But, Did They Learn Anything

I was asked to speak at the local high school to a Psychology Class.  The teacher is someone I know.  She was my junior high teacher.  We go to the same book club and church.  She asked if I would consider speaking about schizophrenia and what it is like for my son.  I immediately said I would.  So far, one of the only positive things that I can find from my son's illness is that I can try to put a face on mental illness for people.  It was a small class.  My talk was informal.  I printed off pictures of my son and talked about what his childhood was like and how there was a time he was a normal kid.  Smart, athletic, popular, handsome, and funny.  I was given the entire class to speak.  I certainly did not think it would go that long.  The class is 90 minutes.  But, it took up most of the time.  After I talked, students asked some questions.  So, do I think I reached anyone, hard to say.  If one person takes away more compassion for someone with a mental illness, that will be a victory.  If one of those students becomes a lawyer, a counselor, a politician; maybe one day they will face an issue with someone who is mentally ill and remember something from my talk.  I am going to believe there will be several positive changes because I spoke. 
One of the difficult parts of talking about my son is it is story.  There are times I feel like I should not be talking about him behind his back.  Unfortunately, he would not tell the story.  I really believe people have been too secretive about mental illness.  There is a stigma, and shame about it.  Like the person is somehow to blame.  None of that is true.  If we do not talk about the illness, people will never learn.  So, I will tell his story.  I will tell our story.  Because we all live with it.  We all live with what our family should have been, could have been.
Last week I was doing some reading.  I read that researchers now believe schizophrenia could happen invetro.  The mother gets a virus early in the pregnancy.  It lays dormant.  With some people it never appears.  Several factors can cause it to happen.  They also link autism and schizophrenia now.  Interesting stuff.  Waiting for that cure.....

Great Day

Yesterday was just a day in my life.  I worked and went to some basketball games.  Came home, ordered pizza, did some things on the computer.  Just a day.  I enjoy basketball, but not a big deal.
My son attended the games with us.  First he called his sister and asked to ride with her.  I asked him why?  He said her seats are heated and he did not want to be cold.  Love that!  He sits at the game near us, not right next to us.  He watches his nephew with such intensity.  I see him quietly coaching.  Making signals to The Kid.  The Kid who is oblivious that he is being coached by Uncle.  Going to games is huge for Uncle.  There are times he cannot sit around too many people.  There are times he does not have the attention span to sit through a game.  Last night he watched two games.  Every once in a while I saw him make some notes.  Not sure what that was about.  Games were over, we got in the car to go home.  Uncle said, I just love watching The Kid play basketball.  I think he is really good.  I wonder if he sees himself in the way The Kid plays.  I know I do.
We get  home and I let Uncle pick where we would get our pizza.  I also took him some sour patch kids from my shop.  His favorite treat from my shop.  After dinner he asked me to look up some information on his new favorite basketball team the LA Clippers.  I found the page he wanted and gave him the computer.  He discovered he could watch the game live on it.  He watched the rest of the game.  That might not seem like a big deal.  It is a very big deal.  Last year he did not have the patience to sit through a game.  This year he watched a game on the computer.  After the game he got ready for bed.  He came in and said, I had such a great day today.  It can almost make me cry just to write it.
I am not always as patient with him as I should be.  When he wants something, no matter what, it is an emergency.  I need to stay aware of the fact that things that are not important to me can be very, very important to him.
The last two years he was hospitalized around this time.  He has struggled through more than a few bad days this year.  But, he is fighting a good fight.  Trying to find a little piece of happy for him in this world.  I thank God for the days he finds it!!

Thankful

I have not been good at keeping this up.  So much going on right now.  I can cover several days with one big thankful.  I am thankful that it is November and my son is doing well.  This is the season he gets bad.  There have been some episodes where we think, this is it.  Signs that he is going downhill.  He has recognized it a couple of times.  He sees his doctor and has adjustments made.  It is wonderful!!  What that means:

He is present.  He will be in the living room with me at night.  He likes to watch TV.  He will watch entire games.  Baseball, basketball, and football.  He will watch bad reality TV.  We will watch bad reality TV together.

He likes to spend time with the kids.  Right now he and Coco have a thing.  Coco likes everyone to recognize she is here.  Tink does not crave all the attention.  Coco seeks out Uncle.  Love it!  The Kid barely comes around anymore.  Uncle rarely sees him.

Weekly he goes to have his blood drawn.  That is huge.  He does it.  He recognizes in order to get his medications, he has to have his blood drawn.

He will mention his illness.  He does not call it by name.  But.....admitting he has an illness is huge.  He will say he cannot go somewhere because his illness makes him uncomfortable.  I feel like that is such an amazing thing.

This can change any day for no apparent reason.  Today, I am thankful that Uncle is fighting a good fight and winning the battle.

My Son

It Is Mental Illness Awareness Week

 

