I am Desperate for answers !!!

Hello softhart,

You are going through a lot right now and I understand your concern for your son and the new route of drugs and treatment for the schizophrenia.  It is indeed possible for someone to have epilepsy and schizophrenia at the same time as I used to know someone who did many years ago.

I would maintain a warm home and refrain from arguing or fighting in front of your son when things get hard. I am not saying you would do this, it's just that I myself was greatly affected by my parents' shouts and fights and possibly at some point you will feel like you're at the end of your rope, as the expression goes.

You will need a lot of support for what you're going through.  In the U.S., NAMI [the National Alliance on Mental Illness] has family support groups for people whose loved ones have mental illnesses.  Call their national hotline at (800) 950-NAMI (6264) to get the name and number of the local affiliate in your city or town that will host these weekly or monthly family support meetings.

A SharePost I wrote, though not directly related, may shed some light on delusions and you can read it here:  http://www.healthcentral.com/schizophrenia/c/120/31844/understanding

As things calm down with his paranoia, you may want at some point to suggest he attend a day program which is a daily outlet for people diagnosed with mental illnesses to get together for support, like art therapy and group therapy.  You will know from your own knowledge of your son if this would be something he could pursue.  The staff at the hospital or a local therapist might know the name and phone number of such a program.

The main thing is, your love and empathy and support which I'm sure you're willing to give generously and without fail, will make all the difference in your son's life.  It may be hard for you to believe, however some parents turn away from their children when they hear the son or daughter has schizophrenia.

So giving up hope isn't an option because there is hope that your son will be positively impacted by your love.  Love can make all the difference in his life and should not be overlooked as a factor in healing.

One thing I'm going to end with: some cities or towns, like Staten Island in New York City, have respite care.  Respite care is where someone, who may have a mental illness themselves, spends time with a person's son or daughter so the mother or father can do something like go to the movies or attend a yoga class.

You may want to pursue this option every so often so that you don't get burned out caring for your son 24/7, because I know this is a full-time job and I understand what you are going through.  You could access respite care as often or as little as you wanted and it also might benefit your son to have someone around he can be with or talk to.

Though his situation is different, you may want to read David Robbins and Carolyn's SharePosts.  I will ask other community members to post comments to your question because although we have different experiences, we can all give you hope and will support you in what you go through.

I'll close by suggesting you give things time.  I will try to research family guides to schizophrenia and report back on one or two titles that might be of help.  Of course the NAMI website will help too, www.nami.org

Regards,

Christina

Wow!  What a compelling and loving story you tell.  Tell us more any time.  It must be unbelievably difficult to have this loving, challenged child turn into someone you hardly recognize.  It is odd for someone to develop schizophrenia at his age.  I was diagnosed at 37, but I had been having symptoms for years that just slowly built up till I was floridly psychotic and really "over the edge."  I had to quit work and move in with my parents and am now 51.  I just moved into my own apartment.  I have tried twice, once in 1999 and once in 2006, and was unable to make it on my own.  But my dad died recently and my mom is 82 and not in the best of health.  Mom encouraged me to test myself now and try to live independently while she is still around to give advice and love and companionship.  So far, I have made it about 5 months.  I signed a 12-month lease so I am working toward that.  I was lonely -- my brother and sister have their own lives to take care of -- so I got a puppy.  But it was too much responsibility and I returned it to the human society after 5 days.  I know my limits and don't push them too far.

My situation is far different from your son's in many ways -- I got my college degree, worked in a challenging position of authority for 12 years, got married.  But then things changed drastically with my diagnosis and first hospitalization.  I have been hospitalized 18 times since then, the last time in 2002.  Very slowly, I am recovering with the help of an antipsychotic, antidepressants, anti-anxiety meds, and others.  I am on SSDI and doubt I will ever be able to work again.

I think Christina's advice was excellent about finding a day program where he could meet with others who have mental illness and have an opportunity to socialize -- that is a vital skill, although not easy to develop.  I tend to be a loner myself and mostly hang around with my mother, although I do go to church and I do volunteer work one day per month.

Find out all you can about schizophrenia.  There are many sites online that are instructive and informative.  You seemed to have helped your son deal beautiful with his handicaps of epilepsy and mental slowness.  I hope his psychiatrist can find the right meds to help him control the schizophrenia -- it makes such a big difference.  And don't be surprised if he has to try several before finding the one most effective for John.

It must seem so unfair that your son is afflicted with yet more suffering.  But there are many caring people at this site that are willing to help you any way they can.

Best wishes to you,

Carolyn

Hi,

Thanks for your email and request for a contribution. Having read your message and the responses you have already received I'm not sure there is more I can offer. The key ingredients were covered very well by Christina, who always offers very sound and well grounded advice. If I had to reduce the situation to two words they would be medication and support, and not necessarily in that order. These issues have been touched on.

I think I get the general picture and the limitations. Maybe the only thing I might add is (in a way you think might work) to discuss options and with your son so that he feels a part of the process that is happening around him rather than simply a recipient of it.