I know it has been a long time since I have checked into the message boards. Please log onto the home page - www.thealzheimerspouse.com - and read today's Farewell Blog, which will explain EVERYTHING. and hopefully, answer all of your questions and concerns. PLEASE read the ENTIRE blog before posting your comments.
I have included my current email address in the blog, if anyone wants to write to me privately.
Ok group what do we do now? I will be lost without this. Do we start a Facebook group for us that are left here and want to keep in touch with each other? I would love that. It would not be as organized as here with different threads, but at least we can keep in touch and supporting each other.
I know we tried the Alzheimer's boards but I found people there who seemed to resent our group over there. Maybe it was just me.
Wow, just wow. That was quite a blog post to read. Even now, when Larry has been gone for five years, nine months, and six days, I still come here to Joan's first thing every morning when I go on line. Joan and the wisdom from her and everyone on this website saved my life. I'm not a big fan of Facebook, but I do have an account under my maiden name: Elizabeth Knowles. So I will look for "friends", although with this group it will be friends. Real ones, I mean.
On FB you don't have to use it to be in a group, just have one. I know when I check on people in the groups I belong many do nothing on their FB wall - some don't even put the right info. When you are in a closed group, unlike here where anyone can see it, there only members see the post.
I echo what Elizabeth sad. I could not have made it through the nightmare of Alzheimer's without this site. Thank you, Joan, from the bottom of my heart.
Joan, good luck with your new life. Even though many of us will miss this site, your leaving it and moving to new projects shows that one can survive the loss of a spouse and even find a new life after the caregiving trauma is over.
As for what to do now, we need to think about what we want to get out of a new group.
If we're looking for a group like this, where people can say, whatever they like without fear of being seen by unsympathetic family or friends, a regular FB page is not going to offer that. If you already have a FB page under your name, will FB allow you to post under a pseudonym? I think that's an important feature when you're being so candid about sensitive matters. Also, this page worked because it had rules and was moderated. As Charlotte suggests, a "closed" FB page might work, but if outsiders could not read and search the posts, how would potential new members know it is a group they want to join? Also, would someone would have to agree to be the moderator?
I guess I'm not smart enough to have ever figured out Facebook. I have privacy check, restricted to family and friends only, even just a family but every day I get hundreds of posts mostly from companies or someplace i have looked online. If my hairdresser and a couple of others were available through a website rather than Facebook, I doubt I'd ever look at it. Will admit I have looked more the last few months during our isolation but we have restricted internet since only use a jetpack, and hate to waste it on facebook things I'm not interested in. Plus I've never figured out who sees what I post so resolve that by never posting :) But I'll go with the majority.
I think the closest in person group - is about 15 miles away but a long country road, not a lot of homes along the way so doubt I'd ever go at night. Of course right now everything is virtual and it all says call first because it's all changing so fast.
Oakridge, Charlotte also suggested a google group. I don't know anything about them. Charlotte, what would the pros and cons of a google group be, as compared to FB?
I belong to a private group on Facebook with a small group of Air Force people. When I post there, it is not seen anywhere but there. My friend is the moderator there. I will ask him a few questions and get back to you. I think the group title is visible to people and they can request to join. The moderator decides.
If I was the moderator, Not sure how to screen new members. I agree with Charlotte, I didn’t feel comfortable At alzconnected, but we did set up a separate group there. For awhile I checked both sites but got bored with them and just kept returning here. New people might be fine with that place.
We could have a Facebook group of just us who know each other. So like if we met someone we’d like to invite to join, could give the name to the moderator who would then let them in.
When some left here and started a FB group it was closed. I moderated it for a while after the original left. I left the group when I was having a bad time and got nothing but nasty responses to what I posted. They never forgave me - it was alright for them to have bad days but seems not me.
I currently moderate a closed group for my high school reunion. When someone post it shows up on your FB page but only you can see it.
I don't know anything about google groups - just saw they have them. I mainly want to stay in contact with you all.
