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    I just want to caution everyone about privacy on this forum. I found out tonight that my other DD out West has been reading everything I post on here... apparently has been doing it right along since last year--when I found out she was doing it and asked her to stop. I assumed that she had stopped, but apparently not. This site is for AD spouses only, and for anyone else to be reading our discussions is inappropriate and an invasion of privacy... no matter how interested or concerned the person may be. DD emailed me to caution me about posting too much personal names and so forth...and a good thing she did...because now I know she has been consistently following me online. She did point out that anyone can get on this forum and read the postings--that mentioning how helpful the forum is, and recommending it to others will of course bring people here. (Which is what it is for.) But anyway, remember to be careful about what personal information you post, because you never know. I'll just add that this DD is one of the most caring, empathetic people I know--very wise--and being disabled herself, really understands what hardship is. But still.
    • CommentAuthormyrtle*
    • CommentTimeAug 9th 2016 edited
    Elizabeth, It's a shame that you feel you have lost your ability to freely express yourself here. That loss is not just yours, but ours as well.

    The anonymity this site allows us is, I think, what makes us comfortable to speak so freely. If we lose that anonymity, we feel the need to censor ourselves. Of course, anyone who knows us from the "real world" could probably identify us by our comments but I have always thought that the vastness of the internet would make it unlikely that someone I know would connect me with this site. May I ask how your daughter came to this site? Did she stumble on it or did you mention it to her?

    P.S. I just noticed that you deleted some of your comments. This site is very important to me, so with your new cautiousness and marg78's signing off (both of which I understand), this is turning into a sad evening.
    I had told her very early on what a wonderful resource this was for me. Had no idea that she would actually start following it herself, and when I found out she was, and asked her to please stop, I naturally believed that she had stopped. I will be signing off, too, as Margaret has. My reasons are obvious, I think.
    • CommentAuthorJazzy
    • CommentTimeAug 10th 2016
    I understand how you feel and agree with you. I would like it if we had to sign in with our password before we can read the threads. That way only those registered with Joan could read it.
    I have never told family or friends about this site and never will for sure now.


    This is the topic I expressed concern about several months ago. As I remember, few thought that it was a matter for concern. It is a very real concern, though, and it is a good idea to be vague with personal details while specific with AD.

    Please, fellow posters, don't act hastily. Your imput is of great value. Do consider altering the way you post to insure more anonymity while staying with the group.
    • CommentAuthorJazzy
    • CommentTimeAug 10th 2016
    I have been tossing around leaving for a few months now. I find that we seem to be talking more about grief and loss then care of our partners. As partners passed on or went into LTC there seemed to be less of those just starting this terrible journey. It was so different four years ago. So much info on caring. Not so much now.
    I have noticed that CoCo, Nikki and Joan pluss others have disappeared. Have they moved on to new lives with out dementia? Is this what we are supposed to do?
    I expect that a few of you will not be happy about my comments but I think I need to try to move on.

    God bless each of you.

    Jugs Jazzy
    • CommentAuthorWolf
    • CommentTimeAug 10th 2016
    Your choices are your own, your reasons are your own, and your reaction is understandable.

    Your handicapped daughter follows you here because you told her you post here. When you asked her to stop, she didn't and instead looks in to see more of how her mother is. She's not hiding anything because when she thought you were giving out too much information, she told you that. She's wrong. There's nothing that you've said anywhere that means we know anything but an Elizabeth in Ohio who likes New York. There are thousands of those.

    The reason you are considering leaving is because knowing that your daughter out west is following along spoils it for you to have this venue.

    "What a wonderful resource this was for me"

    It's time to break with the ideas of the past and give yourself every chance to find your new voice. It's time to stop taking things away from yourself because of the way life was and instead authorize yourself to have the things that are offering something for you right now.

    Your daughter has your back. She's been reading all year and only spoke up when she thought you might be saying too specifically what towns you might be thinking of going to. I'm sure it's annoying, just as I'm sure if she had any intent other than your well being she wouldn't have warned you of her fears for you.

    Your daughter out west has also had your back regarding your daughter nearby. It was many months ago that you shared some events and notice that nothing whatever came from that.

    I'm sure this is all highly annoying, but I urge you to consider using it to help break with the way things were and instead of taking your wonderful resource away from yourself - give it to yourself now freely. So what she's out west. Give yourself this.

