Friday, December 25, 2015

Merry Christmas From Thomas and I

(photo credit: 123rf.com)



Merry Christmas and Happy Holidays (of all kinds) to all of you! 

I know that this is a tough time of year for some of you and I know things aren't going the way that you had hoped they would by this time of year but I want you to know that you aren't alone. There are many of you out there dealing with the same things and while you feel like you are the only one in the world right now, you aren't and you must keep your hope alive.

For those of you, like myself and Thomas, who are doing relatively well, I want to share in your joy with you and in this moment of peace where we can take a deep breath and relax for today. I know that it's been a long time since I have written and I have missed out on telling you so many stories about Thomas and how he's doing but life has been.....difficult.....for myself. It's no secret, if you've read past posts recently, that I am struggling personally with some things, and unfortunately those things continue to haunt me. However, for today, for this day of hoped for peace, my mind and heart are at rest and I am ready to start the day with my family.

It is 6:30 a.m. here and I am typing this by the light of a warm fire, several candles, and of course my beautiful tree.




Nobody is up with me right now and I am quite content to quietly sit here and write this post and enjoy the peace that surrounds me.

As you can see by the picture, there is a filled stocking hanging from the fireplace screen. That stocking belongs to Thomas. I tried to have several talks with him about how he's now 21 and as a person becomes an adult, presents at Christmas slow down, but essentially that was met with silence. Of course, me being me, and me still being a kid at heart wishing Santa would bring me what I wish for, as you can see by the picture, there are presents under the tree from "Santa" and his stocking is filled with a few things too.

I couldn't resist.

The fact of the matter is, in many ways, Thomas is still a child. His wonderment in this season is innocent and awestruck and so very grateful. I have had to often stop myself during the last couple of weeks and appreciate Thomas for this side of him that still hangs onto child-like appreciation of the season. This year, I personally didn't even want to put up a Christmas tree and I tried to wrangle my way out of doing so, but Thomas insisted, and I can't deny him that just because I'm a Grinch, so I let him have complete control with the design of the tree. He chose blue and white for the colors and even this Grinch has come to love the last couple of weeks with the tree up and lit.

I could write forever sitting here in my most peaceful place I have been in in a long time but I know you have families and festivities to get to so I won't hold you up with any more to read. More than anything, I really really just wanted to tell you all

Merry Christmas
and
Happy Holidays!

I know if Thomas were awake right now he would say the same things to you all.

Have a beautiful day everyone, as much as is possible, and I will be back in the New Year to write again.

Much love to you all,
                  Melanie & Thomas

Monday, November 16, 2015

No!!!!!! Don't Do That!!!!



I have struggled lately with what I guess could be called "racing or obsessive thoughts". It's a product of stress and of my bipolar illness. It's been driving me crazy and I've taken to, most afternoons, going to bed and trying to slow my brain down by taking a nap. Yesterday, however, I crawled into bed and was tormented by thoughts that wouldn't go away no matter how much I breathed deeply and prayed for them to go away. Finally, I rolled over and in a frustrated effort to make them stop, I took 3mg of Ativan (an anti-anxiety medication) and tried to fall asleep. Within 20 minutes, nothing had changed so I took 2 more milligrams. I know, I know that for those of you who know what a "normal" dose of Ativan is, you know I took more than I should have. Even I know that. But I was desperate. After some time, I think I got 15 minutes of peace and then I woke up again to the racing thoughts only now I was thinking about how stupid I had been to take so much of it and I began to think about my life lately, how stressed I've been, how much I've needed a break to the point of actually considering running away for a while. I thought about how I could land myself in the psych hospital if it went much further. Along with that, I started to think about the fact that I had taken more of the Ativan than is prescribed and I thought that I could (but not likely) die from it.

I wasn't going to but I thought about it.

That prompted me to think about the fact that Dan doesn't have a single phone number for my friends and my doctors and Thomas's doctors to call in case of any emergency where I might be unable to make the calls myself. So, I got up and went and sat in the living room and began to program his phone with the numbers of the most important people in my life: my doctors, Thomas's doctors, my sister and my best friends. Then I went on to message everyone and let them know that I had given Dan their numbers "in case something happened to me." This, of course, was met with return texts to me from my family and friends asking me if I was okay. They all know I've been struggling lately and they were worried. I explained to them the situation and they reluctantly accepted my plan.

It was my sister, though, that was most concerned. I told her exactly what I had done. I told her about the racing thoughts, the over medicating, and I told her that I wasn't going to lie, that I was completely overwhelmed right now and feeling very tired and very alone in the world. She, of course, was scared to death--understandably so. She told me that she had just taken a class on suicide and that she was worried for me. I texted back, half laughing, that it probably didn't help my case that I had spent last weekend cleaning out most of my things and sending them off to Goodwill. My state of mind at the time of ridding myself of my possessions was that I have so many things I haven't touched in over a year and I felt they had to go. FAST.

Then it happened. The whole point of why I'm writing this blog and giving you the backstory.

Thomas came into the living room with a scared look on his face and he said,

"Nate said I should come see you because you are struggling (or something--not an exact quote)"

Nate is Thomas's biological dad (my ex-husband) who is married to my sister and who doesn't play much of a part in Thomas's life but because I had been having this conversation with my sister, he had taken it upon himself to alert Thomas that I was somehow in danger. I sat there dumbfounded and trying to figure out what exactly was going on in that moment and I told Thomas not to worry and that everything was fine.

No sooner did he return to his room and he was back out in the living room scared to death looking at me and asking me what was going on. "Why was Nate saying this stuff?"

I got up and went in to Thomas's room to check the Facebook chat and just as I looked down, another message came up from Nate saying,

"Your mom's been giving everything away!" (not an exact quote--again)

But I stood there staring at the words he'd written to Thomas thus far and I tried like hell to figure out why he was doing this to Thomas. Why tell a young man with schizophrenia that he needs to worry about his mom when, really, HE DOESN'T? He just needs to be left alone to watch YouTube videos and be as happy as possible.

