Looking back, what were some of the first Red Flags you noticed with your LO??

abc123

How do you go about getting tested? Where do you start ?

lqadams

My husband has been diagnosed with Lewy Body dementia. He is 76.  In his early 50's I noticed his driving skills were getting bad. He had trouble judging distance, especially the right side of the car, and he would drive well under speed limit in the left lane. On one occasion he was puttering along in the far left lane on a busy road. People were passing on the right and being nasty. When I asked him to move to far right lane he jerked the wheel, flew across 2 lanes, parked and yelled at me "You drive then!". I knew then and there that something was wrong, my husband had always been quiet and kind.

ARgirl

My husband first exhibited emotional changes - he was very even tempered, quite brilliant, rarely angry, then that slowly evolved into outbursts which my then high school age daughter noticed. This occurred about a year before subtle disorganization and work performance issues occurred; a 100% work performance for years slid to near dismissal for errors. When he opened up a spread sheet and did not recognize it, he admitted he thought he knew the culprit: familial early onset Alzheimer's (present in multiple family members).  He was 59 when diagnosed.

We immediately consulted our internist, who placed him on immediate disability/off work status. We quickly moved to our physician for testing, to avoid loss of his job, benefits, disability, etc. I was a barracuda with HR to protect him and his benefits. 

MRI, labs, etc. performed to rule out a "fixable" issue such as brain tumor, metabolic process, but none were found. Referral to a neuropsych center for neuropsych evaluation.  The neuropsych professional knew almost immediately by end of exam that my husband had been correct in his self assessment and diagnosis.  It was just awful.  He begged to work part time, but a corporation does not allow impaired performance. So, we became totally disabled, quickly receiving SS benefits due to compassionate diagnosis list that moves quicker in getting benefits.

So, line up your doctor, neuro, and any adjunct professionals you may need, particularly elder law attorney and trustworthy financial advisor.  Our team has been great, though nothing can resolve the tragic diagnosis.  We are now 10 years into this disease at home. I am available any time on this forum if you have any other questions. 

AR Girl

terei

When my mom was almost 80, she kept calling me + asking about mail she was getting from her trust about stock holdings.  I told her to send them to me.  They turned out to be run of the mill annual reports that she had been receiving for over 40 years. I asked her if she wanted me to have notices sent to me + she said yes.     I just figured she was 80 + it was normal to have some cognitive loss from age. 

Then, one day she called + told me a ‘funny story’, that she had driven my brother to the airport (which she had done many many times prior) + had gotten lost + it took her about 2+ hours to get home(should have taken about 30 min) Then her husband told me she left the stove burner on under an empty pan a couple times.   She went to the doctor + was diagnosed with dementia.  It took a couple visits from me + some research to figure out what was happening.  While I was there she would do several loads of wash every day with just a couple things in the load.  

A few months later, she was driving with her H in the car + they were broadsided by a big truck + they were both seriously injured(I think she turned in front of the truck) + I moved them from AZ to MN.  They were in AL.  He died + she progressed from AL to MC  over a span of 4 years til she died.  

While she was still talking, she would tell people that she had ‘dyslexia’ to explain any lapses she had. She did not talk the last year of her life, just nodded yes or no or shrugged.

Rescue mom

There were so many things that were not normal for him. I don’t even recall most,  but some: formerly neat, he stopped putting up clothes, just piled on floor.  He didn’t read books anymore, after being a voracious reader. Losing his sense of direction, which was legendary among friends we travelled with. We ate out a lot, he stopped asking questions or looking at menu, just said “same as her.”, 

I asked his PCP for almost two years for testing. The PCP shrugged it off saying we all get forgetful. DH basic disposition never changed much, no complaints, not grumpy, so it was easier, maybe, to overlook things he just did not do.

Then, in the same week, DH was involved in a traffic incident. He was lost 2 miles from home, a route he’d travelled for decades, and didn’t know where he was going or why he was in the car. Cops brought him home. Not the first time, but first I knew. And the CPA called, DH had taken him our tax info, but what DH gave him was old greeting cards, junk mail ads, and a couple of very old phone bills.

Also, DH talked about being “left out” at his office. I thought a personality issue, or maybe he was over-sensitive. I later learned they saw loss in abilities, and didn’t know what to do about it. DH was the senior partner….The CPA also told me later that he often sees it early, but families just got mad if he said anything.

But getting lost and the taxes got the PCP to give the required reference to the memory clinic. Cognitive tests were spread out over several days, plus brain scans and other physical tests. I will never forget, the doctor told me all I could do was start looking for caregivers and/or placement, and find a support group. DH was already mid-level Alzheimer’s. The scans were much worse than I ever imagined, not to mention other test results.

