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How Schizophrenia Affects my Son (and those around him) - Carers UK Forum

How Schizophrenia Affects my Son (and those around him)

For issues specific to caring for someone with mental ill health.
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I have started this post, as I wanted to tell how my son's illness affects him - and me.
Thanks to those who posted such warm messages to me in answer to a post on another board.
My son had his first 'episode' when taking his final exams at Uni. Uncharacteristically he 'lost it' and hit one of his friends, then just ran. Luckily he had good friends who managed to get him to hospital and then the nightmare began.
He was in there for many months, but we didn't get a diagnosis until a couple of years later. Paranoid Schizophrenia.
During the intervening years, he has been in and out of hospital for varying lengths of time. ..seen many consultants, had many different types of medecine plus ECT. He is, at the moment also having Behavious Cognitive Therapy. All great words, but make no difference.
The thing is - even the 'professionals' know nothing about why it happens and the treatment is hit and miss. There is one thing that they are all in agreement over - they ALL know best!
What they don't seem to understand is that usually, 'Mother knows best'.
His general problem is that he needs to die, to save the World. He thinks that the World is going to end; through nuclear war, or some tradgedy. This is not a young man who is uneducated - he has been through Uni and managed a degree.
It's not getting any better - in fact it's worse.
We all get fed up with hearing people hoot their car horns when travelling along a road? We know that it's either road rage, or someone they know walking along the path? But to my son, that person is telling him to get on and kill himself. Even trains whistles have the same effect on him. The TV also tells him that, through some of the adverts. Have you ever noticed how many have the saying 'go on, do it!' in their advertisements?
I can go and relax in the country if I need to - as he says, there is no peace for him. Voices in his head call him dirty names and keep telling him to 'go on, do it'.
The press stereotype the person with schizophrenia - they are aggressive persons to be wary of.
Not my son - he wouldn't hurt a fly. Literally. He loves all wildlife and will rescue the smallest bug from drowning in our pond. Everyone who meets him , which is few people these days, as he keeps away from public places, says what a lovely young man he is.
Medication is a nightmare, as nothing seems to work. The one that did do more than others was stopped as it was bringing his white blood cells down too low.
So we struggle from day to day. Sometimes his old sense of humour comes back fleetingly. He has a very dry sense of humour and can have me me rolled up with just a word and a look.
At the moment he is spending a lot of time at his flat - even so, he imagines that the neighbour downstairs is telling him that he has to get on and end his life. (my son's, not his, by the way Image ) Officially, he is in a local Mental Health Rehab Unit, with trained Staff there. I must say that I can't speak more highly of them - his welfare has always been their main concern and even now, they phone him regularly to see how he is and make sure that he has his tablets, which have to be collected every couple of days.
It's just the consultants who I have the problem with. They see him for a few minutes, and go by what is written on his record sheet.
Having said all this, when we spend time out on a walk with the dogs', it's wonderful. We both take our cameras and wander through the countryside seeing what bugs' we can find to photograph. (Not many when little Bryn races through the grass!) For that moment in time, we're just like any other Mother and Son.
By the way, he's now 28. He wants to be able to keep a job. That's if anyone would employ him anyway. He feels guilty about living on benefit.
He's a talented, sensitive young man - I just wish that he would believe it.
Thank you for that profile of your loving son. He sounds a wonderful man and I feel heartbroken for him suffering the voices. I have never had that problem myself but worked in a large (1,000 patients) psychiatric hospital and encountered many folk every day who did suffer with the voices, some going out into the community and others never being able to deal with the stress in the outside world.

I can never understand why psychiatrists seem reluctant to listen to family input, thinking their pills, potions and ECT are the way to go. Perhaps if they were willing to open their own minds and listen to you it may help them to help your son.

