I would think that the more information we all can get the better. Why on earth would anyone want to kick you out because you are getting more information? I find it a little funny and kind of odd.
I think you should belong to any and all sites that help you dealing with the disease. There is so much knowledge to be shared, it is too short-sighted to limit oneself to one site only. If you do get thrown off of that site, it is their loss.
i do belong to other sites, i just dont share that with any of them. i like them alot and feel they are friends too but its not the same as spouse only like this one where our daily grind is like everyone elses here. i cant relate to caring for gma when that caregiver has a healthy spouse to help them cope. but i respect their anguish all the same. this in my opinion is the real nitty gritty of spousal caregiving, which has its very own set of rules and horrors. divvi
PatB-do you mean to tell us that your helpfull doc didn't give you the rule book? Do you ever feel that if it weren't for groups like this one you would be up the creek without a paddle.
I don't go to other sites. I have in the past several days posted on the cancer site to invite anyone whose spouse had whole brain radiation to join here. Are they nuts? Sorry to be so blunt, but I guess by now you know that's my style. DISLOYAL? Are you kidding me? Bluedaze, send them some of your humor. I can't fathom such a concept. Sounds like high school. Maybe elementary? What can they be thinking? Aren't there more important topics to be concerned with? I hope I never come across that group, or I hope someone scooped me out of it.
I've belonged to other dementia caregiver's sites. There is one I still go back to just to check and make sure that one or two people I care about there don't need me to check in.
No, it is not disloyal. And yes, Val, they are nuts.
While we are at it I also belong to several digital scrapbooking sites, a couple of knitting sites and one or two book sites. I've been active on all of them in the past. I'm not particularly active right now on any of them, but again, I check in from time to time, and I might get active on any of them within the next 6 months or the next 6 years. I mean, I might have a question... <grin>
bluedaze, Hey, you know how it is. It's hard enough to get a diagnosis or even a "kind of" diagnosis. And you think they should give me the rule book also? I couldn't even find a dr. who would tell my husband he couldn't drive, sounds like they "had a meeting" and decided, no, it wasn't in their job description to "determine" he shouldn't drive. Nope, no rule book.
But I found this site last year!!! Better than any old rule book.
This one really has me seething. How can people be so petty? I hope they stay on their own site. Can't imagine one person on this site voicing such an opinion. People should get all the information they can from anyplace they can. (But I'm biased, I think this has to be the greatest place of all.)
Actually I did bring one over. She has been my greatest ally and is eternally greatful to be here. She has found a place where others are walking in the same shoes. Now don't go getting me all mushy.
Bluedaze, I admire you and your friends here more than you can imagine. Too bad the world has petty people in it. Just makes us appreciate our friends so much more Sally
I feel like we need a group hug! I was gone this past week and missed you so much! And now to return to my DH in hospital. Thank you guys for being here!!
Knowledge is power...I think we might as well learn whatever we can wherever we can. That being said, I used to go on another site but there were a couple of posters that had some major control issues so I left. I have enough drama in my own life, don't need to add to it from a place where I am looking for support and information. This group I love!
I was on another web site and someone over there, suggested this one. I don't think we need to worry. The more information I can get the better off I will be. This is the only one so far that I've found that deals with the spouse. The other one was mostly parents and grandparents. Good information. Just not what I needed.
This is a great, non judgemental group. I don't even want to know about that other site, I'm staying put here. Thank goodness I didn't get caught up in that. I would have opted out, & would have had no support whatsoever. If it looks like a duck, quacks like a duck, then it probably is a duck.
Boy like we don't have enough to be stressed out about! OMG you're seeing another site. Duane put it so well; how short sited. I loved that,too funny :). When people have so little to deal with that they worry about where ever you are culling information they need to get a grip! This is about a journey, and not a lot of land marks to guide us even in the medical field. We need all the information we can get. This site gives me the unvarnished version. I need to know what I am experiencing has already been done, the docs are pretty general. Thank goodness Joan has given us a place to vent, question, cry, and just commiserate. I wouldn't give a rat's pitoot what another site thinks. I need to know from all of you this is normal. Normal for us that is. Otherwise I get scared. HotLips said it so well on Mash: " I hate to be scared, it frightens me."
