First, let me assure everyone that I am just as frustrated as you with this spam mess. I have removed the first 3 pages of it.The rest will just continue to sink to older pages. Secondly, I am even MORE frustrated than you about my IT guy's lack of availability. He has been out of town frequently. I have made decisions about the website that I hope will be acceptable to as many people as possible, but nothing can be done until Matt returns. I am very sorry about the delay, and I understand how upsetting it is to you. It's not making me too happy either.
I have not forgotten nor abandoned you, as has been suggested. You mean more to me than you will ever know.
However, the procedure I had in January to relieve the pressure, squeezing, and virtual vice grip on my sciatic nerve only lasted two months. I am in excruciating pain, which makes it very difficult for me to concentrate on writing and working on the website or anything else.
Here is the plan for the website and message boards......the website has a plethora of valuable information, and will remain up for anyone to access that information, especially my blogs. However, it will be inactive, as I will not be writing on it anymore. As for the message boards, this particular format and all of its valuable information will remain up for all to READ.However, it will no longer be available for posting. Posting and discussions will be moved to a new format, and monitored by a volunteer who is as committed to putting in the time and effort that I did for 8 years.
I will give you at least a month 's notice as to when the change will occur. I won't know when until Matt gets in touch with me. I promise to keep you posted.
Joan I am new to your site. My daughter in law found it for me. I am caring for my Husband of 58 years who was diagnosed with late onset Alzheimer's 2 years ago. His condition is deteriorating fast. He no longer reads and won't watch TV for very long. I have learnt strategies to help him but I am fast becoming very tired and stressed and can no longer carry out activities which give me pleasure, eg singing with a choir, theatre going and volunteering. My family are very supportive. I look forward to linking up with you when you get the revised site up and running. Teresa
i do hope the new format will be like this one where you know right away if there are new posting to the threads you have read. My biggest complaint with the other message boards is you can't tell if there is a new post until you click on it and scroll down to the last post.
Joan, it’s good to hear from you but sad that you are still in such pain. Fully understand about the changes needed for the site to keep it going and I’m glad it will continue. I agree with Charlotte on hopefully being able to maintain the ability for new posts to come to the first page. That functionality is definitely user friendly and what sets this site apart from others among many other great things about this site. This Site was such a blessing for me and I really don’t know what I would have done without it. ((Hugs))
I'm a member of over a dozen message boards that function like this one. This is by far the oldest architecture but they all function with 'stickies' which are topics the moderator leaves on top, and then the topics where the most recent post is on top.
In many cases the topics vary so much within the subject that there is branching you don't see here. This is a flat hierarchy message board. All topics are on the same 'level'. That's not common where the topics vary considerably. It can easily be accomodated though by newer message board architecture.
It also makes sense to make the old board 'read only' because you can't keep this dinosaur on the road forever and you can't port all the history over without a small team of tech people. The wealth of information in that searchable database is vast.
One idea that may have merit is to get volunteers to search through for various germaine topics such as spousal aggression or confronting poop or lewy body or EOAD and write up a summary on the new board under an appropriate topic header that lets new people read some of the relevant comments while getting the names of the topics in the source (read only) board. I would volunteer to do some of that when the new board is up.
I would urge Joan to consider a more expanded opportunity for those recovering from caregiving to be able to communicate with others in the same situation in a more goal orientated and forward looking way than being widows. There is no real place where recovery is the focus and that would be another ground breaking idea how to help IMO.
Any future blogs could include that topic where a search for help in what it's like recovering from caregiving a fatal illness offers thin gruel in our society.
At any rate, very sorry about the sciatic nerve pain. I hope that can be helped very soon.
Wolf - the other message boards that you are a member of - are they about spouses with dementia? Just wondering if there are many more support groups out there for spouses?
There is one in www.alzconnected.org that has a board just for spouses. The problem I have with it is unlike here, you don't know which threads have new post. When I do write a response it is slow to process. The other one I sometimes post in is: myAlzteam.com but it is a mixture of all type of dementia caregivers, even some with dementia.
I still prefer the I guess one could say 'archaic' way this one is set up.
I must answer to Wolf's comment about " branching" on other message boards. These boards have always had an option to post under a different category than the " general" that I have chosen to use in all subjects. The reason is because I tried changing once. The chaos that ensued made finding information impossible. Believe me, it was a nightmare. No one posted the information relevant to the category, and no one could find anything they were looking for. Keeping everything under ONE "general" category has worked well for all since that ill fated experiment.
Joan, if you are considering other software for the discussion boards I recommend XenForo. It is used at FTD Support Forum and some other non dementia groups I frequent. It provides an option to the read to show all threads that are unread and when you open a thread it jumps tot he last unread post. Unread posts are marked as such. It also provides ways for members to contact each other directly.
I've also had sciatica and while not as bad as yours it can be draining. I continued working through it and fortunately my disc problems were solved by steroids and PT. This was after PT alone and my condition worsening (I was using a cane for months). I didn't realize how much the pain affected me until I was relieved of it. So I understand that taking care of things is difficult for you right now.
I didn't say that clearly. I'm in favor of the flat format. People are stressed enough without finding the right branching.
Nicky, none of them are support groups for spouses. Joan is unique. I've searched over the years and have never found anything remotely similar. Most are games related like Paradox Interactive Forums or Matrix Games, and some are specific interest related.
