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.



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,


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.


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.

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