praying for it.  Dr T also bent the rules and wrote out an order so Zack can have his ipod - that's a hospital first -  and she allowed me to bring him some candy he likes.  When I told her his only real enjoyment is candy...she said "awww...."  like she actually cared and understood.....

Right off the direct to fourth floor elevator was the nurses station.   I was approached quickly by a woman that works on discharging patients.  She introduced herself and told me that  Zack signed a "five day"...which means he will be released in five business days...so we are looking at next Thursday.   She also gathered information from me about his history.  Then she went down the hallway to his room to see if he was there or in a group.   He was in his room of course...and she walked him down to the nurses station to me.   I hugged him.  It was the first hug since last winter.   I always feel so rotten when they take him away in the ambulance....against his will.  I had such guilt yesterday.  I hugged him for me....awkward...stranger or not, I needed to hug my kid.  I also hugged him before I left.  I think we both needed those hugs.  I'm going to try and make a point of showing him more affection.  I want him to realize how much I care...and how sorry I am..


The nurses kept my purse behind the counter, and while I greeted Zack they searched through the bag of items I brought in for him before allowing him to have any of it.  They cut the drawstring out of the PJ pants....took the socks and underwear out of the plastic packages....cut tags and elastic off the new slippers...yes I found and bought new slippers for him...another benefit of him being in the hospital.  And he liked his new slippers and put them on immediately.  I need to remember to purchase an extra pair.  I helped him carry everything down to his room.

The room....spare.  That's the only word to describe it.  Like a hospital room only more empty and bland.  I was never allowed to see his room at the state mental hospital.  Here there were two beds... very plain low beds covered in thin blankets, a pillow resting on each...a nightstand between them.... two simple pink vinyl covered chairs....another higher rolling table and a wardrobe cabinet...with no shelves, hangers, rods...nothing.  He dropped his pile of clothes at the bottom.  There are no outlets...the windows had special coverings.... there is no TV..no phone....just four walls, two beds, and some odds and ends.   No room mate.

Zack had three bottles of Sierra Mist on his nightstand table...all three already open and in different states of empty.  The nurse had let him choose three boxes of candy to take to his room...he put them on his nightstand with the soda and opened one right away.  The candy was what he was most excited about.  I knew he would be..I'm so glad I asked if I could bring him some.  He thought his ipod was broken...it only needed a charge.  I got it half charged at home on his computer and I was relieved I was able to find a wall charger, too...so I brought that.  He kept asking to use his ipod but the nurses would only give it to him when group was over.  They want him to attend the groups....no reward of an ipod for not participating.  Understandable. 

Something I did not know... I had asked if I could bring him cigarettes....they actually give the smokers a nicotine patch instead.  At the state hospital the patients had to purchase cigarettes and they are taken out into a courtyard for supervised smoke breaks.

It really was a decent visit.  We walked up and down the hallway a few times....then we went to his room...sat in the plasticky pink chairs and chatted about how's life going stuff.  He said "One day down"....and really wanted reassurance that he'd be discharged NEXT Thursday....not some distant Thursday weeks from now.  He asked about everybody at home.  I asked him how he spends his time... what he ate so far.  I am worried about the no eating situation....He told me he slept through breakfast but he had mac & cheese for lunch.  I asked if it was edible..he said "better than last time with the bugs in it"....Wow.  I can't believe he even remembers.  His comment kind of scared me.... I cautiously asked what he meant...and yes, he remembers the horrible bug hallucinations he had in June...but I think he still believes they were real bugs...So today he was happy they served non-buggy mac & cheese.

We talked a bit more...I had to work at conversation....but he answered my nonsense questions all the same.... soon he wanted to check and see if  it was time for him to have his ipod.  We walked back to the nurse's station.  Not quite yet....group was still in progress....I tried to convince him to maybe try a group tomorrow....the day will pass faster.... he seemed to consider it....but I'll be surprised if he does join in.  I stayed with him about 30 minutes.  It was a satisfying visit - he seemed more clear headed today..and I don't understand why.  The additional 5 mg Saphris couldn't have kicked in that fast....but I was happy the visit went the way it did.  I never know how I'll find him.  That's another reason I hate these trips to the hospital. But today...when I left I felt sadness only because I was reminded of what a sweet and polite kid he is - every interaction he had with everybody there showed it -  And how badly I want him well....and home...back to himself.

