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My 67 year old husband has his follow up neuro appointment next month. In June, the neuro said she considered him "borderline" for cognitive impairment but she did not know at that time what form it might be. She wants to see him every 6 months. MRI was unremarkable, but she wanted a "baseline" MRI now for future comparison.


I do not want to tell the neuro, in front of my husband, things that I have observed that may...or may not...be related to cognitive impairment. We are asking her to rule out other possibilities such as ADD, HF Autism, etc. My husband remarks to me (half jokingly) now and again that he thinks I am trying to have him "committed." He is by no means in any middle or advanced stage of cognitive impairment. But he has short "episodes" of seeming confusion, he forgets things a lot more now and before his PCP put him on Lexapro he had gotten mean and nasty. He retired early and his brain is not being exercised as it should be...and he refuses to consider a part time job. I do not want to sit there at the appointment and, in front of him, go down the list of things I have noticed, only to have him blame me later. MUST I give input for the neuro or will the testing and her talking to my husband allow her to make a properl diagnosis without my input? Or will the neuro talk with me alone at some point?

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Send the doc a letter or a fax before the appointment with a cover sheet stating that it includes information you think is important but do not want to discuss in front of your husband. A neurologist can diagnose some types of dementia. But many types are pure guess work an not known until after death and only if an autopsy is performed.

The guesses are based on behaviors and other factors.
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gdaughter Nov 5, 2019
For us dementia slid in under our noses but it took an event (vacation) that triggered with a change in environment enough to notice...and me getting a call from the sibling not believing I thought our mother could travel...which led to a review of some primary dementia symptoms (having the list was nice), and my realizing, OMG, that yes she had pretty much every one I could give an example of. I documented this as succinctly as possible and faxed or mailed the note to the family medicine doc they saw and who knew me from going with them...love him....he advised me to stay home the next time folks had an appt and he did mini mental...and he was shocked himself because mom could play the role so slickly it was never evident. When we ultimately wound up with a neurologist appt, they had us fill a form out related to observed behaviors as well.
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I go with my Mom to her Dr apts, and they ask lots of questions of her, and she answers with HER version. And I sit off to the side and practice my "eye roll", and luckily my/her Dr gets it. I do correct some things she says.. but as nicely as I can.."you fell last week, remember?" I am also about ready to write the note to our Dr.. but it may be easier for me as we share a Dr and he has known me for about 30 years! And sometimes you just have to bite the bullet and tattle on them. My mom came home from my Aunts a few months ago in terrible pain, we literally picked her up and went straight to Dr. My Aunt had told me she was taking WAY TOO many Tylenol,, and I totally outed her! Was she upset? Yes,, but no one should be taking 20 Tylenol a day! Luckily she got over it, and we got home PT. sometimes you just have to do what you have to do, and let the chips fall...
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Monica19815 Nov 3, 2019
Oh, yes, the "eye roll"...I do the same, lol!! His PCP (we have both been going to the practice for many decades) knows what the eye roll means, thankfully, and nothing else needs to be said. I have been keeping notes in my phone since the last neuro appt. of things I have noticed, things that have occurred. I could send his neuro a letter. Or I could be brutally honest at the appt. and lay it all out. Sigh. It is the not knowing (no diagnosis) that is so hard.
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Prior to appointments I sent letters to primary care provider and a detailed letter to the neuropsychologist who tested my mom. I encourage folks to send doctors written observations. Just a short paragraph introducing yourself as spouse, adult child, etc. and then write the observations in a list of numbered items. This makes it easier for medical professionals to read. Avoid long, rambling paragraphs.

Example:

1. She routinely confuses the TV remote and the phone, then gets upset when the remote won't make calls.

2. She can no longer write a check correctly...puts the company's address where the name should be.

3. Her neighbor called me to report that she rang his doorbell at 2 am and said she was ready to go to bingo.

BTW...all of the above true for my my mom.
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Flamingo65 Dec 21, 2019
I have repeatedly written secure messages to my husband’s VA mental health doctor, and neurologist. Having big problems with both!!!!!
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I agree with Glad.

