What was the first symptom that really floored you?

Ed1937

My wife had been showing symptoms since probably 2016 or earlier. Short term memory loss, inability to use a computer, do basic math, or use a remote didn't really get to me that much. I guess it was expected. But when she asked me if I wanted pancakes for breakfast, and I said "Yes", she reached in the fridge to get the buttermilk out, then just stood there. I asked her what was wrong. She told me she didn't know what to do. I made bacon and eggs for breakfast. That was mid December 2019, and that really hit me like a ton of bricks. She has not tried to cook since then.

Crushed

"Floored"  in two different ways. 

DW had always been a hard driving independent professional woman. All of a sudden in late 2009 she started "wanting to be with me"   These were routinely "romantic offers".  Her new position allowed her to routinely work from home.  She would come up tome and say "is that really important?"  I was floored but missed that this was an early sign of dementia. My daughters noticed her lack of focus on "mother of the bride" duties.    
 
 Sept of 2010 we were in Alaska in an RV lots of fun.  On our last full day I went in to pay the bill and gave her a column  of two digit numbers to add up  (they were frequent flyer miles) I came back to the RV and she said I don't know how to do this  
(DW was a summa *$%&  laud in mathematics )

I was stunned.  I was worried about a stroke  so we did a few physical things and I watched her,  she was fine.  We flew home the next day as planned .  I took her to Kaiser first thing and she failed the clock drawing test    

Later lots of payments showed up from the IRS. In  fall  2009  she had paid the taxes twice

 

M1

Ed mine was when my contractor partner couldn't figure out an unfamiliar shower in a Florida hotel.  Probably 2013 or 14.  Also in 2014 she couldn't figure out how to open a separate checking account for her nephew.  She had managed literally millions for her clients over the years with separate accounts for each job.

Jeff86

My DW left the house to drive to a dentist appointment.  The dentist’s office was 6 miles away. She never made it.  

An hour and a half after the scheduled appointment, I received a call on my cell phone.  My DW was hopelessly confused about where she was, and finally stopped at a mall, entered a store, and threw herself on the mercy of an extraordinarily kind store saleswoman who rang me.

My DW was 20 miles away, and like the Neil Simon play, she was “lost in Yonkers.”

toolbeltexpert

Ed mine was my dw not being able to get back to the mcf I was visiting. She went to Walmart 2 miles away on a divided hwy, a total of three turn to get there. She called crying after I gave her directions twice saying she couldn't find her way back. I started walking from the mcf and someone I know there picked me up and brought me to her. She was crying when I got yo her  that was the day I said she didn't need to be alone anymore. I do all the driving. She has blank keys on her ring. I believe that was in 2018

caberr

I believe it was 2010.  My DH did everything around the house.  We had bought new storm doors.  He got the old ones off and installed the new back storm door with no problem.  But when he went to install the front door, he stopped.  He couldn't figure out how to put it up.  I asked him why and he said he didn't know.  We kind of laughed. He ended up getting it on but put the handle on wrong. He said it was right.  It's still wrong!  

Thinking back there were a few things that were odd but never thought much about it.  The storm door sticks in my mind.

harshedbuzz

My parents came to stay with me so they could visit dad's brother and some friends. My then high school freshman son had a marching band competition and they decided to meet us there. 

Dad got lost driving from my house to the high school 10 miles away. I bought this house in 1999; he and my mom built the house and lived here for 12 years. They're familiar with the area.

The entrance to the high school is directly across the street from his brother's house. You can see the house. If you look over the top row of the visitors' side of the stadium bleachers, you can see the building in which he and his brother owned a business together for 8 years as well as the entrance to the sub-division in which his own parents lived when he was a young man. When I pointed out the landmarks, he told me "they've moved all the roads". 

HB

Rescue mom

Two actually, somewhat related.

And somewhat like MC…on a vacation, DH could not turn on the very simple shower, nor flip the light switches, nor find the bathroom, or get a drink of water. Etc. Since he did all that at home, I was stunned at what he could Not do elsewhere. Nor did I know that happens when away from home. Maybe this was the most surprising to me.

