Mental Illness dementia or something else

Anonymousjpl123

Hi everyone,

I am still coping with my moms memory issues and diagnosis. I am truly baffled: her issues are so obvious to me, my one other family member who knows her, and the people in her AL. But when I bring her to the doctor, desperate to get her some kind of care of evaluation for her memory issues, they either minimize it or think she is relatively sharp.

My family and I, on the other hand, watch severe deterioration (thinking her grandddaughter is two people, one older and one younger, forgetting who she is, sometimes totally disoriented about where she is, etc.)

Part of the problem is that she is very smart. She can appear sophisticated. She can fool people.

Another problem is she has a lot of other health issues that are pretty serious (diabtetes, hypertension), so those tend to be doctors’ focus.

i did finally get her to agree to a follow up with the neurologist we saw once, last year, so that appt is in July.

But if 2 different doctors have not found her to be worrisomely disoriented, should I just let her memory issues get worse? truly, her bank, her condo board, adult protective services all saw how she was living so I know she has issues. But at the doctor, she just doesn’t seem to appear very disoriented, or at least not enough that they are concerned about Alzheimer’s or dementia.

I am at a loss, just wondering if anyone has advice. Thank you all for your patience. I know I am not crazy, my mom is a difficult person and I am just trying to do right by her.

Ed1937

I definitely have a comment, and I hope it helps. Write a detailed note to give to her neurologist before he/she sees your mother. Tell him of all the people, listed above, who noticed the problems. This note can be given to the person handling sign ins. Make sure you tell them that the doctor needs to read the note before the visit. Doctors welcome this type of communication from family members, so detail everything you notice, and how often these things occur. With the information you give them, their job of coming to a diagnosis becomes much easier, and that's why they welcome it, and that's why it is so important. Mom does not need to know about the note. These notes work. Many of us have used them.

Denise1847

For two years, I was trying to get our former primary care doctor to take my husband's memory issues seriously and she just kept minimizing them. I changed doctors and he did a mini mental assessment and an MRI and gave us the diagnosis and meds he needed. Dont' give up as you know your mom.

M1

People with a lot of "cognitive reserve" are very good at showtiming-meaning that they can pull out the stops when stimulated, and function at a high level for short periods. That's why your careful notes and even video or recordings are important for the docs to have. You're not crazy.

storycrafter

Unfortunately this is a frequent occurence: the lack of physician and staff awareness about dementia; their reluctance to "name it," and the ability of an ill LO to rise temporarily to the challenge of appearing okay (my dh with FTD has a lot of cognitive reserve and does this frequently, afterward collapsing/sleeping for a couple of days to recover from his exhaustion). There are also many types of dementias and they don't all present early on with memory issues like Alzheimer Disease. We often know more about dementia/mental illness than those employed in the medical system.

For my husband and I, after years of no diagnosis for him except MCI, depression, and anxiety, the doctors finally began paying attention and taking us seriously when I provided written, dated, concise notes about my husband's issues. Then we began to get the support needed - medicines to help manage until we could see the specialists, referral to a psychiatrist for meds management, to a neuropsychologist, and a neurologist.

You've gotten good advice above. I hope you soon find the support you and your loved one needs.

Elshack

I too suggest you write a concise note to the neurologist and have the person at the desk be sure to give it to the Dr before you and your mother see him. Don't write long paragraphs. I find if you list bullet points of the most serious behaviors that would be most helpful.

Iris L.

Diabetes and heart disease/hypertension can contribute to dementia.

Pat6177

Maybe take some videos on your phone showing her behaviors to show the doc.

harshedbuzz

@Anonymousjpl123

My dad sounds a lot like your mom. He was not an easy human being. When I shared dad's diagnosis with my mechanic who knew dad, he let out a long, low whistle and said "Dad Buzz with dementia-- that has got to be something". I can't speak to your mom, but I know my dad had some mental health issues which did flavor his presentation of dementia.

Dad, too, had a fair amount of cognitive reserve and could showtime like there was a paycheck in it. Often, he conflated his answers during appointments in such a way that what he said sounded plausible but was absolute fiction. For that reason, I sat behind him at all appointments in order to silently communicate with the doctor to confirm or contradict. I also communicated with the doctor via the patient portal or email. Dad could be pretty aggressive, so I shared video clips of him threatening me with his geripsych because dad was always on his best behavior during appointments.

This "best behavior" is called showtiming. Dad was a master. His speech remained remarkably intact and when he struggled with word-finding he typically used a higher-brow alternative. I once walked in on him fighting with the DON when in rehab demanding to know "By whose authority am I incarcerated in this place?" At his geripsych's office he was all charmed peppering his conversation with punchlines to Yiddish jokes. (FTR, dad was a lapsed Irish-Catholic)

Another thing that happened was that dad tended to do pretty well on the quick screening tools like MMSE and MoCA. About 6-9 months before he died, he was given a MoCA by the geripsych. He did surprisingly well-- the doc said fairly close to be expected for his age/education-- maybe MCI-ish. He bragged about testing "off the charts" all the way down to the lobby and then toddled off an got into a car being driven by a little old lady when my back was turned.

But if 2 different doctors have not found her to be worrisomely disoriented, should I just let her memory issues get worse? 

Assuming the PCP has ruled out other treatable potential causes that mimic dementia (sometimes vitamin or hormone deficiencies have similar symptoms), there isn't much they can offer. Dementia progresses. There are meds that can improve symptoms for a time, but the disease will continue to progress even if she can tolerate them. If she has challenging behaviors, a geri psych could be helpful in addressing those.

