I have been supporting my son who has a diagnosis of schizophrenia for the past twenty years and can safely say for about the first ten years it was a bit of a nightmare. I have read some of the post on here and can relate to everyone of them and even feel the pain family care givers go through, because I know exactly what it’s like.
Your son or daughter is given this diagnosis, drugged up so they appear stabilised and sent home in the charge of mostly parents. All you know is what medication they have to take and the dosage, but nothing else. You are left to deal with something you don’t really understand or how to help your loved one. When you ask anything you are told its confidential and come up against a brick wall. Thinking back on this and the lack of support caregivers are given, I think this is disgraceful, in fact I know it is!
As parents especially mothers there is an inbuilt instinct to want to fix something when your child (adult or not) is suffering or has problems. But with this diagnosis you feel utterly helpless, and we are because we haven’t been given the tools to know what to do only to keep feeding them medication.
This used to torment me, so much so I started researching on the subject and also the physical side of what happens internally to cause the symptoms. I also attended many seminars in different parts of the UK plus some one off course. Joined groups which had both caregivers and those with schizophrenia and also internet forums. Over the years I learnt quite a lot and included my son in all of this, gave him information and also stories about people in recovery. I also explained about the physical side involving glands in the body and brain. It took a time for him to take these things in, but with patience and perseverance we got there. The one thing I always questioned was these symptoms do not come from fresh air, something physically has to happen within the body to cause them.
Then there is the person who has been diagnosed we have to consider, we know as parents the pains and distress this causes us. But what about our relative? There is the stigma to deal with, they have grown up hearing this throughout their lives, what I could see in my son is that he internalised this. What he had grown up hearing he felt everyone looked at him like this. Some of the voices he heard were calling him a nutter or loony, day in day out, and other things that deeply distressed him. Its the stress that feeds the symptoms, talking and listening even reasoning with logic helps but never dismiss what the person thinks or feels. Because I talked and listened to my son a lot and heard not only about the voices but also visual hallucinations, I tried to change places with him and imagine how I would react if I experienced the same and believed it to be reality. When you try to look at it this way, you may see that the way your relative is acting or responding is quite normal, relaying this to them giving this understanding also helps.
When you think about it, it really isn’t right or fair that we are just left to deal with this alone, neither is it fair on our relative. If they had a recognised physical illness and needed equipment to be cared for at home, you would be shown how to use the equipment or maybe how to give injections if needed.