I use a pseudonym here, but I've pointed to other writing I've done, so I don't have any real anonymity, in case someone wanted to find out who I am. I've written elsewhere without using my real name or any obvious clues about myself, but as you say we all have our own stories, and anyone who knows us well would be able to tell.

I do think about what I say and how it might affect others' opinions of me. Ordinarily I wouldn't worry too much about that, but of course none of us here really lead ordinary lives. My online social connections are important to me. I don't try to hide what I think, but there's always the chance of being misunderstood, so I try to be careful.

I need to add that without being able to tell it like it was, and without the supportive feedback I got from particularly Divvi and Mary (Red) and so many other others too many to list, who, with expertise, wisdom and caring —got me through it. It was a safe place for me.

I just try not to post anything on the forums that I would not say to anyone's face if we were sitting on the porch having a cup of coffee together. I don't really believe in online relationships, but this forum is the one exception that proves the rule. It has honestly been the one thing that has gotten me through the devastation of the past few years. I don't remember what my first post was, but I believe it was Divvi who responded first with wisdom and kindness...and the wisdom, kindness, and common sense from this group just kept rolling on. There are three or four on here that I probably could identify in "real life" if I wanted to, but I would not dream of encroaching on their privacy without asking permission first. Mim and I have gotten together in "real life"...we live minutes apart...and I have to say that I felt from day one having coffee at Panera that I had found a friend. I will let her tell her own story, of course, but I have to say that her grace and courage under daunting circumstances are an inspiration and an example for us all.

It is my goal these days to try and help others through the fires, as others have helped me. And yes, (this is for you, Margaret)--a glass of wine can be very helpful! I also recommend chocolate--for medicinal purposes only, of course. : D

In terms of privacy, I guess the only thing that would bother me would be if someone went back to my old posts of a couple years ago and saw the very personal things I posted about Larry's incontinence, inappropriate behavior, etc. I feel that that could infringe on the dignity of his memory. But I don't think that is likely to happen, so I don't really worry about it. Maybe after his death I should have continued to call him "DH" instead of his real name, but I just feel it is more respectful and cherishes his memory to call him "Larry." It's not like I'm posting his surname and social security number, and there are a lot of "Larrys" out there.

In the late 1980s, a column in the “Lifestyle” section of our local newspaper described a couple in a restaurant eating in silence. The columnist questioned what kind of a sad, empty marriage this couple must have had if they could not carry on even a basic conversation with each other. A few weeks later, the paper printed a long piece that had been submitted by a reader in response to that column. Nowadays, it's common for people to share their personal stories but then it was not, so the piece was published anonymously to protect the privacy of the writer.

The writer said that she and her husband might have been the couple described by the columnist, for they went out to eat many times and rarely spoke. She explained that her husband was unable to carry on a conversation because he had Alzheimer’s disease. She recounted the history of their long happy marriage and the fun and adventures they had shared together and with their children. She described her husband’s intelligence, his quiet wit, his interest in hearing what others had to say, and his uncanny ability to choose the perfect word to sum up a situation. She said all that was gone now, for the man struggled with even basic vocabulary. She explained what was known about Alzheimer's (it was not as commonly known by the public as it is today) and how it affected people and changed their lives.

I was stunned. The writer was describing my family! I immediately called one of my sisters and read the piece to her. After picking herself up off the floor, she agreed - our mother was the author of this article. Although I was tempted to say, Mom! How could you?” I calmed myself down and called her to congratulate her for telling a truthful story and being a published author. No one ever mentioned this to me but I suppose my parents’ contemporaries might have recognized our family in the piece.

There are four of us. I am the oldest.

I need a safe place because I could be in serious trouble. That is if I was expected to do anything. I've been in trouble before like the time I mooned that double decker Amtrack train on a company teambuilding expedition down the Colorado river and was informed in no uncertain terms the next morning in the breakfast lineup that I was no longer in the running for the promotion I had applied for.

