Just wondering(4)

Ed1937

We've had some talk here about what information people get from the doctor. My wife's neurologist did not even give the diagnosis. He had another doctor do it. And that was pretty much the end of the conversation except "Do you want medication that might help with memory?" Nobody told us this was a terminal illness. In our case that was just as well because my wife did not hear the diagnosis, but I did, and I knew what it meant. Has anyone been told by the doctor that it was terminal? I'm guessing the answer is "no" because they don't want to give such bad news. What did your doctor say?

loveskitties

Hi Ed,

Due to covid I have been unable to attend the actual dr. appointments (only one person with patient) however I do get updates from Mother about what was said.

Because of my Father's age (95) he is not viewed by the dr. in the same way as those who begin the dementia journey at a younger age.  I guess dr. expected cognitive decline as inevitable with advanced age.

I am certain that they were never told the disease was terminal.  I wonder if they avoid using the term since the general population sees "terminal" in terms of months not years.

While the dr. will address any questions my Mother has, it is usually a meet and greet with a review of new symptoms with possible medication additions, deletions or dose changes.

I can't imagine being a doctor for those with dementia...you have no concrete answers, you can't predict how the disease will progress except in general terms and you have nothing in your pocket which can extend their time here on earth.

I do think that they should recommend "caregiver training" from some qualified professional regarding how to handle the wide variety of symptoms they may encounter.  At least then would not feel so uninformed or unprepared.

This site has been a real eye-opener for me and as a result I have been able to pass along helpful things to my mother.

All who post here with their experiences are great...not only in sharing what they find works, but also with the care they show others who are on this journey.

Thank you all.

dayn2nite2

In neither instance was there a talk with us about an official diagnosis or the progression.

The first was my mother.  We went to her PCP and to 2 different neurologists.  The only way I knew what she had was once when we were checking out at the PCP I saw the ICD-9 code on the sheet.  I looked it up when I got home and it was for dementia, probable Alzheimer's type.

The second was my partner.  I already knew what it was, went to neurologist for confirmation and again, no mention of dementia, nothing.  Just vague "memory" talk (which does not in any way describe the pervasive degeneration of the brain and all the possible problems).  They make it sound like someone who loses their wallet or keys every once in a while, not someone who will sit in a car for 4 hours until someone finds them because they can't figure out how to get out of the car.

So in 15 years, there has been no improvement in how the news is delivered or even whether it's delivered at all.  You're left to guess at a diagnosis, guest at how to deal with the issues, given no resources at all.  This last experience is in a world-class neuroscience center and I felt no different or better there than at the PCP office 15 years ago.  Went one time and wouldn't go again, I can get the same vague talk and no resources 2 miles away.

John1965

Initial diagnosis was MCI from a neuropsychologist. Not a lot of information was given, but there was a referral to a neurologist for further testing. We felt hopeful because the "M" in MCI is "mild." It is a poorly named condition. We learned online that MCI is often a precursor to AD.

The neurologist was in his 80s and has been board certified for more than 40 years. After the lumbar puncture and PET scans he met us the day after DW's 50th birthday and said, "our worst fears have been confirmed." I said, "Just to be clear, she has Alzheimer's." With a tear in his eye, he said, "yes." He wrote a letter to Biogen for compassionate use of the new wonder drug that was in the pipeline, Aduhelm. That was 2015. The request was denied. We were encouraged to meet with a team of doctors pursuing Alzheimer's research. I asked the lead neurologist there about life expectancy. He bluntly said, "There's no way to tell. She could die in as soon as 6 years, or 20. She won't see 70." 

We were referred to a neurologist who specializes in AD, she has been wonderful. There's not a lot she can do, but she has been very helpful with helping us meet all of the documentation requirements for disability insurance. She's also been responsive on MyChart regarding any questions or concerns we've had. 

The bottom line is that it's a terminal disease, and other than giving general advice and managing relatively ineffective drugs, there's not much any of them can do. 

Our current neurologist works closely with our local Alzheimer's Association. At our initial visit, I met with a trained counselor and was given advice about finances, future planning, Association opportunities, etc. At each subsequent annual visit, I meet with a social worker while DW undergoes cognitive testing. I think it's a pretty good model. 

