Hi, I apologise for the long post but I want to get everything down to give a clear picture of what has happened.
I have been trying to get my son mental health treatment for years - he is 31 - and he has been on the waiting list for autism tests for 18 months. He has had the initial assessments so we are now waiting for him to see psychiatrist. His mood swings were getting worse so eventually we were referred to the IDT and put on a waiting list. Anyway he had a massive meltdown and I had to leave the house for my own safety. He then got assessed by IDT and they tried to help him in the community.
My son totally distrusts doctors and medication following a really bad experience 5 years ago when his bowel ended up having to be removed. His beloved Grandma then died suddenly 3 years ago of liver cancer. He started to have different personalities - he said as a coping mechanism - which eventually “took over” his own. I have not been given a diagnosis but they believe he has bipolar and other issues.
Anyway, on Tuesday he smashed my neighbours door in and went into another neighbour’s house with a hammer, then smashed up the kitchen and his car windows. I was asleep and had no idea until my neighbour rang and I immediately called the police. They found him after a search and he was arrested and held in a cell for 10 hours before being sectioned. I spoke to him whilst he was in the cell and he was vile to me, as he always is when having an episode, and blames me entirely.
I went to see him Weds but he was in a 121 and I could hear him slowly getting angry and then shouting and banging before the panic button was pressed. I was terrified and ashamed to say I hid in case he saw me and went for me. The hospital is an hour away and I have knee problems so by the time I got home I was in agony and decided it was too dangerous for me to drive that far so would have to go at the weekend with my husband.
I then received a phone call last night saying he had been transferred to another hospital onto a PICU ward. This hospital is 2 hours away as a bed was not available on the unit 20 mins away. So basically it is too far to go and see him and I am reallly struggling with my feelings. I am scared to talk to him on the phone, even if I am allowed to, in case he shouts at me and am feeling really guilty and ashamed of myself.
When I talk to his coordinator she says hopefully it will not be long until he comes home and I panic as I do not want them to assume I will just carry on caring for him. I have a FT job and had been working from home but am now off sick as I could not cope. I also have mental health issues and was signed off work for 3 months last year. My husband is very supportive but it is impacting on our time as Jay demands attention all the time. I know this will change when he gets better but the constant fear he will attack me will not. I requested a carer’s assessment 6 weeks ago but have just been informed it could be months before I receive one. I am really worried that they will send my son home before it is done as I have not had the chance to explain the impact caring has on me and I am not willing to do it. I am certain I will break if I am expected to.
I know I sound selfish and uncaring but I do love my son very much but trying to help him with no support for 13 years has taken it’s toll. Also, because he has now been violent I am worried for my safety and others around us. I have no idea of the process involved when someone is discharged so wondered if you could advise me whether they can just send him home or if I will get the chance to say I am not willing to care for him 24/7? I know it will not be for a while as he will not even accept he is ill and is very confused and angry. I am so sad that my lovely son has ended up like this but fully understand it is not “him” and his brain is ill causing him to have a completely different personality.
Hello Tricia and welcome to the forum.
Firstly I have to say that I have absolutely no experience of the problems you describe (my caring situation involved my Mum with Alzheimers) but there are others here who are better placed to give you advice from their own experience.
However two things I will say:
!)
I know I sound selfish and uncaring but I do love my son very much but trying to help him with no support for 13 years has taken it’s toll.
You do not sound “selfish and uncaring” - very much the opposite, but you have reached the end of your tether and are in danger of Carer meltdown yourself.
- No one can be forced to care for anyone else, no matter what the relationship (with, perhaps, the exception of very young children) so when you do get your Carer’s Assessment you need to make it very clear that you are not willing and, indeed, not able to continue caring for your son.
From what I have read from other members here, if your son has now been sectioned (especially after such violent episodes) I do not think that he will be released back into the community any time soon.
Thank you for your reply Susie. I have just managed to speak to him for the first time and he was so lovely to me and worried about how I was. He is very angry as he does not think he should be there amongst these “ill” people. He is also refusing medication and saying he has to wash his hands in toilet water so still confused. At least he was not angry towards me this time, although I know at other times he could be, and he said he loves me which I know he struggles to do.
I just want to be his mum, not his carer, as I think I will break otherwise and that is no good for any of us. It is all still raw at the moment but I am so glad I found this site where I can speak to people with similar experiences.
Hi Tricia,
what a frightening time you have all had. So sad that your son had to reach crisis point before he could be given the next stage of help. I’m glad you had a good phone call with him, important for him and you.
Like Susie, I don’t have direct experience of the mental health system, (my caree has autism,) but some of our friends have sons who are the spectrum (more severe end,) who have. It’s my understanding that following being sectioned, your son is entitled to section 117 after care in the community. Accepting this care will be a condition of him coming off section. All the young people we know who have been sectioned and released with section 117 funding have moved to supported living/ supported living plus or residential care, in places that have experience of step down care.
The MIND website gives information on this https://www.mind.org.uk/information-support/legal-rights/leaving-hospital/section-117-aftercare/#.XWmZQ-hKhEY
I think the challenge will be ensuring that the place also has genuine/proved experience and success at supporting people on the spectrum. Many people on the spectrum struggle to engage with mental health service as the services are just not geared to their needs.
Please don’t feel guilty, it is perfectly understandable and acceptable that you don’t want to be his carer, whilst continuing to be his Mum.
Melly1
Thanks Melly1 I have looked at the info and feel happier now.
My son rang again because the airwaves told him to. He said he has decided he can stay for a few more days as he is working under cover to help the ill people. He also said there is a carer’s course he has read about and I should go on it to get more confidence. Bless him he does worry about me. He had a word with his stepdad and my husband broke down as he loves my son like his own (we have been together 16 years). People do not always realise the strain it puts on families and my boss seems to think now he is in hospital everything is back to normal. I don’t think life will ever be normal again! Luckily my closest work colleague is fully aware as her daughter was sectioned several years ago and other colleagues have been very supportive.
I have three very close supportive siblings and three amazing friends who are there for me whenever I need them so I am lucky in that respect as I realise others may not have that.
I am seeing a wonderful Occupational Health person on 16th Sept and she will make sure work agree to give me the support I need. I also have a great GP and practise nurse so will look to get support from them. I do find it difficult to ask for help but have accepted that is silly and I need to reach out.
Tricia,
you sound more positive in your last post. I’m glad the info helped. There is a lot of info on the that website, worth exploring. Sounds like the course your son was referring to could be useful - I wonder if it is available online or in your area? I’m glad he is settling, even though at the moment he is still delusional.
Sounds like you have a great network of support, definitely use them all; if the tables were turned I’m sure you would help them.
We are here too in cyber space if you need us, plus your posts will help others in a simiiar situation.
Melly1