Looking back, did your parent have AD symptoms that you didn't pick up on before he/she was diagnosed?

Milesaway mentioned the dyslexia thing - my mother has always told me how she never liked reading, so I wonder if she has dyslexia just a bit. She was always good with numbers, helped her dad keep the books at his pharmacy, but she never read for enjoyment. Now that she suffers from homonymous hemianopsia (half the vision in both eyes is gone, prob due to a blood flow blockage to the optic nerve) she just does not read at all.

Virtualhorizon, my husband also demonstrates many of the the things you have mentioned. His worries about his other house drove me nuts for a while...now that he is on medication, a lot of these symptoms have subsided...not stopped, but at least it's not day after day. Funny you should mention about the prescription bottles; my husband did the same thing. He always had some "reason" to keep them...for little screws, nuts, etc., but he never used them; just collected them. When we moved, I would throw them out. Never thought of it as a symptom of AD or other dementia, but I sure do now. I think they should list the signs of AD/dementia like they do strokes, heart attacks, etc., everywhere and anywhere. Maybe more people would become aware of this disease save everyone a lot of grief down the road.

My husband's LBD was very sudden onset. From being "normal" he had a complete meltdown on June 6 2003. And "normal" was not just my opinion. He had had a neurological exam a month earlier and was pronounced "normal for a man his age."

But ...

After the sudden onset I found unpaid bills in the oddest places. I recall being annoyed with him for "not paying attention" and then forgetting what we were talking about. There were no obvious signs and none that showed up in an exam. But clearly the onset of the disease was not as "sudden" as it appeared.

And the "meltdown" was probably not so much a sudden acceleration of the dementia, but rather an inflammation in the brain, as it tried to fight off the foreign protein matter (Lewy Bodies).

Whew! Simple question, but very complex answer, I'm afraid.

balexander9, my husband was in a study also. I'm not awaiting the results of the autopsy.

My husband demonstrated most of the behaviors you are describing for many years: he used to read a lot but stopped. (I think that is due to a combination of his poor ability to concentrate together with the fact that he can't read fiction - or follow most movies plots these days - because he can't remember what happened earlier in the story.), became a serious hoarder for years (I am still getting rid of empty prescription bottles and boxes of bills and junk mail that are more than 10 years old, began to neglect his personal hygiene and often tended to "adopt" other people's stories as his own. He more recently forgets that he no longer owns a property that was sold years ago. The only behavior you mention that I haven't seen is the obsession with seasonal time changes. (My husband's neuropsychological evaluations, going back to 2008, indicate that he is related to person and place but not time.)

Thanks for everyone's answers to my question! Regarding the observation that he might have Dyslexia...I should probably restate what I said about my Dad not liking to read. For years and years, up to about 10 years ago, he didn't like to read, except possibly the sports page in the newspaper. Then suddenly about 10 years ago he began to read. He and my Mom went to the library about every three weeks and stocked up on books; he particularly liked westerns. He read voraciously for several years, then with the onset of Alzheimer's he went back to not wanting to read. He also wrote poetry for many years and still keeps a notebook full of it next to his chair, but he never reads that either. I'm not sure if the disease has taken away his interest or if he just doesn't have the ability to concentrate on reading anymore. He DOES worry that the people he hallucinates move the notebook around.

I've recently began writing down all of the early signs of AD that we might have missed because we weren't looking for the disease, along with all the symptoms he exhibits today. Its amazing what I've put down in my notebook. Just a few:

-- For years Dad would "adopt" stories that other people told about incidents that happened to them. He even adopted some incidents from my life! For instance, years ago, when I was in my teens, we lived on some acreage and had chickens. One afternoon I went to the coop to pick up eggs from the egg boxes; lying the length of the egg boxes was a snake...probably a bull snake or rat snake. Several years before Dad was diagnosed with AD, he began telling this story as though it happened to him!
-- Some time before Dad was diagnosed with AD, my Mom discovered that he'd been hoarding things that she didn't even know he had, or that she didn't know he still owned. He hoarded all of his empty prescription bottles. She found various items hoarded in boxes in the back of his closet, behind his clothes.
-- Mom discovered that though Dad was taking a shower every day, he wasn't cleaning himself. In places it looked like he almost had fungus growing on his skin. This was before his diagnosis.
-- He often thinks he has eaten his napkin, or tries to eat his napkin.
-- He is obsessed with "when the time is going to change" (Spring forward, Fall back), like whatever time it happens to be is not the correct time. Strangely enough his mother, who also suffered from AD before she died, was obsessed with this same thing for years.
-- A few weeks ago he asked me when I thought his hair would turn grey. Its been grey for 40 years. I asked him whether he ever looks in the mirror to see what he looks like. He wouldn't answer.
-- He complains that my Mom stays up until 1:00 in the morning watching TV, and that's why she's tired all the time. She tired from taking care of HIM! She goes to bed right after the weather at 10:15 PM. Dad would like her to go to bed at 8 PM or earlier.
-- He worries about a house he hasn't owned for 15 years. Today he wanted to make sure I'd indicated on his IRS tax forms the profit he and my Mom made when selling their house last year. I don't know where that comes from. He won't accept that he didn't sell a house last year, that he doesn't own a duplicate house, and that he doesn't have to worry about a house he used to own years ago.

