If a doctor recognizes dementia, can they speak to family without HIPAA permission?
My mom, who was diagnosed with dementia in early 2019, made an appointment to see her old neurologist in her old town. She did this on her own and told me about it after the fact. She also made a plane reservation to go to her old town, and made plans to stay with a friend. I found out about all of this two days ago, all after the fact.
My mom continues to make non-sensical decisions, and as usual I am left wondering if and how I should intervene. There is no legitimate reason for her to be making the appointment with her old neurologist. She has not been his patient for three years. He had treated her following a seizure and prescribed her seizure meds. He did not diagnose her with dementia at that time.
I called her friend, and sure enough my mom had made plans to stay with her. In talking to her friend (this is my mom's good friend who I also know very well) it became obvious that my mom was making up excuses to see her old doctor and even lying about it to her friend. She also told her friend she "hates" the neurologist here and wants to see her old doctor. The friend knew it was wacky but still agreed, and told me she was fine to take my mom to the doctor appointment. Her friend was a little concerned with what would happen if the doctor wanted to run tests or have a follow-up visit. Apparently my mom told her friend if she had to go back, she would. This is a plane flight away.
I do not have HIPAA rights with her old neurologist. When my mom shows up to his office I can't imagine he won't notice her dementia! What happens in a case like this?
I should add that I did agree to take her to the airport, so in that way am I enabling this behavior? I know one of the main reasons my mom wants to go is she wants to see her friend. I don't want to prevent that part, but it's hard to just ignore all the other stuff she is doing.
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She seems with it enough to get a plane ticket, call friend to make arrangements to stay and make an appointment with her old doctor. Still pretty with it for a lady with Dementia. She has to allow you to be on the HIPPA form. Has her now neurologist said in writing she is no longer competent handle her own finances and Medical? If not, your POAs may not be in effect. I could check my Moms bank statements because I was on the accounts.
What I would do is send an email or fax to the old neurologist explaining that she has been diagnosed with Dementia. Then give the new doctors phone number and info. Explain that the trip was all planned by her. He is not obligated at this point to give you any info on Mom unless she allows it. You may want to suggest that when she fills out new paperwork that they explain the HIPPA paperwork and suggest she fill in that you can receive info on her. If she refuses, nothing u can do.
So sorry, I know this is frustrating but you are between a rock and a hard place here. Hope she gets there safe and back safe.
You are going to have to step back and let her fail or thrive without taking you with her. I know that is easier said than done, but she has made it clear that she is not interested in having you help her.
I think that I would tell her that you had something come up and she will need to get a taxi to the airport. You are encouraging her to use you and I think that the stress of her behavior is to hard on you. She is not only running her show but she is running yours. I also wouldn't see her upon her return until she has quarantined for 14 days.
You know that she is staging her defense and her ultimate attempt to get her license back. Thwart that anyway you can, send the current medical records and ask them to please not throw you under the bus as she will make helping her even more difficult, but that you felt it was imperative that they had her records from the treating neurologist.
Your mom can do what she wants, you have that same choice. Please protect yourself from her choices, you can not protect her from herself at this stage of things.
This upcoming trip where she made the doctors appointment is to where she used to live in Florida before moving to my area of Florida, so same state.
You know something ITR, I had not considered that her motive to see her old neurologist might have something to do with wanting to get her license back. Well, obviously it won't work, but that could be it.
I was telling Barb the other day that I had the feeling that things have accelerated with my mom, but I wasn't sure to what? I still have that feeling. I can't tell if I'm just seeing the fallout from the DUI still, or something more, but either way, I do have to protect myself. My anxiety is getting to me again because my mom's behavior is all over the place.
Thanks for responding, and giving me the wake up call that it's getting out of hand again. Time for the new boundaries.
I would not give a fig if she got mad.
I just waited in the car shaking my head. I knew she wouldn't be able to get a license. She came out with just an ID card, but couldn't stand to show me her disappointment and instead happily announced to me and DH that they told her everything she had to do to get her license back. I wanted to vomit. I kept mostly quiet because I was so angry and did not want to blow up.
She won't be able to do it, so I'm not worried about that, but the incident showed me my mother is progressing in her cognitive decline, and her narcissism is making things even more complicated than they would normally be. Not just from the standpoint of how she treats people (mainly me) I'm talking about how a narcissist reacts to losing their abilities. She is doing everything she can think of to hide her increasing deficits and in reality I think she is in a panic.
