Thanks so much to harker and Jules2 for your insights about the Dex. The psychiatrist got him off it instantly, so you were right there. Thanks, also, to you both and Maddie86 and tfox64 for your support. Invaluable at such an alone time. I hope that I can support others as you have supported me. But a week is a long time and I have a sad story to tell. Not too long after my last post Ray, my husband, became far too violent and aggressive for me to handle - he was "rewiring" the power to the house by playing around in the meter box - luckily he just turned everything off - so I had to ring 000 [I wasn't hurt too much]. The cops had to come to protect the ambos. Small country town, remember, so I know the ambos personally [Cop, too, but he was off duty]. The neighbours, bless them, came from everywhere. I didn't realise so many people were looking out for me. I wasn't there, but I was told that they had to sedate him to get in the ambulance. He's been in the hospital since then - last Friday. With a security guard watching him. Cops have told me not to allow him to come back here - they are worried about my safety. I must say that the police have been wonderful. Might just be country cops - might not happen in the city - but they have checked on me and Ray, and they actually care about us. Considering that it's a medical problem and not a police problem... The next morning after he was hospitalised the psychiatrist sorted his medication. No more Dex, no more Endep and weaning off Oxycontin. No reduction of violent episodes, but at least they weren't directed towards me. They concluded that it was either a] the cancer itself; b] the chemo; c] the drugs. [Not, as the oncologist tried to indicate "marital problems" - haven't decided if I'll confront her with my solicitor yet]. He went to hospital on Friday night and I didn't see him till sunday. He was pretty out of it then. Monday, the psychiatrist rang and said ray was really good and nearly ready for discharge, but he wanted me to go and give them my input. I did, and Ray was about 50% of my husband. Nowhere near right. But it looks now like that is all I'm going to get and I'd better be grateful for it, because that's the last time he was lucid. He's off in his own world now and I've lost him. I stuck to my guns and we did the big planning meeting on Wed. 11 Health Professionals and me. Should have been me & Ray, but he was too sedated to attend. So, as of Wednesday, he was going to respite for 2 weeks, effective monday. Don't think so. The psychiatrist rang me today and said he'd done everything he could - the problem must be cancer in the brain. I saw Ray today. He knew me, I think - but as someone in a computer game. He's on his own planet and I've lost him. My eyes are leaking. Thanks for listening.
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Super Contributor
Lynne, what a tough, tough thing to go through. I really feel for you. Sending lots of hugs. love Emily
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Super Contributor
How scary and sad at the same time ! I can only imagine how difficult this must be for you .
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Contributor
Hi Lynne, What a horrible place to be in and what a horrible place for ur partner to be in. I am sending u my warmest wishes and prayers. I must say u r an amazing woman, to have faced that planning meeting alone. I worked as a social worker in mental health for 4yrs and I know how the system works. I can say I have been to many meeting where the carer is not respected or listened to. I do hope the treating team listened as u are an expert in this experience - it is ur life and ur partners lives! If there are future meeting I would suggest taking a support person for urself - for emotional support and for backing in case u are not listened to. Even if some of these concerns are from the brain tumour at the end of the day the healthcare system needs to treat the symptoms - meaning cancer symptoms and psychological symptoms. I have a thorough understanding of psychotropic medications so if I can help answer any questions pls ask away. In no way am I an expert however I do have clinical experience in those areas. As for the cancer experience I have rode this crazy ride with my husband for 12months in feb . The best thing this experience has taught me is to be strong, link with the wonderful people on this site and NEVER be afraid to ask questions. I hope ur partner is doing much better soon and I hope u have the love and support u need at this time. Sending a big hug, please take care and I look forward to listening more to your experience. Good luck 🙂 Rubes
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The really sad thing is that none of that was HIM - all the cancer, or the drugs. I'm hanging onto the image of the real Ray. Got lots of family videos, luckily. I hope they'll wipe out all this horrible stuff when I have time to look at them later. Lynne xxx
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Thank you so much for your comment. I found it really helpful, as you understand as a carer and also as a health professional. The public hospital system, even though there are lots of really caring individuals, is still a system and it wants to roll over people like me. I did have the support, at that planning meeting, of a lovely lady - the pastoral care worker with the palliative care team. She wasn't meant to be at the meeting but I invited her. I thought I had the right. I was determined to stick up for myself and Ray and, even though they tried to steamroll me, I didn't allow it. The oncologist didn't attend, but sent her registrar, who tried to blind me with science - not easy, as I have Degrees in Science myself. I actually pulled him up and asked him to put it in layman's terms, which threw him a bit. After that it was easy, as he was the first one to speak. In the end, I got everything I wanted. Hollow victory, though. Ray's got a temp of 38.9, which means neutropenia, and they're not giving him IV antibiotics, so he's quite ill. On a morphine pump, too. Just a matter of time now. I'm praying that it's quick and easy for Ray's sake. He's suffered enough without the indignity he's going through at the moment. He recognised me today and whispered "I love you", which means a lot. Lynne xxx
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