Friends, Family & Carers Forum

[Skylark]

Hi,<br><br>My eldest son who is 19 recently spent a month in hospital after experiencing first episode psychosis. He also has aspergers which was never formally diagnosed but was confirmed by his treating psychs. The story of how he went to hospital is one for another day but it did help him. Mostly he doesn't think so and I can understand that. His psychosis wasn't drug related. Anyway he seemed very down today and this evening I asked him what was wrong and he said he didn't want to talk about it. I made some dumb jokes and encouraged him to talk to me. Thankfully he did. He said he didn't feel right like he was too light in his own body - like he wasn't grounded. He then told me he hadn't been taking his meds for 5 days. That means he stopped taking them the day his nurse came to visit. I had an inkling that the visit had made him feel crappy because his medication was discussed among many other things. Anyway he was afraid that the medicine would alter his brain forever or ruin it. But he said he didn't feel normal and he thought it was because he's been taking this medicine plus everything he's been given in hospital too. In hospital he was involuntary but on discharge he was voluntary. He was originally coming home on monthly injections as involuntary but that changed because the injection affected negatively and he asked for a certain other medicine instead and he seemed to have gained some insight. I was happy for him that he was able to responsible for his own health but also wary that he may not take medicine once he was feeling well because he would believe that he didn't need it. So he had been much much better and the visit seemed to help him decide he didn't need the meds anymore. He's only been home for around five weeks the injection would be wearing off now and he hadn't been taking his pill which is 2.5mg of an antipsychotic medication. Even though he's told me many times it helps him to think more clearly. I know he's not taken it a few times here and there but then decided to take it again. This time was the longest though. We talked and I promised him he would feel better if he took it. I managed to convince him and he took it. Thankfully he felt much better after a little while and said to me a few times mum thanks for helping me. I love this child so much. My question to everyone is how do I help him to realize or understand that the meds are helping and aren't meant to be damaging. He knows they help him he's told me himself but why does he change his mind. I don't want him to become unwell or have to go to hospital again. I don't police his medication but I do encourage him to stick with it - his Drs told me the outlook for him is very good especially if he follows the plan. I was told there would be all kinds of support and there is but it's a lot slower and less than I believed. He only sees the psych once a month and the nurse didn't turn up for 3 weeks so I rang to find out what was going on. I just want the best for him and at times I feel ill equipped to do what it takes. Thanks for listening. 😕

[Faith-and-Hope]

@Skylark

I am not familiar with this type of issue, but I wanted to say hi.  

That was a lot to get off your chest.  I hope you feel a bit better for writing about it, and I am sure someone will respond who is better able to answer the question.

Take care.

[Skylark]

@Faith-and-Hope

Hi and thanks for reading and replying. I do feel better for writing. I keep a journal but haven't had much time to open it lately as we just moved very recently. I had a counsellor I was seeing before we moved but haven't seen anyone here yet. I do have an appointment but I'm not sure it's going to work out as it's quite far from where we live and I have other younger children too. I find that going to counseling has helped me so much through the last few months. What my sons treating Drs told me on his discharge doesn't seem to match up with what's going on. As in the support services. I was told that my son would be able to get a job but that he would need a fair bit of support to do this. It's something that is very important to him. They also told me that he would need to do other things like be part of special social groups etc and that he was on a wait list for an early intervention program. When I ask the development nurse who comes around he doesn't really give concrete answers and he said it was good that we have the Internet as my son can start joining job seeking websites. So I'm confused. I was told one thing but the nurse is suing something different. I have written a list of questions to ask when he next comes. And I'll also follow up on a few things he said he'd do like bring some relevant info that my husband can read to deepen his understanding of the illness. I feel like I don't know anything at all. I do know my son though and I knew something wasn't right yesterday. This afternoon he told me he had that feeling of being too light in his own body again so he took his medicine which is great. I'm so scared sometimes that he will become unwell and that I'll have to be the one to make the phone call and then he will never trust me again. I know it's just a fear though and that I would do whatever I need to to keep him safe and well. Thanks again

[Faith-and-Hope]

Hi @Skylark

It's all very challenging, but it sounds like you are doing a great job of working through it as sensibly as you can.  

It is difficult too, juggling the needs of other children.  I can empathise with that part.  I had three children under 2 years old to start with - twins born after a single child - and one of the twins was born with Down Syndrome.  Along with that came heart issues, lung collapse, failure to thrive as a result, low immunity with ongoing respiratory illnesses, etc.  she had open heart surgery at 7 months, and had to be revived post surgery when she didn't "restart" when taken off heart-lung bypass.  Her twin had a heart murmur too, but outgrew hers.  Interestingly our 2nd son born a few years later also had a small hole in his heart, but in both those pregnancies I had issues in the 2nd month, which I have heard is when the heart of the baby is developing.

I hope this is not upsetting for you.  It's just a different life experience as a carer.  

We have five children all together.  My youngest is graduating high school this year.  

It's my husband who is struggling with a mental illness, but he is deep in denial and hostile at any mention of it.  Up until now he has appeared to be within normal boundaries to everyone else around us, including the family doctor, but this is starting to spill over.  We are in limbo, knowing that something is going to come unstuck, but we can't predict what, when, where, or how.  Meantime his behaviour is going completely out of whack at times, but if we walk on eggshells around him, generally he just gets on with his daily regimen, and we focus on our commitments in an uneasy holding pattern.

it can be so confusing and exhausting trying to work things out, and make everything work to the best of your manageability, but you and I, and many others, will get there ...  Just keep swimming !!! 🐠🐠🐠

Meantime I think it helps to know that you are not alone.  This forum is full of beautiful people, some of whom can relate personally to your son's illness and are generous enough to share advice and understanding from their side of the fence.

