Home, Diag Forum, About, Contact Us, FAQ

My son s illness is the main focus of my life


#21

Wow what a great story you told. So glad you guys are doing well, and you are taking care of yourself.


#22

I just read a bunch of yur blog thanks for sharing it.


#23

Hello. My son was diagnosed in 2003 when he was 23 years-old. Most of the time he is stable and complies to his medications. However, my son is not the same person as he was before. He used to be productive and had friends. Now he is complacent and has only one friend who my son sees from time-to-time. He is my only child so I focus much of my attention on him. I worry about his future and how well he will be able to take care of himself. Does it get easier as time goes on? I accept his condition and no longer look back to how he used to be. I focus on what he is capable of doing now.


#24

Acceptance is the key. It’s hard to think that because your son is doing much better, he should be able to shape up and get a job and be a normal person, but their not… So you have to appreciate what you do get from them and let go of expectations, that will only make you try and mold them to what you think they should be and love them the way they are, unconditionally.


#25

I think time does seem to allow us to learn from trial and error and we get smarter about communicating with our MIL ones. Time allows us to learn new coping skills IF we take care of ourselves. God bless you and your family. We know the pain you are experiencing but there is always hope.


#26

All positive stuff, glad he and you are doing ok.


#27

This forum is the best if it were not for all of you I don’t know how I would cope with my son’s illness.

He does nothing all day except smoke and listen to music and use drugs.
He has no interests and no friends and can’t drive because he lost his license and owes the city a lot so I doubt very much he will be able to get it back.

I try and live my life the best I can but my son and his illness are the main focus of my life.

My son was the best growing up he was bright, funny and great to be around and had friends, but in his second year of college all that changed when he was diagnosed. Then began the hospital stays, the drug use, the jail time.

Finding a place to live is difficult because he has a felony on his record. Right now he is in a transitional home. He was living with me but it did not work out because the management company found out he had a record.

I pray that his future will be brighter and that the drug use will stop.

I hope that the future of us all will be better. God bless you all for being on this forum.


#28

Hello. I am new to this sight. I am the mother of a 38 year old homeless and estranged from family. There is so much I want to say, but I will limit it to this at this time. My life will never be the same since I realized how sick my son really is. He was not taking meds and doesn’t believe anything is wrong with him. I have had him hospitalized 3 times. I too have mourned all he has missed out in life. The hurt is excruciating at times. My family can’t seem to understand why my constant thoughts are about him, where he is, is he taking meds, is he missing us…the thoughts go on and so do the tears. I finally found him after 3 years of no contact. After three 3 days of being with him, he physically hurt us. I can’t be angry with him, he just has no idea what he is doing. I just wish for a while that I would have a bit of what you have. I wish he was home, in his room and me being able to take care of him. I wish I could administer his medications and not have the fear that he could hurt us physically again. I wish I can tell you that it gets better. As long as he is medicated correctly and by your side, I pray that God gives you a sense of relief. Our hearts as mothers will always ache for them.


#29

Such pain and worry always, seem to be our lot with this illness. Thanks for reminding me that I am lucky to know he is here, counting blessings is so important.


#30

Have hope. My brother-in-law returned home after years, like 25, of living across the county, at times homeless and out of touch. One day, some guy he met paid for his ticket to take the Greyhound from California to NYC. They travelled together.

My mother-in-law got a phone call from her son asking to come home. She (a little reluctantly) picked him up from the bus station and brought him home.She said he looked like Grizzly Adams with a
giant unruly grey beard.

One year later, he is medication compliant, clean shaven, church-going (!), respectable member of society.:grinning: Even had a nice girlfriend You’d never guess his past.

He lived with his mom for the rest of his life, and was a great comfort to her. She previously lived alone, and he helped her w the house.


#31

I’m so sorry you are going through this. My son was diagnosed with schizophrenia 7 years ago. I think my Husband and I feel like our whole lives are about caring for him like you said you are. He has been on steady medication for a year now and we have our good days and rough ones. It does get easier to feel out when they start to go downhill and ways to help him through. Every person with Scz is different but I wish you the very best with your Son.


#32

Hope - Sounds like his mom is a narcissist. My husband’s mom is very similar. The world revolves around her at all times. I love her, but I am fully aware of her shortcomings. She can go from pleasant to full rage in the matter of minutes. I’ve seen her slap her husband (who passed a few years ago, God bless his soul for putting up with her all those years!) across the face several times. She took care of my son the day of his wisdom teeth surgery. He did something she didn’t like and she chased him around the house, hitting him on the top of the head with a large metal spoon. That is clearly not normal behavior from a loving grandmother. She undermined our attempts at discipline with our two sons, telling them to come over to grandma’s, giving them money when they were being punished by us, etc., etc. My son who is ill, she would send him $500 for no special occasion which he would promptly spend on pot and I would tell her what he spent it on, she still sends it. I tell her that it is not good for his illness and she doesn’t listen, still sends money. She tells him she’s sending the check, so he can beat us to the mailbox. Your husband sounds so very similar to mine. My husband is bipolar and I’m sure his mother is too. My husband has very negative thought processes. I think that comes from being belittled and criticized by his mother all those years. He always expects the worst in every situation. He is aware of this, but seems unable to change. He goes through periods where he questions whether I love him. It drives me nuts because we have a good marriage and I don’t understand why he is so insecure. He needs a lot of reassurance and praise. I feel like my cup runneth over!