I just did some reading about Facebook groups. Closed group: anyone can see the group name, description and member list. Only members can see posts. If we don’t want people to know we are in the group, we could set up as closed til we get the people we want and then make it secret. Then people couldn’t see the member list, but also can’t find it unless we send an invite.
We can have members answer questions before admin decides to let join. Admin can delete members, can block people, can temporarily mute people or posts. Can have more than one admin. Can add moderators who don’t control memberships but can deal with posts
We can create topics and tags to help searching. Only admin can create topic, but then any member can add the topic to any post. Topics allow members to find posts in the group.
Members can post photos, videos, files.
Topics can be pinned. But I don’t know how to do that yet.
Members can manage notifications you get from the group. For example, I get notifications about emails and Facebook posts on my phone. I like that a lot.
We can always delete the group if we don’t like it.
I’m willing to set up a group. Anyone interested? I have emails and Facebook names for a few people here. Enough to get started. Wonder if we could call it thealzheimerspouse? Would Joan object to that? Or maybe AlzheimerSpouseRefugees.
WOW, I just looked at Facebook groups, there are ones for about everything you could think of. I'm definitely a refugee! I would like to stay with "my" people. I feel like I know you all, although other than Charlotte, I'm not sure if your names are real or not. What do we do, use our real names or something like a screen name? Maybe my maiden name as someone said? Just the thought of facebook scares me -- but I'm just an out of touch old lady :) I haven't seen anything from the guys, have I missed it?
Btw, I don’t have a high need to be admin of a group if someone else relishes the idea I don’t want to steal anyone’s thunder.
On Facebook they say you must use your real name. However there are lots of exceptions out there. I don’t put a lot on my profile And don’t show my birthday. I think I put the wrong date there anyway, but I don’t want all those weird birthday wishes on Facebook. I only have a few friends and have hidden several of them. I put up my picture but I have a number of friends on there who don’t put a picture.
If you want to have a separate identity, you could do that with separate email and name. But it would be inconvenient since you’d have to sign out of your real name and sign in to the fake one. I think you should use real name. Group will be closed so your other friends won’t see any post on our group. If people searched for Alzheimer’s they’d find the group name, description, and list of members. So, conceivable someone could see that you belong to such a group. Again, they’d have to search for it. They still couldn’t see your posts or post anything to you.
Go thru all the privacy settings and make sure only your friends can see things. Not friends of friends. And set notifications. That way you’ll find out about posts and don’t have to look all through Facebook to find out if any of us commented in the group.
You might see Alzheimer’s related ads on Facebook. Any other risks people know of?
We had someone here or at alzconnected who was stalked by a daughter. That was awful. But if anything like that happened we could make the group secret, delete the stalker and block them.
Yeah, what about you guys..?.. Wolf especially. We only have a few days. Although she said these discussions may be left here as read only. Sounded like she wasn’t sure that will be possible. Hope it can cause of all the history. And if the guys miss it they’d see this discussion.
Thoughts on all this, in no particular order: - bhv, This sounds like a plan to me. - My only hesitation about the "refugees" name is that it won't attract new members (or are we trying to do that?) - Like you, I use a fake birthday on FB - if someone doesn't see this discussion in the next 5 days, they won't know about the new group.
If you don’t want to do Facebook there is a private group on alzconnected. I’d have to invite you. Last time we were locked out of these boards we set that up but it’s just me, Charlotte, Rodstar and Nikki9. Haven’t used it in 850 days.
On alzconnected you can have “connections”. It allows you to exchange private messages. And you can invite connections to join private group.
The main spouse forum got offended when we were talking to each other on that main page. So if you want to go this route, set up a user name on that site and then tell me your name here, eg you could still be Oakridge. Also, by being there you ones in the trenches would have access to all the other people there.
Have basic communications established very quickly now as bhv said. Make sure someone has collected all email addresses and then use the rest of the time here to decide where to try to land together. Don't try to solve everything because no solution will be perfect, but try not to leave any caregiver behind. Where is Paul?