    If you do go, know that I will miss you.
    Just a thought. We had a couple of members who ran into this problem a few years back. Rather than leaving the site, they re-joined the site with a different name and only their friends on this site (through e-mail, I think) knew who they were. As the "new" person, they didn't use personally names, places, or information that would alert other to who they were.

    This is an option, rather than "signing-off" completely. Everyone's comments and view points are valuable.

    • CommentTimeAug 10th 2016
    Elizabeth and Margaret, it will be our very great loss not to have you continue posting. In this increasingly detached world, your humanity is appreciated and needed. Will miss you hugely.
    • CommentAuthormyrtle*
    • CommentTimeAug 10th 2016 edited
    I'll miss you, too, Elizabeth. The place won't be the same without you. I still retain the image of you sitting in the "Yeats booth" in Ireland, listening to poetry. I normally wouldn't give unsolicited advice (yeah, right, myrtle) but since I will never be able to communicate with you again, I think you should consider moving back to NY while you have the chance. In my mind it takes a long time to develop the shared experiences that are the basis of friendship. It sounds like there are people there with whom you already have that kind of relationship. It counts for a lot when you are among people who smile when you walk in the door.

    marche, I remember your cautioning us about privacy issues. I think many of us do include may personal details in the context of explaining what we feel about our situations (rather than in the context of posting comments about AD). There may be little harm if we do not comment negatively about others, but I'm going to go over my old posts and edit them with your advice in mind.

    Jazzy, There are a bunch of new people (powdereast, RSA, Rona, bhv, lindylou, Heidi, Waning Moon, ladylimbo) who are either just starting their journey or who have posted comments about care issues. I hope you don't leave but if you do, you and Kevan have my warmest wishes.

    As for me, I'm staying on the site unless I get run off (which is not out of the question since I keep getting in trouble). I cannot adequately express how much I have learned and am still learning here.
    myrtle, so glad to hear that you are staying!

    There is so much more to the posts than just the details of living with AD. The way of writing, the coping, the extracurricular activities come out so vividly in posts that I feel like I know some of you as I would a friend. Perhaps because my husband is still alive and in AFL, I look forward to coming to this site just to sit around and smoke my pipe (not really). It is the year-round Christmas Lodge of sorts and I enjoy reading every post. Sometimes, I mutter things like "Oh, come on," "Good for you," "Pie in the Sky," or "My heart aches for you right now."

    A good friend of mine who has listened in person to my travails, said one time, "Go ahead and say what you are feeling. I am with you in this moment and feel for you. When we hang up, I have to let go of the sadness until we talk again, but it lets me be the friend I need to be to you without becoming too much of a burden to me." Her wisdom astounded me and so I have begun listening to the sadness of others' lives in the same way. And, I read the posts in that way too. But mostly, I read because I feel a real connect to the posters. We have been through something terrible together and that binds us in a way because we all mostly come to see life so differently than we did before AD touched our lives.

    Bless you all for sharing your inner most thoughts, situations, and coping skills.
    I settled in this morning with a cup of coffee for my weekly catchup with everyone here and am saddened that Elizabeth, Marg78 and Jazzy are leaving us. Your
    insights, advice and encouragement have meant so much to me and I know to many others as well. We are all in the same AD boat but not in the same place on this
    difficult journey - some posts and threads are more pertinent to our situation than others but there is always something helpful and instructive. I do understand the
    privacy issues and have always tried when (infrequently) mentioning this site to family and friends to only refer to it as 'my online support group'. Still, as Myrtle
    mentioned, if anyone stumbled across it and knew my situation, it wouldn't be hard to connect the dots as to identity - something to keep in mind for sure with future posts. Again - all the best to those who are signing off - you will be missed.
    • CommentAuthorCharlotte
    • CommentTimeAug 10th 2016
    Jazzy - for a long time I have felt like 'why am I here' since my husband is in this really slow decline. I have brought this up a few times the lack of activity.I guess the threads for 'spouse in LTC' and 'widow/widowers' is more active than for us still in the midst of the disease. I have learned so much from this site, what to expect that when things happen I know it is normal. For a long time the most activity has been you dealing with Kevan - until some of the new ones joined.

    The new ones are close to placing their spouse if not already have. I wonder if part of the rush to 'can't wait until placement' has to do not just being tired of this disease (which is the main reason), but to feel more a part of the group here now. (that thought just came to me).
    • CommentAuthorAdmin
    • CommentTimeAug 10th 2016
    I feel that it is imperative that I comment extensively on this thread.

