At what point do you say this illness starts??

Interesting question. My husband was officially diagnosed in February 2018, but I noticed changes in his personality in 2010. I tell people who ask that question both -- the official diagnosis date and when I first noticed changes. Btw, my husband passed away last year.

I agree with what others have said. As spouses, we know when something "isn't right" with our partners. As much as I didn't want to see it, little things added up, and became too upsetting to ignore.

I’ve always been frustrated when you read the first signs of Alzheimer’s is forget conversations, ask repetitive questions, etc. Definitely not what I experienced. My DH and I both noticed changes years before any of that started. Spouses most definitely see differences long before what they tell you to look for.

My husbands first symptom was he couldn’t handle noisy restaurants. We went out of town and had to go to 4 different restaurants before we found one that was quiet enough for my husband. The memory issues came later. That was 6 years before he was diagnosed. I have since read that for some people their brain can’t process what their senses are telling it and the person becomes upset and agitated and this can be one of the first signs that there is damage to the brain. He also had problems with his other senses. His senses were fine but his brain didn’t know how to interpret the information it was getting from his senses. He also complained about the smell of food cooking and light coming in through the windows.

TL;DR I think it's appropriate to start the clock with the onset of symptoms even if you only recognize them in hindsight.

Our situation was the opposite of what @mrahope described. My mom was too close to the situation to see the bigger picture-- the behaviors in the context of each other. She was like the frog in a pot set to boil who didn't realize the water was getting hot. Dad and I didn't get along and initially I suspect he knew he wasn't as sharp as he was and that I would recognize it and take action. I went to visit my parents about 6 times a year so the changes from one visit to the next were obvious to me. When I pointed it out to her, she defended his behavior as "a normal part of the aging process".

2005: I noticed obvious mood changes. He became less empathetic towards mom and could be vindictive. He started to lose his social filter around others.

2006: The conflated memories started around this time with him ascribing my aunt's and sister's bad behavior to me. He also became nastier with me and my family. Around this time, I started to make my visits solo.

2008: He didn't recognize an area in which his family lived and where he'd owned a business for 10 years.

I wasn't able to convince my mom to have him evaluated until fall of 2015 but it didn't happen because she developed an autoimmune liver failure during which dad was unable to be her advocate. Then he had a recurrence of prostate cancer which again derailed. In August 2016 he had an "episode" during a phone call with his brother who insisted he go to ER because he thought he was having a stroke. The resort area ER cleared him for stroke and gave him a referral to a neurologist scheduling 6 months out.

Mom's sister died while they were in the ER. I offered to travel to their home to stay with dad, but she wanted me to drive her because it was 450 miles away. When she returned, dad had had a psychotic episode and trashed the house thinking he killed someone. She drove him north and I met her at the state line to bring him into the ER of a major teaching hospital nearer me. He was admitted and given a provisional dx of dementia- Alzheimer's type. He had an evaluation following discharge with their memory center which gave him a mixed dementia diagnosis-- Alzheimer's and Wernicke-Korsakoff's. The doctor said he also had features of some vascular issues as well.

I feel he was well into the middle stages before he was finally diagnosed and he progressed quickly at that point passing in April 2018.

Yes! The first sign I noticed was that my husband wouldn't pack his suitcase for a business trip. That is something he had done himself for years. I ended up doing it so that he wouldn't be late for the plane. I was irritated at the time, thinking he was being lazy. But this kind of change continued for quite a while until there was no denying what was happening.

Iris, Thanks for sharing that. I have learned a lot from your posts.

I remember the day I knew for sure. We were taking a train ride with some friends and during the half way point the train stopped and we all had lunch. I went back inside the station for a minute and when I came out I saw my wife looking at me from the window of the train. There was something about the way she was looking at me from the window that was so profound I took a picture of her. That was in 2017 and I knew for sure my suspicions were correct.

I was aware of my DW mental decline for some time, but one day (at home) I walked into the room and saw that fear in her eyes when she looked at me. I'll never forget it. Luckily, so far it hasn't happened again in the last couple of years. She MAY not always know who I am, but currently seems to know I am someone to be trusted.

I still don't have a time/date that I can say I finally noticed when this started for her. AND, I've forgotten the date her doctor first said MCI. Guess it really doesn't matter, time just keeps moving on.

My wife tested her cognitive ability in 2016 after getting lost driving in places she has known well. Was diagnosed MCI. Then AD in 2018. I consider the AD diagnosis the starting point for average movement through phases and life expectancy. But it seems the averages are unreliable because everyone’s experience can be different. Unfortunately we cannot predict the pace. I suspect no longer handling ADL is a pretty clear indication that it’s gotten pretty serious. But it seems we won’t really know the end is nearer until there is little or no doubt.

Having this outlet is a big help, though, to compare experiences and find solutions to problems and challenges. So thank you all for such honest sharing.

I am so sorry for your loss.

In 2017, spring, my DA & I had to go to the social security office to change our bank address & I told him ahead of time why he had to go. We were sitting there maybe 15 min & he said “why are we here?” My DA was an engineer (retired in 2003) & had fantastic memory. All the things we did in our past years of marriage he could remember where we went, time of day, & even what the weather was like that day! My long term memory sucks so I would ask him “did I have a good time?” Anyway, I was shocked why he asked me that question. I didn’t notice anything else until November of that year that he was just not remembering things. I said to him he should go see our doctor & he said he’ll wait till next April when we get our physicals. He did pass the cognitive test they give & the doctor said to me let him know if he gets worse & will put him on medication, which he started in August. It’s 6 years now ALZ. Married 55 years, retired 21 years. We had a lot of good years together!