Excellent article. Of course, NOW I can look back and remember experiencing some of these signs but not understanding their significance. Staring was a big one. I would call him " lost in space" and was always telling him to pay attention. Not being able to produce sounds, stuttering and stammering was upsetting to him. I told him he was " just nervous". (Guilty about that) Empathy..he had none left. So many more signs..I could go on.

It's so important that the public be educated about signs other than memory. Maybe more attention and funding would be supported if the horrors of this disease were known.

Yes, yes, yes. I don't like calling AD a disease of forgetting, it terrifies people when they forget things normally, the walking into another room, forgetting a word, an appointment, someone's name--whatever. I've told countless people, 'NO, you do not have Alz.' I took my DH to a doctor in 1993, but I'd known for some time that 'something' was wrong. It never occurred to me that it was a brain disease. I had dragged him twice to marriage counselors, and each time I was told to divorce him while I was young enough to get another man. I didn't want another man, but eventually I'd come to realize that they did not recognize AD--no one talked about such things then, few even knew the word. They just saw that he might get worse and would not change back to the man I married. The symptoms were not much like those described in the article and I tried and tried to get to the bottom of things, and then realized that when I did get to the bottom, I fell right thru. There was nothing I recognized, but a wall I thought he'd built around himself that I could not climb over and he would not come out. I think the examples given, at least with my DH, are still a long way from the way changes occur, and likely differ from person to person anyway.

There was some staring, some picking at imaginary lint, the inability to give a simple direct answer, things misplaced, a wandering off while watching TV or reading, a change in his ability to the creative things he used to do or repair, a change in driving--but a brain disease--that never occurred to me. When I finally asked our children if they noticed anything about Dad, my daughter said, 'yes, for some time,' and our son said that he and the crew to our race car had been double checking everything he did, or found reason for him to do something else, again for a long time. But it was all so subtle, and then there were the times people would ask me, 'why did he say/do that?' Well, I didn't know why.

One can say that there were personality changes, but try to describe them, especially to others--including doctors--who don't see what we see, it is so easy to misdiagnose. So some progress is being made in what to look for, but I don't think it's there yet, except that AD is really simmering there for a long, long time, decades, before it comes raging out. I look forward to what others will write.

OMG I wish I had this information 10 or more years ago. Telling me "I can drive as fast as I want" when I asked him to slow down when driving over the speed limit. And accusing our 6 year old of having an "agenda" and being angry about it. So, so many strange things. And as many of you know I was heading towards divorce before the dx. I was just waiting for our youngest to turn 18. And after the dx no way would I have left him. He could not help being who he had become. I still had so much pain from the years of yelling and put downs. But that was not him, it was the AD.

Edit to ad, I had a Doctor friend tell me not to worry about forgetting where the keys are, worry about picking up the keys and not know what they are for.

Actually, memory loss was one of the first things I noticed…not being able to navigate in NYC anymore…and he was a retired NYC policeman. He was still driving, but to give just one example of many, he could not find his way through the Bronx down to the Whitestone Bridge and out to Long Island…a route he knew like the back of his hand. Or if we would take the train down and come out in Grand Central Station, he would just wander around in circles, totally unable to figure out which exit to take to get ourselves in the direction we were going--like to a relative's apartment that he should have been able to do in his sleep. It was scary and heartbreaking. (Freckle-faced midwestern me--I had to learn Manhattan thoroughly…it was so ironic that I had to navigate for us and take over the driving…when East Harlem born-and-raised Larry was getting lost in his own hometown.)

Other things, in retrospect: Difficulty finding the word he needed to say. Odd lapses of judgement in driving, like insisting on making a left turn out of a busy, difficult intersection with no traffic light--instead of going a block down through the neighborhood to come out of the intersection the easy, safe way under a traffic light. Running stop signs all the time if no traffic was coming. Passing stopped school buses with their red lights flashing. Thinking the last two examples were funny and clever…feeling that he could get away with it because he had been a policeman…when stopped by the police a couple times, he would show his PBA identification and avoid getting ticketed--but apparently was given some pretty sharp warnings. Another thing he did in grocery stores was to always take a few grapes or pistachios that were loose in a bin, and just eat them as we shopped. I always told him to stop that, and he would always laugh like he thought he was very clever.