    Privacy – I have said from the beginning that one of the main attractions of this forum is that it is ANONYMOUS. Unlike Facebook, you do not have to post your name, and no one needs to know who you are as you pour your heart out to those who understand and will offer advice and support. Sometimes they don’t offer either – they just listen, which is also what you may need at any given time. I have asked that you NEVER put any information – phone numbers, real names, etc. in your public profile that anyone can read. I NEVER give out email addresses or any personal information on any of my members unless I am given specific, written permission to do so. I cannot control who reads this forum. I can control who is able to post. If someone is harassing a member, is posting spam, or violates any of my posting rules, I can ban them from posting, and I have done so many times. If you want to keep your identity anonymous, it is up to you to not give out any details that would make it easy for someone to identity you.

    As for people disappearing – Over the years, as our members’ spouses have died, many have moved on to new lives outside of Alzheimer’s Disease. Others have stayed to offer the wisdom of their experience. It is an individual choice.
    Coco, Nikki, and I were mentioned specifically, so I will address our situations. Coco posts on her Facebook page. Depending on how much you trust the Internet, Facebook, and privacy, one can say that it is more private than here, because one has to be approved as one’s “friend” in order to post and read. I, personally, have steered away from making an Alzheimer Spouse Facebook page because of the danger of lack of privacy. Because of privacy concerns, I will not write here any more about Facebook and Alzheimer Spouses, except to say that anyone can start a “private” facebook page. I believe that you can follow Nikki on her facebook page also.

    Many of you have become real friends outside of this website and stay in contact with each other via email and phone calls. I am sure you can track down Nikki through those back doors, but I will not give out any information.
    As for me disappearing – I have had a terrible year trying to come to terms with Sid’s death. I have written extensively about my struggles and inability to write more until recently. I am here, behind the scenes, not only trying to rebuild my life and heal, but also working very hard on redesigning the website. We’re scheduled to launch next week.

    As for the focus of the website, its main focus will ALWAYS be on how caring for a spouse with Alzheimer’s Disease affects the marital relationship. My first blog of the newly designed site addresses this issue. But the fact remains that I and many others have transitioned to widowhood, so there will also be a new section on my Widow’s Journey. I apologize that it has taken so long for this to come to fruition, but honestly, my mental and emotional states have held up the project at various times because I was too emotionally distraught to write what needed to be written. I have a meeting with Matt, my computer design expert, on Friday to go over final details. I have not sent out publicity notices or emails concerning the new design because I kept running into delays. Once things are up and running, I will be doing some very heavy advertising.
    I can assure you that the site will be relevant for ALL ALZHEIMER SPOUSES, whether you are still caregiving or have transitioned to widowhood.

    To summarize:
    I do what I can to keep this site as anonymous as possible, but it is up to you to keep your private details private, so no one will recognize who you are.

    Some people choose to leave after their spouses die; some choose to stay and offer advice. It is an individual choice.

    Some people have chosen to post on Facebook, as they feel it is more private. I disagree, but that is also a personal choice.
    The newly designed website will continue to focus on helping spouses of Alzheimer patients cope with the challenges and changes the disease brings to a marriage.

    There will be a new section on my Widow’s Journey, the purpose of which will be to help Alzheimer Widows support and learn from each other through my own experiences.

    I hope this clears up any questions you have had.

    Please be patient for just a little longer, and please stay with me as the bugs are worked out of the new software.

    Thank you.

    I don't quite understand this subject. Why should I be concerned about someone knowing about me?
    What have I got to lose? Actually I'm kind of proud of what I have done in my life.

    I have to tell this little story as I think it relates to the way I feel about this.

    In the good old days, Helen and I were visiting our close friends, Louie and Lorene. It was a hot
    summer night and we were sitting outside, enjoying a quiet, moonlit evening. You could hear dogs
    barking in the distance. They were not really barking, it was more like howling. We would hear one
    in the distance, then one from down the street, then one from Louie's neighbor, then Louie's dog
    would chime in and he was quite loud. Lorene suggested that Louie put him in the garage.

