Saturday, October 31, 2015

Welcome To The Jungle, Thomas

(picture credit: lakeviewhealth.com)


Thomas will be going to his first
illegal drugs and alcohol party
tonight.

There. I said it.

Obviously, if you know me, which some of you do pretty well by now, you know that the prospect of Thomas going to a party is not sitting well with me. I think, as parents, especially parents (and caregivers) of someone with schizophrenia, we worry when our loved ones are anywhere near the very thing that could cause psychosis, cause a major crisis, and find us sitting in the E.R. at 1 a.m. saying prayers for the safe recovery of our loved one. So, I know I'm not alone in this.

With that said, let me fill you in on what's been going on with all of this.

First and foremost, for years, Thomas has wanted to go to parties. I think he might have been to one as a teen but I know that there were no drugs or alcohol there. His friends in high school were goofy, kind of nerdy types who favored video games and strategy card games over pretty much everything else. As each Halloween came and went, there was always some reason why he couldn't get out on this night and have some fun. The last 2 years it's been because he's had to work. So, when he came to me yesterday and showed me a text from a friend from high school that I don't know inviting him to a party, I was immediately hit with questions of what to do next. I asked the requisite questions like:

Who is this kid?
Where will the party be?
and
Can I have a look at his Facebook page?

That last question is the one that our parents could never ask us. There was no Facebook back then. Our parents sent us out into the world with people they didn't know and I'm fairly sure they just prayed we'd come back safe. But in this day and age, the age of cavalierly putting your personal life out there for all the world to see, as a parent, we are in a unique situation. We get the information that, maybe, we wished we didn't have. As it stood, Thomas pulled up this kid's Facebook page and just two hours prior to my viewing his page, he had posted a status update complete with a picture with the comment that he was making candy corn jello shots with vodka and he was trying to perfect it for everyone coming to the party.

There it was. In black and white. The thing that I hoped wouldn't be going on at this party, was being advertised right there and now I had to decide what to do with that information. Let's think about this, though. 

Thomas turns 21 tomorrow.
He's an adult.
He's a good kid.
He cares what his dad and I think about him and what he does.
He wants to please us. 
But he also is very prone to wanting to please his friends too, to the point that he'll give up what he wants to do or think in order to make his friends happy.

That last point obviously being a recipe for disaster at a party with drugs and alcohol.

As you can see, I have reason to worry.

Then there is the fact that he has schizophrenia. For a moments let's forget about the price he would pay by mixing drugs and/or alcohol with his meds. We all know what the end result of that is. What concerns me more is his cognitive abilities (or lack thereof), his inability to reason, his inability to think through a given problem and solve it, his immaturity and so much more. Cognitive skills are the building blocks that are very much needed to navigate a party with friends, peer pressure, and drugs and alcohol.

But he is almost 21, he is an adult, he deserves a chance to spread his wings and fly a short distance from the nest and test his own ability to make the right decisions, and he deserves to have some fun on Halloween night with a few friends.

How can I stand in the way of that?

So, last night, after a long day for me, after my own emotional breakdown because of stress, I handed everything over to Dan.

The calm, logical, strong, voice of reason.

All of which I found myself sorely lacking.

He and I talked and I told him my concerns and I turned it over to him to speak to Thomas about the responsibility he was facing by going to this party. He told Thomas that he felt he should go to the party, he said that he should have some fun, he said that it would be a worthwhile experience for Thomas and he made Thomas promise to call if he got scared and needed a ride home or if he did end up drinking or taking something or if there are no designated drivers to bring him home. Dan gave him sage advice and...

He gave him his freedom.

So, I'm tired. I'm fighting my own form of serious mental illness--a heavy depression, a crash after a mixed episode--and I am not equipped to make a well-informed judgement call on this whole party thing. The possibilities swirl through my mind as I type this. I have laid them all out here for you to consider. All I have left, all I can muster from my dark, oppressive cave of depression, is ardent prayers for my beloved son who lives with schizophrenia and is about to walk into the belly of the beast.



Friday, October 30, 2015

Another Day, More Questions

(picture credit: linkedin.com)


Today I am not going to be a font of information about Medicaid because yesterday was my day to go to personal therapy and on those days, I am generally completely useless to do anything else but process the session. Today, however, I will be diving into it some more to see what awaits Thomas and I.

