This isn’t connected to my brother but it is to a friend.
My brother has been doing much better recently having been granted permanent housing and care assistance in a disability/special needs community home, contingent on his taking meds and talking with his care team (using CBT to deal with the rest of his delusions ect, that the meds tone down but don’t really get rid of.)
My friend in a different state and with different laws has been having a much harder time. Most recently because their family member went completely off the radar and decided the homeless life was the one they wanted to lead. (Their family members delusions are similar to my brother’s, constantly convinced we are trying to poison them or that the rest of the family is “holding them down” when we usually leave them where they want to be and then try and get them into jobs, ect that we hope they can handle. For the most part, they have never managed a position other than janitorial services, as any other forms of interaction trigger their paranoia and psychosis.)
Today we got the news with confirmation that their brother was found dead of a systemic infection (due to non-treatment and isolation, on the part of the family member.) Based on the initial report, it seems as though he was a regular in the area to a few gas stations, and was living in the woods, but was otherwise not taking care of himself. Multiple follow ups with roving care teams, the local police psyche attaché, and others showed he was competent enough to sign off on disclosures saying he didn’t want or need care. Their state is one where the laws around involuntary commitment or Tx means the patient reserves the right to refuse care even to the point of death, if they want to leave their illnesses untreated.
I have some fairly strong feelings about the situation considering how close my brother came to the same reality multiple times. If left to make care decisions of his own volition, he will almost always choose an option that leaves him without the level of care he needs. On the other hand, I have been preparing to fly out for the funeral I’m just sad. We had a long phone call (writing about it with their permission) about how much they wish the state services were better. The reality is that “non-enforced treatment options” were inadequate for their family members without insight. In the tenuous balance between letting family members live their own lives, versus the reality that the delusions don’t allow all patients to take care of themselves, there is no winning. If you engage in state care without meds you are crazy. If you use meds you’re taking away patient rights and making them less “whole”. I know variations of the argument abound, because some people’s symptoms are tolerable without meds.
I’m not really looking to lay blame at either end but it’s just disappointing. Before this, their family member was a bright, hopeful, young person. The local medical college has a release to use the autopsy and medical findings for SZ research. As part of my college classes, while I will not be privy to the process ect of evaluation, I will be in touch to parse some of the results for them.
I don’t have a background in lab based procedures (autopsy wise) but I understand the medical lingo more than they would. Before my brother became ill I was set to a medical career. While that isn’t in my cards anymore, I already helped them parse more of the scans and initial report reviews that they wouldn’t have otherwise understood. One of the noted finding of the predeceased was that he had a noted shrinkage in the prefrontal cortex, consistent with a study of Yale University observing patient groups with the same diagnosis. They previously had them assessed for frontal lobe epilepsy which usually occurs after head trauma. The tests and EEG showed no evidence of epilepsy and unfortunately, the prognosis of the disease is entirely SZ.
Several rounds of CAT scans and MRI’s showed repeated volume changes. Specifically that the marked thinning and decrease in cortex volumes actually corelates to a prognosis most often seen in other degenerative brain diseases. Seeing as the rate of decline matched those who were previously untreated and lacking in engagement with medication follow ups, it’s looking more and more likely as though Schizophrenia with it’s expression of physiological changes to the brain, may more accurately be described as a Neurological condition rather than a strictly psychological one.
In any case, the phone call and the funeral preparations has made me profoundly grateful for our respite but also deeply sad. My friends family doesn’t have anyone in the medical space to parse the info, so I’ve been going back and forth (not with the above conjecture but with the basics of the information on how SZ affects the brain.) with them, and it’s been horrible. All the more reason I don’t think I would ever pursue a medical career. The prognosis for some conditions and telling these things to perspective families all the time would be horrible.
Most of all, if anyone prays, please feel free to include my friend in yours tonight. I have been including them in mine as I plan the next few weeks to go and support them.