My 25 year old son has schizoaffective disorder. So far the meds are still not working! There is no down time for him or me and my husband. There is no talking him down. I can’t ask him a simple question. The delusions and paranoia are never ending. I keep telling the psychiatrist the meds aren’t working and she keeps telling me I have to wait and see if the new meds will help. She just upped the dosage or changed the dosage. I am so tired of living in fear of my son. Then my husband gets mad cuz’ we can’t fix him and then he starts yelling at me. I can’t walk away, but I often think about it. This disease is worse than anything else. He is still young and can have 60 years or more like this! We also have to find him some insurance as he will be 26 next month. I am overwhelmed.
I think your subject title says it all. You need a break. My son who is 26 and suffering from psychosis recently took a part time job. I am highly doubtful it will last, but just having some “down time” has considerably helped me to deal more effectively with our tricky situation. So sorry to hear that your husband is venting on you. My husband has been away for the past month on business and in some ways it is easier to just deal with my son on my own. Can you and your husband work out a deal where you give each other substantial (even several days) breaks?
That is good that he is taking medication and seeing a psychiatrist. Those are major accomplishments in this battle. Even if the medication is not working for the moment, I would keep your son used to the idea of seeing a psychiatrist and taking medication. Hopefully either you will begin to see positive effects soon or the meds will get changed.
I got my son on Medicaid during a recent hospitalization. It was fairly easy to apply and because at the time he had no income, we had no problem getting it. Have you contacted your local NAMI? I just started a support group through them and I am finding it helpful. You should be able to hook up with people that have experience with the insurance issue and other things.
Sorry to not have more wisdom to offer. This thing is so god-awful and it is so normal to be overwhelmed.
Thank you for your reply. Things went from bad to worse last night. My son was Baker Acted. He actually phoned the police to have his father arrested. He wasn’t too happy to find out that he was the one getting taken away. In addition to his meds from his psychiatrist, we found out that he had been drinking. That is a toxic mix which caused such extreme anger. His dad wouldn’t let him take the car for fear that he was unable to operate the vehicle in his condition, which turned into my son attacking him. He tried to gouge his eyes out and bit him. My husband was trying to defend himself and also get his keys away. It was a mess! I don’t want him in my house anymore! If anyone has any suggestions while he is hospitalized as to what I should be doing at this point, I would be grateful.
@Tippy I am so sorry to read of your latest crisis! You definitely need a break. Take the time to care for yourself bc when the psychosis is bad it is overwhelming. At that point, with no respite care, I don’t handle the bad days as well. The latest thing I’m learning about is CBT—it helps me to ask questions to detour his current delusion that’s coming my way. Hang in there.
What a nightmare @Tippy . I hope that your husband is all right. How absolutely sad for all of you. I hope someone here can give you some direction on getting your son transitioned from hospitalization to some sort of supported living situation. My only experience has been that the hospital verifies that my son will be living with me and then releases him with medication which he does not take. Not a winning scenario and yet one we have been through three times. I imagine you will need to make to perfectly clear to all parties that your son can no longer live with you and that something else needs to be done.
Tippy it’s hard to think clearly when you are in the middle of a crisis. I hope you get a few good nights sleep knowing your son is safe and cared for. It will help you think clearly and plan for the day your son is released.
The very first thing I would do is get rid of all alcohol in your house, or at least lock it up. Figure out how your son is getting alcohol, is he purchasing it? Consider taking his ID/drivers license until he is better. Get the therapist’s agreement on this (if you are able to talk to the hospital therapist assuming he signed the HIPPA form) and have THEM tell him this. It sounds as though he might be self medicating with alcohol, but you are right about the meds not being given a chance to work if he is drinking.
I have learned not to expect miracles from a hospital stay but they also tend to be markers, low points, and each one in our case moved our son closer to accepting help.
I’ve also learned on this board from that the quiet and safe atmosphere of the hospital helps a great deal.
So, if he does come home, keeping a quiet home with no loud noises or stressors might help continue what the hospital started.
