I don't believe forgetfulness is the first sign of AD. I routinely lose my car in the parking lot & forget why I walked into the bedroom, and I don't have AD. I think it is subtle personality changes--or maybe not so subtle. People said things to me, asked me why DH said or did this or that. I got annoyed and said, 'don't ask me, ask him.' I didn't see anything wrong, it's only in hindsight that I do, decades later. Here's my story:

I now believe he always had AD, even in his 20's, I just did not recognize it. But there were personality changes that could be attributed to other things--like Korea. In his 40's and 50' I dismissed things that bothered me, found legitimate reasons why he'd behave the way he did--he was otherwise functioning well in his business, altho his partner was known to complain--but of what? Finally took him to doc when he was 63/64 & asked children who said they'd noticed things for several years. They wouldn't have been as aware because they always knew him as he was until his late 50's when they were adults and noticed.

So, what's your story? Try to go back as far as possible. What did you miss or dismiss? You aren't perfectly normal on Monday & get DX'd with AD on Tuesday. It has to have been there--simmering--for how long?

I don't even know where to start. I can think back to so many times when DH reaction to a situation was not right. Getting mad at the wrong time. Once getting mad at DD who had us over to dinner. She had made some kind of fancy chicken. He was mad that that was not what he wanted and walked out of the house this was over 15 years ago. It was a long time before we were asked over again.

He would only go places, do things, that we had always done. At some point about 20 years ago, we stopped doing anything new. And the list of places we could go got smaller and smaller.

He would get angry at me at the drop of a hat. That started about 20 or so years ago too. And would stay made for the rest of the day. He would say things that just did not ad up. Got so angry at me when I did not "let" him buy new carpet. We could not afford new carpet. He stayed mad for days.

Get so angry at me for carrying out a plan we had both agreed on. Leaving me to wonder what I did wrong.

Telling me a fence post needed to be replaced, then not telling where the post was. Leaving me to walk the fence line looking for the broken post.

So many odd and crazy making things!

Good night, I could go on and on.

Lloyd's I think began with telling stories over and over. That was as early as 1995. Then he went through this thing with his balance not long after that. Then in early 2000's, his speech began to deteriorate. It seemed like he knew exactly what he wanted to say but could no longer find the words. Then about 2004 he was working with his cousin laying cement pads for cell towers. He just walked in the wet cement and no sooner was it repaired then he walked in it again. Bob came home and said there was something wrong with Lloyd and I began to wonder. His ability to talk was steadily declining. About October 2008 I noticed he couldn't tie his shoes anymore, dial a telephone, or work the TV remote. I made an appt. with his PCP and he referred me to a neurologist. Couldn't get in there until January of 2009. He really went down after my mom died in October of 2008. They were such buddies. I worked as a manager for an inventory company and was out of town a lot and she was alone so they spent a lot of time together...going out to lunch and him taking her where she needed to go. He was dxd in January 2009 and it has been downhill ever since. All he can do now is walk and that is iffy some days. I think that is why he paces all day long. He is even getting spider varicose veins from being on his feet so much. It's like he knows it is the last thing he can do on his own and he refuses to sit down and rest. He lost patience with the younger grandchildren about 2006. Evan was born in 2002 and Lloyd adored him. When Kamden turned 2 in 2006, he was so mean to her she would tell me "Papaw jackass". (My bad influence. Every time he annoyed me I would call him jackass.) Our youngest grandchild Elijah is now 2 and he torments Lloyd. He loves to get Grandpa fired up so Lloyd will chase him. I really have to watch. Lloyd picked him up by the back of his shirt last night...poor baby was just hanging there until we rescued him. He has gotten so mean lately so I feed him, take him to the bathroom, give him his meds, do basic hygiene and that is about it. I just let him roam around the house. If he is good, I will take him for a ride or to visit his parents or cousin...using childlocks when necessary. Sometimes we will walk up and down our street.

