It’s the dreaded … MCI diagnosis

Quilting brings calm

 So today was interesting, sad and aggravating all at the same time. It was the neurologist appointment that my mom has dreaded for weeks.  

When I called to tell her I’d be there shortly, she didn’t want to go. Big surprise. We had the typical  difficulties with transporting the walker, walking to the actual office etc. 

The nurse practitioner was really kind and thorough.  I think we saw her at least 90 minutes.  Discussion, the MMSE test, various physical, vision, etc.  tests, walking, balance, and sensations in her feet since Mom says her feet are burning. 

Ordered blood work and a CT scan. Doctor would like an MRI but doesn’t think Mom can handle doing one. 

And now for the reveal… her score was 23, she has mild cognitive decline and she should  be behaving differently than she is. NP said she is capable of much more than she is actually doing.    She behaves like she’s a late stage 4 with a maturity level of a child.  She behaved like a child in the lab waiting area when we went for the blood work , crying, demanding to go home to the point that the receptionist  moved her up in line.   I have felt trapped  on a daily basis for almost two years now only  to find out she should be capable of living in and enjoying assisted living without a lot of help from me. Definitely shouldn’t be calling me 26 times a day. 

I was so floored and hurt when the test score was read, that I actually  blurted out ’ how can that be’. So the NP went on  to explain that Moms real problem is that she is depressed.  The new medication prescribed last week is what she often prescribed and she told mom it would take 4-6 week to kick in.  She told her to quit isolating in the assisted living apartment and get herself to the activities and out in the hallways.  

I know I  should be thrilled with this diagnosis. But I’m not sure it is not just my mom show timing and if she is this well, my heart hurts that she chose to manipulate me like this… just so I’d be at her beck and call daily. 

dayn2nite2

I think it’s showtime OR the questions and/or instructions they gave her didn’t exhibit her cognitive deficits.

I wish whenever a health care provider utters the words”mild cognitive impairment” a big hand would come out from a wall and slap them.

Emily 123

Hi,

Well, my mom had a 24 about a year ago, a few months after her partner had pneumonia and ended up in a SNF closer to his family, with no interest in her joining him.  She was definitely struggling to sort out what had happened, but denied being depressed to the neuropsych-just felt like she was sad but could deal with it (she was mostly thinking he was dead). 

That should be mildest of the mild, right?  But I'd say she was late 4 then and by January was in early stage 5.  Have not had behavioral issues, but she needed constant cueing to get through the day, hygiene, toileting, repetitively going through her dresser at night, not recognizing me when I was bundled up for the cold.  Just no short term memory, but can showtime like an ace.  Now in the AL since February she's kind of settled in and looks more put together--even showering.  I don't know-this is such a strange disease.  I couldn't believe it either.  

Iris L.

Major depression is part of the differential diagnosis for memory loss.  If there is a question of depression, there should be a four to six week trial of aggressive treatment for depression.  Dementia is a rule out diagnosis and all other possible causes of memory loss should be sought and treated.  

Iris

Stuck in the middle

That sounds like good news to me!  Depression is treatable, far more readily than Alzheimer's.  

If the correct diagnosis is depression, that does not mean your mother consciously manipulated you.  Depression is debilitating and frequently fatal, by suicide.  Depression has cost me some family, and it is as real as any other mental illness, including dementia.  

Please be glad for your mother and continue to help her get well.  This is the happiest news I have heard all day.

ButterflyWings

dayn2nite2: ROFL!!! (rolling on the floor laughing)

dayn2nite2

BW, I just can't help it, I've been down this road, MCI is meaningless when it comes to pinpointing what's wrong.

