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Set up a patient portal with the Dr. you can e mail them at any time ,If you feel like they need to know any changes just e mail.
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I don't know the medical answer but I would definitely find a way to speak to the doctor privately - without your husband being with you. It is most important that you do this without fail. Please do so immediately. Protect yourself from accusations from him by saving the medical people have tests, etc. to diagnose, etc. She needs to know everything.
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I went thru the same situation with my dad. What I did was I called the doctors office and actually spoke with the doctor on the phone.
I explained the issues that I see with dad and asked him to please not mention our conversation.
at the time of dads visit the doctor asked dad questions relating to what we had spoke of, dad of course said he didn't have that issue .
I said oh wait , don't you remember dad and I spoke to you about that very thing I saw.
dad said oh I don't remember that.
if the doctor doesn't get the entire story of some ones health,
they cant make an accurate conclusion of the problem.
sometimes toes have to be stepped on to help someone who
needs it...
good luck
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Davenport Nov 2019
Oy, I experienced same thing; I'd call doc (wait 5 days for a callback) and tell her what was really going on (behaviorally and physically). Next appointment, she'd ask him about those 'types' of things, which mom would totally deny/lie about, while the entire visit playing the charming, funny, bright, intelligent 'former' mom for the doc. I pray God that I'll never be that person, that patient--so at least something came of my 5 year caretaking experience! : )
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I would definitely communicate to the neurologist, probably in writing. Unless your husband has allowed the physician to discuss his diagnosis or health care directly, it is likely that the physician will not engage in a "back and forth" with you, but will listen and take in what you say. Try to be as specific as possible about what you observed.

This was all critical with my mom who could "turn it on" and fool doctors because she was so highly intelligent. Meanwhile she was losing her car, leaving the stove on, etc., etc. Our input was critical to her ultimate diagnosis.
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Monica19815 Nov 2019
My husband and I always give each other and our children access to all our medical information. Thank you for your reply! I am going to try to be honest with my husband's neuro and tell her what I have observed.
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Hi My dad is now 80 and was diagnosed with Alzheimer’s last year. For the first three months he had the minimum dose of the Exelon patch and the medication didn’t seem to change anything going on with him too much. But the next three months there was more dementia related activity going on. When we went in for the follow up appointment the doctor asked me about my dad, but I couldn’t articulate it. I decided to take notes and realized I was able to write down 3 to 5 things a day that were going on with my dad. I got all my notes together and emailed them to the neurologist the day before the third follow up. He waved the stack of papers at me and said wow that’s a lot of information and upped the strength of the patch for the third time. I don’t think he used any of it for his diagnosis, more like a reference. My dad is still articulate with his “practiced stories” and tried to fool him by the usual means of camouflage; stories and jokes. I realized the doctor ( over 20 years experience) has seen this kind of behavior before and doesn’t care much about what I write. He knows what’s going to happen and will only administer medication to “slow down” what’s going on in my dad’s brain. My dad thinks my notes are the reason why he is being treated and blames me like I’m a tattletale. Then he flip flops and says the meds are making him better. He’s not getting “better” on the Exelon patch even at the highest strength of 13.3 mg. He’s worse off. I now take care of all personal and business
financial matters, drive, shop, cook, clean, do yoga with him 3-4 times a week, take him traveling, movies, opera, plays, festivals. He bathes, dresses himself ( but there are problems with that), and tells his stories and jokes. He sometimes reads and always watches the news on his iphone. He’s really slowed down and gets tired so easily, but can still walk. He wanders. I’m lucky it hasn’t digressed to the point of incontinence/bathing/ being mean. The most uncomfortable thing for me is his inhibitions about sex are diminishing, but that’s for another thread.
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Hi My dad is now 80 and was diagnosed with Alzheimer’s last year. For the first three months he had the minimum dose of the Exelon patch and the medication didn’t seem to change anything going on with him too much. But the next three months there was more dementia related activity going on. When we went in for the follow up appointment the doctor asked me about my dad, but I couldn’t articulate it. I decided to take notes and realized I was able to write down 3 to 5 things a day that were going on with my dad. I got all my notes together and emailed them to the neurologist the day before the third follow up. He waved the stack of papers at me and said wow that’s a lot of information and upped the strength of the patch for the third time. I don’t think he used any of it for his diagnosis, more like a reference. My dad is still articulate with his “practiced stories” and tried to fool him by the usual means of camouflage; stories and jokes. I realized the doctor ( over 20 years experience) has seen this kind of behavior before and doesn’t care much about what I write. He knows what’s going to happen and will only administer medication to “slow down” what’s going on in my dad’s brain. My dad thinks my notes are the reason why he is being treated and blames me like I’m a tattletale. Then he flip flops and says the meds are making him better. He’s not getting “better” on the Exelon patch even at the highest strength of 13.3 mg. He’s worse off. I now take care of all personal and business
financial matters, drive, shop, cook, clean, do yoga with him 3-4 times a week, take him traveling, movies, opera, plays, festivals. He bathes, dresses himself ( but there are problems with that), and tells his stories and jokes. He sometimes reads and always watches the news on his iphone. He’s really slowed down and gets tired so easily, but can still walk. He wanders. I’m lucky it hasn’t digressed to the point of incontinence/bathing/ being mean. The most uncomfortable thing for me is his inhibitions about sex are diminishing, but that’s for another thread.
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I used this when I was my Mom's caregiver and now with my husband. When we enter the Doctors office, I pass a note to the receptionist or nurse, with a note on top to pass it onto the Doctor before he or she is seen. That way the Doctor knows the full story and they very much appreciate that in advance of seeing the patient. It works out very well. That way nothing is left out.
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Send a letter to the doctor prior to the appointment with your observations and what you mention here about not wanting to give these details in front of him. At least that gives her more detailed info that may not be obvious to her and the opportunity to ask appropriate questions...where you could add some info in a manner that he wouldn't feel like you think he's crazy. Something like, well remember that day that XX happened???
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You don’t have to say anything to your neuro, but if it helps get the right diagnosis I would. Unless he takes an in-depth test, it may not show up. But it will in time.
My husbands neuro talks very plainly to my husband, tells him everything about his disease, etc. No bedside manner whatsoever. We have our list of questions for the visit. We talk about his progression & options all together. My husband was offended early on by some of her remarks, but we know she’s the best neuro in our state, and I think she means well. In my experience, they all have interesting personalities.
I’ve read in this site how people don’t ever tell their LO they have dementia, but my husband and I talk about it, along with everything else. Less often now as his lucid times are fewer.
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Get CBDoil for him. This will keep him calm.
proven fact
Get him in a day program
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You could email his neurologist with your concerns prior to the next appointment. Tbh, I don't know why you WOULDN'T provide your input. It should be given.
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In terms of Dementia signs, what would a difference in the MRI (assumed Brain Scan EMI ) show?