Joan, I am so disappointed that your procedure was only temporary and the pain came back! It is just not fair to survive the caregiving experience and then deal with so much physical pain. I fervently hope someone finds.a.way to help you get past that. THANK YOU SO MUCH FOR KEEPING THIS SITE AVAILABLE! The searchable history has been an invaluable, priceless resource for me. I still haven't finished reading all of your blogs. But the most valuable thing is this "tribe", as wolf said recently, where we support each other. I've been trying alzconnected and it's pretty helpful too, but there is something unique here. I don't know how to define it. Here I feel like I have real, honest to goodness, friends who care about me as a person. Me, Bonnie, as a real, alive, person who exists separately from this horror story I find myself in. Me, as a person with real feelings. Me, as a person who deserves respect, honest responses to questions, and a shoulder to cry on. I think that is what you started this board for and I hope and pray that you have an inkling of the heroic thing you have done here.
I have no opinion about the different formats being talked about and don't really understand them, but I do think that most of the "stickies" need to go. One of them has not been active for 6 years! And a couple of others have been sitting idle for 4 years. They just draw attention away from the active threads and worst of all, they distract us from the messages posted by new members. As an example, a new member introduced herself a full day ago on the "New Members" thread and only one person (Rodstar) welcomed her, probably because no one (including me) saw her message amid all the old unused "stickies."
Joan, thanks for sticking with us thru your many problems. This has to be one of your major accomplishments born out of adversity. Bonnie said it really well. Than you!!!!!!!
Joan, I can only thank you again for all that you have done and continue to do for us...while you have gone through so much yourself. I can only say "ditto" to what bhv (Bonnie) and Rodstar have said.
In terms of the computer technicalities, I have no idea. I know that I don't even look at the stickies anymore, and I totally missed that we have a new member. Welcome, Tesscol, and I hope you stick with us. I had to give up my choir singing to take care of my husband, too. This site has been a lifeline, and it is very unique in the way we support each other through the process and even after our spouses are gone.
If the group can stand one more word about my pneumonia (or whatever it is), I had a CT scan of the chest with contrast yesterday. I have not heard yet about any results from last week's testing, except that the TB test was negative, as expected.
Elizabeth, I am not talking about tesscol. I am talking about dconnor, who posted (logically,I think) on the thread called, "New Members - Please Introduce Yourselves Here." That thread is buried in the other "stickies."
My point is that we should not complain about the lack of new members when even old members have trouble spotting messages from them.
Hi Wolf, I doubt that all these new members will see your welcome message, since it is buried in a thread called, "New Update from Joan." You previously referred to the structure of a website as "architecture." Using that metaphor, this site is like a house with four front doors. None of them has a welcome mat and there is no path that leads to any door. IMO, if this site dies, it will be for lack of new members. For that reason, we need to cultivate people who join us for the first time. I hope that the new format will serve that purpose.
I am not sure why you say finding the 'new members' thread is hard. On my computer if someone has posted there, it is always right at the top followed the 'widow/widowers' and 'spouse in residence' threads. But I do agree there are those in between that are rarely if ever used.
Hi Charlotte, As you say, it is at the top IF someone has posted there. But if someone has not posted there and has instead posted on the "widows" and "spouse in residence" threads, the "new members thread is not at the top. Anyhow, it's not whether you and I, who are longtime members, find it easily. It's whether possible new members, who don't even know the thread exists, find it easily.
I remember when I joined this site four years ago, the "nursing home" thread was at the top, and luckily that was exactly the category of advice I was looking for, so I posted on that. But the response I got was that I should search the thousands of posts about my question. I was kind of intimidated by that. (Obviously that did not last too long!) Those were the days when Joan still welcomed new members, so if I had posted on the "new members" thread, I would have had a better first experience.
Wolf, Nicky and Charlotte are correct, there is another Alzheimer forum that is well used that is specifically for spouses and partners. It is at Alzconnected.org - it is their "Spouse or Partner Caregiver Forum" (run by the Alzheimer Association, with input from professionals at times). It can be found by "googling" "forums for spouses alzheimers": or at the web address https://www.alzconnected.org/discussion.aspx?g=topics&f=2147485438
It was not available when I began the Alz. journey (I see posts go back to 2011), and I think Joan paved the way with her website and this message board being the first to identify and address the very different needs of partner caregivers. It is being used by a lot of people (with many folks lurking) and addresses the same issues we have been wrestling with here. People used to using this forum might find it difficult to navigate that one at first, but if you read their instructions, it becomes easier.
I think its important that people know that the other forum exists. Joan's forum was my lifeline for most of a decade, but when this one became less populated and functional, that one saved me too.
Joan, I hope you find total relief from your pain! My dad was incapacitated with that, and PT was able to help him when he could no longer get shots in his back. Gratitude forever for what you have provided us.
I think a lot of the instructional "stickies" could be consolidated/edited into one.
I am not sure if others are aware of it, but sometimes the close friendships on this board can be intimidating and it can feel clique-ish when new voices seem ignored and only the "friends" chime in to talk to each other. It is very good to to know & support each other, yet welcoming new people and being inclusive, not exclusive in conversations would grow the input on this board.
The Alz connected board calls the period after death the 8th stage of Alzheimers, which feels apropo.