Bipolar, ADD son, now 29 and back at home... :-(

[theboyzmom]

Life is long, life is not fair. The road sometimes has sunshine and clouds.
Living with a son who has bipolar and multiple mental illness issues is never easy and always a challenge.
We are going on 9 mos. now, with my 29 year old back home with us AGAIN! I have lost count how many times this is.....
He came back from yet another state, another living situation, broke, lost his car and without his medications.
Sigh. I could write a book. It would at times be a comedy if it wasn't so sad.
Living in a winter state, where sun is not out a lot and its cloudy snowy or rainy does not help.
This last job lasted 8 mos. We thought he was doing well Got back on his programs with his psychiatric., his medications, his doctors. was doing seemingly well, and then 2 days ago all fell apart. He got in an argument with a manager and he walked out.
Day 3 holed up in his room in the dark, watching his Netflix. I guess when the money runs out he will have to cancel.
Honestly I have tried everything, tough love, turning him away, putting him in the hospital mental ward, yadda yadda yadda. It goes on.
I understand a lot of things but I don't understand a few.
Spending hundreds of dollars a month on various medications and psychiatric. appts, why is it not helping?
We have been doing this since he was 13. Originally he started with Obsessive Compulsive Disorder (OCD) and depression and was on Prozac. Then it escalated. He was diagnosed with ADD, and also some small psychosis. There is no small psychosis. You either have it or you don't.
Paranoid, the neighbors are weird, the guy on the corner is in the KKK. this house is NSA, turning off cell phones because they are hacked, it goes on and on.
How do I keep my sanity? Most of the time I ignore him and tell him his imagination is running wild and just stop it.
9 mos. ago he was on the phone crying to me, to please let him come home. He had no where else to go and a shelter he went to he got robbed.
So I relented and said ok. We laid the law down and within a month he got a job and we had a productive summer.
Now back at 1.5 yrs ago when he had a breakdown.
Yes this is no life for me and my husband we are now semi retired. We are afraid to leave on vacation when he is like this.
So once again we have to have a pow wow at the table and try to talk it out. I am almost giving up on my son. It sounds sad, but I have come to the realization that he will do what he will do and no one will stop him. I just don't know when that will be. I told him, you know what, if you are planning to leave this planet, don't you dare do it in my house! Don't bite my hand for feeding you all these years one final time because that is like a knife in my heart. I cannot do anything else for him. I have to save myself.

 

[BusynMember]

I am wondering if your son actually is schizoaffective rather thsn just bipolar. That is both bipolar moods with hallucinations. If so, stims for ADD could make him worse...i hope he is not on stimulants. They are not good for any mental illness. He sounds very paranoid, which isn't his fault. Telling him it's his imagination won't make his illness let him believe it.

Is your son also using street drugs, even alcohol or pot? Or is he just I'll mentally ill. Why won't he go to his doctor? I have a soft spot for those who have serious mental illness that includes things like paranoia. Was he in an anti psychotic?

You could make a psychiatrist and taking medication in front of you a condition for him to stay.

 

[JaneBetty]

Boyzmom, we struggle with similar issues with our 27yo daughter. She lived with us until very recently, when things just got too out of hand with the insults, lack of job prospects, etc, etc. She too struggles with occasional auditory hallucinations. It's so hard.
I don't have any advice, but you are not alone. Keep posting here, you'll get lots of sympathy and advice, and for me, it was just a relief to know that I had a place to express my frustration. Most people don't understand what it is like to love a child who continues to struggle with regular life issues.
Hugs to you.

 

[Nomad]

I'm so sorry. We have a child around the same age with those two diagnoses. Is he on medications? If he has repeatedly failed at jobs and is seeing a doctor regularly, you might want to try for social security disability for him. Esp. if he has any other health problem. Our daughtercould not hold down any job regularly and getting a monthly check allows her only the very basics (housing) . Even on disability you are allowed to make a tiny amount of money and work very minimally which might be all he can do. Consider checking the SS rules on-line, see if he will go to the doctor regularly and help him apply because that process can be difficult. As soon as possible, I would try to get him out of your house. For now, set boundaries, do your best to get him to the doctor and maybe only insist on part time work for now esp. But do review the disability rules /literature. if he were on disability, worked a little here and there, took his medication...he likely could get by.
PS yes, save yourself. Read all you can get on detachment and setting boundaries