As I said yesterday, Thomas's biological father has been working closely with me to try to get Thomas on "TRICARE For Life", something offered to military dependent family members with a permanent disability. It seems, however, that isn't going to go through for a myriad of reasons, some of which I don't want to write about here for legal reasons. I did ask my ex, though, if there was any way we could "throw ourselves on the mercy of the court" and plead our case for Thomas without having to go through some of the requirements for approval for TRICARE For Life. Sadly, the answer came back that it was at the discretion of the United States Marine Corps to decide individual needs for this type of care. So, somewhere in my mind, I picture a bunch of highfalutin, dressed in their "dress blues" uniforms, men pouring over Thomas's case and pondering whether or not to approve it. I doubt that's how it works but it paints quite a picture.

What my ex did send me, however, was information on a policy extension by TRICARE called "TRICARE Young Adult" which is a policy that a young adult can purchase for a monthly premium that will extend current coverage until age 26. I like the sound of that...keeping his current coverage, that is. At any rate, the monthly cost of the policy Thomas would qualify for is $180/month which in the scheme of things isn't too bad but would cut into Thomas's SSI payment (that just dropped to $515/mo.) quite a bit making it even harder for Thomas to financially reach the independence he so desperately wants right now. Unfortunately, as his mom, I'm placing good mental health care and coverage far above any prospect of Thomas moving out. He's suffering from fluctuating symptoms lately and I'm not particularly excited about booting him out of the nest at the moment.

As for the TRICARE Young Adult policy, that is something that I will need to research further today because when I scanned over the information yesterday there were a few things that caught my eye and make me question if this policy is going to work. There was some mention of Medicaid which left me with the impression that Thomas couldn't purchase this policy because he's already on Medicaid but I could be, and I hope I am, wrong about that. The other thing that caught my eye was something about a discount on the premium depending on the purchaser's financial status. Well, if that's the case, Thomas would more than qualify since he literally has $25 in his personal checking account and his SSI was just cut back quite a bit and there are some medical/dental bills still yet to be paid. He, also, only works one day a week for an average of 4 hours in a shift so he doesn't have a lot of earning potential either.

Apart from the TRICARE Young Adult research that I want to do today, I also want to call Idaho Health and Welfare which has some hand in Medicaid and I want to call Medicaid itself, if need be, for more answers. There is so much to worry about as Thomas's TRICARE drops off on Sunday. During my recent research on Medicaid for Idaho, I did a provider search looking, hopefully, for Dr. N. (Thomas's psychiatrist that manages his meds) to be on the list and lo' and behold, of course he's not on the list of participating providers so already Thomas is going to have to say goodbye to Dr. N. who has done a wonderful job managing Thomas's meds. This will be a hard loss for Thomas emotionally and it'll be hard for me because of what I know that waits in the wings once we lose Dr. N.

In doing my provider search, I discovered that there are very few people in our area that do take Medicaid one of which is affiliated with the local hospital and psych ward and Dr. K. and my own therapist informed me that they are COMPLETELY UNRELIABLE and will call and cancel appointments at the last minute, that the office has a revolving door through which old providers run screaming out of because the management is so terrible and then unsuspecting new med managers come in until they, of course, run screaming out of there too. Oh yes, and there is a waiting list which makes me wonder how Thomas will get his clozaril approved each month while we wait for a provider to become available. None of this gives me much hope for finding the level of care I am used to for Thomas.

That little bit of information and the accompanying hard truth it reveals is enough to make me want to hide under my covers and not engage in life. Alas, there is no hiding from any of this, no matter how much I wish I could. Thomas's mental health, and more importantly his stability, is at stake here and weighing that against pulling the blankets over my head and ignoring the truth is no contest. My boy deserves every ounce of resolve I can muster for him.

There is no hiding from schizophrenia.

And there is no way I am going to abandon Thomas.


Thursday, October 29, 2015

My Fire Is Back. My Fight, My Tenacity, Is For Thomas.

The Wasteland--Medicaid
(picture credit: bungie.net)


Okay, I'm back and I'M ON FIRE! I saw this day coming and made the conscious choice over and over not to face it because, to be honest, at the time, it wasn't directly affecting Thomas and I but the thing is, it's here now and I am putting on my armor, sharpening my sword and getting on my beautiful black stallion ready to fight the good fight.

