My son quit meds


#1

My son was diagnosed a little over 2 years ago… he agreeably received in Vega injection for 2 years and was stable… tired mostly… a little sore arm… but for the most part doing ok… then the nurse hurt his arm bad and he vowed never to get an injection again… he agreeably switched to pills… which I would give him every day… long story short either the pills weren’t working or he was spitting them out… his behavior became stranger and easily agitated etc… I finally said that’s it… back in injection or you can’t live here… well he refused and so he’s been riding around in his bike sleeping who knows where for almost a week. He knows he has sz but said he hates the way the meds make him feel and that I only want to kill him. My son is 22… I’m crushed… I can’t get him to the hospital cuz he’s not a threat. Is it possible to live and function with this sickness with no meds??? I feel like I’m waiting for something horrible to happen :confused:


#2

I know the feeling of waiting for something bad to happen.
I’m sorry you are trying to deal with that kind of situation.

I don’t have any answers for you.
For my brother, I just tried to be a good example, a good friend, and a good brother… While also trying to take good care of myself. I had to give myself permission to let him make his own choices.
It might not be the best advice for you, but that is how I chose to handle similar circumstances.


#3

Does your son have access to money? Any idea how he is eating? How do you know where he is and what he is doing? If he is not taking care of himself (food or otherwise) he could now or eventually possibly be “of harm to himself”. It seems each location is so different in how they look at this. While it seems awful, one week is not a long time. If he gets tired of living on the street, he may want to come back home. I encourage you to keep your established boundaries as he will unlikely get better without meds. If he remains “homeless”, you could contact homeless shelters and the area’s Mental Health Department and look for services to the mentally ill, such as Mobile Assessment Teams that can be called for an assessment when a situation gets bad enough. Sometimes “hitting bottom” can be the necessary event to get the person on meds. I also suggest reading the book “I Am Not Sick; I Don’t Need Help” by Dr. Xavier Amador. You can also read more about this at LEAPInstitue.org. This is the go-to for serious mental illness regarding lack of insight (anosognosia).


#4

Some of our family members do live and function without meds. My son does, but its a very, very limited life and he is not able to function enough hours to support himself financially. He is on disability and works a handful of hours a month at a part time job that does not have set hours. He worked with a therapist who helped him use Cognitive Behavior Therapy to have some sort of function when he leaves his home.

I have felt like I am constantly waiting for something horrible to happen. Its one of the reasons why everyone advises that family members need therapy. We have to work on ourselves to keep our own anxieties in hand.

We family members often need help dealing with the stress and struggles of having a family member with a brain disorder.

I am so sorry your son stopped taking his meds. Take care, Hope


#5

@Donnaod,
It might be a good idea to inform authorities about your son. (you probably have) so sad and heartbreaking. Can you find him and talk to him? Let him know you want him to come home? There are rules to follow, I read here all the time, that it is okay to have boundries. MI people are capable of understanding, maybe their reasoning is off. It may appeal to him to sleep in his own bed and shower. Just some caring thoughts. I can only imagine how hard this is for your family. AnnieNorCal


#6

I take Invega 234 mg up from 156. It IS super painful in the arm and leaves a big, painful lump. It must be massaged to get smaller and make the medication disperse better. That said…

Is he on a large dose like me? Did no one ask him to try the hip? I can confirm that the shot in the rear/hip if far less painful than the arm. I was pleasantly surprised at how much less. I purposefully tried the larger dose in my bicep this month to see how bad it hurt.

I also alternate. Right bicep, right hip, left bicep, left hip and back again. This gives each site time to heal because of the big lump.

Maybe if you tell him that you heard from someone who takes it he will listen. It would also help if the nurse paid attention though sadly some seem to think they are the expert yet have never had the injection!

Also…pills of any kind are more likely to have immediate side effects. When I took risperdone consta shot I did not get the same daily fatigue or demotivation.


#7

Wow ZombieMombie, this idea of alternating hip and arm could be extremely helpful for us. My son is at 234 mg. Thank you.

The thought of him refusing the injection frightens the hell out of me.


#8

Donna, your story is our worst nightmare. I’m so sorry this is happening to you all. Our son is also 22. He’s been on Invega Sustenna for 12 months. Every month, I cross my fingers and hope he’ll take the shot.

What state do you live in? The ability to get involuntary treatment for family members that are “decompensating” depends on the state you live in. If your son is living on the streets now, that to me sounds like he is a “danger to self” and in need of involuntary hospitalization and treatment. Would your local hospital and police department agree?

Have you offered him money to take the injection? I’m sure you know this, but the longer he is off the meds, the less rational his thinking will become. It sounds like he’s already pretty far gone. It’s so awful.


#9

Great information! Thank you for sharing. I’m sure I will have an opportunity to help someone else with these ideas.


