Thanks, everyone, for your support. I have been dealing with a severely painful health issue, but that is only one reason for my absence. I do realize that I owe everyone an explanation, which I have been trying to write for months, but obviously have not done so. I do promise a more detailed explanation ASAP. Thanks again for your support. I have removed the offending posts. joang*
Totally understand why you removed the post, but it was heartening to read the kind way many responded to the hate. It was a good example of the patience that we learn as AD spouses and it elicited many positive responses to the website and our affection for each other.
The offending poster was likely a troll (per Wikipedia, "a person who sows discord on the Internet by starting arguments or upsetting people, by posting inflammatory, extraneous, or off-topic messages in an online community . . . with the intent of provoking readers into an emotional response or of otherwise disrupting normal, on-topic discussion, often for the troll's amusement). The most important rule for dealing with trolls is: "Do Not Feed the Trolls." Outraged reactions are what they feed on, so comments just encourage them.
Myrtle, I don't believe trolls do that much work researching their facts. Trolls do come on sites to feed on the reactions, I agree. But they do not research into an obscure widow thread from over a month back to get exactly the right point to make back to me within an hour. That particular person, I believe, has spent time here and knew histories. That was a grudge troll.
However, I undertake to not feed trolls in the future.
Charlotte, I was going to ask that as well. I don't think most of us know how to contact Joan. The old email address (joan@thealzeimerspouse.com) did not work for me. I finally figured out how to get a message to her via a "backchannel." (Just showing off my newfound knowledge of obscure foreign affairs vocabulary!)
Joan, Where can we get in touch with you or another person who can moderate the site if something like this happens again?
I don't understand why some of you say that my email address isn't working for you. It works when I send mail to it. Don't laugh....I really do send email to it as a back up when my personal email goes screwy. Anyway, I just haven't been physically up to attending to the website issues.I'll have Matt check into it. In the meantime, those of you who are having trouble......delete all of your old bookmarks related to my email. Then click on the "contact us" section on the new homepage of the website. OR delete all the old memories of my email web address in your browser. Then type a new message to me, using joan@theAlzheimerspouse.com as the address.
Tomorrow, I have an appointment with the specialist who should have a definitive plan ready for fixing me.
Here is what I am going to do.......I will be writing two different blogs. The first will explain what has been going on with my physical health. The second will address the emotional thought processes that I have been going through related to living my life "after Alzheimer's", including how I want to handle the website.
You all mean more to me than I could ever adequately express.
So good to hear from you again, Joan. As always, thank you for all you do for us--you are a blessing and a gift--and I wish you better health, relief from pain, peace, joy, happiness, and all good things. Many hugs! (((((((((((( ))))))))))))
Joan, good to hear from you but sorry to read that your absence was not due to you being busy, having a wonderful life! Hope that your health improves soon and thank you for all that you have given us.
Joan! Im so glad you dropped us a message about how you are doing. That said, I'm sorry to hear of your health problems. Hopefully you will get encouraging news from your doctor about the plan. I've thought of you many times and wondered how you were.
On June 05 a troll showed up and in response to me, accused the board of pushing out the member who announced they were leaving of their own accord. That person referenced my own comment on the matter from over a month ago in a completely different area.
I looked it up on June 05 to remind myself what was said by the poster in that announcement and noticed that that poster had not signed in since April 26, the day of the announcement.
Yesterday, after the thread was removed, I went to my own post and verified that no names were mentioned. In other words, someone outside would have had to study things posted for the last month and a half and draw the connections for themselves.
On a hunch, once that troll was removed, I looked up that sign on again - and guess what? That person had signed in after the troll thread was removed and didn't post. Perhaps checking to see if it still worked.
I didn't notice that as much, maybe because I was too balled up with someone doing that and too affected by the references to my own comment after that person had already left.
What I know for certain is that a month and a half ago one member announced they were leaving and didn't sign on since that date. The same day that the troll was removed, that person did sign on but didn't post. That's the coincidence. The person may be familiar with very old posts. I wish I had paid more attention to that. But they were certainly also familiar with all the posts just a month and a half ago. It was no troll. That is outside of probability.