When you send the letter, include details like the time of day, day of the week and any significant things that occurred just prior. You may see a pattern of occurrences in the afternoon or evening, the day after an outing, if he has gone too long between meals, if alcohol is part of your lifestyle, after meeting an old friend, etc.

I worked as a MOA for years and often passed notes to the doctor prior to appointments. It is best if you can get the letter to the doctor at least a few days prior to the appointment, to give them time to review it.
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Most Doctors have "Patient Portals" and you can communicate with the doctor before an appointment.
Note your observations in this manner.
Be concise but give details if you can (If this makes sense)
Focus on the main concerns that you have.
You can also ask if the doctor would talk to you after or before the appointment. This might not be possible given time restraints.
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Monica19815 Nov 2, 2019
That was the first thing I checked and she is not one of the physicians who accept communication via the portal. She is a neuro at a large, reputable teaching hospital.
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Hi Monica 19815- Have you developed a sense about the “why?” Of your situation?
For instance, do you need to know why husband exhibits certain behaviors or is it more important for you to know why the changes in his brain cause particular problems?

Are you keeping a record, for yourself, of what you see that concerns you and the dates, time of day, and length of time the episodes occur?

Will the neurologist respond to phone calls from you? Might you ask her if she would consider a baseline psychiatric/psychological assessment a worthwhile addition to developing a meaningful profile for managing his care as circumstances move forward?

It seems to me that the line between maintaining client planning and self management and assuming more and more responsibility as caregiver is a very fuzzy, messy, gray area, with caregiver typically being in the more difficult and awkward position of the two.

If you see a NEED to gently take over the reins based on your observations of your husband, ask yourself if what you are considering is based on your husband’s safety, comfort, and overall welfare, then make your decisions accordingly.

If you are acting out of love and respect, your efforts cannot go far wrong.
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Monica19815 Nov 3, 2019
Thank you SO much for your reply. If my husband indeed does get a diagnosis of cognitive impairment there is SO much that must be done to prepare for our future and the future of his 92 year old mother for whom he is solely responsible (no brothers or sisters). Our home is not now conducive to housing someone who will have physical and mental limitations. We have 3 vehicles that I do not even know how to drive. If my husband does NOT have cognitive impairment that will cause him to decline, I do not have to plan for that future. If his symptoms are due to ADD or HF Autism or depression, we need to address the cause, work with it and move forward. I have no support system (family) near me to help me so knowing what is going on with my husband will help me plan for the future.

I do make notes when I notice something unusual in him. I did start a letter to his neuro, which I will send asap. One huge thing that has become more apparent in the past month is that I have to remind him of things over and over and over again before he will take action...like getting his car inspected, clipping the dog's nails, fixing a leak in a gutter, etc. This is becoming worse lately but, again, I ask myself, is it normal for his age? Or is he just not interested in any of those tasks so he forgets to do them? He has so many symptoms of HF Autism...I do not want him to be misdiagnosed with cognitive issues if that is not the real problem!

I have gently taken over the reigns with many things and he is more than happy to let me do so. Less for him to do! If he can go out to the garage and work on his projects all day, he is happy to do so.

I just need to know what is going on so I can start planning the future. And it was not even me who even considered dementia as a possible cause... it was his PCP...and I was shocked when he tested him in-office and referred him to a neuro.
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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.
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Flamingo65 Dec 21, 2019
Please see my reply to Rutgers above
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The neurologist can order a test called a neuro-psych evaluation. It is an objective test and takes about six hours. It can be done over two days. Here is a description of the test:

https://practicalneurology.com/articles/2016-july-aug/a-primer-in-neuropsychological-assessment-for-dementia

You do not have to give input as the testing scores will speak for themselves. Just ask the neurologist to order the test as a baseline.

My mom got one of these tests after her initial MME test indicated impairment. Those short tests like the MME that are done during an appointment are mainly screening tools, the neuro-psych eval is much more in depth and they can not be fooled.

It would be a good baseline for your husband whether he meets the criteria for dementia or not. Oh by the way, since the DSM-5 came out dementia is now called "Neurocognitive Disorder" and it can be major or minor depending on the test scores.

Good luck.
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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.
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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.
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