When I first was introduced to this disease, I took my mother to the doctor at least 3 times (had to threaten her to get these visits done) and each time they insisted it was "depression" and prescribed a mild antidepressant at a low dose.  I kept written notes on the fact that she was unable to get out of her car a couple of times due to not understanding how to operate the locks on the car doors, bills going unpaid while vast amounts of money being sent to various animal charities, just bizarre behavior quite unlike her, and each time my observations were dismissed and the troubles pinned on "depression."  I made sure she had full cardiac testing, imaging, lab work and the whole lot.

It's like a wastebasket diagnosis.  We can see what's happening and report it, but I feel the doctors often don't want to say what is really wrong.

jfkoc

I would hold on tight to the lifesaver you have been handed. Depression is one of the things that can lead to the behavior you have been seeing and thankfully it is treatable.

Quilting brings calm

Oh believe me I am going to tell my mom that she can do things  herself, and I’m going to quit answering the phone and rearranging my day because her ‘whatever’ hurts. Because otherwise MY Heath and marriage will continue to deteriorate. 

But my guess is that she’s going to go continue acting like she is 1 step away from an MC.   This is not the first time we’ve been told MCI, but it’s the first formal time, and it’s from a neurologists office. A year and a half ago I was told it informally  after a much shorter visit by an intake person at a psychologists office.  Yet mom continued to act as if she was stage 4 and progressing,  her PCP has said dementia for over a year.  A ER doctor said dementia and definitely not MCI a year ago.  

So either day2 is right and this diagnosis is bogus and she’s going to continue to act stage 4 …. Or the diagnosis is right and she’s going to continue to act like stage 4 and manipulate me. Or she will straighten up after a few weeks of the generic Remeron. 

Jfhoc - this is only a lifeline if  she actually straightens up.   Depression doesn’t make you act like a child throwing temper tantrums.   But I thank you for your hopefulness on my behalf.  I wish I had some of my own. 

GothicGremlin

Hi there, Quilting.  Could something else be going on with your mom (in addition to the depression)?

I ask because for us, one of the hurdles in the beginning with getting any kind of diagnosis was because of what happened during our initial neurologist appointment. Looking back, my sister was probably somewhere in stage 4, but when she took the mini mental, she failed the whole thing. The neurologist was baffled.  He said people usually fail one part of the test or another part (depending on what's going on with them), but rarely do they fail the whole thing.  I don't remember my sister's actual score, but it was somewhere in the single digits. The score didn't match how she was presenting at that time.

Turns out my sister had been wearing the same pair of contact lenses for way too long - she literally couldn't see.  So anything on the test that required her to visually ID something or to complete a visual task (like connect the dots) was a no go. Her bad lenses skewed the entire test.

We didn't actually get a firm diagnosis until after an MRI and a PET Scan. 

abc123

Dear QBC, whatever it is going on with your mom, I hope the antidepressant meds make a huge difference for the best! I know you have been going thru hell because of her behavior. I don’t know how you do it. I’m hoping for the best for all of you!

day2night! You made me laugh a big belly laugh and I needed it! I also agree!!! 

Iris L.

dayn2nite2 wrote:

BW, I just can't help it, I've been down this road, MCI is meaningless when it comes to pinpointing what's wrong.

 

I disagree.  My diagnosis remains cognitive impairment nos.  The problem is that people including professionals use the term MCI inappropriately.  MCI implies memory loss but still able to perform activities of daily living appropriately.  

When I first was introduced to this disease, I took my mother to the doctor at least 3 times (had to threaten her to get these visits done) and each time they insisted it was "depression" and prescribed a mild antidepressant at a low dose.  

 

As I said above, if there is a question of depression, it should be treated aggressively for four to six weeks.  The dose has to be appropriate.  It appears to me, as a medical professional, that your mom's doctors were unsure or otherwise inexperienced.  They should have referred to a psychiatrist, preferably a geriatric psychiatrist.  If these doctors were actually psychiatrists, then I agree, they did your mom wrong.

In my own own case, I was offered an antidepressant for several weeks with no effect.  Once I began using a small dose of Exelon patch, I noticed improvement within DAYS.