DrinaJGB

Way back in 2011- a year after my DH nearly died from a rare viral infection of the brain- he had to be re-admitted to ICU because he was given a drug "off label" by a doctor in a neuro rehab for his anxiety. That cause severe mental deterioration and altered mental status so alarming I had him transported to the ER from that neuro facility on a Sunday morning, when I came onto the unit and found DH rocking back and forth, spitting on the floor, and unable to walk.

  An MRI was done at the hospital after he had been transferred to ICU. It was only then that I was shown the MRI by the ENTIRE TEAM of neurologists---slice by slice they explained the areas damaged by that virus---and explained to me that my DH should NEVER be given strong neurolepitcs due to the damage.In effect--it was yet another assault on his already ravaged brain.

It was the first time I was told he had significant brain damage---a full year later by a different team of doctors at a different hospital. They were so kind and so knowledgeable and took so much time with me to tell me what that deadly virus had done. Besides that --there was one doctor on the team who had actually had to look away after he teared up as the chief neurologist was telling what had happened to my husband's brain. This is a rare occurance, and so many doctors have never seen a case (1 in 1,000,000).

Since then we have gone every year back to a neurologist with pretty much the same rote exam and brief encounters. But this last time he did show concern and ordered another MRI and NP testing session.

  I still have not had any real explanation of what to expect in the future.Aside from that team of stellar professionals in 2011 who took time out of their day to show and precisely explain DH's disease process---we have pretty much been left on our own as to what to expect.

  I now chalk most of this up to the fact that DH is seen as a kind of miraculous case because the odds of him surviving such a rare and deadly brain assault were slim at best. I recall one neurologist exclaiming that his was the worst MRI he had ever seen, and that he was "amazed you are standing here in front of me."

  Besides that, there's pretty much nothing to be done except wait. And so we wait......

LadyTexan

Because DH was younger (55ish) when he was displaying symptoms, the PCP tried to rule out everything else. Dh's symptoms were exacerbated by his alcohol abuse. The first potential dx was Wernecke-Korsakoff syndrome, and then normal pressure hydrocephalus. We wearily traveled the road to diagnosis for a long long time. 

I remember the day we received the diagnosis from the neurologist (February 2019). The PET scan, along with all the other testing, revealed "probable Alzheimer's". I felt so cheated.  After all the testing, the best the doc could indicate was probable Alzheimer's. Now I understand that an Alz dx cannot be completely confirmed until after death.

I am not sure where I learned that Alzheimer's was terminal. I remember being shocked and dumbstruck. I am fairly certain that the doctor did not enlighten me to that fact. But I could be wrong. I clearly remember "probable Alzheimers" maybe I don't recall anything after that. 

The doc who performed the Neuro Psych testing maybe mentioned to me (not DH) it was terminal. He emphasized the importance of getting DH's affairs in order and making decisions before its too late.

Maybe I learned it from reading the 36 Hour Day by Mace & Rabins or Untangling Alzheimers by Tam Cummings. Or maybe I learned it at a presentation I attended by Tam Cummings. Tam is a gem, by the way.

Joe C.

Ed, My DWs first neurology appointment was pretty much a disaster, she did get the MRI & blood work but absolutely refused to return for a follow up appoint and did not speak to me for a months for making her go. I was not in the room during her appointment so I not sure what was said or done but I later learned from others that this particular neurologist was a real jerk.

The second neurologist I took her to was under the fiblet that it was a sleep apnea appointment. The neurologist was aware of the fiblet, her experience with the first neurologist and her resistance to discussing her cognitive decline.When she finished her cognitive assessment she slip a card across the desk to me with the AA hotline number and strongly suggested I reach out to them. This medical practice has an online portal that you can use for various thing including reading doctors appointment notes. I looked up the appointment notes a few days later and confirmed her diagnosis of AD.

jfkoc

We came into this through the Parkinson's door. It was a definite diagnosis. I do not remember much if any conversation about the future. I think I got ost of my help here.

Ed1937

I got just about everything I know about dementia from this site. Add in readings and videos that were suggested here. Little information from other sources.

This is where I found out that it was terminal. It just about knocked me off my feet. That was before we had a diagnosis. I came here because I expected that's what it was. 

