Where can a schizophrenic live?
September 29, 2006 12:02 PM   Subscribe

Where can a schizophrenic live?

A highly-functional schizophrenic, my girlfriend's mother lived independently for years. But this year she's taken a turn for the worse and has spent time in a hospital ward, a nursing home, and an "independent living" place.

Problem is, the hospital is a nuthouse, and the nursing/independent living places are for the old and infirm. She really doesn't belong in them. She actually ran away from the independent living place.

She doesn't live close to family, so what she requires is a live-in (inpatient) facility that's tailored to the needs of highly functioning, compliant mental patients. If that sounds easy, guess again.

If anyone knows of a place that fits that bill, or a resource we should be aware of, thanks in advance for sharing.
posted by subpixel to Society & Culture (23 answers total) 1 user marked this as a favorite
 
you need to look harder in the nursing home/independent living scenario. there are facilities out there that will cater to the younger chronic mentally ill crowd ... i worked at one for a while quite a few years ago. they are no picnic, and it's likely your girlfirend's mom is still going to run away, but if you keep at it, it might stick.
posted by lester's sock puppet at 12:12 PM on September 29, 2006


You should be able to figure out the range of available options by contacting the following agencies (I'll give you Brooklyn or New York because of your profile, but you can find these agencies in every region): Brooklyn Center for Independence of Disabled; NAMI, and the New York CQCAPD (which is apparently the New York State P&A agency).
posted by ClaudiaCenter at 12:19 PM on September 29, 2006


My grandmother is also has schizophrenia. We've stuggled with the same problem and come up empty. She's currently living in a nursing home full of people who are very sick phsyically (she isn't) and who can't provide any companionship or mental stimulation for her. It's frustrating and upsetting. I, too, would love to find a good solution.

Unfortunately, no good advice here, just sharing the pain.
posted by raedyn at 12:22 PM on September 29, 2006


PS I know this may come off as language police-y, but it makes me wince a bit to hear a person referred to as "a schizophrenic." Consider: "Where can a person with schizophrenia live?" or "Where can a person with a serious mental disability live?"

And I absolutely know that what you're looking for is not easy to find. I hope something turns up for you all.
posted by ClaudiaCenter at 12:36 PM on September 29, 2006


FWIW, I had the same wince that ClaudiaCenter had. You'll notice that I started to say "my grandmother is also schizophernic", then stopped myself to say "has schizophrenia".
posted by raedyn at 12:43 PM on September 29, 2006


Where do you want the facility to be? Near you, or in her present location (which is where?)?
posted by LobsterMitten at 12:50 PM on September 29, 2006


There's a lot of interest lately in figuring out how to help people with mental illness continue to live in the community, rather than in institutions. The benefits to being in the community are obvious, but the key is figuring out what kinds of supports are needed for a particular person to make that happen. This has been a particularly hot issue since the Olmstead decision, which established that people with mental disabilities MUST have access to supports that allow them to remain in the community as part of compliance with the ADA.

One project I worked on a few years ago looked at the concept of home care (or personal assistance services) for people with psychiatric disabilities. The way this works is to figure out what your girlfriend's mother needs that she can't reliably do for herself - for example, does she needs help remembering to take her meds, or someone to help her organize her day - well, how about hiring someone to drop by her house and help her do those things? This is exactly what we'd do if the person had a physical disability and needed help getting out of bed, or bathing.

It's so much cheaper than putting her in an institution, and she certainly benefits from being able to live in the community.

The big question will be what state/city she lives in, since the service sectors are far more developed in some areas than in others. But there may be options in her state that are built into her state's Medicaid plan.

A few research centers that might help you begin your thinking about all this - one is at Boston University, the Center for Psychiatric Rehabilitation. Another, at Penn is called the Collaborative on Community Integration. Here is a link to UPenn's page on Housing issues.
posted by jasper411 at 12:54 PM on September 29, 2006


Have you talked to the Fountain House folks?

FWIW, I had the same wince that ClaudiaCenter had.

