Alzheimers care and treatments: Consult with Mayo Clinic?

@upgirl2013 I admire you taking the steps to get a diagnosis. How old is your husband? My husband was also diagnosed in middle stage and takes the same meds. He does not like that he no longer can drive. I can still leave for a couple of hours to go to gym or walking. I don't worry about him wondering as he has severe neuropathy and uses a walker or wheelchair. I hope I am able to care for him until the end. He is 82 and I am 79 but I am in great health. This an unfortunate disease. I would like to hear what things he accepts to keep his brain active.
Have a great day.

Our trip to Mayo Neurology in Rochester went well. Every employee was kind and knowledgeable. My husband’s first day was filled with appointments, starting with a brain MRI. We met with the neurologist that afternoon. The doctor was fantastic and asked my husband a series of non threatening questions and then eased into a series of cognitive test questions. It was decided at that point that three of the tests scheduled for the next day were unnecessary. The staff rearranged my husband’s schedule and we were able to head home a day early.
During our first visit with the neurologist, we were told that my husband is in the moderate stage of Alzheimer’s and cannot drive a car or boat. The doctor also discussed getting our estate in order. During that visit, husband was shutting down after a long day. I messaged the doctor that evening to fill the gaps regarding my husband’s condition and behavioral changes. The doctor answered first thing in the morning and thanked me for reaching out. On day two my husband had a glucose pet scan. That scan determined that he is in the moderate stage of Alzheimer’s with Anosognosia. Before we left for home, we met with a social worker, she was fantastic and gave us some coping skills, diet ideas and ideas to keep our minds sharp. The social worker told my husband to tell family and friends. She wanted him to get used to saying the word Alzheimer’s.
Our second visit with the neurologist was via video chat. He prescribed Namenda and took my husband off his supplement because it contains gilgbo.
We were told that my husband will not have any more brain scans or tests for dementia. I found our experience at Mayo Clinic fantastic and that my husband had a thorough examination regarding his condition.
The Anosognosia diagnosis makes sense. My husband keeps saying that he felt well going to Mayo and feels great now. He has no idea of what he cannot do. He does not try to do the things he used and does not understand that it is not normal for me to do his tasks. Surprisingly my husband asked to surrender his driver’s license and did so without a fight. There have been a few times he mentioned that he lost his independence and is frustrated he cannot come and go like he used to. I am sure as time goes on, we will get in a routine until his condition starts getting worse(again).
This stage has been much more pleasant than the last. I am going to enjoy each moment as I know that things will not always be smooth.
My husband is taking 10mg Aricept and 10mg Namenda daily. My husband is reacting to the Namenda well and has more energy. I am afraid to add the additional 5 mg to his morning dose for fear that his energy level will turn manic, so I am going to wait another week.
I have been pretty emotional since we got back. I am relieved that we finally have a diagnosis and sad for what our future looks like.

may i ask, how did you get diagnosed?— my husband has been tested but he was not bad enough then to receive a formal diagnosis, although they did talk a little about medicines at that time…the last testing was two years ago and he has had definite decline since then…took him to his primary care doc to arrange for testing again— but he asked my husband (because of hippa law) if he wanted testing and my husband of course said no, because he thinks (at times) that he is fine. i dont know what to do now - we have no help and no support, and my husband definitely has dementia— just doesnt have a diagnosis— all of our kids and grandkids know it too. I do not know where to turn. Ideas?

@rebeccagrover This is a little sneaky but if your husband has a patient portal you can tell your husband his doctor strongly recommends the testing, then you can use the portal to sign into his account and communicate as though you are him and indicate you want further testing and set up an appointment... what's the saying about asking for forgiveness???

@japlok
Thank you for your comments…i did use his patient portal and request the testing thru there…and the doctor said both of us would go to jail for communiating like that per hippa.
So, i can’t do that. Im his caregiver and his healthcare agent and i am being shut out. Craziness right?

@rebeccagrover His doctor is interpreting the HIPPA law incorrectly.