 

[theboyzmom]

Hello and thank you all for so many good responses and info. Yes he is on a myriad of medications and had a breakdown in 2015 after returning from a FL trip where he lived with friends. We had him hospitalized after he went crazy one evening cutting wires from our smoke alarms, lights, and taking our vehicle in the middle of the night to try and cross the border. It was a miracle nothing happened to him. We had to make a police report because we didn't know where he was. He left in pajama pants without a wallet. Later afterwards we discovered he was off his prozac and lamictal for almost a month trying to save money for food. When he came home from hospital they had him taking an anti psychotic but he could not wake up on this stuff, it put him in a stupor. So his Psychiatrist took him off of it (he was on resperdal for a month) He was put back on prozac and lamictal and then adderall because he couldn't wake up in the morning, and was extremely disorganized, not showering, shaving just living like a caveman....(it was awful) The adderall for him was good, because he eventually went back to college and could graduate with his BS after 6 yrs. trying. But now he has other issues. The adderall has begun to give him side effects like twitches, eyelid winking, and most recently he started showing signs of PBA. (You must have seen the commercials on TV for this) (First we thought it might be tourettes or something else but ugh....who knows?) He is on a trial medication for HIV (another thing we found out recently) trial because its free. He cannot afford the retroviral medication, its almost $2,000/mo. I accepted the fact a couple of years ago he told me he "thought" he was gay. I cried for days, but then I let it go. As a mom (and a single mom for 9 yrs. after their dad left) I gave them my heart and soul and everything I could. One son is married and a lawyer now and this one is struggling. I cannot look back anymore it is heartwrenching. So we live day by day and try to turn the lights on in winter, and keep things positive. I love to cook and try to cook healthy meals and go over and beyond what a lot of parents I know would do. I have had some people say "kick his ass out, he's a man now." But, I am compassionate and know what this disorder is. It runs in the family, his dad had it. His grandma had it. I am not there yet to let go. He is considered highly functioning and most days now he is ok and actually spends time with us after dinner talking and laughing. But on a gray rainy day, its not so pleasant, but we are learning (my husband and I) how to read the moods and counteract his dark tendency to be down. I believe he can also be manic at times, but not yet diagnosed, because we are not allowed to talk to his doctors. That's the law. We tell him things but we don't really know if he is telling his dr. these things or not. He's sneaky at times. Right now he is on a high. He's busy cleaning, and organizing his room. Why? Because we told him we were going on a trip to Florida in March. He was ecstatic and wanted to go (like a kid). So he already quit his job (not happy about this, but no energy to argue) he's paying his bills for the next few months in advance, and he's going with us. I don't know how long his life will be, but for now, we just try to laugh a little everyday and be kind. I push my worries back in my mind, because it does me no good. While we are in FL I will take some photos of him in the sun, happy as I want to remember him that way. (Photography is one of my hobbies) We just don't really know how long he has. I am preparing myself for what may come down the road....
and I didn't even mention I also am a caregiver now to my 89 yr. old mother. In the last 5 yrs., 10 family members have passed away, include my father and my sons' father (he drank himself to death) so that is why I cannot just kick him out. Sigh.

 

[BusynMember]

I a! Really sorry.

I thought there was good, life sustaining medications for HIV. Many poor people take them. There must be a way to get the medications as most people don't have a lot of money like that. Few die of HIV anymore...

 

[Cheerwyn]

My perspective is a bit different because it's my mother (who has dementia) with the hallucinations and delusions, not my child.

But one thing that I think is pretty universal is that telling them that it's not true or their imaginations are running wild does not help. In their mind, the delusions are real and they're already struggling to deal with the confusion that it brings. It just causes more angst to tell them they're imagining things.

It can't be done with every situation, but with my Mom we just go along with it in some way rather than contradict.

"Have you talked with Joe recently?" Joe's someone from her high school who she hasn't seen in years. "Oh yeah, he's doing fine. Talked to him last week."

It's not always possible to do, but for things that they are worried or stressed about, it can be useful to ask what you can do to help or redirect their thoughts.

