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    • CommentAuthormyrtle*
    • CommentTimeJan 28th 2018 edited
     
    This site was down for most of the day. This has happened several times now. We've also been hit by a lot of spam. In addition, several of have wanted to send checks to help support the site financially, but mail sent to the old address has been returned by the postal service and we don't know what the new address is, or even if there is one. Also, the lack of a moderator and of any promotion of the site has resulted in a much smaller membership. Because of all this and in recognition of the fact that nothing lasts forever, several of us have been concerned that one of these days, this site will disappear. Although I would miss it, and miss all of you, that loss would not devastate me since I'm no longer a caregiver. However, until almost a year ago, this group was my lifeline. I don't know how I would have functioned without it. Others have also said as much. Because of that, many of us worry about where those who are still in the trenches would go if the Alzheimer's Spouse site disappeared. These thoughts have been incorporated into other threads, but I think our concerns are valid enough that they warrant a separate thread, so here it is.

    I suggest that we hope for the best and keep posting here, but just in case, also check out other sites and let us know about them on this thread. I hope that moving to another site will not be necessary, but if it is, at least there would be somewhere to go and maybe even see old friends there.

    One suggestion that was raised earlier was a site operated by the Alzheimer's Association. I wrote it down at the time and just confirmed the address. It is called ALZ Connected and has a discussion group called "Spouse and Partner Caregivers." It can be found at alzconnected.org.


    P.S. Sorry for the typo in the title of this discussion. There is no way to correct it.
  1.  
    Thanks, myrtle. I just printed your message. I couldn't remember where the previous posts had suggested we go. Now I have the info posted on my fridge.
    • CommentAuthorNicky
    • CommentTimeJan 29th 2018
     
    Thank you myrtle for the info. Yesterday when I thought our website was down permanently I joined the ALZ Connected website. I was busy yesterday, so I didn't have much time to spend on that website, but I found it more difficult to navigate than this one. I read some of their posts & we can certainly all identify with them. It's similar to this one - people post with their struggles & the others answer offering their support. A good website to join - just need a little of time to get use to it.
    • CommentAuthorRodstar43
    • CommentTimeJan 29th 2018 edited
     
    why dont we take our own forum name on the alz connected spouses amd partners partners forum.
    suject or what ever if is called for old members of this site. TAS or Joan Syndrome something. where we could find each other. . use same user name
    just an idea.
  2.  
    Thanks, Myrtle. I've written it down, too. If this website disappears permanently, I will visit the other one looking for our friends from here at Joan's. I am another one who could function without our website these days, although I would miss the forum friends. But in the days when I was struggling with the caregiving--and later, just drowning in the miseries of the aftermath--I would have never made it without this website. I want to be available to help others as need be...so alzconnected.org in the group Spouse and Partner Caregivers is where I will look for everybody if the situation arises.
    • CommentAuthorNicky
    • CommentTimeJan 29th 2018
     
    Rodstar, I agree. When I joined the other website I used my name. Since there was already a "Nicky", I just added the number "9" - that worked. So there I'm known as Nicky9.
    • CommentAuthorCarolVT
    • CommentTimeJan 29th 2018
     
    Excellent idea, Rodstar43. And if your name is already in use there, just follow Nicky and add a 9. I'd become CarolVT9, for example. (But I think I'm already signed up as CarolVT.) It might take contacting the administrators at Alzheimers Connected to get a special forum though. Elizabeth?
    • CommentAuthorNicky
    • CommentTimeJan 29th 2018
     
    I used the number 9 because it's my house number. I wanted a number I could identify with - I didn't want to forget my own username.
  3.  
    OK, I signed up on the ALZConnect website, too. I just used the same username, like this: elizabeth922014. So you will all know it is me. But the only thing I could find in terms of a Spouse/Partner place was a chatroom. There didn't seem to be threads like these here at Joan's. I don't really "get" chatrooms--have never used them. If anybody finds a place on the new website that we should all head to--if need be--please let us all know.
  4.  
    The ALZConnect website has several discussion forums very similar to this one (although not, unfortunately, as easy to search.)

    https://www.alzconnected.org/discussion.aspx

    The forum for spouses/partners is the second one on the list.
    • CommentAuthorRodstar43
    • CommentTimeJan 29th 2018
     
    i had troubles, evidently i had registered before, i want to keep same user name got locked out, emailed them
    • CommentAuthorNicky
    • CommentTimeJan 29th 2018
     
    Elizabeth, on the ALZConnect website, go to "Message Boards" situated on the top, that will take you to a title "Forum", there you will find "Spouse or Partner Caregiver Forum". There are threads similar to what we have here. I haven't posted anything there.
  5.  
    Just go to https://www.alzconnected.org/discussion.aspx?f=2147485438&g=topics and then bookmark the site so you can return there whenever you'd like. The Spouse Or Caregiver Forum seems to be quite active, but it's less convenient to use because, unlike Joan's message board, there's seemingly no way to know which threads and responses you've already read. I think I started on this forum in maybe 2008 before switching to Joan's forum in 2009 because it seemed a better fit.
    • CommentAuthorNicky
    • CommentTimeJan 29th 2018
     