I kept written notes on the fact that she was unable to get out of her car a couple of times due to not understanding how to operate the locks on the car doors, bills going unpaid while vast amounts of money being sent to various animal charities, just bizarre behavior quite unlike her, and each time my observations were dismissed and the troubles pinned on "depression."  I made sure she had full cardiac testing, imaging, lab work and the whole lot.

 

Difficulty with financial matters and computation is a major sign of inability with activities of daily living.  I used to do my own taxes, until all of a sudden, I couldn't.  All of a sudden, I could no longer do math in my head.  I don't know why this isn't more known.  

 

It's like a wastebasket diagnosis.  

 

This really is a derogatory term.  It means someone does not want to make the effort to delve further into the problem.  When I told one of my doctors I had fibromyalgia, she declared "that's a wastebasket diagnosis!"  I felt kicked in the gut! She completely invalidated me.  She had nothing to say about the great pain I was in.  I had to leave her, despite her treating my hypertension well.

IMO, a diagnosis of MCI should indicate that a degree of follow-up in needed.  Some will remain about the same indefinitely, some will revert to normal/baseline, and some will progress to dementia.  You need some time to see if there will be progression.  

 

We can see what's happening and report it, but I feel the doctors often don't want to say what is really wrong.

I totally agree.  IMO, most PCPs don't really know how to do a thorough evaluation for suspected dementia nor do they understand what MCI means.  There is a patient now with low vitamin B12 being treated with a pill, to be reevaluated in three months.  I don't think that's sufficient. 

That's why these message boards are so important so members can get more input and learn what questions to ask.  

At the same time, I also believe many people don't want to listen rationally.  Doctors know that people will freak out if they hear the word Alzheimer's, and they don't want that drama.  This is my personal opinion.  Doctors nowadays do not have the personal relationship with their patients as in former times.  

It's very upsetting and I have gone through all of that myself.  My first years on these boards were spent complaining about maltreatment from the many doctors that I had consulted about my severe memory loss.  I call it severe because it was great enough to cause me to lose my medical career.  Also my marriage.  One doctor said I was malingering, in other words out and out lying.  Another declared that I didn't want to get well.  That's another way of saying malingering.  Yet I am here after many years, still with memory loss.  The problem is huge and I don't see it getting better.

Iris

Quilting brings calm

Thank you abc… but I feel your situation is more hellish than mine.  Your mom is much further along. 

I had almost 48 hours of peace,  today is ( so far) a 10 phone call and 4 voice mail day. I’ve answered 3.  One because mom had put me on  mute in call 1 by accident(again) so I hung up. So I answered the 2nd call from her then. 

This mornings call was because she woke up from her morning nap and dad wasn’t home.  So I was a) supposed to know where he was and b) entertain her.  I just kept repeating go do the activities etc. 

This afternoons’ calls - well, my dad caused  those.  He leaves their patio door open all day long for the dog, and therefore flies get in. So he bought a can of indoor/outdoor Raid and Mom thought he was going to use it like air freshener.  So she called me convinced he was going to poison them. He got mad when I suggested that he put all the food etc away, and maybe just spray it around the edge of the patio door. The sad part- he probably  did plan on using it like air freshener.

He got mad and left during the first voice mail from her, so I don’t think the Raid was actually used yet today. So the  7 missed calls and the 4 voicemails were mom worried about it. I sent her a text telling her to go outside. 

The neuro NPs’ office called.  Blood work normal, including B12.  But that is a low normal, so she ordered  B12 vitamins. 

My husband and I have been married 31 years today.  Red Lobster for lunch.  He fell asleep waiting for his food because he’s been trimming trees the last couple days.  Yes, I got a photo! 

Marta

A diagnosis of dementia requires the full neuropsych testing protocol. 

Has your Mom had that?  An MMSE cannot diagnose MCI vs dementia. 

