It can be very challenging living with someone with this illness. I have found my own son likes to have his own space away from us. This arrangement works for all of us. We can handle and care for him better with this living arrangement. He is also a heavy smoker and sleeps at different times to us. I would suggest talking to his case manager and mental health team as far as pension and living alternatives are concerned. Good Luck!
@dibby[quote=“dibby, post:26, topic:2110”]
It is interesting your son does not talk about the illness also. I thought it was just my son
[/quote] Before my son got stabilized it didn’t seem to bother him if I talked to him about his illness, even he would ask questions about it every once in awhile and he seemed like he understood that he had this illness and what that meant. Now I am not so sure he ever did understand back then. He is stabilized now on the clozapine but if I mention anything regarding aspects of his illness it has become a trigger and he will become very upset and in some cases demand that I not speak about it again or go to his room and sulk…I wish he felt that he could talk to me about it but to keep the peace, I just avoid the topic with him. Your definitely not alone though.
When my son was diagnosed and I mentioned the word schizophrenia to him, he abruptly said he did not have schizophrenia. After non compliance of his clozapine at christmas, it has taken a least 5 months to really get him stabilised again I might add. I try to get him to acknowledge he has an illness and talk about it, but unfortunately he will not discuss anything about it with me. So yes it is hard to be around him at times, the subject just creates anger and tension between us. I no longer bring up his illness because I know he will not talk about it. Also I think he cannot understand what is happening to him. Its hard for all of us.
I and some others have made the decision to provide housing for a family member separate from our own homes. My son currently lives in a house that I purchased, and he pays rent to me using his SSI money. My son didn’t have objections to getting onto SSI as a way to pay for living independently.
I’m definitely not MAKING money with this arrangement - I help out with utilities and other expenses - but it provides some needed separation, and has worked better than apartment living, since when he is in crisis, he has always ended up getting evicted.
I continue to consider the possibility of establishing a kind of group setting in the future, where he would have both independence and privacy, as well as the opportunity for socialization and needed support. Its unrealistic to think I can continue to be his sole source of support.
I know it is a challenge for everyone concerned. I think they need a place that is safe, independent fr parents if possible. Somewhere they feel worthy and secure. My son will eventually inherit the apartment in which he is now living. I am just hoping my son will gain insight about his illness and remain living independently as long as possible.
Since I have guardianship, I has set up special needs trusts and have also designated future guardianship.
I have the same problem with my son now. He just likes the street, smoking, and listening to music. He doesn’t want to do anything else. He also is talking to himself which he didn’t used to do. He is also very often in a bad mood. He sometimes says horrible things to me. He will be 30 soon. He was in a transitional house, but did not like it there. Several years ago he was doing well, but not now.
My son sounds like yours. He rarely baths - same for the teeth. He doesn’t want to go to the doctor for lab work or physicals. How did you get yours to go? He has been on Invega Sustenna, Trinza and now Abilify. He talks to himself a lot - this started a couple of months ago. He is on the street during the day just listening to music and going from place to place. He smokes A LOT. He will only get a shot will not take any oral meds.
Thank you SO much for this insight. My fiancé’s daughter has schizophrenia and it’s been difficult to try and understand what she’s going through. I try and put myself in her shoes but really can’t do that since I have no idea how she feels. I understand a lot better now. Thank you again.
I have a 30 year old son who was diagnosed when he was 16. I have done the same , purchased a small home for him where he lives alone and I visit 3-4 times a week then stay with him overnight a few times a month. He gets very lonely and is not motivated to do anything but watch tv. He does clean, laundry and shower now tho which is a wonderful new step. I do feel like he is just in his own world and he gets anxious trying to do anything else. He was on colazaril a couple of times but I think he frightened him to not have his symptoms and his world that he recognized. I would love to find someone who could live with him to get him to engage more with cooking, eating healthy and doing easy activities. I get him to engage but can’t be there all the time and I think he feels odd being 30 and doing things only with his mom! Anyone know of any resources to find a student or nurse or someone who does that sort of live in arrangement? Not too invasive or intense, just someone to make sure he is ok, the house stays safe and possibly engage him in activities. I live in Colorado. Thanks, comforting to know these stories are all so familiar and that my sons life is really the best to expect, although sad…
Smoking … I have seen research where actually the nicotine does help them to relax. And we had a researcher come talk at the mental health clinic that we go to that was doing promising research on treatment with pure nicotine… For both positive and negative symptoms. I will try to see if I can find a link to submit about this study/ research he is doing.