Paris20

I strongly suspected what my husband and I would hear from our PCP on the day I brought DH to the doctor. I knew that his grandmother died of Alzheimer’s so I was as prepared as anyone could be in those circumstances. He had been showing vague symptoms for a few months. The PCP gave my DH one of those short cognitive tests. She did say what she suspected but my husband wasn’t listening, a trait that has existed from his teen years.

It took six months until we were able to see a neurologist. He ordered all the usual tests, ruled out everything else, and used the term Mild Cognitive Impairment. He added that 95% of those with the MCI diagnosis wind up with Alzheimer’s. He never used the word “terminal.” I think he assumed I knew that and in the long run it wouldn’t matter to DH. Most of all, I think the doctor felt awkward uttering that word. I made an appointment with an elder attorney and we brought everything up-to-date based on the diagnosis, which my husband has never been able to  understand or accept. Fortunately, he takes his meds, goes to his appointments with me, and despite occasional complaints about doctors and pills, he usually complies. I don’t think the doctors have done much at all, nor have I expected much.

Jeff86

Our experience was a lot like John1965s.  A neuro psych evaluated my DW and determined she had MCI and referred us to a neurologist.    Scans and other diagnostic tests were done, and we had a triple whammy diagnosis:  aneurysms, cerebral amyloid angiopathy, and AD.  24 hours later we were at Columbia Presbyterian Medical Center with the head of a neurology department to discuss prognosis and possible treatment for the aneurysms, which were viewed as potentially most urgent.  

On the CAA, it was explained to us that there are no treatments for the condition.  

As for AD itself, I can’t rightly recall, with the bewildering array of challenges we were confronted with, if the diagnosing neurologist explained that it is progressive and fatal but one way or another I understood that pretty soon thereafter.

Ernie123

Back in 2012 when my DW’s memory issues were becoming evident we asked for an assessment by our family doctor. She did the simple memory test, draw a clock etc, and said it indicated some decline. She then conducted a number of blood tests to rule out other causes. Once all other possible causes were eliminated she said it was most likely Alzheimer’s but no definitive diagnosis was possible. Of course, she was right. Nine years later my DW is in Stage 6 of the disease and living in Memory Care. Looking back, I agree with Likeskitties that caregivers need to be better prepared for what is coming. After about four years following her diagnosis when things were becoming more challenging for me I finally reached out to the local Alzheimer’s Society. There I found all sorts of useful supports: workshops about the disease, workshops for caregivers, a support group of about a dozen men all dealing with the same challenges. My wife benefited greatly from a weekly day program they offered. I realize now I wish the doctor had referred me to the Alzheimer’s Society when my wife was first diagnosed. The Society workers have told me they regularly leave pamphlet at doctors’ offices but few doctors follow through and recommend their programs for caregivers. Hindsight is 20/20! I know now how important it is to reach out and accept help because a caregiver cannot deal with this disease on their own. Part of the initial diagnosis by the doctor should include that acknowledgment and the caregiver should be shown access to community supports like the Alzheimer’s Society. I don’t know how well organized and funded Societies are everywhere, but our local one is great.

Rescue mom

I’m virtually positive the Dx neurologist did not say “terminal,” but I at least knew that, and that many Alzheimer’s patients live for several years after Dx. But I was hugely shocked at how little else he could tell me about progression, or what to expect when.

I was asking questions frantically as they showed us to the door. I got a lot of head-shakes and recommendations of a couple books to read. Thankfully I found this online, and our local Alzheimer’s Association, which were far more helpful.

Just yesterday I scanned a bunch of studies about caregiver mortality. Many, if not most, said doctors should pay more attention to the careGIVER, because that person would almost certainly suffer from stress-related illnesses, more could be done to help the caregiver than the PWD—and the PWDs welfare depended much on the caregivers welfare.

DH and I have been to many doctors, and I have yet to see one who considers that. The docs/neurologists we’ve seen at the memory clinic sure don’t. OTOH, given the demands doctors face now, I don’t think they have that kind of time.

