I hope that you get this..I am new to this site..I have a son ..he will be 40 10/3..He still lives at home with his Dad and I..He has been a special child all his life due to epilepsy with since the age of 26 month old left him mentally slow..To get to our new problem..About 8 weeks ago all of a sudden out of nowhere he suddenly became very moody and crying for no reason and hearing voices and also he must be seeing those he is talking to..As I said before he is slow..But when we ask him who he is talking to he will not say..all he will say is I don't know..Yet when all this first started he was thinking that the chinese had replaced his heart with a chinese heart and arms and hands..He thought we were trying to poison him with his epileptic meds he took all of his life..he was always a loving person..never any problems..always home with us...He has always been very peaceful and satisfied even in his limited life...he has this thing about his hands..always examining them...He prefers darkness rather than lighted room...he was always the oposite..so we do not allow him to be alone in the dark now...We took him to his nuerologist ..she advised admitting him to hospital for an extensive workup to rule out brain tumor and such..All checked out well..So now he is labled as schizophrenia..He became very aggresive when we tried to admitt him to hospital..we had no choice but to have the guards there retrain him to the bed until they did some testing and blood work..he was refusing to take his seizure meds which are tegretol, lamictal and phenobarbital...He had been discharged from hospital and now goes to a physciatrist for meds..which are ativan and risperdal...He hears voices most all the time..he hides things..he thinks others want to take his things..he says he is other people like Bruce Springsteen and a fireman..And I could go on and on but I won't now as I don't know how much space allowed..All this is very new to us..We don't know how to help him..He tries to get out of the house..We can not allow him due to all these problems and the doctors advise keep close watch..We have altered the doors and our sleeping patterns and our whole lives..We are very lost and tormented over all this..We need to hear from others that face the same thing ..Was happy to find this site and was hoping to find answers as well as comfort..The meds and side affect possiblities scare us..We love our son so very much and we don't want to lose him..Could you please tell us anything that may help or lead us to someone who can answer some questions and ease some of our fears maybe?.....Would love to hear back from you..Thank you and God bless you !!..softhart ( John's Mom )
Q: 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 Carolyn, I thank you so very much for having responded to my plea for help..It was very much appreciated..I am feeling so lost and so scared these days..Everything here in our lives has been totaly changed and it is almost like we are not the same people...And speaking of that I am reminded that everytime I turn around John is getting frustrated with me or his Dad for the simple mention of his name..In normal conversation and when requesting him to answer us or do a little task..We refer to him by the same name we have for almost 40 years called him " John"..Right away he tells us that is not my name..Something like My name is Bruce Springsteen or I am a fireman..This is what he seems to believe..Not all the time but most of the time..It is so heartbreaking to hear him say I am not John..And this causes friction between he and I because no matter how many times this happens, I am still not prepared for his response..And things that he never did before , like put the toilet seat up or down when he pee's is frustrating to me..or washing his hands and not turning off the water..And changing his clothes several times a day..It is all new...I don't care for anything anymore, I don't want to go out of the house..All my concerns are for John..I have to say that for all of his life he has been the main reason for my living..My whole life has been John..In all of his almost 40 years I have only spent 3 nights away from him and that was due to my being in the hospital..As I sit here and type my heart is so full and My eyes are so full of tears..I just want for my son back the way he was..He hand I have been inseperable for all of his life..That is what is making this so much more difficult for me and for his Dad also..I don't mean to cut him short..It is just that John and I have always been more close..I have tried to protect him all these years..He was special..he still is..only now it is like he is someone else...I have strong faith in God..and I pray and pray...And I am so scared with him being on all these medicines..He was on so much already..I don't know what is the best thing to do for him..The older psyc doctor suggested taking the risperdal from him and starting him on haldol..said maybe that will work better for him..But we had just given in to the risperdal..I researched and tried to find out all I could about the risperdal before we would agree to it as we understood it could interfere with his seizure meds..and all the serious side effects we read..God !! scares us to death...I have so much more I would like to talk about but not sure of space allowed here..But I am so thankful to be able to talk to you...Could you please tell me maybe what all you know about the different medicines for this and anything at all you can think of that may help me ..I do know that I am a basket case over all this and at the same time I have lost my temper with John with some of his actions..And I never ever did that !!! I don't think I am so much angry at him or things he does now as much as I am dissapointed and scared..He was not the way he normaly should be..But he was satisfied with his life as it was...As we all were...He is a very loving and most handsome young man..He was never a problem..only a blessing to me..I thank God for allowing me to be his mother..Please write back when you get the chance..I would be so thankful...And my name is Gail aka softhart
If you don't mind, I will respond to you by personal message. Be sure and watch for my response there.
Carolyn
Hello softhart,
You may want to log on to www.drugs.com to find out about various medications.
Also: that website has a feature where you can plug in the names of two or more drugs and find out what side effects could happen if you take all the drugs at the same time.
There is also a paperback: Consumer's Guide to Psychiatric Drugs by John D. Preston et al that tells you what drugs you can and cannot take with each other and gives you infor on the mental illnesses and the various drugs. It costs about $9 after tax.
Regards,
Christina
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.
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Hi Cristina. I thank you so very much for your response to my plea for help also...I ask you to please read my response to Carolyn if you would..Maybe save on my fingers for now..I am so very thankful for this site and for everyone that takes part and shows their concern for one another..Sometimes you feel like you are all alone in the world with all these heartaches and fears and then you look around and see that you are not...I have such compassion for people such as this..I will check out the sites that you recomended as well...You are a very considerate lady to share with others...I imagine that you have touched the lives of so many..Thank you and God bless you always...Gail aka softhart