We had always slept in a full-size bed, which I know many people would think was way too small. (I am medium-sized, but he was tall and sturdily-built.) But we were always comfortable--had our way of curling up around each other and seemed to have plenty of room. Then it gradually seemed like he forgot I was there, and slept all spread out as though he were the only one in the bed. I used to scrunch up on the side, barely able to move, until we ended up switching to the other, queen-size bed. Then it was OK--it gave enough room. But it hurt that he seemed to forget about me…it had been so cosy in the old days. (Kind of a stupid example, I guess…but I'm trying to think of everything.)

He started saving everything, too, and stacking them neatly in the basement: The foil trays from coffeecakes, plastic grocery bags, any old battery that was changed out from a clock or a flashlight, all the baseballs that ended up in our yard from a Little League field across the street, any and all broken or damaged items from the house. He had always kept a neat, clean basement workshop area, but as time went by it started to look more and more like the bottom of a gerbil cage.

I first noticed that "something was not right" when we were involved in a church meeting in small groups in the fall of 2006 and his comments in the group were bizarre. I doubt anyone else noticed but I did especially given that he always had the words and always ready for an educated comment on anything. The other thing I noticed was that he seemed uninterested in doing anything, would just lay on the couch and not want to do things that he had done before. By 2008 he was repeating things constantly and that was the year he got the diagnosis. Also in 2008 he had bowel obstruction surgery and while there, one of the nurses said to me that she thought he had dementia and I should get it checked out.

As I read Elizabeth's post, it sounded just like my DH. Sometimes sleeping sideways in the bed and, oh yes, the basement. He saved everything. Never getting rid of anything. We have broken radios, heaters, flashlights, toys, bicycles, hedge trimmers, leaf blowers, 4 broken chain saws, and so many other things that he thought he may fix or do something with some day. He told me several times that when he got off from work, he couldn't remember how to get home. I just laughed and said "Well, you must have remembered because here you are." Things like this went on for 4 years before I could admit that something terrible was wrong and got him diagnosed. You know what they say about hindsight. How could I not have known?

Just reading these posts makes me think that so many of us have had so many experiences in common. Not that we wanted to go through these things, but seeing what others have posted makes me see some common threads. At least none of us were really alone--although it seemed like it at the time. As I've said a time or two--this website is a lifesaver. I wish I had found it sooner.

Our house had beautiful perennial flower beds and mature, flowering trees and shrubs, also at one time a beautifully landscaped goldfish pond.(The previous owners were gardeners--I just tried to maintain what they had developed.) Larry destroyed a lot of that. While I was at work, he would go out and cut things down. It would break my heart to come home and see what he had done. Thankfully, over the years that he was becoming more frail and ditsy, I was able to work with the lawn mower guys--who were not really landscapers--to get them to do some actual planting, weeding, and landscaping, so that once in a while passersby would still stop and take pictures. In Larry's defense, I did realize over the years that he preferred a formal yard that looked more like a French or Italian garden. And ours was billowy, colorful…the "English country garden" look. He would say, "It looked messy." when I came home and found gorgeous plantings cut up into firewood or in yard waste bags. I used to call him Edward Scissorhands. I guess the silver lining when he could not get out into the yard anymore was that it started to look nice again. He had completely chopped down the beautiful, fragrant honeysuckle that used to climb up and over the screened porch…but it re-seeded itself and grew all up and over the chain-link fence around the pool. If any of you have been to the Roosevelt home in Hyde Park, NY, and seen that yellow honeysuckle that grows on the front wall of FDR's house--ours was that same type of honeysuckle. Anyway, as yhouniey asked…yes, we went through a period of him cutting everything--not inside, but in the yard.

We've not been through a cutting stage but he has torn things for years...mail, boxes, clothing, you name it. And he throws things...food, books, blocks, whatever.