Before heading to the hospital, I stopped at Target to buy what I wanted for Zack.  I was browsing the books and magazine section to see if I could find something that may capture his interest and help pass the time...I had a few things in my hand... then set them back.   Not worth it.  I was using some magical wishful thinking and fooling myself about him concentrating enough to enjoy reading.....but I did wind up buying myself a new book.  "The Happiness Project".... It caught my eye and I felt like that particular book was sitting on that exact shelf waiting there just for me.  Time to work on finding my lost happiness.  I miss it and need it back.

Yesterday afternoon, after seeing Zack taken away, was so dreary, desolate and gray..... I even pulled a Zack and took a long hot shower in the middle of the day... I was so cold and just couldn't get warm....that's the reason Zack gave Dr M for why he constantly takes his two hour long showers.  He is cold.   I moped around....and I felt restless and directionless..and still cold.   The house didn't feel calm.   Even though Zack is just a silent shadow presence...that presence was missed here.   How strange is that?  The house felt even emptier without him.  What a quandary......

This afternoon I was extremely busy with Disney....that kept me from being directionless at least.  What a weird irony...mental hospital morning... magical Disney afternoon.  When I had the opportunity I walked Penny...my partner in escape and quest for peace.  I've loved the Moody Blues forever.. and their "Isn't Life Strange" came on my ipod first thing......

Wished I could be in your eyes
Looking back there you were, and here we are.

So sentimental.....and so true.  

To Be Continued......

To throw it away.....To lose just a day.....The quicksand of time
You know it makes me want to cry

Thursday, September 15

I woke up in the dark...in the middle of the night and couldn't fall back asleep.  I think that's why when the alarm clock finally went off at 615 I had extreme anxiety....so tired.  I was excited to see the new doctor... but uneasy at the same time.  I think I had a premonition.....

Zack wouldn't eat breakfast....nor would he pack anything for a lunch or snack.  He didn't even want a can of soda....he brought a bottle of water with.   Really...something is not right about that.  It's out of his abnormal norm.   He was so restless he asked if we could leave at 905 versus the 920 we usually leave the house.  I held out for about 5 more minutes and we left at 910.... we arrived, checked in, and we sat and waited only a few minutes.  Zack wouldn't sit next to me.  That's his norm.

We went into Dr M's office...she is "Family Services" chief psychiatrist... or chief executive psychiatrist... I saw an important looking plaque with a big title next to her door.  Her office is a nice sunny corner office with leather chairs. We made ourselves comfortable....not next to each other...because that's how Zack is comfortable...apart.  Another lady came in with a steno pad.  I later discovered she was the "Linda" that Abby and Courtney put up to making the discharge (kick) Zack out of TAPS group phone call.   She was there taking notes and answering any questions Dr M had about Zack in the group.  She seemed like a very nice lady and she and Zack seemed to have a rapport. 

I really do like Dr. M.  I am happy with our choice of her.  We're on the right path now...I feel it.  I think she really knows her pharmaceuticals and her mentally ill patients.   She is kind and sincere when she directs questions at Zack, and she responds to my questions respectfully.

Well.... she started off asking Zack how things are going....he always says "fine"....but they're not.  She got him to open up a little more and then involved me in the conversation, too.  She has a goal of getting Zack up to 20mg Saphris in one dose in the evenings.  Then she said he should be on that for six weeks - that's the optimal dose and time where we'd see if there is any real benefit to the Saphris....but she also thought that if we didn't see improvement in two weeks we may not in six.  Next step Clozaril.  She has hopes for dramatic changes on that nasty but magic med.  She said she's seen that magic pill work where nothing else has.....that fits the bill for us.  I'm ready.  I wish we could dump the Saphris and get going on that Clozaril now.