My Mom is convinced that my 12 year-old son was accidently shot by someone and is being treated by her family doctor (Dr. Miles) who retired years ago. So when she calls to ask "How is Ian doing? Has he been to see Dr. Miles recently? I can't believe Mr. Allen shot him." I say "Oh mom, I talked to Dr. Miles he's doing great, completely back to normal. Hey, did I tell you Ian made the A and B Honor roll?" I only mildly acknowledge the delusion and just move on.

You have so much on your plate, caring for your son and your elderly Mom. Clearly the "sandwich" years.

 

[susiestar]

Please know that who can and cannot talk to the doctor is totally up to your son. Your son is living with you. It is NOT too much to ask that you be allowed to speak with all of his doctors as a condition of being allowed to live in your home. My children ALL know that a condition of living in my home is that I am on their HIPAA forms and am allowed to speak with all of their doctors. There is absolutely no discussion of this and no debate, and there never will be. Also, even if there is no way for the doctor to speak with you, you CAN speak to and write to the doctor, and the doctor CAN listen to you. You can write a letter and mail or fax it to the doctor even if you are not on the HIPAA forms.

If I were you, I would tell your son that you and he were going to his doctor's office and he was going to sign a form so that you could speak to his doctor or he was going to find a new home. That you are doing this to protect him, because you love him and want the best care for him, and because you are allowing him to live in your home under your support. If he wants that to continue, he is going to go with you to his doctor's office. Otherwise he is going to go and pack. Then you will go and speak to his doctor. If you are not up to this, then write a letter and fax it to his doctor. You can get his doctor's info from google - every doctor is on there. Put whatever info you think the doctor needs to know, like the medications being so expensive, your son's current manic state, and all the other stuff your son isn't telling them. without the full info, the doctor won't be able to treat him and that is hard for doctors.

 

[susiestar]

Did you know that antidepressants and stimulants are NOT recommended for people with bipolar? Until moods are stabilized, these medications are exactly what someone with bipolar should NOT be taking. They are highly likely to create mood swings and to specifically push the moods into mania. Many doctors don't know this or for some reason won't follow the protocol recommended by the board that certifies psychiatrists. The protocol for bipolar starts with mood stabilizers and then includes antipsychotics. Often it takes 4-6 weeks to get to the therapeutic level and longer to see if it will work. After that, IF moods are still depressed, a very very low dose of stimulant or antidepressant may be used to deal with side effects. This isn't easy to manage, and from experience MANY psychiatrists want to skip this and use antidepressants to manage bipolar even though it is scientifically PROVEN to not work and to cause more problems. I am sorry if no one has ever let you know that this is the cases for bipolar. MANY medications, both prescription and over the counter, cause problems if you are bipolar. Even decongestants can cause mania if you are bipolar. It is not an easy disease to live with or manage and it sounds like your son's doctor is not giving him the most effective treatment or your son isn't willing to comply.

What many people don't know is that the manic state can be addictive. People get a sort of high from it and want it more and more. THey are willing to put up with the lows of the depressed state to get that high, and they often will not take the medications they need because they don't want to give up the manic state or to stop accomplishing 'all' that they think they get done in that manic state. They don't see how hard they are on their loved ones or on themselves and some never see it. They also never see the increased mortality rate that untreated bipolar has. Just because one antipsychotic didn't work well in one combination of medications doesn't mean that another medication combo won't work well to manage the disease.

This is why I think you need to be able to speak to his doctor on his behalf, even if you need to push him into it. I am sorry if I am not explaining this very well, but I really think that you need to speak to his doctor to see what the doctor really thinks is best and what your son is telling him as far as symptoms. If nothing else, type out a list and have your son take it to the doctor, ask for your son to bring it back with the doctor's notes on it so that you know what the doctor thinks if he won't let you go to the doctor with him.

 

[Nomad]

Fairly sure he would qualify for disability....please take a good look at the requirements. Maybe if he knew he would likely qualify you could get some cooperation from him. It would go a long way if he went to the docs regularly and took his medication regularly. Having a chronic health issue, plus one or two mental health diagnosis's....very likely would qualify him and perhaps give him the ability to pay for medications he needs. Again, don't forget, even on disability, one can make a small amount of money per month. Think about it carefully, maybe part time work is all that he can handle regularly.

 

[tishthedish]

I have been through not being able to speak to my adult son's doctors. It would have been great to have something signed, but at 18 he was fine. Manifestation of his illness in full didn't happen until he was 25. I have written/faxed his doctors (without his knowing, he would have flipped). They are under no obligation to share his information with you, but you may tell them anything you like. That's what I learned in my NAMI Family to Family class.

