Many ill people are in the state of denial. My experience is with people with dementia. Take my mother, who is now deceased, went around for over a decade keeping her stroke or "brain bleed" a secret. Changing doctors did not help but could not be avoided. So, when I was not around, she was getting a whole lot of eye exams, and they could not figure why she could see very well sometimes, and at other times, had hardly any vision. And she would collapse or fall now and then. The hospital said she fell because she was tripping on things each time. As time went on, I had to stick with her through everything and listen to all the garbage from the physicians at the medical school, until they finally let her see a neurologist and get some scans. That proved that all my volunteer hours of devotion were paying off. Why does it have to be that way? The patients privacy must be respected, and the doctor's have their HIPPA regulations. And somebody in between cannot eat, because he/she has to care for some one who "can do all their ADLs" (meaning there is nothing wrong with them) when they really cannot sign a form, cannot pay a bill, cannot cook, cannot find a bathroom, cannot make a bed, cannot take a bath, cannot tie sneakers, and sleeps with clothes on.

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My problem was that some of the doctors involved didn’t level with my mother, so I knew, guessed or suspected things that she didn’t know. It came to a head when the oncologist was trying with some success to talk her into yet another round of chemo plus radiation, which had been very difficult for her the first time. I was visiting and in the room, and asked how long Mum would have if she had the chemo. The answer was ‘probably 6 months’ (ie just longer than the treatment would last). Mum immediately said no. HIPPA wasn’t then an option here, so not even 'family' were actually authorised to know. ‘Privacy’ meant that some doctors treated family as the enemy who were stopping the doctors from controlling the situation. Perhaps it is sometimes true that family want the patient dead as soon as possible, so should be kept out of the loop, but surely it shouldn’t be treated as the norm.

I get what you're saying and think, especially in the case of brain disorders, we need to talk more about finding a balance on patient privacy versus public safety quite frankly.

My mom hid her dementia from me for a VERY long time. By the time I was aware, she was well into mid-stage (easy to accomplish as I didn't live locally). The fact that she continued to drive (and had multiple fender benders) was dangerous. The fact that she was managing the money for the church she belonged to was dangerous. The list goes on and on.

I think in most medical conditions, where there is no potential harm to others, patient privacy should be protected entirely. But when we're talking cognitive decline where impairment could lead to unsafe decision making that could directly harm someone else I think we need slightly different parameters.

mimosalane, ok, let me see if I can shed some light on this situation. Patients do have rights though HIPAA [Health Insurance Portability and Accountability Act], otherwise information can fall into too many hands.

My parents had kept from me that they both had cancer. I had no idea until the time came when I needed to drive them and sit in on their doctor appointments. But my parents were always very private about their health. It runs in the family, I never told my parents when I had cancer, neither.

My parents HIPAA was between the both of them. I was not listed until they needed me to act upon their medical Power of Attorney.

And there is always a chance that one's parent will not tell the doctor that something is wrong. With dementia, one can do what is called "showtiming" thus making them look and act like everything is normal.

mimosalane, I am moving your post closer to the front of the line. Hopefully someone who has had this experience can help you.

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