This fight won't just be for Thomas and for me but it'll be for all of you out there that are in the exact same or similar situations. My entire reason, MY PURPOSE for starting this blog in the first place a few years ago is back now and I have over 7,000 followers and I am going to include every last one of you in any way you want to be included.

Here is what we're facing:

The day is fast approaching that Thomas will be dropped from his FABULOUS (at least that has been our experience) health insurance, TRICARE. For those of you who are not familiar with it, it is a U.S. Federal Government insurance supplied to military members and their dependents. Thomas's biological father is a retired Marine and despite a contentious divorce and despite the fact that neither of us are each other's greatest fans, he has graciously kept Thomas on his insurance past Thomas reaching legal adulthood at 18. The problem now, though, is that on Sunday, Thomas will be 21 (we will celebrate that milestone here on the blog on Sunday, November 1st) and TRICARE is dropping Thomas. By law, because Thomas isn't pursuing a college education, they don't have to cover him anymore. However, there is a caveat to that rule in the form of a possible consideration by them to continue to insure Thomas into perpetuity because he is deemed disabled and is on SSI (Supplemental Security Income--A.K.A. "Disability"). This is, however, totally in their ball park to approve or deny and it appears that after both my ex and my attempts to get them to continue to cover Thomas, they won't be making the concession to cover Thomas beyond his 21st birthday.

So, because we held out hope that Thomas had a good enough case and we had a good enough argument for them to keep him insured, I didn't fully look into the truth behind Medicaid and what it covers--and more importantly what it DOESN'T cover--when it comes to mental health care. It wasn't the wisest choice on my part to put it off but I really thought TRICARE  would come through for us since they have seen years of records from Thomas's treatment and seen the gravity of what he faces with this cruel illness.

Yesterday, I finally gave up hope on Thomas being covered by TRICARE. There's a minute chance that they'll still cover him but it is oh so small.

It is time for me to say goodbye and it is time to move on to not-so-greener pastures, those that are the wasteland that is Medicaid.

I, first, began with looking up what medications they cover. My worst fear about losing TRICARE has been losing coverage for Thomas's Latuda because it is a new medication and it is EXPENSIVE and I thought that there was no chance that they'd cover it. Through my research, I discovered, happily, that I was VERY wrong about that. Not only do they cover it but they cover all of Thomas's most crucial medications. The one unknown, however, and it's just more research to be done on my part, is:

HOW MUCH OF IT DO THEY COVER?

We could be looking at serious co-pays and that has ramifications that I will get into in another post to be written soon.

I told you I'm back here and I'm on fire and I'm not kidding. Thomas and I are starting a journey that many of you are already on and perhaps some of you are just now embarking on like us, or you face this issue soon yourselves. Nobody will be alone in this, at least as much as I can control by giving voice to these issues that I will be talking about from this point forward. I have spent days, recently, feeling helpless, defeated, depressed, angry and DEAD TIRED as I have anticipated what was looming with Medicaid and the loss of TRICARE and so help me God, I am going to do my best to make sure that as many of you as I can, will no longer feel alone in this process and this fight.

Thomas and I are facing a harsh reality now, with the loss of TRICARE, and the journey we take, we will take you with us. I will post about this a lot, I'll be writing, again, more often, and as I educate myself on all things Medicaid, I will share that with you and hopefully help you sort through any similar messes to ours that you face.

I have felt INCREDIBLY ALONE for months now, caught in grief over the losses I see in Thomas, caught in the glaring reality about schizophrenia and some of my "alone feeling" has been self-imposed because I just didn't have the strength anymore to fight. But, true to form for me, I am never down for long, not much in life has ever totally brought me down, and therefore I'm back on my feet and I'm ready to fight the good fight.

For Thomas--most especially.

For me.

And for all of you.

Monday, October 05, 2015

The Lost Sunset

(Photo Credit: Melanie Jimenez, Lincoln City, OR)


Our family just got back from a much needed vacation at the ocean. We went to Lincoln City, Oregon and stayed in a beautiful waterfront condo. Every night we saw something like what is pictured above. There wasn't a bad night for enjoying the majesty of the sunset and we were even treated to a "moonset" after the Super Moon and eclipse. Dan and I stood outside on the deck every night, except for one, to see the sunset.