Think about it carefully, maybe part time work is all that he can handle regularly.

This is such good advice. My husband and I didn't realize that he was getting sick. He was at college and then at grad school and didn't live at home for 6 years. It was in grad school he buckled. He put such expectations on himself and we thought him capable of anything. After a long while he took medication, moved home and got a full-time job. We didn't realize it was too much pressure on him until it was too late. He was insisting he was fine and we wanted to believe it so badly we stood down.
We live in a major metropolitan area and he had the best medical care. He just wouldn't/couldn't maintain.

If my son would have been amenable I would have beaten the bushes for recommendations, reviews, studies, anything to give me insight or an idea of where he could get help. Sometimes just getting the right person on the phone, the one who will talk to you or tell you who is the better doctor in the practice might make a difference. If you haven't contacted your local NAMI chapter, I'd start there. There are parents on the same frequency as us and I found the most support and the best advice there. It hasn't worked out for us unfortunately, but it sounds like you have more of a foothold in his life. Good luck. Sending hugs and blessings.

 

[Copabanana]

Welcome theboyzmom. I am glad you are here.

Honestly I have tried everything, tough love, turning him away, putting him in the hospital mental ward, yadda yadda yadda. It goes on.

Me too.

9 mos. ago he was on the phone crying to me, to please let him come home. He had no where else to go and a shelter he went to he got robbed.

Us too. Us too, for most of your post. Unfortunately.

allowed to speak with all of his doctors as a condition of being allowed to live in your home. My children ALL know that a condition of living in my home is that I am on their HIPAA forms and am allowed to speak with all of their doctors.

I had not thought of this. This makes so much sense. Thank you susiestar.

It is hard to find a balance between wanting them to reach their potential and realizing they have. I struggle here, too. Especially because I am retirement age with no other family than my son. I worry about him alone when I am gone.

I would have beaten the bushes for recommendations, reviews, studies

Tish! You are back! And I read your signature that your son regained full custody of his son. I am so happy for you. And for him. And for grandson! Welcome back. For months I watched for you, hoping for the best. How are YOU?

 

[theboyzmom]

Again thank you all for the encouraging comments. I have given much thought to all of this.
Actually last year he was on disability and getting free medications but he wanted to work so he could save for a car. Because he worked in fast food service (the only place he could get hired) he made more than $16K and they kicked him off assistance. But when he tried to buy his own insurance we realized the cost of his prescriptions was almost more than he took home each month ( net) So its almost as if they force people to go on disability because they can't afford to survive on their own. As mentioned he is highly functional and wants to work (sometimes he dreams too much about being a CEO) but if he is to get help for medications, he has to scale back to qualify for assistance. Its a very frustrating thing. He wants to be productive and have a job, yet now with the prescription costs his choice is limited. Either go back on Medicaid (and be sane) or work 60 hours a week and struggle, live at home and skip some medications. Terrible conundrum and it makes him talk again about giving up on his life.
I am making an appointment with his doctor, this is a rural county center so they try to do as much as they are able. We (my husband and I) realize his limitations and accept the fact that he may never realize his dreams or maybe move out, but he doesn't see it yet. I am not one to burst his bubble and destroy the little confidence he has left. He may go back on Medicaid and try to do something like cut lawns or computer work. Believe it or not he graduated with a BS in Computer science and when he is immersed in the hard drive and circuit boards and formatting software he is in his glory, even though he may forget to shower, shave and eat We joke and call him the family nerd. So far we are 9 mos. on Prozac and Lamictal only, and life with him is manageable. He just needs to find a job where he doesn't make too much money legally ( joke right?) No one can live on $16K. Its almost a comedy....

 

[Copabanana]

Actually, your son sounds quite remarkable! I admire his desire to work, and wanting more for himself.

he has to scale back to qualify for assistance.

Is he open to going to college? As I understand the rules for SSI, at least, there is no restriction about getting educated including graduate degrees. I think he would be eligible to get a work study job 15 hours a week, I think it is, the income from which would fall under the cut off for benefits, as far as I know.

There is a famous psychologist who is bipolar and written books about her experience.

