still coming to terms with the diagonis my son received a week ago. I don’t know what I can do to help him. He doesn’t want me to contact his doctors and unless he gives written permission, they will not speak to me. He lives with us still so I do think the family should be involved in the treatment, but the laws in Germany are very strict when it comes to privacy.
My son is 21 years old and at the age that he doesn’t want his mother to be involved, but how can I help him if I don’t know what’s going on?
How did you, parents, partners, siblings, deal with this situation.
Welcome to the site. I recommend you learn as much as you can about the illness - reading up in books and on this web site.
Yes - privacy laws are a hinderance for many families in Europe and North America when it comes to treatment and schizophrenia. In most countries - while they prevent you from knowing what is going on with the treatment - the good news is that usually the treatment team will accept information from you - and assuming he lives at home with you - you can still provide them a lot of information to them about what is happening with your son and how he is responding to treatment. I’ve seen many doctors talk about how they also see these laws as a problem - but they will work to do their best to work with you and still follow the laws, but they want the best for the patient too and so will work with you as they know that parents want the best for their children.
Some parents I know talk with, email, and leave phone messages with the treatment team people when things are not going in a positive direction with their adult children - when they are not sleeping well, when they are not eating well, when they seem depressed, etc. - let the treatment team know. They may not get this information from the patient.
Also - there are some good treatment / pre-doctor’s meetings check lists out there that people use to make sure that their doctor meetings are as productive as possible. You might share these with your son, or the treatment team:
the 2-COM is a simple tool that can help people discuss their needs so that there can be better communication and changes in clinical management.
While laws may prevent medical professionals from sharing information with you, it is useful to remember that there are no restrictions on you communicating to THEM. You might be able to provide valuable background, insight and updates. When I was in that position, I would begin conversations with - “I know you can’t share anything with me, but I would like to make sure you have all the information you need to help my son.” They are also allowed to ask leading questions to get information that they need.
In addition, I have used hypothetical statements to obtain information from care providers without needing them to speak specifically about my son.
Thank you so much for your reply. So far my son’s doctors have refused to talk to me. I wanted to give them some information which I thought would be helpful, but their secretary would not give me an appointment. It’s all very frustrating because my son went to a clinic to treat his depression and received this diagnosis. He’s never had any crisis or showed any symptoms of schizophrenia, so I don’t know where this is coming from. I went to visit my son and he told me that was the diagnosis and that he was given Abilify. I haven’t been doing anything else these days other than reading about this disease trying to understand it. That’s how I found this forum.
I love my son so much and I wish I could help somehow. After all, he’s coming back to us when his period at the hospital is over and we should be informed. I just don’t understand why we have to kept in the dark like this.
I’ve been trying to convince my son to authorize my visit to his doctor. I still hope he will change his mind.
Again thanks for your reply and for all the information. It’s good to feel that I#m not alone.
Valleypenne, I haven’t even managed to go past the secretary. It’s so frustrating. I don’t want them to tell me anything, I want to provide them my son’s history, things which I do believe will help in his treatment and even a more precise diagnosis. But I have been kept out. I am terribly frustrated. Our family doctor suggested I should write them a letter, and that’s what I’ll do. At least they will read it and have some information about my son.
Also, while your son is in the hospital, you might try contacting the support service people there - here, social workers are typically assigned to patients, and they are typically receptive. Continue to call the nursing staff, express your understanding that they cannot tell you anything, but request to be passed to the case manager or social worker.
I know it can be very difficult - I have had times when I have had conversations such as, “Well, IF my son is there, tho I know you can’t TELL me he is there, but SUPPOSING he is there…”
Diagnoses change frequently - so don’g get too hung up on the diagnosis. He could have depression with pychosis, or any other variant. The important thing is he get treatment. Perhaps also try to get him to see a therapist - as that can also definitely help.
