by Ed - Is this forum dying?

Ed1937

If you take away all the posts about the new format we have, it seems there are not close to as many posts as there have been since I joined over 5 years ago. It sounds logical to think people are moving to the Mayo Clinic forum, but there is not much going on there either. Has the cure for dementia been found, and I'm the only one who doesn't know about it? What's going on?

Battlebuddy

This is such an important site, and serves so many people. It’s been such a blessing in my life, giving me so much insight and support through the worst years and stages of my dear husbands illness.

Yes , the new platform has been difficult to navigate , but it’s not impossible. Many of the old guard have made the jump to the new form.

I think that it’s time for some positive comments, and for us to remember why we come together, no matter what platform it is. We need each other. I’m just grateful for you all . Let’s focus on how we can help and support each other and just deal with the changes the best we can

Joydean

Ed I hope and pray it is not dying. I haven’t written very much in the last couple of months myself because my dh is progressing, several house problems I’ve had to deal with and mostly because by the time I can get dh to bed I’m exhausted. It’s my crying and pity party time. I try to read what others have to say and occasionally comment. But I personally have a lot of questions I want normally ask. It just doesn’t seem like it’s time to ask because of all the confusion about the site changes and the difficulty of doing so.

This site is the first and only one I have ever been on and it truly has been a life saver for me. I don’t know how I would have made it this far without all the caring and support from so many.

Quilting brings calm

I think some of the posters on the other site didn’t make the jump to this site yet. That could be because they are in the trenches, taking a break, or are in stage 8 and decided the new site was the time to leave. Or they haven’t figured out they have to pick a new password etc.

Then there are some that got so rattled by the new site that they gave up. That’s too bad because I think they’d have gotten more familiar with the site as time went on.

I have noticed some new posts from new people. The site must be easier to find now for people accustomed to social media. Unfortunately I don’t think their posts are getting many answers. The amount of scrolling and clicking I have to do on my iPhone to read several threads, and then find my way back to the next one is annoying. So I’m overly selective about what I open, and I expect others are too.

[Deleted User]

The user and all related content has been deleted.

Quilting brings calm

—-Trying to evaluate have I seen this thread already , replied yet, etc more difficult for me to sort.—

I have figured out that ‘New’ on a thread description means I haven’t opened it since the new site when up. ‘1 New’ means there is one new post since I opened the thread last. I’m seeing this on my iPhone. No idea if it works the same on a laptop

M1

Ed i too hope it's not dying, but the traffic definitely seems down. I haven't investigated the Mayo clinic site any further. No energy to do so. Its a shame to feel we've lost something ineffable. Definitely harder to navigate.

Elshack

I do think this site is difficult to navigate but for now I will stick with it. It was so much easier to see all the posts with the previous site rather then having to scroll down the page to see. I am just sad that there is now yet another adjustment to make in this life caring for a loved one with Alzheimer's.😒

Just Bill

Writing is therapy for me. I write to see my thoughts and stay positive. Writing for me is very therapeutic. Sharing my feelings and thoughts is a coping mechanism for me. When my world is imploding and depression is lurking around every corner. I can write about and then let it go. I lurk a lot and learn a lot but I write when putting my thoughts into words with a positive spin is the medicine I need. I think two platforms to practice writing on is twice as good. I will be lurking, learning and writing here and Mayo Clinic. Part of my daily routine is checking both sites. The writing bug just hits me when it hits me. Writing and being part of a community of similarly challenged people will always be therapy for me.

loveskitties

Ed, I think part of the issue many had was that it was such a dramatic change, all of a sudden (even though we knew a change was coming)...much like this disease.

In both cases, wishing for the past does nothing for coping with the present.

I know I could not use this site on a Smart Phone with a little itty bitty screen...lol.

The best we can do is keep on keeping on and hope that missing members will find their way back, continue to give Admin suggestions for improvement, and post helpful information on how to work with what we have got.

Perhaps we should have a thread something like...Help navigating the site...with comments particularly noted as either Phone or Laptop/Desk top instructions...To help everyone find it perhaps admin would pin at the top of the page. Just a thought as helpful hints are now scattered thru the system.

Iris L.

The same drop-off happened in 2011 when the previous platform became the new platform. A lot of members never returned.

I see no reason to have four caregiver boards versus the two we had before. A lot of new member posts will be overlooked. I am reading fewer threads.