Anyway, I plan to take your advice and be more proactive in informing her doctors of what's going on with her, just so things are documented. That's all I can really do at this point.
Is there a directive of any kind so that information can be shared with ANYONE regarding your Mom?
This is just one issue you tell us about above, in what looks like it will be ongoing problem that is progressing.
I have a durable POA and a medical POA already in place, but my mom has not been deemed incompetent, yet. She is well aware that she has rights and she does not want to be told what to do, ever.
You are right, she IS an ongoing problem.
I am trying to have compassion because the loss of independence is so huge to her right now, and the recent loss of her driver's license is another huge blow. In her mind it's almost like the end of the world, but she is so difficult!
The only thing you do not appear to have done is send a copy of her diagnosis to old neurologist. Also let him know about her recent DUI and driving restrictions.
I also asked myself what would it accomplish if he had the dementia evaluation? Well he wouldn't have to guess as to why she was being so nutty, but no matter what he is going to have to address the fact that it makes no sense for her to resume being his patient.
I have no clue what to expect.
I have HIPPA rights with her local neurologist and primary care. She has an appointment with her primary care doctor in December and I will go, because I will have to drive her (so she can't refuse me).
I already had a long talk with her friend who is fully aware of my mom's condition. Her friend is quite capable so I'm not worried about my mom's safety. She does not fly unattended, and she is wheeled straight to the person picking her up.
It's the decision making on her end that is the problem. It really is driving me mad, but I'm in a very strange place with her- she has rights, and she knows she has rights. When I talked to her friend, we kind of left it as-- let her go to the appointment, what's the worse that could happen? The doctor questions her cognitive state? Her friend just wants to try and make her happier for those days, but it's not like anyone is going to let this be any kind of regular thing. I'm actually hoping that the old neurologist just tells her straight that what she is doing makes no sense.
Thanks for chiming in. I hate the uncertainty and insanity of this disease so much, reading sane answers helps.
Edit to add- I already had all of her medical records transferred shortly after she moved, so her local doctors have everything, but thanks for the suggestions because they are all good ones.
If you are her medical PoA you may be able to request a transfer of her medical records from her prior neurologist to any new doc that is local. You can also request her prior neurologist mail you their HIPAA form and then you and your mom fill it out and then fax it back to them. This is all they need from her. Stop feeding into the delusion that it's ok to fly to see her doctor. This will exhaust everyone and drain her bank account in the process. Totally counterproductive and unsustainable. Reserve your energies for the big issues at hand.
You should also have a discussion with her friend thanking her for her friendship and her willingness to help your mom, but explaining what's going on medically and that she should not accept her as a guest for the time being. She can make up any excuses it takes to fend her off from visiting. Having your mom travel by herself in her state of confusion is asking for trouble. And having her stay with a naive (and also senior) friend is not ethical. Tell her you look forward to bringing your mom in for a visit in the future when her health issues are sorted out. Also, invite the friend to come visit HER. Does her friend know how to FaceTime?
If you are your mom's financial PoA I would discretely take a deep look into her finances to make sure things are in order -- but my guess is they're not. Please don't hesitate to say no to your mom's plans (or just make up therapeutic fibs). You are shooting yourself in the foot and making your caregiving much harder. Please act quickly to become informed and act as quickly as possible to get things under control. It's hard on many levels, but it's very necessary and in her own best interests. I wish you much success!
My mom was first relieved by her diagnosis, because she had been having issues for 3 years and her doctor just kept saying it was normal aging issues and she knew that wasn't it. But as things progressed, she got to where she hated the neurologist. She would tell me... "He shows me this picture and wants me to copy it, then he just sits there watching all smug as I struggle." She wanted my stepdad (he always took her until she was much rather in the progression, then it was my job) to get a copy so she could "practice it and show him". Poor mama, it was so frustrating for her. Broke my heart.
The diagnosis must by scary for them. I know I fear it now and I don't even have any reason to at this point. My Mom had Alzheimer's and so did my paternal grandmother so I am cursed.
You are right, she is with it enough to make plans, so I'll just let the doctor handle it. I'm assuming he will give sane answers to her, after trying to assess why she is there when she no longer lives in that town. Maybe she will come back hating him too.