I don’t feel qualified to touch on this point, but you deserve to feel safe in your own home. Just my opinion, but the hospital therapist should know (even if he didn’t sign the HIPPA form, they can listen to you) that you and your husband do not feel safe. Your son is suffering and he deserves some peace of mind also.
Good luck and know that you are not alone.
I hope the next med they try is the one that works, it stinks that it is all trial and error.
Others on here know a lot about group homes if you decide he cannot come home.
Any way you can afford a place for him? It is very hard to have him with your husband in the same roof. Things can explote anytime.
Arranging for a longer stay in the hospital will help. But he being 25, there is no much you can do in terms of talking to the docs about his treatment. It is hard. I have being there.
Try to see what help is provided by your county. Some offer mental health coaches that can help him managing meds, etc.
I can’t find out anything! I will try to find out if there are mental health coaches, thank you.
I will try to take his license, but I don’t know how that will work out! Right now I am trying to find out SOMETHING about what is going on at the hospital, but due to his age, I am left in the dark. The alcohol was purchased with his money. I have to be honest, it sure was nice going home last night and knowing that I wasn’t going to have to deal with any of his issues. I can’t even mop the floors when he is home. I have never been so excited to clean my house! I sure hope that something positive comes out of this. Thank you for advise.
Hi Tippy, so glad to hear you got some alone time, even if it was only to clean your house!
I am certainly not a professional so can’t advise on taking his license if his behavior is volatile BUT…one thing I have learned on this forum from @Maggotbrane is that we have to grab leverage from wherever we can find it.
We found we had more than we thought when our son was hospitalized and he was desperate to come home. With the hospital therapist, we were able to make a condition of his coming home either giving up his license (doctor was also in full agreement due to the risk of drinking and driving) or getting the Vivitrol shot. He agreed to the former.
The doctor is the one who told him this and I believe he used very strong words. It was very difficult to hold our line on this but we did.
It wasn’t the total answer, but it was a step towards recovery that he bought into.
Also, we were sure never offered assisted living as an option, only home or homeless, so maybe someone else had an idea on how to get that as an option.
Hang in there!
This is really hard to discuss in a written format. This is where a support group could give you some guidance, I would think. But here goes:
You don’t have to let your son come home, but since he IS taking medication (from what you say it is just that the meds are not yet working), you might want to give the meds a chance. It is also possible that with this most recent hospitalization, a psychiatrist will put him on something entirely different, like Clozapine (which has the potential to be a a really good thing). You can put conditions on his return to come home, such as (1) must take medication as prescribed, (2) no violent acts, etc. You may need to identify the benefits of that for him that will seem more like a win-win from his viewpoint. What will you be offering that is really important to him? (food and lodging, obviously, but other things like cigarettes, or occasional rides to places he wants to go, could be especially meaningful to him…whatever it takes to make him feel like he has some control but not beyond what you are willing to do to ensure he is med-compliant and that everyone is safe). If he comes home and doesn’t follow the agreed-upon plan, what will the consequences be, and how would you enforce them?
If you were to tell the hospital your son cannot come home (because you are fearful for your family’s safety), it would be up to the hospital to find a place for him to go. Some hospitals do that better than others. It is usually helpful at that point if the person is already on Medicaid and qualifies for government benefits. The process for doing that varies by state (so a local support group could offer guidance), or I suggest to contact the hospital’s financial assistance office NOW (regardless of whether he comes home or not) to enlist THEIR help in getting him on Medicaid.
You had mentioned obtaining other healthcare insurance for him because he is turning age 26. If you would like to keep him on your current insurance through a parent’s employer (which could give him more medical provider options), you or your husband can contact your employer’s HR/Benefits department and ask how to petition the employer to keep your son on that policy because he has a disability. Apply for this quickly before he turns age 26 or it will probably be too late. If approved, your son could retain his current private insurance and still be eligible (if meeting other criteria) to have Medicaid as secondary. On the other hand, if Medicaid is primary (no private insurance), this typically opens the door to other government help. Each state is different, so it would be helpful if you can find someone locally to give you some thoughts on this, or maybe others will comment here.