    Louie refused to pen him up. saying his dog needed to participate in the howling. He was telling
    the other dogs......... "I'm Here Too"

    Now....... At this time of my life.......Older than dirt...... Nothing to do but post an occasional blog
    on this site like this one. And I'm telling everyone loud and clear ............ I'M HERE TOO........
    • CommentAuthorLindylou*
    • CommentTimeAug 10th 2016
    As a rather new person to this site (8 months, not 8 years), I want to say that I would not have joined if I had not had the opportunity to read the threads and discovered the supportive community you all had become. It took me about a month of reading Joan's blogs and a number of the threads before I took the brave (for me) step of joining this online community. And baring my soul. One of the first threads I started was "Wishing/wanting/waiting for things to end". Never would have been able to say this to a live group. Never felt judged by this group, always felt supported. I've received advice I've accepted, and other advice I've thought about and have not used, or used yet. I've given advice, and I hope, support as well.

    Jazzy, I want you to know that most of my interests are in providing care, as are others. Those who are very new to dementia may be finding it difficult to relate sometimes, because so many of us are so far into this journey - perhaps they might need to have more threads with others who are trying to cope at the early stage they are in? Perhaps they are really are missing the blogs that may be coming again soon that would give them issues to jump in and share. (Many of Joan's early blogs were about her absolute anger and fury at what this disease was doing to her life and that of her spouse.I remember experiencing that anger.)

    On the other hand I have been learning a lot from those far ahead of me, ( for example: Is it guilt or grief you are feeling when partner needs placement? And how the journey can continue past death, with grief and having to rediscover yourself). Advice, encouragement and support from experienced folks, folks who really understand when it feels like no one else does, is a blessing beyond blessings. I have appreciated folks who have continued on this page and continue to help the rest of us.

    So what about internet stalking? Just recently I was ranting about my being "shamed" on Facebook. My choice regarding Facebook: recognize it, rant about it here, forget about it. I do suppose here on this website, where I think I am somewhat anonymous, some folks, including family could find me and recognize me. And that is probably true of many of us. I feel I can say things here that might embarrass my partner said in any other context, or embarrass her if she could understand. I also feel I can also express feelings that might embarrass me. Should anyone outside confront me on what I say here, I can honestly say to anyone, family included, 'until you have lived this you have nothing to say. Everyone on this website is doing the very best they can in an intolerable situation'. I would also say, 'please leave the site, its not for you. I feel my privacy is being invaded. But right now, I need this site. Everyone needs space. Give me mine.'

    The day may come, when for my own growth I leave this site. I don't know. But right now I want to tell those leaving, I give you hugs and thanks for your support. And, you know, you can always come back.

    Thanks for the update, Joan.
    • CommentAuthorAdmin
    • CommentTimeAug 10th 2016

    Interesting that you commented on my older blogs and how they describe what I was going through at the time. And how those going through it now receive support from those older blogs. Interesting because............I really don't want to give too much away before the official launch of the new design, but the themes of my old blogs will weigh heavily in the new format.

    You have all trusted me for 9 years to provide what you need. I ask for a little more trust for another week, and then you can judge if the new format continues to meet everyone's needs.

    I have put a lot of thought into this new format and agonized over how to make it relevant to everyone. But as you would expect with anything new, there will be bugs to work out. Hang on for the ride!

    • CommentAuthorWolf
    • CommentTimeAug 11th 2016 edited
    The first thing is that I hope you do get back in the saddle again website or no website. The second thing is take your time. I thought you were crazy to put out the new format idea end of January and thought you might be setting goals for yourself. It was important stuff you did and it remains just as important today. Caregiving is a long and hard road; but, living in the afterwards is always the rest of our life - and my searches show all aspects of that is largely undiscovered country. In the meantime more people are going to face dementia caregiving in the years to come - not less.

    About internet stalking, did anyone notice how much people in our lives wanted to know more about Alzheimer's? They run away in droves. It's absurd to think that those same people troll through all the dementia information just to see what we said. Normal people avoid these things like the plague and that's a fact. And normal people have mostly boring things to reveal anyway. It's also a reverse that's normal for people who become more isolated in life to have such ideas.

    To Elizabeth and Marg and Jazzy, I would point out that true self empowerment isn't being confined by something we said or someone else said or did. True self empowerment is doing what I want. That includes trying something different and changing my mind if I want to. At any rate, good luck to all of us.
    • CommentAuthorRona
    • CommentTimeAug 11th 2016
    I have thought about what I post and it getting back to people but then I thought I don't really care. I have revealed things about myself and Lisa, yes Lisa, but nothing I have not talked to others about. I have said how I have been disappointed in a couple of people, but I have also told them that.

