A couple of days ago I got in contact with someone who has been instrumental in getting an article of mine published and we got to talking yesterday about Thomas. I expressed how happy I am that he's doing so well and that I couldn't believe that it's happening. She was very supportive but also reminded me of something very important. These "remissions" don't always last.
While we messaged she admitted that she was in the hospital with her son waiting to get a bed because his psychiatrist had screwed up her son's meds and he had regressed after a period of relative stability. She must have spent hours in the E.R. waiting for a bed and part of what held up the production was the fact that her son is on Medicaid. Her struggle and her son's struggle hit close to home and I found myself, in my heart and mind, sitting beside her in that E.R. experiencing, again, some of the things that I had gone through in the past with Thomas's care.
I have forgotten the struggles. My friend that I was speaking to brought up the meds screw up with her son and it brought me back to this time (almost EXACTLY this time) last year when Thomas was struggling and I was fighting to get him some help. He was new to clozaril and other meds and his psychiatrist was busy taking time to slowly titrate meds and I felt he wasn't working fast enough to help Thomas. The higher the dose of clozaril the worse Thomas seemed to get. I know now that what was happening to Thomas at the time was that his illness was progressing much faster than the medication could keep up with and he was going to a very bad place. I remembered feeling stressed, beaten down and practically broken watching Thomas suffer like he was and I remember my anger at his psychiatrist for not doing something more. In my mind the conservative approach was the wrong approach
The chat conversation turned to the announcement by Thomas's psychiatrist that when he has been stable 5-6 months that he was going to begin weaning Thomas off of his meds. I became angry all over again about this time last year and I felt anger about what the future held in the next couple of months.
Tell me something, what is with these doctors who think weaning a STABLE person living with schizophrenia off of their meds is a good idea? My friend brought up a good point and said that it's akin to saying that an epileptic is no longer having seizures so the doctors decide to wean them off of their anticonvulsant . Where is the good sense in that exactly? So then why is it a smart move to wean a stable person with schizophrenia off of their meds? Do they not have a disease dependent on a steady treatment of medications? Is schizophrenia, because it's a MENTAL illness, not the same as epilepsy? Why is it that people can't get through their heads that schizophrenia is as much a physical/biological disease as cancer or diabetes or epilepsy? Why when our loved ones become somewhere near stable do doctors do an about face and abandon their plans for treatment?
I don't understand.
Thomas will have been considered stable for 6 months in June which means at our appointment in June, weaning, or rather as I will call it, "destabilization", will begin. As his mom but more importantly as his caregiver and advocate, I feel like the only insanity at work here is on the part of the psychiatrist and his lapse in judgment about what is right for Thomas. What angers me is that he doesn't have to be here 24/7 to watch Thomas's and subsequently my world fall to pieces. You all know what it's like to see the symptoms creep back in. You all know what it's like to see your loved one become paranoid, hear voices and construct delusions around everyday occurrences. Where are the psychiatrists during all of this? Well in my case he is 50 miles away in another town oblivious to the fact that Thomas couldn't walk home from a friend's house in the dark anymore because he thinks the N.S.A. is after him again.
I am angry just thinking about it.
So as the afternoon turned into the evening my chat conversation with my friend fell away, and while she was left sitting in a cold and unfriendly E.R., I was sitting at my mom's house looking at my bright eyed, happy Thomas and feeling a feeling of foreboding about Thomas's fast approaching 6 month stable mark. 6 months. That's nothing compared to a lifetime of living with this illness. 6 months is a blip on the radar in an otherwise crowded "sky" full of schizophrenia symptoms just biding their time waiting for a moment to strike. Does Thomas, who is condemned to a lifetime of this illness, not deserve more than 6 months of this beautiful life that he is afforded right now thanks to just the right combination of medications?
For me the answer would be that he deserves more. He deserves to be one of the ones I read about who have stayed on their meds for years, who have wives, and children and homes and mortgages and steady jobs and a distant memory of delusional states of mind. Don't all of our loved ones deserve that? Doesn't my friend and her son, stuck all day on a Sunday in an E.R. waiting for a bed because her son's psychiatrist screwed up the meds deserve that too?
I had forgotten the struggles. I had forgotten what it's like but now, I am reminded and I am renewed. Come 6 months time, you will find me in Thomas's psychiatrist's office fighting to keep him on his meds.
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