Also, back to early red flags…he was formerly empathetic to a fault. Then he had no interest, no concern whatsoever, for others’ issues, me, our kids, nobody. Kids had major tragedies, he could not have cared less. He was never mean about it, just had no interest. It was so atypical I was actually googling “loss of empathy” …

Bob in LW

I first noticed my SO's memory loss when she couldn't remember where to find things in her kitchen, although she had lived in the house for about 12 years.  It has gotten worse in the last few years, and she was diagnosed with Alzheimer's by her primary care doctor and a neurologist.  Fortunately, she can still function normally except for her short-term memory loss.  Our bathroom looks rather cluttered because she likes to leave the things that she uses regularly out where she can see them, rather than having to search through all of the drawers and cabinets.

Bob in LW

abc123 wrote:

How do you go about getting tested? Where do you start ?

One way is to have the person's primary care doctor refer them to a neurologist.

Ed1937

Bob in LW wrote:

abc123 wrote:

How do you go about getting tested? Where do you start ?

 

One way is to have the person's primary care doctor refer them to a neurologist.

One thing I would add is to ask for a neurologist who has dementia patients as a large part of his/her practice. Or just find one yourself. If you have a referral, you might be able to get in sooner.

Ed1937

The first thing I remember seeing is after my wife talked on the phone with one of our kids, I might ask her what they had to say. Frequently she would say she didn't remember. One of the things she lost early was the ability to do easy math problems.

Lills

It's hard to remember the many, many examples of when I first noticed DH's impairment.

DH has FTD so it was never memory issues. It was a case of "Who took my husband?"  DH's was more a lack of empathy; he didn't want to do anything anymore, no chit-chat conversations with me, no movie discussions (lack of any abstract thoughts), etc.  His driving skills were becoming a problem as he would slow way down in intersections; I  thought for sure we would be hit from behind.  Another example is when we would eat out.  He would finish his meal and then expect to go--even though I had barely started my dinner.  Again, no empathy or awareness of others.  His judgment was impaired. The final proof was when he wanted to install a clearly broken lightbulb into the socket.  I knew....

One more thing:  DH's internist referred him to a neurologist.  DH drew the most perfect clocks for several years.  He correctly solved math problems, etc.  I don't think the neurologist even knew about FTD...or didn't care.  Best thing I ever did was to switch neurologists!!  

Vitruvius

TLDR:  If you have a University Medical School near you they may have a department that specializes in Dementia, that's where I started, they were extremely responsive.  I first noticed problems with words and conversations.

As for where to start, here's what I did:

I had been trying with limited success for months to get DW properly evaluated under our old health plan, a very old and well known HMO, but they were terrible to deal with in trying to get a proper diagnosis, hampered by the pandemic just starting to impede health care and by what turned out to be her rare form of dementia, Semantic Dementia (SD). With one month left to make a one time only change from a Medicare Advantage plan to a Medicare Supplement plan (without underwriting), I decided to make the change.  (I was told a person with suspected dementia will not pass underwriting.)  This was a great change. Within two weeks I was able to have DW assessed at an Alzheimer’s Center associated with a state teaching hospital, by professors of Neurology and Neuropsychology who specialized in dementia.

My DW underwent several hours of testing at the Alzheimer’s center. These tests included the MMSE and the MOCA. They also immediately ordered an MRI, a PET scan,  and an APOE test, all of this was at no cost to us. Due to her rare Semantic Dementia they further referred her to a nationally recognized neurologist at a major teaching hospital who specializes in FTD variants like SD. 

The former HMO had only done a CT scan (which we had to partially pay for), which the new neurologist said was the least informative scan, and in fact the HMO’s PCP could only comment that it showed “some brain shrinkage which could be normal for DW’s age”, not very insightful.  In contrast, the University Alzheimer’s Center provided me with a detailed 14 page report of the testing leading to the diagnosis, gave me a thick packet of information and also set me up with a Social Worker who specializes in helping caregivers.  I was informed in follow up discussions about the disease’s likely progress and average time frames for the coming phases.

As for what I noticed first:

She had been exhibiting symptoms, largely word loss, for about a year before diagnosis at age 69.  We thought this might be related to a thyroid condition for which she was being treated, as word loss is a symptom of a thyroid disorder. In hindsight I can see there were other cognitive signs going back probably a year or more before that which I didn’t really appreciate the meaning of. SD patients don't tend to have problems with memory or orientation as early signs but there were minor cognitive issues I brushed off as DW adapting to retirement. When finally given the SD diagnosis they suggested that maybe it should be “backdated” enough to call it early onset.  Although a diagnosis isn’t a great help, it did make sure that unhelpful medication was avoided.  