#10

@hope4us and @Day-by-Day

Happy it might help someone. Thought it might be nice to pop over from the Dx’d side to give some posts from the point of view of one ill person. Just remember that what works for me might not work for others. I hope it does help, though.


#11

Anything is worth trying. Where I live, a person has every right to live “on the streets” if he wants to as long as he is not breaking the law or causing trouble. There are a lot of homeless people that live at the airport and they are allowed to do so. In some states there are teams that go out into the field and develop relationships with people they encounter. Over time, they attempt to gain their trust and try to get them help or to a homeless shelter. But the person has to comply. Yes, I have heard of persons with SZ surviving without meds. A quality of life (defined by most) without meds is highly unlikely. But that could be different for the person himself.


#12

Yes. How well depends…on the type of sz and even the day. It is changeable.

We are about 15 or so years into this journey. In late teens things seemed to fall apart. In early 20s first hospitalization occurred. Long story short a bit over a year ago he declared he was done with trying to find the right drug or combo there of. Probably the darkest of the entire journey but after several months, he began stabilize. He lives alone and keeps his home reasonably clean. He cleans up when going out and it may take 5 trips to the store to actually go in, but he shops for himself. His conversations can and do take some strange turns.

It is bumpy. This summer he became suspicious and angry, so we stepped back. We have told him if we think he is a danger to himself or others we will force an involuntary admit. We also have told him there are standards of behavior, illness or not, we expect from everyone–no violence, watch what you say, absolutely positively NO illegal drugs when he is in our home. It may well be he has reached a stage in his illness where symptoms are lightening and he has learned enough coping skills to get him through.

Do I recommend forgoing meds? No. However sometimes you have to take a deep breath and wait it out. We cannot ‘fix’ this, but we can learn to live with our new normal.


#13

My son sounds a lot like your son. He is 32 and quit meds 2 years ago. He quit cold turkey and he became violent towards us during withdrawal. He now lives alone in an apartment with his cat. He keeps it reasonably clean last time I saw it. My son does go out each day. He has no car or job. He has no friends and is very lonely. He will talk in ways that make no sense so I think that turns people away. He posts things on Facebook that make no sense. He acts like a teenager. As of January, social security let him be his own payee. He is paying his bills as far as I know. Unfortunately when he quit his meds came a hatred for us, his mom and dad. We his biggest allies are now not a part of his life. We miss him so much. I think he blames us for his illness and what his life has become. He has accused us of a lot of things that aren’t true. I think street drugs might be in the picture too. We just pray he gets clarity some day and comes back into our lives.


#14

Hello @Lmr,
I understand what its like not having any contact with your son. My situation with my son Lou is very different from most. Our family has been through alot, really thankful to have this community. Take care AnnieNorCal


#15

I am sorry he has grown suspicious of you and blames you for his illness. My son at times has blamed me for many of his problems when both medicated and unmedicated. It all depends on how well he is handling stress and his level of trust for us.

Street drugs make a bad situation worse. My son is anti drug–and he includes street drugs in that, but does sometimes binge drink when he gets to his “F it moments”. Then there is no clarity. And I will not have anything to do with him. The insanity of substance abuse is harder for me than his odd conversations, obsessions, and paranoias.

Hang in there, though, as you never know what might resonate with him and bring him back into your life. In our case, one time, it was a conversation with a complete stranger.


#16

This is exactly where our relationship is with our son. He has delusions that we have abused and tormented him.


#17

He has accused us of physical and sexual abuse. He says I stole money from him when I was his rep payee. He called the spca and police on us. But sometimes he has moments of clarity and will call and apologize and say he doesn’t know why he says those things. I get hopeful that he is getting better then it starts all over again in a few days. Haven’t heard from in since August 12, his birthday. We dropped some things off to him and his only words were “You are not welcome here”. He took the gifts we brought of course.


#18

“Hang in there, though, as you never know what might resonate with him and bring him back into your life. In our case, one time, it was a conversation with a complete stranger.”

Thank you! This does give me hope. Maybe some day someone can get through to him


#19

We don’t get the moments of clarity like you do, the delusions that we have sexually abused him are deeply imbedded in his mind. He told us he has reported us to some national sexual abuse network. He reported to the local authorities that we were sexually abusing him. They called us and asked us if we could get him to stop calling 911.

He called relatives he hadn’t seen in years asking them to get us to stop sexually abusing him.

He believed that we yelled at him constantly to keep him from getting any sleep. When he lived here we were often woken up in the middle of the night by him acreaming at us outside our windows.

It would be amazing if somehow those delusions went away some day.


#20

I know parents who were investigated by DFACS twice for child abuse based on statements from a teenage daughter with SZ. As a young woman, she eventually “hit bottom” and is now living independently with the help of a loving family, meds and talk-therapy.