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I have been a caregiver for my son who is 32 now for last 11 years who after is 21 birthday was diagnosed a disorganized schizophrenia.  I am a single mom who at the time new nothing of the disease, and was told by one psychiatrist that he was depressed, while he was calling his brother the devil and the dogs spies. 

 

Finding a new psychiatrist and spending the first 3 years finding the correct meds, which had all kinds of side effects, checking out all of the local facilities for support or some place to leave him during the day while I worked has been challenging.  Got through all of this barely only to again trying to find the right medication because the one that worked no longer works.  

 

We are on the last medication to try, and the side effects of the antipsychotic meds all these years which has giving him  permanent tardive dyskinesia.  Oh yeah, after 3 years being diagnosed he also developed severe RA.  

I am writting in this forum to hopefully to talk to someone that knows what my days are like.  When people at work asked me hows my son, I telled them fine, because to explainn to them that when I go home I have to check to see what he has done alol day because he will not leave the house due to his paranoia.  I have to cook and clean because he cannot do any of these things he used to due before his 21 birthday.  My beautiful son is in pain, the voices dont stop. the haullications dont stop and I have tried all that I could try.  

I have never hospitalized him nor will I ever, he is not angry, nor aggressive his is 32 and has a mind of a 15-year-old. trying to find things, groups, support groups or someone just like him to talk to is impossible.

I am alone and I hurt to see him hurt.  

 

I will say that it has help me a little to write all of this down to people I do not even know, maybe someone out there is experiencing the same.

If anyone out there is interest in the rest of my story let me know.

 

I LOVE you my SON.

AARP Expert


@lp52197114 wrote:

I have been a caregiver for my son who is 32 now for last 11 years who after is 21 birthday was diagnosed a disorganized schizophrenia.  I am a single mom who at the time new nothing of the disease, and was told by one psychiatrist that he was depressed, while he was calling his brother the devil and the dogs spies. 

 

Finding a new psychiatrist and spending the first 3 years finding the correct meds, which had all kinds of side effects, checking out all of the local facilities for support or some place to leave him during the day while I worked has been challenging.  Got through all of this barely only to again trying to find the right medication because the one that worked no longer works.  

 

We are on the last medication to try, and the side effects of the antipsychotic meds all these years which has giving him  permanent tardive dyskinesia.  Oh yeah, after 3 years being diagnosed he also developed severe RA.  

I am writting in this forum to hopefully to talk to someone that knows what my days are like.  When people at work asked me hows my son, I telled them fine, because to explainn to them that when I go home I have to check to see what he has done alol day because he will not leave the house due to his paranoia.  I have to cook and clean because he cannot do any of these things he used to due before his 21 birthday.  My beautiful son is in pain, the voices dont stop. the haullications dont stop and I have tried all that I could try.  

I have never hospitalized him nor will I ever, he is not angry, nor aggressive his is 32 and has a mind of a 15-year-old. trying to find things, groups, support groups or someone just like him to talk to is impossible.

I am alone and I hurt to see him hurt.  

 

I will say that it has help me a little to write all of this down to people I do not even know, maybe someone out there is experiencing the same.

If anyone out there is interest in the rest of my story let me know.

 

I LOVE you my SON.



@lp52197114 wrote:

I have been a caregiver for my son who is 32 now for last 11 years who after is 21 birthday was diagnosed a disorganized schizophrenia.  I am a single mom who at the time new nothing of the disease, and was told by one psychiatrist that he was depressed, while he was calling his brother the devil and the dogs spies. 

 

Finding a new psychiatrist and spending the first 3 years finding the correct meds, which had all kinds of side effects, checking out all of the local facilities for support or some place to leave him during the day while I worked has been challenging.  Got through all of this barely only to again trying to find the right medication because the one that worked no longer works.  

 

We are on the last medication to try, and the side effects of the antipsychotic meds all these years which has giving him  permanent tardive dyskinesia.  Oh yeah, after 3 years being diagnosed he also developed severe RA.  

I am writting in this forum to hopefully to talk to someone that knows what my days are like.  When people at work asked me hows my son, I telled them fine, because to explainn to them that when I go home I have to check to see what he has done alol day because he will not leave the house due to his paranoia.  I have to cook and clean because he cannot do any of these things he used to due before his 21 birthday.  My beautiful son is in pain, the voices dont stop. the haullications dont stop and I have tried all that I could try.  

I have never hospitalized him nor will I ever, he is not angry, nor aggressive his is 32 and has a mind of a 15-year-old. trying to find things, groups, support groups or someone just like him to talk to is impossible.

I am alone and I hurt to see him hurt.  

 

I will say that it has help me a little to write all of this down to people I do not even know, maybe someone out there is experiencing the same.

If anyone out there is interest in the rest of my story let me know.

 

I LOVE you my SON.


You've received sound advice. I have another thought to add. Do you a NAMI chapter near you? You can find a chapter in your state of the wonderful group, National Alliance on Mental Illness, at https://www.nami.org/Find-Your-Local-NAMI.   I have a friend wo went to hell and back for her son, and she found that group supremely supportive and helpful. He is doing better than your son is, but still, those years were hard. The local chapter should know about what is available. 

 

I also wonder about the local mental health center. I work in one here in Oregon. We have case managers who can do home visits. Sounds like he needs checkin up on and some stimulation besides just you and computer/TV. Just another thought.

 

I'm so glad you wrote. Do any of these ideas help you? Please write more?

 

With you and him in my prayers,

Jane

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AARP Expert

Dear LP,

 

     I'm so sorry for the plight that has befallen you and your son. Schizophrenia is an awful disease which can be extremely difficult to manage over time. I have several clients currently who are in your situation, caring for children with severe and persistent mental illness. All of them, like you, feel terrible anguish as well as bewilderment about how best to help their children.

 

     Here are several suggestions for how you might proceed.

 

     The National Alliance for Caregiving just put out a guide for mental health caregivers that may have some helpful ideas for you:

 

http://www.caregiving.org/wp-content/uploads/2017/11/CircleOfCareReport_Final_WEB.pdf

 

     In my work with mental health caregivers, I am always looking for ways to maximize the independence of the person afflicted with the disease. That often means that I am encouraging the caregiver to consider exploring residential or group home living for their loved one even if that loved one is against the idea. In the best situations that I've seen, the parent comes to believe that it is better for their child to live apart from the family in order to receive both more intensive treatment and to learn to live their own life. Most parents initially feel guilty and fearful about the prospect of such a move. You likely would as well. That said, I still think it is worth exploring for your son's sake.

 

     Your son has been very fortunate to receive your comfort and care. What would be the next step for him to move forward in his life and to allow you to focus on yours?--Barry Jacobs, co-author of AARP Meditations for Caregivers

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I'm so sorry about your son because we as mothers want to protect them from everything within our power to protect them from. My son died in 2004, from Aid's related pneumonia and I miss him so much. I know how hard it is on the loved ones who must care for family members who are sick. I would do the same as you're doing for your son because you love him and it hurts you to see him like that. I will pray for him and you also that God gives him clarity of mind and you peace, don't give up on finding help for him. You be strong and take care of yourself too becasue if you get overly stressed and make yourself sick, who will take of your son? I don't know if you believe in God, but read the book of Psalm to get some relief.

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