Hello -new to site. Caring for son with schizophrenia & Aspe

I am 58 and my son is 26 and now living in supported flat under a licence. I ve had 8 years of caring for him on my own and with the problem undiagnosed. I have paid for flat after flat and thousands of pounds of damaged goods and cars . I have suffered physical and emotional abuse. I am worn out . Eventually my son was sectioned and stayed at hospital for five months. He started supported living and convinced a locum GP to lower the dose of his olanzipine. He is now on his final warning before they say he can’t live in his bedsit. I am so worried about what will happen. I have no money anymore as I can just about work but I can’t afford hotels and flats for my son any more. And to what end? He only smashes them up and I pay for them. My son doesn’t think there’s anything wrong with him. He thinks the root of all his problems is me and I should provide for him.I really have tried my hardest to be a good mother. I spoiled him - as I was a single parent in a professional job, I was able to . He was the centre of my world and I felt guilty as I was single and he didn’t have a father around. So I over-compensated. I do his washing,shopping, cleaning . I do everything to try and make this supported living work but the evil disease has raised its head and I cannot beat it. I am, believe it or not, an intelligent woman and I perservee . But this disease has brought me to my knees. I am glad I am not suffering alone and I am grateful to write this and let the world know my feelings. Apparently, the Carers or me cannot make my son take the extra 5mg that kept him relatively ok, because it’s between the dr and the patient. I feel it’s all so unfair and I wonder if I am probably going mad myself. That’s the truth and I expect someone to say that’s politically incorrect. But I am long past caring now. Sorry.

Hi Alison,
welcome to the forum.

I don’t have experience of caring for someone with mental health issues, though others on here do. The combination of Aspie and schizophrenia, makes it even more complicated to treat.

Although his dose is between him and the GP, many carers on here, get round the patient confidentiality issue by writing to the GP or making an appointment to speak to them. The GP can’t divulge info without the patient’s consent, but they can read/listen. Write down factually how he functioned on the higher dose and then write down all the issues since he’s on the lower dose. List the risks - losing his home, damage to property, in trouble with the police etc etc and finish the letter by stating it is up to the GP - but you won’t be able to pick up the pieces - it’s on his conscience.

Once this letter is written and sent/delivered then it is time to withdraw. Others on here with relatives with mental health issues often talk about not enabling their carees to continue as they are - and doing all you do for him (although kindly meant), enables him to stay as he is and not take responsibility for his own life style. It also means you are exhausted and broke. This wont be easy to do, so I strongly suggest you get counselling to support you and help you to realise that its ok to put yourself first, for once.

Melly1

Thank you so much for your reply. I have been too tired to do the letter but tomorrow I have a day off work and I will set about writing it and taking it to his surgery. I did cleaning etc today and the flat was in a filthy state. I go through the rubbish and found a ripped up letter from his accommodation, warning him about how if he behaves the way he does again to neighbours , then they will ask him to leave… I know his illness makes him behave like this but there is an intelligence there that allows him to manipulate me. He expects me to find somewhere else for him to live. You are right I have been ‘enabling’ him for years. I called it ‘shielding’ him. BUt I truly cannot do it any more. After being with him this morning, I am so shattered that I cannot move off the sofa So cannot work today again. Thank you so much for your reply.

I have written rough draft of letter and taken your advice on what to say. I feel happier now. I can do no more butt least I know I’ve done all I can and that the Drs will be aware of the situation. Thank you

Well done for getting the letter done. You are right, you have now done all you can.

It’s time to put yourself and let others take responsibility; your son, his GP and those who are meant to be supporting him.

Melly1

Hi, your situation sounds very much like mine but I am yet to have the battle when my son comes out of being sectioned. I am 55 and my son is 31 and he has always had issues but I did not realise until 2 years ago they could be due to mental health. He was referred to Autism spectrum team and had the initial assessments but we have now been on the waiting list for the next stage since February.

Long story short his mood swings escalated and he was being treated for possible BiPolar when he got very violent and was arrested then sectioned a week ago. Since then it has been a nightmare with him being an hour away and then transferred to a PICU ward 2 hours away. We were not told and the bags of clothes and “home comforts” went “missing” so I have had to constantly ask both hospitals to sort it out. My son does not understand why he is in hospital, is very angry, and constantly texts me to tell me how unhappy he is and how he is going to kill himself or attack someone. I also get the blame, but I am used to that so try not to let it get to me.

He had his first review today and the doctor more or less said he had improved and could be moved to an acute ward then possibly discharged in a few days. How the hell he things my son has improved is beyond me. My son hates taking medication - he had a very bad experience with morphine - and the doctor did not even listen when I explained about his multiple personalities and probable autism. He just said to my son are you likely to be violent if you went home and my son said no! I went into panic mode and said I could not take anymore as I have my own mental health issues. He asked me if I was saying I was not willing to have my son home - how could I answer that in front of my son? My husband and I came away feeling more upset and lost, especially as my son accused us of betraying him.

I too have unintentionally enabled my son and I am adament that I want to be his mum not his carer. He had his bowel removed 5 years ago and has a stoma bag, which is adding to his distress as he has to ask permission to get a bag and then take it to the staff to be disposed of. He finds this humiliating and I understand that. I have asked for a carer’s assessment but been told there is a long waiting list. Tomorrow I am going to see my GP and ask to be referred to my doctor’s mental health team. I am so angry that they just assume I will take care of him that is driving me on to fight for some help. I have contacted my local family carer’s but will now pursue this and also speak to my works counselling advice team. I nearly broke today but realise that I have to reach out for help and you need to do the same. Put yourself first for a change - we deserve a life and to be happy.