I would suggest that anyone who has a parent, etc. suffering from AD or another dementia keep a notebook and write down symptoms, etc. You'll be surprised at what you discover...

Unfortunately, hindsight it is 20/20. As I look back over the past 5 years, I see all the signs that should have alerted me to his oncoming condition...BUT if his doctor's didn't see it, how was I to know the changes were due to dementia? They are supposed to be trained professionals, people who should recognize symptoms. If they didn't, how could I? Of course, my husband, like so many others with this condition, are very, very good at hiding their symptoms from "outsiders" who they only see once every 3 or 4 months. It's only we who see them 24/7 or even just weekly who notice the changes. No sense in beating ourselves up over it. What's past is past. Deal with what is now and what you know to be. That's what I'm trying to do.

For a couple of years before Mom's diagnosis of AD, I knew something was wrong. But she wouldn't see a doctor. Then one day she came into my room and said.."Do you know where my daughter is? I've been looking everywhere for her."
My heart was in my throat. So, it was time to MAKE her go to a doctor.

Looking back, I believe there were symptoms a least 5 years before. I mostly ignored them because they were few and very far between.

I think it is a long term brain disorder that morphs into dementia. I perceived Mother's detachment, irritability, and critical attitude since I was little. She was not nice, not emotionally there for us, no direction, just make sure you do your chores. Many here call it "narcissism." I second the Emotion. The only normal person was my wonderful but uneducated step-father, and he loved his bitchy trophy wife:(
The biggest clue was in 2006 when she accused the carpet cleaners of stealing her jewelry. Then after her last husband passed in September 2008, she got involved in an affair with Obama, and he was staying in the (un) basement. In California, we don't have basements. His daughters were very nice to her, but what to do abot Michelle? HMMMMM?

Responding to the post about thinking it was dyslexia.....I have a theory. I believe that a lot of these dementias have to do with people who are dyslexic, and and possibly have attention deficit disorder. Why? because after my mom was diagnosed with Alzheimers( will get back to her in a minute), and spending so much time at heri house helping out...I realized my dad has to be dyslexic. He was not a good reader...his spelling was atrocious, he mixed up the pronunciation of words that were similar, he would invert numbers, I swear he also had auditory processing disorder. You would tell him something and he would think you said something totally different....it might have SOUNDED like what he thought was said, but IT WASN'T what was said.He would be so confused! He also told me as a child, he would cut class so he didn't have to do presentations in front of the class. Very socially shy.As he aged, and mom got worse, the Dr. tried to say HE had dementia.He would start to wake up at night and go to the bathroom...but not in the bathroom. He would pee in a box, or the corner......and we blamed it on the CAT! Fast forward...both mom and dad are in a nursing home now. Once there, I insisted he have a sleep study done. Because I have sleep apnea....and so does my sister, I thought he had it too becasue of his behavior, his snoring, etc. Guess what?? It came back positive for severe sleep apnea! Here's the kicker...the pulmonologist at the sleep center reffused to have him titrated and fitted for a mask because he felt dad would not comply with keeping the mask on! Medicare would not cover the mask or machine then! So frustrating! So I asked the folks at the home if they could at least give him oxygen at night, and they are.He seems to be doing better.So...does he have Alzheimers, or not? Is it the effects of sleep apnea?

As for my mom....I did notice things like she would read out loud every sign we passed by while riding in the car. When she would right things....she would mispell the word, cross it out, rewrite it. She would babysit my nephew and have to pick him up from preschool. Once she rode right by her turn, and my 3 year old nephew told gramma she went the wrong way. When we would go somewhere, she "knew everyone". She would go up to people and say "I know you!" She would hug total strangers. She would go up to a table of diners and do the same thing. Would try and start up a conversation like the folks were her dear old friends. She would wear 2 or 3 rings on her finger, then wrap rubber bands around them. She would wrap it so tight her finger would turn blue! Eventually, dad asked me to take all the jewelry out of the house. She started using the moistened bath wipes and would put them back in the box and would use thenm over again. When I discovered she was doing this....I threw the box out. Half hour later they were sitting back in her bathroom. She went and dug threw the garbage and found them. When she went on a trip with my dad and aunt and uncle...she locked herself ina stall in the ladies room and could not remember how to unlock the door. I could go on and on...it is really sad. I also believe now that my mom has sleep apnea..because ever since I was young I remember hearing mom making this weird noise when she slept. Looking back, I think that is what it was. She also snored. So, I think if you have this for so many years and it goes undiagnosed....things happen. There is no oxygen getting to the brain. Or very little. Over time I think it destroys the brain....and there ya go...you now have ALZHEIMERS! That is my theory.