Bigger though, was him getting lost while driving, very near home, our longtime neighborhood, to a close place he’d been a thousand times. We travelled a lot with friends, and his sense of direction in some city we’d visited one time before, years earlier, was legendary. Then he lost it.

Getting totally lost like that, was the big “signal” that something serious was wrong—more than absent-minded or having an off day. I suspected serious problem earlier, but nobody would believe it, including his longtime PCP, until this happened. But I never thought he’d get lost like that, in such familiar surroundings.

Vitruvius

Just for others benefit I will note that PWD who have FTD or a variant of FTD, like DW (Semantic Dementia) have different initial symptoms. Memory loss and orientation problems were not significant in DW's early stages and still are less of an issue than other cognitive impairments. This made diagnosis more difficult and certainly affected my ability to recognize her problem as dementia rather than other conditions that have initial symptoms similar to Semantic Dementia, mainly word loss which is also a curable symptom of her thyroid disorder. 

As an example, DW's new neurologist was at an office 20 minutes away, at a location we had never been to. When we went on our second visit three weeks later DW gave me accurate turn-by-turn directions to the office. However she did this because she did not recognize me as the person who took her the first time and she felt compelled to give the new guy directions. 

This failure to recognize me as her husband is what changed everything for me. Although word loss and losing the idea of concept words is the major feature of DW's brand of dementia it is the delusions, hallucinations, and loss of motor control that are bigger issues than either words or memory. 

Quilting brings calm

My parents were out of state.  We made an emergency trip there in 2018 due to some ‘confusion and anxiety’ that was first explained as a medication issue and then as a mini stroke. In the spring of 2019, she seemed overwhelmed by living in their camper and wanted to move to independent living.  They did, but she then was diagnosed with delirium. I made the second emergency trip to get that diagnosis in September 2019. Just more confusion and anxiety and then rapid decline from an undiagnosed UTI.  My sister came when I left. 

The first symptom that floored me was that she wandered out of their apartment overnight and went to a strangers apartment.  That’s when my sister called me to come back down - she’d been there for a couple weeks.  Another symptom that floored me while I was there this third time was her refusal to take her medication without 30 minutes of begging her every time. That same week, she saw my stepdad put his guns in his truck in preparation for their move to our state.  She somehow translated that to thinking he wanted to kill us. The hits just kept coming during that move.  

After treatment for the UTI, and a month in rehab, I think the circular conversation of ‘ ask a question of me, I answer it, ask the same question of me, repeat’  for 20 minutes straight was what floored me first. 

jmlarue

DH had been losing executive functions over a couple of years, but was doing a good job of covering it up. He has a separate garage he calls "The Shop" that became a disorganized, wall-to-wall tangle of tools, hardware, and broken items he couldn't bear to throw away. Forget about finding a path through it - there was none. Every time he tried to get things reorganized, the best he could do was move one small pile of stuff to another bare spot a few feet away. Hours later, he'd lock the door and walk away grumbling. This would happen monthly. The last time he tried this, he was in there for 4 hours. I went to check on his progress and to offer him lunch. I found him standing in the dark near the door, stark still, and just staring at the chaos before him. Nothing had been touched. I asked him what he'd been doing all this time. He said, "Nothing. I don't know where to start." That was my wake up call. I was on the phone to our Primary doc the following Monday. He failed the basic cognitive test pretty spectacularly.

Joe C.

I began to acknowledge there was something going on with DW in late 2013, looking back there where two actions that really puzzled me that I dismissed but now know were early warning signs.

The first had to do with composting, my wife was an avid gardener all her adult life and always had a compost bin for any vegetable/plant matter. In August of 2011 when we had an extended power outage following Tropical Storm Irene during which I was away. Earlier that month DW & I had gone blueberry picking and the freezer was loaded with berries. When I came home after a few days of no power she told me she had to bury all the blueberries because they were going bad. I was confused as to why they needed to be buried rather than composted so I asked her to show me where she buried them. She buried them right in back of her compost bin. When I asked why she just didn’t put them in the compost and she said she never thought of doing that.

