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.