HIPAA regulates providers, not family members.
The issue is not HIPAA — it’s the clinic’s portal policy.
Every patient portal has a “Terms of Use” that says something like:
“The patient is responsible for keeping their login private.”
This is a clinic rule, not a federal law.

You are very unlikely to go to jail for using your husband’s patient portal to request a test if he gave you permission — but it can technically violate privacy laws or the clinic’s policies, and it can create problems if the clinic believes you were acting without his consent.

This is about policy and authorization, not criminal intent. In practice, criminal charges are extremely rare.

You’d typically see criminal cases only when:
- Someone accesses a portal to commit fraud
- Someone impersonates a patient to obtain controlled substances
- Someone accesses records maliciously

Requesting a test for your spouse, with no intent to deceive or harm, is not the kind of situation prosecutors pursue.

To avoid any future issues:

Have your husband log in and add you as an authorized proxy (every major system supports this)

Or call the clinic and say:
“My husband wants me to help manage his care. How do I get proxy access?”

Clinics deal with this constantly — spouses, adult children, caregivers — and they’ll set it up without judgment.

Our trip to Mayo Neurology in Rochester went well. Every employee was kind and knowledgeable. My husband’s first day was filled with appointments, starting with a brain MRI. We met with the neurologist that afternoon. The doctor was fantastic and asked my husband a series of non threatening questions and then eased into a series of cognitive test questions. It was decided at that point that three of the tests scheduled for the next day were unnecessary. The staff rearranged my husband’s schedule and we were able to head home a day early.
During our first visit with the neurologist, we were told that my husband is in the moderate stage of Alzheimer’s and cannot drive a car or boat. The doctor also discussed getting our estate in order. During that visit, husband was shutting down after a long day. I messaged the doctor that evening to fill the gaps regarding my husband’s condition and behavioral changes. The doctor answered first thing in the morning and thanked me for reaching out. On day two my husband had a glucose pet scan. That scan determined that he is in the moderate stage of Alzheimer’s with Anosognosia. Before we left for home, we met with a social worker, she was fantastic and gave us some coping skills, diet ideas and ideas to keep our minds sharp. The social worker told my husband to tell family and friends. She wanted him to get used to saying the word Alzheimer’s.
Our second visit with the neurologist was via video chat. He prescribed Namenda and took my husband off his supplement because it contains gilgbo.
We were told that my husband will not have any more brain scans or tests for dementia. I found our experience at Mayo Clinic fantastic and that my husband had a thorough examination regarding his condition.
The Anosognosia diagnosis makes sense. My husband keeps saying that he felt well going to Mayo and feels great now. He has no idea of what he cannot do. He does not try to do the things he used and does not understand that it is not normal for me to do his tasks. Surprisingly my husband asked to surrender his driver’s license and did so without a fight. There have been a few times he mentioned that he lost his independence and is frustrated he cannot come and go like he used to. I am sure as time goes on, we will get in a routine until his condition starts getting worse(again).
This stage has been much more pleasant than the last. I am going to enjoy each moment as I know that things will not always be smooth.
My husband is taking 10mg Aricept and 10mg Namenda daily. My husband is reacting to the Namenda well and has more energy. I am afraid to add the additional 5 mg to his morning dose for fear that his energy level will turn manic, so I am going to wait another week.
I have been pretty emotional since we got back. I am relieved that we finally have a diagnosis and sad for what our future looks like.

@upgirl2013, your visit at Mayo Clinic sounds like it was very thorough and caring for both you and your husband.

On the topic of anosognosia, you and others managing denial may be interested in this expert blog post
- Anosognosia and Other Clinical Terms Defined https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/anosagnosia-and-other-clinical-terms-defined/

And these related discussions in the Caregivers: Dementia support group:
- Do most dementia patients suffer from denial? (Anosognosia) https://connect.mayoclinic.org/discussion/denial-about-dementia/
- LBD - Is it denial or anosognosia? https://connect.mayoclinic.org/discussion/lbd-is-it-denial-or-anosognosia/