I read a post a long time ago on a thread where someone described how her husband years before every even thinking about alzheimers or being diagnosed with Alzheimer's exhibited some behaviours that were totally out of character. Weird things. His boss had mentioned the same thing to her noticing behaviours that were way out of character. She wondered if this was the beginning.
In our case it was the second marrage for both of us Lisa was in mid 30's no kids and I was a single parent 41 with two boys 7 and 10. Within about 18 months we were living together and needless to say a big adjustment for all of us It wasen't easy. However we made it and have had 25 good years together. Lisa is a very loving and giving person but sometimes there were behaviours that were totally out of character, hard to understand, no reasoning just off the wall. I know a lot of it could have been the situation but since reading that post I wonder if this could have been the beginning. Is it possible that alzheimers pops it's head up every once in awhile years earlier than behaviours become obvious? Has anyone else had this type of experience and in hindsight wondered? This has stuck with me ever since I read that post.
Some of us had noticed that something was wrong about 20 years before the actual diagnosis. It would the odd, strange behaviour that didn't make sense, and then all would fine until the next "blank" look and baffling episode.
I am sure it started at least 15 years before the dx. Maybe more. I remember my DH screaming at me about speeding. I told him to slow down and he started in about he could go as fast as he wanted to. Screaming at me about giving him a spoon instead of a fork for beef stew. So many things, I started doubting my sanity. He could fly into a rage over the strangest thing.
DH had an absent minded professor kind of way about him. I always said I did not know when his personality ended and the Alzheimers started.
I think that even though he was still very competent, he had symptoms as much as 10 yrs before diagnosis. It was only after his official diagnosis that I began to understand in hindsight some of the obsessive behaviors he exhibited. The very subtle things just progressed slowly over the years until we were faced with a situation of 'hey, something's really wrong here!" What were once just little quirks in his behaviors and habits became full blown issues.
Ron, Yes, I think many of us look back and see signs that not all was well, even long ago. But, of course, we will never know for sure. I cannot bear to think of our happy years together at the same time I think about the symptoms of Alzheimer's, so I have wrapped a bow around that box of memories, so they will not be contaminated by this disease.
Yes, that's a good way to put it, Myrtle. Like others have posted, I started to see signs of early Alzheimers around 14 years before diagnosis...but it was all so subtle, didn't affect life much, and I easily could have been wrong. I think I've posted before somewhere that I made a point of attending conferences on Early Alzheimers symptoms in the line of my work...I hoped I would be proven wrong, but the conferences just highlighted that I was right. With Larry, it was such a long, slow progression that we had many good times in the earlier years...and I didn't fret too much, because I figured he would die of a heart attack anyway. That didn't happen, of course. It was mostly Al Z. Heimer that destroyed his final years. It seems odd to me now in retrospect...but I had married someone 25 years older, and had just made a decision that I would bite the bullet and just deal with whatever health issues cropped up. I kept my job, my friends, and my interests, and just enjoyed him as much as possible as the long, slow downward spiral ran its course. It was the last couple of years, and particularly the last four months, that really turned life upside down and became incredibly difficult.
We were diagnosed July 2008. Her behaviour changed dramatically when we moved cities in late 2006. I thought she got a depression because she had just retired after 27 years with the same umbrella company. I pushed her to retire because in 2005 was the first year she seemed to struggle a bit with her objectives at work. It was early in 2005 that I first noticed her driving was just a bit off in new places when she had to drive me downtown for my eye operation (detached retina). Her sister says she noticed it before then but could never come up with a concrete example.
For me oddness first showed up in 2003. She had watched me have a small fit at the kitchen sink one day and the next day when I mentioned it she didn't know what I was talking about. I mentioned it again in conversation about a week later and she again didn't have any memory of it. She would never have done that otherwise and it caused problems between us.
I've regretted that the disease never occurred to me, but then I realized that once we had our diagnosis there was never hope again. At least in those early years we didn't know. Once we had the diagnosis, we pretended we didn't because we didn't talk about it. Less than two years later Dianne didn't understand this anymore anyway.
I found her notebook with her writing reminding herself to do better at where the hands of the clock are. I threw it out. Like Myrtle, I select where I herd the memories.
Dianne was born in 1951. I'm a year older. We had Early Onset AD. We had a specialist for geriatric diseases following us and she said 8-12 years from the onset. Dianne died in early 2015 which was 12 years after some odd behaviour showed up.