Doityourselfer

In 2016 when my husband began showing signs that something was wrong with his memory, we first saw his physician's assistant.  He mentioned mixed dementia and lewy bodies.  The PA referred us to a neurologist.  The neurologist ordered a PET scan and my husband was diagnosed with Alzheimer's disease.  I don't remember if they said terminal or not but I knew what it meant to have AD.  

My husband's GP now comes to our house for his check-ups (Saturdays only), thank goodness.  What a big relief for me because my husband hasn't left the house since March.  

I have no complaints about either of my husband's doctors or the PA.  They take the time to listen to any concerns and answer questions I may have.  They are caring, compassionate people and tell me to call them whenever I need to.   I'm very grateful that we have them at this time in our life.

Whyzit

Great question Ed! We went to our PCP (2010) because of memory issues. We were sent to Univ. of Colorado Medical Center for testing and they said MCI. Reviewing the information with our PCP he told my DH he would need to trust me on everything. Then he told me, if he forgets who you are take him to the hospital right away. We were living in the mountains of Colorado and 55 miles from our medical providers. No education or resources were given.

One day I was looking at a schedule of classes put on by a community college during spring break. A two day class was offered on “ Using Humor in Caregiving”. I signed DH up for a history class while I went to the caregiving class. We drove the 55 miles and it was the best investment of time and effort I could have made. The facilitator also ran a weekly caregivers group which I ended up participating in for several years. That is where I learned the real scoop about AZ being terminal but more importantly about all the aspects of caregiving, especially caring for one’s self.

Although I now live in Connecticut, I am still in contact with the Colorado caregivers. I do participate with caregivers groups in Connecticut, but one only meets for an hour a month while the other meets bi-weekly for an hour which is not enough. The Colorado group met for 2 hours weekly. We became friends and supported each other.

IWBH1990

Ed,  My DW was diagnosed with EOA in early 2018 just after turning 65 following a battery of cognitive tests, MRI, and CAT scans (I think scans were primarily used to rule out other issues). I guess my wife would have been somewhere between stage 3-4 on the scale of 7 at the that time. When the Neurologist told her she had Alzheimer’s, my wife asked him point blank “how long do I have?” He replied it is very hard to say, but at your current progression, the average would be somewhere between 4-7 years. Maybe wanting to give a glimmer of hope he added that many of his patients have gone on more than a decade after diagnoses, and a few up to 20 years. My wife is a solid stage 6 at this time, recently admitted to Memory Care, and watching her steady decline I am sad and afraid the Neurologist may not be too far off.

Dave

John1965

Is there a way to rename this thread? Think it is full of great information that could help many who are early in this process.

60 falcon

Our story is much like so many.  At 55 yrs old my wife's problems were evident to me, family, friends, coworkers, etc.  After ruling out other possibilities, all the docs would say was depression, PTSD, and MCI.  I felt really let down because they wouldn't listen to me and didn't give any credibility to the written lists of examples of her difficulties.  I knew they were wrong.  Finally at 58 yrs old my wife was given a diagnosis probable Alzheimer's from Mayo clinic.  That doc had the personality of a stump and kind of looked like a stump too.

I didn't press that guy for specifics, but he offered no information.  I was too ignorant at that time to ask the right questions.  All those "specialists" we saw while trying to get a diagnosis were pathetic.  A sorry excuse for doctors in my opinion.  The least they could've done while trying to diagnose would've been to actually give some credibility to what family (me) was telling them. Wouldn't have changed anything but might have avoided a few years of wondering.  NO doctor had the guts to say it's a fatal diagnosis.  No doctor led me to any sources of information.  Pathetic.  It was all on me to do my own research.

Our regular doc is a Physician's Assistant.  She's great! Caring, responsive to needs and questions.  

Josie in Podunk

Ed....yours is the post that finally encouraged me to join this forum today.  It really spoke to me and where we are with our Doc.

Thus far, we have stuck with our GP who is an incredibly intelligent and informative man.  He is truly our family doc from my late mother (91 when she passed 6 months ago) to my 4 year old, autistic GreatGrandMunKee.  I am 70 and have been with this doc since he was a resident as our local teaching hospital.  He is not a geriatric specialist, but the majority of his patients are and many have been with him nearly as long.

He led us through the testing, has advised me in finding my space and pace with my Handyman (my hubby), encouraged me to reach out to other caregivers for support, and to maintain both my health and sanity as we travel this path.

