I found it not long after Joan started it, probably by googling Alzheimer and spouse (or possibly, Alzheimer and very depressed spouse, ha,ha!) I had "lurked" on the official Alzh. Assoc. chat room several times, but got tired of hearing how meaningful it was taking care of your spouse with AD, since at the time my DH was cold and distant on good days, and reminding me how this was ALL my fault on the bad days. I have a "live" support group which I love, but really feel i have benefited from having both forums.
It was suggested that I start a website myslef that would offer advice and an outlet for other people dealing with Alzheimer's ...particularly the husbands and wives. I always said our circumstances made OUR journey so different from that of children caring for their parents...and who could go back home and find a sense of normalcy in their days. Everything I had found up to that time involved caring for Mom or Dad.
I went to the internet and there it was! The Alzheimer's Spouse. Joan's site. It was perfect. I didn't need to set one up. This one was perfectly in line with what I needed and knew others needed. Been here ever since...about two years now or more?
The answer to your question Joan is that I searched on the Internet and there you were!
My dementia journey began a lifetime ago. I didn't know that help was available on line. I stumbled on a site by the name of COA-Caregivers of Alzheimer's. Though it was not specifically for spouse caregivers it sure got me through some very rough times. I met Joan at a rally but didn't understand how her site functioned (sensory overload for me). I sent spouses from COA to Joan's and was reprimanded for being disloyal. Like I needed that nonsense at that time of my life. About the same time I found the Alzheimer's Association Forum. Again, while I found the information very helpful it was not specific for spouses. Caring for grandma is not the same as caring for and losing the love of your life. I sent quite a few posters to Joan's and was never chastised for doing so. I have made life long friendships from both sites and hope to remain a contributing member to both. Thank you, Joan, for making my journey a little easier.
Looks like sunshyne and google are it. What did we ever do before google?? (I know there are other search engines, like dogpile, but google has become a generic name for searching).
I can't be certain but I believe it was through the Alzheimer Assoc. website. I have since recommended this site to a number of people on our Canadian website
Now that there is a spouse/partner forum on at the Alzheimer's Association site we have two places to go for information and support. I think that's great. With the ever increasing numbers of people afflicted with AD, I'm betting there will be more forums coming down the road.
Googled Alzheimer's and among the listing was your site. Haven't been on the Chat page for a while but DH is getting worse and I'm considering placement soon.
I believe it was on the alzheimer's assocation website. As many of the above have metioned, I was interested in chatting with people who knew what I was going through...as with a spouse. Thank goodness I found you. When asked where do I go for help, I always mention Joan's place!
Four years ago I was reading the Alz. Org. and Alz. Foundation websites but felt the advice didn't cover the husband/wife catagory so I typed Alzheimer/husband care in the Yahoo search engine. Now here I am. Joan this site is the best for spouses Sweet Pea
I found this site in 2007, the year DH was diagnosed, while reading the alz.org message boards. Joan, I think you posted something on that site describing this one which was fairly new then. I was thrilled. I stayed up all night reading every single post and printing out many of them.
As near as I can recall, I stumbled upon it thru Alz.org, and like everyone else it saved my sanity. Just to find you are not alone in this mess meant the world.
I knew I needed to learn more about this thing to try to get ahead of it. However, I kept reading about grand/parents with AD and it wasnt much help. "Pity me, my 105 year old grandmother no longer knows my name . . ." :-(
I was invited here by somebody and yes it was exactly what I needed to sort out my troubles and reach the acceptance stage. :-) Problems ahead sure, but at least now I can go on.
I feel like I have been here with you forever. I found you through a story someone else had posted elsewhere on the web. She/he alluded to your site - and here I am. I am sorry I do not remember the name.
I just posted the most updated information on the pod cast I did on Tuesday morning. Interested in any and all feed back - positive or negative - it is all valueable.
Thank you so much for all you do to help each and everyone of us - without you and all the others I have no idea where I would be today. I hate to think - maybe 6' under, who knows.
Google, and keywords care, spouse, Alzheimer's. Resources are helpful and can be found at other sites. This message board and your blog, Joan, are the BEST online help site of all. Thanks, for helping me to stay sane.
Googled late last fall when life was really falling apart. The difference we spouses have with all others - and the frustration when children and friends and even our church family aren't helpful was really really getting me down. There were days that i barely wanted to move and if PJ slept all day, so what. Now he can sleep all day; I have you folks to talk to and learn how you're doing. VITAL VITAL VITAL!!!