The second happen in spring of 2012 and had to do with spelling. DW was always an excellent speller and had been a secretary for and engineering group since before desktop computers when secretary’s typed all the technical papers. One day she was writing a check to her daughter for one of the grandchildren’s school fundraiser and I noticed she misspelled her daughter’s first name. I pointed out the misspelling  and she began to argue with me and her daughter that her spelling was correct and our spelling of the name was wrong.

Scooterr

November 22nd 2021 three days before Thanksgiving. I was at work, and at the time I was calling her frequently at less 10 times in a 8hr shift just checking on her, On this particular call, I could hear in her voice something was not quite right, I left immediately. When I got home I found her in the kitchen holding forty dollars. I asked her, "baby is everything ok are you good?" She looked at me with these dead eyes, handed me the money and said, "here this is for your baby." Frist I thought she was talking about my motorcycle , and  I call all the girls in our family baby so I asked, "which baby are you talking about." She responded, "your baby daughter that you have." Well we've been married forty yrs. I know she hasn't had a baby in thirty some odd yrs. and I've never cheated on her. So I informed her, "baby I don't have a daughter we only have the two boys who are grown." She looked at me with the same dead eyes and said, "you don't I thought you had a daughter." I lost it, I mean I went to my knees lost it. One month later I left my job to be a full time caregiver and it's been a slow and consistent downward spiral. Good question Ed.

GothicGremlin

After I moved my sister Peggy to memory care, I called her close friends to let them know where she was. Her ex-boss told me that Peggy had started to exhibit signs as far back as 2010, but because she was so young (she was about 50 then), her boss didn't think for a moment that it was Alzheimer's. So there's that.

I'd seen small things starting around 2013 or so - misplaced keys, her driver's license, small items, but I never thought anything about it.

Two dramatic things happened on the same day in very early 2018. I  was wrapping up my dad's estate, and we needed to deal with some bonds, so I needed Peggy to come with me to the bank.  I was still living in San Francisco then, and she'd been to our apartment many, many times over the 20+ years that we lived there. We were to meet at the apartment, and then take MUNI to the bank. But this time she parked waaaaaaaay away, down by the ball park, no where near me. Eventually I tracked her down and we went to the bank. But - she couldn't sign her name on the document. It was the "g" in her name. She could get as far as P-E-G, but she couldn't get that second G out. After much time, we eventually got it.

Then, we had to go find her car. It was in a parking garage somewhere in the city. She described the cars parked in the lot as being parked "linearly", but she had no idea where it was. She was so apathetic about it. She said, "well, I guess it's going to be towed and I'll have to buy a new car." Which was weird. And we hadn't even started looking for it yet.   Five hours later we found it, and it was parallel parked in the lot. 

IWBH1990

My DW's short term memory was a little spotty for a while at age 64, but I didn't worry too much about it as two of her sisters both older had some memory issues and were otherwise functioning fine (both later diagnosed with dementia).     I was first floored when just before her 65th birthday we went to pick up our oldest son at the airport for a visit, and she told our son that she had brought "this nice friend of hers" (me) with her to the airport help pick him up. She was diagnosed with EOAD a few months later.

Crkddy

Mine was two-part.  First, I was talking to DW about the upcoming holidays (2017).   We got on the subject of her brother, and she asked me how I knew her brother.  We had been married 35 years at that time.  Of course I thought this was very strange, but we both chalked it up to menopause.  Then a few weeks later, I mentioned our sons coming home, and she had no recollection of having sons.  I realized then that something was definitely wrong.  Three months later she was diagnosed with EO at age 55.

Paris20

For me, two things happened, both related to driving. Our friends were spending a few days with us. We were on our way to the local mall. DH forgot where we were going after five minutes in the car. Then he forgot how to go there. The other incident involved a trip to a city an hour from home. My husband got his PhD there and knew that city in detail. We were going toward the highway to take us home, something we did a hundred times. Suddenly, I realized DH missed the entrance to the highway. I pointed it out. He had no idea where that entrance was. I knew then that we were in big trouble.