Then it happened. Thomas turned to me and he said with fear in his voice,

"Mom? Are you suicidal?"

Dear Almighty God. WHY?!?!?!?

Why did my ex have to say anything to Thomas about my conversation with my sister. I was venting to my sister, something I do all the time, and I was only expecting my sister to support me. Now, suddenly, here I was with my boy with schizophrenia who worries like crazy about his mom on a good day, with him asking me if I was suicidal!!!

Naturally, I gave him a hug, told him I was fine, spared him the content of the conversation with my sister (which was not suicide talk), and I told him everything was fine and that he just needed to tell his bio-dad that he had checked on me and everything was fine.

*BIG SIGH*

Oh
My
God

We so did not need this. Thomas, in many ways, is a child. Thomas worries about me constantly. Why on earth would someone throw on his plate that his mom is suicidal when the whole thing was supposed to be a private conversation between two sisters?!? And furthermore,

HIS MOM IS NOT SUICIDAL!!!!

So, needless to say, my evening was filled with trying to reassure Thomas that everything was okay, that I was okay.

Here's the thing. I will give my ex the benefit of the doubt. I believe he was trying to help. I believe he thought what he was doing was helpful. I also believe that he doesn't have a clue that Thomas does not have the capacity to handle things like this. Had something actually happened to me, I would have appreciated him reaching out to Thomas and COMFORTING him through a tough time, but this?

Not helpful. Not at all.

Now I'm kind of at a loss as to what to do about this whole thing with Thomas. Is he going to file this away somewhere and worry that his mom is on the brink of death? Is he going to carry this around with him and not want to leave my side? I don't know. All I do know is that despite his best intentions,

I really wish my ex had kept his mouth shut.

Saturday, November 14, 2015

Dementia Praecox--Could Emil Kraepelin Have Gotten It Right?

I look at my boy today and I see a young man caught in a different world than the one I live in. His hair is grown out from its usual short style and it is greasy and full of dandruff, his sideburns are haphazardly ungroomed and his goatee is growing out. He looks haggard, rough, and unkempt and he tells me the other day that he never looks at himself in the mirror. At the time that he said that, I asked him why he doesn't. He said he didn't know. But, because he doesn't look in a mirror, he doesn't see how he presents to the world. I'll occasionally send him in to look at himself if he has milk in his goatee from eating cereal but with his visual neglect issue, I doubt he sees anything but the milk on his goatee. In the absence of an explanation from him as to why he doesn't look in the mirror, I can only guess and the possibilities are endless and really, in the end, does it matter? I can't force him to look at himself, I can only be his reflection on some level by asking him to comb his hair or clean food off of his face. 

This is something we have dealt with for a long time. This is something many of you are sadly, very familiar with. Our loved one's inability to take care of themselves is a hallmark of this illness and we all know it well.

But what if it takes a turn for the worse?

What if, in an unexpected moment in time, their inability to care for themselves on a very critical level is revealed to you. What do you do then?

Well, this happened to Thomas. Rather, this happened to Thomas and I because it was me, who in my capacity to better understand the gravity of the situation, felt all the heartbreak, all the pain, all of the anger at this illness, all of everything you can feel when your loved one has crossed over to a dark place in the self-care area of their lives. 

My beautiful boy, my innocent, young, 21 year old man-child and I found ourselves in a situation that I will go no further to describe out of a deep respect for Thomas and a fierce need to protect him--even from himself. What happened didn't register with him as any kind of big deal, it really didn't register at all, and because of that, I was left cast back a couple of years to a time when my dad was alive, suffering from dementia, and needing constant care for all of his needs. I put the following picture in this post because this embodies the moment when we do things for our loved ones out of pure love, the best of intentions, and with a need to keep them comfortable as they travel through this spirit-robbing disease. Be it schizophrenia or dementia, for me and Thomas last Tuesday, they were one in the same. 

This picture is of my mom helping my dad brush his teeth. With nothing but the most amazing love and dedication borne of 46 years of marriage, my mom took care of my dad in every possible way and did it with her heart and soul.


Last Tuesday, alone with my boy, I found myself in a similar place as what is pictured here. A place where the world around melted away and all that mattered was love between a mom and her son.

Since that ill-fated Tuesday over a week ago, my heart has been broken, I have been left to wander the landscape, again laid barren by this horrific illness, and I have tried so hard to face reality. I find it interesting that with schizophrenia, the people who live with it, have trouble living in reality, yet here I am, not riddled with this illness, and I, too, cannot live in reality about what I've witnessed. I need so desperately right now to escape it all, to pretend it's not really happening and I need my young man to become the young man he was supposed to be before this illness interrupted his life and development.

Then yesterday, in my own personal pursuit of finding my own good mental health, I was reading a book on trauma and its effects on the body (The Body Keeps Score: Brain, Mind and Body In The Healing of Trauma by Bessel van der Kolk, M.D.Throughout the part that I read, they used schizophrenia as a reference point for portions of the book and the author referenced Emil Kraepelin and his initial diagnosis and name for schizophrenia as "dementia praecox". 

(From Wikipedia) "The primary disturbance in dementia praecox is a disruption in cognitive or mental functioning in attention, memory, and goal-directed behaviour. Kraepelin viewed dementia praecox as a progressively deteriorating disease from which no one recovered. However, by 1913, and more explicitly by 1920, Kraepelin admitted that while there may be a residual cognitive defect in most cases, the prognosis was not as uniformly dire as he had stated in the 1890s. Still, he regarded it as a specific disease concept that implied incurable, inexplicable madness."

There it was, in black and white.