This is my son.  If you have been reading my blog, you know he has schizophrenia.  It is a terrible way to live.  For a very long time I did not talk about him.  Not because I was ashamed.  Because it makes people uncomfortable.  Now, I talk about him.  He is my son.  I should talk about him.  Schizophrenia is a word that scares people.  Makes them think of a violent person.  He is not violent.  Don't get me wrong, he will lose his temper at me.  But, he is not violent.
He loves his nieces and nephew.  He likes to go outside and do sidewalk chalk with his nieces.  The girls make him smile.  Coco has a big chunk of his heart right now.  They love him despite the fact he is not well.
He loves when there is a party at Tru Stories and he can hang out with Flag Girl's sons.  They will throw the football with him or play bags.  When FG's youngest scored a touchdown two weeks ago Uncle was so excited for him.  Also, bummed it was an Away game.
He loves to watch sports.  His favorite teams are:  White Sox, Bears, and Bulls.  He will watch any games a good team is playing.  He was a natural athlete.  He also worked hard to improve.  Watching him play basketball was so much fun!!
For years he got mostly A's.  It came easy for him.  He had a great memory.  I never had to remind him to do his homework.  He would do it as soon as he got home.  After the illness started he barely graduated from school.  Now he does not have the concentration to read. Since his last hospitalization he finally has enough concentration to follow sports again.  I am thrilled!!  He can sit for hours looking off into space.  I would much rather have him watching TV.
He spends hours writing notes on paper.  Lists of names.  Over and over.  When he was young he kept very elaborate baseball stats.  I often wonder if that is the link to the lists he makes now.  He will not talk about what they mean. 
Most of the time (almost always) he does not admit he has an illness.  I think that is how he copes.  It is heart breaking when he discusses being ill.  Not long ago he asked me if I thought he would have been a good Dad?  That broke my heart.  He has also asked me if I thought anyone would have married him if he was not sick.  Yes, a huge yes.  The girls loved him.  He was a charmer.  (To the girls.)  He was sweet.  When he was in sixth grade he asked me to tell him how to French kiss.  He said he did not want to look stupid. 
Most of the time I cannot think of the good times.  For two reasons.  It breaks my heart.  Number two, there were so many horrific times with him.  He argued.  He had no Impulse Control.  If he thought it, he did it.  He argued with teachers.  He wanted everything in life to be fair.  Ironically, we all know life is not fair. There were detentions, suspensions, in school, out of school.  He was sent to Alternative School by his request.  He worked his way back into the regular high school and was finally expelled.  He graduated from Alternative School.  He could be so rude.  Junior High and High school were nightmares.  We took him to several counselors.  The big problem was, he was so darn smart.  He would say what they wanted to hear.  I can remember one counselor insinuating I was over reacting.  He did drugs.  His behavior was blamed on the drugs.  I ALWAYS knew it was more than drugs.  I knew the drugs were a reaction to whatever he had.  I now know that 60% of mentally ill people self medicate with drugs.  It did not cause the illness.  The illness was inside him when he was born.  That is another reason I did not talk about his illness.  People would ask me if it was caused by doing drugs.  No, no, no.  Drugs do not cause it.  Drugs can make it come out, they can certainly make it worse.
In high school one of his close friends died in a car accident.  He was not in the car but they had all been together and were driving to meet at a house.  After that his life spiraled completely out of control.  I have read that mental illness can appear after a life changing tragedy.  It happened a few weeks before his junior year.  Life was never the same again.  That began the descent into the hell of mental illness.  It was almost three years before his illness was diagnosed.  For 13 years our family has lived with the ups and downs of schizophrenia. 
For Tru Stories it means she lost a sibling.  He does not have many memories of his childhood.  He also has anger towards Tru Stories.  I know that comes from his jealousy.  He can see what he missed in life by watching her and her family.  We did not just lose him.  We lost what should have been.  The sister in law Tru Stories should have had.  We used to joke that he would marry a cheerleader type.  TS and I kept a list of names of girls we thought he would date.  The girls he dated had names that ended with i or y.  They were always adorable.  They were usually smart.  Some holidays I know the family he should have had is missing from our table.  They wife he should have had.  The kids he would have had.  He should have spent hours in his backyard playing catch with his son.  He should have had a little girl that owned his heart.  Every holiday there is a blow up that disrupts our dinner.  I know it is his way of hiding.  He tries not to deal with reality.  Once in a while it hits him in the face.  He reacts poorly and hides.
He used to have quite a few friends.  Now he does not have any.  He is alone at home with us all the time.  He likes to attend High School football games.  He does not last at the game long.  Too many people.  Makes him uncomfortable.  It is a lonely life.
I tell you this not for you to say how great we are for caring for him.  We are his parents.  That is our job.  I want you to have a tiny picture of what a person with mental illness endures.  We take care of him.  We remind him to take his medicine.  We get him to eat when he does not want food.  We do everything we can to keep him stable.  But, we can't.  For no apparent reason, his illness will take control.  We can use all the weapons we have against it and it will still win.  Then he goes to the hospital.  It is horrific.  It is scary.  It breaks our hearts.  He has been hospitalized about six times.  We always wonder if this will be the time he does not come out of his psychosis.  With all our weapons against the illness, we cannot keep it away.  Think about the people on the streets.  There is no help for them.  No money for medicine.  Nobody to make sure they eat or have a safe place to sleep.  Nobody to remind them to take medicine.  My son has been on over 20 pills a day.  How can someone alone on the streets figure out how to get that medicine and keep it straight.  In our State when a mentally ill patient is discharged, if they do not have family to take them, they are dropped off at a homeless shelter in the town they last lived in. 
This is Mental Illness Awareness Week.  I hope I have made you aware of  a few of the challenges these brave people face.

Countdown to Christmas

Two days until Christmas.  I think I am done shopping.  I always have a hard time stopping!!  I love to buy presents.  Things are going well here.  That has added to my Christmas excitement.  My son is happy.  He is doing well.  He is making some positive changes.  He is taking advice from his Case Manager.  He is even keeping a journal.  I bought him extra gifts.  Spoiling him more than I should.  Normally, he is down at Christmas.  I have plans for a great day.  I know he is going to love his gifts.  It has been a good week.
Monday Tru Stories and her brother went shopping.  That is something special.  Joel being kind to his sister is a very good thing.  That makes me so happy.  Don't get me wrong, he is not healed.  He is improved.  More stable than he has been in a long time.  I believe all the prayers and positive thoughts put out in the Universe helped. 
I am also looking forward to the excitement of my grandchildren.  I bought them too much.  That is nothing new.  I am excited about Christmas Eve at Tru Stories' home.  I am looking forward to relaxing during the day on Christmas.  I really enjoy Christmas Dinner.  I like to get out my china.  I light candles.  It is nice having our little family all together around the table. 
For the record, I am not dreaming of a white Christmas.  Having snow is not a deal breaker to me.  I enjoy nice weather on Christmas.  I could handle it being warm enough for a little walk.  I could go all winter without snow.  Sorry children!  It is nice driving to work without the stress of bad weather.
I need to go see if I have enough stocking stuffers.  I am sure I have bought more than can fit in all the stockings.  I usually do!  My kids love the stockings.  I try to find unique things.  Stockings are fun and stress me at the same time. 
I hope all of you are enjoying your Christmas preparations.  Thanks again for all the prayers and support. 

