Family and Caregiver Schizophrenia Discussion Forum

Lost and defeated on how to help my son and save our family


#1

Our son is 19 years old and began getting ill at age 17. His illness has progressively worsened to the point that he does not function. He doesn’t want to leave the house, barely eats and has lost 30 pounds, smokes like a chimney, won’t bathe, won’t take medications or vitamins to help his condition, cannot hold a conversation, has stopped talking to everyone including family. This started out as depression and suicide attempts, he started using recreational drugs and progressed to psychosis and mood disorder with a final diagnosis of schizoaffective bipolar type. He has been in the acute care hospital 13 times over the past 3 years and they start him on medications, he improves in some ways and then stops the medications every time. He is so inattentive and unpredictable that we don’t feel safe leaving him home alone therefore we are unable to do anything to help take care of ourselves. We can’t go to counseling or support groups, we can’t socialize, we can barely take care of the things we have to because someone always has to be home with him. We don’t have anyone that can help us and we are so distressed and tired and our family has basically fallen apart. Does anyone have any advice or insight because we can’t go on much longer like this. We would do anything for him but he refuses to do anything to help himself.


#2

@Brokenheart17 - You have landed on a very supportive, helpful forum. Welcome, sorry for the reason you are here. You will get a lot of good ideas from folks here who have been in your place - you are not alone! Is there any way you can try to get court ordered medication for your son? What country/state are you located in? The options vary so much from location. Does your son still eat food you make for him - or does he think you are poisoning him? Try to keep the trust open between you and your son. Read and/or watch videos by Dr. Amador -I’m not sick I don’t need help, This will give you some tools to possibly get your son to stay on the medication. My son? Went through years of nightmares - finally he is on court ordered meds. Many other people will chime in. Stay with us.Hang in there.


#3

if you are in the State of California. you can ask the psychiatric doctor at the hospital to Conserve him and he will assigned a public guardian and keep him in Hospital for a while like 6 months then he will be transferred to a locked facility until he gets well. this will take time but your family can have some time to breath.
your do have to prepare a document to list all his episodes by date and what happens in each episode and how he was treated. I can email you a sample document to help you follow it. this helped me to conserve my Son and keep him safe.

if you are not in the State of California, you may want to contact a legal office/attorney and ask for help. Possibly look into getting guardianship so you can force him on taking to hospital when he stops taking medication. Not sure how much it will cost in your state. you may be able to do it yourself bu need to research it.
Good luck I know it is hard dealing with this horrible illness.
praying for your and your family.


#4

I would prepare a document of all his episodes… this way you have it handy when you to provide to doctor, social worker or law enforcement when needed. the document will show that he is unstable and may be dangerous to himself and other when he is not medicated…


#5

@CAAR2016 Very good idea. I had pages that listed what had happened so when it came time to fill out the letter for the medical emergency hold it was easy to do. I also had photos, which they like so they knew they were taking the right person.


#6

I am so sorry you and your family are going through this.

We went through similar.

Just keep getting him to the doctor whenever that’s possible. Learn the laws in your state and use them to help him when and IF (a big if) you can.

His seeming refusal to help himself is part of the illness. You can only do so much.

The only thing that helped our family member was court-ordered treatment with injectable medications and lots of supervision. The heartbreak of these illnesses is so intense and not being able to leave the ill person alone is untenable, yet I also lived that way for a long time.

I hope the very best for you.


#7

He was court ordered for 6 months, and he was compliant and was given injections but they had multiple side effects and weren’t working very well…he has some DNA issues that complicate which medications will work well with him…he started refusing to take them after the monitoring 6 months were up and went through horrible withdrawal. He thinks that we are putting medications in all his food or drinks therefore he won’t eat anything we make. He has so much anger toward us for having him hospitalized when he first started having suicidal thoughts and then many more times for having violent outbursts. The acute treatment here is pitiful. The patients are just given meds and they just pace the hallways all day and night with no counseling, stimulation, or caring help. It is more like a holding cell. I am so disheartened by the lack of help for mental health. I called his doctor the other day and told her that I feel like we are crying out for help and no one is listening. People only tend to listen in mental illness cases after it’s too late.


#8

Thanks for your reply. I hope with time we will figure out how to get him to be independent. I just wish we could get some respite every now and then.


#9

I need to get better at documenting the episodes, I do take pictures of the destruction and sometimes video his rants with my phone.


#10

Is your son on your insurance or is he on state Medicaid?


#11

Hello brokenheart17 and all of you,
I have to agree with brokenheart17, you can only get the help you need after it’s too late. I believe from my personal experience with my son, health systems do not want to pay for preventive care, its too expensive, and why? when we can put it on poor defenseless families, who have no idea what is in store for them.
It sounds like you have experience with your son’s condition, but now what? This is similar to what happened when my son was first released from a rehab center. They just put you on your way, thinking all is well and then as your loved one declines, there is no help!
Another involuntary commitment is needed due to his health. Talk to his doctor and make sure he is aware of your concerns. It takes documents of your sons illness to get him into care.
I feel for you and your family take care
AnnieNorCal
Edit: You can go to the court and ask for help to get another commitment, because you have the right to do what’s best for him while living in your home. Like you said he is not capable of understanding what he needs, you have to help him even though he may get mad and before it gets really ugly.


