Patti2021 Asked July 2021
Here I am again... New to this life event called dementia. Has anyone had this HIPAA issue keep them in the dark about tests and diagnosis?
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Husband of 40 years, who *probably* has early dementia has just recently purposely taken me off the HIPAA release forms and so I cannot get any test results, any information like diagnosis or prognosis. He is still having many good days but is deceptive and hiding things. Wants everyone to be oblivious. Wants me to pretend all is fine. Refuses to ever go back to doc. Refuses all attempts at meds, help, etc... Help. I'm in that dark dark tunnel trying to find a glimmer of light! Has anyone else had this HIPAA issue keep them in the dark about the tests and diagnosis?
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What finally got my uncle to change his mind (and it took YEARS) was my aunt telling him that she worried far more not knowing what was going on than she would have being more informed. She thought he had cancer, or some other terrible thing that was going to kill him sooner than later. She also pointed out that she was less likely to fuss about it if she was aware of what was going on.
As it was, he didn't die from heart failure until nine years later, so she'd been informed in plenty of time before things got really bad. However, your husband is both scared of his diagnoses, but he's also being selfish and unfair to you. I think you should sit down with him and tell him that you'll respect his desires about his medical care, and if he doesn't want fussing or to go back to doctors or take meds, so be it. It isn't fair, though, that you are to be kept in the dark as to what to expect.
Of course, if he's not going to ever return to a doctor or go to the hospital, I guess the point is moot. There are no HIPAA rules to follow if he's just going to stay home and die.
Do you at least have your own affairs in order in regard to things like powers of attorney (don't assign yours to him), advance medical directives, wills, and trusts? Perhaps you can get your husband to agree to do those things, because they will enable you to follow his wishes. Medical POA will also allow you to take over his healthcare decisions and be completely informed on his tests, etc. once he's no longer competent to make those decisions himself, but you don't need to tell him that. What you can tell him is that absent this paperwork, the doctors will do everything they can to keep him going, including CPR (which breaks ribs). Is that what he wants?
You may have to work with the dementia a bit and make it look a bit like it's the two of you against the world to ensure he gets the normalcy he desires.
I hope u have POA. If not, now is the time to get it while he still understands what he is signing. You can get immediate so you are able to talk to doctors, etc now. Springing means you need a diagnosis before it comes into effect. Get financial and Medical.
Yes, time to protect yourself too. Get house put in ur name only or in a trust. This way Medicaid won't be involved. Then hope u don't need Medicaid for 5 years.