Ten Years Later

Yeah...ten whole years later and I'm finally giving you an update on me, my son K who was diagnosed with undifferentiated schizophrenia, and life after his diagnosis.

Honestly, I stumbled across this blog as I was cleaning up and tidying all of my internet platforms and connections, social media, etc.  I have one divorce, a once successful business that is now falling apart because of Covid, a sweet little house I built two years ago and a whole new take on life.  All of this, in large part, is due to my journey as a mom with a schizophrenic son. 

Life makes no promises. And life takes no short cuts. A "fair" hand is not guaranteed to anyone and no one feels that more acutely than someone with a mental illness. Hospital stays, mental health facilities, poorly funded programs and a dearth of therapy and psychologic services are part of what a mental health patient will face even in the most Democratic states.

I can't tell you how many hours I've been on the phone with K trying to quiet his fears, hoping that what I am telling him is what he needs to hear, hoping that I will be able to get any kind of an audience with his health care professionals to make sure that they're reviewing his needs and his meds and making a connection.

The meds!  They make a HUGE difference to the changes for the better you want to see. And it's not an easy task to find the right cocktail of meds and the correct dosage of meds that will allow for hope of a more normal, less fearful life for your child. 

Stick around.  I've more to tell, more to share, more to gripe about. But let me tell you also, there's hope; hope for you and for your child! And YOU are the best equipped person to find it!

Life in a Board and Care Facility, Chapter 1

So my son K, all of 21 years old with undifferentiated schizophrenia, moved out of his dad's condo in the valley and into his own place at a board and care facility in Santa Monica today.

I'm using the phrase "his own place" very loosely.  He's sharing a room with a friend he met at Daniel's Place several weeks ago.  He has a dresser of his own but no closet space.  They both share a bathroom with another couple of guys so I can't imagine how this place is going to stay neat and clean but I don't care at this point.  I am just celebrating the fact that he's out of his dad's, closer to the services he needs and has opportunities to make friends.

They get fed three meals a day, they have laundry facilities they share with the other residents and their meds are monitored.  K just called.  He just finished his first meal there :  dinner, and he says the food was pretty good, not gross.  After dinner one of the nurses gave him his medications and now he's sitting in his room trying to figure out whether or not they have wi-fi and internet access. He's already found he'll have to buy a three-prong electrical adapter so he can charge his computer and he's not sure where all the other residents, namely his roommate A, have disappeared to after dinner.

Hope...

I truly hope we are at the beginning of a bright new chapter of life for my son.

One of the worker's at Daniel's Place returned my phone call today and left a wonderful message.  My son K has been attending group sessions there, seems to be doing well, and is adjusting well and enjoying the sessions! Yay.

On top of all that, they enjoy him.  It's so nice to hear that he is being appreciated and enjoyed.

I smiled all day!

Board & Care Triumph...for now

The title of this post may seem a bit of a downer at first glance, maybe a bit skeptical.  Sorry about that but whenever something good happens I try not to get TOOOOOO excited because many times a disappointment follows.

Good news: My son K, who has been diagnosed with undifferentiated schizophrenia, interviewed at a board and care facility on Thursday and (drum roll) got ACCEPTED!  It's a board and care facility in Santa Monica across the street from the college K wants to start attending again so the location is great.  It's going to cost $981 a month but that's okay.  We've got to now petition Social Security to increase his benefit to cover the cost of board and care which is possible and doable.


What is a board and care facility?  It is a place of residence for those with disabilities like K where they will monitor medications, provide three square meals a day, provide laundry and common area facilities for residents, and monitor their comings and goings.  So yes, the residents there get to come and go as they please but they are monitored - someone checks on them every day and makes sure they take their medications.


Right now K still needs to have someone monitor his meds - like make sure he actually swallows his pill.  So a board and care facility where someone will monitor his med intake is absolutely necessary.  He takes Risperidone and since he started taking it back in March of this year, we've seen a huge improvement in his behavior (more calm, fewer/no hallucinations).  According to his therapist and doctor his brain is in the process of healing.


If he were to live on his own and not have his meds monitored, he would eventually stop taking his meds (thinking he's okay and doesn't need meds) and very shortly thereafter (within a few days) he would have one of his "episodes" which would possibly require hospitalization.


Within the past year K has been in the hospital nine times.  Six of those visits to the hospital were within a three month period when we were still trying to figure out what was wrong and shortly after his diagnosis.  It was probably the most awful period of my life and his too, I'm sure. 

It totally sucks when you don't know what's wrong with your child and you can see that they are tortured by their own inability to think clearly and they know it too.

It's Been 8 Months Since Initial Diagnosis

My son was diagnosed with undifferentiated schizophrenia in February of this year, 2011, and though it was a shock to have a name like that finally put to his erratic and often scary behavior, it was, at the same time, a relief to at least HAVE a diagnosis.

I thought about starting a blog like this a few weeks after we initially got the diagnosis because I...
1)  Thought there must be other frustrated, scared mom's out there of schizophrenic children that could help and advise a newbie like me.
2)  Needed a place/forum/time to vent!
3)  Misery loves company and I felt miserable that my son would have to learn to live through and endure all the symptoms and management of schizophrenia.

Thank GOD I live in the internet age because without the internet we would never have gotten the kind of help we have for K as quickly as we did.  I was able to read about schizophrenia and look up places, people, organizations and doctors that could help K immediately.

Because of the internet I was able to get K interviewed to be in a treatment and research program at UCLA while he was still in the hospital undergoing one of his "episodes."  Because of the internet I was able to get him services through his county mental health department.  Because of the internet I was able to get him financial aid so that he could have a place to live.  THERE IS NO GREATER TOOL TO HELP YOU THAN THE INTERNET AND YOUR OWN PERSISTENCE.

But there was so much to do back in the beginning and so it's only now that I'm getting my blog going.  I have to say that once my son K started going into the hospital more frequently late last year and earlier this year there was no time to think of a blog much less write one.  It seemed like from the time I got up in the morning (early for me because I live in Hawaii and my son lives in California - a 3 hour different time zone) until the time there were too many people up and around me that I didn't want to bother them or be embarrassed with my constant and sometimes emotional phone calls I was on the phone trying to understand all the STUFF and get some help for my son.

Please, if you have any questions, if you're a mom or caregiver or relative or friend of a person with schizophrenia and I can help, don't hesitate to contact me.

Loving and caring for a person with schizophrenia is doable, SAFE, possible and one of the most rewarding things you can do.