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That seems to nail our mental health care system. It’s very sad that he can’t be helped further, though. What a loving sister.
I read the article to my husband but had a hard time finishing it through my tears.
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My aunt had a S who started having schizophrenia during or shortly after college. He ended up living at home with his parents for the rest of his life. The parents were very afraid he’d outlive them. He would do things like try to mail signed blank checks. It was hard and heartbreaking for everyone.
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Most commonly, symptoms of schizophrenia appear in late teens/early 20s. From zero to all kinds of delusions. It must be so terrifying (for patient and family alike) when it pops up in a college student away from home.
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Yes, it changed all their lives. He was brilliant and had much to look forward to until schizophrenia struck and upended everything. I really felt for the brother — I’m sure all the family dynamic were forever changed.
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Some parts of the article that struck me:
"I had been taught that someone with a psychotic break needed prompt evaluation and treatment. "
Yes, early effective treatment of first episode psychosis can make a difference in long term outcomes. I am lucky to live in a state that has multiple programs where those experiencing a first episode of psychosis can get plugged into expert care pretty much immediately. The programs offer comprehensive support: medications, therapists, social workers, case managers, job and housing support, family education and support. https://mn.gov/dhs/people-we-serve/adults/health-care/mental-health/programs-services/first-episode-psychosis.jsp
“I apologized for our broken system and for what was happening to their son. They couldn’t know how deeply I felt it.”
I wonder why they couldn’t know it? I know that in the past it was sometimes taught that doctors should never self-reveal, in other words tell patients if they or a relative of theirs had ever experienced the same diagnosis. Maybe some doctors are still sticking to this? In contrast, we were taught that it is ok for doctors to self-reveal as long as they 1) feel comfortable doing so and 2) are doing so for the benefit of the patient rather than for their own benefit. I have found in my career that patients typically appreciate it and say it benefits them.
“my 23-year-old brother’s psychosis”
Yep, late teens or early 20s --the classic age for men to have their first episode of psychosis. (In women it is late 20s to early 30s, and occasionally even later.)
"When I bring them …[…]… a dry pair of socks, I feel like I’m doing so as a family member."
Socks. There are never enough clean dry socks. There are especially never enough socks in large sizes. When Grandpa dies, and the family cleans out his dresser drawers, they throw away his socks thinking “Who would ever want old socks?” The answer is homeless shelters and clinics that serve they uninsured/underinsured! Used socks are just fine. Wash them in hot water with a little bleach, put them in a bag (along with a note that they have been washed in bleach) and drop them off at a homeless shelter or inner city clinic. Thank you!!!
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My son got a lot of help immediately at 18. Maybe it made a difference? Not sure.
I am just incredibly grateful that he understands he’s ill and accepts help willingly. This next week marks two years since he was last in a hospital. He is really settled and stable now. But he’ll never be able to hold a job.
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This is an area where I wish our society would do a better job. Because there are a lot of people (not everyone of course, but a lot of people) on disability who want to work and who can work in a limited capacity. Even just once a month for a couple of hours on a drop-in basis. A place where, on a day that you were feeling better, you could show up and they would find you something to do. And then they would pay you some small amount for your hours worked when you went home. This would get people out of the house, provide some structure and a feeling of accomplishment, and also give an outside person (the people running the workplace) a chance to lay eyes on you and make sure you are doing ok that day.
I mean I think there are a few places that do some of these things, but not enough.
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My son had the perfect opportunity. In a factory, for just a few hours at a time, on his schedule. He had an employee shadow him and help him.
The factory owner happened to be one of the dads in DS’s Boy Scout troop. He has had this program in place for disabled people for many years, and it was a bonus that he and DS already knew each other.
It actually worked for about a year, but then DS got too stressed and quit. This is his pattern. He tries an activity for a few months and then quits. Believe me, we’ve tried MANY things. It’s unbelievably frustrating. I know that it’s part of the illness, but ugh. I could relate to the author of the article talking about his brother’s world shrinking, because that’s exactly what happens. At least, the housing staff where DS lives makes an effort to get him and the others out on a regular basis.
Just before COVID, I participated in a panel for caregivers run by a pharmaceutical company. They had developed a drug to combat the negative symptoms of schizophrenia (meaning lack of motivation and flat facial affect, among others). They wanted to know how to motivate ill people to be part of a study of the med. Talk about Catch-22! They were trying to get unmotivated people motivated enough to participate in a study about drugs to motivate them. Then COVID happened, so I don’t know if the drug went any further.
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Yes, we have so many meds that are decently effective for schizophrenia’s “positive” symptoms (e.g presence of hallucinations, presence of delusions, presence of paranoia), but almost nothing that works for schizophrenia’s “negative” symptoms (lack of motivation, lack of social drive, lack of energy, lack of concentration.)
And those waves of doing better…and then doing worse…that can be so much a part of the illness. Ugh.
I really hope there will be a breakthrough in the science.
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Unfortunately, most of the meds available a year or so ago when I stopped working as a therapist with many clients with serious mental illness had pretty awful side effects. It’s pretty easy to assume that’s why many people with these illnesses (especially homeless and marginally housed people) stop their meds once they feel better. Certainly the meds of 2023 were better than those of an earlier generation. I have read some about better meds and treatments on the horizon. Lots of info on the substack of a psychiatrist in Brooklyn named Owen Muir. It’s called The Frontier Psychiatrists.
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I will check him out!