I've sent him some background and current info about her symptoms and he's responded that we can discuss during the visit. I have strict orders from her not to open my mouth. She has been so hateful the past two days, I'm questioning everything again. 😞
Hi Bunny - In those first few years when my Mom was more able to communicate with her doctors, I always was concerned about making her feel like I was talking over her or sharing information that would make her feel embarrassed. So whenever there was a question asked that she couldn’t answer or answered with less than truthful information, I would say something like “is it alright if I tell the doctor what I have seen?” Or “I would like to share what the last few months have been like with the doctor. Is that okay?” Anything you can do to let her know that you are not trying to talk behind her back or blame her. My biggest piece of advice is that it can feel like a lot of information is being thrown at you, so go in with some specific questions or behaviors that you would like to have addressed and be vocal - you and your loved one are basically one patient here because you are her best advocate. Also, ask how you should communicate with the doctor if you feel like you need help - many people have had the experience of “here’s the diagnosis, here are some pills, see you in 6 months/ 9 months/ a year” and then felt like they didn’t get any next steps. Seeing a neurologist and getting a diagnosis is the beginning of a path, and you won’t get all the answers to every question you have. This is the start of a more informed journey! I will be sending good thoughts and virtual hugs your way!❤️
BunnyLover, here is a link to an ALZ.org webpage that lists questions to ask of the doctor:
BunnyLover, I looked at my notes from my wife’s first (virtual) visit with her neurologist. In general, the neurologist asked about my wife’s symptoms, which I answered. She also asked what medical tests had been performed in the previous six months or so, which I also answered. The neurologist recommended two additional tests: 1) an at-home, 72 hour EEG (which was not completed); 2) an MRI of my wife’s brain (which was completed). The neurologist had access electronically to my wife’s treatment by a gerontologist over a two year period, so there were many routine questions that she could get answered from that source.
She'll forget probably! Usually they do a standard variety of tests- like drawing a clock and putting in the time they give them. That still could be done virtually. Barry could never do this! They'll also ask questions after giving them 3 words to remember. At the end of the questions they ask what the 3 words were. There may be things to answers that are not true- Barry said he had no children- he has 2 estranged adult daughters and 7 grandchildren! I corrected that. He didn't react. There were several other questions I had to "correct". They may also see her "alone" first and then have you join the discussion. If she does get angry, that gives them even further information about her needs and possible medications. Not going to tell you not to worry or try to second guess you. Everyone reacts differently. and it's no wonder you may have some additional anxiety because she's being hateful. It is good that you sent him information ahead of time. Blessings!
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