We talked about Zack's gloomy hopeless mood of late....and his non existent appetite.  He stated several times that he was concerened about the group home.  Out of the blue... he would bring that darn group home subject up.  He is obsessing on it.   He doesn't want to go to a group home.  He has done his own research and doesn't like what he read.  He is very tense about that idea.  He wanted immediate reassurance that he was not headed for a group home.  The doctor and I both told him that it is not in the imminent future...we want him to get better and live at home.  I really do...that would be my happy fairy tale pixie dusted ending... Zack better and with us.   He told her he wants to get a job and go to college... he always says that.  I wonder does he really? Or is that what he knows we want to hear? I am thrilled he says that, though... maybe down deep he is clinging to some hope for his future.

After hearing about Zack's sad mood, talking about the excessive showering, and seeing his anxiety over the group home, Dr M suggested an antidepressant.  She wants to add Lexapro in the morning.   But then...on to  the burning.  She asked Zack about it...why he did it... he said he felt he needed to...to relieve some stress and anxiety.  But then, on his own he acknowledged that it's not a good coping skill and he promised he won't do it again. There was a discussion about hurting himself....possibly burning the house down.... other consequences of this dangerous practice.   She told me he really needs constant supervision right now.   Then she looked at me and asked if I had considered  hospitalization until he's stabilized...Zack was upset about this possibility being thrown out there... but I let her know my husband was surprised that Zack wasn't admitted after his appointment with Dr K...and that we almost do want him hospitalized for his safety...and ours.  She nodded her head in agreement.  She wasn't feeling confident that Zack wouldn't harm himself again under her watch.  So that was it... the process started.  Paperwork....certificates.,,..phone calls...

Two hours later, an ambulance came, took Zack out a secret side door, and directly to where they had a bed for him on the fourth floor of the "Specialty Hospital"...and that is exactly what they call it.  "The Specialty Hospital".  I know because I phoned over there to ask to speak to somebody about my son....and I was told, "Sorry...he hasn't signed a release yet".....He signed releases so he could talk to us and we could visit, but they did not offer him a release so that his parents could speak to staff about his condition or care.  I was advised they don't do that right away....it's not part of their intake procedure. They wait until a social worker can evaluate the patient and recognize the patient's support system.  I told her...WE ARE HIS SUPPORT SYSTEM....so get somebody to offer him that release.  Geeze.  Who do they think pays the insurance and the co pays?  So, sounds like their standard practice is to give psychotic patients the option to go it alone, be responsible for themselves.... or have parents, family, friends involved - if they understand what they're signing.... great.   I told her he probably doesn't even realize what he did and did not sign.   She said they'd try and speed things up and to call back in a few hours.....

Zack is in the same hospital he was in last June when he tried to electrocute himself.....the one that really let him down.  At least this time all they need to do for him is add that Lexapro and get him stable..so he can be safe.  The crummiest thing though, is now that he's admitted, Dr M has no say over his care.  The arrogant doctor in charge of the fourth floor plays God.  The all knowing doctor...that we just received a big bill from...that did not have time to speak to us or Dr K in June and released Zack before he was ready...and then Zack dropped out of the rehab group and hit the substance abuse again hard.  That fourth floor doctor does what he wants and doesn't bother to check into a patient's history or current medications.  The doctor gets his info from the mentally ill patient.  That doctor actually told Zack his substance abuse problem wasn't bad enough to need help....because he listened to, and believed, what Zack told him.  What a joke.  We had a horrid experience with the "Specialty Hospital" in June.  Hopefully Zack will be out in a week or so and feeling better.  Dr. M said it would be a "brief stay". 

I am emotionally drained today.  I should feel OK about the situation...Zack is where he needs to be.  My anxiety is gone...replaced now by sorrow and guilt.  I understand he's getting the supervision and additional medication he desperately needs...but it's all just so sad.  It  kills me a little bit each time I have to put him in a hospital against his will.  Chips away at me....I don't know how or why.  Can't figure it out to explain....but it is wearying.  All I did was sit...wait...listen to the noisiest clock I've ever heard in a quiet little room.....and then it was done.  And I feel wiped.  It wasn't as surreal as checking into an emergency room.  "Family Services" did all the preliminaries for me.  Made it easy...but it was still terribly tough.