Iris

Mint

I see a lot of positive changes here. Unfortunately the thing that has been most frustrating for me is typing . If this is true for others also see why some gave up. They definitely need to fix those issues. I have learned to deal with them to where it is less frustrating now, work arounds, the problem is still there and if someone has trouble figuring out work arounds going to be frustrating for them.

For what has improved. Personally it is much easier for me to use my iPhone here now than old site. Can do anything I want here where as I couldn’t before. Yes it is easier on my iPad still. Photos are fantastic and I enjoy them. Like how when I sign in it takes me right to the new posts I haven’t read yet. Like how I can start posting, leave, come back and pick it up. They have made delete available now. Not one post I’ve done has dropped, frequent and very frustrating before. No long delays so far waiting to put a post up like before.

One thing I find is all the posts just seem to blend together instead of each one being distinct. This is a problem that should be easily corrected some way. Sort of feel like you have to wade through it to find what you want instead of just being able to walk up to it.

Agree some probably found this a good time to drop off. Think if we give this a chance it will work out. We might even find some of our own work arounds for making stuff more distinct if we all band together, think about and willing to give suggestions a try to see how they work.

I signed up on Mayo Clinic but not very impressed, for me this is a better option.

Rick4407

Anything new is an adjustment at this point for me, and maybe other "older folks" as well. I was never a frequest poster, but read every day at least 2-3 times. I still do.

My DW died on Friday 21 April. It's been a long 7 years siince diagnosis. She stayed at home with me as she had requested.

I'll continue to read, as many others in stage 8 do, but expect posts will be much fewer. I usually only posted when I was one of the first 30-40 to read and there were very few if any posts. After covid and the isolation of dementia my new goal is to just to meet people, to rejoin the real world.

Is supect that as before there are lots of readers who just don't post. I found the "regulars" insightful and smart. Thank you. Rick

Joe C.

I think as new members join and have experience with the old message board format things will rebound. I have been through many computer platform changes in my working career and it always seems no one is happy with the new and miss the old.

M1

Oh Rick.....I'm so sorry. That is important news. Warrants its own thread...unless maybe you don't want it?

harshedbuzz

@Rick4407

I am so sorry for the loss of your dear wife.

HB

harshedbuzz

Mayor Ed-

It's my experience on support forums that membership does kind of ebb and flow. People tend to join and participate when they are in crisis. Some will remain but others will drop off once they find their feet and no longer need hand-holding. Some of the latter types might resurface when things move to a new stage and they find themselves struggling with the new normal.

I feel like support and chat forums, in general, are not as popular as they once were. It seems to me the heyday of this form of communication was the early aughties when I was a moderator (paid in one instance) for 2 boards and participated on a few others. Of those, 2 core groups from a board migrated to private FB pages, one migrated from the parent organization in protest and still exists as a tight community and the rest sort of fizzled out.

There does seem to be a bit of a drop-off in posts. I suspect those who have been absent from the board since before the announcement have been lost. They might think the group is gone. The re-opening of IRL support groups may be impacting traffic here as well.

I wonder if the traffic here on spouses is significantly lower relative to the parent and caregiver boards. I feel like I am seeing a whole lot more griping about the changes among spouses than children. It reminds me of when one of my autism support boards merged with another-- talk about a group of people who don't like change. Personally, I feel like the new version is mostly an improvement-- it's faster, works better on my phone, I like being able to tag members, the search functions are a vast improvement over the former site. I don't really notice all the silly swag like post counts and birthday cakes.

HB

Kibbee

I’m working with the new format the best that I can. For some reason finding and reading the posts seems to be slower, more difficult and clunky to quickly navigate around. But I will persevere as we haven’t much choice in the matter.

One thing that has changed for me is that the old format felt like it was “ours” and we had privacy. To me the new format feels like we are being watched and measured. The badges, cakes, flags, etc are not viewed as necessary by posters and many have vehemently expressed their disdain and unhappiness about them. But I can’t help but wonder if the purpose of these items is to provide metrics for the parent organization. Perhaps to justify the expense of maintaining the forum…perhaps to have engagement metrics to use to support making fundraising efforts. Or perhaps I’m just being weird and paranoid!

LadyTexan

I think the forum is morphing. Whether for better or worse remains to be seen.

I hope it is NOT dying.

I continue to struggle to find my way around, where I posted, where I replied, what I've read, what I haven't read. I rarely stay signed in to any website, including this one. Maybe that is why it seems clunky to me.

I wish I found this platform easier to navigate. Sometimes I access it on my iphone, sometimes on a notebook, sometimes I sign in, sometimes I don't. I am trying to adjust because this forum is so important and valuable to me.