My real panic began one Sunday when DW first failed to recognize who I was. I was still working, I called them the next day, Monday, and quit for good.  I knew I needed to drop everything else and focus on my DW.  This was coincidently just a few days before her appointments to the Alzheimer’s center.

Crushed

My problem was what I noticed was not a red flag.

She wanted to be "with me".   She was 57 and just wanted to be with me all the time.

It was great.

My daughters noticed peculiarities.  finally later that year she could not add  up a column of figures.  

JoseyWales

DH noticed his problems first. Just generally couldn't recall things like he used to. The first thing I really noticed was the problems he started having with numbers - mainly calendars and time. 

It took years and years and years to finally be diagnosed. But that's early onset - no one wants to tell a 45 year old they may have dementia.

Marie58

Some red flags with DH:

He was less social and often felt left out.

Mixed up left and right when driving and had trouble in unfamiliar areas.

Misplaced a lot of things.

Had trouble learning how his smart phone worked (it was his first one).

Generally had trouble with technology, especially his computer at work. He'd say new program was bad, computer isn't working right...

Had trouble with math, couldn't do our taxes even though he always did them.

He was always our trip planner but he had trouble with that.

He got a sweet tooth and ate a lot of candy, which was not normal for him.

Performance at work declined a lot, which I was unaware of until after he was diagnosed.

For diagnosis, we started with his PCP who did screenings in his office and ordered an MRI. Then he referred us to a neurologist who did further testing and referred us to a neuro psych.

easy23

Looking back, the family missed a red flag. My DH and daughter were taking dance lessons at Arthur Murray in preparation for her wedding. One of the dance instructors asked my daughter if my DH has any neurological disorders. Sure enough, 4 months later he was diagnosed with dementia.

GothicGremlin

We all noticed several things in fairly close succession.  My cousin first noticed Peggy slurring her words and asked me if she had a drinking problem (she doesn't).

Peggy and I needed to sign some forms regarding our parent's estate, and she couldn't sign her name. She asked me if I could do it for her, but it was something she had to do herself. She could write out P-E-G, but when she got to the second G, she couldn't do it. Turns out all double letters were an issue for her.  With much encouragement, she eventually got it done. 

The third biggest red flag was when she lost her car parking in San Francisco when she was coming to visit me when I still lived there. She'd been to our apartment many, many times, but this particular time, she went to some random far away parking garage instead of parking in our driveway. We went looking for her car, couldn't find it, and she said words to the effect of "oh well, I guess it's going to get towed and I'll never see it again." She was fairly apathetic when she said that.  I was kind of shocked, and told her we'd find it. After five hours of walking all over creation, we found it.

After that I convinced her to see a neurologist. The neurologist did all of the tests one does, she failed almost all of them. He recommended an MRI and a PET scan. It was a combination of the neurologist testing, the MRI, and the PET scan that led the doctors to an Alzheimer's diagnosis.

toolbeltexpert

Abc I can't help with getting a diagnosis I haven't  found it would be helpful for her,, but there will come a day,, when she is gonna need meds to calm her, that is gonna be my trigger. The earliest losses I noticed, 1. checking account had lots of red letters in it, corrections galore "New Testament math problems what a revelation. " I finally went to the bank after not writing a check for a month and got the balance. I took over after it was messed up again in a couple months. I kept a separate check register so I wouldn't have to go to the bank again. Not remembering  things was a first sign. 2. She would follow me to my second church when I  was a pastor, she said she couldn't find it cause she didn't get there often. Excessive milage on short trips to town, she was getting lost, that was one of those things I didn't  pick up on till I started reading here.3. She labeled my clothes closet so they would get put in the right place. Notes notes and more notes,notes about notes about notes.