Its good your son can live independently on his own, just like my son is doing. Yours seems to be a little older and able to clean, laundry and shower more normally than my son. Yes my son still only has myself and husband basically as his main source of social contact. What meds is your son taking now?
I truly do believe that smoking does relax him out, but it such a high price to pay in which it will cause all new health problems eventually. The worse part of the illness is getting our love ones to go out and mix with other people. This is where it is so unfair for them. All we can do is tell them how much we love them, and be there for them as needed.
I just joined too. Our son was a freshman in High School when we started noticing behavior/appearance/social/eatting changes; I dismissed it as adolescent struggles then, as that summer went on we thought drugs but he always tested negative. Then it happened, the night that forever changed our family ended with admitted our juvenile son to a Trinty addition center - no junenile centers in our immediate area. The physician told us he was schizophrenic and wanted to start him on Abilify. He was there 3 days when they wanted to transfer him to a adolescent mental facility over an hour away - which would have made our daily visits with him impossible - we have other children, work, etc… PLUS we told the doctor seen improvement!! We’d take him home , call the doctor they recommended ,set him up with a counselor and we’d move on… So, our naive decision was disastrous. So we started to educated ourselves. Oh how I prayed and prayed they were wrong – anyone else PRAY it was drugs? yea I did that… My husband and I fought alot - he didn’t want to accept this; there’s NO immediate family history, his IQ is not low, my pregnancy was uneventful so on and so on. . This is a kid who you never had to tell to do his chores , liked to hang out with his friends, always responsible. . . Our son missed a year of High School. With the suicide attempt, we were too afraid to leave him alone so between my husband and myself; he was able to come to work with me on Wed and Fri and Mon. Tues Thurs he was with my husband. We have come a long way - I think. He took summer school trying to make up some credits and we thought it might help him transition to full school days. That went about as well as could be . . It was tiring for him, he had a hard time motivating to do homework but I think it was a good call. We are back in school for the 2017 school year and he seems to be doing well - we are always watching.
Thank you for you thoughts. My son is on seroqeul and invega.
This group creates therapeutic living environments in Boulder:
I’m wondering whether a person from this program is in your area and looking for work. The whole program is really expensive, but if you could find just one person to live with your son at home… They might know how to find people.
I’ve been trying to find people who can do that - and have found a few willing, wonderful people - but then my son gets his back up about having them come.
I keep returning to the idea that I am going to some day create the place that will be best for my son. A small group setting, maybe 4 adults, all with private rooms, and some supports in place. My son also interacts almost exclusively with only me.
He is currently coming up with every reason in the book for why he should go off of clozaril.
Hi. My son is 30, diagnosed 6 years ago. I applied for his disability about 5 years ago. He didn’t. My son also receives food stamps. He does nothing all day…he does hang out with friends…it’s hard to see him not taking care of himself. He’s gained about 80 lbs since diagnosis. Eats junk, smokes like a fiend and hardly showers or brushes his teeth. He is still very sweet and loving… he will get his second Invega Trinza injection on 9/2…he’s been getting the monthly invega injection for 3 years. I wish there was a motivator to get them out and functioning again.
My son had aggression problems with these meds yours hasn’t? Just wondering. My son also will not shower or brush his teeth or cut his toenails. Now with Abilify he has hallucinations. Trying to get the agency to change it.
@roseo My son was on Abilify for 1 week and began getting very aggressive and I took him right back to the doctor and he changed it right away, apparently Abilify does cause aggression in some people but you have to advocate for your son and speak up to the doctor about what behaviors you see in your son (as soon as you see them) especially when your son is still not stabilized yet. My son went through Geodon, Risperidol, Abilify, Seroquel and Invega before finally landing on clozapine…out of all of those medications only clozapine stopped the voices and hallucinations after about 6 months. …but I noticed a big improvement the first week. Not saying that clozapine is for everyone just trying to say—getting our sons stable is often a long and trying process and it is very hard on them…because you really never know how the medicines will work until they try them.