During one difficult encounter some years ago when my mum was ill and the hospital didn`t know what was wrong with her our GP told dad although the blood tests weren`t confirming it she more than likely had an overactive thyroid. By this time mum was less than six stone and unable to get out of bed. Dad asked her consultant to consider the medication for thyroid and he said "If we give that to your wife on the whim of a GP and he is wrong which is quite likely as the blood does not show abnormal thyroid levels it would kill her." Dad had already been told by the junior doctor mum was on borrowed time and he went to an office and borrowed a pad and pen, writing to the Consultant and quoting his conversation ending with........"Sir, with the greatest respect if my wife is dying anyway so giving her the medication will do her no harm. She has a young daughter who needs her(me) at home and I implore you to heed what I say. If the treatment doesn`t work and she dies, at least you will know you have done your best. Letter was duly handed over to the Consultant and dad left. When we went back to visit at night the sister told us mum was starting on new medication the following day and if it worked she would be on it for life. Mum rallied and after eight years was on such a low dose of medication she was allowed to come off it and was fine, until dementia got a hold of her many years later...........but that`s a different story.

In my clinical dealings with my OH`s urologist I have had nothing but kind consideration shown to me, both by Mr D and his team. He will answer any question if not there and then on the phone when he has thought about it. He has been 100% honest with me throughout as I asked him to be as I needed to know worst case scenario before each operation so I could cope with the aftercare.

It may be worth a try writing a letter from your heart to your son`s Consultant. At least it will be on file so whoever he sees next will have an outline of your concerns.

Good luck

Take care
Meg
Hi Caring Mind

That was a very poignant and touching portrayal of a remarkable young man by a mother who obviously adores him.
What really came accross was the closeness you have with your son and the great times you spend together. I'm sure that makes such a difference to your son's ability to endure the horrible symptoms he has, to know that you are always there.

Wendy
Hi Pamela

I have posted a reply on your other post, but I think what Wendy has said is completely spot on.

Take care
Blue xx
You really are a caring mother to this wonderful son you have. and I hold my hat up to you for doing such a wonderful job. I to have a son that suffers with schizophrenia and I recognise many things you have said about your son with mine. Im sure the things that he says to you are not meant but deep down he truly loves you and I am sure he does appreciate what you do for him. I understand how frustrating and isolated it can be at times sometimes I have felt that I wanted all this to go away and for my son to "normal". all I want is for my son to have a happy life and do the things that other people do. and I know that this is what he wants as well, but with all the difficulties he has he magages to cope in the best way he can. He knows I will be there for him and im sure your son knows that too. All I can do is give him all the love and support I can. He has come a long way since being first diagnosed with this illness but it has been a long hard road to come this far. So please dont get disspondent you are really doing a great job and you should be proud of yourself. Take care ((((Hugs)))))
your a mum, and u love your baby. It must be heart breaking for you and i cant imagine wot u go through
He sounds the son to be proud of, clever, funny and kind.

hang on to the good moments, if he isnt allowed in the house cant u and him meet for a walk?
Hi,

I joined up about a month ago but I haven't really posted until now. I've just been reading through everyone's post and this one really made an impression on me. It's such a loving story, which highlights the difficulties of living with mental illness, but also the wonderful people who live and deal with it every day. My husband Andrew has bipolar, but was initially diagnosed with schizophrenia. He was off and on all sorts of meds to begin with, and then was finally diagnosed with bipolar.

He had what everyone kept calling a "psychotic episode" quite a few years back, which is when I actually found out he had bipolar. At first he was just a bit overly paranoid, then it got worse and worse until he thought the police were after him and then one day he wouldn't talk in the living room and I finally got him to tell me it's because he thought people were listening through the TV. I phoned his Mum in a state, and finally found out the whole story.

So I don't know what it's like to live with schizophrenia, but I know what it's like to love and care for someone who is paranoid and wants to harm themselves and I think you are doing an amazing you and you are a real inspiration to me. It's so hard to know how wonderful they are, but know they don't feel the same.

Andrew is ashamed to have a mental illness, but I try to show him that he has his own personality, and that he is kind, and funny and can't be defined by an illness. I just wish he'd listen every now and then Image

x
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