Roller coaster 2018

Hi everyone. I'm a 41 yo primary carer looking after my partner for 3 years. He was diagnosed with schizophrenia in the late 90s but for the last 3 years, it manifested severely that he had been in and out of the hospital in the first 2.5 years. The last 5 months were better, he was released from hospital and was under community treatment order. It was a rough start but it eventually improved and the mental support team was there every step of the way. I tried to involve his family when interventions are made especially when the support team was just starting the daily visits/assessments. Everything seem to fall into place - no delusional paranoia, he was taking his oral meds - I never felt so "normal" living our lives. It was a relief, TBH, that I started to plan visiting my own family overseas. Then, something triggered and my partner is back to square 2 ( not one as he is still ok compared to when it all started).

With everything negative happening this past week, I had a retrospect of all the issues or things I have to deal with while caring for him.

1. I avoid responding to him when he is delusional. It is just too much sometimes that I have outbursts and i end up raising my voice. I know I am not that person but my anger and disappointment are so pent up I cant stop from screaming at him. I know it doesn't help so sometimes I will hide somewhere just to "keep the peace."

2. I mentioned a feeling of resentment in one of the posts here and I am afraid that is what I feel right now if I can't go and see my family. That is just the tip of the iceberg since I know I feel this because I gave up everything just to look after him 24/7. I want to find a better paying job here ( I'm working online with a crappy salary), enjoy life and travel with him - they are all wishful thinking. I can't admit that to my family and my best friend because it means I made the wrong decision of moving here with him. I told my partner about that during one of my outbursts but I don't think he understood.

3. I feel guilty every time he is admitted to the hospital and I told the support team about that - he blames me when he is admitted and his mom would ask me "why is he in the hospital?" I feel that I can't look after him when he is taken there. Well, that is the truth especially when I feel overwhelmed and no one out there in the family to help me.

4. Speaking of helping me, his family is just one call away. But He distances himself from them when everything is well. This is also true from their end. Their presence is felt more when he starts calling them when everything is unwell. For the last few days I've been writing a journal that I will forward to his legal carer (yes, I'm not the legal one in terms of getting allowance support) so she knows how hard it is lately. I want them to be involve because they don't see the severity of his condition.

5. Money matters - my partner is under DSP so that is basically the household income. What I earn online is just enough to pay my Bills back home and something to spend for myself here. The support team raised that issue with us - money is a touchy matter. They said that at least, the payment or allowance goes to us since we are worse off than his family member who receives the payment. I never thought about the carers fee until our social worker asked me if I get paid being a full term carer. I said I don't get anything from all this and mentioned it was unfair. Yes it is but I don't want to rock the boat. If the family thinks I deserve it, they should have done it before. I don't want to initiate it since this might cause a rift between his family and me.

6. Respite care - I just want to have a break. I am only asking for a couple of days off but with the rate it's going, it is a mission. The support team is there is help but who would look after him? Someone needs to be with him most of the time especially when he has his bad episode that he can actually hurt someone. My mind is dead set on the visit but he makes this statement that he can't be alone. He makes me feel guilty if I leave him and let him cope alone. But for how long? I postponed my visit 3x for the last two years. He is lucky my family understands but not this time- my mom's excited to see me because at last I gave her a definite answer when I will come and visit her.

My partner now is like a vampire that sucks almost all positive things in your life, to put it bluntly. I only see a glimpse of that old person once in a blue moon.

I know this post is long. I have to let it out before the year ends. 🙂 I am hoping that 2019 will be better.