Our story is different. I recognized that DH had Learning Disabilities when we met in Feb. 1974. I'd hung with and studied with Students learning to ID LDs in the classroom, while finishing my MLS. It wasn't until 1987 that I was finally able to get him tested (he wanted to learn to read). Dx was multiple Learning Disabilities for which there were no teaching methods. Family stories indicated that he was also tempermental--understandable when perceptions are impaired. In 1988, he had a Mental Breakown--Dx =Schizo-Affective Disorder. Basically that was an inability to recieve and intepret input from the environment accurately coupled with responses inapproperiate to the message.
This last Spring, as I sorted and cleaned in preparation for moving, I came across a 2 page letter I'd sent to his Dr. in early 2004 describing his on going problems, prior to our next appointment. I held in my hand 2 pages of Dementia behaviors. It wasn't picked up on. After a med problem starting in early 2005, monitored until it repeated in August 2006, he was finally admitted for a med adjustment,. The Drs. decided to verify exactly what was going on and then do the adjustments, Dx: VaD--already starting Stage 5.
Because of the previous 2 mental conditions, I'll never know how long he actually had active Vad, but I'm sure it was more than the 8 years before I lost him in July.

First, Dr. Rosenthberg (neuropsychologist) writes that personality changes are usually noted before any memory problems in Alz.

My case is FTD. Major changes downhill in 2007, drug changes helped immensely in Jan 2008. Dxin. June 2009 1 year after a bicycle accident, so dx did not follow normal sequence of events. But she started seeing a psych for depression in 1995 and even in late 1980s suffered from severe anxiety and surges of anger and bad decisions. So can't say what is personality, psychiatric problems or dementia.

In Oct. of 2003, I noticed DH was losing things - lots more than he ever had - his glasses, wallet, whatever. He knew it too and was very frustrated about it. We got through the holidays, then went to FL where his son, who is a neurologist, was vacationing. The trip down was terrible, he lost his wallet a dozen times! I asked his son to observe him while we were there and he did and before we left, we all had a talk and agreed to see our doctor when we got home. We continued further to So. FL to see my son and several times while there, DH lost it, had melt-downs, etc. It was a terrible, terrible vacation for us. His DX was MCI and he was given Aricept, morning and night. He had hallucinations, terrible dreams, and other side effects. I called our PCP, his son and the Aricept help line. Everyone's advice was to only give him Aricept in the mornings - 10 mg. We did, and he was much better. He stayed on a plateau for about 3 years, then started the downward slide and then was DX'd with ALZ and they prescribed Namenda, which he took until July of 2010, when we took him off both Aricept and Namenda. Saw no difference after he was off them. But things were spriraling downward, and after trying to travel some, I gave that up. He is probably some of Stage 4, 5 and 6 right now. It varies daily. But he is not incontinent, still showers with my supervision, can shave-sometimes, although I mostly do it; has finally settled into day care a few hours a week,where he "works". Mostly he is sweet natured, has never been violent, but this week he did take 3 expensive clocks off the walls and took them apart and ruined them! His hobby before AD was working on clocks!

Carosi, Lloyd could not read either. He quit school in his junior year and went to work in the steel mill. His mother was also illiterate. He has another brother who cannot read at all, another who can read some and one who is ok. I used to get so angry with his mom because I thought she should have wanted better for her kids. Lloyd's neuro said that illiteracy had not impacted his AD. I was always of the mind "use it or lose it". My mother was a first grade school teacher. She so wanted to teach him, but he was so ashamed. I finally took him to the library where someone helped him one on one. Poor thing grew up with no bedtime stories, no Bible stories...I just cannot imagine. He was tested at the library and in the beginning they could not even gauge what his reading level was.

I asked my children what they thought. Independently they all answered pretty much the same-difficult to differentiate bad behavior from a brain disorder. I know-not much help. I do believe for us it began insidiously many years before we had heard of dementia.

Everyone thought he had strokes, but there was no evidence of that when tested for strokes. He was at a friend's house one day in 2004 and had an episode while working under a car . His buddy's wife (DR. Jan, no not really) called and said he had a stroke. I asked where he was and she said on his way home...DUH! I asked why she would let him drive home after having a stroke and got no answer. Stupid, STUPID woman!!! She, of course, notified the rest of his family that he had a stroke and his mother swears it's true because she said it. His mom was present when Lloyd was in ICU after a seizure and going into respiratory arrest in 2011 and the staff MD came in and asked if he had any strokes. I said he had been tested and there was no evidence and his mother went nuts...swore I was wrong and oh, yes, he did!

In the case of DH, it was decades. For years he seemed very absent-minded, distracted, and forgetful. But looking back now, it was more a case of when didn't he show signs of this, than when did it begin.

