Can’t get diagnosis. I think i am going crazy.

tryingtolearn

About 3 years ago i noticed difference in my LO’s memory and cognitive 

Discussed with her and PCP and of course it was disregarded

Just before Covid i convinced the PCP and LO that there might be an issue 

She had MRI which showed normal brain loss and neurologist visit which was a disaster because she charmed him and i swear he was assisting her with answers 

Fast forward a year and a half and her condition has downgraded that she is doing almost no

daily activities,, has no concept of date, month or season, is unable to mange any finances, 

pulls away from any friends and family because when they talk she doesn’t understand them,

see people in her bedroom at night and see things outside that aren’t there.

I trick her into the car and get het to a new neurologist 

She performs wonderfully in his office, charms him and gets 24 out of 30 on cognitive 

She has a normal EEG.     He diagnosis with mild dementia 

I must be the one going crazy.  Last month i went to a neurologist and a therapist because i am beginning to think i am making this up

 How can she say the bizarre things to me and not function and pass the tests????

Let me end by saying this woman was the most beautiful spirit and most giving person i ever knew and now she talks about hating peoples and torching the house 

Cynbar

If you can, try to get her on video when she is acting strangely, hallucinating, talking to people who aren't there. My DH was also very good at "showboating" in the doctors' offices, and I'm not sure he fully believed what I was telling him. A couple of videos put an end to that.

Beachfan

I think you did get a diagnosis from the new neurologist- - “mild dementia”.  11 years ago, my DH was diagnosed MCI (mild cognitive impairment).  Exactly the same, only different, as my grandkids say.  He was prescribed Aricept and Namenda.  He is presently solid stage 6, meds discontinued and progressing slowly.  

The most important thing you can do is get to a CELA (certified elder law attorney) while your LO is still able to understand (and agree to) certain things.  Get your legal and personal affairs in order; others will chime in with great advice as well.  Good luck and keep checking in for advice and encouragement.  

tryingtolearn

good point about the videos 

not sure if why i didn’t do that already 

tryingtolearn

thank you.  i dis reach out for legal and have an appt set up

Ed1937

Just one question. Was she tested so that all other conditions that might mimic dementia could be ruled out? There are many conditions that can cause symptoms like dementia, and when treated, the symptoms could possibly disappear. If she has not been tested for those things, she needs to have it done.

Crushed

Ed1937 wrote:

Just one question. Was she tested so that all other conditions that might mimic dementia could be ruled out? There are many conditions that can cause symptoms like dementia, and when treated, the symptoms could possibly disappear. If she has not been tested for those things, she needs to have it done.

 

DEMENTIA is itself a symptom but perhaps you meant "dementia-like Symptoms" (e.g. Carbon monoxide poisoning produces "dementia-like symptoms"

Otherwise I agree

jfkoc

Do read up on the diagnosis of AD. Make certain every test was completed. The diagnosis protocol rules out possible causes or what you are seeing.

This is the time to get financial/ legal and medical documents in place.

What you can do yourself right now s to read up on caregiving. The information will assist you no matter what the cause of the dementia is.

Another thing would be to check her hearing with a Dr not just an audiologist.

Memphisdee

My DH did neuropsychological testing in spring. The neurologist had his nurse or np call me on the phone and said it was PROBABLY Alz.  He has had numerous tests before this including MRI that showed aging shrinkage.  Some days he’s good, other days he’s foggy. Still exercises and drives . Don’t know how long that will last.  Short term not good.  On Namenda and Aricept. Hang in there. Hard to get a diagnosis!

Paris20

Tryingtolearn, you are NOT going crazy. For several years, while it was quite clear to me that my husband was declining cognitively, he could sound perfectly fine in brief conversations with family and friends. It got to the point where I feared my friends thought I was exaggerating DH’s condition. His best friend, during the first couple of years after DH was diagnosed with Alzheimer’s, thought my husband was fine, just a little forgetful, because their phone conversations were fine. Those talks, however, consisted of very brief phrases, questions with short answers, how’s the family and how are your favorite sports teams doing basically covered the entirety of their conversations. Now those friends and family hear the repetition, the same questions being asked over and over again. Sadly, it’s likely that DW’s deception will soon be uncovered.

Quilting brings calm

==

 now she talks about hating peoples and torching the house 

==

This right here…. Get this on video then take her to an ER of a large hospital that has a psych unit or psych residents.  Report her as a danger to others… specifically you and your neighbors. Show them the video.  This is the crisis you need to get her evaluated. 