Robert
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Without even reading comments from others, my first reaction to your questions is you need to express your concerns to her ASAP - it doesn't need to be in front of him, it can be via a letter or if doc has a portal system.

The reason I say this is consider how long a doc actually sees you. They don't know the "real" you and don't see you much more than 10-15 minutes out of the day, here and there. That can be the "good" 10-15 minutes that particular day. Some people can whiz through the mini exam given to test for cognitive decline, yet can't remember they've repeated the same thing over and over in 10 minutes at home! YOU are there every day and YOU have known your husband for many years and therefore know him best and YOU have observed the changes. Clearly he isn't aware of the changes and/or isn't going to express his own possible concerns or fears.

You should provide whatever insight you have - some things you have observed may be okay, but others may assist the doc in making a better diagnosis.

You can provide this insight privately to the doctor. It could be invaluable in monitoring/assessing his condition! Tests and exams can only tell them so much, sometimes nothing really. Sometimes the tests and exams either don't detect anything, or the person can sail through them easily, but they are not able to function normally at home.
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Monica19815 Nov 2019
I composed a letter to his neuro this morning and will mail it on Monday. I laid it all out as best as I could...what I know about his history (we have only known each other 7.5 years), his gifts and talents, all the losses he has experienced in those 7.5 years, cognitive issues I have been noticing, how his life and dreams and plans have been dashed since the death of his brother and father. I implored her to take everything into consideration and make an accurate diagnosis, be it ADD, HF Autism, depression and/or cognitive impairment. I asked her to keep my letter confidential and not let my husband know I sent it. I have much anxiety about his December follow up appointment. But I feel better now that I have been able to communicate with his neuro.
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I read your comment about needing to know so you can make plans for the future. I have skimmed through the comments, focusing most on your replies. Whether he has some cognitive decline or not, those plans should be made NOW. Your situations could change at any time, unrelated to what is going on with him at the moment.

Of concern is his oversight for his mother. Is there a contingency plan in place? He has no siblings, and if he is incapacitated by ANYTHING, who will see to her? Is she capable of naming another (additional) person to handle her affairs? If not, you will need to seek out legal advice as to how to proceed.

Secondary is having POA set up for you both. In the event that he is going down the cognitive decline path, having this will allow you to sell the cars you cannot drive and manage everything financially and medically. If at all possible, there should be a backup for you as well. It is so much easier/better to get it done now, while he could still make decisions. Later will be hard enough dealing with whatever life brings your way.

We have no way to know what the future brings to any of us, so it is best to have some precautions in place. Having a will, POAs, trust(s) if needed, burial arrangements, etc set up while you are both still capable is the best you can do. We had all this done with mom/dad when dad wasn't well and then revisited it when mom developed early dementia. We are glad we did all that before it was too late! It would have been more difficult AND more expensive to have to go through the court system to get guardianship.

I am remiss in doing this for myself, but only because currently there are no funds to cover the cost (looking at negative balance by end of year! working that out as best I can.) Starting in March, the financial situation will hopefully be under control (there will be a little relief before that, but not enough to cover the cost needed) and I want to get all that sorted out, to make things easier for my 2 kids AND to ensure my cats will all be taken care of (neither of them want the cats :-( or to take care of them.)

Please do consider getting all these tasks done, but stress to your husband it is just something everyone should do (and it is!), don't bring up the other issues.
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Monica19815 Nov 2019
I truly appreciate your reply. Thank you! All of "our" legal paperwork is in place, as is his Mom's...except for a contingency if my husband cannot care for her properly. Our attorney...who knows us and our blended family well and has put in place ALL legal paperwork including for his Mom...will be consulted immediately if my husband's next neuro appointment shows any decline at all. My husband has agreed with this. But everything else is in place. DPOA's, wills, funeral arrangements for me, husband and mother in law are all current and in place.
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Our first neurologist asked those questions in front of my wife to ny dismay...we never went back....prior to meeting with the second neurologist...I talked to them in the phone and provided my observations......we discussed their approach before I agreed to bring my wife in for an evaluation...
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