Dementia.

The very word that had plagued me since my incident with Thomas over a week ago. Since that day, I have had only one reference point for what had happened and that was the months I spent helping my mom take care of my dad who had dementia. Then, in my reading yesterday, there it was, an early 1900's reference to an early understanding of schizophrenia. Kraepelin saw it as a dementia and my experience with Thomas was exactly that.

Here is the thing, though. I never ever thought this day would come. I hadn't even imagined it in my head. I've tried so hard to hold onto hope that things will get better but slowly, Thomas is slipping through my fingers into some form of dementia all his own. I'm at a complete loss for what to do. I am frozen there, in the minutes after the incident, when I was trying to make sense of something that didn't, and couldn't, make sense (as is often the case with both dementia and schizophrenia). I am frozen here in my grief. I am frozen here in the understanding that Thomas doesn't understand the gravity of the situation and I am deeply grieving yet another loss of a piece of my boy.

So, to the healthcare providers who think that schizophrenia ends when the person with it is free of delusions and hallucinations, I implore you, please, there is so much more than that. There is no "cure" and don't be lulled into thinking that if the hallucinations and delusions are gone that you have successfully treated your client. There is much more, incredibly much more still to be done to help your client. My boy has very low-level hallucinations and as far as I know, he has no delusions, but I can promise you that he is far from healthy. Now, free of the positive symptoms, he is fighting yet another battle, a battle for his cognitive abilities, for his ability to see the world realistically, for so many things that you just don't know about because you're too busy celebrating the conquering of the positive symptoms.

Our story changes now, that of Thomas and I, we have crossed a threshold into a new dimension where reclaiming my boy's spirit is a daily battle and a battle that never seems to end.


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.


Thursday, September 17, 2015

"If I Die Young"

If I die young
bury me in satin
lay me down on a bed of roses
sink me in the river at dawn 
send me away with the words of a love song
the sharp knife of a short life
I've had enough time.


The other day I heard the refrains of this song coming from Thomas's room. He had, of course, found a different version,  more suited to his taste in music and his youth. I heard the song, though, and was immediately transported back a few years to a time when a neighbor boy that was Thomas's age died tragically in a summer boating accident. I stood outside his room, leaning against the door jamb with quiet tears rolling down my face as I remembered that time all of those years ago and how grateful I had been to have my boy with me still, with his whole life ahead of him. He would have been 16 then.

Then I really started listening to the song, not as a grieving neighbor to a lost young man but as a mom with a son with schizophrenia. It began to dawn on me that this song was being played by my boy and I began to wonder why he'd chosen this song. I watched as he unloaded the parts to a new Gundam model he was getting ready to build as he sang pieces of the song and it hit me,

He's singing a song about dying young.

I wondered where his mind was in that moment. 

Was he thinking of dying?

Did he see that he'd live a short life?

We talked a little bit about the song and I told him about how it had come out just at the time that our neighbor Jonas had died and I told him how sad I had been that such a young man lost his life. Then I wondered and asked him out loud,

"Does this song make you sad?"

He stopped what he was doing for a moment and simply said,

"Yes."

My heart dropped and I couldn't find any words to push the conversation any further. All I could think to say, and I did say it, was,

"Kiddo, if you start feeling like you want to die will you let me know?"

He promised me he would and I stayed in the door jamb to finish out the song and watch my beautiful boy.

The whole thing hit me pretty hard because just a day or so before, my mom and I had been having a conversation about my own death and about what family heirlooms would be passed on to Thomas. I had asked Thomas if he wanted anything from the family and he really didn't. Knowing that, it caused me to think about what would happen in the days and weeks after my death as Thomas began a life without me. Both my mom and I didn't know how he would survive. He has nobody to turn to, perhaps a friend would step up and take him in, but I have no idea. 

Then my mom voiced the one thing nobody wants to say but that a small piece of me thinks about. Would it be better if Thomas preceded me in death? I'm not talking about him ending his own life or God forbid him dying young at all but would it be better for him to live a relatively long life but find his way to heaven before me? With this illness you just never know. I never know if tomorrow he'll wake up and the voices will be back. I never know if he'll become so paranoid that he can't leave the house or if, God forbid, he becomes delusional and believes I am his enemy in some way. We all know the potential for this illness and we all, as caregivers, don't want to leave our loved ones to have to cope with the worst of the illness, alone.

I don't know. I just really don't know.

Most importantly here, though, is that Thomas has now become attached to a song that concerns me deeply. He loves music and he's cognizant of it's messages and I worry that this song, "If I Die Young", will somehow stick inside of him and cause him to think too deeply about his life and his death. 

Ever since the day I stood in the entrance to his room and listened to that song and cried quiet tears, I haven't been able to get the thought of losing my boy out of my head. I just don't know what I would do. He is my life. Yes, my life. He is my only child and he has been with me for almost 21 years now.

I don't want to lose him.




Tuesday, September 01, 2015

Let's Talk About My Mental Health


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I have had comments posted to my website lately that express concern for my mental health. I have read every one and taken them into consideration because I am always interested in how other people see things. I was even told by one person to print up a post of mine and take it to my therapist for him to review and help me with. All of the comments give me a lot to consider but I feel like I ought to say a few things to clear up where my head is at.