All the best.  Make sure you make time for yourself and don't overlook your own needs (there is advice about that on the forums too).  Ask questions, and chat when you feel like it.  There is generally someone around to respond 😊

[Skylark]

Hi @Faith-and-Hope<br><br>We have five children too with the last three all born in consecutive years. We have three sons who are on the spectrum but we've always just focused on them as the unique individuals that they are. One of our sons was also born prematurely and suffered from respiratory distress syndrome so we were in hospital with him for 2 weeks. <br>You have been through so much and still are. I admire your ability to stay positive and keep moving forward.<br><br>My son, like your husband was in denial and strongly opposed to the idea that he was unwell. Sometimes he swings back and forth between having some insight and denying. He has said to me that he did have psychosis but doesn't like to admit it because it sounds too crazy. When he's not been taking his meds he says he was just being a brat or that he had a tantrum. I say to him calmly that it was more than that but I don't push it. Walking on eggshells is very hard for everyone. We were doing it for awhile until things really became unstuck. My son would not even see a counsellor before and was very anxious about me<br>Telling anyone his secrets as he used to call them. I think it's hard for him to accept that he's been unwell because it somehow makes him feel that he's inferior. He's so worried that I will tell his team that he's not been taking his meds sometimes. <br><br>I really hope that your situation improves. I wasn't sure what was going on with my son but the day he told me seriously that he was going to the police so they would know who to blame if anything happened to him and we wouldn't get away with it was like the biggest lightbulb turning on for me. I could see his fear was real and even though he picked up a weapon I could see that in his mind it was for self protection. The two weeks preceding that there were other incidences including one where he hit me a few times while screaming at me to apologize for a life time of abuse 😞 this abuse included getting him braces which he saw definitively as abuse. Before I knew what was going on illness wise I didn't know if it was something to do with aspergers or what. A couple of times I felt angry but mostly I could see this beautiful person I love struggling yet refusing any kind of help. From the age of 14 you could not even mention going to see a counsellor. <br><br>I'm so glad that he is so much better now and his outlook is good. I just want him to have all the support I was assured he would have.<br><br>I hope that your family's situation improves soon and I feel for you very much. It's such a hard thing for everybody and sometimes feels like it's all too much. Sending you strength and positivity &lt;3

[Faith-and-Hope]

Thanks @Skylark

It was awful for you, but just hearing how you managed is helpful to me, and I am so glad it's out in the open medically now.

We are holding onto the hope and expectation that the majority of the behavioural side of hubby's condition is the result of not supplying the brain with enough food-sourced energy - which sounds incredible when you see how much he actually eats of highly nutritious food.  It's only when you realise how obsessively and intensely he is working out, and that some of this highly nutritious food is not.very energy dense despite it being a large portion, and then food with laxative properties all in the mix, that you can start to see how it is possible his brain is being under-supplied with energy.

some of that sounds a bit like code, but you will find that some specific words are not permitted on the forum, and the moderation team will hold your post back for editing until you find another way to say what you want to say, sometimes sounding a bit evasive about it in the process.  It's all to the good.  Some particular words can be triggers for other peopl's challenging circumstances.

I strongly suspect we have OCD issues in there underlying as well, but I don't know enough about it to understand whether that is something that requires intervention when the dust settles - perhaps "just" CBT (cognitive behaviour therapy) - but that is something to focus on in the future, not in this moment.  Still, I hope that is all it is, because we have been living with these OCD type behaviours in a much milder form for a long time, just accepting them as part of the dynamic of his amazing, loving, quirky, individuality, that was hidden behind things as socially acceptable as workaholism, strong physical exercise focus, admiration for a sleek body form, awareness of personal security, etc.  There is no way we anticipated it could all blow out into something as controlling, rigid and invasive as this 😥

It has been so hard watching someone we looked up to and admired declining in their awareness, behaviour, and ability to remain connected emotionally to others, as well as good intent becoming a defence used against us.  All without his awareness or approachability.

i have to trust that he will land softly when it comes unstuck, and that we can hold it together until then.  I am concerned about my youngest though, and will try to make a doctor's appointment for her today.  She has pupil free days during an upcoming exam time, but I don't think she is going to be able to reach them without some sort of intervention.  I think it's the strain showing up in his current absence, but she is just not picking up her bundle again 😕

I'll let you know how we get on.

Looking for a rainbow ....

[Skylark]

Will be thinking of you and trust that all goes well. Your rainbow is coming to find you I just know it ❤️ hugs

[Faith-and-Hope]

Thanks @Skylark

@Just back from the doctor. I think that went well.  He will be speaking with the school counsellor and we wil get something sorted to keep it all on the rails.

🐠🐠🐠  Just keep swimming ...

[Faith-and-Hope]

Hi @Skylark

Today was a much better day for my daughter.  She ended up at school yesterday afternoon, and worked through a plan with the school counsellor to get everything back up onto the rails again.

Now that the school counsellor has spoken with the doctor, they have established a link that they can work with a bit independently of me, and keep school issues from flooding back into home, and hopefully visa-versa too.

I am feeling exhausted, but I imagine it is emotional exhaustion.  I have been carrying that responsibility for too long, when in fact it belonged in the order it is in now.  That's a load off.

🌸

[Mish]

Thanks for sharing your story. I can relate to it in some part - my father. I too, am very scared he will not be taking his meds for psychosis when he leaves hospital. I am also scared that we will have to make the call again, and that he will never trust any of us. Did your son remember the episode that led him to be hospitalised? I have been told that they sometimes forget. I am not sure what to expect, with my dad. I am afraid i do not have any advice for you, I am so sorry, but i have taken great comfort in knowing that there are others with similar fears and experiences. It has been comforting to hear many psychiatrists say that the medication does work, and the research supports that. i hope your son continues on the road to recovery. Stay strong.