    I remember in one post someone mentioned that people need to understand what it is like being a dementia caregiver and it is alright to share the gory details, it is not betraying or demeaning to our spouses but rather helping those around us to understand. I don't mean going on and on about things but if they ask tell them.

    We are all different and for some of you it feels like a real invasion of privacy but I for one am fairly open sometimes I think too open so for me this does not bother me. I think the use of the word stalking is a little harsh more like a peeping Tom. So if somebody is secretly looking at you, you may be Embarrassed that they saw something you really didn't want them to see, but hey on the other hand someone is interested enough in you to look. Matter of perspective.

    It saddens me that some of you may leave this site because of it but hey you know what, maybe it is just the impetus you needed to move on. If you are reading this and are offended then I am happy because it means you are still here! Good luck to all of you who may leave you have helped me tremendously and I have nothing but admiration and respect for all of you. your input will be missed.
    • CommentAuthorRSA*
    • CommentTimeAug 11th 2016
    I've been here just a few months (I think--the flow of time doesn't always seem uniform for when you're a caregiver) but I've already met some remarkable people in this forum. I'm more grateful to them than I can say. I don't post regularly (it's a mood thing), though I do read when I can. I suppose I shouldn't be surprised that people with experience of this kind would be willing to contribute insights and advice so selflessly; that's built into caregiving in general, I think.

    George, I think people have different feelings about privacy, their own and others'. When I've written about my wife where it could be read by people who don't know her, for example, I usually don't mention her name. I think she wouldn't have wanted to be pitied, or to be thought of as battling against dementia, or to be the subject of any of the cliches that are used to describe people in her situation. She would have thought, in my opinion, that being a little bit anonymous would help preserve her dignity. That's just my personal view about what I think her personal view would have been--it's one of those things that's impossible to know, so I could be completely wrong. But I play it safe, for my own peace of mind.

    To those who are leaving the site, I've read some of your writing and I wish there'd been more time to get to know each other. I wish you well.
    • CommentAuthorCharlotte
    • CommentTimeAug 11th 2016
    WE have to remember there are some here whose family has used what was said here against them. For them it was tough to stay and post because of that. So there are reasons that some are concerned about others reading what they post. But, for the majority it is not that much of concern.
    • CommentAuthormyrtle*
    • CommentTimeAug 11th 2016 edited
    People leave this site for very different reasons. Some people leave because their spouses have died and they feel that talking about Alzheimer’s is holding them back from moving on. Other people feel that discussions no longer focus on the subjects that they are interested in or they miss members who left long ago. I can understand that and it doesn't bother me.

    But it does bother me when someone has to leave due to a sudden loss of privacy. George says he has nothing to lose and Rona says that loss of privacy would not bother him since he has already told people he is disappointed in them. That may be true for them, but some people DO have a lot to lose and a loss of privacy IS a big deal to them. As Charlotte noted, some people might have delicate family situations and their comments could be used against them. Or they might be denied access to some family members. Others might be in an abusive relationship, which could be made worse. I guess the only answer is to protect your privacy if you feel vulnerable. Unfortunately, this requires people to self-censor their posts and leave out many details.
    • CommentAuthorRona
    • CommentTimeAug 11th 2016
    Well said myrtle we are all fighting the same battle but we are all individuals with our own set of circumstances.
    Though I have not posted very often in recent months (almost 2 years), I still read every day. I cannot imagine that most "outsiders" would interested in our conversations. When I first joined this board most people referred to their spouses/partners as DW, DH or partner without using any first names. I guess if any family member cared to search, they could have figured out who I was but I never even discussed the board except to refer to "My online support group". My DD who lives with me found this group online and told me about it but I don't think she ever bothered to actually read it. I think if we are careful about what we post there shouldn't be much risk. If a family member is reading we could just tell them we don't want any comments about it.
    No one need fear about privacy on this website. I really doubt that anyone who is not caring for an alz spouse would care to read about all our fun adventures. I do not hesitate to tell it the way it was, or is, and not worried about anyone on this site....(I also carry a small arsenal of weapons, fully licensed, and not too worried about my personal safety. All the people I have met personally have become close friends, and I would protect them anyway I can, if need be. This website offers more help and advice that cannot be found anywhere else in the world.. It is well worth risking some personal info for all the benefits. As for family members who read our posts, well let them read...chances are they are not helping anyway....I hate to see anyone lose the great asset we have here and the strong supporting members that have cared well beyond expectations.
    I have a close friend in a very high place who will not hesitate to get involved if anyone needs help.....
    • CommentAuthormyrtle*
    • CommentTimeAug 12th 2016
    Elizabeth (if you are still reading), I hate it that after following your decision-making process, we will not have any way of knowing what happens to you. Since you and Mim are in direct contact with each other, do you think she could let us know what you decided to do - stay or leave? Mim, would that be OK with you?
    • CommentTimeAug 12th 2016 edited
    It's always good to see you here, Phranque.
    Yes, that's what's not good, that Elizabeth would lose the asset of being here, and that we, in turn, lose her support.
    I have a couple of thoughts about privacy: I once asked my husband, who was a writer, "How do you handle using your family in your writing? Yes, it makes your writing warm and personal, but do you ever wonder if it's fair to them? Sometimes you write things that could be taken as hurtful."
    He said, "If someone does something not so good, they're fair game."
    My other thought is that, for my generation, to snoop, to read other people's mail, to eavesdrop on conversations, was seen as a negative trait that bordered on the side of dishonesty. (A quick anger that was justified was not seen as negative.) Now people (female, I don't know about males) read other's diaries, for example, and think it's okay. I've wondered why. All I can think of is that it gives them a sense of power, i.e. knowledge equals power.
    Rambling thoughts at the end of a busy day.
    As I grew older I became very curious about how life events shaped my mother's take on the world. I loved her dearly and I think that love made me want to understand her. She never kept diaries, or even opened up much about her traumatic and sad childhood. I respected and feared her privacy but I longed to understand her better. Had she written on a site like this, I might have read it if only for the insight of someone I cared about so deeply.