In the mid 1970's, when we were working different shifts, he would go off to work and leave the front door standing open. He would stop at an intersection—where there was no stop sign—and carefully look both ways. He would say he was just being careful. And then the signs got worse and worse. By the early 1990's, he was having trouble at work. He kept telling me that there was something wrong with his brain even back then.

The last five years before diagnosis (in 2003) were a nightmare. He was verbally abusive, threatened me a couple of times, had very odd behavior to other people, and was just generally very different from the loving husband I was used to. For two or three years before diagnosis, we went to doctor after doctor, including neurologists and a whole day of neuropsych testing. They said he was depressed. (Oh, how I wish my educated-about-dementia self could go back in time and talk to all those doctors! I'd give them a talking-to they wouldn't soon forget.)

In a way, it was almost a relief when he was finally diagnosed. By that time we both knew that something was seriously wrong. We just never thought dementia was what it was. He was only 54 when he was finally diagnosed.

I started this to verify my own belief that AD starts decades before we realize it. As I said, it is NOT just an old man's disease. So many strange things that we just blow off--almost daily for 16 to 18 years! Who ever thinks it's a brain disease--I certainly didn't--maybe 30 years! I had a 60th b.d. party for DH, didn't notice anything wrong, everyone was having a great time. But when I saw the video a few days later, I was stunned. His behavior was all over the place, but no one noticed in all the partying. I was more annoyed with him than anything else--all I'd done to have this nice party and he was--well, he was--what? Another time we were on vacation & showing the video to an adult niece, she said, 'What's wrong with uncle?' She'd known him since she was born, now she saw something different, something the rest of us in the same video didn't notice. Really odd, so impossible to explain. This has been eye-opening but my experience with the medical field tells me that they will continue to dismiss it as anecdotal. I always say that anecdotal is valid. They don't see what we see.

I was on the brink of divorcing my wife due to mood swings, personality changes, irresponsibilty when she diagnosed with AD. A good 2-3 years before she was diagnosed. I feel kind of bad about it, thought we were just changing and growing apart at the age of 55. AD explains all the problems that she had. Now I love her more than ever and it is too late for her to realize it. She thinks of me as a father figure rather than a husband. I think there probably are alot of divorces due to AD, before they know the diagnosis. There should be more publicity on this disease, telling people about the symptoms and what to watch for.

So true Mary. All involved M.D.s, including a 2 neurologists and a psychiatrist were pushing away from looking at Alz as a realistic possibility, whereas I had been furtively reading "Alzheimer's for Dummies" in Barnes & Noble for a few years before we finally got someone who saw it.

I have considered whether he has had some disability on this order most of his life. He tells me about some things he did as a child that I can't comprehend how anyone would do.. Things bordering on being mean. But not hurting anyone - unless you would call sticking your foot out and tripping a football hero when the hero came back to the bench injured the hero. He is sweeter now than he has EVER been. 'Was mean to me many times as we endured our marriage.- but not physically hurtful. I was the one who smoothed things over. Many of you will criticize me for admitting to that I know. From reading on this wonderful blog though, I know for a fact that many of you have been in the same boat. Having those children was the most important thing I did in my life besides getting my education. They were a gift. I stayed for our family and I'm so glad I did. They are good people - really!!!!!!!!!!!!But it's time for him to make the journey so someone else can help him. It will happen probably next week. I pray that I will be able to attend a few stage plays and do a lot of reading and playing on my new digital piano after the placement. I know there will be many unexpected issues that will come up, but I've survived so far that I have hope. I also have a lot of sadness because my darling, unconditionally loving niece died. My faith sustains me.

midwestmn, My dH was not mean to others. But was often very unkind to me. But when he was nice, about 95% of the time it was great. It was the 5% that kept me questioning what was wrong. He would say hurtful things and then wonder why I was mad. Like he had no idea what was going on. Guess he did not know what was going on. Who knows.

I will not criticize you, if I have learned anything it is, I have not walked a mile in your shoes. We all do what we need to do when we are doing it.

And my DH is now kinder and sweeter, more like he was when we first got together.

Yes, we have had good days and some bad. When you boil it down to percentages , you realize nothing can be 100%. So probably as flawed human beings, it is too much to expect "pie in the sky". But it would have been fun to have had cake once in a while.