In stark contrast to mine and Dan's nights on the deck was the night we left to go play at the casino and saw, as we drove, that the sunset that night was going to be spectacular. I really wanted Thomas to go out and watch it and I texted him right away and told him to go outside and watch it, be mindful the entire time, and soak in it's beauty and majesty. He responded that he would.

That happened towards the end of the trip and I did it for a reason (or really for multiple reasons). For our entire vacation, Thomas was planted at the end of the couch, headphones on, glued to his computer. He perused Facebook, watched YouTube videos and missed just about everything that's great about being on vacation. Yes, he is young, and yes, "this is what kids do these days", but I couldn't help but feel sadness for him and all that he was missing.

Usually when we go to the beach he can be found, at least once, down on the beach tossing popcorn into the wind for the seagulls in flight or I can get him down to the beach for a walk.

That never happened.

When I could get him to engage in family life, he was....

vacant...

disconnected...

searching for words to complete a conversation.

One night I took him with me to the store because he wanted to buy a notebook and mechanical pencil so that he could write a story. He had spent the better part of the day prior to that with his brown furrowed and looking stressed out and when I finally discovered what was wrong, he said he was feeling stressed because he wanted to write a story but he didn't know what to write about. On our drive, though, it became evident to me how much of my boy I had lost in the last few years. He was happy to be in the car, just him and I, and that fact made me happy, but as we drove along, he talked a little here and there, his voice faltering, his vocabulary stunted, and his sentences incomplete. I rode beside him silently listening and I felt a certain kind of sadness wash over me. What had happened to my once vibrant young man? When was it that he had lost his ability to carry on an extended, relatively coherent, conversation?

I rode back to the condo with him with a heavy heart and I felt a deep love and an even deeper sadness for my lost boy.

Later on, my mom pulled me aside, in tears, and told me how sad she was about Thomas. She had seen all of the changes I had and after spending a few days with him on the trip she realized how far into himself he had disappeared. She pulled me aside into her bedroom, in tears, and she said,

"I can hardly stand to be around him. I think to myself that I am only around him every now and then but you have to see him all the time. I don't know how you do it. I don't know how you handle the grief about what has been lost."

The truth was, I haven't spent that much time around him lately. Just like my mom, I was surprised by the losses. I realized that while he and I live in the same house, I never actually see him that much. He is always on his computer tucked away in his room and joins the family for meals but we eat in front of the TV so no real conversations take place. I realized that it was during this vacation that I had actually spent a great deal of time with Thomas and it was during this vacation that I realized how far from me he had disappeared. I had managed over the last few months--or maybe years--that I had numbed the pain of the truth of who Thomas had become by avoiding him, getting lost in my own endeavors, and avoiding any emotion I felt that was negative where he was concerned. I had hidden myself from him, tucked myself and my emotions about him somewhere deep in the back of my mind, and I had gone on with my life.

So, I texted him from the car on the way to the casino that night on the trip and I asked him to go watch the sunset because I wanted him to connect with God's creation. He isn't religious, not even a little bit, and I didn't mention God to him in connection with the sunset, but I did ask him to appreciate what he was seeing as the sun sunk into the ocean.

When I came home from the casino I was excited to ask him about watching the sunset.

Had he been mindful?

Had he appreciated it's beauty?

Had he felt the power of the universe and all of its amazing machinations?

When asked about it he paused....

"Did you enjoy it?" I asked.

"It was okay," he said.

"Were you mindful while you watched it?"

"Well, no, but I tried."

I realized then that he had missed the whole point. As the sun had disappeared, in all its glory, my lost boy was unmoved and had returned to his virtual world on his computer.

This vacation was nice. I stood on the deck with Dan and watched sunsets. I stood on the deck at 3 a.m., alone, and looked at the stars and listened to the waves crashing against the shore. I had a nice time with my mom laughing as we played virtual slot machines on our tablets and I relished every step in the sand that I took when I walked on the beach.

Somehow, though, what I noticed most, what I missed the most, was my boy. My young man, who turns 21 in less than a month, is lost somewhere inside.

The grief has overwhelmed me once again. What I had cleverly hidden in the furthest regions of my mind and heart became wounds reopened as I spent time with my boy and realized who he has become.

I wish more than anything that he had seen that sunset.

Really seen it.

Instead, though, the sun had disappeared that evening and during this vacation to paradise, I realized how much of my boy I have lost.


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