ElCy

My DH had no idea he had a second throat surgery for his cancer….

KathyF1

My DH has the typical memory loss but what is different (I think-?) is the delusions. And years ago before the memory loss was an issue, he would speak of occurrences that he was convinced were true. He spoke of a dream that he was sure was reality where he spent time in heaven. There were many similar stories- all very early in our marriage (we’ve only been married 11 years) and honestly I feared I had married a “crazy” man. Now I believe it was dementia. But the memory issues came along later. Now his symptoms are typical Alzheimer’s, but I believe he may have a combination of Alzheimer’s and vascular dementia.

Care4Mom2

This past December, I realized things will never be the same. My DH was to plug in 6 Christmas decorations. I found him standing out front just looking. I asked what was wrong. He said that he knows what needs to be done (plug the decorations into an extension cord), but he didn’t know how to do it.

JoseyWales

So many little signs for years before the one I'm about to share. 

The first really big one - DH, DS and I were at the Chicago airport in 2015. He went through security in a different line than DS and me. The security person was trying to get him to open his computer case - he couldn't understand what she was asking. She started yelling at him. I could see him from across the way, and he kept looking at me and looked about to cry. He finally figured it out.
We got to the gate, I put all of our boarding passes and IDs in my carry-on. I left the carry-on with DH while DS and I went off to get drinks to take on the plane. They started boarding the plane very early. DH was afraid he couldn't wait for us, so he took both carry-on bags and got on the airplane. With all our boarding passes and IDs. And his phone was off. We got back a few minutes later, and I had no way to get on the plane. We had to wait until the plan was about to take off for them to figure out we weren't on the plane, and then they printed DS and me new boarding passes. I was pretty worried for a while that we wouldn't get on the plane. 

DH was 51. The doctors told me he didn't have a problem. It was another year before anyone would say he probably had dementia.

Last Dance

 My first startling experience was when she had to go to the bathroom, she went to the closet and opened the door, she thought that was the bath room. She had to ask me where it was, we have lived here for 32 years

Buggsroo

My husband and I both had a number of cats, he would obsess about them, feeding them, letting them out on the catio etc. He had to see them before he could go to bed, he wouldn’t go unless he had seen them. Cats hide sometimes so this ritual turned into a trip to hell every night. I remember thinking at the time, what the hell why was he so obsessed with where the cats were. That started around three years ago, he still will ask me where our two are, and if they are outside on the catio, then he will bug me until they come inside.

DJnAZ

My wife was a skilled writer and Internet content developer. She routinely wrote 3-4 1,500 word articles per week that included sourcing multiple photo images. She worked directly with several online content suppliers and their editors and had been doing this since 2015. Sometime in late 2018 I noticed an article she was working on had a confusing headline. I just assumed she was busy and got a few words out of context.

By mid 2019 she frequently got re-writes from editors. I knew something was wrong when I saw a story she was working on had been returned for a re-write. Not only were words out of place, many were jumbled and had nothing to do with images she was describing. A few months later she stopped writing.

Slightly over two years after an initial diagnosis of MCI and a subsequent diagnosis this year of expressive and receptive aphasia, she has trouble signing her name. Any type of communication with her now is virtually impossible.

Pat6177

My DH had been showing symptoms for a bit. But in maybe 2019, I was putting dinner on the table and had dinner rolls, which I didn’t do often. He picked up the roll and said, “What do I do with this?” Then he quickly said “Never mind, I’ll just watch you”. I was stunned that he didn’t recognize something as common as a dinner roll. And wondered how much he was covering up by just doing what I did.

Crushed

What a fascinating collection and especially the striking number of Early (young) onset cases.

Interesting mix of  memory and executive functioning deficits. I can certainly trace  DW's  cognitive problems to 2009.  Her last truly original piece of creative work was 2008.   In February 2010 she acted as the emergency  physician for a passenger who fainted on a flight from Narita Japan to Washington. She was uncertain what to do.  Fortunately he had a problem that I was familiar with from my work and our scuba diving and I told her to pump him full of Oxygen. They did and she sat with him for the rest of the flight.  It should have been a big red flag but I missed it.  

