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.


8 comments:

  1. So sorry, I feel your pain, anger, I lost my boy to schizophrena at the age of 22, I am greiving his loss of a normal life, he too is in his own world one which I don't understand, one which he possibly doesn't even know... My heart goes out to you and your son, this is a struggle that never ends. One that has left my heart broken and one that family just doesn't understand and never will unless they live it

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  2. Having been diagnosed so early with this horrific disease that was one of my biggest fears. Working in healthcare I found a lot of dementia patients had this disease. It doesn't terrify me anymore sadly I don't feel much. I know it will happen if I live that long. Thanks for sharing.

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  3. I also feel your pain and anger. My son has schizoaffective, along with 5 other diagnosis. He'll be 30 this year, he manifested at 19. So far, he's still functional, lives alone (with people coming in to check on him several times a week). People don't realize that as parents, we know that at some point, it's inevitable that we WILL loose our child to this horribly formidable illness. I listen and watch for signs that he's sliding into depression again. Ever ready to fight a horrible thing I cannot see. I'm fighting for my son who isn't able to fight for himself at that point. To stand in the gap to pull him back. So far, it's worked. My fear is when it comes to the point I cannot pull my son back. I understand I cannot fight this thing alone. But I sure as hell can give it my best shot!!!

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  4. Oh Melanie. I am so sorry. Unfortunately I have been dealing with this issue for a long time with mom. It is I believe what has led her to such a horrible place. I noted your comment about the mirror. My mom refuses to look at herself in the mirror. Has for a long time. She covers them all. However she says because they look at her from in there. I am praying for you. I'm feeling so discouraged myself lately. I feel defeated.

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  5. All I can do is wipe away my tears and tell you that I, too, unfortunately understand every word you write. My man-child just turned 23. He used to shower 2 or 3 times a day, he was so concerned with how he looked, how good he smelled, how nicely he was dressed. And now...now he has social workers who try to get him to understand the importance of bathing, brushing his teeth, taking care of himself.

    I refuse to let go of the hope that some day I will have my son back. Not many people understand that I still see glimpses of him from inside the grip of this terrifying monster, schizophrenia. I refuse to let him fight this battle alone.

    I don't know what you believe, but someone once said to me that God gives the toughest battles to his strongest soldiers. Sometimes I find comfort in those words.

    Please know you are NOT alone. Thomas is so lucky to have you <3

    Dondi Dexter ~ OUR Voices on Facebook

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  6. i am that person. im not good at putting things down on ppr that other ppl would understand. my dr.is of course very intelligent but still lackks the real "ins" to this disease. i struggle alone every day. i dont have hallucinations right now but when i do my whole world knows.ive been made fun of. i am never happy for fear of what i might say to allow ppl to think "she's just nuts". and i know that i can be the life of the party but the past few years im just "nuts". i want help. im seeing a therapist for the first time on mon. i hope that that moves along quickly in to the drama in my head. the fear,the ups and downs that i don't understand.i isolate ive gained 150 pounds. ive used drugs for 30-40years. well anyway that is a part of me i just felt the need to share even if it doesnt make sense. than you

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    Replies
    1. You are doing what I would do. Go see a therapist. Your medication may need attention too if it's not as effective anymore. You are not alone. You are brave and a fighter! One foot in front of the other. Baby steps add up!

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  7. This is not so different from the worst of bipolar I but no one talks about it. As they find more similarities than differences I hope one day that the Medical community will have more understanding of the complexity.

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