You may think I am exaggerating, please find the threads in this forum from Lady Texan. Her husband poured gasoline on himself. 

I got my Mom treatment for urosepsis by telling them about her opening the truck door as we were at speed on the interstate.  You are in danger  

Ed1937

Crushed wrote:

Ed1937 wrote:

Just one question. Was she tested so that all other conditions that might mimic dementia could be ruled out? There are many conditions that can cause symptoms like dementia, and when treated, the symptoms could possibly disappear. If she has not been tested for those things, she needs to have it done.

 

DEMENTIA is itself a symptom but perhaps you meant "dementia-like Symptoms" (e.g. Carbon monoxide poisoning produces "dementia-like symptoms"

Otherwise I agree

Actually, what I wrote is exactly what I meant. Although I do know that dementia is not technically a disease, it is a disease to me (and likely to many others here). And I don't think anyone reading my post wondered what I was talking about. It doesn't bother me to be "wrong". Been there many times.

storycrafter

It's a difficult diagnosis most doctors are understandably reluctant to make. Unfortunately, it can take much time before one gets a diagnosis. This makes it very stressful for the caregiver. 

Your experience is classic and you're not alone. I/we went through several years of indescribable misery before finally getting a proper diagnosis in 2015. Though our lives have been turned upside-down by the cognitive changes, my husband still does fairly well on the simple office tests, and for many years his MRI's showed nothing unusual. It's natural for PWD to rise to an occasion and manage to perform or appear "normal" for a short while. It does make the most sane person begin to feel a bit crazy.

Here's a strategy that was a game changer for us: Start keeping a dated log of the behavior changes/issues you observe. Discretely give it to the doctor ahead of appointments (take an extra copy with you in case it turns out the doctor hasn't read it ahead of time). A written, dated record gives doctors something concrete, and that way you can also be respectful of your loved one's need for dignity during the appointment.

It was only when I gave them my written log, that doctors began listening and finally taking my observations seriously. It's worth writing even a general summary if you can't remember dates. For example, when we saw our GP, I went back to what I could recall in recent years/months/days, chose a few of the most obvious changes in my husband, briefly wrote how he behaved before, then how he behaves now, when it started. I gave specific examples as concisely as possible/just the facts.

Every person is different. This is how it went for us. After reading my written list, our GP/PCP immediately referred us to a psychiatrist for medication (which helped significantly with initial coping while waiting for more testing to be completed). The psychiatrist referred us to a neuropsychologist for testing. The neuropsych then referred us to a neurologist who made the final decisions on all the meds. Our GP now manages the yearly prescriptions for us and we rarely see the neurologist.

Hang in there. Look up your local Alzheimer's Association support group and go to a meeting if possible; they're a fount of information and help. Seek advice and support from your local Council on Aging to find resources in your area. Keep at it, keep seeking the help you need until you get it. The right support and correct meds can make a huge difference in quality of life and coping.

harshedbuzz

tryingtolearn wrote:

About 3 years ago i noticed difference in my LO’s memory and cognitive 

Discussed with her and PCP and of course it was disregarded

Just before Covid i convinced the PCP and LO that there might be an issue 

She had MRI which showed normal brain loss and neurologist visit which was a disaster because she charmed him and i swear he was assisting her with answers 

It sounds like the neurologist did an in-office screening MMSE.

Sometimes when these are given a person might not recall an answer- like "remember 3 objects"- and the clinician will prompt them to see if a hint aids recall. This isn't helping in the normal sense as much as seeing how her mind works and whether she can respond to a prompt. 

I watched my dad do this with his geriatric psychiatrist- he aced the serial subtraction, reading and orientation questions, but could recall one of the objects- "a rose". The doc hinted "it's a flower" and dad answered "lily". The exchange showed that while dad could pull a flower name from his lexicon- and one used as a lady's name, to boot- he could not recall the one he saw a few moments prior. Bonus points- dad's name was Rose so I would have expected him to recall it. 

Fast forward a year and a half and her condition has downgraded that she is doing almost no

daily activities,, has no concept of date, month or season, is unable to mange any finances, 

pulls away from any friends and family because when they talk she doesn’t understand them,

see people in her bedroom at night and see things outside that aren’t there.

I trick her into the car and get het to a new neurologist 

She performs wonderfully in his office, charms him and gets 24 out of 30 on cognitive 

She has a normal EEG.     He diagnosis with mild dementia 

That's your working diagnosis. That said, as the person living with her 24/7, you are the expert about where she might be in terms of disease progression. 