First of all, let's face it, being a caregiver is hard. There are good days and there are bad days and anyone with any love, compassion, hope, a desire to make things right for our loved ones, and grief over the truth of the entire situation feels stress and feels helpless from time to time. Not only that, it's been my experience that even anger and frustration come into play. This is not said lightly by me as I have met countless people who feel exactly like I do. It's not easy and it never will be. It is heart-wrenching that our loved ones are sick and generally the prognosis is not good and all of this makes for a caregiver who becomes stressed out from time to time. Sometimes we even need to see a therapist ourselves and sometimes we need some kind of medication to reinforce the therapy we have sought. There is no shame in this, I think it should almost be a prerequisite for being a caregiver to someone who is seriously ill, and I think, if you're not already in therapy that it's not a bad idea to give it a try sometime. For me, I have a therapist and because I also live with bipolar disorder, I have medications I take to manage it. You could say I am fully covered in that department but that does not make me invincible. I am human and I am going to falter. Not only that, because life is cosmically balanced in my opinion, I will also triumph in places others might not expect me to triumph. This goes for all of you too. Caregiving will never be easy but I'm certain very very few of us would give it up.

Second, for me, what I struggle with, why I get frustrated and angry, is because I feel a great deal of pressure from the outside to "get it right" for Thomas. His therapist, while very well-meaning, puts a lot of pressure on me and sometimes, especially lately, it's hard for me to cope with. I think we tend to look to professionals for the answers to what is wrong with our loved ones with schizophrenia and to also depend on them to help. Sometimes my expectations of Dr. K. are high; I want him to make this all go away. That's unfair and unrealistic but I still wish for it. For his part, where I am concerned, each week, lately, has been met with a "homework" assignment, sometimes more than one, that Thomas or both Thomas and I must complete. The homework seems simple sometimes, in theory, but it's not most of the time. As a result, I walk away with Thomas from a session feeling like what's ahead for the week for us is difficult, if not impossible. I know that Dr. K. wants to help Thomas and I get him ready for the real world but he sees Thomas just once a week and often he really just doesn't have a clue about Thomas's reality once he's home and he doesn't have a clue about what my life is like outside of being a caregiver. Just last week I tried to explain to him something about Thomas and how he comprehends things and because it's hard for me to make sense of sometimes, it's even harder to try to explain to someone else, especially when there's just 10 minutes left in the session and I can't get my thoughts together enough to explain what is going on. All of this amounts to a great deal of pressure and pressure, at least inside me, breeds frustration and sometimes anger. I want to do what ever I can to help Thomas but it just isn't always possible.

Then there is life outside of caregiving. There are familial relationships to live with that aren't always easy to deal with. I'm sure many of you can attest to the pressures that spouses, parents, siblings and friends put on us. It's not just about caregiving and whether or not we are doing it right in their opinion but there is also the element of the maintenance of relationships that already had their own flaws long before we ever became caregivers. Then there are the tragedies, the other illnesses that claim family members or friends. For the first two years after Thomas was diagnosed, my dad had a stroke, 2 brain surgeries and then finally succumbed to death. While trying to take care of Thomas at his worst, I also had a beloved parent who was suffering and dying and who needed equally constant attention. My dad is gone now and I am left with only grief that creeps in from time to time but even grief takes a toll that puts a chink in my caregiver armor.

As such, taking all of these things into consideration, not to mention the myriad other things that any given day brings me, I do struggle, I'm the first to admit that my mental health is far from stellar, I am flawed in my relationships including my one with Thomas, and

I
Get
Tired.

Even still, I love Thomas. He is my only child. My commitment to him started the day I learned he was in my belly and it remains to this very moment and beyond. I will never be a perfect mom to him nor will I be whole and invincible, so yes, I will struggle but I suspect that so will all of you.

I know I'm not alone in this role of caregiver for someone living with schizophrenia and I know that I'm not alone in what I've said today. In fact, I think we are a community of like-minded people all over the world who fiercely stick together, fight for each other and, most importantly, fight tooth and nail for our loved ones even if we fail sometimes.

So, let's talk about my mental health. You know what? I think I am doing okay given the circumstances. I am in the game, I haven't given up and I will continue to do my very best to care for Thomas and myself including the others around me who need me from time to time.

I won't always do it "right". I won't always live up to people's expectations but I will always be trying my best.

And I know, so will all of you.

We're all going to be okay.


Friday, August 28, 2015

Tell Me Again, Please, What Am I Trying To Do Here?

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In the spirit of trying to teach Thomas independence, Dr. K. wanted me to have Thomas make another dinner. Thomas chose Hamburger Helper, a meal he's made at least two times before, and I thought to myself,

"Okay, this time I'm staying out of it. This time I'm going to sit down and watch the news and leave him to prepare the meal."

No sooner did I sit down and from the kitchen came,

"Mom? I need your help. I'm really having a lot of anxiety about this. Will you come in here?"

I got up to head into the kitchen but I'll be honest, a part of me was mad. I didn't understand the level of anxiety that he had for a meal he's made before. But I went in there and stood and watched as he began making the meal. Every step of the way he needed help. It wasn't that I stepped in and did it for him, it was more that he just didn't comprehend how to follow the very simple steps it takes to make the meal. The directions are literally as follows:

1. Brown ground beef and drain.
2. Add milk, hot water, sauce mix and rice and bring to a boil.
3. Reduce heat and simmer for 20 minutes, covered, stirring occasionally.

That's not that hard, right? Am I seeing this wrong here? I mean, the Hamburger Helper company has made it as simple as can be because, after all, this is a convenience meal and they're trying to make it so the "chef" can do this easily.

The thing was, my chef couldn't do it. He'd read the directions and begin to follow them but then he'd forget something and ask me if he was done with a particular step and I'd have to tell him to go back and read the directions and he'd go back and sometimes he wouldn't get it and I'd have to tell him what he'd missed.

I was dumbfounded!

Here it was, the plan being to have Thomas learn how to be independent and cook a meal, and here I was, once again, standing over him helping him every step of the way.

Again, I state, I was mad.

Maybe you'll understand this and maybe you won't but all I could think to myself was,

"What am I trying to do here? He has got to learn this stuff and I've taught him over and over and practically held his hand the whole way and still he can't do it.

Is it me? Have I failed somehow as a mom?

What?

