What is the point?

Family
1

Not sure why im here, because i feel everyone is suffering a lot more than me :sad:

Nevertheless, i am currently trying to support my husband through his latest sz episode.

Over 10 years ago my husband was sectioned. He came out after about a month with Medication. Life went on. Occasionally, he would not take his meds but i was able to spot differences in his personality early on. Find out he had stopped his meds and encouraged him to start them again.

Earlier this year he stopped taking his meds. His personality changed a lot. I could not convince him to start them. Time went on and it was a living hell. The numbers, the people following him, various devices recording him etc etc.

Ive just accepted he was mentally ill. I got his prescription regularly. Made sure he took his tablet. However, this time, this week in fact, we went to A&E on Drs advice. He had started talking to voices in his head. He had never done this before. It was there that i discovered he is a Paranoid schizophrenic.

Why was i not told this and given support? I am a mess right now. Through August and September i was undergoing Radiotherapy and chemotherapy for Cancer. Mh husband was giving me lifts, but he was alwsys distracted by people talking about him and following him. He would carry his phone around recording people and taking photos. It was not an easy cancer fight when i had to try and deal with this.

Anyway, im now Cancer clear. But i feel no happiness. Surviving cancer and dealing with sz is like, whats the point??

He is back on the meds. Only 2 days. Im learning to cope with how to deal with it. Im getting better, not so angry, because i have read on line what to do/not to do. But its so hard.

He is currently off sick with work. I am too. But aiming to go back full time soon.

We have gone from 2 full time wages to benefits. I have discovered he has over £20k in debt.

Cancer/schizophrenia/benefits/debt :cry:

2 Likes
2

Hi Mrs OLG. I’ve dealt with my wife’s care in both the UK and the US, and the one thing I would say about the UK is that I think the NHS tends to underplay the symptoms and diagnosis or severe mental illness. In my experience they largely ignore the partner and/or carer when they have concerns and are observing a change. Often they seem to fall behind data protection and patient confidentiality to avoid engaging with the carer/partner. In my case the local mental health team took my wife’s paranoid accusations against me of domestic abuse to be the gospel truth in spite of her diagnosis. She has a disagnosis of Schizoaffective Disorder which has aspects of schizophrenia, but also mood disorder aspects. I was not convinced her diagnosis was correct anyway, but they were steadfastly ignoring me complaining that they were not taking the mood disorder aspect seriously.

Please put one thing out of your mind: You are not less deserving of sympathy because you deem yourself to be in a better situation than others on here. One of the reasons people like us stick with our partners through thick and thin is because we are generally not selfish, we have true empathy for our partners and others, and we often see other’s plight as worse than our own. It sounds like you have been in a very difficult situation for a long time, and now to have to cope with cancer treatment whilst continuing to support your husband, and without the support you need from him, that is a very hard thing. There will be plenty of people on here thinking that you are in a worse of situation than they are.

Things in general have to change in our country. I genuinely feel I have been betrayed by my country. I brought my wife here thinking it could not be worse than the US, but what I found was indifference and negligence, with a few noble souls desperately trying to go against the grain. Now my wife is back in her home country, cycling through the illness. Just a few weeks ago she adored me and wanted me to visit her as soon as possible. Right at this moment I should be boarding a flight to go an see her. But sadly, she flipped again, and who knows if I will ever be in position to get a grip on this. My wallet is almost empty too. I want to get a movement going because so many of us have been suffering in silence, unable to find each other, getting emotionally and financially drained. So many of these delusional illnesses are effectively symbiotic, because in order to survive and keep people out of long term institutionalization, there normally needs to be one or more people absolutely draining themselves to keep things under control. That means those caring people develop symptoms themselves. We must be a priority.

I have been starting by trying to get my ‘Fog of Care’ podcast going (https://open.spotify.com/episode/7IA8JTkiFvsaPYAhQcKIAz), which has just been monologues for the first two episodes I have done, but I am hoping to bring others in soon and to really get a movement going for all of us carers around the world.

You are a special person for what you are doing in the face of anything. Please consider staying in touch with us all on here. We keep on lighting the beacons all over the world so we know we all exist.