Can a neurologist make a correct diagnosis of cognitive impairment for my husband without my having to tell her what I have observed?

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...

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.

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.

In terms of Dementia signs, what would a difference in the MRI (assumed Brain Scan EMI ) show?

Robert

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.

Get CBDoil for him. This will keep him calm.
proven fact
Get him in a day program

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.

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???

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.

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.

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.

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.

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

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.

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.

This situation has always been hard for me, as a caretaker for a man with Parkinson’s and Dementia.
I ended up building a close relationship with his nurses, so I could let them know of any declines or other things I observed, and she would pass on to doctor. I will usually call her a few days before his appointment. I never like to talk about his illnesses “behind his back” but being it is so hard ( emotionally also)to talk about The declines I see at the appt. with him there this has worked really well.
I also found myself holding back info to the doctor for the reasons you described.
Being it is so important the doctor knows everything, I don’t see my method as talking behind his back, but rather making sure the doctor knows everything.
it also makes the appointment much more calm for my patient because the doctor does already know in advance, so he knows how to gently talk to him, the questions he asks ect.
I know everyone’s situation is different, but I just thought I would let you know what has worked best, for everyone, with the man I care for.
I hope you are able to find something that works well for you.
your husband is very lucky to have you!

For my father, the neurologist recommended a PET scan and it showed early onset altzheimers - he was middle 80's at the time. It never progressed further.

I kept a document going on my computer writing down new things I observed. Right before the day of the appt, I would condense it into a small list. 1., 2., 3., Something the doctor could quickly look at. I handed this to the receptionist when I signed Mom in. This way the Doctor knew what type of questions to ask. I saw him refer to my notes more than once.

I always emailed the Dr so I didn’t have to speak in front of my friend. But include in your letter or email, that this is confidential and do not tell your husband you wrote the Dr. In other words tell the dr not to throw you under the bus! Mine never did but I know of friends who’s Drs did.

Can you call in private and ask for the doctors email address? Due to the nature of the problem I’m sure the doctor would understand the need for discretion in your part.

I am a caregiver for my father and have run into this concern. Consider preparing a note with your conern prior to the appointment and handing it to the medical assistant to give to the doctor prior to the appointment. I have handed a note just after they call us in to go to the examination room with the other paperwork. I have listed at least three main concerns and this information seems to be helpful to the doctor and doesn't lend to a denial response or anger my father when the doctor asks certain questions as part of the assessment. The goal is to share what I have seen and help my father maintain his dignity as he experiences cogntive issues. My experience has been that the doctor will use this information to determine the way in which he provides feedback and explains to my father what is happening and the why behind the possible any restrictions he might prescribe.

Remember sometimes, they are aware that something just is not right and can become frustrated with themselves and scared. Typically, the person they love the most is the easist target for outburst and blame. I am often the brunt of the cold sholder or silent treatement. I have to remember that it might be the disease talking at times!

I am curious to learn what others think about this approach.

Monica, I haven't read all the answers but the ones I read are good. I just want to add that you are the one who notices things before anyone else would. I know I did long before others thought there was a problem. As others have said, you can call and talk to the doctor but sometimes that is hard or use the portals. I actually left messages with the nurse of things that were happening before the appointment and the doctor had this info when we went for our appointment. Be sure they do not let on you have provided info beforehand. Some doctors do not seem to understand as you would think they would about how this may make your husband feel. Another thing is to write a brief message and just pass it to the receptionist if you can. I always checked my husband in so he never knew I did that. That way I could convey concerns I had to his doctor.

My husband was 70 before things really progressed. He was also very mean and hateful to me and started on 20 mg of Lexapro. He was a different person after the Lexapro but when they started him on Aricept he went back to the bad behavior. The doctor stopped it for a month and then restarted the Aricept. That time it was better for some reason. That was about 6 years ago and he is now on a lot of other Alzheimers drugs and I'm dealing as best I can. Hopefully some of these post help you in moving forward. I pray for all of us as caregivers. Keep the faith and try to get through today because it's hard as you already know!