So, then, as meal prep was coming closer to being done, Thomas states to me,

"When I'm living on my own, what am I going to do with all this food? I won't eat all of this."

And there it was. You would have had to have been there. This was not what it sounds like on the surface. This was a kid looking for a way out of having to prepare a real meal. I told him that he could prepare something like this and put the leftovers in the freezer so he wouldn't have to cook another night and he was wholly unconvinced. He no more wanted to prepare something like this than fly to the moon. So, again I ask,

"What am I trying to do here?"

Let's not forget he's a 20 year old kid. Let's just let him be that for a minute here. So, let's say he's on his own. Let's say he doesn't have schizophrenia. Tell me,

"What 20 year old kid on his own ever prepares a proper meal for himself?"

Most kids eat convenience foods, Top Ramen, TV dinners, heck, even just chips and a Coke. They do that because they are 20, they're free from being under the thumb of their parents and they're expressing independence. When I lived on my own, I ate hot dogs and macaroni and cheese! This is what we do as independent young people.

So, what am I supposed to do? On the one hand, if we look at Thomas as an average 20 year old, shouldn't I just let him be him and eat the way he wants and hope to God he'll get a piece of fruit or some vegetables fit into his life somewhere at some point? On the other hand, he is a young man with schizophrenia and the challenges of anxiety, apathy, memory loss, and an inability to follow simple directions, to name few. No matter how hard I try, no matter how many times I "hold his hand" while he prepares a meal, he will always face these challenges.

So, again, I say,

"I am so mad!"

I am mad because he doesn't get it.
I am mad because I have to be there every step of the way.
I am mad because he can't follow directions.
I am mad because he lets his anxiety run his life.


And, really, what I'm mad at is,

"He has schizophrenia!!! He's never going to "get over" this illness. He will spend the rest of his life dealing with one aspect or another of this illness. It is never going to end! There is no reprieve."

I'm so tired. I sit here drinking my coffee with more coffee than cream in it in the hopes that somehow the caffeine will ease this aching in my chest. I am sitting here wishing my coffee is combined with rum, or something, just so I can, hopefully, feel something different than I do.

ANYTHING DIFFERENT!

But here it is, the morning of a new day, and I will get up from this computer when I am done writing and I will go on. I love Thomas and I want him to be independent. I'm even really and truly ready to let him go and try his wings even if it means he doesn't eat a proper meal. I'm not sure I have anything left to offer as a mom.

He needs to get out into life and give it a try.

Monday, August 24, 2015

The Empty Milk Carton

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The other day, out of the blue, Thomas sprung on me that he was, again, thinking of moving out. It's interesting that he announced that because I had been thinking over the previous days that I thought it might be worth a try for him to move out sometime soon. He's doing a few things a little better like trying to keep up with his laundry and he, now, has totally taken over managing his medication and putting it into the weekly pill case. These are things that I didn't think I'd see for a long time but he's doing it!

When he brought up in therapy that he wanted to move out there was a definite pause as Dr. K. and I took in the news. I could sense Dr. K.'s apprehension about it and he right away began questioning Thomas about his life skills. This is what is so good about having an outside perspective because as Dr. K. talked, I realized, much to my chagrin, that Thomas is far from being able to move out. I take care of so many things in Thomas's life that I don't think about what it is he is not learning for himself. It's not that I feel like I need to do these things anymore, it's just that it's my job. I'm a mom and I'm a wife. I take care of the house and the meals and many other things. I don't think about these things because they are things I have done my entire adult life.

As Dr. K. talked, I realized that there is still much for Thomas to learn. He doesn't know how to write a check, granted he's never had a need to, he just uses his debit card, and he doesn't know how to keep a proper budget, planning for specifics like rent and utilities. These things are all-inclusive in the rent he pays us but he's never had it broken down for him. That's my fault, I guess. As for grocery shopping, he can now go through the whole store alone and pick up the things on his list but these things are simple like apples and cereal and snacks and desserts. They are hardly things with which to prepare a real meal. I have had a few "sessions" with him teaching him how to make dinner but he doesn't really know what it's like to budget for a week's worth of food and plan meals. That's been something that I haven't taught him because of the way I shop.

When I was married the first time, we had a budget. I clipped coupons and when we ran out of our allotted money for the week, we ate only what we had in the house. Now, with me shopping at Costco and buying in bulk and grocery shopping trips being used to supplement the things I buy at Costco, we now live a life where "shopping for a meal" consists of going downstairs, pulling out a self packaged bag of meat and then going into the pantry to pick sides for the meal. None of this teaches Thomas about the realities of living in the real world. I'm not sure how to remedy this situation because at this point, it's cheaper for us to buy groceries the way we do now instead of the way I used to when I was married before. Clearly this is something that is going to need to be worked on and I'm going to have to come up with a way to change the habits we now live with.

The other thing that Dr. K. brought up was what kinds of bills Thomas would have if he moved out. He mentioned his therapy bill, his psychiatric bill and his meds. Right now, I haven't seen a bill from those things because insurance is covering most of it between the insurance he had before he was declared disabled and now Medicaid. This doesn't paint a clear reality for Thomas because with insurance, bills are sporadic and meds only become an issue when the new insurance year starts over and meds start costing more until the family meets its catastrophic cap. What Thomas doesn't know, too, is that for months now I have been working with my sister and her husband, Thomas's biological dad, to get him put on his insurance for life because that is something that could be offered since he's declared disabled. The problem is, right now it's a bit of a fight to get my ex to get the ball rolling with getting that insurance for life. Thomas has not been included in even the tiniest detail of this. Beyond that, what Thomas doesn't know is that if that insurance for life doesn't come through, he will be solely on Medicaid and that is a huge game changer. As all of you know who live with Medicaid only, their coverage is not terrific and things like certain meds aren't even covered. While I haven't looked into it, I would assume Thomas's Latuda won't be covered since it's a brand new medication with no generics offered for it. If it's not covered then Thomas will have to be taken off that med and as we all know, changing meds can be disastrous which, more often than not, leads to a setback. Dear God we just don't need a setback! All of this, though, Thomas knows nothing about. He's sheltered from it mainly because I don't see a point in stressing him out about it but it's a looming possibility and it will definitely affect how he's going to do if he moves out.