Thirded

posted by squeak at 1:21 PM on September 29, 2006


You'll notice that I started to say "my grandmother is also schizophernic", then stopped myself to say "has schizophrenia".

Huh? I'm missing something...
posted by dagnyscott at 1:25 PM on September 29, 2006


There's a lot of interest lately in figuring out how to help people with mental illness continue to live in the community, rather than in institutions. - jasper411

Lately? Haven't they been trying to do that since the 70's at least?
posted by raedyn at 1:25 PM on September 29, 2006


You're right raedyn - There has been a lot of interest in this for a long time. The difference is that Olmstead represented a decision by the Supreme Court that addressed this as a civil rights/discrimination issue, and tied it into the ADA which, though constantly under assault, articulates well-established doctrines about inclusion.

dagnyscott - this is what's called "people first" language, which believes that everyone is a person before they are a condition. So rather than "the schizophrenic" or "the disabled person" you say "the person with schizophrenia" or "the person with a disability." Some people think this is a good thing that helps people get clear in their thinking, others think it's just more PC hoops to jump through.
posted by jasper411 at 1:34 PM on September 29, 2006


Deinstitutionalization made this better for some folks (opening up the 'nuthouses' and letting the highly functional people out) but worse for others, namely those whose disabilities didn't let them fly in the modern world.

The buzzwords to check out include "group home" and "community-based living." Depending on where your gf's mother lives, the resources could vary from excellent to nonexistent. The best resource for learning more is to talk to a local psychiatric social worker, who could probably be reached care of the local inpatient psychiatric unit.
posted by ikkyu2 at 1:47 PM on September 29, 2006


Why can't she live with your girlfriend?
posted by poodlemouthe at 2:01 PM on September 29, 2006


I can't imagine that it's too great that she doesn't live near family. I second poodlemouthe's question: can she move in with family? I'm not too well-versed on the care of schizophrenia-sufferers, but it seems like being with a loving family would be one of the best options.

(Of course, the other half of the question is: "How adversely would doing that impact your life?" If it'd make your life a living hell, I can't fault you guys for not doing it. And of course, whether or not you guys are ever home.)
posted by fogster at 2:21 PM on September 29, 2006


The key thing to finding a good home situation for schizophrenics (which I use unashamedly and frequently to describe my brother), is the degree to which their symptoms can be alleviated by medication, and whether they are able to remain medication compliant, by themselves. Most schizophrenics do not, by themselves, remain medication compliant over time, for a variety of reasons, and for some, no current drugs exist which adequately manage their symptoms well enough that they can be considered good candidates for self-care. For many, simple temporary problems like a bout of flu related diarrhea is enough to upset their absorption of meds to the point they become very confused in their thinking in a matter of as little as 24 hours, and are then unable to accurately self-dispense the very medications they need to remain in a previously successful living situation.

I mention this particularly since you say that your near-relative "ran away" from an independent living facility, which is a common sign that her condition was not well managed at that point, and that she may have experienced rational fear, or irrational paranoia about that situation, great enough to make her want to leave. So, a lot depends on the exact situation with her medications, and with her history of medication compliance. Most people who live with schizophrenia for long periods, live with family, simply because the long term commitment to managing a complicated condition, which is controlled by powerful medications, and which can change quickly for many reasons, requires some dedication and patience, which are hard to hire at all, and pretty expensive if you can find it.

But sadly, some of the independent living situations I've visited in looking for options for my brother are not places I would feel safe about laying down to go to sleep, myself. You can't judge such things so easily on a single visit, either. You have to learn to see the world as the confusing, stressful place a schizophrenic does, and you have to look at all inputs they would get in any given situation. One of the things that was problematic for my brother about several situations we looked at, was the public transportation services available, which he would need to get to his monthly doctor's appointments. Although it seems innocuous to a normal person, on a bad day, the people who ride special needs transportation can be very frightening to my brother, and through stimulating his paranoia, precipitate problems he wouldn't otherwise have.

