Dad's wife blocking information on dx and treatment-advice?

bzybzybzy · New User Joined: 10 Oct 2009 Posts: 7

My dad was just diagnosed with a malignant brain tumor a couple of weeks ago. My sisters and I all live quite a distance away. I'm a 14 hour drive and the closest. I flew into town after his brain surgery (which did not even yield a biopsy - just paralysis on his left side) to help with his rehab. Once I was in town, I realized that his wife is keeping information from us.

Can anyone give me advice on how to find out what's happening? I don't think his wife is purposely trying to leave us in the dark. I just think she is in shock/denial. My dad's short term memory is not good right now due to the tumor, so it's hard to tell if he even remembers what he's being told. My dad has never been a person to carefully look at details and make a decision. He just makes his decisions impulsively. His wife (or someone else) needs to be the one to collect information and let him know what his options are. His wife doesn't want to upset or scare him, so she's letting him make decisions without complete information.

After a long (not quite legal - privacy laws and all) conversation with my dad's internist, he's really concerned about the course my dad is on. My dad and his wife have left him completely out of the process. He did some investigative work for me and was able to find out that my dad has been admitted to the hospital three times since I left. One lymphnode was removed and a full pathology report is available. With that report, we can probably assume that my dad does not have a brain tumor - instead he has stage IV something else... My dad and his wife have both refused to look at the report, so we have no way of knowing what type of cancer he is dealing with.

While I know that they need to decide together how to proceed, I feel like they're both just sticking their heads in the sand like a couple of ostriches. One of them needs to start taking some sort of action, and I don't know if there's anything I can do to help that along>>>I am so unbelievably frustrated.....
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Mom died of AML after an 18 month battle including chemo, radiation, and a bone marrow transplant at the age of 48.
Dad diagnosed with prostate cancer, lung cancer, melanoma, and possibly brain cancer (could be mets) between the ages of 70 and 75.

bzybzybzy · New User Joined: 10 Oct 2009 Posts: 7

I did ask my dad if he would add one of his children to his HIPPA forms, and his wife told him that it would be too confusing for the doctors. He said no. (I should have asked him in private!)
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Mom died of AML after an 18 month battle including chemo, radiation, and a bone marrow transplant at the age of 48.
Dad diagnosed with prostate cancer, lung cancer, melanoma, and possibly brain cancer (could be mets) between the ages of 70 and 75.

brainman

Oh goodness! It is hard enough to have a father with cancer without this family issue. Unfortunately, it is your father's decision to make (not his wife's). Unfortunately, she has a powerful influence over him at this time. He may think (or at least feel) that it is more important to keep her happy.

Depending on your relationship with your father, I would talk with him again. Make it clear to him how important it is to you to have access to him. If you are not listed on his HIPPA forms, if he gets to the point where he cannot speak for himself, she can keep you away from him not even letting you visit. I hope she is not that insensitive but she could go that far. As for the claim that your name on that forum would make things confusing to the medical team, that is a bunch of ___. Speaking as one who has been on the medical provider's side and on the patient's side, that is the least confusing issue. They know who has HIPPA rites and who doesn't. They do not have to check every time you call or try to visit to make sure. Most people do not put any restriction on that form. It is very easy for the nursing staff to remember those few who do have restrictions.

But the main thing you need to do is make sure your father understands your need to be as informed as possible of his situation with having to trouble his wife for updates.

Good luck.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
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My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
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