Back To Work

Tomorrow it is back to work all day for me.  I feel strangely nervous about it.  Uncomfortable in an environment I have been in for years.  I have been so uninvolved in my work place that I feel like I do not belong anymore.  I also feel nervous about being away from home all day.  Seriously, I could easily turn into one of those people that never leave home.  Put on my jammies and stay in my house.  It is only one long day, then I have the week-end.  I am sure I will be back into the flow soon.
I know my son will be fine without me home all day.  He just will not do as well.  Hubby is barely more than a recluse himself.  He will not work at getting Joel socialized.  He has his second appointment today at the Human Resource Center.  He and his Case Manager (CM) are setting goals and trying to identify things he needs to improve.  All the way to the appointment he was angry and arguing.  He did not want to go to the appointment.  When we got there he started out grumpy.  One of the first things his CM did was use the term Schizophrenia.  He jumped all over that word.  He likes to say he is Bi-Polar.  The CM danced around that issue with him.  After the shaky start they were able to get things accomplished.  She gave him some specific things to work on before the next appointment. He is suppose to try to do something social once a week.  This can be something as simple as going to spend time with someone.  He set his goal to attend some basketball games.  We accomplished that today.  They also talked about manners and hygiene.  His CM told him he needs to start doing things to stimulate thinking.  He spends too much time alone and one of his only activities is watching TV.  At this point I was ready to tell CM that she could set up goals for Hubby & Uncle.  Some of the suggestions she made were:  play cards, do word search puzzles, jigsaw puzzles, or read.  Tonight The Kid and Uncle are playing War and checkers.  I think we are off to a good start.  I hope to include The Kid as much as possible.
Ultimately, we want to see Uncle in some level of assisted living.  I would love to see him in an apartment the Human Resources supervises.  He would only be twenty minutes from here.  I would like him to establish relationships with other people that are working through Human Resources.  Keep those prayers coming!  Throw some my way for a good day tomorrow.  I have to go all day without a nap!  I'm sure it will be fine.  That was FINE, not fun.

Warm and Cozy

For over 7 weeks my son was away from home.  For months before that, his mental illness was out of control and he had our home in an upheaval.  He spent almost two weeks in the hospital.  He spent exactly 5 weeks in a mental health center.  Today I brought him home.  It is nice to have him back under our roof.  He was happy to get home.  The dog is very happy to see him.  The house feels warm and cozy again.
This is not without stress on my part.  I feel very nervous.  It is like waiting for the other shoe to drop.  Wondering if he is really well enough to be home.  Worrying that he will fall into old habits of staying up all night.  Trying to sleep all day.  Keeping us awake.  Tomorrow he has a follow up appointment regarding support services.  I hope we can convince him this is a good idea.  At least get him to give it a try.
In this moment, I am going to feel relief.  Be thankful that God answered so many prayers.  Grateful that so many people have been praying for my family and giving encouragement.  Right now I am going to let the warmth of happiness wash over me.  Enjoy the moment. 

Visit With Uncle

Today The Kid took the long trip to visit Uncle with me.  It has been a tough decision for Tru Stories whether to let the visit take place.  The deciding factor is that Uncle has been gone a long time.  He is in much better shape than the last time The Kid saw him. 
I like traveling with The Kid.  We like to look for Hawks.  Today we saw 11.  It was more me looking for Hawks today.  The Kid is able to read in the car.  I cannot do that because I get carsick.  He told me he was making good use of his time by reading until it got dark.  The Kid did quite a bit of reading this week-end.  He was able to finish Henry Huggins.  He is not\w well into 39 Clues, Book 3.  The Kid came home with me last night.  We have done quite a bit of reading.
The visit started out great.  As you can see by the picture, Uncle looks good.  He was in good spirits.  He was happy to see The Kid.  He loves his nephew.  He is very protective of his nephew.  As usual, we stopped and picked up McDonald's to take for Uncle.  We also had a bag of snacks.  My son noticed immediately that I had my hair cut.  He complimented me on it.  Those two boys always notice my hair.  Uncle said he had been out in the yard area today.  He got some fresh air and did some running.  That was good to hear.  Two weeks ago, he could hardly walk, let alone run.  Every visit I see improvements.  About 35 minutes into the visit things started going downhill.  Uncle went on one of his rants.  He was not yelling but he was not happy.  I was finally able to get someone on the staff to look for Joel's wallet.  He has been complaining that he could not find it.  When he was at the hospital they kept it locked up.  When he left the hospital they had all his stuff together.  When he got to the other facility the wallet never got checked in.  That means either the driver took it or the person that checked him in took it.  One night I was asking about a sweatshirt I had given him.  A lady said he had given some things away when he first arrived.  I am going to say that makes me lean towards that lady as stealing from him.  Why?  Because no matter how out of his head my son is, he does not give things away.  If a person needed $1 to survive, he would say he did not have a $1.  My son is not a giver.  He would not let someone borrow his clothes.  He would NEVER give someone his clothes.  If he had his wallet, he would not have misplaced it.  I do not think he had very much money in the wallet.  Unfortunately, his license was in there and some personal things that meant something to him.  We will probably have to listen to how his wallet was stolen every visit now!
That made The Kid uneasy.  What really upset him was Uncle started saying he wanted to come home.  He talked about being lonely.  That he misses being home.  He is cold at night.  The room is at the end of a hall and it scares him.  He did not start yelling about wanting me to take him home.  He talked quietly about wanting to come home.  My grandson did not cry.  At one point I saw him turn his head, get tough, turn back and give my son a big smile.  He is a brave and loving kid.  Uncle calmed down before we left.  He gave each of us a hug.  He asked that we start calling him more. 
I asked The Kid if he was sorry he went to visit.  He said he has mixed emotions.  (Seriously, that is exactly what he said.  He does not speak like most 10 year old boys.) He was glad to see Uncle doing so well.  He even told Uncle he looked a million times better than the last time he saw him.  The hard part is knowing Uncle is sad.  That is hard for all of us.  We took the sad walk to the car.  Both of us quietly got in the car.  I said, are you alright.  The Kid said, no.  He was choked up.  I said, it is fine to cry.  He started sobbing.  Not for very long.  We stopped back at McDonalds.  Picked up food for us.  Sat in the parking lot until we were ready to head back home.
We did some in depth talking on the way home.  We also stopped and bought winter green life savers and I showed my grandson how if you crunch them hard sparks fly.  He enjoyed that.  We make good traveling companions.
The Kid decided he needs another night at my house.  He said after his "trauma" he will feel better if he stays here.  He is already curled up in his favorite chair reading.  I am going to do the same thing.  It has been a long day.  I think tomorrow might be a pajama day!