If you guys land somewhere, somebody email me and I will probably join. Otherwise, all the best to all of us who kept using these boards. Most of you have my email.
I have been on this board since late 2015. My husband died in October 2017 but like so many of you I never would have survived my journey without this place. I still come here every single day and feel I know everyone here. Though I have never posted, I feel this is a community I will always be part of. Nobody I know can understand what living with a spouse with dementia is like. I would desperately like to follow this group wherever it goes. Is there someone in particular to whom I can send my email?
I would like to stay in touch also. I have checked in often on Charlotte, Elizabeth, BHV, Wolf, Myrtle, Oakridge and many others that were so helpful to me. I will put my email address on the information sheet and leave it up for a few days. I have been inspired by the journeys of the survivors of this journey and have hope for those still dealing with spouses. I hope there is a platform where everyone can stay in touch.
I believe George has gone on to the great beyond. I've been wrong before though.
InJail, I wrote your email down but a decision needs to be made and the probability is that it won't be in time because a consensus must be reached. Once it's shut and we're on emails only, talking over each other quickly becomes a mess. Joan said the 15th but I would argue that whatever is going to happen needs to be decided by Friday night.
It sounds like Facebook to me with Alz running second. Either Charlotte or bhv should set it up and I think it should be Charlotte since she has been a central figure lately and is still a caregiver. If that flies then make sure people like oakridge know how to get there and do what - or that she has email to someone who can help her.
lindad, make your email visible on your profile if you can.
I just started a file with emails, Facebook name and/or alzconnected name. I have email for Oakridge, Wolf, Injail, Lindad, Lindylou, Mitsou. I’m friends with Catherinecs on Facebook and made note of Elizabeth’s Facebook name. Charlotte - I sent you email a little bit ago, not sure if it went through? I have the all4**** address. And we’re on Facebook and alzconnected so I can’t lose you. I’m thinking you’ve got enough on plate so I can set something up and we can admin or moderate it together??
Myrtle and Mary75 I thought I had your addresses but can’t find right now. I’ll put my email on my profile til Fri. If you have addresses you can safely send them to me and I’ll add to my list. Then if anyone starts something better later we’ll have a group list.
Wolf, I was afraid of that. George is/was a great guy.
In Jail, I am so glad to hear from you.
I vote for a FB closed (but not secret) group, but will join whichever forum the folks here want. If we can decide and Charlotte and/or bhv agree to set it up, we can transition to it over the next few days, while we try to get the news out.
BTW, for those who are wary of FB, I am, too. But I reluctantly decided to join to keep on touch with extended family out West and the pics they post of their kids and new babies. It works out fine.
I'm here but I don't think I have any special insights. I think having someone with all email addresses as a way of contacting everyone seems like a good idea. I don't know if it meets needs for anonymity but Slack is a nice conversational tool. Problem is to make it secure you need some money. OTOH this site is not very secure, as the spam attests and the lack of a SSL certificate.
I'm trying to phase out of FB. Not very successfully due to belong to a few support groups but I've held back and Zuckerberg's behavior is not forgivable. So I doubt I will ever leave it but my activity on it has dropped a lot over the past few months.
PaulC do you want to send me email or Facebook name just in case you want to stay with us?
Charlotte - the email I have is gmail. Your profile here has yahoo. FYI
Does yahoo have email anymore? I clicked on the search tab and searched on blank and sorted by last active. Got a member list and copied info (if any) from names that had lots of visits or discussions created and names I recognized. I quit looking if they haven’t visited since before 2018.
There are several hotmail and yahoo addresses. Not sure if still active. Might try them though. For example there’s some info for ol don, George Streit, Baja, marche, phranque, bluedaze, maryinPA, gourdchipper, KY caregiver, TexasJoe, and amber
I’m going to save the intro about the. Christmas Lodge and Cottage on the Lake as files. Then could upload them to the Facebook group. I know we haven’t really used them last year, but I can’t bear to be without the Christmas lodge and I just love how wolf introduced that. Any other “can’t be without” stuff?
