I've been reading this site for some time now and finally decided to join in the discussions. However, there is something that bothers me that I hope Joan can clear up for us, and hope she won't be too upset with me for asking.
I notice that she is asking for donations to "cover the costs of maintaining the site". This troubles me somewhat. Since retiring from a long IT career to care for my DW, I have partially supported us by doing freelance website set up and management. So I know that the actual cost of a very basic website such as this can be less than $20 per month. It seems that the royalties Joan gets from selling things here should easily cover that, even if they are quite small.
Why are donations needed? It would seem that there should be some disclosure of costs before anyone would donate to any "cause". Joan, can you be more specific about what your costs are? Or is your intent to make a living from the site? I really don't think that would be possible for many years, until you are more widely known.
I do not believe Joan is trying to make a living on this website. She is also a full time caregiver and hires some help to maintain this site. Also, she his using a programmer to help improve this site for all of us.
Are you a caregiver? of a Dementia patient? This site is a livesaver for those of us here and we are more than happy to contribute to the sites succes...she can only do so much of the actual work herself...
I am also a fairly new member, but I do not remember Joan ASKING for money. Some wanted to help offset the cost and she put her address on the site so we would know where to send funds. Why does this bother you?
Welcome Rono. I am not Joan, just a thankful poster here. Joan had to quit her job to take care of her AD husband and he had to quit his because of AD. They have no income because both are too young for SS. She is the sole breadwinner for her family and we all know how much money that takes, in addition to taking care of a AD husband. Hers is a fledgling business, struggling to stay afloat and she has not reached the point of making money from her books. Actually it is not even published yet.
Those of us who are helping her out a little bit financially are donating freely, because there is no charge, and we are desperately hoping she will be able to continue to keep this site going. Keeping this site going would require much more than $20. a month because she has to monitor posts and make daily changes. Basically it is almost a 24/7 job. Some web sites are put up and require no maintenance except occasionally. My daughter and son in law are also web site designers and I know of none they have to do ANY upkeep work on would be as little as $20. a month.
I am so thankful we have Joan here to help guide us through our situations.
Rono, if you had been reading the site, you would realize that Joan's son in California originally set up the site for her. She lives in Florida, so he can't drop in frequently to help. She is not a long-time IT administrator. Few of us are. If there is a problem on the site, she is forced to hire someone to come in and straighten it out. As it continues to grow, it presents more and more challenges and opportunities. As she travels to and from conferences, Washington, DC, throughout Florida, she is exposed to more and more information that we'd never know if it were not for this site. Each time she sets up a link to it, an assistant is brought in (for $$$) to set up the link.
I would suggest that perhaps Joan Gershman is, indeed, widely know and highly respected in the State of Florida for her work with the Alzheimer's Assciation, was an appointed delegate to a recent Conference in Washington DC, and was part of a small delegation that met with Congressmen to discuss the needs of Caregivers and Alzheimer's patients. The travel, rooms, meals etc., for the most part, are not provided. She has to pay much of these expenses out of her pocket. Even if basic expenses are covered, we all know there are 'extra expenses' . All the while, she is a Caregiver herself with no family close by to come in and help out.
She provides ME with endless pleasure, information, and provides an outlet for my pent up feelings and emotions. She is not a Public Corporation and has absolutely NO obligation to provide anyone one iota of information about how she spends her money. If she decides to use my gifts to her to get her hair, toes and nails done, so she will feel refreshed and renewed, then it was money well spent. If she uses it to bring in a computer geek to add a new information box to her side bar, she can do that as well.
I'd rather see her in a Pedicurist's chair wearing a fluffy white robe with a mimosa in her hand within days after she receives my gift.
Rono-- In IMHO this site is not a very basic, simple website. Joan has a great deal of reference material available, and links to more. There are continuous (not just daily) monitoring and updating to be one. The Zazzle market link carries many designs Joan developed herself. Some suggested we have a Memoriam sction and it's under construction. I know how many hours it took me to gather up the initial list, from the Discussion boards (I volunteered). There are costs because Joan cannot do it all, and must have some help. That's not free. Like most all of us, finances are a huge concern, and I believe it unreasonable to expect someone to dedicate their efforts to setting up and maintaining such a site solely at their own expense, especially when that person is also an Alzheimer Spouse. All that being said, welcome to our cyber home. We'll help in any way we can. Share with us your story;glean from our sharing help, caring, and good information. Joan will be along with an official welcome. And join us in our cyber 4th of July celebration at Stuntgirl's.