Dad tended to score pretty well on the quick and dirty screenings. His last MoCA he scored about as expected for his age and education level which surprised us. Dad carried on about how well he did "off the charts" all the way down to the valet stand where he toddled over and got into the random car with some little old lady who was waiting to drop off.

Getting to a diagnosis can be a challenge when you have a person who can pull themselves together for a short period of time when they feel they need to. "Showtiming" can cause real frustration when the PWD does this around their medical team or family members who come away thinking she's more capable than she is. I did share videos of dad being aggressive via email in order to support my mom's reporting as I got the sense the doc didn't believe things were as hard at home as they were. It changed everything.

Dad's should have earned a Tony for his performances with his geipsych. Gone was the aggressive slob we knew- replaced with the life of the party exchanging jokes with his Israeli-born doctor. Dad's Irish-American so the Yiddish was a bit unexpected. 

Another downside to the diagnostic process is that these appointments typically take place just before or after lunch, the very time of day when a PWD is often at their best in terms of orientation and mood. I often think it would be great if neurologists could come to your home in the evening so they could see what you're seeing. Dad was initially diagnosed during a hospitalization and I think the residents checking in with him through the evenings and nights was useful in getting to a diagnosis quickly. 

I must be the one going crazy.  Last month i went to a neurologist and a therapist because i am beginning to think i am making this up

 How can she say the bizarre things to me and not function and pass the tests????

Beats me, but it is the nature of the early and early middle stages. Dementia is about so much more than memory. It impacts things like mood and executive function, too. Sometimes significant deficits in these are noted before memory loss becomes profound. 

Let me end by saying this woman was the most beautiful spirit and most giving person i ever knew and now she talks about hating peoples and torching the house 

It sounds like a geriatric psychiatrist would be an awesome addition to her care team. It would be useful to know which hospital in your area has the geriatric psych ward in case you need to have her transported for these kinds of threats. Medication can be very useful for mood and even the hallucinations she is having. 

French

Nobody believed me at the beginning. For everybody it was a burn out. Note my partner was less than 50 years old at this moment. I began to doubt seriously 3 months after his first sick leave.

 I went with him to his psychiatrist, to explain him he was loosing everything ( the car twice). I was answered it was the effect of the burn out.

My sister even suggested I was stressing him. Indeed with others, everything was always ok. Yes, with the others he wasn’t trying to fix the electricity in the house or other catastrophic idea.

I contacted a neuropsychologist who did very detailed tests and then alerted the family doctor. This one asked uns to see another psychiatrist who directly saw the acalculia.

Then a neurologist at the hospital MRI that showed nothing allowing to conclude, a lumbar puncture and pet scan that clearly conducted to Alzheimer diagnosis.

But yes, what you describes clearly speaks to most of us. We have been through this. Even if you can’t get a diagnosis for the moment, prepare future as if you had one, don’t loose more time.

Poulsbo

Tryingtolearn, one of the reasons you feel as though you may be going crazy is that you live in a crazy world with your LO, and you feel alone. Until I began taking notes and recording DH's crazy, illogical, irrational conversations and actions, I was afraid to tell anyone about my concerns. My DH was like your LO.  In social settings he pretended to listen to friends and family without contributing in a meaningful way to the discussions. 

One day, out of desperation, I messaged my best friend with one of the recordings of a conversation I had with my DH.  Her husband had passed away a few months earlier from Dementia. Eight weeks before her husband's death, my friend's husband, a certified pacifist Vietnam veteran, tried to kill my friend by hitting her over the head with a frying pan, and when that didn't work, he went after her with a lamp.  My friend understood.

Immediately after my friend listened to one of my DH's recorded rants, my friend called me. After she called and candidly talked with me about my DH, I made it my mission to get professional help for my DH no matter how hard it was. Truthfully, I may have been subconsciously in denial.

After a neurologist and a neuropsychologist's diagnosis, my DH was diagnosed with Lewy Body dementia with Parkinson's and Capgras Syndrome. Our son accompanied my DH to the appointments with the neurologist and received a copy of my DH's neuropsychologist's report. Our son knowing that I was not exaggerating or embellishing DH's irrational, stupefying behaviors was critical to my maintaining a little sanity of my own.

The record-keeping and documentation of DH's weird actions were critical in planning, preparing, and living with a person who is now a stranger who has Dementia. A diagnosis may help change your position from being defensive to being proactive.  I wish you and everyone else who is traveling this lonely road of Dementia a little peace and a great deal of understanding.  Living 24/7, 365 days a year with a LO who has dementia requires superhuman effort behalf of the caregiver and compassion for the one whose life and mind are slowly slipping away.