#12

[quote=“Brokenheart17, post:7, topic:6487”]
he was court ordered for 6 months, an
Brokenheart17,
I understand about withdrawal Symptoms. My son escaped last year from my home after being put on 234mg Invega sustena. Upon his discharge from hospital, the followup doctor tried to explain to him that he needs to stay on it otherwise he will go through relapse but my Son refused and ask to be on Seroquel. I knew that seroequol would not help him. he started getting worse and since I have the guardianship, I started forcing him to take meds but he would refuses and end up taking him multiple times to ER… they would release him immediately because he would take the meds at the hospital but when he comes home he would not take his meds. he was taking so much of my daily energy.

Finally he left my home and went to CA to stay with a family friend. he started having several withdrawals symptoms in CA like severe headaches and suicidal thoughts and was hospitlaized several times there.

One doctor told me once that Withdrawals symptoms are severe after someone is on a short period of medicine and withdrawals symptoms are less after someone being for long period on medicine
I understand about Holding cell. Only private hospital can put the efforts because of private insurance but who can afford private insurance for an Adult MI son or Daughter. the private insurance would want to drop them. I ended up taking my son off of private insurance recently. they have a X$ of lifetime Cap that can be spent really quick for someone with MI.
My son was treated as very special person when he was in private hospital in 2016. they did 1-1 therapy, group Therapy. Music, TV, Movies. different activities. Hospital charged close to half a million for his treatment. he was a lot better when he was discharged and was given like a big bag of medicine but it was too much to take daily… he ended up not following up and relapsed in few months

You just have to keep at it. Do not loose hope. they say the older they get, the less psychotic break they have.
try to keep him safe for the new several years. hopefully he will get better in 5 years with little medicine


#13

He is still on our insurance but has Medicaid as well.


#14

Hi
I am in Northern California and sole caretaker to my 21 year old schizophrenic son. Where in CA are you referring to? I am having such a difficult time getting him any help. He has Kaiser and medi-cal. His illness began when he was 15, he’s been in and out of many hospitals and step-downs, but they always say that they don’t have anyplace for him to go as far a residential treatment. Thanks!!


#15

In our state, with Medicaid there is an insurance company tied to the medicaid program. They provide some essentials, it could be respite care is available. Its usually not a lot, but might be worth looking into.


#16

Cher,
My son was admitted to Valley medical in San Jose, CA and was there for almost 7 months. he is now in a step down facility in San Jose ( crestwood ) and he has been there for 4 months. the next step for him after he get stable is a group home then a residential facility. My son is conservator; means he has a public guardian. id your son Conserved? if he is not conserved, I am not sure if he would qualify for residential treatment program.

what part of northern California. here are some contact info for you:
Contra Costa Mental health:
https://cchealth.org/contact/

Santa clara/San Jose mental health:
https://www.sccgov.org/sites/bhd/info/MentalHealthBoard/Pages/default.aspx


#17

That is interesting. I am in CA. I have a unofficially adopted son who is now 28, been with me since 22. He has progressed to Schizoaffective and believes the sheriff is following him everywhere and that they planted a tracking device in his ear. Insists we are all medicating him thru food and by touching or spraying him with it somehow. He isolates himself and washes his clothes 24/7. We have told him he cannot do that as it is costly, he does not care and does it anyway and laughs about it. He pays for nothing and has lost a lot of weight from not eating due to his paranoia. He has filed numerous complaints with sheriff for what he believes is harassment. He stands outside and flips off people driving by. He is on probation and sees a therapist. We have not been able to do anything for him because he is Anosognosia and insists there is nothing wrong with him. He does not present any danger to anyone other then his obnoxious behavior so therefore we are told repeatedly they will do nothing for him. His behavior has become so outrageous and when we speak to him about it, he replies “he will just leave” but he never goes anywhere. We love him but cannot continue living with his behavior and disrespect. How else can we get him assistance??? He has never been hospitalized for the illness but yet everyone knows he is not well. We are beyond frustration and patience and desperately need help. How long would it take for him to apply for disability and receive it? refuses help as he thinks we are trying to do something to him.
My heart aches for all these people and caregivers.


#18

So true, there is little to no help for MI. I have spoken to county, jail, probation, DA and anybody that will listen to me that there is not enough being done for our MI. Then when they do something illegal, they are arrested and put in jail with others, which compounds the issues further and gets them into a cycle with jail on top of the MI. We need to do better as a society to help these people just like we would for others who are ill. This is suck inhuman treatment for these individuals who certainly do not chose to be sick. Just plain crazy system that helps little to none. There has to be a better way for all of us. I am still fighting the fight and so frustrated.


#19

Somehow, @brokenheart17 each of us has to find ways to get some “me” time, or time out with our family members away from the MI loved one. I do understand that is what you are asking advice on, and I can only state that you must find a way. Burnout is common with any type of caregiver whether it be for cancer, dementia, or mental illness.

This is year 3 for me: the first year we never left her alone, by year two I had a “safe” bedroom in two of my friend’s homes that I could escape to for an overnight, leaving my husband at home to guard the house. By year three, my husband and I could leave together for an overnight trip out, and we did so several times. Unfortunately by then, my husband was escaping into alcoholism also binge drinking a few times a week. All along we would at least go out for a drive or a walk or a coffee but it is taking its toll to always be so stressed.


#20

You can always do NAMI family to family online or watch you tube and Dr. Michael DiPaolo nami, How to survive and Thrive. Clozapine gave my grandson his life back. He works fulltime now and is making friends. I wish you the best