Another Visit

Yesterday, Tru Stories and I went to visit Joel.  Just the two of us.  It was nice to have TS alone in the car for a few hours.  It was not necessarily a fun way to spend the day.  At least I had good company. I do not know why but it is the most exhausting 2 hour and 15 minute trip.  Feels like it lasts forever! 
It was a long visit for Joel.  We sat with him for 1 hour and 30 minutes.  He was much calmer.  Physically he looked better.  He was more alert.  His balance seemed to be better.  His speech is still a problem.  It was a bit clearer than last week.  Not enough that I can really follow his conversations.  I was able to understand more words.  TS thinks she can understand more of what he is saying.  She could have just been making things up for all I know.
If I gave him a 2 last week on a 1-10 scale, I would give him a 3 for yesterday.  It is nice to see any positive change right now.  He is more aware of his surroundings and of himself.  He said he did not want The Kid to see him in there. 
He also asked me to buy him new tennis shoes, Nikes.  This is amazing to me.  He wants to have nice clothes to make sure the other patients know he is cool.  Seriously!  He is in terrible shape, cannot speak, and wants to make sure he is dressing like there is an in-crowd.  He has always been something!  I am happy that he cares.
No expectations for the next visit.  I cannot control any of this.  I can just remind him that I love him.  Try to take him things that make him comfortable. 
The end of the visit was painful.  He was begging for me to take him home.  He was begging his sister.  He said he could not get well in that place.  If I loved him, I would take him home.  It broke my heart.  As painful as it was, the fact he wants out is positive.  Any self-awareness is a good sign.
Day at a time.  Day at a time.

Saturday

Today is usually my relax at home, be a lazy slob day.  I enjoy it.  I am good at it.  Not today.  We are going out to celebrate The Kid's birthday.  I am glad.  I feel stressed and sad today.  I am worried about my son.  I cannot call and talk to him on the phone.  Yesterday when I called the person on duty did not really know Joel.  The call was brief.  I said, how is he doing.  She said, fine.  I said, is his speech clearing up.  She said, no.  To me, that is not fine.  We are working off of different scales.  I can lower my scale.  Not low enough to make his speech fine.
Tomorrow Tru Stories and I are making the long drive to visit Joel.  At this point, I cry thinking about visiting Joel.  The other day, I could not even keep from crying in front of him.  He did not notice.  He has enough of his own issues to contend with.  The other part that is hard is knowing how upsetting this is going to be for TS.  Does not matter how old our kids are, we want to protect them.  I wish she did not have to see her brother like this.  I wish none of us had to see him like this.  I hope that having TS there will help him.  I hope it calms him.  The fact is it does not matter how upsetting it is for us to visit.  All that matters is that our visiting helps him somehow.  Reminds him he is still loved.  Reminds him there is still a world outside that he needs to be a part of. 
There is no getting around, this is going to be a hard week.  The other day when I tried to visit with Joel even with his garbled speech he remembered that Bryson's birthday is coming.  He asked me what they were going to do to celebrate.  That was one of the few things he said that I could understand.  At least piece together a meaning of what he was saying.  Thanksgiving day will be difficult.  It was not a day that Joel always celebrated with us.  It is one thing to know he is downstairs in his bed sleeping the day away.  It is way more upsetting to know he will be in an institution with strangers that day.  I am going to visit him in the morning.  We will make sure he knows we are still thinking of him.
I am struggling with how many people do not understand how terrible this is for my family.  We have family members that have not even called for an update.  There is family that I see that do not even ask me how Joel is doing.  I have people that I was close to that do not seem to care.  I think most of it is due to the nature of mental illness.  If my son was fighting cancer, I do not think people would be so cold.  Course I could be wrong.  Maybe this is how people are.  I have watched a few people that I love die from terrible illnesses.  When I see my son, he looks as bad as the people I lost looked fighting and losing their battles.  When I left the visit the other day, I left with the feeling that what the doctors are doing to help him, could kill him. 
I will still find blessing to count this week.  I am starting a list in my head.  On Thursday, I will remember our family still has blessings.