What argues in your near-relative's favor is that she once was what you describe as a highly functional schizophrenic, which may argue that her recent overall condition may be due to underlying organic changes, which can be successfully treated, returning her to a condition when she can resume effective self-management. That's an important distinction to understand, since for many people, agreeing to a living situation with an expected temporary term, even if that term is months or more, is easier than assuming an open ended responsibility that has no term.
posted by paulsc at 3:03 PM on September 29, 2006 [1 favorite]


Not to derail but there was a study where they asked people to free associate given phrases. They would give one person a phrase such as "a schizophrenic" and another person "a person with schizophrenia" and asked them to describe what they felt. Somewhat shockingly when used in the un-PC manner the connotations were generally all bad (e.g., "crazy", "dangerous", etc.) while the connotations for the so-called "people first" version were neutral to good. So there is scientific data to support that people's perceptions change based on the way the language is presented.
posted by geoff. at 5:20 PM on September 29, 2006


Some people think this is a good thing that helps people get clear in their thinking, others think it's just more PC hoops to jump through.

More the former than the latter for me, I don't think of schizophrenia as a bipedal mammal with opposable thumbs (I think the distinction matters and no I'm not PC by any stretch of the imagination).
posted by squeak at 5:46 PM on September 29, 2006


"So there is scientific data to support that people's perceptions change based on the way the language is presented."
posted by geoff. at 8:20 PM EST on September 29

Cite? Sociology is science only in some circles.

"(I think the distinction matters and no I'm not PC by any stretch of the imagination)."
posted by squeak at 8:46 PM EST on September 29

The distinction will matter far less if you have the misfortune to meet my 6' 250 lb ex-Army brother, unmedicated, in a parking garage late some night. Particularly if he thinks something you said is you trying to transfer your fear demons to his immortal soul.

Otherwise, on his meds, he's a sweet, gentle guy, who never complains, and said, when I just asked him, that he doesn't care at all how people describe his condition. Actually, he said "I think they're all a little nuts."

Funny guy, my brother.
posted by paulsc at 6:04 PM on September 29, 2006


If your girlfriend's mother lives near Boston, I could recommend a couple really good agencies that provide (or help secure) transitional and supportive housing. I used to work for a program that helped with the housing costs for people with disabilities. A few of the agencies I worked with did a great job of helping their clients find independent living situations when they were ready, while continuing to provide support and a safety net if they later needed to return to a more supportive environment. If she's in Boston, my email's in my profile.
posted by sophie at 6:21 PM on September 29, 2006


The distinction will matter far less if you have the misfortune to meet my 6' 250 lb ex-Army brother, unmedicated, in a parking garage late some night.

Although I brought up the language issue, I am not a hard liner on such matters, and often break various "rules." But I would want the armed police officers responding to the parking garage to have a "person" in mind -- less lethal.
posted by ClaudiaCenter at 7:22 PM on September 29, 2006


"... But I would want the armed police officers responding to the parking garage to have a "person" in mind -- less lethal."
posted by ClaudiaCenter at 10:22 PM EST on September 29

And if it would cause those officers to act with one whit less apprehension or force, or any greater understanding, when they responded, I'd take your point, as would my brother, when listening to his better angels. But hard experience says that mostly, they want the irrational to be rational, and brook little arguement, regardless of what incident descriptors are provided them, or the capacities in the moment of those they find. Can't blame 'em really.

But language is a poor thing, when reason and fear meet.
posted by paulsc at 9:01 PM on September 29, 2006


But language is a poor thing, when reason and fear meet.

Agreed. And as to this thread, I certainly tip my invisible hat to your intensive, real-world experiences with your brother, and your thoughtful suggestions re finding housing.
posted by ClaudiaCenter at 3:10 PM on September 30, 2006


But language is a poor thing, when reason and fear meet.

Though it isn't about whether your brother (or my uncle or millions of others) have a problem with the terminology. It's about turning their actions into symptoms of a disease and then referring to them as if the sum of their being is schizophrenia. We all know what can happen when we dehumanize, objectify and render others as somehow inferior to us - it makes it easier to avoid treating them as well as they should be treated.
posted by squeak at 9:09 PM on September 30, 2006


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