Welcome, Rono. You will find much information and support at this site. Your question was not out of line and I'm sure Joan won't mind explaining. Be sure to drop in at the cyber 4th of July party at Jen's.
Rono, while questions and answers are a part of this site to help with our caregiving efforts, the one you pose obviously has riled a few feathers with other members-as stated joan doesnt require donations but it was some of her own members who wanted to contribute to her efforts to maintain this site open. nobody is obligated to contribute and many here are under financial stress themselves and unable to forward a donation at this time either which we all understand. some who are in a better state financially may offer more than others- rather than ask for details about how /where she choses to distribute these funds, why not use your expertise ie IT and offer some assistance if possible rather than a monetary donation. there are many here who have their own expert knowledge readily available here for anyone who has questions. i hope you will find the knowledge here helpful if you are also a caregiver to a dementia spouse. regards, divvi
I have been trying desperately to rest and spend some time with Sid today, but this needs addressing. Later on today, I will set up a new thread that specifically explains the financial payments to the website. Anyone who has sent money certainly deserves a thorough explanation.
Thank you to those of you who realize the massive scope of the time and finances it takes to run this site. It takes a marketing, research, advertising, technical, financial, writing, and monitoring staff to run. And right now, I do it all, with the help of a $50/hour technical assistant and a volunteer message board monitor.
Me too!! Once I discovered this site I have received more information and encouragent that all other sources combined. It is well worth a donation here and there, and for my money, Joan can use it any way she sees fit. These are donationations as one can afford, not a membership fee. Thank you so much Joan!!! I hope you are able to continue for a Long Time. I trust this site and trust the info here more than I can express.
I sent Joan $20 when she asked for help. I'm one of the people she can't match up with real name and screen name because it didn't occur to me to tell her my screen name. I DO NOT NEED to know exactly what she did with the money. At the time she was having problems with the site and needed professional help. I wanted to keep it up and running and was glad to help out.
I sent her what I sent her for two reasons. I could afford the $20. And it is what I would have been willing to pay every year if this was a pay for site. I was glad she kept it up to us to decide to help or not because I know there are people who come here for help who can't afford to pay anything for it.
I don't know how much money she is spending on this site, but I know that although the software that runs the forum is shareware or freeware the actual site is not free.
Welcome Rono. You've come to the right place if your are a caregiver of and Alz Spouse. Most of us here, whether we post often, or just lurk in the background, have shared a little bit of personal info, such as type of dementia your LO has, what stage, and how long have we been caregiving. It certainly is not mandatory, but it's nice to know just the basics so we can relate. You can use the on-site search engine (Search then Users then type in a name) to find out what any of us chooses to disclose about our situation. Would you be willing, please, to share just a little info on you and your situation? I noticed that your account was created and your post went out all at the same time, and it seems curious to me. As for Joan asking for donations to keep the site going, that's just not the way it is. Joan has never asked for a dime from any of us, it is simply a choice that we made or didn't make to help her defray the costs of keeping this website up and running for us. There is so much valuable information here at our fingertips, we don't have to spend hours searching the internet. It's all here, and we appreciate it. Thanks for posting, and if you would be willing, we'd all love to know you and your situation a little better. Take care ~Di
This week was my second week attending a alzheimers support group meeting. This week most of the people there were widows and widowers from the last 2 to 5 years. The Moderater is with one of the local Hospicis Groups. Mostly all newbies this week, so I don't know if they just come once and stop or what. Anyway, I shared a lot of the information I have learned on this wonderful site and the moderator was pleased to have me and kept asking me my advice. The others there seemed to not have a clue about what they had gone through. I felt like a teacher explaining things to elementary school students. He invited me to print off some pages of our discussions and share with them at the next meeting. Had it not been for this site I would have been in those peoples shoes. I have monitored and posted on 3 or 4 other sites in the past but due to lack of useful information for me I am now exclusively with this site.