    Thank you Gourdchipper for the info. I've put that link in my favourites & it's much easier to access now.
    • CommentAuthormyrtle*
    • CommentTimeJan 30th 2018
     
    Thanks for the instructions, Gourdchipper. I registered as myrtle*. I hope we will not have to move.
    • CommentAuthorRodstar43
    • CommentTimeJan 31st 2018
     
    I am slowly getting famailiar witfh the alzconnected.org web site for Just in case. I found a tab called group. So. i started one. I nameded it "TheAlzheimerspouse" an i think i stated something like a common tbread as Joan's freinds.
    check it out. maybe a common meeting place for old friends should the worse thing happen. Just a thought. My username is still rodstar43.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 31st 2018
     
    looks like you have to invite people. I am registered as rvgrandma8 which I did a couple years ago.
    • CommentAuthorCarolVT
    • CommentTimeFeb 1st 2018
     
    Rodstar43, is there a place at the group you started for you to invite people?
    • CommentAuthorRodstar43
    • CommentTimeFeb 1st 2018
     
    i will add the. user name that. you use one that site.for instance Charlotte will be rvgrandma8
    i will. go try that. charlotte tried put rvgrandm8
    •  
      CommentAuthorCharlotte
    • CommentTimeFeb 2nd 2018
     
    anyone here register with that Alz site under dovdov? I have a 'connection' request from them.
    • CommentAuthorNicky
    • CommentTimeFeb 2nd 2018
     
    No, I registered under Nicky9.
    • CommentAuthorRodstar43
    • CommentTimeFeb 3rd 2018
     
    Niky9 i tried something ele on the alxconnected.org web site. after refiseter sign in the go to message boards, the look for spouse. and partners caretakers, under that i created a typic Joans Friends recalibrating, go in

    it vvjust a regrouping place

    may ne will like it. just one idea. do not want to loose every
    • CommentAuthormariposa
    • CommentTime6 days ago edited
     
    In addition to losing connection with people we have shared this journey with, I think the archives of this site with all the posts going back to the beginning, would be terrible to lose. There has been such a wealth of experience shared here that is impossible to replace, and have been a most valuable resource for me since the beginning.
    • CommentAuthormariposa
    • CommentTime6 days ago edited
     
    Also, there seems to be some confusion by those posting on the Alz-connect site as to how to use it.

    The page to start is:
    https://www.alzconnected.org/discussion.aspx
    First you want to JOIN.
    Then you want to click on the spouse or partner caregiver forum and bookmark it:
    https://www.alzconnected.org/discussion.aspx?g=topics&f=2147485438

    Once you become a member you can post and get help just like this board. The post (Joan recalibrating) there to find other members from here is just a post, not a private group, appearing to & mystifying the thousand members there. That site is not set up to have private groups, and they discourage it. Read the comments from the moderator on that thread - some good explanation there.

    There is very good support and input on that board. I have been using it for almost a year, since this board had so many people drop off it. Whatever Joan decides to do, I hope she maintains the archive of posts here, and if this forum is continued it would be good to update it too, like the website was updated, to eliminate being greeted by "Stickys' and made more functional.
    •  
      CommentAuthormary75*
    • CommentTime6 days ago
     
    Exellent posts, Mariposa, thanks.
    • CommentAuthorbhv
    • CommentTime5 days ago
     
    When this site was down the other day Charlotte sent msg to Joan on Facebook. Joan says this site won't go away and she won't leave us in the lurch. It was probably a problem with the server. So we will have patience till she let's us know the plans. I know I like it here much better.
    • CommentAuthorNicky
    • CommentTime5 days ago
     
    Good news. I also like it here better.
    • CommentAuthorRodstar43
    • CommentTime5 days ago
     
    so do I, like a small community of friends. Wish it wa eaiser to down load history.
    • CommentAuthormyrtle*
    • CommentTime5 days ago
     
    I agree, Nicky and Rodstar. I like it here better, too. (If only we could get more members.)
    • CommentAuthorWolf
    • CommentTime5 days ago
     
    Almost always on Sunday mornings, sometimes into Sunday afternoon. I'll lay nine to five the next one is too.
    • CommentAuthorNicky
    • CommentTime5 days ago
     
    Yes, Myrtle, would be nice to get more members. But what would be nicer is if this caregiver forum was no longer needed by anyone - no more AD - all live happily ever after - well, I can dream can't I?? Wouldn't it be nice to communicate with each other under much happier circumstances?
    • CommentAuthorRodstar43
    • CommentTime2 days ago
     
    BEEN trying to think of a good acronym for our little group of survivors. maybe something we can unofficially market. just in case. ideas?