Clozapine Nightmare

Clozapine onboarding, as a controlled substance, needs a blood draw EVERY week to monitor white blood cells and only 7 days of pills can be distributed at a time for the first 6 months, then it goes to every other week for a few months and THEN, in time, he can get a longer dose of meds at a time without the weekly blood draw.

Week 1 – 9:30 am - GMT (Transportation provided by VA for Stu to go to his VA appt) half an hour to coordinate in the morning … GMT in front of wrong building, then he is driving around trying to find the right building … Stu goes back in the building to call the main center from his home phone cos he is doesn’t know how to use his cell phone, so the guy can’t find him because he went inside … GMT driver says “I need to leave cos I was supposed to leave at 9:45am” … I tell him “it’s your fault you were in front of the wrong building!”  Six Phone calls and half an hour later, He and Stu find each other …

Week 2 – 9:30 am – GMT - Two weeks in a row they have the wrong building and apt # listed… GMT driver stalker dialing me to find out where Stu is … knocking on the wrong door … I am in the shower and do not hear the calls … GMT calls on a NO CALLER ID number, so I cannot call him back to tell him where to go

I text Claudia, VA MHICM caseworker, everything that has happened the last two weeks and I cannot be involved anymore with transportation issues as I am buried at work with no assistant and losing my mind with the time and energy to monitor this time & energy wasting proposition … Stu needs to be the point of contact, not me … she says she will be the contact person going forward for issues …

I threw up my hands and let it go … if he makes his appointments, he makes his appointments … if not … oh well …

Foot home health care – Since Stu needs to get a blood draw every Friday to count his white blood cells for the on boarding of Clozapine, his Friday foot care schedule needs to be modified … Home health care nurse and I text back and forth for half hour about Friday schedule going forward … appt needs to be in the afternoon as the blood draw is in the morning … nurse will need to get a substitute as her afternoon schedule is filled … this texting happens a week in advance, yet the substitute calls the night before and wants to schedule for the morning cos that is when he is being seen already … no communication within their company … after 3 calls back and forth we get it figured out

Stuart likes the substitute when he came, but a week later says he was too touchy feely and doesn’t want him to come back … I told Stu he would need to handle it himself if he wanted someone different (I used to try to accommodate his every whim – no more … his mind changes too much … by the minute!)

Week 3 – 8:30am - GMT to VA Hospital from Henderson, at the wrong building & apt again (they had dropped a 1 in the number and despite, telling the driver, the GMT main office and Claudia, it, evidently, is still not corrected) … Stu is frustrated as he got up early and was ready but they drove on without him …so Stu was late for his Endo appt at the VA hospital,  which they cancelled because he was a no show at the appt time … he went to the pharmacy to pick up the Clozapine for the week and tells me they said he had the wrong SS# that his social was someone else’s. I am 100% certain Stu was confused, I have seen him enter the wrong SS# into the key pad before … I know his SS# by heart as the first 7 #s of our Socials are the same – they were initiated at the same time … but no one was there to guide him as I can not attend 3 appointments a week with him and do my own work… Confusion!

The Pharmacy says they will mail the Clozapine  … Stu does not know to tell them he needs them NOW, as we only get a 7-day supply at a time, and he runs out of the med dose the next day … he can’t remember important information like this … we do not have time for them to mail them without him missing several doses in between

Stu made it home through GMT and thank God somehow Claudia found out the Pharmacy was going to mail them and ran over to the VA hospital to pick them up so she could get them into Stu’s med box on time … I’ll bet that unplanned errand messed up her planned day … guaranteed …

How can we guarantee going forward the GMT will arrive at the right building? We will get him to his blood draw every Friday? Stu won’t be confused about his SS#? The Pharmacy won’t fuck up the instructions as they have a few times and Stu not having the presence of mind to tell them any different? What will happen when Claudia is out of town again and the sub doesn’t know to fix discrepancies? There are so many other moving parts that can go wrong weekly in this crazy scenario … just to reiterate, Clozapine onboarding, as a controlled substance, needs a blood draw EVERY week to monitor white blood cells and only 7 days of pills distributed at a time for the first 6 months, then it goes to every other week  for a few months and THEN, in time, he can get a longer dose of meds at a time without the weekly blood draw.. This is Unmanageable …

Knowing Stuart’s history, we will just get to the final week of the “Clozapine on boarding”, after all this time and effort, by everyone involved, and Stu will take off again on another one of his adventures, fucking up the whole thing … what are ya gonna do?!

Maybe a centralized data base could help where everyone has the same information to make things easier… The VA hospital, the VA Pharmacy, GMT, MCIHM, Home Health Care, Claudia, Claudia’s substitutes, me, whoever else?! Shucks Sara, You are dreaming out loud again … dreams do come true if you believe hard enough … I believe that … it’s called Faith …

In the meantime, this is affecting my health … I am having serious stress indicators/symptoms that need to be checked out, so in my spare time, (Ha!) I am going to doctors to check out everything out … I usually ignore myself and take care of everyone else, but if I am not here, I can not take of anyone else, so I am prioritizing myself more and more these days …

I just keep moving forward, one day at a time, asking God to help me get through and pray for things I should pray for and praying for some things I probably should not be praying for … either way … it will work out one way or another … and the beat goes on …