My husband's doctors first considered Lewy Body Dementia as a possible diagnosis for him a couple of years ago and are not treating him for AD. He is part of the Alzheimer's/Dementia study at Mount Sinai Hospital and will therefore have an autopsy to determine the nature of his dementia at that time. In the meantime, there really isn't anything that we could be doing differently.

Great topic to keep caregivers (or up-and-coming caregivers) on the lookout. There is so much information online now regarding unrecognized symptoms. Try "5 signs of Alzheimer's that you might not be aware of" on Assisted Living Today. I, too, had family members notice issues like the ones mentioned here with my Grandfather. I was too young at the time, but encourage my family to talk about it now, so we can all be more aware.

balexander9: check out the LBDA website (Lewy Body Dementia Assoc). I think you'll find some interesting info there about your husband's condition. Although my husband was diagnosed with Parkinson's about a year and a half ago and Alzheimer's more recently, now the doctor is saying he more likely has Lewy Body Dementia and is doing some tests very soon to confirm his theory. Please note that the previous diagnosis were not made by this doctor so he is not changing his mind. LBD/Parkinsonism are very often misdiagnosed, and as everyone knows, none of these can truly be confirmed until autopsy. The treatments are different than for AD, so the more tests that can be done to better determine the proper diagnosis, the better the treatment will be and the better life for our loved ones. There is no such thing as an exact science; it's all a guessing game, kind of like predicting the weather! However, when the diagnosis is wrong 50% of the time, everyone suffers!

Mom called one day that she couldn't put the car in reverse. Another time she let us know she couldn't find the windshield wipers.

Oh yes, as I look back at Mo's behavior I realize things were wrong a long time ago. In 1972, we left the car running in the street with the drivers side door open. She just jumped out and started walking. I had just glanced out the window and looked into the next block and saw the car there, running. Yes in 1972. So she has had it for 40+years.

Yes. My husband never had a great memory, suffered from depression for decades and always tended to be disorganized so I tended to explain away a lot of the earlier symptoms he was having. He was diagnosed in 2008 with Dementia NOS ("Not Otherwise Specified" - as in we don't know what the cause it) and Parkinsonism. Looking back, I can see that it is likely that he has had dementia for well over 10 years. The doctors who are treating him don't believe that my husband has Alzheimer's Disease (although this cannot be determined for sure until autopsy) and his dementia presented somewhat differently than it does with AD in that the first symptom to emerge was personality changes (paranoia, compulsive hoarding), followed by Parkinson's-like gait problems with noticeable memory problems being the last symptom to become obvious. I am sure that denial accounts for some of my failure to recognize the nature of the problem earlier than I did but initially the symptoms were more like a very gradual increase in behaviors that have always been a part of my husband's emotional make-up so it was hard to tell. It is a very insidious disorder.

Yes, 10 years eariler. Mom was out running errands in town and she told me when she came to an intersection she familiar with, she didn't know where she was for a few seconds. About 5-6 years ago, she was boiling water and forgot about it. When she discovered the pot on the stove, the water had boiled out. When she lifted it from the stove, the bottom melted off and fell on the kitchen floor melting the linoleum. Mom was diagnosed in Nov. of 2010 when she started having confusion. I knew these could be early signs because dad also had Alzheimer's, he passed away in 2003. Just because an elderly person forgets a word does not mean dementia. A lot of it is age related memory loss and is normal. When the confusion starts, get them checked out.

As I look back over the past 5 years, and maybe even before, I am very aware NOW of the tell-tale signs of Alzheimer's my husband displayed. No one...not me, not his doctors, not his neurologists...NO ONE said anything to me. consequently, he made some very costly errors in judgment when it came to buying cars, "toys", houses, etc. We now live with the consequences because I thought his decisions were just his normal selfishness and "no one will ever treat me any better than I treat myself" attitude. The more I would point out the error of his thinking, the more he dug in his heels and did what he wanted. So, if you notice things which are not necessarily out of character but seem stronger or to be escalating, talk to the doctor. Get your loved one examined. Document behavior and save yourself...and your loved one...a lot of tears and sorrow. This disease cannot be stopped, but it can be slowed down. Early treatment is the key. My husband's doctor is having a very difficult time piecing together everything that has gone on because it's been so long and we have moved to a different state...because I let my sick husband convince me that it was best for both of us. Not so. Now neither of us has any friends and we are in deep financial trouble. I can't find a job because I'm over 60, and even though I have mostly up-to-date skills, no one wants to hire me. They don't tell me that, but they aren't fooling me. I've been on both sides of the desk, and I always chose experience because these folks have a proven track record. Very frustrating.

