Stone - Agree with what you’re saying. My son definitely got worse while living with us, but during periods of being in jail, he actually did better. It seems like he does better in a very stuctured environment. My husband and I both work full time, so my son would be alone all day. When we got home at night, there were times when I especially would need a bit of alone time (because at my job, I answer phones, deal with the public all day), and he didn’t want to let me have any alone time because he had been alone all day. Although I understood where he was coming from, I was losing “me” in there because of my son’s demands on me. He was (is) so self focused that he couldn’t see his mom as a person who had needs as well. I’m no spring chicken - I’m 56 - and working full time, having a son who is ill and being the primary caregiver for him was draining me. On the weekends I would frequently fall asleep on the couch watching TV because I was just exhausted. I still feel completely exhausted and he’s been in jail since 7/2. All of us need to realize as caregivers, we have a job that many people do not have, do not understand unless they have been through it and cannot possibly fathom what it’s like on a given day to wonder what kind of mental state your loved one will be in when you arrive at home every day. Combative? Violent? Having delusions? My boss has a son who has muscular dystrophy and I know that must be very taxing also, but her son will not physically attack her. Our situation is very different from most people in a caregiver situation. Most people who are caregivers, the person they are taking care of are at the end of their life and failing physically. My son is 6’1" and 275 lbs. He is very strong, one of the best fighters I’ve ever seen, and has beaten up his brother, his father and most people he has ever encountered. Sadly. I think I am going through a mourning period. Mourning that our family life will never be the same. Mourning that holidays, birthdays, will never be celebrated the same. My son is super intelligent and wanted to be a doctor when he was a little boy, was in AP classes, on an academic team in grade school that competed, and I thought he just might have achieved that dream of being a doctor until this horrific disease took that dream and smashed it to bits. Just wanted to thank you all for your support. It means the world. I am typing this with tears in my eyes. I miss my son even though he is violent and seems like a stranger at times.
With persons who have anosognosia as part of their illness (@ half), staying on meds is always a challenge over time. Even with an injectable, the person has to be willing to go back to the doctor to get the shot (or in some situations a medically qualified case manager could come to the home to give the shot). However, on meds, the person has a greater chance of gaining insight to be able to see him/her self as sick and needing treatment. They can get therapy to learn how to help manage symptoms of the illness. On meds or not, you can have LEAP conversations with your loved one to counter the anosognosia and with patience and persistence, you have a greater chance to come to agree on things with your loved one and have a decent relationship. These things are all discussed elsewhere on this Forum. Do not give up. Dr. E. Fuller Torrey as well as other education I have received says that persons with SMI tend to mellow out over time. The severity of the illness over the first 10 years is often greater than over a combined 30 years. Early intervention is definitely best, but later treatment is still very valid and helpful for most persons. If not, have ALL meds/treatments been tried? What about Clozapine? Many doctors and professionals believe it is an under-used drug in the U.S. Some believe it should be first choice. What about ECT? Do the medical research. You cannot always rely fully on a broken healthcare system to bring about recovery for your loved one. Learn all you can. If you give up before all these things have been tried, it is your choice. You may not have the resources to do the things you would like, but you can ask, and you can fight for change. Get involved in advocacy efforts to change laws and treatment options and availability. It is hard, and yes, in some situations we have to let go. Your safety and health is important, too.
Thank you for your encouragement that things will not be as severe as my son ages. He will be turning 40 soon, his illness began in 2001 but was not severe until 2015. Since 2015 he has continually declined and he does not have any insight into his illness. I really have to try harder to learn LEAP because when I do visit him I sort of shut down. I don’t know how to respond to him so I just keep telling him I understand, in due time, etc.
Bless you for trying. I understand it is hard.
@LisaS, I’m crying with you, just reading your story. What a horrific realization, that the child you gave birth to and love more than anything, can potentially hurt/kill you. It really messes up a person’s way of thinking, that you have to protect yourself from a loved one. It really tests your strength and the mind sometimes just can’t grasp that concept. That you have to sleep with the door locked, and that you simply can’t trust him, it is beyond devastating.
Hope he can be placed someplace safe with 24/7 supervision and eventually gain insight and you two can have some sort of a relationship again.
I found when my sons treatment wasn’t working such as not taking medication. Drinking alcohol removes the effects of medication which has caused violence. Sometimes the medication is right and not effective. That has been my experience first hand and often why others have been in trouble with the law. A friend of mine, her son killed his dad because he wasn’t treated. Once he was in hospital, treatment was working straight away and then the poor guy had to deal with what he had done to someone he adored. My son use to have me on my toes but now he is on clozapine which is as good as you get in antipsychotics. He is regularly tested to see how much of the dose is in his system and tested for alcohol and drugs, which is always clear. I am fortunate to have this success. But it wasn’t easy to get it. My son had attacked my husband with a knife and we had to run for our lives. The police came and I had to push the fact that my son needed to go to a psychiatric ward and not the police cells. One cop disagreed and the other cop listened, so even that depends who you get on the day. Once he was in hospital, I took the advantage then to not have him back home so I could live my life and he could learn to live independently. Once discharged he moved into his own place but needed supports to help with cooking, cleaning and supports to take him out doing things he liked. I can’t have any expectations with someone with schizophrenia treated or not treated to function like they use to or like everyone else in society. People with schizophrenia are suffering and do not know what is happening and do not know how to help themselves. They need us not to give up on them and be there for them as much as we can. Parents of loved ones with schizophrenia need to learn and understand as much as they can about the illness, this will also help us understand the signs and the needs. Even after we do everything it doesn’t guarantee we can save them . Sad but true so love as much as you can.