#33

LisaS, your are right, my MIL did hit all the qualifiers for narcissism. She fits the description too well, it was stranger and deeper. She usually sat at her kitchen table with an array of makeup, nail products and a mirror. She would watch herself in the mirror while other people were talking - not just now and then - all the time. She had this big smile thing she would do. She would suddenly beam at someone and her whole face would light up. I thought it was the most fake expression I had ever seen, others would comment how beautiful she was when she smiled.

She used to tell her sons that I had said things about them that I never said. Eventually I stopped having any contact at all with her, it was too stressful to hear the stuff she was making up. I would tell her relatives when they wanted to confront me about things she said I had said "I have not talked to her, its all made up. Now I realize it was most likely voices. She self medicated heavily with alcohol and Valium in the early years, just cigarettes non stop and Xanax when she was in her 60’s and 70’s.

She would only want to hold the grandkids for pictures where she would bring out the big smile thing. She loved having her picture taken. We didn’t have to worry about her undermining our parenting, outside of having pictures taken with them, she wasn’t interested in the kids.

I never saw her in a rage, she was afraid of her husband, he had the rage issues. When he came home drunk and would be angry with her when my husband was a little boy, she would tell him that the little boys had done stuff that they had not done. In his drunken rage, he would switch from her and begin physically abusing the boys. Not only did she not protect them, she turned his anger towards them.

My husband shares your husband’s negative thought processes, mine is aware too and has tried to changed, I now wonder if change is not possible. Jeb’s illness has him questioning a lot of his own behaviors.


#34

My grandson is as and it was a tough road until we got him off drugs and on clozapine the miracle drug for him. Things are way better. It took years but he is actually working again. I have way more sympathy for families going through this now that I understand. My joy is back and we can leave him on his own now. My husband is not his blood grandpa but did his best. His parents woy ld of let him for on the street I couldn’t do that.anyhow it does get better


#35

I have to concentrate on my own life and I try to stay busy, otherwise I cry so much. I message him through facebook almost everyday and I am sad to see even texting is hard for him. I miss being able to have conversations with him. I want to tell him so much and I can’t. He really can’t handle too much talking.on the phone and we are thousands of miles apart. He is homeless in LA, I send him small amounts of money every week, but it makes it hard to save anything on my end for other things. How can your sons illness NOT be your main focus… Its life changing forever unless he has some spontanious remintion.


#36

I think most of us mothers are just like you and in my opinion, from what I’ve learned through my readings and from my private groups and forums, it doesn’t get much better. It’s a very unique kind of sadness that’s almost impossible to make people who don’t live this experience understand. I believe we learn to live with our sorrow somehow, finding ways to cope. I’m not a very good example, though, of someone who copes. I’ve been crying myself sick for five years! We love our children who have schizophrenia and yes, we obsess and think of them 24/7. Period. Hugs and understanding to you.


#37

Can you please tell me a little more about your grandson’s experience on Clozapine. My son is on Invega Sustenna (234mg monthly injection) and Trileptal (750mg/ 2x a day). It has had periods of being non-compliant so I am afraid to take him off the injections but I don’t believe the Invega is working well for him because he continues to be delusional at times, talks to himself non stop at times, and paces when he is “bored” which is a lot.


#38

Yes, He was on Seroquel, Respiradal, Geoden, Zyprexa and a few others. Nothing helped him, Geodon paralyzed him. I kept begging for Clozapine. It took two years before he got on it. Within 5 days his voices were down 90% so he says. He has continued to get better. He holds a part time job now. They gradually increase the Clozapine. We did it in the hospital so they could bring him up to a therapeutic dose quicker. I believe they did it in 50mg intervals. They have to watch the white blood count closely because of a life threatening condition called agranulcytosis. When he was getting titrated up his blood count was falling, so they gave him lithium to bring the white blood count up, he is on a very low dose. For the first 6 months they draw blood once a week, next 6 months 2 times a month, for the rest of his life once a month. When he first got out of the hospital he was on so many medications Seroquel, Risperdal, Clozapine, Depakote, trichlorahydrate, lithium, gabapentin. We were able to wean him off everything but the Clozapine and Lithium. He takes 450mg of the Clozapine and 100 lithium. He is also driving again. And starting to make new friends. So to me he has his life back. His delusions are still there, they are like set in concrete but he is able to recognize them as part of his disease. He has not been back in the hospital in two years. But he has for the most part been med compliant


#39

Clozapine is bad stuff. I encourage everyone on this med to ask doc about saphris sublingual tablet


#40

I have been going to Lowe’s Clearance and buying sad little plants and nursing them back to health. My flower garden has never looked prettier. It is the one area if my life I can control and gardening is extremely therapeutic. I garden in silence with only the birds and noises of nature. I have come to love this silence.
Yesterday I found deer resistant Gilardia (yellow) and Veronica (pink) for $3 each. My husband built these gardens twenty years ago and is starting to take pride and joy in them again.
Find things in life that bring joy and focus on that. There is always hope.