Hi, I'm new here & would like to talk to other carers

[jackiej]

Hi my Dad has prostate cancer He has been treated (successfully) since 2003 but just before christmas last year his blood tests showed a significant increase in his PSA level (457)and that the cancer had metastatised. He had a mega dose of radiation (which really knocked him around) and started a clinical trial of Thalidomide w/chemotherapy on 4th of January this year - during the 3rd 3-week cycle his kidneys failed and since then (27th Feb)all treatment for the cancer has ceased, as the doctors have been focused on keeping him alive and treating the kidneys. While he was in hospital he became very depressed, angry, abusive and unco-operative with everyone from doctors to physiotherapists, dietitians, nurses and, of, course, me and my mother. He has threatened to sue everyone involved in the chemotherapy treatment for trying to kill him! He manipulated my mother into sneaking sleeping tablets into the hospital and then screamed abuse at me and told me (and everyone in the ward) that he hated me for telling the nurses! Silly me, huh? I thought I was doing the right thing :( Anyway, since he's been home (Monday last week)the abuse and the anger has continued to escalate and I don't know how I should handle things - I understand that he's sick, I understand that he's scared, I understand that he's lashing out because he feels powerless and is facing his mortality, but I also understand the impact of his behaviour on my mother - and on me. I love him and my mother, and want to do whatever is best for both of them - I'd appreciate hearing from anyone that can relate to this situation. Cheers

[Just_Me]

Hi Jackie, I don't really have any advice about dealing with your father's anger. My mother withdrew from everyone, so it was very different for me. Though I did see sparks of anger from her at nurses and doctors at times. Have you talked to his doctor about this? They may have suggestions? Has your father been seen by a psychiatrist? Or social worker? Or pastoral care worker? He might need someone to talk to. Or what about anti-depressants? My advice though is to make sure you are looking after yourself too. Find someone you can talk to separate from all this like a counsellor. It's so tough and you are doing an amazing job. Feel free to talk to me any time. Tanya

[storm]

Briefly my partner of almost 25 years (late Nov) has grade 4 GBM brain tumour. Radio therapy is finished yet to have chemo over 6 months. Been through the initial stage of the physical & emotional ride. She is a highly intellent woman loved/passionate about books life culture & spirtuality. Starting to see the demise of her mind, her memory when trying to talk, loss of words, loss of reading frustration & anger surfacing. Hoping that there is just remaining swelling from the radio therapy or the heavy cold she is just starting to get over. Scared that this might now be permanent and marks the begining. I know the devastation of harrowing grief (her son died 16 years ago) but this tumor is a different road. I am looking for description of what is to come, the final stages so to begin some preparedness & maybe to travel (but some of the storys dont lend to much quality, just a ongoing demise) Geoff

[Hopeful]

Hi there, GEOFF, Just wanted to let you know the web address for a fantastic website that has a lot of info about a person's deterioration stages with GBM. I care for my husband with GBM and I know the website helped me as I was getting very curious as to what was going to happen to him. We are much further along in our journey though so I was ready to read that sort of information. I will warn you its not pretty, so only look at it when you are prepared to hear some hard truths. I know I wouldn't have been ready to read that sort of info back in the beginning stages of my husbands illness. Anyway the address iswww.brainhospice.com, hope it helps x JACKIEJ, so sorry for what you are going through. As if it isn't hard enough with your dad having cancer, you have to deal with what sounds to be some pretty horrible stuff from him. Is this usual for his personality? Or quite out of the blue? Is there any chance the cancer may have spread to his brain because that can often turn someone quite abusive and aggressive. Your mum must be finding this hard too, are you two close so that you can support each other? Anyway I don't really have any advice for you sorry just wanted to let you know that I am feeling for you. xx

[Hopeful]

Hi there, GEOFF, Just wanted to let you know the web address for a fantastic website that has a lot of info about a person's deterioration stages with GBM. I care for my husband with GBM and I know the website helped me as I was getting very curious as to what was going to happen to him. We are much further along in our journey though so I was ready to read that sort of information. I will warn you its not pretty, so only look at it when you are prepared to hear some hard truths. I know I wouldn't have been ready to read that sort of info back in the beginning stages of my husbands illness. Anyway the address iswww.brainhospice.com, hope it helps x JACKIEJ, so sorry for what you are going through. As if it isn't hard enough with your dad having cancer, you have to deal with what sounds to be some pretty horrible stuff from him. Is this usual for his personality? Or quite out of the blue? Is there any chance the cancer may have spread to his brain because that can often turn someone quite abusive and aggressive. Your mum must be finding this hard too, are you two close so that you can support each other? Anyway I don't really have any advice for you sorry just wanted to let you know that I am feeling for you. xx

[pmcpmc]

Hopeful - as an aside I just wanted to thank you for the brainhospice website link. Very very useful to what my father is facing and able to give me more insight and information than the hospital/doctors at present. x P

[SILLY]

Sorry I can't help with much but maybe you and / or your mother could benefit from some counselling so you could cope better. It's doubtful that you could get your dad to have some at this time even though it could possibly help him .I hope things settle down for you .

[Hopeful]

Hi Peaacal Glad you found that website handy. My husband actually passed away 3 weeks ago. As the website says, people go through all those stages at their own pace, and I must admit my husband took months to go through what some of those people went through in just days. Mainly because he was so young and fit so his body was hanging on even though his brain was so unwell. I did sort of see a repeat of all of those things happen again though in his last few days so I knew we were getting close (the pointing into thin air, talking to 'no one' etc even though he hadn't spoken for months!). And, as well as that, our 2 year old son told the nurse one morning that daddy was about to die soon - and sure enough he passed away that night! So, if you don't have a 2 year old around to predict the future, then I def recommend keeping up with that website! I would like to add that he died a very peaceful death and was very comfortable. I highly recommend taking all the help that you can from your hospice as I believe their help is why he passed so comfortably. His breathing was very rapid but he was very restful and he just slipped away in the night while we were snuggled up together. Hope your father (and YOU!) are doing as well as can be. Much love and respect to you for helping your father through this, it is not easy xx