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Re: Lost Hope

I just want you to know that I have been where you are.  it is so difficult all the psychiatrists and psychologists can be hard to deal with and one even told me off the tablets weren't working so it was mine and my sons fault.  The psych said "you go walking every day why can't you take your son"  My reply was that is a very good Idea i just thought that in Australia it is illegal to taser your children, I'm sure you are familiar with the tantrum when a carer tries to add or change something.  I would challenge them to live with my son for a week.  They have no concept of the strain of living with a person with a mental illness.  I had to finally realise that my son can't be helped and I have a finite time on this earth and i have started to think about me.  I still drink too much to try and cope but I'm trying to put me first, carers have the right to quality of life, we save the government billions of dollars doing a thankless task,  My son can't even get disability from centrelink he survives with regular cash top ups from me on new start.  My husband and I realised that we just couldn't live with this kid any longer and i was in the fortunate position of receiving a large enough inheritance from my father to buy a unit which I rent to my son for the princely sum of 100 per week.  It helps to cover some of my costs like rates and upkeep,, but i am really paying for peace in my own home.  The ability to watch tv without random verbal abuse episodes.  The luxury of sleeping through the night without a random tantrum.  I wish you all the best and I think us carers are the most undervalued individuals on planet earth.  We can't even get respite, it sucks so badly doing a thankless job with no respite and no real understanding of how totally worn out we get.   I went with a girlfriend on holiday and left my husband in charge, that was a good break.  other things I do is don't answer my phone in the middle of the night or other times I just wish to be alone.  there is nothing that can't wait, anything important, people can leave a message.  We just need to find ways to look after ourselves because no one else will.

Re: Lost Hope

In this society it is all ways words and numbers , you are expected to follow and tell the people up front how great they are , The presser to conform and to follow .   They want you to be , what they expect you to be , What they want you to be , but never , You just You  . To stand back wake up and look at this society the presser, the must have certificates and the numbers they decide what you can do in this society in your life , The pressers and stress in trying to conform to all of this . Trying to live up to what is expected what ever that is and feeling failed ,can"t cope with all this .
 
Look around what is there ? presser to conform , never to speak up .
never understanding to feel, to see the weird , wacky the oddball and day after day of all that violence on TV

Needs a reason , a reason to try , an interest ,  a quality of life , to discover what his interest are , to four-fill his interest .  If not to late ..      

Re: Lost Hope

@potcrack

Developing hobbies and interests can help, yes ....

Re: Lost Hope

Hi @daisymae

I think your right in saying that many people do not full comprehend or understand how hard it is to care for someone with a mental health illness and what an enormous impact it can have on the functioning daily life of a carer.  Each one of us has a different story and set of circumstances which is unique to us, but the one thing that seems to be commonly expressed is our frustration and sense of isolation.  My son's mental illness has impacted on me greatly in many ways: psychologically/emotionally, financially, socially.  Being a carer can often feel like your living with your hands tied behind your back with no choice but to live with it and move on with life as it is.  Additionally, there is often  little sympathy/empathy from others or validation for your experience.  Looking after ourselves is the best we can do, but at the end of the day we are human, we are not made of steel and it's perfectly OK to feel how we do.  That's where support helps ,even if its just a pair of listening ears.  Just having that is often far more important and powerful than self-caring in other ways.  This forum is a great form of self-care because it gives us a platform to be heard, validated and understood and in doing this is helps to lower our stress and feel a bit better.  

Take care

Janna❤️

Re: Lost Hope

Not only that @Janna .... it breaks down the isolation of feeling that you are alone, and that is immense ..... to find that others are treading the same path, or something similar, and good advice and ideas are shared freely between one struggling carer and another ... and on the LE forum lived experience is doing that too ....

💗🌷

Former-Member
Not applicable

Re: Lost Hope

hello @Janna @Faith-and-Hope @appleblossom

 

I just reread your post and a thought came to mind.