jmlarue

So many red flags...where to start? Misplacing important items like wallet, keys, watch, wedding ring, checkbook, credit cards, tools. Something was missing on an almost daily basis. An "all hands on deck" search would usually find the misplaced item, but not before my DH would engage in an angry rant about people stealing his things or gaslighting by moving them. Distrust and paranoia caused a lot of family upset and hard feelings. Road rage was another disturbing early symptom. He'd start swearing before he was out of the driveway and not stop until he turned off the key. He began to speed up if a driver tried to pass him in the fast lane or he would pass someone doing a couple of miles under the speed limit and then cut in front of them with inches to spare. He should have had the bumper sticker "Horn broken. Watch for finger." He was clearly dangerous and becoming more so very quickly. He was incensed when I finally refused to get in the car if he insisted on driving - but I stuck to my guns. God only knows what he was doing to other drivers when out in his truck on his own. Loss of executive function was a huge red flag. DH simply could not initiate or complete any task requiring more than a couple of steps. For 40 years of marriage, he handled every house repair, remodel, or mechanical breakdown on his own. I used to tease him about being so OCD that he felt compelled to "over-build" everything he did. Suddenly, he couldn't figure out how to replace the dead battery in the smoke detector. He destroyed it trying. I knew I needed to get him assessed the day he said he needed to organize his workshop and put away all his tools. 4 Hours later, I went to see how he was getting along and found him standing in the middle of the shop, frozen in place, and nothing had been touched. He finally admitted that he just didn't know where to start cleaning things up. Scary. Last on the list of early symptoms was the inability to find his words - much like a stroke victim. Nouns were the first to go - couldn't name people, places or things. I was forced to play the game of 20-questions in every conversation. It's been about 6 years since I first started noticing his symptoms. About 3 years since diagnosis of vascular dementia. His speech now is pretty much word salad. He can no longer read, or follow the plot on a TV show, use the TV remote, or cell phone. The rapid rate of his decline has caught me off guard a number of times. Do take the advice not to delay getting durable power of attorney for finances and medical. Spend the money on an elder care attorney even if it means eating Ramen noodles to pay for it. It's absolutely critical not to avoid these measures because you're afraid of provoking your LOs anger.

M1

Abc: I have to ask, why are you asking? Are you worried for yourself? Your dad?

My clinical experience was that people who complained about their own lapses were usually okay, but when a family member complained, those were invariably the folks who were really in trouble.

I think you could certainly ask your PcP for neurologic referral for cognitive testing. But I also would ask a trusted friend or family member to watch you closely and honestly report any concerns over time. I think that's the most reliable diagnostic tool long-term.

I'm sure all the stress you've been under can't be helping.

Alzheimer's research centers are also interested in volunteers to follow over time, that might be another tack. Something I'd like to do at some point.

PlentyQuiet

Executive functions were glitchy, he couldn't organize or plan. Some memory problems and word finding were there but the decision making problems led me to go to a PCP appointment with him and just share what I was noticing. 

MRI, lab etc to rule things out plus full neuropsych eval that noted something was mildly off but not the typical alzheimer's pattern. Then the follow up first meeting with Neurologist. He noticed some memory lapses, but became concerned when I, assertively, said something is wrong, he makes poor choices if at all. 

Lumbar Puncture showed positive biomarkers for EOAD. He was diagnosed with the dysexecutive variant.

Quilting brings calm

In January 2013, my mom fell out of the camper when they were snowbirding in Alabama. She hit  her head on concrete, her hearing aid was in and she started bleeding from that ear.  She was over 12 hours away from me.  My sister was several hours closer, so she went to help my dad.  I never really got the full story of what damage truly was.  They didn’t come home immediately as they should have. I know when she got back up north, the doctor up here disagreed with the assessment of the doctors down south.  Mom lost her sense of taste, smell  and balance for over a year.  Any off behavior in those first couple years, I attributed to that fall. There was an increase in her anxiety and hurt feelings when people weren’t paying ‘proper’ attention to her.   In 2016, she quit speaking to her sister, and my parents moved down south.  In early 2018, I was  called south as was my sister.  The doctor attributed her ‘flakiness’  to sudden stoppage of pain pills. An rescheduled appointment with her neurologist there the next week ( my sister attended), discovered she’d had a mini-stroke, with some temporary issues in following conversations. We would  have known this the day we arrived had she not cancelled her scheduled neurologist appointment( no idea why she originally had that scheduled appointment).   She seemed to be okay afterwards.  In late 2018/early 2019, I noticed repetitive conversations on the phone, trouble balancing her checkbook.  As late spring began, she wanted to sell the camper and move to an apartment.  She felt the camper life was too much for her.  I tried to talk them into moving back home.  No go. I was called south a second time in September 2019  shortly after they moved to an apartment.  Doctors attributed it to delirium from the move.  My sister came down after I went home.  By October she was an absolute mess - you know the rest of the story as that is when we moved them home. 

If they had not moved south, I probably would have picked up on certain clues earlier.  

harshedbuzz

Disclaimer: I would not recommend the path my family took to a diagnosis.