The primary matter to me is the protection of the safe place. Without conjecturing what will or won't happen in the future, the safe place is here now and there are people here still struggling that were here when I first arrived. I was helped here and I choose to help protect and nurture it. I remember clearly how conflict was a threat to those that are made raw by these experiences but my strength has returned and I'm as ready to take up the sword as I am to offer stories and distractions to those on duty and thoughts and ideas to those trying to get back up on their feet.
About this person. I believe that we witnessed a whirlwind of reaction to overloaded torque. Like someone screaming in the village square peeing on absolutely everything in outrage to their life. I hope that person can come away from this because having a blow out is one thing, but moving into such an outlook as truth will not lead to anything good for them except living in a ball of hate. Most people expressed sympathy for them because to be a caregiver is to know the battles with the dark side. It overcomes some of us, usually in turning on ourselves, in this case in turning on everything. I hope this person has released some of this and can go on to finding something better for themselves than screaming at everybody else. I mean that sincerely. I can defend but I'm not qualified to judge.
I sure hope none of you think it was me. I often check in and read your threads but I do not sign in. I am very busy with Kevan as he is going through a bad time the last month but I am also getting out more for me. I don't comment now as I don't feel I have anything to continue but I like to read how you are all doing. I resented this person using me as as part of their put down and I agree with Wolf that they do know quite a bit of history. I don't want to keep going over and over this and will now have my coffee and get ready to go out for lunch with friends..
Well, I still think the person was more like a classic troll, or at least someone who if not a stranger to this site was not a regular contributor. And I do not think this is a sad, embittered person who should be pitied (as some people said), but rather a malicious troublemaker who has a lot of time on their hands and who is doing this for recreation. We should not allow such a person to sow the seeds of suspicion among us. We are good people who are helping each other to survive a horrible experience. At least, that's how I see it.
P.S. Glad you are getting out more, Jazzy. Isolation seems not to be good for any of us.
I was in the same place as myrtle and my post was more direct, questioning why they felt the need to post what they did since they didn't even like anything here or anybody here. I've been a bit absent from the site with everything going on with my husband, but when I read that post it really upset me because, even though I've not been on this site for that long, I have found a lot of comfort, great advice and support here. I definitely took exception to the comments and subsequent comments literally attacking each person who responded in a personal way and with what I perceived as viciousness. I'm in that raw state that Wolf talked about and I definitely felt the need to take up the sword a little bit. Probably no one knows this about me but I have a real problem when it comes to people who like to spew whatever they feel like behind the anonymity of their keyboard and computer. Everyone here is here for a reason. We all are looking for support, guidance, advice and people who understand. And everyone here is either currently going through it or has passed to the other side and working through that phase. Obviously, this got me all fired up!
Amber there was a person the first of the month that was posting some nasty stuff. Any of us that replied he/she posted negative things we had posted even years ago then attacked us regarding those post.
More updating from Joan: Although I am still dealing with emotional issues related to being a widow, a good portion of my absence from the site has been due to debilitating, constant, unrelenting PAIN from a sciatic nerve in a vice grip. I was doing well physically last year.....I even hired a personal trainer, and was getting stronger and healthier. Then one day, I stood up from the gym mat, and was hit with the worst pain I have ever experienced. 8 months, 3 failed sets of injections, two courses of PT, and more pills than you can count, I am basically incapacitated. I am waiting to see the surgeon (who cancelled my last apt. due to an emergency brain surgery he had to perform). If surgery is the next step, I am ready for it, because living in constant pain is a major interference in trying to rebuild my life. So that's part one of what I have been doing. When I feel up to it, I will write a real blog, explaining my plans for "life after Alzheimer's". I have a lot to say, but right now ,no stamina for writing. I love you all. joang*
Joan, So sorry you did not get to keep your appointment. When in the severe pain that you describe it is so easy to understand that you have no stamina. I hope the surgeon will give you hope for the needed relief that you deserve. Use your past excellent caregiving/manager skills to let the Doc. know that you need relief. Hope you can get well soon and remember we love you too.
I am sorry to hear about the sciatica. I had a similar problem 2 years ago. It was after I resume bicycle riding, the pressure on the spine was too much. PT eventually made the pain worse. I was lucky that a 10 day regimen of cortisone pills brought down the swelling which removed the pain and allowed for PT (and I've been doing Patates since to strengthen my back. Unfortunately your case is more difficult. I hope the surgery is successful.