To Be Continued......

I feel like I need a little TLC from my big teddy bear

Wednesday, September 14

I just brought Zack home from his group.  He was cooperative this morning about going..thankfully. I was worried last night how it would play out today.  He said he wasn't hungry at dinner last night....and as far as I know he hasn't eaten anything today.  It's not because he's "sick", either.  Something odd is now going on...well, new odd.

I hear the shower running....which means he must have already smoked his half pack of cigarettes so he's enjoying his other vice.  He's not going to be happy in the shower for long.  The dishwasher is running and I'm doing a load of laundry.  Washing a ton of bath towels.....and there's a whole pile more lying on his closet floor.

When he got in the car after group, there were some quarters on the floor of the passenger side from earlier when I bought a Diet Coke and put the change on the seat  - it fell onto the floor.  Zack got in, spotted the money, and slowly reached down for it.  I thought how pathetic he looked....like a homeless beggar, picking up scraps.  So pitiful.  He has no money of his own and it always makes me cringe when he asks for fifty cents for a cigar.  I hate seeing my son in this position of having to ask for a pittance..or grab it up off the floor.  I casually asked, "What are you doing?" and he answered..."Oh, is this your money? I thought it was mine."....how could he even think it was his?.....he has no money...we have to keep him that way.  Broke.  That was a weird answer...but then again......

While I watched him bend down and scrape up my change, I said a cheery, "How was your day?" and he actually replied with a bit of personality in his voice that it was fine and asked how mine was.  I asked him if he kept his head up off the table today, and he said he did...but he couldn't tell me anything they did in group. "Nothing" is what they did for five hours. 

I was in a talkative mood today and not so easily going to let myself be brushed off.  The personality in his voice egged me on to try and involve him in a little conversation.  Zack didn't eat breakfast...and he did not pack a lunch or allow me to make him something to bring to group, so I asked him if he ate anything today.  He said he did.... "they had food there".  I asked what he ate... (knowing they normally have no food there, but maybe it was a special day..?.) After some prodding and sharing what I ate today, he told me he had cookies.  I told him I thought that sounded like a yummy lunch.  I was jealous...what kind of cookies?   He barked something unintelligible at me in frustration... I guess my curious cookie questions were becoming too nosy..... .too personal for his comfort.   But then, to pacify me, he told me he ate chocolate chip cookies...in a get off my back tone of voice.  Conversation over.  Sure he ate chocolate chip cookies.   Something is wrong that he won't eat.  Glad we are seeing Dr M tomorrow morning.

Zack refuses to take the recommended additional 5 mg dose of Saphris in the morning.  He said it will make him too tired.  Another reason I'm happy we have the psychiatrist appointment lined up.  He needs to be compliant with his meds.

The case worker manager lady called me back.  She didn't sound tired, cranky or overworked.  Relief...and a little bit of magic in my day.  I really need some guidance with this whole scary situation we're heading into.  I have an appointment to meet with her next Thursday afternoon by myself without Zack.  Good thing Zack signed a release a while back or I'd have no right to speak with anybody on his behalf without him there...even though he's psychotic he would be in charge of himself because he's over 18.  What a system we have in this country for the mentally ill.  And not only that...they'd stick me with the bill.  I'd have no say in anything regarding my son's care except the payment.   We found that little twisted bit of irony out the first time he attempted suicide and refused to sign a release...then he refused to take his antidepressants.  He was released from the hospital and attempted suicide again a few weeks later.  And wound up in a different hospital.   My appointment with Alaina is only a half hour long, but maybe I'll at least be able to learn what exactly she can help me with.  I know for starters I need to get the custodian/guardian...whatever it is...paperwork filled out so we can make legal decisions for Zack.  Including hospitalizing him against his will if necessary.

Well... I am feeling less grief today because I'm looking toward tomorrow with some hope.  I really did like Dr M and I feel some confidence that maybe a new direction is what we need.  I hope I'm not putting too much faith in another stranger....but I don't have much choice.

To Be Continued......

Keeping hope in my heart....