Apart from those things, there are still other things to think about. Dr. K. asked Thomas how he would feel if he had purchased a gallon of milk and when he went to the fridge one morning to get milk for his cereal he realized that his roommate had finished off his milk without his permission. Thomas's response was that he didn't care, he probably wouldn't say anything and he'd be fine with going without milk that morning. The problem is, and I think Dr. K. and I are on the same page with this, Thomas needs to care. He needs to see that he has a right to have his things respected and he has a right to be upset that his milk has been finished up and he has a right to say something to his friends about it including expecting them to replace his milk. Thomas is such a sweetheart and passive and is afraid of upsetting anyone. He'd go without something that belonged to him just to keep the peace. This is not a good quality to have in the dog-eat-dog world of inconsiderate roommates. Therein lies a problem. How do I teach him that life skill? How do I teach him to care about that, to be indignant if that happens and how to be assertive and respectfully ask his roommate to replace his milk? Thomas's innocence is one of his most endearing qualities but it hardly prepares him for life outside these walls. In fact, it's a disability of sorts because it limits him from living the best life possible for himself.

So, as you can see because of what I've mentioned here, plus the many other things I don't have room to mention right now, he is far from being able to move out. There is so much I want for him, most especially his independence, but there are many hurdles to cross before that happens. I can teach him how to shop for and prepare meals, I can teach him how to do laundry but there are so many things about real life that can't be taught, they just have to be experienced, and I can set him loose to learn those things but I'm not entirely sure he'll be able to pick those things up just because they go against the very core of who he is.

Life can be so cruel, people can be inconsiderate, things can pop up that you can't plan for and all of those things are on Thomas's horizon if he is to move out. He has a lot to learn, a lot of toughening up to do and he needs to learn a sense of justice for himself. We've started the learning process but for him to be able to move out, we still have a long way to go.

Friday, August 21, 2015

For Better Or Worse

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Yesterday Thomas had therapy and it was a little tough to handle. We all had talked a little last week about how Thomas is afraid of his step-dad, Dan, and yesterday Dr. K. delved further into the issues we deal with in our home when it comes to our interactions as a family. One of the hardest things was sitting with Dr. K. and telling him about what Thomas deals with and even what I deal with from time to time with Dan and watching Dr. K.'s reaction to our stories brought home that things aren't as good around here as I thought they were. We've been struggling a lot lately, Thomas and I, with issues with Dan and his volatility especially where Thomas is concerned, and I can tell you that sharing our issues with a psychologist and getting his take on our reality is sobering. It's so easy to live our lives day to day in the way that we do that we forget that it isn't right that we have to deal with what we do.

To begin with, Dr. K.  had Thomas place a number on his fear of Dan. Thomas deals with a constant fear of Dan and he rated his baseline fear at a 5 out of 10. That is how he spends his life, every day, every moment that he's around Dan. He lives in constant fear of upsetting him and part of the reason he hides out in his room is to avoid him.

I have written before about Dan, explaining his inability to stay consistent with his understanding of Thomas's schizophrenia, and the problems still remain to this day. There are days when Dan will totally understand that Thomas is sick but then one day I will bring something up about what Thomas is dealing with and Dan, for seemingly no reason at all, will flip out and unleash a tirade of frustrations saying that Thomas is "immature"and that he "needs to grow up and stop acting like a baby". It doesn't end there but that's the gist of it. For a while now I've been asking Dan to help Thomas find a new computer desk and on Sunday he seemed to be on board with it but when he went in to talk to Thomas about what Thomas might want in a desk, Dan, instead, told Thomas that his room was filthy, that he is a "hoarder" (which is not true) and he proceeded to go piece by piece through Thomas's things and deem some things garbage and tell him to throw them away and to store the other things that he didn't use. Yes, Thomas's room is messy. Yes, there is a layer of dust on everything and yes it would be good for him to straighten things up a little but he is far from being a hoarder and the things Thomas surrounds himself with are things that make him happy. I don't usually focus too much on his room except to ask him to vacuum every now and then and change his bed because I know Thomas's room is just how he wants it and I think he deserves to have his personal living space kept in the manner in which he wants it to be kept. As for the whole "helping Thomas with a desk" plan, that went out the window after the room inspection and subsequent scolding for what Dan feels Thomas should be doing with his things. So, instead, I spent the morning on my computer looking for a desk for Thomas and doing my best to keep Dan away from Thomas.

This is how it is.

For Thomas, he lives at a level 5 fear and I don't blame him one bit. Dan is "the man of the house" but he is not a loving father to Thomas and my marriage is an often tension-filled guessing game of when it will be that Dan will flip out and find fault with either me or Thomas. I want to make it clear that he doesn't physically abuse either Thomas or I but the constant unpredictability of our lives is tiring and frankly borders on it's own definition of abuse. Nobody, especially Thomas, should have to live under a constant cloud of fear but in the 14 years I've known Dan I have never found a solution to all of the issues. If he were consistently supportive of Thomas and his illness, our world would be a different place but instead we just never know what each day will bring.

So, Dr. K. initially thought it might be a good idea to have a family session or two with Dan and after Thomas and I told him in more detail what we deal with, Dr. K. decided to put that plan on a back burner and instead try to focus on helping Thomas cope with his fear. I am so angry that Thomas has to live like this. I am angry that he has to deal with the symptoms of his illness and then has to deal with this whole other level of stress.