Rono, we are glad to have you hear and hopefully you will receive help from other friends here. You might want to try some of the other sites also and explore what works best for you. There seems to be several out there. Or, since you are into site design you might want to venture forth and start your own. I wish I had talent to do things like that. If you do, I will be glad to visit and comment. Best always.
Rono- Welcome to the site...once you are here for a while, you will learn why Joan deserves donations, and why she never ever asks for any donations. This is my homepage, and I spend hours here learning about eoad, not only as a caregiver, but also as a resource for information. I learnt the pain that caregivers have and the desperation of solutions to any particular problem. Joan bares her soul to us, and offers more than the whole alz organization. She covers topics that are taboo, spurs discussions about caregiving, and organizes one source of information...like the wikepedia of alzheimer's. Now, if I make a donation, I don't care where she spends it. I trust Joan and know that not only can she use the money, but also she is entitled to any perks that she can get. This site involves lots of work and attention, and she does it well. If we can help support it, I feel that she probably spends that money more appropriately than most charitable organizations. This site has attracted many talented people, and their opinions not only are free, but are usually dead on accurate...some of them are much more thorough than many neurologists, or other experts in the field. We owe this all to Joan......additionally, it has spurred other "mysterious" donations between members of this site, and I know of a few instances where money was sent to individuals in need......all this because of Joan's initiate. Read the posts, and pretty soon, you will be sending her checks too......
Rono - I am glad you have decided to join in discussions & you absolutely have the right to questions 'donations.' This site is only 2 yrs old and I have seen it (& Joan) grow with alarming speed. There are countless posts telling her to slow down, but she is driven and we are thankful for her efforts. I don't think she was a computer geek when it all began but she is learning fast. I also maintain an AD website but it is for info only, no chats, etc. I had to have a friend w/the knowledge to set it up for me, otherwise I'd have had to pay for it. I pay the nominal monthly site fee and now know how to make changes, but it is static while Joan's is incredibly active and I don't think she knows how to do it all or even has the time. Her son may do it gratis, but when it crashes or she wants to add or delete links, etc. I think she calls a local expert who has to be paid. More and more I think it is a full-time job and then she has her husband to care for, so those of us who have been around are happy to help for all we get in return. I have no idea how much profit she makes, can't imagine it's a lot. I've known others who have Amazon links, etc, but few are raking in much money & anything w/AD has a very limited following. I know, I've written two books on AD & altho they do sell, I will never make any money, the market just isn't there. Sometimes you just have to want to share your experience w/out any expectations of a return. If it blossoms the way this site does, then that's great. I think a couple members have helped her out personally doing things on the site, I'm not sure. But all of that aside, please post your personal AD situation, ask questions, vent, you have an understanding audience here. Bottom line, I think this was a good and appropriate discussion.
Rono, I have only been posting here since March. My husband has FrontoTemporal Dementia. There is a small group of spouses also dealing with this type of Dementia. Joan has been gracious enough to make room for types of dementia in addition to alzheimers. There have been moments since my husbands diagnosis when, if not for this site, these people, this family, I WOULD NOT HAVE SURVIVED! How does one put a price on that. We cry together, we make each other laugh, we support each other in ways that our biological families never could, support each other to depths that my closest friends could never understand. We can say things to each other that could only be comprehended by the members of this site. This site and the magnificiant woman who runs it, who makes it all possible, is PRICELESS. Please keep reading, it will be worth it.
Wait a minute................. Who IS Rono. One post, Just joined today. Something is not quite right. Rono, if you are there and reading our comments, would you let us know.