I find if i go back to something when in a different state of mind, I pick up thoughts and put them in a different context to how i first perceived them, or even more so, had first missed that part of your writing.

you noticed a change in him when you had some relief yourself.

i am thinking that there was some relief for him seeing that you received that rest for yourself. he wanted you to get help but was unable to let you know or provided you with that help.

his thoughts are all encompassing and also include you even though he does not display that message to you. he is too weighed down with his own issues, similar to you being overwhelmed before with yours.

this probably sounds higgledy piggledy, i, when i am able to, step away from myself and my own thoughts and try to put my self in the shoes of the other person.

in this instance your son. he is as faith and appleblossom have pointed out going through male hormone issues on top of his mental health. he lives in your home with you and isolates himself, possibly sharing his thoughts with others on-line, perhaps not depending on his trust levels.

He does not converse with you, however that does not mean that he does not think about you, that he does not worry about you, still love you even though his thoughts are randomly flying across his mind. he just is unable to express this fact to you because you are the one person in his life he feels safe with. he can let go, he trusts you, he can just concentrate on himself no matter how selfish that appears to be.

i am not saying that this is a healthy situation, just looking at it from his perspective possibly, of how it actually is for him. This is how it is now. the future we have no control over. reading this now the situation will already have changed for you. the future has come and become the now.

i have written more but need to go over that before posting. perhaps i even need to post it elsewhere.

i do not want to overwhelm you.

thinking of you and your beautiful son

take care

Former-Member
Not applicable

Re: Lost Hope

 

I was discharged from hospital two days ago.

 computers! The bane of communication in my eyes. However this is the connection my son enjoys most within this world. This is his interest. This is his reason for further study. he is now 37. I have used them through my career as required.hence, why i hate them so much now. I use them now for emails and this forum. Also the famous "google".

my son also, like myself has a great love and need to be in a natural environment.

He believes in healthy diet but when unwell is unable to stick to this belief.

I spoke to him at the end of february I believe and there was a noticeable decline in his paranoia. This had been explained to me. His second assessing psychiatrist, which I organised with difficulty, whilst detained last year, advised me that without medication this would happen. The day he rang me, I had only that day spoken about him with my psychiatrist. I had decided to, whilst keeping him in my heart, move him over to the side in my thoughts. I was explaining that I needed also to have my main focus on my younger son who appears to be positive, leading a structured life and chasing his dream. He too has experienced the trauma, being part of the family. He needs as much attention.

That evening my older son who is living interstate somewhere rang me. That was in February as mentioned earlier. More than a coincidence.

Whilst in hospital, I spoke about my older son to a lady who had worked with intellectually disabled children and read many books. She was extremely interesting to talk to. She was born with a physical condition and her body was deteriorating. Her mind was incredible and her responses to me so in tune. The first I have encountered when talking about my older son.

We were talking about the illness of schizophrenia and how little is really known about it. Whilst we believe medication is needed to help settle, the main focus is the person, the greater focus must be the person. We also have an uncommon to others, feeling that schizophrenia may not be what the medical world has diagnosed it as. The mind travelling on different planes in the atmosphere, hearing voices as the medical world describes it, may be communication from those different levels. They are truly gifted.

In the middle of our conversation my mobile rang and I looked at the screen and froze. The no caller Id was displayed on the screen. Then it rang again which is what he does.

I answered and although terrified told him how lovely to hear his voice and that I had missed him so much. He stuttered badly. I listened for some time and then suggested to think about his diaphram breathing again. Silence and then a calmer voice, some stuttering. He had some paranoia about anyone hearing us speak and I reassured him. I asked him if he was safe and was he eating well (mum!) I know how important the diet is with mental symptoms. He brushed over the food subject. I was very surprised that there was no mention of money.

We talked niceties for awhile and I then asked him if he had something to ask me, was that why he was ringing. He replied that he wanted to talk to me. My heart melted. I told him so and how wonderful to hear those words. I told him how much I loved him, always will, nothing will ever change that. He brushed over that. Something came up about where he was living, I asked him if he had moved? He became defensive and asked me what I knew about that. I reassured him that his dad and myself do not know where he is living, remember? He settled.