Quilting brings calm

Marta.  The NP spent an hour and a half with her. The MMSE was only a small part of that.  She had access to moms medical records from her PCP.  She’s also going to review existing CTs and  MRIs done in 2019 and  has ordered a new CT. 

This was at the SIU Neuroscience department affiliated with our local hospital 

Marta

Neuropsych testing is done by a psychologist. Without that, one cannot give a definitive diagnosis of MCI vs dementia.

Icymi

My first time here…you’re situation resonated with me.

My husband has early Alzheimer’s and he has benefited greatly from his anti anxiety med, Setraline.  He has a tendency to be childish, however the Sertraline has helped a lot.

Quilting brings calm

Icymi

She was on generic Prozac several years ago, but she asked to be removed from that last year, She went on Xanax a couple months later and then Trazadone was added.  Last week Trazadone was replaced by Remeron.   The Neuro NP said that was a good antidepressant. It’s a different class than Sertraline but serves the same function. It will take a few weeks to build up in her system.  

So the anxiety and depression isn’t solely due to the memory issues.  She has always been high strung.  But the memory issues, urosepsis, the emergency move back to our state, the move to assisted living and then the Covid restrictions haven’t helped in the last two years either. We tried to get her evaluated at a psychologists office in early 2020 but she  refused to go back after that first short visit. Amazingly she remembers that / walking into the office in one door and walking out thru another.  They do that for privacy reasons of course. 

Marta

Without that neuropsychological evaluation, any assumptions about how your mom “should “ be behaving, are just that:  assumptions.

M1

I agree with Marta QBC. To say she "is capable of much more" raises your expectations in ways that may just set you both up for more frustration. My experience has been that more often than not it's can't, not won't, when it comes to expected behaviors.

Quilting brings calm

After today’s calls. I’m thinking that Mom does well on these types of tests, and also showtimes.  It’s hard to fathom that depression would make her behave in some of the ways she does.  I can understand  that depression can make memory loss and confusion worse.  But the tantrums, agitation, and panic over dad not being in the room… that doesn’t sound like depression to me. So I guess I’m going to have to go back to thinking that she does have dementia.  When we go back to the NP in November, I will ask some more questions.  This visit was labeled as the memory clinic consultation visit.  So it’s possible more tests will occur. 

I’m still backpedaling on visits and calls for a while though.  She’s safe at the AL and they have assured me they will call if they need me. 

M1- this rollercoaster ride of symptoms, diagnoses, expectations is very hard…. But it can’t be as hard as the lives of you caregivers at the later stages.

Jane Smith

QBC, your story resonates with me in so many ways. I am SO sorry.

I couldn’t get any of my mother’s doctors to tell me what the heck was going on in the early stages, either. I knew something was wrong, but not what. The PCP said “MCI” but it took me pushing to finally get a referral for the full Neuropsych/geriatric psychiatrist work up, which of course was a waiting list of eight months.  She ended up having a crisis and going for a GeriPsych inpatient stay where she finally got fully evaluated and diagnosed. 

Looking back, she was showing early signs of dementia maybe as many as 20+ years ago, definitely 15 years ago, but it wasn’t until six and a half years ago she got her diagnosis. The three to five years (I honestly can’t remember right now) when she needed a facility or live in care, but did not have them, were unsafe and awful and horrifying for her, with the worst possible imaginable quality of life. It was no picnic for me either but she was suffering and it was terrible. She had a history of depression and probably anxiety, but the dementia kicked it into high gear. 

Without the amazing neurologist at her facility, she would have continued to suffer.  He worked tirelessly for the past six and a half years to get her meds straightened out and to continually reevaluate and readjust as needed.  Truly a lifesaver.  I hope the right doctor/nurse/whoever is out there for you as well. And I hope you can get the right medical care providers, care situation, medications, support, routines, and whatever else your mom needs, to make this better for everyone. I am so sorry.  This is a terrible, awful, hateful, destructive disease for too many people.