My son’s symptoms are so numerous and difficult to understand. He always thinks that everyone is persecutory towards him no matter what they do or say. He adamantly denies hearing any voices but I find him talking to himself and laughing hysterically out of the blue. He has admitted to me that he has intrusive thoughts that are very distressful to him. He never seems to hear us when we are speaking to him and we have to repeat ourselves several times before he understands. He can’t remember what we are doing if we get ready to go somewhere, five minutes later he has no clue what we are doing. He freaks out over the littlest things like me removing my socks, he said is disgusting and starts yelling. He starts ranting all the sudden about seeing nasty porn everywhere when there is absolutely nothing like that in this house. It is so bizarre to me and i’m so sad that i can’t comfort him when he seems so alone and afraid. He thinks that we are putting vitamins or medicine in everything so he refuses to eat or drink what we make. In the earlier days of the illness, he only believed in all natural remedies and hates to take meds so he refuses them. Now that we have researched and found a link to vitamin deficiencies and his DNA that can be attributed to his symptoms and offered to get him an appointment with a naturopath to prescribe specific vitamins and minerals instead of his psych doc, he refuses that. I want nothing more than to help him but even his case manager said that she has never had such a difficult client. I feel like we will never get better.
I am so sorry this is happening with your son, the symptoms sound similar to my daughter. She too was only using natural remedies for her life before illness, and she will not see a p-doc or take meds willingly.
Have you contacted NAMI and read, “I’m not sick, I don’t need help”? Those two things, plus reading on this site, helped me most to make changes to better life for us.
I have contacted NAMI and they want me to go to the support group meetings. I would love to but cannot leave my son alone to go. I have read the book but need to read it again. Being in a state of constant distress makes everything so hard.
I am so sorry you are going through this.
I was in a state of distress for three years, sometimes greater, sometimes lesser, sometimes unable to leave my adult child alone, sometimes able to. I could not attend support group meetings at those times. There are people at those meetings who completely understand this.
What I did was ignore all non-aggressive and not-breaking-things behavior and speech, not for my child’s sake because it got to the point where I had desperately tried to access treatment over and over again and the system is broken in so many ways that just, I finally came to understand that my family and my beloved adult child would not be helped unless something very bad happened, which, tragically it did.
What you are going through is so far beyond what any human can bear, at least in my experience. It took me back to the most tenuous sense of hour to hour survival at times. I could not plan one minute into the future. I could not imagine anything except trying to get the slightest amount of safety and nourishment for my family member; sometimes it took every ounce of my energy to do so. Many, many times I failed. All I can tell you or anyone else is that my love for my child became a kind of through line, like a thread leading me through a dark forest or a line to an unseen liferaft in the middle of a choppy ocean. I knew, I knew that if I gave up I would also be lost. And I did lose so much through this time, these years, friends, family, work, etc.
More than one “professional” told me to drop him off at a homeless shelter. That is NOT a response to a medical illness and no one on earth would suggest that to any parent going through the serious illness of an adult child if that illness were cancer or otherwise one that does not bring discrimination against the patient. When our children are this ill, what else can we do? What most parents would do. And we can also stop. We have our limits, of course, our physical limits of endurance, financial limits, etc. We can make choices. But if our kids had cancer with a 10 - 15% mortality rate, every single person we know would understand exactly what we were doing and why.
I am also sorry his case manager said that to you. What I wish they would have said is, I do not have the skills and training to work with your son in the way he needs. I would like to keep working with him even though I am not sure how to help him. I plan to consult with [the team, doctors, colleagues, etc] to try and find a way to support him and meet his treatment needs. Does that sound alright? Or do you want me to help you look for a different case manager who might be a better fit? I will work with your son until we find someone and I will be there for the transition.
My family member was dismissed and written off by many providers. Today, with court ordered treatment and a large and supportive team, he is doing fantastically well. It is not our family members’ fault if systems can’t come up with the needed resources and administer them. Providers need to admit what is happening when they can’t help. The difficulty is with extreme lack of resources for people with severe mental illness and the system being broken beyond repair, not our children, who are extremely ill and in need of medical treatment that is almost impossible to get. The court ordered treatment and team support my child has now ends in less than a year and I have no idea what will happen then.
I do know 100% for certain that with the evidence based medical treatments and wraparound psychosocial supports my family member is currently receiving, the illness is no longer in charge of his life or mine. He is great to be around and, yes, he still has symptoms of the illness, but he has a life that he is determining for himself. Real treatment works, but the chances of getting it are slim. The chances of it lasting as long as needed (lifetime) are even lower. But treatment works for most people who have these illnesses. I pray that someday, somehow your son receives the needed medical and psychosocial treatments and supports that allow people who suffer so much from these severe illnesses to manage and get by and live good lives.
your reply and statement is well written and you are very right about this statement:
The difficulty is with extreme lack of resources for people with severe mental illness and the system being broken beyond repair, not our children, who are extremely ill and in need of medical treatment that is almost impossible to get.
