Family and Caregiver Schizophrenia Discussion Forum

Life Has A Way Of Biting us

Life Has A Way Of Biting us.

I had posted several post about my son illness in the past 3 years.
he was non-compliant on medicine for long time and he is still do not have enough insight about his illness but he is safe and doing better.
he has been doing better in the past year and taking Invega-shot and Clozaril.
he was much better 2 months ago prior to moving to last facility.
He is in California. Recently het got with a fight with another patient at the facility and I found out that he was not given the recommended dose of medicine set by the doctor from prior hospital
He is now back in county Hospital and hopefully they will get him stable again.
I have been visiting him three times a year but he still not nice to me because he thinks I am the reason of him being conserved and locked in facility.
I am getting ready to go visit him again next month.
I sold a real estate property in Virginia on the hope that I will move to California soon so I can get him out of the Facility and care for him myself.
things are not moving fast as I want!!
Started looking for work in California couple months ago and not luck yet.

I am still working at my current job in the Mid west and I am about 3 years away from my full retirement.
I am just missing my son a lot and I wish I could have been there for him on his Birthday yesterday. I could not get through the phone system at the hospital to even wish him Happy Birthday and hear his voice.
he is restricted from visitation right now and the family friend left him a piece of cup cake with birthday wish and he could not see him.

What a life, another year without being able to celebrate my Son’s birthday with him.

I want to be part of his life and yet I still have to keep earning to save enough money to buy a home in CA.
California is expensive and I know I have to wait for the right time to Move.

I am counting the days since I am closer to my full retirement and hope to be able to get a decent retirement income at that time!
in the mean time, I am missing out being close to my son… Frustrated and in Pain at time.
I wished I could had drink alcohol last night to reduce my agony and pain.

will keep praying about my Situation.

Just venting out my frustration…

1 Like

@CAAR2016 I am new to this website so I really don’t know what you have posted before. I feel your pain not being close to your son. My son does live close by and he too does not have insight into his illness. I want to take care of him also, but because of his lack of insight it is making it a risk. I previously had to have the crisis team intervene at least 3 times and it is extremely painful watching your son being taken down. I pray everyday that he will get into a recovery stage so he can live with me, or we can work on getting him his own apartment near by. He does not understand why he can’t live with me, which is so hard.

I am retired now, and live in a retirement community. My neighbor, who is a retired police officer, had questioned me if having my son live with me be a smart move. I sensed that he is not supportive if I should need support if or when my son is ever able to live with me.

I was guardian of his person until the current psychiatrist felt that my guardianship was hindering him from getting to recovery. So now I have no authority to help him, he is under the AOT program which is under the county court. Which in a way I am grateful because my son is verbally abusive to me as he does not understand why he just can not live with me. So sad.

My son and I were very close, and I miss him even though he is within driving distance. I will pray that you are able to move to be closer to your son. Have you or are you able to have him move closer to you that isn’t as expensive?

1 Like

There are so many things in life that can attack our joy. There are many illnesses, accidents, hurtful relationships, etc. But this is a particularly hard one. Our son’s birthday one year was spent in the hospital when he was not eating (not even the ice cream we brought him) and not saying a word to anyone. This year’s birthday was SO much better since he is finally on medication! Keep hope for a better future!


Why did they not give him his proper medication? I’ve heard of this happening many times and it makes me so mad?

In most states, the law is such that a person can refuse medication and it cannot be forced without an AOT (which usually means there was some “criminal” activity that occurred), although I am not an expert on AOT. In many states, even with a guardianship, medication cannot be forced. “Proper” medication can be difficult to determine and can even change over time. How does any doctor know what is “proper”? All they can do is try something (a single A/P, cocktail, or other treatment/counseling) based on the known symptoms and then it takes time to know how well that works.

@hope4us in response to your quote: "
In most states, the law is such that a person can refuse medication and it cannot be forced without an AOT (which usually means there was some “criminal” activity that occurred), although I am not an expert on AOT"

My son is in an AOT - which stands for Assisted Outpatient Therapy (I believe without having the document in front of me) and he has no criminal activity against him. I was asked if I wanted my son to be considered for this program ,that is I believe federally funded. It is to help those that have a severe form of mental illness, including other criteria that has to be met, to be eligible. There is an actual hearing to authorize a client to be accepted into the AOT. My son has had many hospitalizations, that is why he was accepted. This program is to try to reach out to the clients that the need is severe to help them get into recovery. Although I believe it is grant money, the county actually oversees the program. The team consist of a program manager, program assistant, nurse, case manager, peer specialist, hospital liaison, probate liaison and AOD specialist. Since my son has been in the hospital for several weeks now, maybe 2 months, a hearing was held to transfer his treatment to the hospital from the AOT while he is hospitalized, plus another hearing for forced medication by the hospital. I get notices of the hearing, which is usually received the same day as the hearing, but I never get a copy of the outcome. I am clueless at this point as to what medications he is taking or is given, either forced or accepted by him.