HB

Davegrant

Thanks, Anonymousjp123 for your post it is exactly my situation with my DW. Last night I took my DW to our granddaughter's high school concert/play and my DW was making comments that were negative and I was hoping others could not hear her. Comments like "This is the same as last year", This is " terrible, Now they all will try it", suggesting that the play will encourage fighting. DW also counted the children on stage for some unknown reason. At the first intermission, a lady came over and sat with us and said, "I know she has Alzheimer's, but try holding her hand. I told the lady that I was thinking about leaving since it was the intermission, but she said "no, I am glad you brought her". My DIL and I both held my DW's hand(s) and it did help a little but when the play ended, I took an inside sigh of great relief.

My "DW" can put on a show for the doctor or company that even I can't believe. Her chit-chat is exceptional, and it always was. The other side of the coin is like the above situation. It when her and I are alone that the mask comes off and the disease appears. Another example is the other night I was on a zoom meeting and DW was wanting attention, so I told her to call her best friend "Sally". I wrote the number on a piece of paper and gave it to her. She came back in about ten minutes and said that she couldn't reach Sally. She handed me the tv remote and asked me to make the call. She had thought the remote was a cell phone.

I decided that the doctor is all about the physical health and my DW is doing great in the department, but we are not dealing with the mental situation which is in front of us. I plan to follow the advice above and start writing this up like I am doing now. The hospital that we use has a message board and I was sending messages to the doctor, who told me how much she appreciated them. But then the hospital administration changed a policy on the message board that only allowed messages related to appointments. So, I will go back to sending postal letters to the doctor as I was previously doing. I also plan to follow up on "compassion fatigue" that was on this board yesterday.

Thanks again,

Dave

Iris L.

New membrs: Read about a week's worth of threads to get yourself up to speed. Then you will better be able to focus your concerns to your doctors and to begin to make your plans.

Iris

Anonymousjpl123

Wow I am so long overdue for a response and all I can say is…. Thank you. Thank you for letting me know I am not crazy. Thank you for telling me you are going through what I’m going through. Thank you for posting here and letting me know that my situation is not totally uncommon.

also, I have an update! It turns out patience is the key. I took my mom to an appt with her endocrinologist - who she adores - who she has seen every year for 15 years.

i had of course never gone in with her before (I only took her once last year). This time, I went in, and she finally met me. She clearly cares and knows about my mom. She said she looks 100 times better since moving in AL. Thang god.

I also had a chance to hold up notes from the MyChart from the last Dr. Visit - about my memory concerns, her not going for neurology visit, etc. she pulled me aside and let me know that she had real concerns about my moms memory issues - she told me last year she had real concerns about my moms memory and cognition, but didn’t have my contact info or anything.

She told me she is happy to collaborate with the other doctors and is going to call my moms new primary. At the same time, new primary messaged me asking if we have the neurologist appt follow up (we do, in July). This endocrinologist my mom rEALLY trusts - when she brought up neurology my mom was the usual resistant, but she said “you know, you do such a good job of staying on top of your health, as you get older memory is just a part of this. It’s really good and based on your records I really like these doctors.”

in short, everyone knows. They are working together. My mother is getting real care.

i am beyond relieved.

Jeanne C.

I'm so glad for you and your mom. Having her medical team working together is so beneficial.

Ed1937

That's great! It's always good to see posts where things are working as well or better than expected. I'm glad she has a true medical team now.

M1

That’s definitely the sign of an excellent doc, I’m glad for you.

Anonymousjpl123

@harshedbuzz “He was not an easy human being. When I shared dad's diagnosis with my mechanic who knew dad, he let out a long, low whistle and said "Dad Buzz with dementia-- that has got to be something". I can't speak to your mom, but I know my dad had some mental health issues which did flavor his presentation of dementia.” 

This. Exactly.

Anonymousjpl123

It’s funny how we see so much in our LO/spouse/parent (also sorry - just realized this is the spouse section!) and when dementia hits it is a whole other ballgame.

Truly.

You care for someone and this change comes out of nowhere, and whether it is quick or slow it is terrifying because you know they are totally unable to care for themselves. And you’re it.

Anonymousjpl123

The one other thing I hope this post conveys: don’t give up. It wasn’t until I literally was near tears in the doctors office that anything got moving. I wish it had t come to that, and this process has been exhausting, but it is worth it. even when the doctors seem like they are not listening it is not in vain.

Our health care system makes this all so difficult. I am beyond relieved my mom had this one random endocrinologist she kept.

Also: the cognitive reserve/show timing is REAL. Anyone who spends more than 2 hours with my mom sees her issues. The AL where she lives (god bless them) is 90% filled with people with memory issues because they also have memory care there.

When mom couldn’t reach me for 3 hours the day before the appt (I was at work), she panicked saying no one was taking her. I had confirmed with her 4 times that morning. She called 3 friends to call me, and tried to have front desk call an Uber. My voice mail was full and they emailed and texted me. Even with some humor. “Your mom is adamantly requesting an Uber to an appt 2 hours away tomorrow. Since xxxx is not an accurate historian, we are unable to assist her with these requests without your approval. Please advise.” They know. It’s a relief.

on a sad note, her memory continues to decline quickly and I feel really sad for her.

Ed1937

 (also sorry - just realized this is the spouse section!) It's all good. Anyone can post here, and we have people posting who are caregivers to their parents. I think for some, this might be the only forum they post on.