I would ask for another case worker to help your son. he must be forced into treatment . you need to be strong for him and take charge.
Nothing will change by itself. Monthly shots can work better for someone who is non-compliant. he can get better with right combination of medicine and his delusional and paranoid symptoms will start reducing…
It has been a long journey for me. I have been dealing with my son’s illness for 3 years now. his issue is major non-compliance on meds and I had given in the past 3 years at times let him do what he wants but he ended up homeless and putting his life into risky situations. I kept following his steps where he goes and searching for answers and forcing him into treatment. he is better now but still a way to go before he can take care of himself…
The road of Mental illness recovery is hard and shaky. there are a long struggle along the way, but when you see your son or daughter improving a little then you feel rewarded and your forget all your struggles.
Thank you for your prayers and kind post. I feel exactly the same, like I can never give up on him and I don’t think I could stand myself if I did. The darkest points make it hard to keep going especially when everyone else thinks we should give up. It is good to hear from someone who has been through it and understands and hasn’t given up. How did you go about getting court ordered treatment for a year? My son only got it for a few months when he was under 18. Now that he is an adult it is so hard to find help. All the decent physicians give up because he refuses help so we are left with the community clinic that doesn’t care if the clients show up or not. It is just so sad.
Yes, I understand. My son has similar diagnosis except he wanted to travel from place to place and put himself in risky situations. He had traveled across 4 states since 2015: between Virginia, Arkansas, Texas and California.
Here is my story in Summary:
My son was in College for 4 years and working part-time. His first episode was in June 2015 where he drove from Virginia to Kentucky and hit his laptop and his cell phone. He started taking Zyprexa 10mg for couple of months then stopped after checking the side effects. He had another bad episode in December 2015 that prompt me to involuntarily commit him in my state and he was hospitalized for 5 weeks & later he was discharged and did not want to continue on his meds and left my home & was traveling from Airport to Airport for about 15 days using his credit cards calling relatives & cursing me and all my family. Finally, he ended up in California where my brother is. He was suicidal asking me to give him all my money otherwise he will kill himself. Contacted law enforcement and he was hospitalized hen discharged after 10 days and stayed with other family friends. and did not continue his meds. which lead to more physcotic episodes and Hospitalizations.
He had more Physcotic breaks in California between 2016 and 2017 and was hospitalized multiple times and was in jail one time. He came back home last April and I started the Guardianship process which was Hell. The guardianship helped me to get him Social security and Medi-Caid, otherwise he would not apply himself.
He disappeared for 2 weeks last December in California & I was so much high anxiety last December/2017 trying desperately to find him. Finally, he was found in a Hospital.
I had wrote a page summary of all his episodes & his Hospitalizations and send it to Mental Court in CA and to a Politician Assistant in mental health office in Santa Clara & to DA attorney and to his Public defender & psychiatric and social worker and I had showed in document that My son can be a danger to himself and to others. I had begged the psychiatric to conserve him.
Finally his psychiatric requested for him to be conserved in the county where the family friend had hosted him and he stayed in Hospital for about 7 months and now he is in a Locked Rehabilitation Facility
As of now, we are still trying to find the right medicine dose. he has been on a monthly Invega-Sustena shot of 117mg then recently 156mg. will request to increase it to 234mg in the next month. We are hoping to get him compliant on oral medicine…
He is still delusional but I am hoping that the higher dose he will get him better.
As you see, the struggle continue
Correction in here.
His first episode was in June 2015 where he drove from Virginia to Kentucky and he had hidden his laptop and his cell phone behind bushes…
There was a terrible event that preceded the court order. What I was able to do was provide as many medical records as possible to the court.
Doctors gave up on him and “discharged” him from entire practices. I was able to find a a great and compassionate doctor who saw him as often as possible (sometimes he wouldn’t go to the doctor at all) and also did not require him to take medication as part of being a patient. I realize how rare this is, but the doctor is part of a clinic that treats people in need and all the staff is great and understand these needs. Still, he just became more and more psychotic until the terrible event, but they really helped us after that and made a huge difference in the experience.
The therapeutic alliance between doctor or clinician and patient can take many months or years to establish with people who have severe symptoms of these illnesses. The best professionals know this and accommodate, so if the community clinic (which is where we found the great doctor and staff) is not kicking him out, then maybe they understand this? I hope so.