 

[susiestar]

If he goes back, do NOT NOT NOT let him fall victim to a for profit college. They end up being MUCH more expensive than a state university and most of the degrees are NOT worth the paper they are printed on. They are a true racket. Let him go through a state university and get a real degree from real instructors. My hubby taught at one of those for profit colleges for a short time when he was desperate for a job. Half of the other 'instructors' were barely qualified to work a fast food job. My husband was offered jobs teaching in any department he wanted because he had a graduate degree. His degree was in computers but he could have taught English if he wanted according to these people, or Nursing even. He was appalled and even more appalled as the term went on. You are not really given an education at these schools for the most part and you are charged WAY more than you should be.

I am sorry that it is so hard to balance finding good medical care and being able to work. I hate that about our society. I really think other countries handle this much better.

 

[theboyzmom]

Thank you for all your good comments. He did graduate from college as previously mentioned with a Bachelors degree in Computer Science. It was in his mid 20's that most of his problems manifested except for depression and Obsessive Compulsive Disorder (OCD) at around age 14. He has since met with his case worker and will now go on a different medical ins. plan, but not Medicaid and he will get some medications for free. The HIV pill now that he is getting (the last week) is now free thru a clinical trial at the local university. He has a good heart and has empathy, but he wasn't always this way. In his late teens and early 20's he was very reckless and led a very destructive type of lifestyle. I really thought he wouldn't live this long, but like his dr. said, he wants to live. SO we continue our plan putting lots of lights on in the house on dark days, winter is so gloomy up north, and we try to laugh and watch comedy shows when he is present. We took out the other cable box, so he is forced to watch tv upstairs in the family room with us. I do think the news shows and breaking news stuff is not good and it can cause people with mental illness to get overly worried and depressed more than normal.
He does tell us he misses school, and wants to get a masters degree, but we are really encouraging him to first pay off the current student loans before going into that huge debt. I think he misses the structure of school and other people his own age. He doesn't keep friends long and they all are out doing things that people in their 20's do He stopped smoking and rarely drinks because he can't. When he does go out he's usually the designated driver, but he almost gave up on that too. He gets disgusted babysitting others.... but life is moving forward and there are more good days than bad...so far...

 

[BusynMember]

He is doing an amazing job considering all his challenges. I commend him. In his case i think being with you is good. He is trying but needs support while he slowly gets better. He sounds like a nice young man. He seems like one who will do better and better as he tackles each challenge. He is a smart young man with a degree...I feel sure he will get a good job one day. If he has a case manager, that can help him find employment. They even talk to potential employers and he had such useful skills.. Maybe he needs to start part time. Somebody out there will go gentle with him and give him a chance.

Has anyone suggested he could have aspergers, smart with anxiety and struggling social skills.

You are doing great. Kudos to all. You sound so loving. Extra kudos.

 

[theboyzmom]

He does not have aspergers, he has been under care since age 13 when it started with Obsessive Compulsive Disorder (OCD)~ hair pulling, eyelash pulling and depression. When I look back at his school photos, the big change in his eyes and face was between 7th and 8th grade. Adolescence was hard for him. He had an abusive alcoholic father which I divorced when he was 12, but I may have waited too long. For some time I blamed myself for not doing it sooner, but I did not know what was going on since I had to work to keep the food on the table, roof and car. But I did it, much to the family's dismay and got us out of that house which was loaded with bad memories.
He is a good guy, he has a big heart. He is thoughtful, and recently with sunny days he is getting back to normal. He desperately wants to meet people and make friends but I just don't know where to direct him. In the past his "friends" were all users and took advantage of him.
He posed a new question to me the other day, and I didn't know how to answer. I only give my opinion and tell him my thoughts because he does what he wants. So the question was: Has anyone out there used or know anyone who has had good luck with a website called POZ? It appears to be a site that people try and meet others who also are HIV positive for whatever reason. Not necessarily LGBT but also people who look for companionship and friendship. My son is thinking to try something like this. I don't know enough about it except what I have read and it seems ok, BUT always I am skeptical for things on line. So if any of you know about this site please share any info you can.
Obviously, my son is not religious and has trouble going to a church. He feels he doesn't fit in. In the past when people found out about him they were not very accepting. The community and neighborhood we live in knows that he has problems and so ignorant as some people are they are not friendly at all. But better days are coming with spring and our vacation, we are hoping for the best and want him to get out and socialize.