Larry kept a beautiful yard in the earlier years. His ongoing destruction of it as time went by was dementia-related. At first you could say maybe he just had different ideas than I did--later you could say he was exhibiting questionable judgement---and past a certain point it was just so obvious that we were dealing with dementia in the yard. Taking away his riding mower was more of a problem than taking away the car.

The honeysuckle reseeding itself somehow clear across the yard onto the pool fence was just plain luck. But I used to love it when it hung over the screened porch--I looked forward to that fragrance just outside the door every spring. I remember that when I came home from work and found it chopped up in the yard, I could not sleep for two nights. I could not find the plant anywhere else to purchase it. (Couldn't very well steal a cutting from the front wall of Franklin Roosevelt's home.) So when it started growing by the pool fence (maybe a bird carried the seeds or something) I was so happy. And it did well there. On a hot, humid day the whole yard smelled heavenly.

I did not get mad at Larry about what he did to the yard. I could see that he was on that slippery slope where his judgements were getting worse and worse. Like he would get on the ride-a-mower and mow our yard several times, practically killing the grass--but would only mow on one side of the house…and leave the other side long. And then he would go over into two or three of the neighbors' yards and mow their grass…which was not appreciated. Of course they had their own arrangements and did not need him doing that. And he would burn his legs on the mower. Fortunately, he was not capable of maintaining it, and it became rather junky. I had the lawn mower company pick it up for "repair", and in talking about the mower with Larry, the guys could see the situation very clearly. They were very worried about his safety, and made a plan with me that they would tell him it could not be repaired…I told them to just make it go away…and they did. That was when I finally was able to pay a crew to mow the lawn. They were also incredibly kind and understanding. They made a plan with me that they would pretend they could not speak English (these guys were Hispanic) whenever Larry came out and tried to direct them. It worked fine for a number of years, and they also were able to replace some of what he had cut down. Yes, the yard was an Alzheimers casualty.

It's hard to believe after reading all my anguished posts over the past months, but when I first married Larry I used to joke to my friends that I felt like Cinderella who finally got to go to the ball. He never could cook--he could barely fix himself a cup of tea--but he literally did everything else. I thought I had died and gone to heaven because my life became so easy. (I don't count my job of course--I always worked full-time.) Other than cooking dinner every night, I literally didn't have to do anything else. Weekends were a relaxing joy. I remember one day early in the marriage he was complaining because the sheets weren't ironed. He said, "I don't think I can sleep on sheets that aren't ironed." Oh boy-- I thought to myself that the honeymoon was definitely over, and this guy was going to be high maintenance. Then I came home from work to find him upstairs ironing all the sheets!!! Needless to say, I was touched--practically started to cry. But I didn't want him doing that, so I went out and bought new sheets in a cotton/polyester blend so no one had to iron sheets!

As you said…my, how things can change…I look back now with a smile and a tear.

For a good ten yrs before the diagnosis of ALzheimers my DH exhibited some very wierd behavior.there was lots of arguing. I could not talk to him about any of it. He was in defensive mode , and would say I was the one with wrong behavior. We saw four counsellors , with little improvement. We were advised to divorce, from a Christian counselor! But I hung in there, I loved my husband and didn't want to divorce. I tried harder, but things got worse. The anxiety, blow ups over nothing, obsessive behavior regarding some things, and yes hoarding old junk, among other things continued. It started noticing confusion , with simple things. Then, memory loss. This man was a St. Louis Cardinal baseball fanatic. He NEVER missed a game on tv, never. Then he did. He was also very knowledgeable about our finances. He had turned it over to me earlier because it made him so anxious. My word, not his. Then he forgot about a 5000 dollar savings he had. We needed wen we bought a car. These two things confirmed in my mind something was very wrong. I started taking him to doctors, him pretty unwillingly. It took two and a half yrs to get a dx of Alz. After he aced many mental exams and fooled several doctors. He is now stage 6 double incontinent and as helpless as a baby. Seven yrs since dx. I knew what it was, I'm a RN, I had to retire early wen he could no longer stay by himself.