Expert: Libby Bonner - 10/7/2003

Question
Dear Libby,

My sister was diagonosed as schizophrenic and bipolar about 8 years ago, she was in her early 30's.  Since that time she has been faithful with keeping current on her medications and keeping in touch with her psychiatrist. She has managed the medications well, but the behaviour issues are ignored and the illness used as an excuse for bad behaviour.(Ie, lying, manipulation primarily)

My parents and I disagree at just what we should or should not be doing for her and her 2 sons (ages 14 and 10). She is now getting disablity, food stamps and child support, but pays none of her bills. My parents are buying a house in which she lives, they pay all the utilities, put my nephew through private school, and my mother will "sneak" money to her when she goes on a spending spree and runs out of money for necessities, like food. This my parents do out of a sense of responsiblity...this is their child. Unfortunatly, she is not learning daily life skill such as money management, hygiene, housekeeping etc, this will all come to a head when the day comes that they cannot support her.

Both of my parents are in their early 60's with my father having severe ruematoid arthritis, so they have a lot on their plate as far as his health and daily care is concerned. In one year (2000) he underwent 11 surgeries, including a broken neck, amputation of a leg and a pericardectomy and being fed through a stomach tube for 6 months. When the day comes that my father does die, my mother will no longer be able to support my sister financially. To add to this, she is will not take responsibly care for the house, and when the time comes for her to leave she will leave thousands of dollars in repairs needed just to get the house sellable.

In conjunction with this, her boys live in a squaller, there is dog feces downstairs, one when I did go over to help her clean, there was feces in the washing machine, this is beyond dirt, it is totally unhealthy.

I have spent hours on the internet seeking what families of schizoaffective siblings/children should be doing to support the ill family member, to be as self sufficient as possible.  At what point do we "take over" her finances, or remove children from the home.  And what are the long term affects of children being raised by a single schizoaffective mothers, and what as family, can we do for these kids?

Can you please give me some suggestions at how we can help my sister to manage the day to day function of life, and refer me to web sites that will back this up? Or is this total dependance a normal situation for a schizoaffective?

Unfortunately, we dont have a very good support system in this area. the one center she did go to, wanted to run her finances, not teach her to do so, they do not do any sort of serious training, the way it has been discribed to me is that it is a single hang out for schizophrenics, no a place for support or training.  

Answer
Well.  Big problems.  And having only one center available is a problem.  

We need to talk and we can't, so:  go to www.nami.org and see where your nearest NAMI affiliate is.  Go to meetings if the distance is reasonable at all.  If they are not running a support group, ask for phone numbers of people willing to answer some questions - about her, about typical schizoaffective pts, about services, about coping.

IF you can take NAMI's free 12-week Family to Family class it would be the very best thing you could do.

Also: get the 4th edition of Surviving Schizophrenia, the bible on this subject, and get the Woolis book called When someone you love has a mental illness. Both will help you answer some of the Qs you have asked me and will help also you communicate w/ her.

Training, as such, is not very much a mental health center's role.  However, if they now have a PACT team [mught have diff name where you are, but they will understand], that might be v helpful in monitoring the home and encouraging change.

Pls realize that she may not BE able to handle money, ever.  Having a family or other payee if often done, w/ just a small discretionary amount doled out to the patient.

Who could be the boy's guardians?  or take custody of them? and is she willing that this should happen?

Am wondering about this house that's being bought.  I understand why, just wonder if there might have been a better way to use the money.

I would urge you to get connected w/ NAMI, however you might have to sacrifice to do it. And I would certainly make an appt w/ the center that you mentioned to go and ask - or ask again - what the range of their services is.

---Consequences to the children?  Huge and forever. Very, very negative - tho probably not as bad w/ mother/sons as w/ daughter,  mothers not being role models for opposite gender children.

Assuming that the boys have some other place that they are welcome, it might be a less explosive deal if this is done informally so that she does not officially lose custody.  Explore guardianship - of her, of the boys - perhaps. Then it would be fine if she could move into some sort of supervised and subsidized housing.... in an ideal world.

Hope you and your mom can both take Family to Fmily.

Write again if I can help.

PS - just re-read my answer: if her moving to a county w/ better services would work at all, do consider it.

PPS - was she at one time a good housekeeper?  If she's taking meds faithfully, it's possible that she needs different meds or different doses.  Her illness will always cause her to be different from the person she was before, but well-controlled illness would - I'm guessing - allow her to assess her situation better and want to, and be able to, do a little better.  --and, to some extent, the clear expectations of others may help her.  The two books that I mentioned will help you here.

Schizoaffective pts do have different medication needs and probably bumpier lives than 'plain' schizophrenics.