@myrtle: "I have wrapped a bow around that box of memories, so they will not be contaminated by this disease."
My wife's dementia had a very clear starting point, so I don't have anything special to add here. But the comment above is so well expressed that I wanted to thank you, myrtle. I've tried to do the same thing. It's difficult, trying not to remember the past, as a cushion against the present. The alternative is worse, though, because recent experiences tend to push out the memories of how my wife used to be. In the end maybe I'll have the chance to put the pieces back together again.
Robert, (off topic) I have to thank you for that ambition thread. I've been working on this painting since then and it's the first thing I've done after my wife passed. At first I was dead inside and kept making myself do the work - but it has opened me up and I'm a day or two from starting to put on the oils. It was your thread that triggered that. Thank you.
Wolf said, ". . . once we had our diagnosis there was never hope again." Exactly. Diagnosis = Death of Hope.
That's why I don't understand why the Alz. Assn. tries to get people to recognize the "early warning signs." Doesn't this organization understand the destructive effect of the a diagnosis itself? Yes, at some point we must face the music but urging people to do so at an early stage, without offering corresponding treatment, is just cruel. The absurdity of this approach is evidenced by a poster the Alz. Assn. put up on the bulletin board outside the "secure dementia unit" in my husband's facility. This poster urges people to recognize the early warning signs listed on the poster. Do they think that the people visiting this unit are unaware of the disease? Instead of posting signs about how to spot the early signs of the disease, the Alz. Assn. should post a sign over every one of the doors to their offices: "Abandon hope, all ye who enter here."
Myrtle I don't necessarily agree with you on this one. For me yes the diagnosis was devastating but it also helped me to understand and respond better to what we were dealing with. Prior to that I did not understand and would get angry not respond appropriately to behaviours, " what do you mean I have showed you over and over again how to use the remote". Prior to getting the diagnosis our doctor asked me, do you really want to know what is going on, at that point I realized it was me That needed the diagnosis. It was me that needed to know so I knew what we were dealing with. Once we got over the shock then ok we started to live with it and do what we could while we could. I could better deal with the situation. It has just been the last year when things have gotten really tough.
This discussion brings back so many memories of strange behavior before diagnosis. I have to tell you about a couple of them.
About 15 years ago (several years before Helen was diagnosed With vascular dementia) My doctor sent me to see a specialist and my Dear Helen insisted on going with me. We waited about ten minutes for him in his office and when he came in he introduced himself and shook both of our hands. He happened to be a rather small oriental man and the first words that came out of Helen's mouth was, "Are you sure you're a doctor?... you look like a little kid"..... Naturally I was embarrassed, but as it turned out, it was no big deal to Dr. Woo. He just smiled and said "I AM... a little kid, a thirty-two year old little kid". Of course that is just a sample of early dementia, but why do I remember it word for word after 15 years?.....
This also happened about 15 years ago. Every Tuesday evening we would meet at Los Jaritos Mexican restaurant with a group of friends from our Lions Club for a nice meal and social. We had been doing this for years and were good friends with everyone there. One of the waiters, Aristeo, was his name, was always quite friendly with Helen and he would sometimes sing to her. This particular night he was singing "Bessame Mucho" to her and inserting the word "ajhora" into the song. One of our friends, Richard Gonzales, explained to Helen that the words he was singing meant "Give me a kiss" and that Ajhora meant "Right now" .......So Helen said OK and gave Aristeo a nice Kiss.... Then Richard said "How about me?" so she gave him a kiss. Then all the guys at our table were saying "How about me?" so she went around the table and kissed each one. And then that wasn't the end of it. Some fellow at a nearby table said "How about me", so of course she went over and gave him a kiss. The only guy who didn't get a kiss was me.........I forgot to say "How about me?" At that time we all thought that it was just Helen's way of having fun, but now as I look back on it, I think it was another sign of early dementia.
Unlike many of you, my husband was diagnosed pretty early in the disease. I told him to go to the doctor to find out why he was not hearing what I said and had to keep repeating. We had a real bad experience with the managers at an RV park we workamped at in Vero Beach in 2006. He had never been berated or yelled at like they did. He was never the same after that. I thought it was depression but I think that experienced kind of triggered the disease. After diagnosis in 2008 he continued to work for another 2 years as we traveled around the country. I want to believe that the actions he did in 1984 when he was diagnosed with 'detached personality disorder' was actually a sign of what was to come because that is how he got after the incident in Vero Beach - detached. Of course, now he is mostly detached from emotions/feelings all the time.