2010  Failed clock drawing  MCI diagnosis
2011  Unreliable on directions  
2012   Alzheimer's diagnosis  Last trip on her own. Last day of "work"
2013    Told to stop driving  very clingy came to all my classes.  last email she sent
2014    Last visit with neurologist.  I was told not to leave her alone 

2015  Could no longer load or set up camera (life long photographer)

2016   Last trip to South Africa (Kruger) Beginning of Mirror self misidentification 

2017   Last family trip (Lake Louise Canada) Could not remember names of grand children or sons in law.  wandering and psychosis became very bad    Memory care from October 2017

2018   Lost all special connection to me.  

   

Davegrant

For us, this journey began in 2016. This was the year I was retiring which was not related to the changes with my DW. The changes were so subtle that it took me several years to fully understand what was happening. The initial changes were in short term memory, suspicion and a gradual withdrawal from events outside the home. I was in the kitchen one day when she was preparing a dish for supper, and she stopped in the middle of it. I noticed and said, "what the matter" and she said, "I don't know what to do next". This was a familiar meal that she had made many times before. She asked me to finish and she went on to do something else in the kitchen. This event struck me as odd at the time and from that time on the meal preparation moved from her to me. Again the process was gradual both in her not preparing the meals and in me learning how to cook meals. She also I learned suffers from anosognosia so that contributed to my confusion  about this disease.

Kenzie56

Hi Ed, mine was a few years ago when I found a duffle bag full of cash. I asked him what this was and he told me that he was saving the money to help take care of his mother (who was in MC). Seems every time he went to the grocery store, he cashed $20 - $50 over the amount and stashed the rest. I had asked him for a couple years why he was spending so much at the grocery store...this was an ongoing issue and he could never tell me why. When I counted the money, he had collected 8 thousand plus dollars.  It was great to find the money - but very embarrassing to go to the bank with a duffle bag full of cash. I felt like a bank robber. Shortly after that he thought I was one of several wives he had - then the car accident was the icing on the cake...quite a summer.

Midwest Gal

Of course sitting in on the first neuro testing was a real kick in the pants, but one night we were camping.  My DH went to use the shower house.  He didn't come back for over an hour.  I figured that since he loves to visit that he came across some camping group to chat with.  Finally when he showed up he said that it had gotten dark when he came out of the shower house and had no idea where he was so he just sat on the bench waiting.  He finally asked someone to show him where to go.  We were camped a very short distance from the shower house with only a few people at the park.  My DH has led hunting groups in the back country and has always had a great feel for his surroundings.  I felt terrible that he was left over there.  We have been at this game for close to 10 years.  It has been a very slow progression so when something new hits it can really surprise you.  Like going to a buffet and having him bring the pizza back to the table in his hands/no plate when at times he can seem fairly normal..

David J

There were so many events that floored me, but this was most disturbing: After her MCI diagnosis, we were seeing many doctors and getting many scans and tests. My wife kept track of this by laying the appointment cards out on her desk. I kept track of these same appointments on a calendar, also on her desk. One day she came to me with the appointment cards and asked me to help her figure them out. She wanted to see all her appointments in one place. I showed her the calendar, but she could not understand what it meant.  Month, day, time? It was all meaningless to her. She repeatedly asked me to explain, and I tried. She finally accepted that I would take her to all the appointments at the right times.

Pam BH

Ed, great thread and exercises my memory cells.  Lots of things since then but the very first time it hit me that dementia is different than what my incorrect perception was of a PWD was with a dead battery.  DH was Mr. Fixit.  No matter what it was he'd fix it.  He even had a word he made up for how he fixed something when he didn't exactly know how it happened - skimtion.  The car battery died and we got the golf cart ready to jump the car battery and he had no idea how to do it.  That convinced his son who was holding out hope.  In the same week he "fixed" a brand new pressure washer that didn't need fixing and now wouldn't work. We bought a new pressure washer. Same thing. He "fixed" that one too.  We have two brand new pressure washers that won't work. Then the delusions and hallucinations started.