I noticed a subtle shift in my dad's personality as early as 2005. My dad and I never enjoyed an easy relationship, but he seemed "meaner" than usual. He sold his boat which my son enjoyed in a retaliatory move because I sent my DS with autism to a social skills camp and summer school instead of spending weekends at his beach house. He was pretty judgmental of any therapies we provided for DS and accused me of "making him special ed" at which point I threw up boundaries and sort of ignored him for a couple years as I had no spoons for this. In the next couple of years he managed to alienate my niece, his brother, several good friends and my parents found themselves dropped socially because of his unfiltered behavior. I mentioned my concerns to my parents in 2006 and was blown off. 

In 2008, my parents traveled to see family and stayed at my house. During this visit we attended a band competition several towns away. Dad's brother raised his kids in a house across the street from this stadium, he owned a business not a 1/4 mile up the road from the stadium and yet he had no idea of any of this even when prompted. Later that night I privately appealed to my mother who again blew me off and shared my concerns with dad who claimed this was "a normal part of the aging process". 

By this time I was about the only family member who saw them. I typically left my DH and DS and would drive 4 hours to their beach house every month while they were there and make an annual pilgrimage to their place in FL. By 2010 dad's short term memory was very unreliable and he'd started to conflate longer term memories. The latter felt very like he was attempting to rewrite family history in order to level the playing field between myself and my sister (his mini-me favorite) who was very troubled. I tried to convince my mother to have him evaluated and she continued to resist until about 2014 when she agreed but seemed unable to cobble together a plan to make it happen in the context of dad's mantra about this being "a natural part of the aging process".

She made a plan to bring it up with the PCP near the beach only to find they'd sold the practice. Then she planned to bring it up with the PCP in FL in the winter of 2016 but before she could, she went into liver failure. I checked in almost daily and mostly dad told me she was napping or that she was lazy and mean and wouldn't cook dinner. Once he said he'd taken her to the doctor who suggested she see a psychiatrist. A neighbor ran into her when he'd dragged her to Publix- mom was the color of a school bus- and drove her to the ER. She was admitted and a few days later the hospital called me as mom's emergency contact as they'd figured out dad wasn't firing on all cylinders. I flew down and found dad hosting happy hour in a bath towel and realized I needed a Plan B. I stayed for a few weeks and flew home where started to research memory specialists. 

Mom never did get a chance to bring up dementia with the PCP- dad was diagnosed with a recurrence of prostate cancer and they didn't come north until mid-July. He was in much worse shape cognitively, so I made an appointment at a memory center in a city near me- medical near them was a problem. In late August, I got a call from my dad's brother that he'd sent my parents to the ER because dad sounded as if he'd had a stroke. My uncle knew my parents would not be forthcoming about this, so he let me know. The ER cleared him for a stroke and referred him to a neurologist who was scheduling 6 months out. I don't know if the ER was substandard (my BIL who was an ER doc in a teaching hospital felt bloodwork should have been done) or if my parents were poor or evasive reporters but testing and treatment that might have helped didn't happen.

While my parents were in the ER in MD, my mom's sister died and my mom made arrangements for me to drive her to Boston for the funeral a week later. I did offer to stay with dad, but mom insisted I attend as she has arranged for good friends to look in on dad daily. The friend's reports were concerning and we drove home immediately after the burial. Mom dropped me off and drove home where she found the house ransacked with broken glass and blood eveywhere. We later figured out that he'd had a psychotic episode and I perhaps mis-identified reflections and paintings as intruders- he kept asking mom to find the body of the man he'd killed. I insisted she put him in the car and met her at the state line where I met them and drove to the ER of the memory center where I'd made the appointment. The resident pretty quickly honed in on Wernicke-Korsakoff's and started treatment before he was even admitted. The attending who took over believed it was garden variety Alzheimer's. I think part of the discrepancy was that my mom's history the first night sounded like an acute onset  altered mental state while I was able to go back 10 years with more subtle symptoms. He had an expedited appointment at the clinic 8 weeks later where the new neurologist ordered more tests (notably a PET scan to observe glucose uptake) and diagnosed mixed dementia- WKS and ES Alzheimer's. 

In the weeks after dad's IV Thiamine treatment, he did regain some cognition and memory but not to where he'd been 10 years prior. I think the take-away of this saga is that it is prudent to get evaluated sooner in the off-chance that what you are seeing is treatable. I know that dad would have died eventually from complications of Alzheimer's, but if his WKS was identified earlier when he still had the cognition to make a choice to be sober he might have lived longer and/or with a better quality of life.