Well then. That wasn't as exciting as the time I got up to get a drink from the cottage and found a big black bear between me and the cottage. "Now what?" I remember thinking hoping to not pee myself. He didn't even look at me and instead meandered off around the cottage which I immediately ran into panting with the door shut behind me. Dianne looked up from her magazine wondering what the heck I was doing now which we got out of the way in a hurry. "Bear." "Where?" "There." I pointed through the very solid looking walls to the side of the cottage Smokey went around.

That wasn't as scary as the time I blanked out on stage in front of some 500 people in the middle of a speech and had the strangest dream. In it I found myself in front of a room full of people staring at me and I'll never forget that second I realized it wasn't a nightmare. I was really here and all those people were really there and they really were staring at me because I was supposed to be doing something. The hairs on the back of my neck stood straight out and the hairs on the back of my hairs stood straight out too because that was a shock and a half.

Even that wasn't as scary as being partially crucified as it came to be known. We were playing guns down the back lane and I jumped over a fence and knew right away something was terribly wrong. I looked down and saw a nail coming out through my sneaker and by deductive reasoning also through my foot. My friends helped me hobble back up the lane and into our backyard, the short board firmly attached to the bottom of my shoe. When my mother came out because of the yelling, she began screaming until we pulled that board off of my foot when it was my turn. I've always had a special affinity with the crucifixes I see after that. It hurts. I know.

That wasn't the scariest thing in my life. Neither were the months of police protection 24 hours because an x employee threatened to kill me. Neither was that night on Lake Huron in the Contessa 32 with three people huddled in the cabin refusing to come out while the skipper and I fought 9 foot waves all night during the week I was taking sailing lessons. When we finally struggled into Southampton, the police were there because we had been declared missing. We had to divert for hours towards Lake Superior riding up and down the water mountains so we could angle back or we would have been broadsided right away and the entire coast we would have ended up on was virtually uninhabited and lined with jagged rocks on a very black night. When I put up the storm sail, the entire front of the boat went under the water regularly where I had to hang on to the boat, the sail, and the line. I couldn't take too long either because working that tiller up and down those water mountains wore you out and the skipper and I had to alternate regularly and switch sides. One big mistake hour after hour after hour and there would almost certainly have been deaths.

That wasn't the scariest thing either. Nor was when I finally went back to the class where I thought the professor was retarded and knew I had to work now to catch up and when I sat down they handed out the midterm exams instead. I actually lived that dream in Ferris Bueller. I looked it over but there was no chance so I walked out a second time.

When I started this website, it was unheard of for any Alzheimer Spouse to speak the truth about what Alzheimer's Disease does to a marital relationship. I was confused, angry, and hysterical because I couldn't find ANYONE in my support group, online, on tv, in articles, who told how their spouse's personality changed, how they became strangers, about the hardships of being a caregiver to a spouse who was acting like a stranger.

In order to get such conversations started, I felt it was imperative that everyone's privacy was protected by using screen names, and me NEVER giving out anyone's email address without their written permission. I have kept to that strict policy for nine years, and I believe that is why we have been able to engage in such honest, thought provoking discussions that you will find nowhere else on the Internet. I am very proud of having been instrumental in bringing the truth about Alzheimer's Disease and marriage out in the open. I believe that simply knowing you are not alone in your thoughts and feelings have helped so many people cope. This could not have been accomplished without anonymity.

In the process, many of you found each other in spite of screen names, and lasting friendships have been formed, including meeting in person. Exposing your identities is up to you individually, but I will always keep these boards anonymous, so anyone can say whatever they need to say without fear of being recognized.

As it says in the Welcome section on the home page - you have come to a safe place.

joang*

People always ask me if I have a support group or if I meet with other people going through what we going through. I say no but I have friends that I can confide in but the best resource I have is a website for spouses of people with Alzheimer's. A place where everyone understands, a place that is safe to say or ask anything. It is truely A lifesaver while going through this journey. Thank you Joan.