I feel that I need to clear up some confusion about these Message Boards and the Alzspouse group on Facebook.
Re: These Message Boards – If you choose to remain anonymous, use only a “screen name”, and DO NOT PUT your real name in your public profile, no one will know who you are. I set it up that way so we could discuss private, personal, spousal issues in private. If you choose to put any of these - your real name, address, phone number, e-mail address, picture – in your public profile, you are no longer anonymous. Anyone who reads the boards will know who you are. I encourage people to put as little personal information as possible in the public profile. These boards are constantly monitored by a Message Board Monitor who alerts me to any violations of the Message Board Guidelines, new people for me to welcome, disputes, and everything/anything else that needs my personal attention. These boards are for SPOUSES ONLY to write about their innermost struggles concerning Alzheimer’s Disease relative to their husbands/wives who have the disease. The exceptions are experts like Dr. Josh, and they must be approved by me first, before being allowed to write.
Re: The Alzspouse Group on Facebook: It was started by one of our members – Claire. I believe the purpose was to be able to post pictures and videos of yourself and your family, which you are not able to do on the Message Boards. It is very important to note that you are NOT anonymous on that page. You use your real name, picture, and pictures of your family. There is nothing wrong with that if you choose that route, BUT, you must understand that neither Claire, I, nor my Message Board Monitor, monitor the page. Yes, it is a “closed” group, but as Claire said in another post, she does not always know who is joining.
It was a difficult choice for me to start this website, knowing I would be giving up my anonymity. The only reason I continue to write such personal blogs is because the feedback is so rewarding. They seem to be helping more people than I could ever imagine. However, if you read my own Facebook page, you will notice that I NEVER post anything personal – I only post press releases and blogs related to the Alzheimer Spouse Website. I know that seems odd, considering my life is an open book on my website, but I cannot control Facebook. I have no idea who is reading what, so it is my choice to share the rest of my personal life via old fashioned e-mail with only a few people.
Hope that clears up the difference between the two places.
I would add (in a completely non-administrative capacity, obviously...this is just an observation,) that I can see on the FB page where at least a person or so who is not a spousal caregiver but rather a caregiver to a parent has signed on. It is understandable that anyone in a caregiving role would welcome the fellowship and advice of a group of knowledgable and fine folk such as post here, but I think Joan has carefully trod the line of keeping this message board group to a strictly spouses group. While I personally would not want to be the one to say "spouses only!", I know there are good and valid reasons she's chosen that designation for this board. So I see this as another way that the FB group may be differentiated from the membership roster here. Perhaps that line is smudged more.
emily - there are caregivers of parents on this site. I have read their post and they have not tried to hide that the person they care for is a parent. I honestly think they should be removed from both sites - but that is only my feelings.
The FB page was started for pictures = yes, but it has also been a place where we can share our faith in relation to this disease. We can not do that here. Yes, there have been other discussions going on there too. Evidently the people posting there feel more at ease there than here or they know many are on FB and they can get more immediate responses/support.
I would hope that there is a place for both without anyone getting upset - without anyone feeling there is a competition going on between them.
Honestly, I feel FB azspouse is more secure than here since anyone can read our post without even joining. But, honestly, where on the internet is anything guaranteed secure/safe? No where. If someone wants to hack in, they can.
One thing I REALLY like about this site Joan is that it is for spouses only. I tried other sites, but as your site motto states " our issues are unique" And they most assuredly are. I don't post a lot in the FB group, but it is nice to have a way to share pictures and video. I do post updates and pictures of Lynn and my family on my personal page. I have the settings as private as I can.. but I also have no problem at all about who sees them as I think it is vital to put faces to the disease... I think it helps people know the depths of the disease. I also liked the idea of having a place where people felt safer to post things they didn't want to share here because they can be seen by anyone who comes here. But as Clare did state, she often times has no idea who is asking to join the FB group because she doesn't know peoples real names.
I have always felt safe here and I think how much you all helped me when I was a "lurker" before... by sharing our inner thoughts we are all helping others who are walking this same horrific path. There are somethings of course that I can't post here; just too private or I don't want the "wrong eyes" to see it. I was thinking the FB group might be a place I could vent, but now I am thinking I should just do as my Gram always said...if you don't want the wrong person to see what you have written, you better not write it down anywhere... somethings are best left as thoughts in your head. LOL
There is no competition between here and the Alzspouse site on Facebook. I just wanted everyone to be aware of the differences.
