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    • CommentAuthorAdmin
    • CommentTimeApr 2nd 2009 edited
    Good Morning Everyone,

    I went to bed early, got up late, and apparently missed all this "posting" and "striking" business. This is very important to me. The website is set up as a place for spouses to read, learn, and relate. In relating to what is written, they feel less alone and guilty. Some write often. Some prefer to just read. Some write only when they feel they have something to add that no one else has said. Some prefer not to post at all.

    You who are reading the message boards, do not see the E-MAILS I receive from many who prefer not to post. I want people to feel comfortable to read, write, e-mail, or whatever it is they need to do. Many do not have time to write - they just skim the posts.

    Those of you who write often - I am thrilled that you do so. Those of you who do not write often - I know you do what is best for you. Those of you who e-mail me - I try to acknowledge your e-mails.

    I urge everyone to do what is best for them. What is comfortable for one person is not necessarily comfortable for another. I want to make sure everyone feels they are getting from this site whatever they need.

    Please - if you want to talk about non-AD subjects, label the discussion - "Off topic".

    And please don't forget there is much more to this website than the message boards. The home page - - is updated with news and information daily. Blogs are sometimes every day, sometimes, every few days. But there is always something to see or read on the home page.

    Thanks to all.

    • CommentTimeApr 2nd 2009
    ((joan)) well said. Sometimes, it is just too much for me and I can't post and only lurk. Other times it is so painful, I can't even come here. Other times, you have all saved me when I thought all hope was lost. This forum and the home page, are a staple of my life. I would be lost without it! There just are not words that can express how greatly I appreciate you starting and maintaining this site. ((HUGS)) Nikki
    Ditto, ditto, Nikki
    • CommentAuthorKadee*
    • CommentTimeApr 2nd 2009
    Very well said Joan. As I have said in the past, this site has been a godsend to me. I really don't know where I would be had I not found it. I was so bitter that in my early 50's I was dealing with this dreadful disease & feeling sorry for myself.
    As Nikki said, we all post when we can and lurk when we can...and we could not survive this insidious disease without Joan's place!
    • CommentAuthoranitalynn
    • CommentTimeApr 2nd 2009
    Joan, thank you for your comments as they were needed. This place has also been my saving-grace and I am so drawn to it almost everyday. The last day or so has been disburbing since the last thing anyone of us need is a feeling of not doing what we are suppose to do. I wonder everyday if I'm doing enough or am I doing ok with all there is to do with my dh. I just want to come here and know it's ok to just be here and not be judged because I'm not doing enough.

    So again I say for several times now, you are an angel Joan and no words are adequate enough to say thank you for what you have done and what you do everyday here for all of us.
    • CommentAuthorJanet
    • CommentTimeApr 2nd 2009
    Absolutely! I agree with all of you. This site is very important to me. I'm sorry if I was overly negative on the other thread. My comments had nothing to do with whether or not I would continue to read and post or with whether I greatly appreciate all that Joan has done for us and will continue to offer to help her in any way I can. I love this site and don't want to see in-groups forming so that other feel excluded and less important whether they choose to post frequently or not.
    I am termorarily (really) out of anything to discuss so I went back to 2007 and brought some "old goodies" to the top for new imput. Enjoy. There are a lot of postings back a while that I think would be good to bring back to current discussions from newbies.
    Good idea, Imhor. When I first found this site I was trying, methodically, to go through and read all the threads. I never made it! As I recall, I got about halfway through and gave up, due to lack of time. I'm sure there's some good stuff buried there that I know nothing about.
    • CommentAuthorJanet
    • CommentTimeApr 2nd 2009
    Great idea! I'm sure there's lots that will be helpful in the old threads I've never gotten to.
    • CommentTimeApr 2nd 2009
    I'm one of the regulars, but these days I do more lurking than posting. And I don't lurk all of the threads because there are too many for me.

    When I was new here, I went all the way back to the beginning and even responded to posts that were well over two years old. So I'm a real second about looking back in time once in a while if you feel a strong need to read, and there is nothing new.
    I've been one of the regulars for about a year now but am not included in the "dirty dozen". I need the advice and support of the people who are further down the road than I am and from the ones who do research, like Sunshyne. There are also those who have worked and had experience in different fields who give such valuable advice and show much love and concern. Please don't strike...or even step aside for a while. We need you.