I changed the subject to his environment. Did he have some trees nearby and calm places to go to, to walk. He replied yes, he had a beautiful view from his window. He now lived alone and described some of his furniture that he had acquired. He then told me that if I promised not to show anyone, he would send pictures then i must delete them straight away. I promised. so he said he would ring me back.

This he did we spoke briefly and then i asked him to keep in touch with me that i needed to hear his voice and know that he was safe. i told him that it was lovely that he finally was living in a place, he had also said he was studying maths which i said was wonderful. Again I told him that I loved him. Each time I said this to him there was hesitation on the other end. He was processing my words.

I dont know what was going through his head. I dont know if he remembers previous conversations, the abuse towards me. I dont think that he does, or perhaps there are remnants, random thoughts that are all muddled. I choose to believe that he is listening and adjusting in a way that he can.

The lady with whom I had been having the conversation with, had laid down on a settee nearby. She had needed medication but wanted to wait and let me know that she believed that my son had an empirical relationship with me. The invisible umbilical cord had was still there.

I looked at the photographs so many times. Whilst the furniture he had was clearly mismatching and old it was a part of his belongings now. I cried for him yet another time and am doing so now.

I wanted to look at those photographs forever to keep them near me. I wanted to hold that phone so close to my body that night as i slept. to cuddle him in my arms and tell him that i loved him so.

i looked one more time and then honoured his request that was so important to his safety in his eyes. i deleted the message. Gone from the electronic device, but forever etched in my memory. I wanted that to resonate through the invisible umbilical cord to his senses.

This is what I have. This is not what I would ever have dreamed of happening or would ever want for anyone else. This is however, so much more than I imagined I would ever have after hearing of his diagnosis, spending time with him before he left the state, listening to a voice i did not know that was so icy cold, filled with venom and hate abusing me.

a voice that asked for money to buy furniture, a thank you when i told him that i would send his last birthday and christmas money. I could not keep sending money as I had now stopped work. He accepted this at that time.

Finally, a conversation where he wanted to talk to me, he still knew me as his mum, his place to go when he needed to talk. That is priceless.

When medicated it is still possible to look into their eyes and see them, who they are.

I also spent time talking to a young male, diagnosed with paranoid schizophrenia whilst in hospital. I found that the first time I saw him and he spoke to me when I looked in his eyes and he returned the same look I knew. I reassured him that I would tell the person he was looking for where he was.

Later in the art room, he told me of his schizophrenia and his lady friend said wow you never tell anyone that you always describe it as psychosis. I looked him in the eye and said that I already knew, i saw the same look in my son's eyes. He spoke to me for quite a while about his life now, his girlfriend. I came across him a few times in the art room and watched him paint an item which was to be a present for his girlfriend. He needed help with an inscription on the inside. Myself and another assisted with the writing. He explained how he did not want the inside completely finished. He wanted her to be able to see where he had started from and the finished product. This was so beautiful to me. To share with her all that he had done in making her gift.

when he left i said goodbye with others. his mother was there, i told her how lovely her son was. She replied not to her and how hard she found it. she also mentioned about isolation within community not enough support. I gave her details of carers mental health and told her that he loved her still as he was going home with her. it was just more confronting and painful to talk to her because of his love. I wished them all the best.

We want so much for our loved ones. We hurt when they hurt. We pray we hope we berate ourselves. We have to keep an open mind, our hearts open so that we are ready to receive something, anything, no matter how far from what we hoped for. We can feel that reaching out for us in the way that they are able to.

I do hope that this does not disturb or exacerbate anyone's struggles, experiences.

I intend only to share that we can receive something even if it is not what we hoped for. We have to be open for anything.

Thank you for reading my thoughts.

Former-Member
Not applicable

Re: Lost Hope

Hey @Janna
Sending love
Darcy