Doctor Google

I went to visit my son today.  It did not go well.  The drive took 1 hour and 15 minutes.  The visit was about 15 minutes.  Crying in the parking lot another 10 minutes.  Crying all the way home was over two hours.  There are so many terrible things going on right now.
The most terrible part of today is Joel is losing his ability to speak clearly.  I could only understand one out of every ten words of less.  Most of his words sound like gibberish.  Sometimes he moves his mouth and words do not come out.  This problem has been getting progressively worse.  I have a speech pathologist in my family.  I described some of his symptoms to her the other night.  She sent me some information and things to look for on the visit today.  My sister in law and I have a diagnosis of something called Dysarthria.  This can be caused by a reaction to medicine.
Keep in mind I could not understand what my son was trying to say.  He does not realize how garbled his speech is.  I talked to his nurse and social worker.  They act like this speech problem is no big deal.  Here is a quote, "he might have to relearn how to speak."  I heard that statement several times.  Like, no big deal.  If, they ever manage to get the schizophrenia under control, all we have to do is teach him how to speak all over again.  Awesome!  Because his problems do not seem insurmountable as it is.  Now there are terrible side effects from medications.  Joel was frustrated because I could not understand him.  He was also falling asleep while he was sitting next to me.  I did understand him saying he did not feel good.  When he stood up he was swaying.  He had trouble holding onto the magazines I took him.  He is in terrible physical and mental shape.  If he was considered "ill" I could go into his room and sit next to his bed.  He just wanted to be in bed.  I could pull the covers up around him, like Moms like to do when our children are sick.  No matter how old they are.  I could rub his hand and tell him he will get better.  I could tell him the doctors will take good care of him.
That cannot happen.  I do not even know where his doctors come from.  I do not know when they show up to see him.  I heard the psychiatrist is only required to see Joel once a week.  Today I heard there is a medical doctor too.  I asked the social worker to have his doctor call me.  No call yet.  I cannot enter the area where Joel stays.  He has to come and meet me in this public waiting room.  There is no privacy.  Today the area had quite a few people in there.  That did not make Joel comfortable. 
I got home feeling at a loss.  I do not know what to do with all this grief.  When I think of all he was and see him now, I feel broken.  He was so coordinated.  Such a great athlete.  Now he has no balance.  He cannot speak clearly.  He shakes.  I grieve every time I see him.  It feels like I have lost him all over again.  What kind of mother would I be if I did not visit him?  I have to be his advocate.  I have to make sure all his caregivers know there are people out here expecting them to take care of Joel.  After Joel went back into the facility, I was still sitting in the visiting area in shock.  His case worker asked me if I was ok.  No, NO, no.  How can I possibly be ok.  I understand they probably see people in this condition quite often.  I do not.  This is my child.  As I was walking out, she was trying to think of something positive to say to me.  She said, "at least you know he is safe."  I do not know that.  My son has been gone for almost a month.  In many ways he is in worse shape now.  Today I realized I have to put something new on my list to worry about.  He could die from all these terrible medications.  He could die and he would be all alone in there.  I think of it as terrible.  That is not fair.  The people I have talked to seem to care about Joel.  They seem to know what they are doing.  Because I cannot see where he is living, my imagination is not going to a happy place. 
Tonight I spent hours on the internet.  I have a full list of all Joel's medications.  I googled every medication for side effects.  I googled Dysarthria.  I am sure that is what Joel is suffering from.  Luckily, we have a speech pathologist in the family.  If, Joel ever gets back home, we can work on getting his speech back.  One of the dangers right now is from Joel not being able to chew and swallow correctly.  He could aspirate some food and end up with pneumonia. 
Does your head feel like blowing up from all this information?  Mine does.  Tomorrow I am going to try to see my doctor.  Speaking of medications, she might need to get me something to take before I visit Joel.  I know my counselor will give me some words of wisdom on how to cope with the long journey we are on.  Tonight I will try to get some sleep.  Start all over again tomorrow.

That Joy Did Not Last Long

Went to visit Joel yesterday.  He was worse than when we saw him last week.  I do not understand how he could have been so good on Thursday and so bad yesterday.  It was a short visit.  He was completely delusional.  I am very sad.

Some Good News On A Friday

This picture has nothing to do with my post.  I just like it.  Tru Stories and all that hair.  Joel with the dorky pose.  Back in the day when Tru Stories was still bigger than her little brother.
Yesterday my friend and I went to visit my son.  I was dreading the visit.  Walking up to the building I felt sick.  I was pleasantly surprised.  Joel was waiting for us when we got there.  He came out and gave me a big hug.  I could have hugged him all day!  Wish my kids were touchy feely.  I love a good hug.  Shout out to Munchkin and her hugs last week-end!!!  Flag Girl too.  Good people in our lives, real good people.  I digress.  Back to the visit.
It is hard to describe the improvements.  On a scale of 10, 10 being Joel at "his" normal and 1 being how terrible he was when Tru Stories and I saw him on that terrible visit; I am going to give him a 4.  I would have given him a 2 when we saw him on Sunday. 
That 4 is a loooooooong way from where he needs to be.  He is still on restrictions.  No group meetings or outside time.  He is still over medicated.  It was hard for him to stay awake and visit.  His eyes would roll back in his head.  Now for the good stuff.  He sat with us for an hour before we left to pick up some food for him.  When we brought back his food, we stayed another 45 minutes.  That is a HUGE improvement.  He initiated conversation.  Conversation that made sense.  Example:  I wish you would have brought me a newspaper.  I wanted to look at where the NASCAR standings are.  I cannot remember when he said anything that made that much sense.  (I know Coach, NASCAR does not make sense to you.)  He asked my friend how her son was.  He only got angry one time and it was quick and minor.  He was self aware.  He mentioned that he can barely stand up because he is dizzy.  He mentioned he does not want to talk because he is hard to understand.  There were times he did not talk, just sat there.  But, he was comfortable sitting.  He did not appear manic at all.  It is a good start.
The doctor is trying to find a good balance of medications.  He was over-sedated from the hospital.  Some of that medication has been stopped.  Some of it has been cut back.  If they can get his mania under control, he does not have to be sedated.  Now they just need to find the right combination of drugs to give him control of his mind back. 
I feel better.  I feel like this could happen.  I have more than a mustard seed of hope.  I would rather when he gets well we could put him in a group home near our home.  That does not exist.  It would be nice for him to have space away from us.  It would be great for us.  But, I will gladly bring him back home if he is leveled out.  The social worker mentioned, again, that she can place him in a homeless shelter if that is needed.  No thanks!!  We will figure out how to take care of him.
If I dare to dream, I will hope this new doctor finds medication to make him more functional than before.  But, I will be satisfied with him coming home calm and safe.  Able to live at home without completely disrupting our lives.
I hope to make it for another visit this week-end.  I will feel good as long as he does not regress.  I can live with steady improvement.  It would be great if he stayed where he was until just before Christmas.  Give us time to regroup.  Recover from the last year of stress.  I do want him home for the holidays.
Thanks again for all your encouragement, compassion, love, and prayers.  You have helped me in what has easily been the most difficult time I have ever gone through and continue to go through.  On days I felt low, I would receive a heart warming message from someone.  We know good people.  We know good people who know good people.  We have even received encouragement from strangers.  Every word has helped my family.  Thank you!!!!