He uses all the words.  He knows I am not the pat her on her head and hold her hand kind of gal...never have been as an adult.  I want it all...good, bad, ugly, not so ugly, mildly hope and completely unvarnished truth.  He even admitted that he would tell us when we needed more information and care than he was capable of providing.

Reading here, I am thinking how fortunate we have been as I have worked to meet the challenges my Handyman’s decline requires to have this man as our Doc.  And, it makes me sad that he seems NOT to be the norm.

Even so the ending is written once the DX is made, we should be able to expect clarity and care from our medical team.  Cuz we are damned lost and they know it....or maybe they don’t.

Anyway, thank you for this discussion.

Ed1937

John1965 wrote:

Is there a way to rename this thread? Think it is full of great information that could help many who are early in this process.

Sorry, John. The software will not let you do that.

Stuck in the middle

Doctors don't usually say "terminal" until time is getting short.  They do say "fatal" to describe an illness that is expected to cause death, but not soon.

My wife went to her PCP alone to get the results of her tests, and came home to tell me that she had AD.  I recall her telling me about progression and possible personality changes, but I don't remember if she told me it was to be the cause of her death.  I already knew AD was fatal from my work, so she may have and it didn't make that much of an impact.

Everyone impacted by AD should be told how AD will change their lives.  If nothing else, so they can do what every adult should do but most don't:  set up medical and financial POAs, tell each other where the assets are stashed, and live each day as if it were precious (because it is.)

harshedbuzz

Dad was initially diagnosed during a hospital admission for a rapid onset "altered mental state". I was in the ER with my parents but allowed my mom to give history without clarifying or contradicting her. This led the resident to suspect WKS and admit him. The next day, I spoke privately with one of the residents to explain that my mother was in denial about dad's behavior and laid out my observations of mood changes going back almost 10 years and confusion and confabulations for about 8. Based on testing and a more complete history, the attending gave dad an Alzheimer's diagnosis. I recall it vividly because 1) it was their 60th anniversary and 2) the doctor did describe is as something that "would eventually kill him but that some of his patients can live 10-15 years". Dad smiled at that and said it was the best news he'd heard all week.

The hospital neurologist turfed him to the memory center where the new doc revised the diagnosis to include WKS. The doctor did talk about life style changes he needed to take and the likelihood of a faster progression to death if he didn't make them.

JoseyWales

DH started going to neurologists for memory problems as long ago as 11 years ago, I think. 8 years ago he went to a different neurologist who diagnosed him with MCI, but didn't tell us. I didn't know that until several years later. He sent DH on to a neuropsychologist, where DH went through testing three different times over the years. Her results were always the same - depression and anxiety. No mention of MCI. To be fair, DH was in his mid 40s at the time.

To make a super long story short, he has seen 6 different neurologists and not a single one has given a diagnosis yet. Not a single one has mentioned accessing any resources. DH is now stage 6 and about to go into memory care. Everything I've learned I've researched on my own. DH's paperwork from his PCP just says "Presenile dementia".

Tony484

We are in the midwest and were lucky enough to have the Mayo Clinic covered under our insurance. I knew some of the early signs of AD, talked to our PCP about them, and after DW was given the mostly screening tests done by PCP's (mini-Cog, MMSE etc.) he referred us to Mayo.  While it was a 6 month wait to get in, DW had a crystal clear Alzheimer's diagnosis after 2 days of scans, testing, etc. there. The final appointment was entirely focused on planning for the future, sources of good information, and likely timelines of progression including the variability of the timelines. Because I have a basic statistical background, the information related to later stages seemed to be presented in a way that the team coordinator was sure I would understand but DW wouldn't.  Fortunately, DW soon forgot the diagnosis, and while I was in shock and overwhelmed at the time of that "informational" appointment, I retained enough of it that it has served as the bedrock of of my planning for the future and my ability to obtain useful objective information, including information from this board. I am saddened as I read over and over again on this board how poorly people are treated by their PCP's and neurologists, how they spend months being sent from pillar to post with little resolved, and then how little information they receive post diagnosis from the supposed "experts".