I don't think it is disloyal. How could it be? When my DH was first diagnosed I looked for a website were I could learn about this disease. I did learn a great deal from other websites. When Joan started the website I joined in, and you newbies have no Idea how much work she put into it. And as you all know this web site's theme says it all. Our problems are unique.
AAAAAAAACKKKKK!!!! Big long post and it just went POOOF!!!! I'll try to regroup my thoughts.
I belong to another site, one with a national organizations name in its title. I still enjoy posting there. Lots of people I really appreciate and want to stay in touch with. It's where I first met Joan....when she was first discussing the inception of this site. It was obvious that spouses/lifemates/soulmates have unique relationships as compared to those caring for parent/grandparent. On the other site I would often have a question, or problematic issue that a majority there would say "gosh, I don't know what I'd do if it was my spouse with AD." Or they'd say, "I don't know how to handle that sort of thing. I care for my parent/grandparent."
I saw some recent remarks over there about being loyal to the "......." site for providing the forum, etc. And not to be unappreciative of them by steering people to another site. Well, I disagree with that. There's nothing disloyal about recommending someone visit additional sites. I think a few may have read the suggestions as telling new folks "oh, I know a better site." I tell new people over there who are AD spouses about this site. I tell them "in addition to this (the other) site I also visit (here)." It's senseless not to tell an AD spouse about sites that understand their position. Especially, one who IS being told by someone there that they "don't relate."
the more information we can get the better,regardless where it comes from. i belonged to another sight before this one,but i canceled out after awhile. the same ones would ask the same questions sometimes or keep telling the same thing over and over again,now i am not saying we don't repeate ourselves and sometimes often,but i just got a feeling,after a while,that one or two of the people were making fun or just wanting very personal details, that were hard to talk about about. i wasn't the only one who thought so. others voiced their opinion over some of the things that were said. you know sometimes it just takes 1 or 2 to ruin things for others. this was also when i was really having a hard time with my dhs diagnosis,maybe my feelings were just too sensative at the time. this is the best site for me. i am always trying to look up and research everything about ad that i can,but i always come here because we are all in the same boat and can relate to each other. sometimes i don't post alot,but i always read and can relate and learn. all of you are great and i am so thankful to you all,especially joan,for starting this much needed site. i don't know what i would have done if i hadn't found it and i highly recommend it. jav
I think we as caregivers have enough on our plates to not worry about being "disloyal" to a site...
I do also think that it helps to remember that the wrtitten word can be misunderstood perhaps more easily than a spoken conversation.Many people have difficulty saying exactly what they mean and words can be misinterpreted.
Having said that I think that all message boards have unique qualities and that it makes sense for us to check out as many as we want. Each can help us.Even on the best of sites there are times when threads go off in directions that may not be of personal interest and so it is helpful to look into other sites.
For me personally,this is where I come to learn from people who I have no doubt are experts... spouses. Anita
I think there might be one more thing going on "over there" (wherever "over there" is). A forum requires a certain amount of activity for it to be healthy. They (whoever "they" might be) could be seeing their forum getting smaller as this one gets bigger, and it might be scaring them.
By the way, there is also the other side of the story. As this forum gets really big there is a downside to that too. I love that when I come here there are always easy to find threads I have not read, but there are others, I am sure, who are already seeing this group as too big.
One of the things I like about this group is that we all recognize that the "daughters" are hurting. Pain is pain. It is different to lose a spouse to this disease and there is no question that what we are going through is different from what they go through emotionally. That is why I love this place. But they hurt too, and we understand that.