Nancy B and all, I'm glad you all picked up on this. If you read my post carefully, I was trying to ask that question without being offensive. When I said: "You've come to the right place if your are a caregiver of and Alz Spouse", I was trying to point out that this is a safe place for us alz spouses. When I said: "I noticed that your account was created and your post went out all at the same time, and it seems curious to me" I again was trying to point out that something wasn't sitting right. I also asked in my post for Rono to please tell us just a little bit of info, and there has been no response as of yet. It seems like 8 hours should be enough time to respond. I hope that this situation and Rono will be investigated, if possible, because I, too,think something is very fishy here. I would hate to think that our safe haven is being monitored by someone on the outside. That's scary to me. Happy Fourth all!
Okay, gang, I'm back and have read all of your comments…..
First a bit about myself: Yes, I'm a bonafide AD caregiver, first for my FIL for 13 years that then overlapped with caring for my DW for going-on 10 years now -- for a total of somewhere around 20 years that I've cared for someone (and for a while 2 people) in our home who were victims of this terrible disease. In that time, believe me, I've seen and experienced most everything that has ever been talked about on this website. Nothing surprises or shocks me about this disease anymore, except the attitudes of some caregivers.
The suggestion has been made by more than one of you that I need to "read more of the website". Well, I have been lurking here for months -- it is, after all, open for anyone to do that, even if all of you tend to forget that when you post private things. With the exception of the last few hours' posts, which I haven't gotten to yet, I have read everything on this website at least once.
I've also done extensive internet research on AD for years, and in that process, have found many websites, message boards and groups devoted to the subject. This site is not unique, even in its orientation to spousal caregiving, as there are at least 2 very active others, whose focus is the same, to whom I belong.
The only thing that IS unique about this website is the plea for donations. That is what troubles me -- that many of you, in your desperation for "friends", are taken in by this -- because this whole concept can and IS being done by others at little or no cost. That and the fact that all of you tend to forget that your "safe haven" is actually open to anyone to read whatever you write.
Sorry it took me so long to get back here. Remember that I, too, am a caregiver, and am also trying to earn something to replace my lost earnings from forced early retirement. I'm just a little bit busy. Ron
Rono- I think you mixed this site up with some other. I have never ever seen one plea for donations, and I actually had a hard time to find out how to do it. I read every post too, and Joan has never even mentioned that she needed or wanted donations. You ruffled my feathers with that comment, and I happen to know that some posters have even sent donations to other members, and that was done out of the kindness of their hearts. I am sorry that you also have been assigned the role of a caregiver, and I will be here to help you in any way I can. But, Joan is our hero and leader, and I will not tolerate anyone criticizing her nor accuse her of asking for donations. Donations here are voluntary, and if I could afford it, I would set up a trust fund for this site to be permantly open and funded. But until then, I hope that we will continue to willingly support this site because without it, many of us would not survive. Also, I resent your comment that we are desperate for friends....we chose our friends wisely and impartially, and if you think I am desperate for friends, you will find me a worthy oponent. This site is open to all and we understand that, but I will not let anyone accuse us of being desperate for friends and that we are taken in by this plea for donations. I suggest you reread the posts more carefully, because I think you are confused and probably overstressed by your numerous years of caregiving. I do not speak for Joan but for myself.....of course....but I am a happy camper here and I am offended by your comments.
Ron, I appreciate your taking the time to comment. I have to be honest though, you still don't feel right to me. As we have said, and you either keep missing because you're not listening, or you are trying to start something, is that there are no "pleas for donations" going on by Joan. You seem though, to have much disdain for this website. My question to you is this....why are you coming here now and trying to start trouble about some of the members sending donations to Joan? You claim to have been lurking for awhile, why now? I'll take an even bigger leap and tell you this: Stop being so judgemental. We try and maintain a supportive environment here, and sometimes there is heated debate among the posters, but none of us come here intentionally to cause trouble, as you have. As you belong to 2 other spouse sites, I wouldn't mind you going back there. Oh yes, another thing. I personally don't like being chastised by someone who comes out of nowhere and makes statements like: " it is, after all, open for anyone to do that, even if all of you tend to forget that when you post private things" and "That is what troubles me -- that many of you, in your desperation for "friends", are taken in by this -- because this whole concept can and IS being done by others at little or no cost. That and the fact that all of you tend to forget that your "safe haven" is actually open to anyone to read whatever you write" What exactly is little or no cost? They're either free or they aren't, you're contradicting yourself. And who are you to judge that any of us are "desperate for friends?" I find you extremely dis-tasteful. Please go back from where you came and stop tyring to stir sh#@ up here.