JJ401

I believe doctors in general don’t like to use the word terminal. My first husband died of lung cancer. I don’t believe I ever heard the oncologist use the word. The closest he got was on our diagnostic result visit when he gently encouraged no treatment. But, DH was only 49 and we sought out a clinical trial. The trial did buy him some quality time, but the end result was the same. DH’s hope, at the end, was that his participation somehow helped others.

I don’t expect the neurologist to use the word. DH’s neurologist is really good at answering my questions, but I’m reluctant to ask some of them in front of DH. Even writing them and giving them to the neurologist before hand is problematic if DH is present for the answers. DH may forget tomorrow what was said, but in the moment the answers would be frightening. 

But, the bottom line is that there is no cure. Alzheimer’s will be the terminal disease unless something else overtakes it. 

Iris L.

My experience has been very different.  I had to leave my pediatric medical practice at the age of 37 because of worsening memory loss.  The diagnosis then was depression and anxiety.  In 1987 there was no talk of MCI.  I took what I thought would be a brief medical leave of absence, but I was never able to return to practice.  In 1993, at age 43, I was diagnosed as having systemic lupus and the memory loss was attributed to that. Fast forward to 2003, at age 53, I could not do my taxes nor handle financial matters.  In 2007 at age 57 I told my internist I was having trouble functioning.  He asked me about hobbies.  I suppose he thought I was depressed.  I found a general neurologist on my own who ordered a brain PET scan but no other tests.  When it was unremarkable, she said I was okay.  In late 2008, my rheumatologist referred me to a dementia specialist neurologist who listened to me half-heartedly until the extensive testing by the neuropsychologist revealed cognitive impairment and impatied executive functions.  She provided a detailed report,.  She told me that PWDs cannot retain new information, but she did not say that I had Alzheimer's.  Depression was also included so the neurologist offered me a trial of antidepressants, which had no effect.  

During this time I had been reading the message board threads.  I read just about every thread and it took me three months.  I came across some caregivers who advised me to stop using the stove after I revealed how I was burning pots and leaving the stove unattended.  At this time I was seriously considering moving into an assisted living facility because I was drowning and couldn't take care of myself, and I was becoming a danger to myself and my neighbor's.  The neurologist had offered me a trial introductory dosage of Exelon patches.  I had been afraid to try them because it would be like admitting that I had Alzheimerxs.  But with the risk of fires I was desperate and I had to do something.  Within about three days I noticed improvement in my speech and memory.  At my one month follow up appointment, I told him I wanted to continue.  He advanced the dosage to my current dosage.  Namenda was added about a month or so later.  This was in 2009, age 59.  

My neurologist never said I had Alzhrimer's Disease.  He continued to test me annually repeated my MRI, ordered gene studies for APO e4 (positive),  referred me for sleep apnea testing and a special type of cognitive rehabilitation done on the computer.  He actually told me I did not have to come back to him, but my PCP refuses to refill my Exelon and memantine.   A few years ago, he enrolled me in a clinical trial in order to get an Amyvid PET scan which at the time was done only in clinical trials.  The results came back no amyloid.  So he told me, at this time I don't have Alzheimer's disease.  I asked him, if I don't have Azheimer's, what do I have?  He could not give a specific  answer, but said that lupus, hypertension and sleep apnea are all probable contributors.  My diagnosis remains cognitive impairment not otherwise specified which is no longer a DSM-V diagnosis.

I was doing relatively okay until 2018.  My short term memory was always bad but I began to notice gaps in my long term memory.  I had planned to follow-up in 2020 until Covid got involved.   I am having more difficulty this year.  My neurologist rarely mentions the word Alzheimer's.   No one in his office says that word.  He told me he does not like to specifically diagnose Alzheimer's unless there is confirmation from MRI or PET scan.  He is a neurologist who does research and clinical trials himself.  I think this is why he may be a bit more involved.  I attended an open house for prospective research patients.  He has a floor set up like a hospital floor in a medical building, staffed with nurses.

A geriatric care manager I had hired told me that the PWD lives an average of seven years after diagnosis.  I had not known that and it stuck in my head for a long time.  I am age 71 now.  I have had significant memory loss and low functioning and I still don't have a specific diagnosis.

