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I send my husband 's doctor (who is also my doctor) texts through the patient portal about what is REALLY going on with DH's health.
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My husband has anosognosia. He is incapable of recognizing his health problems. He thinks I’m “off my rocker” when I bring them up. I attend all of his doctors appointments however before he is seen I write a note to the doctor that he can review before he begins the appointment. I let him be seen alone with the doctor and join in the exam room at the end. This is the only way I can be assured the correct information is getting thru. It’s not a perfect solution but it has helped.
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When my mom had Alzheimer's, she sometimes wasn't capable of telling the truth, because she often couldn't remember events from 1 day to the next, (or 1 minute to the next, at times). In 1 instance, I sent the doctor a note, explaining my concerns. I had Durable Power of Attorney for my mom, so I was allowed to discuss her medical situation with the doc. Also, I noticed with my parents, that everyone can have a different interpretation of symptoms. For example, my dad might say that he coughed a little, but my mom would say he coughed a lot, (due to COPD). I tried to be as objective as possible, regarding their health, because I knew in some instances, they might not be that forthcoming with a doc.
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She my have Ansognosia , in the reality she lives in , she my truly believe there IS nothing wrong with her . My significant other does not believe he has any problems. He is 5-6 years into dementia and has lost the ability to do almost everything. I am at all the doctor’s appointments and fill the doctor in on what is going on with him . He make a big grumble and says I crazy but forgets by the time we get to the car .. Sad 😞 to watch .
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BillSr: If you're reached an impasse where your DW (Dear Wife) is not going to inform her physician of her condition, perhaps you'll have to take the lead and have a private convo with him/her.
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I attend appointments with both my husband and mom. I told them both if you're not telling the doctor everything then how can they help you correctly? So we agreed upon sitting down before the appointments to discuss what's going on and writing them down. We take the paper with us and if they do not tell everything on the list I am allowed to give the doctor the paper. Sometimes they don't remember everything and sometimes they are embarrassed to talk about it. But they know I love them and we are in this life together.
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Great answers here today so won't reiterate but please get the HIPA release signed to give doctor(s) permission to communicate with you. If you are able to learn to use (with the computer) the Patient Portal, that's a great way to give your perspective on her condition. If not able to use the Portal, a handwritten note with condensed concerns outlined can be given to doctor. Handing it to the nurse or PA is OK, but doesn't give them much time to read as your wife enters the consult room, so condense into "bullets" of info. Get FAX number of Dr's office and you could FAX ahead the "real information" to the doctor. Even before the HIPA is signed, you can write a summary to "speak to" the doctor. Your wife cannot be helped by medical professionals unless real information is shared, and sometimes that means being in the doctor's office with her, to gently give the reality of the situation. You can tell your wife "I am going to take notes on what the doctor's recommendations are as it's important that we remember all recommendations" Doctor appointments are useless unless the actual symptoms of concerns are honestly shared, either verbally (by you) or in writing (patient portal using computer or by a typed or handwritten summation. Your spouse will not be sharing the symptoms of concern, and although awkward: You must be the informant of reality.
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My mom would flat out lie to the dr. She looks like a skeleton and won't eat properly. I won't allow potato chips and pretzels to be her main courses or even her snacks. Snack on an apple, banana, carrots, celery, it's all available. If she wants salty, sprinkle the Himalayan salt over it. So when she thought the dr would say chips are ok, she told him she only eats a small bag and raised her hand measuring the air with her thumb and finger. I said she was buying a party bag once a week, right there in front of her and told her that the dr needs to know the truth or there is no sense in going. She said, "And WHAT'S wrong with THAT?" The dr told her that since she was so severely underweight, that she needed to make ALL her calories count. He told her to eat eggs, avocado, fish, chicken, vegetables. I said, 'So, a Mediterranean Diet?' He said EXACTLY.
Some might say I could have approached it differently, but I am not going to waste the dr's time when in OUR case, my mom was lying, and knew she was lying so she could later say the dr said chips are ok.
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Are you going into the room with her each time? In our case, my husband was telling the truth…. As he saw it. It wasn’t until I was there that we finally began the journey to a true diagnosis. My husband only knew what he was feeling on the inside… I only knew what he looked like on the outside and it took both of us to give the doctor a clear picture of the symptoms. The doctor would ask a question… he said no and I would explain why I thought it should be yes. The next question would be his yes and I’d be surprised because I was not aware he felt that way. My husband and I both learned a lot that day. After that I went to every appointment. Sometimes he may get annoyed, but the doctor can only assess the symptoms he is aware of. When it is an awkward symptom, I write a note ahead of time.

The problem in our case was the nurse would take him into a room, have him sit on the table and he would say his arm was bothering him. The doctor would come in and all the focus was on why his arm hurt not being aware there had been a lot of other symptoms to go along with it so he would be given pain relief and referral to PT. The doctor would leave the room, never aware he also had issues with his gait because he only saw a man sitting on the table because my husband was not aware of how his gait had changed.

So the truth can only be seen in the eye of the beholder and it sometimes take the eyes of the loved one, the care partner and the doctor to get the whole truth.
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Thanks for the idea to call MD privately.
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My brother and I requested a private appointment with my moms doctor. He billed her insurance. We were able to discuss the at home issues and he then did the testing. She has Lewy Body and could showtime at all her appointments.
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Same scenario with my DH appointments. He wants to be seen ASAP then minimizes symptoms when examined. Objectivity is essential; I clarify as needed, immediately, face to face. Yes, it's awkward occasionally but you cannot achieve help without accuracy. Jump into the conversation, every time.
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Animallovers May 2023
I do the same when I go to my mothers appointments with her. She keeps threatening to never let me come again and complains but when the doctor is able to address the problem my mother admits that she’s glad I mentioned the issues and thanks me. We go through that pretty much every time! There have been a couple of times when I have been able to catch the doctor aside and mention things I know my mother is very embarrassed by as well. I also try to make a list of the issues my mother has mentioned then I go over them with her before the appointment so she knows what I am concerned about and will be asking the doctor about.
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Posters gave great advice so I won’t repeat it.

Care to elaborate on this situation? Is your wife afraid? You are welcome to vent. We are happy to listen to your concerns about your wife.

Wishing you and your wife all the best.
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Even with HIPAA laws, you can inform the doctor. Depending on your situation, the doctor might not be allowed to answer questions about the patient, but you are still free to tell the doctor what they need to know.
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You can also send a letter to the doctor by regular mail. That's how it used to be handled before patient portals. You won't get a reply, but when I did this for sick loved ones, I'd get a nod from the doctor or someone at the desk would say that doctor received my note. It helped.
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MACinCT May 2023
I sent letters about my mom during the early stages
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You either go into the patient portal and tell them yourself or you give a hand written note to them(or their nurse)prior to heading back into the exam room. That way her doctor has a heads up as to what is really going on.
I had to use the patient portal every time before my husbands appointments and it worked really well, and the doctor told me how much he appreciated it.
Best wishes with that.
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NelleHtur May 2023
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