    On the other hand, there are people who have a lot of time on their hands and unkindness in their hearts, who would search a site like this for tidbits to use as bait or blackmail. Some folks have a bigger "heart of darkness" than others. It never hurts to be vigilant for them.
    • CommentTimeAug 14th 2016 edited
    Knowing you from your posts, I can't help but think that if your mother had specifically asked you not to continue reading, as Elizabeth asked her daughter, that you would have complied. I think that's the rub for Elizabeth: a daughter caring deeply, yes; respecting privacy when requested, should have been, and meant, yes, of course.
    • CommentAuthorMim
    • CommentTimeAug 14th 2016 edited
    Myrtle, yes that would be okay with me, as long as Elizabeth agrees. I hate to see Elizabeth bow out of this site, but if that what she feels she must do, so be it. Her input will be greatly missed.

    I guess I'm not understanding how someone who is not a "signed in" member can read the posts...I don't think anyone I know even knows about this site, so I'm not having a problem (I wrote some pretty nasty/negative stuff in the beginning).

    How do they do that?
    • CommentAuthormyrtle*
    • CommentTimeAug 14th 2016 edited
    You don't have to be a member to read the posts on this site. I found the site when was looking for a forum and read it for a couple of months before I figured it would be helpful and that's when I became a member. I think there are two sides of the issue. One is that allowing only members to read the posts would limit casual or trouble-making readers. The other view is that if only members are allowed to read the posts, non-members might not realize that this would be a good site for them to join.
    • CommentAuthorMim
    • CommentTimeAug 14th 2016
    Wolf, I like the way you put it...the afterwards is for the rest of your life. I think that's pretty profound.

    And Joan, I don't think anyone has ever mistrusted you! If they have, it's their problem...
    HI everyone. The reason I do not post anymore...for I simply need to chew on the loss and grief and hurt less. It has been two years now since my Dado passed, and only now am I starting to see that I truly have a new life, and it is not a bad one.

    Sometimes I feel guilty for not offering my knowledge , yet I know it is really all here, to be found in past posts and archives if not daily. Please know those of you that know how to contact me if there is any question I can help with, I am there for you.

    I also dropped out of being the Alzheimers Ambassador for Hawaii, I did it for a couple of years and felt our trips to Washington DC really made a difference. But then, it just started to make me feel "stuck", re living it all, and I need a break.

    I rarely post on Facebook but do go there to check out things. The first year I posted each month a photo and memory of Dado, up until the one year anniversary. If you want to check it out, it is under Patty Fontanilla.

    I do care, and maybe one day I can spend more time with you all. I am heading off on a long journey to Ireland next week, a lifelong dream and this will be my first trip across the pond. My house is on the market, I am 61, and we shall see.

