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Casual Contributor

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. Smiley Happy I am hoping that 2019 will be better.

12 REPLIES 12

Re: Roller coaster 2018

@gudnytgirl

 

Looking after someone 24/7 is unsustainable. 

 

At this point you may not feel brave enough or strong enough

BUT if someone else is receiving the carer payment, I would be ensuring they remain fully involved in your partner's care even when well.  It is not rocking the boat, it is working in partnership with them and this can be done in a kind manner.

 

Perhaps the social worker might be happy to help and contact them and have a meeting to let them know as his official carer they need to help in his continued management, perhaps setting up a routine where they visit your partner at least once or twice a week, perhaps taking him out for a day so that you can have time to do your own thing. Arrangements for his care to enable you to have at least one weekend off a month and a week or two once or twice a year to enable you to visit your family could also be negotiated.

 

Living with someond with MI is not easy and having some support in place for yourself makes a huge difference. There are carer supports out there to help partners, family and carers of those with MI.  If you let me know what state you are in I can send links.

 

Seeing a counselor to help us with our own emotions is also beneficial. 

Re: Roller coaster 2018

Thanks for the inputs @Darcy. I will be discussing how to go about it with the social worker. I tried to involve the others as much as I can. I told myself to let them know how everything is doing even if they are not asking for any info. I did realize that caring for someone alone is very hard. I messaged the primary carer/family member that I will be away next month but I didn't hear anything from her. I'm from NSW.

Re: Roller coaster 2018

@gudnytgirl

When you messaged the carer, did you ask them to make arrangements for care in your absence? 

 

*edited to better reflect my thoughts

They may not be expecting this and not know how to respond or could be away.

Re: Roller coaster 2018

Sorry @gudnytgirl, that sounded a bit harsh.  Enlisting the help of the social worker will probably help, often having someone in a more official capacity holding them to some sort of accountability is helpful.  They can also outline what requirements are needed - it takes the load off you, which can make a huge difference.

Re: Roller coaster 2018

No I didn't mention that I expect they would look after him but I don't want them to be caught off guard in case I eventually take off for a break. Yes, the social worker's presence is helpful especially that my partner is independent (e.g. he can do things on his own, sometimes stubborn) but he needs someone to be with him. I also want to have an assurance that proper arrangement is made - not that I dont trust the primary carer but they also have a family to look after. Basically, I dont him to be left alone in the house.

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Re: Roller coaster 2018

How are things going @gudnytgirl?

Re: Roller coaster 2018

Same things, pretty tied up looking after my partner. There are better days (trying to br positive here) but I wish everyday gets better. Thanks for asking. I made a hard decision to postpone my travel. I feel bad about it. 

 

For some reason I am scared to leave him alone given that his sister is has gove to her first  chemo session and no one seems to keen to be with him. I felt it is all bad timing.

 

I feel bad that I disappointed my mum and my family. I feel bad that my partner thinks that my family doesn't understand his situation. I even shouted at him that they are the most understanding bunch since they let me stay here when I c po uld have a better life there.

I dunno but my life is full of disappointments.

Only our dogs make me feel better. I'm ranting, sorry.

Re: Roller coaster 2018

Do you know why you are scared to leave him on his own @gudnytgirl? I was scared to leave my Mr Darcy on his own as he had attempted.   I have not had need to go away on my own as yet but would probably find it would take courage but I am in a place where I could now do it. 

Re: Roller coaster 2018

I'm scared because he might hurt someone. He has a delusion that cars that will pull over in front of our house are for him. It happened once that he approached the guy and opened the passengers door and shouted at the guy. If I wasn't there, he could have punched the guy. That's was the time he was so stressed out. 

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