When I lost hubby the other day it was interesting in that I was concerned but running through the back of my mind was which members have lost their spouses and how did they handle it. It made me not "lose it" but handle the situation one step at a time.
There have been many other times when he has exhibit a behaviour and I'll think "oh **** went through that and this is what it turned out to be" usually just another step in this disease. Or I can throw something out there and sure enough one or more members have experienced it and have great feed back on how they handled it.
Then there's what coming "next" and by reading others posts can get myself as mentally prepared as I can. Though I have to admit the one that stick with me is the member whose hubby used to follow her around looking at her through binoculars.
The point I'm trying to make is that if this web site or others sites where not in existence what a tough, strange, scary road we would be traveling and how often I used what has been posted here. Can you imagine doing this without the internet?
TO AMBER.....Your evaluation of this wonderful site was right on!!!! If it wasn't for all of the information I have read here, I would still be thinking my husband just fell out of love with me or some vengeful and evil alien came down and inhabited his mind and body one night. Although every now and then, I still do think it is demonic possession like those scary movies they make. Jeez, I never ever watched them because they frightened me so much.......now I'm living it. But at least I have all you kind and compassionate people to turn to for more advice as the stages move on. I've learned a lot here and know there is so much more I need to prepare for.
Amber--I have posted this before: Steve's Dad had EOAD that started in his 40's. My poor MIL had no Internet to turn to back then (1950's and 1960's), she navigated these waters just following her gut and doing the best she could. I have thought so many times how much more bearable my situation has been, having this website and others as resources.
I've been here at Joan's place for about 5 1/2 years. This is where I've learned to cope with this whole Alzheimer's thing and I can't imagine how I would have made it without being here. My fear is that as others ahead of me finish their journey and leave, I'll have no one to guide me through the very end stage. I'm so thankful to the ones who have stayed to help. Joan, if your journey ends before mine, please don't forsake this website.
I know I could not have made it this far on our dementia (FTD) journey without this site. I have learned so very much on how to handle things in the moment and then what I might need to do in the future. Every doctor we see asks if I'm in a support group and I tell them "yes". When they find out it's an online group they always tell me I would benefit so much more from a face to face" group. When I ask do they know one that is strictly for spouses the answer is always "no". I tell them nothing is better than this site and someone is always available 24 hours a day. They now ask me for the site's web address for their other patients.
And I truly appreciate that those whose journey has ended stay to continue to share their experiences, wisdom and advice. It is so invaluable.
This site has, I think given me even more than what you've all mentioned. I went from Caregiving by-the-seat-of-my-pants and gut instinct in the years of DH's Mental Illness to coming here, after he'd been Dxd. AS really did make a huge difference in getting me through-preparing me for "what comes next". But something even more happened. DH died a year ago July. Through all my life, I have been dealing with my slowly progressive neuromuscular disease, CMT, but never in all that time had I had contact with any other CMT patient. Last February after having been reading here the idea flashed--I wonder if there's a support group for CMTers. THERE IS. In fact there are several with different focuses. I now participate in 6. I'm learning so much , and sharing the things I'd had to work so hard to know, on my own. My experiences here triggered the thought and prompted me to make that leap. I've also found that some things I learned here have translated well in participating there.
Wolf has proposed 2 additional "Sticky"s, which would I think make AS more complete. The Blogs and Threads already take us from onset though care and through grief. One for sharing the recovery--building/rebuilding our AFTERs and the other a place for those who have completed the course and moved on, to check in once in a while, sharing what AFTER can be.
We have learned and grown at AS and become family in a special way. There is no on else but those of us here, who understands as we do what we are, or have been, going through. My experiences coming here are still enriching my life as I now move forward into the AFTER I'm building.
When I was talking to hb's primary yesterday he started to mention what I might have to deal with in the future (first time he has ever talked about it). I told him I belong to a remarkable online support group just for spouses where I have already learned possible things that could happen in the future. That someone has gone through most anything that can happen on this journey. Maybe I should have not said anything to see what else he would say - but I didn't think he would say much more.