This Feels Never Ending

Everyday I am haunted by the fact my son is somewhere I cannot reach him or help him.  Physically, emotionally, and geographically.  I never know if calling him is going to be a good thing or a bad thing.  The calls never end well.  I am able to call and talk to the nursing staff.  It does not feel like I am doing enough.  Today I called Joel.  I have not talked with him since Sunday.  It was a short call.  Under two minutes.  That short conversation was able to hit me right in my heart.  I feel like I am doubled over from the agony.  It was hard to understand him again.  He was whispering because he does not have privacy.  The little bit I heard was, I hate it here.  It is so terrible.  Please come and get me, please, please, please.  I said I can't.  That it was out of my hands.  He asked how long he would be there.  I had to lie.  I said 30 days.  It was hard to say that.  He hung up on me.
It is so terrible.  He is in a place, filled with people he does not know.  He has no privacy.  He is over-medicated and does not feel good.  He is afraid someone will hurt him.  He is afraid his things have been stolen.  How can this environment heal anyone?  How can we be sending billions of dollars to help other countries when we are treating Americans so terribly.  My son has insurance.  He is on my policy.  I am not asking you to pay his bills.  This is not about money.  I promise you, I would gladly spend every dime we have to help my son.  This is about not having resources available to help the mentally ill.
Do not say to me at least your son is still living.  He is in hell right now.  Do not tell me God will not give me more than I can handle.  I will say I think I have reached the part where I cannot handle anymore.  The biggest issue is I am the MOM.  It is my job to keep my children safe.  Even if they are adults.  I think I have failed somehow in this mess.  I have done the best I could but it is falling way short.  I do not think my son is safe. 
I have always wondered how my son could handle all that he has lost.  I have heard him cry because all his friends turned their backs on him.  I have heard him cry from being lonely.  I have never heard him say he could not do it anymore.  I have never heard him say he did not want to live like this anymore.  That gave me comfort.  I knew somewhere he still found joy.  If he ever gets out of the hell he is living right now, I am afraid he will not be able to find the will to keep going.  After seeing the best we can offer him for assistance, I cannot imagine how he will ever find joy and comfort again.
I wish I could tell myself he is where he needs to be right now.  I wish I could just let the experts do their job and hope for the best.  Unfortunately, I cannot.  I will continue to call him.  Even knowing every call rips my heart right up.  I will visit as much as I can.  Knowing the visits will not be pleasant and probably not make him or I feel any better.  I am sending him cards.  I have to believe that even if nothing else is helping him, my love can get through to him.  If I do not have that to hold onto, I am not sure how I will survive this.
Tomorrow my friend is making the journey with me to visit my son.  I hope something I do tomorrow can remind my son how much he is loved.  I wish he knew how many people are praying for him, thinking about him.  I wish the love would start healing him.  I want him to be able to come home again.  I want him to at the very least be able to live where he is safe and loved. 
I want to see some light at the end of this long, sad tunnel.

What Does Schizophrenia Look Like

There was not a time in my son's life that he was an easy child.  He brought us joy.  He completed our family.  I can remember when he was born and I had a little girl and baby boy I thought we were perfect.  It was exactly what I wanted.  Both my children were beautiful, intelligent, with unique and interesting personalities. 
When Joel was a baby he had colic.  It was right at supper time.  The doctor gave me drops for it.  (Who knew I would sit and wonder years later if those drops brought on the schizophrenia.)  He was an active child.  Not hyper, busy.  Very different from his sister and her very quiet personality.  Tru Stories and I would go to bed early at night and each read books. I remember the first night I discovered pop and Joel were not a good combination.  I dozed on his floor until the wee hours of the morning while he played and played.
 Joel had such an imagination.  We had a friend that called him Calvin (from Calvin & Hobbs).  He loved to be Super Man.  He lived in his Super Man pajamas for several years.  He broke lenses out of his sunglasses to be Clark Kent.  He was also He Man and my favorite, Battlecat.  I loved him as Battlecat.  He had a belt from his robe that we tied on the belt loop of his jeans.  That was his tail.  He would not speak, only growl.  Like a tiger he was very quiet.  He would stalk his prey.  Quietly, sneak up.  Shocking to be reading or watching TV and suddenly realize our ankles were being licked by my son.  This did not AMUSE his sister.  When he was Battlecat, he would not use his hands to eat.  He would lick at his food.  Once again, his big sister was not amused.  He was a child that helped coin the phrase, Pick Your Battles.  Several nights his dinner was served under the table so he could eat like an animal.  I look back and wonder was that schizophrenia? 
He made wonderful engine noises, animal noises, and gun sounds.  He watched Indiana Jones hundreds of times.  He created his own outfits.  He found an old hat, he wore his winter boots, winter coat, and tied a jump rope around his waist.  He would throw the jump rope on the floor and pretend to climb it.  My job was to sing the music to Indiana Jones in the background and tie him to see how quickly he could escape.
One beautiful Spring Day I was sitting on the porch waiting for my children to come home from school.  I saw a very determined Tru Stories marching down the street.  From a distance I could tell she was not happy.  She was not even in our yard when she started yelling about her disgusting brother.  He was carrying a dead squirrel home.  I could see him coming down the street, dead squirrel by the the tail.  I yelled at him to drop it.  He did and was not happy about it.  Picture Tru Stories in the background of this story.  Very dramatic.  Body language, sighing, her life was ruined.  I asked what he was doing with the squirrel.  He said, taking it to show & tell.  It was Friday.  I said we can't keep the dead squirrel all week-end.  He said, we can freeze it.  I had to explain germs, dead animals, maggots.  It would have been an interesting item to take for show & tell.  It never happened. 
He was my loving child.  He could never get enough hugs and cuddles.  He wanted to stay his Mommy's boy forever.  He was scared of the dark.  He had so many sleep issues.  When he got older he knew where every item in his room belonged.  He could tell if anything had been moved.  He had all his clothes color coordinated in his drawers.  He had a bed time ritual that could not be deviated from.  He believed if anything was not completed in the correct order and time that he had established, his sleep (and ours) would be ruined for the night. 
In junior high he started what we referred to as, shower, bath, shower.  He liked to soak in his tub.  He did not like to soak in his dirt.  He would shower and get clean.  Soak and relax in the tub.  Shower off any dirt that could have found its way back onto his body during the bath.  He had to have his own bar of soap.  He kept it in a travel container. 
Was that part of his unique character traits or schizophrenia waiting to come out in the open?  I do not have the answers.  We enjoyed his quirks.  Along with the quirks came many delights.  He was a great athlete.  He was intense (too intense).  He got good grades.  He got his homework done as soon as he got home.  He did not have to be reminded. 
He loved fast rides.  He and his Dad could spend all day riding roller coasters and did one day.  When he was little he had two expressions he loved to use:  let's do it again and watch me.  We did watch him.  We watched him play baseball, basketball, football, and soccer.  When he got his first outdoor basketball hoop   His fingers were cracked with big splits in the skin from playing outside in the cold.  He would practice, practice, practice.  He loved his Dad to play catch in the summer and toss a football in the fall. 
By the time he was in 4th grade he was already charming the ladies.   He was nice to them.  He spent hours talking on the phone to many different girls.  He was so cute.  He always looked just right when he left the house.  He was able to warm up for basketball games and discretely flirt with the cheerleaders while he did it. 
There was a dark side too.  He wanted everything fair.  If he liked a teacher, things were great.  If he did not like a teacher, he made everyone miserable.  He served many detentions and suspensions.  I was always waiting for a call from the school about something.  He had a temper.  He was not patient.
He was an over confident, living life on the edge boy. 
I thought he would grow up to be a lawyer.  He loved to argue.  I knew he would marry a cheerleader.  His sister and I kept a list of girl names that we knew he would date.  He liked the Mandy, Brandi, Lexi kind of names. 
I would not have been surprised if we would have lost him in a car accident.  He was careless.  Drove to fast.  I never saw schizophrenia coming until it was too late.  I read quite a bit about schizophrenia.  Trying to figure out if there was something we could have done to prevent it.  Wondering if I did something while I was pregnant to cause it.  There is nothing to blame.  Many unknowns. 
He was a high school kid having the time of his life.  Then we started losing him to a black hole.  It took a few years to know exactly what we were up against.  It took us several more years to really believe it.  Learn how to live with it. 
This is what schizophrenia looks like.