PJ feels very left out that he couldn't even get me a small Christmas present and now no Valentine Card. I still have a couple of his Xmas presents that he wouldn't open because he had nothing for me. With special events, how do others handle this?
The AZ support group seems to focus on those in Stage 6+ and on caregivers not spousal issues. Didn't hear about this site from them.
Thanks Joan and thanks to all of you who share your good and bad days.
I found it by Googling "Alzheimer spouse" just this past week (May 2011). Had tried in vain for months with other Alz. sites, which only seemed to mention parents, not spouses. I knew there had to be something better for me, and here it was all the time!
I was on the Mayo Clinic.com Alzheimer's Caregiving Newsletter. Decided to post and one of your members replied and referred me to your site. I certainly have not been disappointed.
I thought I had answered this, but evidently not.... Anyway, at the Alzheimer org site. One of our members mentioned it, and I checked it out.... LOOOOOOng time ago.
We have been getting a lot of new members lately - Brady, Samantha, Terry54, LoriRN, jcapo3, Flwoman, Sundown, to name just a few. Please tell me how you found this site. It is important for me to know how traffic is driven to the site.
I had posted on the Mayo Clinic Alzheimer's Caregiving Newsletter and acvann recommended this website to me. I still read the other but what I really needed was a site devoted to spouses.
Joan on another site I saw that they have business cards to promote the group. Do you have anything like this? Wouldn't it be great if there was a way to reach out to all spouses in need of the fantastic help here. Do you have any guidelines you want followed if we try to promote it ourselves? For an example, if I tell my doctor about it and have something physical for him to hand to the spouses.
I do have business cards, which I always handed out at every conference and seminar I attended. I still hand them out to everyone I meet, but I rarely attend conferences anymore - no time or energy. I leave them in every doctor's office we go to. If you want to give me your address in a private e-mail, I will send you some. How do they work it on the other site? Does the administrator send them to everyone who asks?
From Shirley's mention on Mayo Clinic. It took me a while to figure about posting, I am not the sharpest tool in the draw on this stuff. Started reading just before ur surgery. Find it extremely comforting and helpful. Just don't always have time to post :)
I found this site many months age, but I think I found it when I googled alzheimers and certain symptoms my husband is having. Different blogs would pull up. I have also read lots of other personal blogspots with spouses with dementia/alzheimers. Many follow this site. Hope this helps.
jaon, I hope I haven't breached any of your copyright or rules....I work with a geriatric care manager for DH and told her how wonderful this site is and that I would never be able to go through this journey without everyone here. Mentioned I'd been on several other sites but none were as good as this one because it is devoted to issues with spouses/partners which is much different than parent/child issues. She asked me to put together a list of resources that I found and identify the ones which were most helpful. I gave her a list and your website was at the top.
Hi Joan, I know you were mentioned on someone else's blog but I am not sure which one. I was googling and using ask.com with the terms early onset alzheimers, dementia, care-giving and blogs. I was looking at my history to see if I could pinpoint it but it doesn't go back far enough and I don't want to reset the computer right now to go back but I was very surprised to see how often I come here...by far the most...used to be nytimes, vh1 music or other fun... is that sad or not? Thank you for starting this site. I feel in some good company here.
No, that's great. Feel free to give out the website address to any spouse who can use it. I also give my card to any professional who works with AD spouses.
Thanks Joan......on the other site (MP) they posted the cards and said anyone who wanted them could contact them and they would send them. I am on my phone right now, but will email you when I get home. I would love to promote your site and help other spouses find the amazing support here! Thanks :)
I went to local Alz support group and only the facilitator was there. I'm sure caregivers couldn't get away. She said they seldom had anyone attend and suggested I go to Alzheimers.com and it was from there I found this group. So thankful I did because I've learned so much. I check this site several times a day and always learn something. Especially that we are not unusual and also that there is much more ahead.
Joan--I found your site in 2007, but didn't know anything about message boards at that time. Didn't come back until 2008, when someone had alerted me to the Alz Assn message boards. Once I came back, I was hooked. Based on my experience, I tell lots of people about the site and always make sure to mention and explain the message board feature. Don't assume people understand what it is.
joan i have been spreading the word of this website for sometime too. and i found hospice foundations maybe a really good source to give out website info. they deal with alot of dementia spouses too.