Sadly, there are no solutions to it. I have tried, too many times to count, to figure out how to change things around here but I fail every single time. At this point all I can do is protect Thomas the best that I can and keep Thomas and Dan separated as much as possible. There is some semblance of a relationship there, they say hi to each other and sometimes they exchange talk about their day but it begins and ends there. There are no hugs, no "I'm proud of you son", and Thomas even stated last session that the only time in all of his life that he has seen Dan be kind was the day the police showed up after a Facebook friend of his called the police because Thomas was threatening suicide. It literally took the threat of Thomas wanting to end his life for Dan to find the empathy inside to care for Thomas and want the best for him.

I wish things were different. I wish that someone had the answer to the issues in our home but instead we will just go on living at status quo with Thomas living in constant fear. That is no way for anyone to live, especially for someone with schizophrenia but until we find a way to remedy our situation, this is our life.

For better or worse.

Thursday, August 20, 2015

I Am Here With You

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As I have read your responses to Sherry Hunter's post, I am struck by the tragic stories so many of you tell. To some degree I have been off of the front lines since Thomas is doing relatively okay and I have somewhat forgotten what it's like to be in the middle of a crisis where I'm running him to the hospital or scared about whether or not a medication will work to take away active psychosis. I have read that a couple of you have even lost your children to death and my heart breaks as I read your stories because it seems so unfair that this illness took your children from you and the final blow came when the illness made it impossible for your children to live anymore. So many of you are caught in an almost constant crisis and either they have worn you down or you are quickly reaching your breaking point. What I can offer you is this:

I have been where you are. Thomas has been in many crises over the years since his diagnosis and if you read back over my blog through the last couple of years you will see that I have been where you are now. I know many of you will have to fight this unrelenting fight for a long time and you might not see much peace but I also know that for some of you, it will get better. So many times I was certain that this was the end for Thomas, that he would spend the rest of his life fighting serious psychosis and yet somehow here we are today and I am able to breathe a little bit, let go of some of the grief and as a caregiver, live a life that actually includes time for myself. Part of that has been that I have had the luxury of  being able to kind of just walk away and take a break but that wouldn't have been possible without my seeing enough of a change in Thomas that I felt safe to take that break. I know, in the back of my mind, that this respite is fleeting but for now I am taking it all in and allowing myself to breathe a little bit before the next round.

The truth of the matter is, though, there are things about Thomas that are concerning that I haven't written about here. I don't write because I am busy finding excuses for the things I see and somehow, in some distorted way, I feel like if I don't write about it then it won't be real. It is a function of denial on my part and selfishly, for my own sanity, I am remaining in that denial for a while longer because as you all know, jumping back into the fight is fraught with fear and exhaustion and feelings of defeat.

Apart from that, I mostly just want to tell you all that I am reading your stories that you have shared on Sherry's post and elsewhere and I am with you all, praying for you, hoping with you for things to get better and standing beside you in spirit as you wake to a new day with a new round of worries. I am here and we are all here for each other. The best I can offer you during these times is simply this:

YOU ARE NOT ALONE!

Monday, August 17, 2015

My Sister And I And The Truth Of Our Lives

(Picture Credit: bloggingforjobs.com)


My lovely and loving sister came to visit me last week, coming from the east coast all the way out here to Idaho, for some relaxation and family time. I couldn't have been happier to see her and her visit was healing for me in a few ways. She left yesterday, though, but left me with some peace about my life and that of Thomas's.

While she was here, we spent a lot of time sitting on the front porch of my mom's house playing silly games on our phones and tablets and in between games we talked, sometimes even abandoning the games for serious discussions about the realities of our lives,

You see, my sister has a daughter with serious bipolar I disorder and her daughter is 19 now. The family has spent many years coping with the illness and for my sister, coping with what it means to be a parent of a young adult with a serious mental illness. We exchanged stories of our experiences with our kids and we found some similarities in our stories.

To begin with, what's different for her, is that her daughter is not properly medicated. It's not that she doesn't have the medications rather it's that she refuses to take them or only takes them when she feels like it. Of course this leads to many conflicts between her and my sister and my sister works to cope with the behaviors that rise out of her child not being properly medicated. As many of you can imagine, as a mom, she has a tough time trying to find balance and on top of that my sister has other young children to parent at the same time. Her plate is full and out of our discussion came some truths.

Both she and I talked about where our children are in their lives, her daughter fighting symptoms and having no motivation to change her life and refusing to take her medications properly and my Thomas who has the same lack of motivation to change his life and can be found 90% of the time on his computer playing games and watching YouTube. While I am blessed to have a son who takes his medications and takes them seriously in that he knows they help him, he still sees a life for himself shut into his room, unmotivated, and increasingly unwilling to even go to work for the one single day he's scheduled to go. Two Saturday's ago he called me to come get him from work early because he "felt sick" and then this last Saturday he called me in the late morning complaining of a scratchy throat and upset stomach, insisting there was no way he could go to work that evening. What was I to do? I couldn't force him to go so instead I was essentially forced to give him the go ahead to call in sick.

What this brought up in my discussion with my sister is the fact that Thomas was quickly putting himself in danger of being fired from his job. They're tolerant at his work with his unpredictability but they do have a business to run and I know it's just a matter of time before they let him go. What, then, would that mean for his life? With no job, and being isolated in his bedroom and collecting disability, did this mean that this was what his life was going to amount to? Between my sister and I with her daughter needing a driver's license and insisting she already knows how to drive yet won't take the driver's test and is also looking at a life of a lack of motivation and Thomas near being fired and unable to bring himself to find courage to take a college course or increase his work hours so he can better afford to find independence, we have 2 children that we don't have a clue what their fate will be in the future and even more concerning is the fate she and I face as our young adult children don't look towards independence from the comforts of their childhood homes.