I have made several attempts to contact his “team” at the hospital. I can not find out anything! They can’t even tell me he is there! Stupid HIPPA! One would think that if a person is unable to act rationally, a family member should be brought into the picture. His 72 hours will be up today and my stomach is in knots! I couldn’t even find out if I could bring him his glasses or some clothes. I tried every tactic I could think of. I wanted the Dr to know what meds he is on and what he has tried, couldn’t even do that. Very frustrated!
Is your son able to work? If not SSI might be an option. Once on SSI he will have Medicaid health insurance. Are there any community services n your area? Local mental health authorities?
I’m so sorry you are going through this. I can’t emphasize enough how important it is to take care of yourself first when you are in this situation. Don’t worry about his glasses, when he is getting out or anything else for now. Draw yourself a hot bath, take a long walk, or do whatever brought you joy before all this happened. This is your break. Trust me, you will hear from the hospital or from him soon enough—when he wants to come home. That is when you will need to use all the strength you gained during this time and just say NO.
He is a grown man and he can make his own choices, unfortunately, even though he is incapable of making good choices for himself—there is nothing you can do about that except not enable him. Chances are if he’s drinking he is also taking drugs and that’s why his meds weren’t working. In any case, he can go to a drug and alcohol rehab program from the hospital and then to a halfway house where he can get a job and learn to take care of himself. Or he can choose to live on the street. You can encourage him to do the former, perhaps by offering to pay for the out of pocket on the rehab and first month in the halfway house, but ultimately he is responsible for his life and you are responsible for yours.
He might have 60 more years like this. How many more years might you have? You can’t take care of him forever. Isn’t your life is just as valuable, precious and brief as his? You are responsible for your own happiness, not his. I know this sounds like heresy because mothers are so inclined to sacrifice everything for their children. We often become co-dependent. I am speaking from vast personal experience here. I would suggest a book called Co-dependent No More by Melody Beatty.
I agree with everything others have said about not letting him come back home. I would add that you should consider getting a protective order to prevent him from coming anywhere near the house. Because he assaulted your husband, that shouldn’t be hard to do. You and your husband may even want to consider pressing charges. Sometimes the criminal justice system is the only resort. You can’t keep his DL because he will need that to get into rehab, get a job etc. I would suggest you pack his clothes in a suitcase to give him when he gets out of the hospital and box his other belongings to give him when he is settled. You might even consider putting them in a storage unit somewhere so he has no reason to try to enter your house.
Please, PLEASE, do not be tempted to ever let him live with you again. There will be relapses even if he seems perfectly fine and even remorseful when he gets out of the hospital. You or your husband may not survive the next attack.
I hope you and your husband can get on the same page about this. Otherwise, you may need to leave. You don’t have to live like this. You didn’t cause it and you can’t fix it. You can either continue to put yourself in danger and make yourself miserable trying to do the impossible, or you can take back control of your life.
My son became psychotic for the first time at about the same age. I spent the next 10 years trying to fix him. He would verbally abuse and threaten me and destroy my property, although he never was physically violent with me. Nothing I did made any difference. I became so depressed I considered taking my own life. I wish someone had told me this 10 years ago, but I probably wouldn’t have listened. I struggle every day to follow the advice I’m giving you now. It is not easy, but it is truly a matter of life or death. I decided to choose life. I hope you will too.
I hear what you are saying and thank you for saying it. My son’s psychiatrist is not on the same page. She has said to us that it would be like leaving a 6 year old to live on there own. Because she has said this, my husband will not agree. My son just got released from his Baker Act last night. Due to COVID the hospital he was supposed to go to, turned into a place to put COVID patients. He was shipped over an hour away and basically stayed in a run down building with a TV. He met with a Dr when he arrived and then was pretty much left alone for 6 days. This is such a mess!