I am not giving up. I am not quitting. I just wish it wasn't so clunky and frustrating.

You all are very special to me. I want this forum to be a safe useful and user friendly space for all of us.

Jgirl57

Rick4407, peace to you and your family .

Lgw

Oh please don't let it die. I need to vent and ask for help too many times.

mommyandme (m&m)

Rick, so sorry to hear of your loss. This is all so difficult. Please take good care of you.

I’m in stage 8 so sometimes I’m not sure if I should post, especially on the spouse/partner forum since my LO is my mom. Somehow I can’t leave. I’ve been here most every day for 3 years, it’s actually part of my workout routine. I can usually get an hour of exercise in reading everyone. I don’t think I’ll be leaving but “here” does seem more down. Such an incredible group of “friends”, is how I feel, that helped me immensely while in the trenches. I can’t imagine navigating through this journey without you.

I wish there weren’t three similar options in the Supporting Someone with Dementia. General topics, Caring for a Parent and Long Distance shouldn’t be separated imo. I think reading in the three different places is cumbersome. All those three can have multiple similarities with questions and discussion points. I’m sure many are missed or just looked over and I’m sorry for that. Toggling back and forth to try to help is tiresome. Everyone that posts questions should be responded to. Again, just an opinion.

Accept and Adjust is the mantra for me and my journey with Dementia and this dementia site is no different.

harshedbuzz

@mommyandme (m&m) said:

I wish there weren’t three similar options in the Supporting Someone with Dementia. General topics, Caring for a Parent and Long Distance shouldn’t be separated imo. I think reading in the three different places is cumbersome. All those three can have multiple similarities with questions and discussion points. I’m sure many are missed or just looked over and I’m sorry for that. Toggling back and forth to try to help is tiresome. Everyone that posts questions should be responded to. Again, just an opinion.

If you click on "Discussions" at the top of this page and then scroll down to near the bottom of that page, there is an option to "Browse All Discussion" which will display all posts in with newest replies at the top.

HB

Palmetto Peg

I don't think it is uncommon for people to decide that a new platform is too difficult. We always had issues at work when we changed to new software, and more than once I had staff members crying in my office saying they were going to quit their job because they couldn't deal with the change. After a time, the new software became easier to navigate, and everyone relaxed. I really hope that is the case here, and I also hope that ALZ Connected will read what the issues are with the platform and try to make it better. I need you all!!! I am not a frequent poster, but I read on this site every day and have learned so much valuable information. Hang in there - it does get easier!

ladyzetta

Rick, my prayers are with you and your family.

Mayor Ed, I don't know if this site is dying, I just know it is really hard for me to figure things out. I have tried to keep up with the readings but for some reason its just not the same. I don't want to give up because I have found a lot of comfort on this site especially on Lorita's friends. So I guess for the time I will keep trying.

mommyandme (m&m)

Thanks HB. I actually knew about that but forgot. Uh oh.

Iris L.

M&m, any member can post on any board.

mommyandme (m&m)

yes Iris, thanks 😅

I felt like, out of respect for the spouse/partner caregivers, the group are often veterans and so so wise and, I wasn’t caring for a spouse/partner. I’m completely ignorant to your journey except what you all share so beautifully. I decided to mostly just gain from your wisdoms and persevere the best I could. As I’ve said, caring for a spouse/partner seems like it is so much more, a completely different dynamic. You have my respect! I don’t think I could do it without A LOT of turmoil and I’m so so sorry for what you’re going through. For all of us of course.💕 I so hope I never have to deal with my spouse and this disease as his caregiver…🤞🏻

Anywho… It was me that chose not to post much here. I know this place is all inclusive!! It’s truly a wonderful place. Thank you so much for being here.

Also: they’re listening yay!! So glad there’s a delete function now!

GothicGremlin

Rick -- I'm so sorry. I wish you peace.

As for the site - Hard to know if it's dying... I know for me -- I've beaten Victoria2020 to the ennui punch! That's exactly where I am. I'm mostly over the new changes and I can do most things, but I feel like I expended a lot of energy for ......? A badge? A cake? Then ennui kicked in. I want to participate more, but my motivation has taken a big hit.

I've gotten so much from everyone here - this place has been a godsend. I do try to give back where I can, so I'm not planning on jumping ship. I just have to figure out how to get past the ennui.

Jeff86

Heartfelt condolences to you, Rick. May you find peace in the days ahead.

Iris L.

I'm sorry for your loss, Rick.