Iris 

DrinaJGB

Just recently I asked DH's neurologist about doing testing with APO e4, and he shrugged it off. Sometimes it feels like they want to keep you in the dark so they don;t have to deal with it. Go figure.

June45

Iris, thank you for sharing your story!!

Doby

We have had 2 neurologists, and I don't recall either one of them telling us that AD is terminal. It took 6 months to get an appointment with the first neurologist (March of 2018) because the practice was seriously overbooked. The neurologist ran oodles of blood tests and also referred DH for a PET scan and an MRI. During this time DH (who was an hourly employee) was becoming less able to put in hours at work. After about 1 1/2 years of dwindling finances I submitted a disability application but DH was rejected since there was no definitive diagnosis. I then did some research and found out that there is a Residual Functional Capacity Form that the physician could complete to help with the the disability claim. I took the form to the neurologist's office and followed up many, many times on the status. I finally received a call in January 2020 telling me that the form was ready for pickup. DH rode with me to get it. We got back to the car, opened it up and saw the AD diagnosis. I cried like a baby all the way home, then put on my big girl pants and applied for disability again. The 2nd time was successful.

In my limited experience, neurologists have been of little value other than ordering scans and ruling out other potential diseases. I've found our local nurse practitioner to be much more helpful in working with us on symptom management and actually taking my health into consideration as a caregiver.

Iris L.

I thought of something else that is germane to the OP's question.  When I first joined, in 2009, Michael Ellenboggen had been posting a lot about his plans to euthanize himself.  That type of talk disturbed me.  That was the focus of the book and movie, "I'm Still Here."  In the movie, the character saves up sleeping pills so that she can kill herself at the right time.  She enters her bathroom with a container of pills but is startled and distracted by the hired caregiver entering the home and calling her name.  The pills scatter on the floor, and she forgets why she is in the bathroom and what she had been intending to do.  In the movie the caregiver nor the husband ever wonder why all those sleeping pills were scattered on the floor.

Despite my cognitive impairment diagnosis, a prominent geriatrician declared that I had to accept that I had dementia!  Even though I was on Exelon patch and Namenda, I clung to the cognitive impairment diagnosis.  Being told I had dementia threw me into a deep depression, because I now had the realization that AD was terminal.  I had gotten the impression that my time was already limited, and that my only hope was euthanasia to avoid total devastation as a person.  By the grace of God and my wonderful peer members and the Care Consultant, I came out of that deep depression.  

Often members will ask if they should inform their LOs that they have Alzheimer's Disease.  My first response would be to say no.  Or to be very cautious.  For the thirty percent of PWDs who do not have anosognosia, learning they had such a devastating disease can be a huge traumatic SHOCK.  The already weakened mind cannot handle this without help.  Often members report that their LOs say words to the effect that they would kill themselves if they ever developed Alzheimer's.  They need to be taken seriously.  

Even if they do not kill themselves, they may develop a deep depression.  It has been noted that PWDs may not remember an event, but they may retain the emotions associated with that event.  Thus, your LO may not remember the diagnosis, but may retain being depressed.

There is discussion on another thread about caregiver mortality.  I read that 25 percent of caregivers die before their LO.  This came true for a member in the early days of the message board.  Her son posted one day that she had expired from a sudden heart attack.  Another issue that is almost never mentioned is the issue of murder-suicides.  Just last week in my local newspaper was a story of a nursing home patient murdered by her husband who then killed himself.  

These are known issues of terminality that are never mentioned by doctors or anyone.

Iris

miamvp

Iris - I think you are quite amazing, based on all your history from age 37 to 71, to say you have Alzheimer's is hard to believe with your apparent cognitive ability to write and record all that you have done on this thread.  My DH was an extremely intelligent and active MD, diagnosed in 2017 at age 73 by a neurologist who saw his very diminished hippocampus on the MRI (that was read as "normal" by the radiologist).  He can hardly carry on a normal conversation at this time, much less write anything at all, even his name at this point.  He does "work" a lot, often worried about patients and ER call, etc.  but he could never carry on the amazing conversation on a computer program thread the way you have.  I wish you the very best, and am very sorry to hear of your difficulties for so many years and frustrations with trying to find out what's happening to you. Thank you for sharing.