I applied for my son to stay on my medical insurance when he was 25 and he was accepted. So now he has Medicare, medicaid and is on my personal insurance. I haven’t posted on here for a long time because our lives have been so sad. Our son was hospitalized in 2018, MHA 12 times and over a 100 days in the pysch ward. The last time he got out in early 2019 we told the hospital he couldn’t come home because we were afraid of him when his psychosis got bad. They sent him to an assisted living house and while there one of the other clients who lived there introduced him to crack cocaine. You want to laugh, since he started doing crack, his psychosis is gone, poof, just like that. Well, one can not live on crack cocaine unless you have money, lots of money. So he stole and got caught. We sent him to a prestigious drug rehab in Massachusetts and 5 days in of detoxing him off the crack, he became psychotic and they had him MHA. My husband drove to Massachusetts and got him out of the psych ward and drove him down the coast for 4 weeks. It was so hard on my husband because most of the time our son was delusional. But he was trying to keep him away from the crack. When they got home it only took 2 days and our son was gone for 4. (in some crack house), Since then he’s had 2 apartments which evicted him, he got caught stealing again, judge ordered him to rehab, so we sent him away again, to CARS, he was there for over 3 months and we would visit him monthly. When I visited him I could see the struggle in his eyes, i told the therapist he needed to see a pysch Doc and he did, they changed his injectable from every 4 weeks to 3. He graduated from the rehab and we picked him up 10 days ago. The first night home his brother/family and sister came over for dinner to welcome him home. He never slept that night, the mania came so fast it was unbelievable, walking around talking to himself, he was out all night walking. probably walked over 30 miles. The next day he couldn’t sleep, he walked to the city 15 miles, hocked his watch, gold chain, an lived in a crack house for 3 straight days until they through him out because he had no more money. He called us at 4 in the morning and we went and got him. He crashed and slept for 16 hours. So many blister on his feet. I called the courts, his MD and told them. Oh they were sorry. He’s been home five days now. When he sleeps and wakes he is pretty clear headed, but as the day progresses so does the disorganized thinking, then the urge for the cocaine to clear his head, then the meanness in his voice because we wont give him money and drive him to the city. Or we won’t drive him to the pawn shop so he can pawn what few worldly possessions he has left. We simply say no, and lock ourselves in our bedroom and listen to him bang doors as he goes in and out to smoke. We listen to him call us horrible names and we worry he will break the door down and hurt us. We have our cell phones right by us and the police in our small town know him well. So finally he is starting back in group meetings and meeting a new psych Doc on the 25, So much more to this story, but the moral is be careful where the hospital sends your son to live, you don’t want to open a new Pandora’s box. I’m sorry I went on this tandem and made your steam about me, I guess I needed it. It gives me comfort to know that others know what I’m going through and I know what their going through too.
My god Robin. I am so, so, sorry. What an absolute nightmare. How much can one family take? How appalling and scary that they system that is supposed to be helping him only made the situation far worse. Perhaps your post will save others from going through what you and your family are. Truly sorry.
Thank you. This world of mental illness is very familiar to me. My mom, dad and brother were bipolar. All are in heaven. My brother was so paranoid that when he got sick he refused to go to the doc. By the time he did it was to late. The infection was raging in his body. My mom a heroin addict. My oldest boy has schizophrenia. Some hope for all, my oldest boy, takes a handful of pills daily to stay sane. He has an amazing job, that pays well, a beautiful wife, house, two beautiful daughters and a dog. He is 17 years older than his younger brother and is very supportive of him and his parents. I also have a daughter who is there for all of us too. I am blessed, just wish the younger didn’t ever try this drug.
Robin, thank you for sharing. Each of our stories is different, but typically such a difficult road. Schizophrenia is bad enough but pared with illicit drugs…what a nightmare! It is hard to focus on the positive when you are in the middle of the active nightmare, but as much as we can, I believe that will help pull us through. I found that faith was a big help to me, also, at a time when our son was missing and homeless and we didn’t know if he was alive or if we’d ever see him again. There are times we need to let go, but on the other hand, there are times it seems worth the fight. I believe there is hope for a better future in a realistic way (that’s a NAMI principle of support). It might be hope for our loved one or maybe even just hope for ourselves. In your situation, breaking the addiction cycle is paramount, but treating the addiction at the same time as treating the SZ illness is especially challenging. I am hopeful for the “group meetings” you mentioned and the new pysch doc. And I always advocate for using communication tools with our loved one like LEAP and other strategies I learned in a NAMI Family to Family Class. Take care of yourself. You are cared about.
Thank you for your sweet words