WOW!! Ladies, I wasn't aware of the "site etiquette police". Where does anyone get off trying to limit your knowledge of such a dreadful disease. Had I not found this website I think I would be sinking lower into the AZ abyss. You have given me and others so many answers, suggestions and kindness to help cope with the everchanging characteristics of our LO's suffering with AZ and dementia. THANK YOU, THANK YOU, THANK YOU.
As for the others, let them keep their heads in the sand or go back to high school, whichever.
So far I have visited another site only once or twice, and found nothing helpful. There's lots of help here. Also, I don't see how you have time to visit other sites. I find it difficult to read everything I want here. Finally, remember there are a few of us husbands of AD wives here. Our problems are the same with a few added issues peculiar to husbands having to take over cooking, housework, etc. We weren't trained for this when we were kids.
Yet, husband or wife, the basic spouse issues are the same. We are taking over tasks we never did before. For some of us it is cooking, and for others basic plumbing. I don't even understand when you call a plumber. The last time a toilet needed a minor repair my husband was still able to do that. He put up the most recent shower head and that was only at the end of last year. He shocked the living daylights out of me last week when he fixed the towel bar that needed to be re-tightened. I didn't have a clue. Wasn't trained to do that when I was a kid. <grin>
The details are different. The partnership falling apart is new, and hard.
Some people at other sites do think it's disloyal, and once in a while, they go a wee bit haywire if anyone recommends checking out a different site. But that's only a very, very few of the members.
What really surprised me was that one of the people who thought it was a big no-no is one I have come to respect very much. She not only thought we should stick with that one site out of gratitude to the people who run it, but was also concerned that they wouldn't get as much funding if they lost members. I think that's highly unlikely ... they've got a gazillion members. (And I also noticed that the Admin over there pulled her thread as soon as they found it. I gather THEY don't have any problem sharing!)
I don't hide the fact I belong to more than one site ... I've even posted questions from this site "over there" (or vice versa) when the question seemed particularly difficult, and many members have rushed to help out. I don't hesitate to suggest Spouse if it looks like someone needs this site. Like Diana, I tell them both sites are very helpful, and both are very different ... which is true.
But I am expecting to get blasted, sooner or later. Good thing they don't know who I am ... :-)
I visited the other message board a few times as a viewer only, and found almost no help for me. Some spoke in a shortcut language that was over my head. I did like their humor discussion though. Still,when I need a good laugh, I'll go over and find a joke or two to read. This website is what keeps me going. I come here two or three times a day. I learn so much, and try to share what I've learned that might help someone. It is wonderful!!!
Marsh, my sons are more fortunate in that I made sure that both of my sons learned to cook as well as my daughters. The "boys" are now 36 and 45 and consider themselves gourmet chefs in the kitchen and love to cook (just don't volunteer for clean up afterwards - they dirty up everything in the kitchen!). <grin> My husband taught the girls to change tires, check fluids and add fluids on the cars. However, they learned to be Ms. Fix-its on their own. (Both are still single.) <grin>
unique 'set of rules'...well what meant to say is that after intense discussions, we have found some 'rules of engagement' here that seem to work best when dealing with an AD spouse, like, taking the keys when you see they no longer can drive safely regardless of the consequences or doctors input, learn to be non-confrontational (if possible) when they are 'looking for a fight'-admit to yourself the person you married is no longer here and the AD spouse has taken over thier identity, etc etc etc. not really 'rules' as we'd call it but sound suggestions maybe...divvi
Mary,if it got done, it may be one of the BEST advice books on AD! if each of us would put our 'best suggestion' for a newbie about what we have learned??? i am talking 'realtime' handson knowledge here. like - "confrontation from day one about anything doesnt work-they wont remember what it was about 5min later and or what was said or discussed so reasoning is out the door."
"Accept that your spouse has Alzheimer's and isn't going to get any better, that you can't help them hold onto what they were, and that what they say and do is not controlled by them, but by the disease."