I haven't been on here in a long time but do check in periodically - I'm glad I did now but so sorry to hear that Joan is shutting things down. This site was a lifeline to me and I'm so thankful that she saw the need and started it back when she did. My husband had a short journey, relatively speaking, as he was only ill for about 4 years when he died 5 years ago at the age of 65. It didn't feel particularly short at the time but now my heart goes out to those still dealing with both AZ and Covid.
I do not have contact information for anyone so will likely not be able to join any new group you start, but I wish you all the best going forward. Stay safe and healthy and continue to be there for each other.
Bonnie, let me know - either you can set it up or I will. I have no problem sharing the admin job. When people want to join either we can send you the invite if we know your FB name or you can do a search for the group then ask to join. What I have done with other groups is ask questions. But since it will just be people that have become 'family' from here, we just need to know the name you use here.
The yahoo address is the one I use so junk mail also goes there. The all*****@gmail is where important email goes to - financial email and friend. Remember when setting up your FB page, you make it as private as you want. When there are post from our group it will show up on your FB page but only you can see it. If you feel more comfortable put on fake birthdays and phone numbers. You could even get an email address just to use for it because FB will want one to send confirmation to and to use if you can't log in. I have about 8 emails all with a purpose. That is not counting the ones I never use with spectrum and a few other accounts.
I repeat myself, as I often do, sometimes wonder which one of us has az :)
Whomever is going to take on the work of moderating it, can make the choice, IMHO. That said I don't like facebook, like Paul, I've phased out of it as much as possible, on the other hand, don't know anything about the others. So I'd have to check into facebook everyday if I wanted to see if anyone posted? I hate having those notifications sent to my phone. Many of the secure sites do cost and I'm more than willing to kick in a few $$ a year -- I do that on an artists site I still belong to, don't paint anymore but like to see what others are doing. Lot more people there but if there is a cost, you can count me in. bhv*, Charlotte and maybe Wolf have my e-mail, so if I miss something just shoot me a note.
Reminds me, on my way to town this morning, I passed a new Bar that has opened in this last week. ( liquor type bar.) It had the sign, then a bright orange sign OPEN, then along side it was another sign.....Hand Sanitizer, LOL. Was almost enough to make me swerve off the road and grab a quick one....what do you drink at 10 in the morning?
Made a split second decision on the way home to stop at SAMs, since the parking lot didn't look too bad. Just about all handicapped spots have been changed to pickup spots but not a problem today. Got my mask out, but I saw they were cleaning each cart then handing it to you as you went in, and only a very few people had masks, and they were very elderly, like I'm not :) So didn't wear it, was able to get some good fresh fruit and other things we've not had for awhile. Also did my usual process of sanitizing myself as well as the car each time, and did leave my sunglasses on the entire time so felt pretty safe. Everyone was keeping a safe distance and there was no confusion like I've seen at walmart the couple times I've been there. I use the wipes on my phone, wallet, purse, steering wheel, everything - whenever I go out.
Bama*2/12 I am still checking in daily but haven't been posting. This site was so much help to me and I will miss hearing how all of you are coping. Life for me at 92 is good and I choose to remember the good memories. Love to all of you. Grace Holmes and Roll Tide...
Bama - I took down your name and your email from your profile here. Will invite you. Roll Tide!
Bluedaze - I don’t have name or email for you. I have my email shown on my profile for a few days if you want me to include you. It just always makes me smile when I see your “name” here. You helped me a lot back in the day.
Nbgirl - I took down your email from your profile here and will invite you. You might want to check if the email is still good. I don’t have a name for you.
Oakridge - I’m leaning toward Facebook because we can post files, pictures etc. you don’t have to have notifications to your phone. You could check on any frequency you choose. It’s not like Newsfeed where sometimes you can’t find posts after first seeing it. With a group you can click on the group and scroll back through the posts.