Update on Uncle

Since I have brought all of you in on my son's illness, I feel like I should do some regular updates.  Yesterday my Hubby, Tru Stories, and I made the long drive down to visit my son in his new location.  He is in a state mental health facility.  It is hard to feel comfortable about the facility because we were not allowed to go into the living area.  We had to visit in a small waiting area.  It appears there are quite a few people in the "cottage" he is staying in.  There also seemed to be quite a few people working inside. 
The drive is two hours.  The risk is we could get all the way there and only get to see him for 5 minutes.  We are never going to know how he will react to the visit.  Our visit did last almost an hour.  That is the longest visit we have had with him since he was hospitalized two weeks ago.  His anger is very hard to deal with.  He still does not understand that he needs help.  He thinks he is fine the way he is.  One of the big issues we had with him is he was always rummaging through drawers, closets, etc. and taking things apart, breaking things, tearing things up.  It is not because he is just being destructive.  In his mind he is making things.  He is still trying to do that.  There is not as much for him to get into in his room so he has already broken a soap dispenser.  I am not sure this behavior can be modified until his medications are working.  That said, I do not want him back at home until that behavior stops. 
There are some improvements.  He did know who we were.  He did talk to us.  Physically, he looks much better.  He finally signed a release so that I can talk to staff about him.  Today I will call and see what the plan is for taking care of him.  Medication changes are not something he will discuss.
The positive side is none of us cried after the visit.  Either we are getting better at this or there are improvements.

Real Life

Tomorrow I go back to the "Real World."  Back to work.  Only half days.  I am being eased back into life.  It is going to be hard for me.  Somehow I feel like I need to be home.  It makes me feel safe when everything around me is out of my control.  If things become too scary, I have grand kids near  me for hugs.  My brother's house to go visit them and their I feel like what if Joel calls and I am not here.  I know it makes no sense.  Most of the time he calls my cell phone.  I will be closer to him at work.  But visiting hours are at night so I cannot see him.  I talked to him tonight.  He really did sound good.  He did not yell.  He did not say hateful things.  He is still supposed to be sent to long-term care.  We talked about that without him losing his temper.  I hope he is in at least another month.  I want to know he is completely stable!!  I would also like to be closer to getting him in a group home.  It would be great if he could go straight from long-term care to a group home.  I am not sure that will happen. 
How many e-mails do you think I will have when I get back to work?  I am going to guess, 700.

Dreary Mood To Match A Dreary Day

Today has been my saddest day since all of this started with Joel.  I just feel broken.  I have spent the last seven hours crying, crying, and more crying.  I made the decision to not go visit him today.  I called and talked to his day nurse.  After I left last night they had a hard time getting Joel to calm down.  I needed to see him today.  I decided it was not the best thing for him. 
It is so difficult to not have him here.  We have spent so many years taking care of him.  Not being able to help him is over-whelming me with sadness.  I seriously cannot believe we have lost him like this.  As bad as it was having him ill, he was happy.  He had his little world.  He would get angry once in awhile.  For the most part he was fine with his life. 
Right now in order to control him he has to be so over-medicated.  All the medication makes him feel so terrible.  His words are slurred.  He does not like the feelings and fights the medication.  Not just taking it but allowing it to work.  He does not want it to relax him.  I am not sure how someone can heal in that cold, sterile environment. 
He called me tonight.  He was crying that he is never going to be let out.  How can a heart that is broken in so many pieces feel more broken?  There is a tiny glimmer of hope in that call.  I think I am just searching for any signs of hope.  For a moment he seemed just a little more clear. 
I am going to call his nurse later tonight to find out how the rest of his evening went.  At this point I do not even know what a good report would sound like. 