    Aloha, Patty

    PS I am free and not any glimmer of a new relationship., though in my heart I know enough time has passed. Yes lonely, but proud of myself for coming this far.
    • CommentAuthorCharlotte
    • CommentTimeAug 23rd 2016
    Have a great trip Patty. We all will be thinking of the fun and exciting new adventure you are going on.

    Not everyone wants to stay in the AD/dementia world after their loved on dies, I know I don't think I will. We appreciate those that do and respect/understand those who choose not to. But we do appreciate you checking in with us once in a while. thank you
    • CommentAuthorcassie*
    • CommentTimeAug 23rd 2016
    Thanks for the update coco,hope that you will have a wonderful trip to Ireland.
    You and Dado will always have a special place in my heart.
    Aloha to you, cassie.
    • CommentAuthorMim
    • CommentTimeAug 23rd 2016
    Patty, I'll have to find you on FB...maybe you'll post photos of Ireland! My dream (fantasy!) is to see Ireland, Scotland, Wales & England, but alas I have to live vicariously through the pictures/travels of others :(

    Have a wonderful time & be safe.
    Phranque!! Phinnally a post phrom you. Good to see you on the board.

    As to the topic at hand, I just sent this link to the daughter of a friend whose husband has been given the DX of early onset dementia. I told her to lurk for a time to see if this site can help her as it did for me. As Joan said, keeping our personal data private is our responsibility. But if one who is lost as to what do do, where to turn for help and the site is found for that person to look into, I don't see the harm in that. Additionally, even though one is not a spouse who may read the boards but not be permitted to post, I see no harm and perhaps a lot to be gained to educate others be they family members who need to understand what we are up against but those who need to gain insight so that they can find avenues to get help for another..

    There is great value in these threads for many. Hats off to Joan.
    • CommentTimeAug 24th 2016
    Privacy? It never bothered me!
    Fact: EVERYTHING (yes EVERYTHING!) you have now or ever had put on the internet is public. Behind firewalls, password protected, whatever, it doesn't matter it is out there.

    Any doubts? How about all the Academy awards emails that were made public? The political party emails that have been released? Or even the national security information that pops up on wikileaks? National security information, and you even come close to thinking that anything us mortals post is somehow going to remain secret?

    I was happy to share my true AD experiences because I want people to know that my ALZ experience is TRUE! It is not fictional, it is not enhanced, it is very, very real! A reality that the AD outsiders who bombard us with platitudes are never going to believe. But we believe each other.

    My presence?
    I check in from time to time but like others have mentioned, learning about the hurt and pains from those currently suffering under the yoke of AD brings back a lot of the pains and suffering of my own. While we all suffered, I dont think any of us realize how deeply scaring it is and was to go through.
    I reckon it being similar to a Nazi holocaust survivor watching videos or reading stories of current suffering from a camp. You just can take it anymore.

    I suppose as time goes by I will be able to recall my experiences and provide advice without feeling the emotional pains, but the trauma was inflicted over years and we cant expect it to heal up any quicker.
    • CommentAuthormyrtle*
    • CommentTimeAug 26th 2016
    I was thinking of this thread yesterday, when I wanted to post something about a family member. But what if someone in that person's circle stumbled upon this site and recognized me from my stories? (This is similar to what happened with Elizabeth.) My comments would surely cause hard feelings and strained relationships and I don't want to deal with that. In fact, I don't want to deal with a lot of things anymore - that's why I have the urge to retreat from the world. But I hate that I feel I have to muzzle myself when posting here.
    • CommentAuthorBev*
    • CommentTimeAug 27th 2016
    Unless you're looking for help with Alzheimer's or another type of dementia, who would stumble on this site? I found it by accident eight years ago. And does it really matter if they do? I don't care who reads the things I post here. I came here for help and it has helped me tremendously. What do I care if someone trolls this site to see if I posted something about them? If it's the truth, perhaps they should see it. Maybe it would give then some insight on their behavior and maybe, just maybe it would change.
    • CommentAuthorMoon*
    • CommentTimeSep 11th 2016

    Come back home. I, for one, miss your engaging posts. Many of the old timers have left Joan's, and while I wish I knew how
    they are doing now, I totally understand. However, I feel as if you weren't ready to move on just yet, and would have stayed with us for a little while longer.

    Your poor, loving daughter must be very upset that she was the cause of you losing this daily source of friendship and support.
    I have always been more of a reader than a writer, but really appreciated all of you who posted often. You were a tremendous help to me during my care giving years,
    and continue to be during my recovery years.