The stresses of ALZ (or widowhood) when mixed with chronic unrelenting pain can have a very serious ending. Trust me, there is only so much a person can take. . . . Hope things go well for you Joan
The deaths were the easiest part. It was getting beat up for the 3+ years afterwards that has left its lasting impression. Probably best summed up by a Psychologist who actually told me I should NEVER share my story with anyone because "It is too hard for THEM to listen to"(!) Needless to say that was my last visit with him. But it was probably better than another Psychologist who asked me to describe the day I lost my family and when my eyes began tearing and my throat choked with mucus he stopped me and asked "Uhhh. . . is this bothering you?" I am the only person in the grief group who actually missed their wife's funeral. The BIL and funeral director in Ill scheduled it for the wrong week, but the funeral director still billed me for 'his services' . . . (I didnt pay) I found out my veteran Dad can NOT be interred in a National cemetery because they deny burials to people who have been convicted of treason or murder . . . But they would be happy to bury mom . . . (like I would separate them??)
Too young to be old (age 59) and too old to be young (cant run as fast or jump as high as I used to) but having had the life experiences of a very elderly person I am without peers my own age. This has me stuck in the middle without much future direction or interests.
I am completely bored at a (well paying) sinecure type job. This does nothing for your self esteem but it does beat being poor. . . . The ALZ years strips you of your future plans, so right now I am just treading water.
Hi m-mman, it's good to hear from you. Has it really been three years? I think you are doing exactly the right thing--just treading water, not trying to force anything. You have been through a lot, and I'm not surprised to hear that people don't "get it." It is a pretty common experience for those of us who have lost or are losing just one person...much less three. Good Lord. People just back off and fade away, and don't have a clue how to relate to us---and you've been dealing with it in triplicate. I think it's just going to take the time it takes...and you need to allow yourself that time...and not worry about your direction or interests. That will all eventually start to appear out of the mists...as the mists gradually dissipate. The ones who are gone will always be with you in your heart, but there is a good life with peace and happiness ahead for you. I feel sure of that, because I've lived it, too. (Not quite as traumatic as your losses, but within a span of four years due to death, distance, disability, and divorce, I've had nine family members pass out of my life.) Go easy on yourself, establish relationships only with people who genuinely nurture and care for you (in my case, that "person" is my dog, although returning to my old home and hooking up with my church again has been wonderful)...and I truly believe you will get your life back again, and that it will be good.
It's good to hear that you're still alive and kicking after what you went through.
In spite of losing the three most dear ones in his life. you found the strength and courage to be interviewed at the scene by KTLA, TV, because you said you wanted to raise awareness for Alzheimers disease. I watched the ten minute video on KTLA's website taken at the scene. you did very well explaining the horror of alzheimers and dementia, and that your dad could not be blamed for doing what he did.
I can't forget about this easily, but maybe I can look at it this way....Three people have gained freedom from a miserable life caused by a horrible disease..... I hope that you,Jim. will soon gain your freedom.....
M-mman. I have a niece who is 27. She grew up in a terrible situation. Her father was brain damaged when she was 2 and her mother (my sister) was not a good caregiver. They stayed in Florida to be near the husband's family who claimed, falsely it turned out, that they would help take care of their "beloved" brother/son. BIG MISTAKE to hitch up to their wagon. Alas my sister lied to me all those years and I had no idea things were as bad as they were. I live in southern Ca and was never welcome to visit. Anyway, I am getting to know my niece now since I have ended up supporting my sister and have had to help the twins. This one niece, who is the lone successful survivor of her father's brain damage, is finding a PTSD support group to be very helpful. She also has some books on the subject and is slowly finding her way out of the morass. I haven't tried it myself yet, but am thinking PTSD is more relevant to our situation than plain old grief. FWIW.
My goodness, I just signed in and saw all the posts about someone posting something not good. It sure was not me. I don't know what I would have done without all the support I had while going through this journey
Joan I am so sorry to learn you are having health issues. Please know that we all care for and appreciate you
I often wonder what happened to those I knew on the board during my journey with my husband. It seems that I knew them like family. I still am in touch by phone to two different past members of the board
To those of you still on this journey just know you are not alone and that does help.