As for caregivers of parents on this site, I am not aware of them. (Except for many of us who are caring for both spouse and parent, but we keep the discussions to spousal issues). I usually send a private e-mail to someone who is not a spouse and wants to discuss their issues here, and explain the purpose of these boards.
Thank you Frank - we try our best to be male friendly here. You guys are often the "strong, silent" type, but know we will understand your feelings if you share them with us.
I completely agree with you, Frank, this site is by far the best. As Joan notes, I set up the FB site for people to share photos, and it has become a place where people also share info about family that didn't really relate to the AZ spouse topic, requests for prayers etc. I think Joan rightly sets out the parameters of anonymity. Frankly, I'd prefer someone else who is active on this site now be the administrator of the AZSPOUSE thing on FB - because I'm not visiting Joan's site often enough, now that I'm in AFTER, to recognize all the names. Nor do I want to befriend on FB every spouse in the country! If anyone who's active here now wants to assume (or co-assume) admin duties on the FB site contact me there. I don't think Joan would mind. I try, when I do monitor it, to push people with real questions relating to their spouses to come over HERE, not on FB.
Joan's site helped me through a difficult time in my life, and for that I am totally grateful; it also gave me many good and lasting friends, and for that I am eternally grateful! I always recommend IT (not the FB page) to others.
That may be true Phranqe but we all know that there is no competition between the two sites. I think they both have their own purpose and should be appreciated for those. I would never think of leaving this site for any other but I really enjoy the facebook site because of the instant response. This site is the educational site I need to help me get thru this horrible disease with as much dignity as possible. I enjoy both and know others do also. I have learned how to express myself here and have found no other site that I feel I can do this. I love the people I have met here and enjoy communication with them on facebook where the conversation is not always so serious..... like I said before,,,, they both have their purpose and both purposes are needed....... just my opinion....
Frank -where would we wives be without the humor from you, Wolf, and Ol Don. You put a new perspective to the issues.
I joined the FB group as well so when I come across a particular article or scripture that is appropriate I can post it without offending anyone. Lots of prayer requests there.
I love this site too, and on facebook, there is a group called memory people...a great facebook idea for anyone with dementia...there are over 1000 members now, and it gets bogged down a bit, but it is still interesting to hear about the disease by some who are afflicted with it...Rick Phelps has a daily diary of his experience, and Norm MacDonald, who is an author, writes about his perspective. Again, it is not limited to spouses, which is often necessary for spousal caregivers...after all, where else can we discuss wine without worrying about criticism..... I just wish that Joan would allow political and religious discussions....I could bash the republicans, the democrats, the tea party, the independents, Fox news, Buddha, Allah, Yahweh, the Hindus, the Buddhists, the Lutherans, Catholics, protestants, Episcopalians,the Shiites, the Kurds, the Moslems,the shriners, the elks, the Knights of Columbus..heck I could even make fun of the pope...How I miss the humor I could find in all those places....
Joan I for one didn't see your comments as anything except what the title states. I have never felt there was any sort of "competition" at all. If anything I personally see it as more of an extension of this site, a place on FB where those who have formed bonds here can share more things, like picture, faith, etc. I don't see them as two separate support groups, just as another place for those of us here to chat and share.
One thing I did notice last night about the FB site.... now on the right hand side of the page underneath the pictures of the members of the group, there is now a place that says "add friends to group" ... so now it isn't just Clare who can add members.... Anyone can just invite people who we don't even know. Not crazy about that at all.
Edited to add that I have since left the group. Too many non members from Joan and the group just got too big for my privacy level. Will just post here :)
Facebook changes stuff frequently. I just checked and found that the option that only the administrator could add people had been UNCHECKED. I have now changed it back so that only I (or my successor?) can let people in and I will ask everyone to tell me their name on Joan's site before I admit them.
the facebook SITE SHOULD BE FOR SPOUSES ONLY, and for semi-OFF TOPIC discussions only. If we start talking about "how do I?" we are not giving the newbies who stumble upon Joan's site the benefit of our collective wisdom.
I'm serious that if anyone wants to take over admin of this, please let me know. I'm in the AFTER stage and am not really interested in participating too much in the BEFORE stage any more!! Love, C.