During a phone call with my father he told me things are happening with your mother, so I made a point to come up for a visit (lived several states away).  I too noticed issues with my mother that I actually wrote 2 letters one to her primary doctor (and neurologist) and made an appointment with primary when I knew I could be there to go with her.  Her primary asked how her memory was and my mom said fine, but I said mom you have forgotten a few things and on that note her doctor jumped right in and said that she was going to set up appointment with a neurologist just in case if she started having memory issues they would know how to proceed in treatment. 
Here are a few examples of my mom issues that were included in the letter plus many more that were listed:
My mom was forgot how to find the hospital my father was in and kept going to the apartment building my grandmother used to live in and was upset they wouldn't let her go up to my dads room. 
Every day my father was in the hospital I called my mother just to check on her, but after my father was home for 3 weeks one day when I called she said I can tell you now that your dad was in the hospital.  I told her that I knew that and I called her every night, but she didn't remember it.
My mom usually went with my dad when he went for physical therapy, but one time she didn't and when my dad came home the stove was on with a pan on it
One day when I called my father said they were filling out some legal paperwork and I could hear my mom in the back ground wanting to know how do I spell my name.
This is a very small example of issues my mom was having.  Those letters were a heads up to the doctors and at the appointments no fingers were being pointed as you did this or said that, the doctors already knew.  It made handling the appointment so much easier.   For the neurologist appointment, I was unable to get off of work and make the long trip, so my brother went with my parents and when the doctor told everyone that my mother did not passed and my mother has Alzheimer's, my brother and dad were shocked, but it didn't seen to faze my mother.  The neurologist put her on medication to help slow the progression of Alzheimer's, which she was on for a couple of years and then as the disease went into later stages we took her off of it.
So we now actually had a diagnosis's and now could learn and check into how to handle this, what arrangements needed to be made.  Unfortunately or fortuntely my dad passed away 7 months later after my moms diagnosis, so he did not have to see and try to take care of my mom as this dreadful disease took it's
toll.  My parents were one of the rare few that were so in love with each other for their 65 yrs of marriage.  My father would have never agreed to put my mother in a memory care center that would have killed him alone if he had to do that.
Do the letters with his doctor's, if you don't feel the doctor either didn't take the letters seriously or didn't read them then make a consultation appointment for yourself to talk to the doctor (realize you may have to pay for this appointment yourself).  Definitely go in with him at the neurologist appointment, because he isn't going to remember what the doctor says.

Consider writing down your observations - be as specific as possible. Send him/her your observations before your hubby's next appointment. The neurologist may ask directed questions about situations or scenarios at the appointment for further clarification. You are not betraying your husband by pointing out changes in behavior. In fact, if your hubby's behavior changes may indicate stroke of disease in specific parts of the brain - definitely helps the doctor to know where to look on an MRI.

Any good doctor would appreciate your input. You can share notes via private medical portal or fax, take them with you, or have a phone conversation with the doctor. He should also be able to visit the doctor privately as well.

Good info above, writing a letter is excellent but also if you have times during your day that you husband is not around or can hear you on the phone, you could call the doctor's office and ask to speak to the doctor or ask her to call you back. Unless you have a POA most likely she will not discuss your husband with you but you can tell her what you have observed and ask that it be entered on husband's records. You must do this! A few years ago I was concerned about my husband's alertness and memory and a day prior to his check up I contacted the doctor, explained what was going on and they did a more through check up and medication review and made some changes that I'm sure they would not have otherwise.

I always had a written list of things I had observed and just handed to Dr, when we had appointments. That way I did not have to "tell on him" in front of him. Worked well.

Prior to the appointment write a list of the things you have observed. Give them to the nurse with a note telling her to have the Doctor look at it before going in the room. The doctor will appreciate it. Any information you can give will help to make a complete diagnosis. I do this with my in laws and it is always appreciated. I am a retired Medical office manager and I can tell you, it makes it so much easier with no pressure on you. You are not breaking a trust with your spouse you are helping him and if he does have issues you will be his caregiver so, its better to do it right now. Good luck. Hope this was helpful.

If you take a friend or neighbor with you to the appointment, they can take your husband out of the room to distract him in some way to allow you to talk to the neuro. I’ve done this many times and understand that it’s not good to have your husband sitting there listening to his list of symptoms.

I have done what many others have suggested: I sent a note to the doc before my mom's appointment. I think the more information a doctor has, the better, since some things might not show up in  a clinical exam, but might be very present on a day-to-day basis. I even wrote a book about our travails: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale."  Best of luck.