Dear Virtualhorizon,
YES, YES, and many more yes's!! Now that I look back, I can honestly say that it was a very, very slow process. It took years before Mom was finally diagnosed properly with AD. Since its been years I cannot remember everything that I noticed coming on. At first I just thought that Mom was acting up, getting mad and staying mad and moody on purpose and for nothing, so I just ignored her when she acted like that. Gosh, do I regret that now. She was like that a real long time. Then really, really slowly, I noticed different symptoms coming up but I still didn't connect the dots. I was in my own world and just didn't see it coming. Only until years later did I tell sis and bro that I think that something is "wrong" with Mom, but still couldn't connect the dots and to this day I feel guilty and very bad about it. They were in more denial than I was. They didn't even believe me. Because every time they would come over they would say, "nothing is wrong with Mom, she's acting normal, she remembers things really well." So sure, they would see her for less than one hour or for only a couple of hours, so of course they didn't believe me cause they didn't spend any length of time with her as I did. I emailed and emailed them constantly about it but I would be ignored. So I finally told them, yeah, you see her what, once a week? 2-3x a month? I see her every day and I know something is wrong so could the two of you get off your butts and believe me and we got to do something about this? I know there is no such thing as a perfect CG even though we try, but the guilty and regretful feelings remain.
Your question is a very wise one to ask because I believe that most people cannot see it coming because its such a slow and progressive disease. Then Mom had to have a colonoscopy, and that sent it from a scale of 2 to 100. It just exploded overnight. Then the surgery made it go over the edge. The stress of all she had to go through made the disease overwhelm me, it went up like the speed of light. It's very hard, because, after all, who has the experience with being around people with oncoming or ongoing AD if you've never seen it before in anyone, especially family?
And so, it just advanced to the point that I had to hire CG's to help me out cause Mom could not be at home alone and never left alone any more. I was caring for an adult baby. She still knew who I was and loved me so much, but I was terribly hurt cause I was losing the loving lady that I once knew.
Mom is gone now and the pain is still there. It's always there, every day, just the degree changes. Hope this helps. God bless you.

YES! I noticed little things years before, but mom was so young. She was "officially" diagnosed at 58, but looking back there were things in the EOAD checklist well back into her early 40s, maybe even late 30s. She was terrible with money, in fact my parents divorced over that in her early 40s. She was terrible with direction, and terrible impulse control. She was paranoid about everything. At 61 she started wandering and since I'm a "sandwhich" generation girl who works f/t and raising my kids, we had to place her in a secure memory unit for 24 hour supervision. It such a sad disease, and moves so fast. :( Almost a year later now she still knows me, but her concept of time is so messed up she doesnt want me to visit more than 15 mins or so at a time. Its so very sad.

Has there ever been any association made between ALZ and Dyslexia? Virtual Horizon's father sounds like he might have had some form of Dyslexia- the not wanting to read, confusing directions and left/right, etc. Usually undiagnosed dyslexics are very intelligent and good at hiding their symtoms, as are elderly with beginning Alz. I know my mom is somewhat dyslexic and she has recently been diagnosed with ALZ - Just a thought....

my husband was diagnosed w/AD in 2010. I had known the was "something" wrong in 1997 when he was only 55. having served 33 years in the military, he was two years from retiring. during those two years I noticed that his day to day memory was challenged. but he compensated by making lists.
when we did retire, I mentioned this to our primary care doctor on base and was told it is probably just a little depression because he has retired.

so to answer your question, yes I noticed there was something wrong. I only wish the doctors we had visited for help had noticed and it hadn't taken 10 years to be diagnosed.

Yes, I have noticed things now. For instance he never wanted to make a decision. He always made me do it. He struggled with the checkbook which eventually led to showing me that there was something wrong. That went on for at least 5 years before I finally realized we had $5000 in bounced checks. And he used to make this funny sound with his lips "book-oop-a-doop" Now he does it all the time when he is stressed and when he it trying to get to sleep at night. I want to scream at him, but I don't. He goes to sleep pretty quickly every night.

Yes!! My parents have had AD since 1995 when they lost my brother. They didn't get help and just shut down. I did not know anything about this disease until a formal diagnosis was made in 2010. They are now each living in a secure memory care unit an hour away from each other. After being married for 60 years they don't know where they are or why they are there. I had to get a Conservatorship two years ago to get them the care they need. I live in a different state yet, there are some amazing caregivers for them at each facility.