Rono. if you give me your email address, I will send you $25.00 to help you out in the replacement of your lost earnings. I noticed that you too were soliciting donations, and I would like to be the first...
I appreciate your response, Mr. Ron O. Thank you. I do not appreciate your input, and on this Independence Day in America, I am proud I have the right to say that. I am pleased to be able to inform you that you do not have to be a part this website. It is obvious that it bothers you immensely, and with all that you have to do between caregiving and work, I imagine you could use the time it takes you to read the "one million hits" that have come to this website doing something more to your liking somewhere else. My "friends" on this website are real, many of us have met one another in person, we visit by telephone and some of us have actually be able to cruise the Caribbean together. We all have friends in our personal lives, --- but few who understand the trials and tribulations that come with caring for a dearly beloved spouse who has been diagnosed with Alzheimer's Disease. With all of their ups and downs, I have to say you're the ONLY ONE one who ever demonstrated pure meanness toward us. You must be a very lonely man.
Folks, there was no "meanness" in my comments, except perhaps in you own minds, only facts. It is you who have made the cruel comments.
I had, in fact, emailed Joan this afternoon offering to donate my time and expertise to help with this website, but since she has chosen not to answer that email, I can only surmise that she does not feel she needs help. What does that tell you?
At any rate, given the nasty comments you have made to me, I am rescinding that offer and signing off for good. I do not choose to associate with people who are unkind.
Sorry you feel that way Rono. I forgive you, and to show my goodwill, I am mailing you a tube of Preparation H. That will save your life should you ever get hemmorrhoids. Good luck in your quest to find new friends and new associates...the prep h will help you there too.....
Sorry I fell into your trap..I should keep in mind that those who visit here are needy and are seeking a refuge.....RonO...I apologize..you can visit the cruise ship, and you will find accomodations on the poop deck very comfortable.
"What does that tell you?" It tells me Joan has impecable taste! Why would you think that Joan should drop whatever it is she is doing to repsond to you.? If you speak down to people as you have to us, I wouldn't be surprised if you're the no with no friends. You invited our honest comments by being judgemental and offering opinions that no one here asked for. Good riddance! Sign off forever, Rono. You're the one who was unkind!
Ron's last comments are so typical of an aggressor. They attack, and then suddenly they switch into victim mode, acting like the aggrieved party. Interesting dynamics to watch.
Joan answers all emails. I happen to know she is in bed today (which is a holiday) elevating a very painful knee. Again, jumping to conclusions when all the facts are not known!! Unless you live close to Port St. Lucie - I question how you could help her with her computer problems when they occur. Shalom.
Didn't we have someone post about a week ago with an ugly comment? I believe Imohr emailed Joan and it was removed before too many saw it. That post was to cause problems. Could it be the same person?
I think he wanted a different kind of fireworks to enjoy on the fourth of July...probably wanted to help Joan set up a spambot and a maliious virus to infect us all. I really feel sorry for his dw and his fil, since they have him as a caregiver......I can just picture it...."Why are you always asking me the same question? Why do you need so much help? My sympathies lie with his dw... to quote him..."Since retiring from a long IT career", I think he purposely left out the first two letters sh Thank you RonO for reminding me how much I love this site, and what I will do to defend it. For that, I send an extra tube, because I would hate to think that for you hemmorrhoids would be a fatal disease. Best of Luck in your new carreer.
Sorry to all of you for losing my cool over this. I apologize and completely lost my temper over this one...I should know better. It is obvious that the stress of caregiving has affected him and that he was seeking help, and I blew it...forgive me please.
's okay Phranque. I guess I did too, but it's because I know Joan isn't the person he set her out to be. She's an open book and highly respected speaker and advocate for us. He doesn't know her. He simply didn't know better.
I have put my heart and soul, along with 12 hour days into this website, and my heartfelt thanks goes to all of you who appreciate it so much. In the interest of harmony, I am closing this topic.