Tuesday, April 08, 2008

A moment of despair

I lost it last night. I'm talking free-flowing tears and the occasional sob. And what brought me to this point? A box of laundry detergent.

Let me explain. I came in from work with aching legs and fairly exhausted after staying up until 3 AM to finish my paperwork. The first thing Gabriel said to me was, "I was going to do my laundry, but I couldn't get the box of soap open." I struggled to contain my overwhelming feelings of frustration. This isn't the first time this has happened. I have shown him several times how to pull the paper tab and pull the strip around the top of the box. I showed him once again. All evening long that box stood as a symbol of what the schizophrenia has taken from him. And, finally, after he went to bed early, I dissolved into tears of despair.

When most folks think of schizophrenia, they think of the "positive" symptoms: hallucinations, paranoia, delusions. And, believe me, Gabriel has had his share of those. He reluctantly admits that he still hears voices on a daily basis. But it is the "negative" symptoms that are the insidious, truly debilitating aspect of the illness. There's the lack of motivation, the flat affect, the lack of social skills, the neglect for basic hygeine...and most of all, there's the cognitive deterioration. Reasoning, memory, problem solving...all of these have suffered. One day I can spend 10 minutes telling Gabriel how our dog Blossom did at her obedience class, and the next day he asks me, "How did Blossom do at her class?" It's sort of like watching a 21 year old suffering the early effects of Alzheimers. It's so depressing and brings such a sense of loss.

And it's so frustrating to know that no one is addressing these major problems of his. MHMR dispenses medication and does the required bloodwork, and that's about it. I've researched online for resources. There's a program that sounds really comprehensive, with cognitive retraining, transitional living programs, family programs, etc...but it's in Connecticut. I did find a clinical research project being conducted by the NIMH in Bethesda, which is recruiting volunteers. The focus of the research is to determine the extent to which cognitive deficits are the result of the disease or the result of the medications' side effects. While the research isn't aimed at improving the lot of the individual participants, the volunteers will benefit from the expertise of the NIMH professionals and the programming there. I haven't yet proposed to Gabriel that he should volunteer. I don't have very high hopes that he will. First, he has little self-awareness of his condition or his limitations. Second, I think it will be difficult to convince him to voluntarily return to a hospital setting for six months. I keep waiting for a good time to broach the subject. Perhaps last night's episode with the detergent box would have been a good opening...