How to support my family while my sister recovers?
August 19, 2011 2:56 PM   Subscribe

My sister just got out of the hospital and I want to offer my family some support. Need suggestions and insights.

My sister had her first psychotic break about ten years ago, when she was about twenty. She was initially diagnosed bipolar, then schizophrenic, and put on a lot of medicine. She decided to stop taking her medicine about a year ago. I was very wary about this, but my mother is her primary caregiver, and my mother said she was monitoring the situation. We live at extreme opposites of the country, so I didn’t feel like it was my business to muck around and give suggestions when I am not in the reality of the situation on a daily basis. My sister was living with my mother then.

My sister made tremendous strides. Previously, she was kind of monosyllabic and unmotivated. She lived on and off with our mother, holding down occasional jobs and apartments for no more than a year. But during this period when she was off her medicine, she became suddenly very interested in life. She began to talk more, would actually seek out conversations with us. She decided to go to a trade school and completed a technical certificate. She also quit smoking, something we never thought she would do. It seemed like a glorious thing. Although, like I said, I was just hearing about all of this through the phone. But I thought if it was even ½ as amazing as it sounded, it seemed terrific.

My sister decided she was going to find a job with her certificate, and even though I am, again, uncertain of how this happened, she ended up living with a sick relative of ours. It’s almost laughable now how terrible of an idea this was, but I guess my mother felt that my sister had recovered enough to where my mother could finally have a break from caregiving. Plus, where our relative lives is a much better place for jobs and there is actually more family in that area to support sister.

I was pretty puzzled about the decision at the time, but again said nothing because I felt my mother deserved a break and what did I know? The situation went pretty badly, however, because I guess very sick person + schizophrenic person alone in same household is not a recipe for great mental health. My sister ended up having another break, a pretty bad one, and she was admitted to a psychiatric hospital for the first time. They wanted to keep her there for several weeks, but because of another family situation, she got about a week and a half of treatment and then was released. The doctor said it would take four weeks before my sister was functioning at a somewhat normal level again.

She is at home with our mother now. My mother says my sister denies she is even ill and they have fought about some restrictions my mother has placed on my sister. My mother suggested some sort of activity place for my sister to visit during the day while my mother is working, but my sister says she got hit on in one of those places and she doesn’t want to be around those people.

I’d like to be more involved in the situation now, but I have no idea what to do or suggest. I’ve told my mother she should contact the doctor who treated our sister if she is having concerns. I reminded my mother that she took my sister out of the hospital early, and that the doctor said she is not well yet. I also encouraged her to get in touch with my sister’s father, who is not exactly estranged but is also not exactly involved in the situation. I offered to get in touch with him, as well. My mother has business meetings out of town all next week and doesn’t know what to do because she can’t leave my sister alone.

My mother wants me to move back home. I really don’t want to do that. I’m in my late 20’s and am wanting to study overseas next year and have been cultivating that plan for awhile. I would check in with my sister and support in any way I could. I’d call her everyday. I have no clue what to say, though.

My questions are:

1. Do you have experience with a schizophrenic family member? What was that experience and can any of the wisdom you have apply to my situation? I’ve read some previous questions already on the subject.
2. YANAD, but what kind of care does my sister need now? She just got out of the hospital and I feel like she needs some sort of continuing treatment, but I don’t know. I read in the book “Surviving Schizophrenia,” that talk therapy is detrimental to schizophrenic patients, but it doesn’t seem right for her to have nothing except a medicine check-up. I’ve contacted my mother’s local NAMI affiliate and am waiting for a call back. I don’t know what I’ll say to this person other than talk about the situation and ask for advice.
3. My mother said when a schizophrenic has an episode, it causes brain damage. Is this true?
4. What are good resources, books, etc?
5. If I call my sister to my support her, what kind of things do I say? I feel scared to talk to her because I don’t want to make it worse.
6. Any advice as applicable…
posted by amodelcitizen to Health & Fitness (3 answers total) 2 users marked this as a favorite
>My mother wants me to move back home. I really don’t want to do that.

Don't do that.

A friend's son suffers from schizophrenia, and she's found great assistance at NAMI. Memail me if you like and I'll see if she's open to discussing this with you via email. Good luck.
posted by cyndigo at 3:46 PM on August 19, 2011 [1 favorite]

I have a sister who has schizophrenia. I also work for NAMI. The most important thing in schizophrenia is the meds. Unfortuately, your mom is right in that when someone with schizophrenia has a psychotic episode and then gets back on their meds, their brain doesn't go back to 100% - there is some damage that is done each time. That's why it's so important for them to get on the right meds and stay on them.

Unfortunately, about 50% of people with schizophrenia have anosognosia (lack of insight), where they literally don't know they have an illness. This is one of the main reasons that they will go off their medication - they just don't think they need it.

I would encourage you and your mom to read I am not Sick, I Don't Need Help -- it's a book written by a psychiatrist whose brother had schizophrenia, and it's a way of interacting and talking with them that is helpful -- it's really helped my mom with my sister.

The other thing I'd really encourage both of you (but especially your mom as she's living with your sister) is to attend a NAMI Family Support Group - you'll get lots of info and support on how to deal with the situation and take care of yourselves. There's also a wonderful course called Family to Family which will equip both of you with tons of information about the illness, medications, communication with your sister, self-care, etc. People say it's changed their lives, knowing how to deal with their family member.

I would also encourage you not to move home - encourage your mom to get help from NAMI (and again, I'd encourage you to seek out your local affiliate also). You can find your affiliate here.
posted by la petite marie at 4:13 PM on August 19, 2011 [5 favorites]

Is it possible for you to go home for the week when your mother needs to travel? That would give you a chance to reconnect with your sister, get a better sense of how she is doing and give you a better basis for staying in touch when you go back to your own home.
posted by metahawk at 11:00 PM on August 19, 2011

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