I live in France so I know what you’re talking about. I was also going to suggest the letter route. It’s normal that they won’t talk to you. You should know that when people become ill there is almost always some element of paranoia, and the number one object of that paranoia is you. In order for the psychiatrist to have a good working relationship with your son, the doctor can’t be chatting with the enemy. He may or may not feel like that right now, but even if he doesn’t, sooner or later he will. The therapeutic relationship is really important. I remember when my husband was diagnosed, I thought to myself, thank God he talks to his psychiatrist, because whatever he said that made her come out on the side of schizophrenia, he wasn’t talking to me about it. I had a hard time believing my husband’s diagnosis at first, because I hadn’t seen the obvious signs, like a break from reality. But the medication made him feel so much better. Be thankful that he’s been diagnosed, and that he seems to accept his diagnosis.
I went to a program called ProFamille here in France, and I think they have an equivalent program in Germany. It was very helpful. It taught me about the disease, and how to deal with my husband when he’s having an episode.
As valleypenne said you may have to make a pest of yourself. If and when you do get through to someone, let them know your son lives with you. Then explain that you need information about how you can help your son. This does two things, it lets them know you are willing to learn ways for both of you to cope, and they may direct you to a support group in your area. Persistence is the key.
I can very much identify with what you are going through. My son was diagnosed around age 20 and later hospitalized. One of the most beneficial things I did was keep a notebook which held dates and corresponding behavior often with quotes from my son. When he was involuntarily admitted to a local hospital and then transferred to a big state hospital, the first thing I did was call the hospital, and then fax my typed notes for the doctor there. A history can be very important. Seventeen years later, I have kept up this habit. The doctors have so little time with the patient that I think this is very helpful. Also, now seventeen years later, he is receiving outpatient treatment from our local community mental health and doing well. Life is a series of ups and downs but I am thankful for every good day.
I haven’t been able to come online to check replies and to answer to you guys. But thank you very much for all your replies. My son came home for the weekend today. He’s taking Abilify and told me he feels agitated and can’t concentrate. Not sleeping well either so he said he doesn’t want to continue taking the medicine. As for the symptoms, to be honest, I don’t recognise any of the symptons and that’s why it’s been so hard for me to accept the diagonis. I talked to my son today and he seemed to have finally accepted the idea of me talking to his doctor and told me he will give his permission when he goes back on Monday.
Thank you sacred. I’m getting in touch with an organization for relatives/friends of people with mental disorders here in my town. I’m looking forward to the next meeting, but I believe it’s not a meeting specific to Schizophrenia. My son in a special clinic, not really a hospital and he has therapy sessions there. He will stay there till July 6th. I really hope he will let me talk to his doctor. He came home today for the weekend and we talked. He seems to be more open to the idea.
i didn’t give my mother permission to talk to my doctors, and my dad didn’t give my mom permission either. I didn’t give my mom permission since she isn’t a part of my everyday life. My dad didn’t give her permission because he didn’t want her to know his diagnosis and knew she would want him to take medication. I hope your son does give his permission to talk to his doctor. Maybe they can give you some insight into his diagnosis.
Hello cbbrown. My son lives with us still and I am very much part of his every day life. He always comes to me for an opinion when he’s in doubt or confused. He was the one who told me he had been diagnosed as schizophrenic and was very surprised and scared himself. I can understand him not wanting me to know what he said to the doctor, but I keep telling him that all I want is to understand and help him. After all, he is still at home, and will be for some time until he manages to finish his studies and finds a job. I find it’s important that we all are involved so we can live in harmony as a family. He tells me he knows that, but he wants to fight this on his own and become independent. I can understand that too, and I told him I don’t want to interfere with that and maybe exactly because of that, I need his doctor’s help. The fact is that I’m not even sure he’s been diagnosed correctly. It came as a big surprise to me and after reading a lot of information about it, I still can’t see the symptoms on him. Maybe there are levels of schizophrenia? Some are more affected than others?