So, what does this mean for our future, for mine and my sister's future? What we came to was that we were looking at the rest of our lives with our mentally ill children safely ensconced in our homes living at their current status quo looking towards a future stricken with their respective illnesses. We talked about how as our peers our age are now becoming "empty nesters", we are still looking ahead to a life where our nest will never be empty. Our lives, as we know them now, appear to be shaping up to become our future lives too.

The question then became,

"What are we going to do?"

As we talked, we realized that together we had similar futures and we resigned ourselves to them. It's not that we don't want our kids to move out, it's not that we haven't tried to help them find a way out, it's simply that we've tried countless times over the years to help our children choose different paths and it's become out of our control to make the decisions for them, instead opting to turn their fate over to their own hands and in effect stand by as they choose to do absolutely nothing.

The discussion on that warm, shaded front porch turned to a kind of nervous laughter as we tried to find our classic sense of humor about our futures. There we were once again faced with reality and once again the only way to cope with that reality was to find the humor in it all. What else, when all else has failed, can you do? The minute you stop laughing, the minute you turn your own reality over the the grim truth, is when you find yourself in a place that's hard to crawl out of. Surely there is humor to be found in our situations and one thing you can count on out of the relationship my sister and I share is that we will always find the funny. After years of tragedy after tragedy befalling each of our lives and our children, we have toughened up and learned that a sense of humor is not a bad quality to have in the face of pain and disappointment.

So, there we sat on that warm, shaded front porch and we quietly stared off into the distance over the Snake River and the baked hillsides surrounding it and we accepted what we know to be the truth. Of course there will always be hope. There is hope that her daughter will become enlightened about her illness and begin to take her meds and begin to see that she can have a life of independence and good health and there is hope that Thomas will find the motivation and strength to find bravery and independence but for now, things are as they are.

For now, I'll sit with my sister on the front porch and we'll share the truth of our lives and somehow find humor in it all.

Monday, August 03, 2015

Summer Camp

(picture credit 2wdp.com)


This last weekend I sat down to watch a morning news magazine on CBS and their first story was about a summer camp for adults. As I watched people play croquet, attend lectures and poetry readings and canoe across a beautiful lake, I thought of all of us and how a lot of us have been feeling lately. The response to my posts about being tired and needing a break was surprising and supportive of my feelings. I began to realize that I am not the only one feeling the need for escape. So, as I watched these carefree adults, sans their cell phones and relaxed and talking with each other, I began to imagine a place like that for all of us. Imagine this:

To begin with, we would all be able to afford to fly or drive to this wondrous place set lakeside somewhere in the mountains of the western United States. I selfishly choose the mountains because that is where I find my own peace of mind. There's nothing like panoramic views of snow-capped ragged peaks and the smell of pine trees and the allure of a crystal blue lake. In this place, there would be peace and quiet at night under the star-filled night sky and we'd all gather around a campfire making s'mores or laying on blankets staring up at the incredible night sky where countless stars would be twinkling and the vastness of the universe would be there reminding us how small we are in the scheme of things, how there is endless possibility for our lives, even though it might not feel like it sometimes, and how much promise there is in the future.

In the morning we would all gather for an early morning meditation in the dew covered fields in the camp and afterwards we'd walk, some of us in groups, some of us alone, to breakfast in the big main cabin where we'd have bacon and eggs and waffles with strawberries and real whipped cream. We'd talk about our lives, about the lives of our loved ones with schizophrenia and some of us would cry, receive hugs from the people sitting next to us and we'd all understand each other's anguish and even the joy that some of us are feeling because things are going okay for once in our lives and the lives of our loved ones with schizophrenia.

In this place, at this summer camp that reminds us of our childhoods either at similar camps or in some kind of escape from real life as kids, there would be peace. There would be lectures on coping with stress and others about finding ways to have a life outside of being caregivers. For those who are interested there would be a spiritual gathering where no matter our faith, we could gather together and pray and ask for better health for our loved ones with schizophrenia and even dare to hope that there would be a remission for a little while. We'd pray for ourselves and each other for anxiety-free days, a good night's sleep on a regular basis and relief from an almost constant grief. We'd also thank God or our spiritual leader for the gifts that we have been given like the strength to get out of bed each day, the ability to continue to support our loved ones and the gifts of strength and resolve to be good advocates and make a difference in the lives of our loved ones or even in the world somehow.

Our summer camp would last just long enough to give us some time to get back on our feet, to be able to breathe again and to be able to go back to our real lives refreshed. We'd gather in the parking lot next to the shuttle buses and personal cars and we'd hug each other, promise to keep in touch and give last wishes of hope for better days ahead. We'd climb in our cars, turn on the radio and begin to drive home. Our shuttle buses would deliver us to the airport to fly home to the life that awaits us and we'd stare down at the ground as our flight lifted away from the ground and we'd be grateful for this time that we were given to get away from it all for a while.

For all of us, the mountains would fade into the distance in our rear view mirrors and out our airplane windows and we'd settle in for the trip home.

This is my wish for all of us. This place, this escape, this summer camp where canoeing and swimming and sunbathing and talking and hugging and supporting is what I dream for all of us who are hiding out from life right now, exhausted, depressed, resigned, isolated and feeling alone. I know that for me, and for you as you read this, that this place exists only in our imagination. The truth of the matter is, though, this is exactly what we all need. We are all tired and we need some fresh mountain air to fill our lungs. We need peace, we need love, we need sleep and we need many things we don't dare utter out loud for fear of sounding like our strength is waning and we just can't go on.

Here's the thing, though, we can go on.

We can do this.

I can do this.

We are not alone. None of us are.

Otherwise there wouldn't be this amazing summer camp to escape to in our minds where we exist together, a group of people who all understand each other and support each other no matter what.

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