“The voices that he hears are processed in the same part of the brain that processes the sounds you hear” said the man from the Schizophrenia Fellowship to me on the phone. “They are as real to him as my voice is to you”.
I knew this already but somehow hearing it from this kind man makes me remember it, resets my empathy. Again.
It was like when I saw the movie A Beautiful Mind. When I first saw how schizophrenia looks from the view of the person suffering the illness. How very real it is. The movie portrayal of a sick man helped me to understand the sickness.
Except the truth is I will never understand just how frightening it is.
I will deal with it though, on an almost daily basis. I will see someone I care for and love suffer under the weight of a brain so disrupted that every day is filled with hallucinations and delusions that make his life not just chaotic and hard to understand for the people around him, but which make his own life a living nightmare.
I will speak to doctors, carers and mental health professionals to try and get help for him. Sometimes I will feel like it’s me who’s having the hallucinations, I hear the words “very much in demand”, “underfunded”, “closed down” and “we will get back to you” a lot.
I will see people talk about mental illness like depression and anxiety, illnesses from which I myself have suffered and I will still feel sick in the stomach for my brother-in-law who lives with people in his mind telling him that he is not good enough. People mocking and taunting him, jeering at him and frightening him and I will always think his is the worst illness in the world.
The words in his head are never kind. They are never comforting or placating. They are not his friends. He has no friends.
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Two or three times a week I will pick him up from outside his home ( even though I am one of the closest people to him he will never let me inside). I will take him shopping, for coffee, for lunch, to the doctor. I will get irritated by his reluctance to do anything without me at his side – to leave his apartment or even go downstairs for air. But then I remember that’s his disease, not him. I remember that the voices and delusions he hears and feels are not made up. They are as real to him as reading these words are for you.
He would love to lead a normal life, he yearns to be free of the yoke of his disease but that disease will have him inside his four walls smoking endless cigarettes that leave angry, orange marks on his fingers. Leave him feeling alone and scared to venture out.
Every day is the same, spent in a haze of medication induced exhaustion. Waiting for nothing.
It’s hard to believe that it is me who is so angry that there is nothing we can do to get proper and sustained help for him. Hard to believe that it’s not he who is angry – but he’s just given up. He’s just sad and scared.
This week is Schizophrenia Awareness Week, an annual event held in May to provide an opportunity to raise community awareness of schizophrenia and mental illness in general.
I am reminded of it every day.
I just wish there was more I could do about it.
By caring for him you are doing amazing things for him. Most people would run the opposite way. You haven’t that makes you precious to him.
Thank you Patrick
Awareness raising, plus the wonderful companionship you show your brother-in-law, is so wonderful. I don’t know what I would do in this situation – is there anything else that individuals can do? (I’m not sure). We all need to get behind you and support better resources as well – they do help, don’t they? (it is a mental health area I am so ignorant about, sorry).
So hard to know what to do Helen, even when you are in the thick of it
Thanks so much for helping to raise awareness with your beautiful words and your gorgeous caring actions….xxx
Thank YOU for letting me know about “Don’t be left in the dark” xx
By coincidence I just finished only half an hour ago the schizophrenia chapter in Andrew Solomon’s brilliant book, Far from The Tree. Solomon pretty much comes to the same conclusion as you (and me) that of all the illnesses that can affect our loved ones, schizophrenia is the one for which it’s almost impossible to discern any hope or meaning (and his comparisons include Down’s, autism and severe disability). So yes, the worst illness in the world.
However, I have to agree with other comments that your brother-in-law is blessed to have you in his life. No matter how thankless the task may seem sometimes, never underestimate how important it is. xxx
You are so very kind Benison, thank you xx
I just think you are another level of amazing for being their for your brother-in-law. I have two brothers with schizophrenia. One was diagnosed when I was 9 years old so I have grown up with constant hospital visits, moments of violence, sadness, and some good periods of semi-stability. One brother sound much your your brother-in-law.
In Tasmania where we grew up they did have good services in the 90’s. Ss he could not have a functional life living alone or with family( several years of terrible illness, instability, violence, fear) we got him into a wonderful facility. Much like a uni dorm where everyone has their own room but there is someone to provide food, nurses to give out medication, lots of fun activities. he even had a “job” he caught the bus into town and did work for Red Cross( not such much work as chain smoking but it made him feel good). he lived there for two decades. Two wonderful decades or relative stability. He would come and stay on weekends at home someontimes and we would visit frequently.
The th close it down to fund “community services” where people live alone in horrible housing commission shacks in block with drug addicts and other dysfunctional people. My brother did not cope at all. he lived in filth and squalor, stopped taking his medication or over-dosed on it. He had constant reamissions, alienated all his friends because he became paranoid and violent. His addiction to cigarettes over-took his life. once he ran out of money he spend all day going about picking up Stubbs. He a chair through a neighbours window as he wouldn’t give him extra cigarettes.
he kept hocking his phone to buy more.
5 years on he becomes an unwashed, paranoid chain smoking she’ll who could not keep up a conversation. he was never home when his case worker came and consequently they left him to his own devices with his medication and he accidentally over-dosed, have a major seizure and was left lying on his floor for a week. He was found in a coma and was in the ICU for some time.
All this lead to him FINALLY being allowed to live in an assisted living home again. It is about 20 people over 40 with mental illness who have their meals provided, some prompting to wash and clean and their money /cigarettes dished out each day.
My brother has been living like this again for 6 months now and he is a different person. He is HAPPY. He has FRIENDS., he is clean, I can contact him, he has not been violent, he smokes less, and I am not frightened of him anymore,
I live in another state. he does not have very good family support in Tasmania so I visit every 3 months which is hard with two young kids but I think it is important. I take them sometimes as ai think seeing mental illness as a child was very good for me, it taught me empathy and opened my eyes to another reality.
I did look at moving him to NSW but there is no support here at all really. It would be me. family do not make the best carers of paranoid people as one tends to be the target of ther delusions and I have had many frightening experiences with both my brothers.
I don’t have a relationship with my other brother at all- He thinks I stole a book he wrote and became a millionaire( delusions) so he will not speak to me.
I wish your brother has the chance my brother has now. Good assisted living makes such a differnce to people’s lives. My brother yesterday was telling me he is never moving again. I really hope this is true.
Oh Amandarose. My heart.
THANK YOU for sharing your story. Thank you thank you thank you xxx
I can’t help but feel out government owes our mentally ill a duty of care to provide adequate support. I often wonder if a human rights lawyer can sue them to create change.
It is just not right. In Tasmania they only have 20 beds in that kind of supported housing and I am so sure more people must need it.
In NSW they claim mentally ill people don’t qualify and support is only for mental disabilities which is ridiculous. I see people though work with mental illness and unless you have private cover in NSW it is appauling.
My other brother does ok in the community in Tasmania because he has the sense to rock up to get medication via injection every two weeks but not everyone can manage alone at home. it is better there then here.
I can tell you right now, that what you are doing, is making a huge difference in your loved one’s life. Just doing that, being there, accepting him, getting him out and about, no matter what – I dream of that. That kind of selfless, genuine love and support can be the difference between life and death. You are one in a million Lana. X
I am the mother of this young man and Lana is my daughter in law. I am overwhelmed by Lana’s involvement and want to acknowledge you Lana, for your kindness, caring and commitment. Forever grateful,,,