I am kind of referring to something different. A family member was forced to go to a psychiatric unit because of a suicide attempt. She had an illness that caused debilitating pain and took a bunch of pain medication that she wasn’t prescribed. She was prescribed a pain med, but it wasn’t strong enough. When she finally got checked in the dr wasn’t there but without talking to her he decided on his own to cut the pain med by half. He didn’t talk to anyone about doing this and it made her go in to serious withdrawals while there. Her regular doctor wasn’t happy and pulled her out of the unit. I am just unclear how he was able to do that on his own without looking at her charts and without even having knowledge on her diagnosis. His rationale was that he didn’t believe in pain medication.

@Dudley I can identify with this so much, but they have explained to me so many times that if the person refuses to take medication (unless they are in life danger) they cannot be forced. It is a Human Rights issue… If it wasn{t like that, and I had a problem with a family member, it would be easy for me to get him admitted and on medication and out of my way for some purpose (financial for instance) it is to prevent such cases that no one is forced to take meds they refuse to take. I feel that schizophrenia is different because they do not really know what they are doing but… These are the rules!! And I have come to accept them…

@hope4us, it is the same in Austria!

1 Like

@spanky, I am so sorry for your pain. I know it too well!! And the dilemmas that come with it… I hope that your loved one gets into a space in which he can accept help, and medication and his life changes. My son is the sweetest, kindest and most grateful person when he is on meds. When he is not, he is a ranting mean aggressor.

1 Like

The issue is I could not take of my son in my State. he came to live with me after being discharged from Hospital/Facility twice and would not stay on his medicine and decompose and left to California. I think he is at a best place right now.he is conserved and the hospital/facility have medical staff who can take of him better than I do. I am busy with my Job and planning to safe enough to move to California. Hopefully in 2 years… .I am counting the days… Until then I keep praying and reaching out to a family friend who has become like a family member. he visits my son twice or more a week and keep me informed…

Sorry about grammar errors. typing so fast…
Continuing the conversation
there is not enough programs in my State to care for people with severe mental disorder.
California is one of the best state with programs for various disorder. I met someone who has been diagnosed like my son and he has been with California County for almost 20+ years and he is now 55 years of age. he just get accepted to a nice open Facility at a very reduced rate… he will only pay a minimal rent from his disability check. His parents passed away few years ago
but he is at good and safe place.
I am hoping that my son continue to improve with time…
God bless you all.

not sure why. he may had refused to take it or the doctor was trying to see if he still OK with lower dose. From talking to the Staff at the facility, she informed that he was taking his medicine…
He is little better now… keep praying…

Thank you for sharing this explanation! I am still trying to figure out AOT in my area…I think the actual ways it is administered vary. I hope that AOT proves to be helpful for your son! It is a positive attempt at real care involving a TEAM of support persons!

1 Like

We do what works given our circumstances and this is a hopeful step for your son and for you!

1 Like

I do not like pain medicine either… I tried not to take them unless necessary… My back was hurting a lot early this year and I preferred to go to physical therapy sessions instead of taking muscle relaxer and prescribed pain medicine…
May be this is why I could not help my son for a while. I was allowing him to get off the medicine when he refused to take because I kept at looking at the side effects and hoping that he will get better with a low dose… but after I saw how horrible the withdrawal effects of the antipsychotic meds, I get convinced that he needs the appropriate dose to get better. …

I assume you are referring to AOT as County/Public Guardianship.
for now until I am able to Move to California, I will keep him under Public Guardianship.
I do want to have a chance to be involved in his life at some point but I miss him. I hope it would not be more than 2 years… trying hard to work 2 jobs so I can save for my retirement and my Move to California.
Bets luck to you in finding AOT. I would check with a Conservator-ship lawyer or NAMI in your area. they will point you out in the right direction.

AOT seems to vary so much from one place to another. I guess in your situation AOT is like a public Guardianship? I have a personal legal guardianship but it does not provide or require any specific treatment. However, I am doing my darndest to help my loved one get needed help, treatment, and still respect the individual’s thoughts and desires.

1 Like