    I don't think the 12 people who do a lot of posting are forming their own little group and I sure wouldn't want them to do less posting. Actually, I think there are more than 12 who post regularly. Let's keep Joan's web site just a great big circle of loving, caring people who are all good friends...really you're family! Love you all.

    And Divvi, with all the caregiving and having to constantly watch DH, not to mention poop patrol, I personally thank you for taking time to help guide the rest of us through this maze.
    Well said, Dazed. I've only been on this site for about 6 months but it has been wonderful. Don't think I could go on without it now! Everyone has been so loving and caring to me when I've posted and it has been greatly appreciated. Thanks to you all.
    • CommentTimeApr 3rd 2009
    Dazed, oh yes!
      CommentAuthorchris r*
    • CommentTimeApr 3rd 2009
    I agree with the luking. Lots of time I just get time to read a few threads, maybe post, maybe not. Too many to read all of them. I love the site, and I feel so much better knowing you all are here. thanks
    • CommentAuthorKadee*
    • CommentTimeApr 5th 2009
    • CommentTimeJul 20th 2013
    I want to stress that I am in no way implying anything has remotely happened here that made me pull up this thread... it was simply the only existing thread that is relevant.....

    Sometime I worry and even have guilty feeling when I do not post to a thread. I want to express to our newer members that are hurting so badly now, if I personally do not post to your comments, it does not mean I don't care, I DO. I feel great empathy for all you are going through..... there are just times that I have given all I can give for the moment. Sometimes I can reflect back into the hell and sometimes it is just too painful for me to go back there. Please understand that this is not a reflection on you or your post.....
    • CommentTimeJul 20th 2013
    ((((group hug))))
    • CommentAuthorlulliebird
    • CommentTimeJul 20th 2013 edited
    Aww, Nicki....You should never feel guilty or worry that you don't post a reply to a thread. There are many posts I just can't reply to. That doesn't mean I don't care. I have read many posts and tears will roll down my face. I will feel so helpless that I can't personally reach out and give that dear one a personal hug to ease their pain. I understand---and I believe we all get that! Please don't feel you should apologize! (((((nikki hugs)))))
    • CommentAuthorMoon*
    • CommentTimeJul 20th 2013
    I have always been more of a "reader" than poster. I agree that I too often feel I should comment
    on someone's cry for help, but don't. I hope that those that do post will know that we "readers"
    do care about your troubles and pain even if we don't say so.
    (Nikki, you have been a huge help to many and should not stress over whether you post or not.)
    • CommentAuthorabby* 6/12
    • CommentTimeJul 20th 2013
    I have been thinking about this quite a bit lately. Recently there was a topic "dementia faces". I read it and was ready to respond; fingers literally over the keyboard. Then I read the responses. They were gentle, reassuring and supportive. My response was going to be what I had observed in my husband's face over the course of FTD.

    I realized that my response would have not been beneficial. There would not have been any reassurance in it.

    I also remember a post in the widow/widowers sticky where a poster commented that there were not that many posts and as I understood it, felt that this is because many had moved on. I have been disappointed in myself for what I have not accomplished, to put it another way, stayed stuck, but have not really felt that I had anything to contribute to that thread, for the most part.

    For some reason, I just hate the word "widow".
    Abby, I hate it too. But I find that I think of myself as a widow, even though Steve is alive. He is a little boy now and the husband I had has been gone for so long, so I must be a widow. Maybe using that term before his death will help me get used to it when it's official.
    Maybe we were all Mid-ows', before we became widows. Mid way on the way to widowhood. I'll never forget - will always reach out to those caregivers who are still on the journey. I can spot a person with Alzheimer's so easily now, and I always give a reassuring smile with a slight nod (that conveys "I understand") and they usually respond to me an expression of their appreciation. Recently, I was checking out at my doctor's office and a woman with her husband was checking out with the other clerk. When we got to the elevator, he was hesitating .. and I held the door for her. Oh how I remember the problems I had getting Foster to step into the 'closet' as he called it. When they got inside, I winked at her and she smiled and shook her head.. We communicated without saying a word. I held the door when we got to the ground floor and they got off first, and she turned and said "Thank You", and I said (softly) "Take care of yourself!"... A world of understanding was present between us.

    As I said, I will never ever forget. I am sure most of you do the same thing.