Saturday Blues

I went to see my son today.  Well, technically, yesterday now.  I have not seen him since he went in the hospital last Sunday.  He calls once in awhile.  Mainly to complain.  Only to complain.  Quick calls.  He ends up hanging up on me every call.  I talk to his nurses once or twice a day.  I have not been to visit because he is so agitated.  Normally, it is not worth visiting him in the hospital until he settles down.  He has not settled down yet.  I do not know if he is going to this time.
I decided to go see him hoping a visit would help him remember who he really is.  This is going to be his longest stay in the hospital.  I know he is losing track of time.  For some reason, he can't even have a calendar.  I do not understand some of what they do.  It was not a good visit.  When I got there he was talking quietly in his room with another patient.  I thought that was a positive sign.  He was calm.  He seemed happy to see me for about 2 minutes.  I might be exaggerating that part.  Might have been a shorter amount of time.  One of his complaints was that he cannot see.  His eyes are blurred.  He said it is from the medication.  I said it is probably from the medication drying out his eyes.  He needs to take out his contacts.  I dropped off his glasses when I was at the hospital for what should have been his hearing on Thursday.  He will not use his glasses.  He was also complaining about not having a hairbrush.  I realized when I got home that I sent his brush on Thursday too.  Not sure why they have not given it to him.
The visit took a big dive when the nurse came in with his medicine.  He got upset and aggressive.  He wanted the nurse to listen to his complaints and she would not.  Here is the problem.  He is rude, angry, and aggressive.  He is not winning any favors from the nursing staff.  They do not want to have anything to do with him.  On one hand I get it.  On the other hand, if he were in his right mind he would not be at the hospital.  It is their job to take care of the patients. 
The visiting hours are very short.  They are from 5:00-7:00 every evening.  No earlier times even on the week-end.  It would be nice if they gave the patients their medications before 5:00.  Would be nice to help them calm down before visits.  Dinner comes about 5:30.  IF, I would have made it that long, he would have asked me to leave when his dinner arrived. 
I drove 2 hours for a ten minute visit.  I walked out crying.  When I got to the elevator there was a young guy in there.  He was on the phone to his mother in law.  His wife was the patient that was in Joel's room when I arrived.  He got a shorter visit than I did.  His wife asked him to leave.  When he got off the phone he asked if he could give me a hug.  He was crying too.  He said I looked like I needed a hug and he knew he did.  We walked together to the atrium.  This was the positive part of my visit.  That stranger needed me to be there.  I did not get his name.  I know we work at the same company.  I know he is in systems.  He has three children ten and under.  His wife is suffering from mania.  She was just hospitalized on Saturday morning.  They think she is having a bad reaction to some anti-anxiety medication.  I stopped crying.  I explained to this man that his wife is not really mad at him.  He is just getting the blame for her being in the hospital.  I told him to remember she was safe now.  She had gone missing Friday night.  Lost in a corn field.  Did not get home until it became light out.  I explained to him that normally when a person enters the hospital they are able to straighten out the medication problems quickly.  He said he did not understand everything that was happening.  It was too much.  His kids wanted their Mom.  They were scared by her behavior leading up to the hospitalization.  I told him that normally it only takes a few days to get people well enough to go home.  That it would happen quickly.  I told him she would forgive him.  That I knew it was hard to find people to talk with about what he was going through.  He felt better when I walked away.  I know I was meant to be there for him.  I hope I never see him there again.  I hope his wife gets home soon and can be his wife and a Mom.
As for my son, he is not getting well.  I fear this time he is not going to pull out of it.  I told the nurse that is not who he is.  I heard Joel tell her that maybe she should find a new career.  That people who become nurses do it because they care about people.  He said she is not good at it.  I think she just sees mentally ill people so much she forgets they are people.  The illness is taking away who they are. I want her to know he is a son, a brother, a sweet Uncle that loves his nephew and nieces.  I know that person is still in there.  Praying we are able to find him soon.

Not Much Sanity in The Laws

Our state has laws to protect the mentally ill.  I understand the laws.  I understand why they were created.  They just do not always work to help the patient that needs help.  In order for a person to be hospitalized for mental illness they must be a harm to themself or others.  Depending on who is in charge this is a very broad law.  I think that a person that is mentally ill and stops taking their medication is harming themself.  The people that make the decision (usually a crisis team) does not agree.  I think if a person stops eating that is harming themselves.  Unfortunately, the patient has to be completely out of control to get admitted to the hospital.  We accomplished step one the other day.
Once in the hospital insurance can come into play.  The patient is usually in for 3 days against their will.  Normally, the hospital can find reasons to keep them longer.  (If, they have insurance.)  In order to go longer than 7-10 days, against the patients will, there has to be a hearing.
This is what we faced this morning.  This is a legal hearing held in the hospital.  The State's Attorney requests a 90 day committal.  The patient gets a Public Defender.  Witnesses are the Dr., nurses, and relatives.  I received a 6:00 am call from Joel.  He was calm,  Asked for a coat for his move to long term care.  Big relief!  He was going to go calmly.  Enter the Public Defender.......  He explained to Joel that he has rights.  One is the right to ask for a jury trial.  One is to call for a second opinion.  He can also agree to go without a hearing.  That is what we all hoped would happen.  The Public Defender explained to Joel (in private), that the State's Attorney was asking for 90 days.  I am going to guess he did not explain to Joel that in our State that was not going to happen due to too many people needing care and too few beds for their care.  At this point most people only get 30 days.  All Joel heard was 90 days.  In a completely delusional, over-medicated state of mind, Joel decided his best choice was a second opinion.  He thought this would get him released until next week.  His Public Defender must not have done a good enough job explaining that part of the plan to Joel.
Hearing postponed until next Thursday morning.  Joel will have his second opinion.  I have already received two very angry calls from him today.  One before we made it to our car leaving the hospital.  We did not see Joel because it was not visiting hours.  We have no plans for a visit until he calms down.  No reason to put ourselves through the heartache.  I really do not care what hospital he is in as long as he is being treated in a hospital.  Unfortunately, I think his Dr. was being casual about his care to ensure he was not calm before the hearing.  He finally started a new medication yesterday.  I would really like to see some aggressive care.  Obviously, what has been happening is not working.
At least we have another week, of the calm and quiet in our home.