Hi Ron, You are not the only one who will disagree with me on this. In your case, I can certainly see the wisdom of getting a diagnosis - if I remember correctly, your wife was in her fifties at diagnosis, making it less likely that you would recognize the real culprit and, more important, making it more likely that her symptoms were attributable to some other cause - low vitamin B, a brain tumor, etc. - that might be treatable.
In our case, I was already pretty sure what was wrong, since my father had this disease. My husband's PCP said it sounded like Alz. to her but suggested that I think twice about putting energy into getting a formal diagnosis at that time, since there was nothing that could be done. If I had taken her advice, I might have had another six months to a year of hope. But Oh! No! I just could not leave it alone and had to go full steam ahead. No denial for me! So we went ahead with the scan and the cognitive testing and got the diagnosis. As the song says, that was the day the music died.
I think the main reason they push for early diagnosis is for two reasons: some conditions that cause cognitive problems are treatable and to get legal paperwork in order. They like to also push the drugs which we all know does nothing except the small number it helps their cognition for a while, but the disease still rages on. My husband was diagnosed on the basis of the neuropsych testing and family history. The Ct and MRI did not show more than normal aging loss.
I am guessing my wife showed signed of dementia around 14 years prior to her dx. By that time I was walking on egg shells at home (actually doing that much longer). This is when she thought she had clinical depression and started seeing a psychiatrist. Which helped for a while. Her family was worried about her (and me and our son) years prior to the dx.
Another important reason to recognize the early symptoms is job loss due to poor work performance. EO PWDs may get fired for poor performance when they may be entitled to early retirement and SSDI.
At least 4 years before DX, DH would become very upset if he could not find his day planner and he started calling it his brain.
Claude was electrocuted in 1991 and had to have open heart surgery as a result. From then on I started noticing a few things. In 2001 he started having TIAs and after each one he deteriorated more and more. He was formally dx'd in 2003. In 2005 he started showing symptoms of Lewy Body so I started researching. I took my research to the neurologist. He wouldn't listen to me, told me I was stupid, not a doctor etc., he was the doctor and he said it was alzheimers. He really got my Irish up, we had words and we never went back to him. His PCP handled his care from then on.
I don't come here very often because it feels like picking on a scab so the wound never heals. So much of what you are saying is true. Strange behaviours pop up and then go away. Dementia never occurred to me even though I was a home health nurse.As far as early diagnosis-just gives you a longer time to grieve. 5-5-10 was the date it ended and I buried Bill on Mothers Day with the family all with me.
In the NOVA program that aired on PBS a few weeks ago, they said that scientists had discovered that AD started in people as much as 20 years before they showed any symptoms. So if they ever find an effective treatment, it might have to be given very early, maybe even before any symptoms show.
I started taking David to doctors two years before he was diagnosed. The nerThen when he forgot about several thousand bucks he had stashed, I rologist started him on aricept because of my observations for 2 years, and my insistence that he had IT. I turned out to be right. David would never miss a St Louis ballgame if it was telivized if all was well.
Then when he forgot about several thousand bucks he had stashed,that confirmed it for me. Tests never were definitive. I did want to know, all I heard was , get started on meds if you have Alz from research>
My husband started having symptoms at around age 58-59. He started having anxiety attacks because of his stressful job as a Project Manager of a large IT project. He just couldn't remember anything. His doctor told him it was just stress and take some time off. He did. Then he had to quit work at age 60, because it was becoming too stressful. I knew something was wrong and spent the next year fighting with doctors, until finally he was referred to the Memory Disorder Clinic where he was diagnosed with early onset Alzheimer's. That was 8 years ago.
I felt knowing as soon as possible helped us. I was planning on divorce because of DH crazy behavior. Once I found out what was going on and I knew what was wrong. That changed everything. Also he was able to get SSDI for himself and our youngest DD. Without the dx none of that would have been possible. Also we had time to get legal affairs in order and things like that before he became unable to take care of important things. Being dx at 58 makes it harder. He was still working, and his employer noticed the changes. So the job and income were on the line at the time of dx. You can only cover it for so long. And only having a little less than 4 years from dx to his passing we needed to know.