I am one who has posted things I found relevant to a discussion when I helped take care of my mother, uncle and an aunt all who died of this disease but only in ref to a topic at hand/ I ALSO HAVE A SPOUSE WHO SUFFERS THIS DISEASE. I see nothing wrong with making reference to a situation and how it may have been managed when having taken care of another LO who HAD OR HAS the disease as well as the LO or DH or DW or DS we discuss here on the threads. Unless I miss my guess, our own Dear Joan has that responsibility and knows how difficult it is to manage two who suffer so. I would be careful about being too harsh against anyone who offers a suggestion about some method used in a previous adventure into caregiving a LO who has or had this disease provided they are presently caring for a spouse.
I agree with Frank, I do not post on any site other than this one. I did go to the FB site but I am going to drop it because I am getting a ton of emails from there and I am just not that email freindly. But even my friends say I need to talk more. I just don't say anything unless I have somethting to add. But I do find it much easier to post on here. I am one of those guys that just does what needs to be done. This site is the only place I feel I can express my feeling about what is going on with Kathryn and even here I am not very open. While I do not post much on the site I do come here and read just about everything posted.
I do feel more comfortable here talking with ya'll. I don't know why but I do. And hereI will say.
If you don't want to receive emails from the FB site, you can block them. Just go to the azspouse page and click on edit settings at the top of the page. There you can uncheck the email notifications.
I agree with JimB, I find it much easier to post on here too. The only time I do any posting on FB is to answer someone else because I get their responses in my email also. I think the security and privacy is important.
Deb42657, I agree. Although I don't post much here, I do visit and read 10, sometimes more, times a day. The information is invaluable. Joan's resources are un-ending, and for that I am greatful. The one thing that I do want you to know is, this site is not private. ANYONE can come to these boards and read, you don't have to be a member. Anyone remember Rono from last year? A troll that came on the boards for 1 day trying to start crap about sending donations to Joan to keep this wonderful site going? We all sure stepped up to the plate in her defence, and many of us gave huge pieces of our minds to that idiot, and I believe that Joan ended up banning him. I also know that my DIL was coming here last year and reading my posts to try and get ammo for a court case against me that never materialized. Although I love this site, I never forget that it is not private. This is in no way a criticism, just a fact. I'm still here, and I'm not going anywhere! I couldn't get through this hidious disease without this site, and all of you!!!!
This site saved me long before I became a member. It is exactly what a spouse needs. Your relationship to others is not the same as to a spouse. Caregivers to others cannot understand as well as another spouse. I check this site constantly and hope I help others in my postings...few as they are.
Guys, you hang with us...it gives us girls another perspective. We need you to balance us out. You know...the Mars vs Venus thing :)
I moved the last 4 comments to the humor section. They veered way off topic and had nothing to do with this Facebook/Message Board discussion on the differences between the two.
I see you are new here. Welcome to my website. Let me explain a little about it, and then I will tell you about the Facebook group. I started the site in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If it applies to you and your spouse, there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD- now called YOUNG onset). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
One of our members started the Alzspouse group on Facebook so members could show pictures and videos and talk about their families. It serves (or was set up to serve, a different purpose than these message boards, which are here to discuss the unique issues related to being an AD spousal caregiver.) There is no anonymity on the Alzspouse Facebook page, as everyone uses their real name. Look at the top of this page for the "Welcome New Members" topic. The last post on the last page was written by Deb, who explains how to join Alzspouse on Facebook. I am NOT the administrator of that page; briegull* is for now (she's looking for a successor), so she will be the one to let you join.
Hey, Frank - I joined FB because of the MP group; I'd really like to know about this disease from the perspective of the victim/patient. However, and I think this could be that I just don't know how to use FB, all I've seen so far is political discussions/fights (insult throwing), birthday wishes, other personal data, but nothing about how the victim feels with this disease. I hope I said that clearly. Just not the meat I was looking for. As I said, it could be that I'm not looking in the right places. Now, this place has all I want to know except what it's like from the AD victim's perspective - I just want to understand what goes on inside of dh so I can be more empathetic.
mothert - try to find Rick Phelps postings. He is the one that started the Memory People and he usually does a daily blog about what his life is like.. There are a few others that also post that have AD.