JanK - I’m so happy you checked in!!! Click on my “handle” on this post (bhv*) you should see my email there. Send me the name you use on Facebook and your email so I for sure don’t lose you.
For name of the group on Facebook what about alzheimer spouse haven?
I like Alzheimer Spouse Haven. I'll tell you all some harrowing tales about the Alzconnect site and the Alzheimer Assn. help line once things are up and running. So much gratitude to you for finding a new home for us.
Since Myrlle and Wolf mentioned my name. I I feel as though I should say a few words. No ..... I haven't gone to the great beyond, although at 99 years maybe I belong there. Like so many of us old timers, I still visit this site often and feel the sorrow and pain expressed here, but feel as though I have nothing of value to offer. I am continually amazed at the strength and fortitude of the regulars who are going through this as I once did. ................... Old .... Old ..... GeorgieBoy
GeorgieBoy! Hello. I used to play golf with a gentleman who was 102 and still playing nine holes twice a week. Happy to hear from you.
Thanks InJail. Facebook it is then. I’ll work on it today.
Oakridge I’m not sure I wrote your email down correctly. Does it have the word ride or ridge in the middle? Or just send me an email with your Facebook name and email.
OMG! I am so happy! George, you're an inspiration to us all. What have you been up to all this time? And it's so great to hear from everyone else. bhv, I'll emaill you my information.
Well! Isn't that a fine how-do-you-do. My advice for future lives is to let others decide whether we have something of value to offer.
Hi Bama. I hope you're well.
My favourite posts here are on the old man thread and the sleigh ride at the lodge I did in rhyme. I wrote so much here you could fill a swimming pool with them. The spouse in residence thread was a good idea and the lodge caught on. Miles of personal struggle but as I told Mary 75, I found my 'voice' here and left more links than any other hundred people combined. My sister has saved everything I sent her that I've written. I don't think like that. I go to the barn beside the lodge and there they are, Daisy & Mae, the Clydesdales in tartan throws. And Sven too, who nobody liked. The Weekend I Grew Up which I never did write but is in my head like a movie or actual memories. The telegram to George in the next foxhole. The sack race at the lodge Frank won. My beach house nobody liked but I still go to. My villa in Naples where I go down on the Vespa to town to buy groceries which doesn't exist either.
In real life I know everyone on the court and I have over a dozen friends I can call or visit after the virus. But what I know is that people who think they live in the real world are welcome to believe that. The experience of self awareness as a human is so overwhelmingly personal, everyone's idea of what 'the real world' means is their own construction more than anything else. That's how Christians think last judgement day applies to everyone while Hindu and Sikh beliefs obviously don't. That's alright because that's probably what Hindus and Sikhs believe too.
"One day," I said to someone recently, "you may come to understand you live in the prison you built and maintain." I said that to someone who felt oppressed by their circumstance. My cell was never locked. I chose to stay just like everybody else here did and does. I must have told people here a hundred times that proves you have good character and that style points mean squat. We suffer great pain and ugliness to do that. Nobody takes delivery. I shrug. How it seems and how it is are rarely harmonious.
I've spent my life watching people get off the bus because they came past the point they want to know. It took a long time to realize that's because there wasn't one bus; there were two. They never got off the bus past the point they want to know. They weren't on the bus I was on.
We come to some point, and we realize a new fact, and we change a thousand things because we now see something differently. Then things change where nothing changed but life seems different and we might remember only the love, or truly forgive the ugliness, or the limitations of something, or open to the dog, or accept where we are more, or fear a new idea, or open or close to someone. We rarely realize we're doing that and that we do that all the time and have done it all our lives. I've easily been twenty different people over seventy years and the bus I'm on right now isn't one I've been on before - which is exactly as it's always been. So, now for the last act in this episode.
