What should I do if assisted living facility won't house my sister because of primary diagnosis of schizophrenia?

Many people on this board are caring for loved ones who have dementia. Most of us have run into unfounded assumptions based on that diagnosis. When my husband was hospitalized for a few days the nurse assigned to him said, looking at his chart, "Oh. Lewy Body Dementia! That's the one where they are violent, right?" I told her that some with LBD probably did have that as a symptom, but Coy wasn't one of them. She happened to be on duty when Coy was discharged. She said to me, "I'm so glad I got to see an example of a person with dementia who is a real sweetheart."

But at least there are several residential options for persons with dementia.

The stereotype that people with schizophrenia are a dangerous risk is deeply embedded in our social consciousness. There is no doubt some basis for this fear. But it is an extreme disservice to treat all people with this diagnosis based on a stereotype. I don't suppose the better ALs you've found would consider a written evaluation from her psychiatrist? This is so frustrating!

I hope you find a good place, and that it isn't inconveniently far from you. Meanwhile, is there anything you can do at the current place to overcome some of the low standards, at least for your sister? If they don't offer good and meaningful activities, can you arrange for her to go to concerts/plays/museums -- whatever would suit her interests? And if you can't go with her yourself, would you consider hiring a companion for several hours each week for these outings? Of course you should not have to make up for the low standards of the facility, but I see how much you want to improve your sister's conditions.

I have not seen this exact problem posted here before, but many caregivers have similar struggles. Would you mind coming back periodically and let us know your progress?

I'm wondering if her doctor switched her "primary" diagnosis to osteoporosis...they might at least take a look at her stellar record and meet her in person.

Hi, thank you for the responses. To JoAnn, I understand your point (and the concerns of AL's) regarding the larger mentally ill population and possible episodes, but my sister does not have episodes. I would like you to know that a mental illness diagnosis does not make one a candidate for a nursing home. She does not require any nursing care; just cooking and cleaning. She is already in a regular 'ole AL and no, she is not a risk to the other residents in any way. She is just on some very low dose of medication that stabilizes her anxiety. She does receive Medi-Cal. She has disability. She does have a social worker. I'm really just looking for assisted living housing that is better than the one she is at. She is too old for the facilities that specialize in only mental illness. She is a delight to be around, she does not manifest any obvious symptoms of mental illness that would affect other residents. I'm really asking if anyone has had similar experience in placing someone with this situation / diagnosis. There are no group homes for her diagnosis in the area. There are many group homes for people who are overcoming drug addiction. She does not qualify for that, of course. Its very frustrating. I appreciate your kindness, Jeanne. It's true, there are few options. I am willing to pay higher rates for AL living. The money is not as much an issue for me as finding a place that will not discriminate against her diagnosis. Thank you Barb for NAMI suggestion - I will connect with my local chapter. It's been a while; they will at least sympathize if not have some resources.

My heart goes out to you, and to your sister. As a society we really have very poor options for this kind of care. A small group home sounds good, if there are any available in your area.

Is Sis on disability? Does she have a case worker? If so, that might be a good resource to talk to.

I certainly hope this can be resolved satisfactorily.

Are there group homes? That's usually the sort of facility that does this care level. Have you contacted NAMI?

You need to understand that ALs are not equipped to care for people with your sisters mental iillness. There is usually an RN and a few CNAs. They are limited in the care they give. They also have to consider the other residents if ur sister has an episode. You may need to consider a nursing home. If sister has no money you maybe able to get Medicaid.