I just created a Facebook group called Alzheimer’s Spouse Haven
I invited Charlotte and Katherinecs as they’re the only ones on my Facebook friends list currently. I thought I’d be able to invite you if I knew your Facebook name or email, but apparently that isn’t so. Maybe because I made it a private group.
To find it and ask to join go to Facebook and click on the groups icon - looks like three people inside a circle. Search Alzheimer’s and you should see it. If you don’t see it include the word spouse or haven. It should come up. And hopefully you can see a way to ask to join.
It should ask you two questions and show you a couple of rules. I’ll have to approve you and then you’ll be able to post.
I didn’t post a cover photo yet. Was looking online, but then thought of myrtle’s shed. She’s looking for a photo.
Feedback on the group description is welcome. Also on the guidelines.
But my list of email addresses may yet come in handy. I won’t delete that.
Thank you so much for doing this bhv. I just sent a request to join. I answered 'yes' to the question about whether or not I'm caring for a spouse just so I'm not excluded, but I am widowed. Thanks to Charlotte and everybody helping with this too. Hard for me to believe how sad it makes me to think this group will be gone, even almost 3 years after he died.
That is the link to it. I had trouble finding it. I had to go to Bonnie's FB page to get it.
If they are on FB you should just have to put their FB page in if you know it. Otherwise putting in an email address should work too.
Sorry I was not here yesterday. I went into a funk yesterday. A accumulation of this site ending, needing to start a new place to keep our 'family' together, and the effects of covid.
If having trouble finding the group, make sure to first click on the groups icon. It looks like three people figures in a circle with the figures a darker color. And use the apostrophe in Alzheimer’s when you search in groups. There were only a few that came up for me that way. That’s why I put the apostrophe in the name since it is harder to type, but limits the search results.
Charlotte I sent you invite to be admin. I read somewhere that you have to be on a computer to do some things like welcome new members. Haven’t figured all that out yet. I’ll send a welcome message when there’s a few more of us there. So happy to see Paul joined. Wouldn’t want to lose you Paul!
I added widow/widower as option to the first question. Thanks InJail.
You can find me on Facebook as Bonnie Hazard Vick if you can’t find the group.
Before we get too far, would someone try to view the member list before joining the group? And let us know that here. Right now there are 7. Supposedly anyone can see the group name, description, and member list, but no posts for a private group. I’d actually prefer if the member list was not visible, but think the risk of people stalking us is probably minimal.
I’m going to try to find people by name or email on Facebook to invite. But when I click on invite it only allows me to choose among my Facebook friends. I never felt comfortable talking about Alzheimer’s on Facebook. I was afraid people would somehow find a way to hurt my husband. I didn’t want them to know for as long as possible. Now I guess it wouldn’t matter. But with my KC10 group it gets confusing for the people who are friends in both the group and in general. They see my posts twice.
I too am one of those that doesn't post very often. But, this group was a big help to me when I was going through this journey with Dave and even when he passed from ALZ. For some reason Charlotte and Art's story resonated with me (I think because I knew their journey was what was waiting for me if he hadn't passed away). It was only 4 years that we had with ALZ and I thought like many others, it was going to be a long journey. And, at first I was angry that I didn't have him to touch, talk to (even though that was getting almost impossible) then I realized that I was actually blessed in a way that he didn't have to go through this. He always said he would starve himself and that is exactly what he did. Dave was only hospitalized for about 5 weeks. Up to the day that we had to take him to the psych ward, he was driving me to work, etc. I pray for all of you still on this journey and hope for a cure from this dreaded disease. God bless all of you.
Hello everyone. I haven't posted for a long time and like many have said I would not have survived for several years without this site. Something strongly told me to check here today and I am SO glad I did!! The universe alerting my soul - love when that happens.
Like Joan, for my emotional health, I had to remove myself from all things Alzheimers/dementia. Having said that, I just accepted the face book invite. I feel like many of you are dear friends even though we have never met.
Huge thanks to you Joan and everyone else. Sincerely all the very best everyone.