Many of us have been here for a very long time. I doubt many of us realized the finality of the disease when we started. We were annoyed with pranks, angry about taking on all the responsibilities of daily living. Incontinency occured. Isolation. Financial problems. Driving issues. Our own health failing. Now it seems one by one we are losing our spouses. We know how things will end and we are saddened by each loss. We are part of a very sad sisterhood/brotherhood of broken hearts and lost dreams.
I think I've been here a long time, and I think I've been AD-spousing for a long time. Yes, we do seem to be in a wave of losses. I still think I'll be at it for ages to come, and there I'll be, patting the newcomers' hands a decade from now saying "I remember THAT stage. We were in it for 5 years." I could be so surprised by my wrongness, but there's my state of mind as it stands for now.
em-when we welcome the newbies and suffer along with them it's like opening old wounds. We do it because we want to help as we were helped. I am glad that my struggle is over and ache for the rest of you.
I have to think something good can come of this. I have to. Maybe the fact we have been here and done this and have stayed to help the newbies is that reason. We are building an army of support for those yet to come. We certainly know treatments and cures are still only on the horizon and there will be many more needing our knowledge, support, and understanding before those are effectively available.
One of the main reasons we are here is that we can understand what the others here are going through - and can get advice, and give advice....
I got a lot of advice and love and hugs when needed, and now I'm trying to give advice to those who are just starting this horrible journey.
I also believe that we are helping thousands of readers who don't even post here - by stating the truth of this disease and what each of us has found that help our spouses and us to get through it.
I would not have made it without Joan's place......
I too continue to visit here to keep up with all the people I came to know during my journey. Each loss of a spouse reminds me of my own pain, but not in a bad way. It reminds me that there are others out there who are or have gone through the same things that I did. It helps me know that I have never been totally alone during or after my journey.
also agree that we are here for one another to help each other thru the thick and thin of this miserable journey. none of us could prepare for the devastation of mental and body that this disease reaps on the humans around it. there is something comforting within the distress to know others feel and react the same as we do. many here dont have the comfort of family for support so we rely on this family of friends to help and encourage one another. without it many of us would not have made it this far, thank you joan! if those of us who are into years of caregiving can support the newer members with ideas, advice, and hugs along the way then our mission is complete. this is the good thing about our journeys, that we can leave something of a legacy for those innocents who follow even if its only hugs and pats on the back for a job well done. divvi
I got a call from a dear friend whose husband died on Monday the 16th. I know J has read the site here but not if she ever posted. Her husband was admitted to th NH at the end of April and died Monday..it was peaceful she says AND he still knew everyone. A couple of months ago he started to go down hill with dehydration and not eating well or drinking..and falling was more a problem.. J is doing well however. She said the 3 weeks of NH care gave her a chance to become aquainted with being in the home alone. She said she had been doing this care at home for so long....and now she has to figure out what to do and build her life..and she feels at peace..he is and so is she. Her family is close by but for two who are away right now and can't be reached. She has a terrific support group surrounding her..
And yes, she will stick with our local ALZ group too..she will want to continue like those here do to be of assistance where possible.
I am not a newbie here now and have to say that when I was I gained a lot of insight and paths to take...and I am still learning. I don't know what we would do without Joan's invention here..
"We are part of a very sad sisterhood/brotherhood of broken hearts and lost dreams. "
and who else but someone who is living this hell could understand that?
I too am very grateful for my family here, and to Joan for giving us this safe haven. Many of the members who were here when I joined, now have *'s..... I am extremely grateful that you have stayed to help those of us who will be following in you path. I will never forget how welcomed I felt when I first joined. How I felt finally!! people who understand! Yet you didn't just understand, you rallied beside me offering support and comfort... and to this day you still do! Amazing group of people who are very dear to my heart ♥
I have "lurked" this site and board for several years before finally getting up the nerve to post. Since then I have learned SO much and felt the pain of everyone as my own. My DH and I talked the other night about a support group for me and he had no idea that I already had one....ALL OF YOU. We live in a small town and I would have to drive for over an hour to get to a "live" support group. I told him that you all are all I need at this point. I have never asked a question or made a rant that I didn't have support. I love you all.
I also appreciate all of you here. I pray that the many that came before me never stop posting. This site is like a family in the way not only do they care of each one of us, they are like the elders who pass all their cherished memories and advice down to us, the ones yet to graduate this horrible disease. It is a blessing to me to have the ones of you that have lost loved ones come back and help the rest of us. I think that may be the reason for hope. There is very little reason for hope most days, but when I look around and see what I have been blessed with while careing for my dh, I do feel hope. All of you are my hope for tomorrow. thank you all.
This is my first post even though I have been a member since Feb 2010. I want to say how much I have learned from reading your posts. I am so grateful I found Joan's web page. I check in at least twice a day because it helps me to know I'm not alone on this terrible journey we are all taking. My DH was diagnosed in '07 and now is in late stage 6. Thank you all for sharing your stories.
Welcome rpmaz, Keep posting and asking and venting and sharing. You will ALWAYS get the help and support you need. I have been here since 2008, DH diagnosed in 2007 and I am still learning.
This site is my support group. After DH was Dxd with Schizo-Affective Disorder(mental illness)in March 1988, I became his Caregiuver. Once we had things stabilizeda bit, at the suggestion of his Dr. I lookedfor a szup;port group. Around here back then there weren't many (any?) for specific conditions. The one I did find was for Caregivers dealing with several different conditions. fter askng about the groiup, if there were care for the s during the meegtings, etc. I asked about the meeting site and its accessibility. T^ht's when I wasasked what I meant. I answered that I have a physical handicap and needed to know about steps, etc. I was in formed that it might be better that I not join the group because my presence could be a deterrent' to others feeling free to participate for fear of offending me. Since then many more groups have appeared and grown. A recent check showed that there are a few new groups specifically for Caregivers of Dementia Persons, but time frames and distances are considerations which need addressing if I'm to go to any of them. Honestly...I see no need to do that when I canm come here 24/7 and they only meet once or twice a month.
Welcome to my website. Since you have been reading the posts for over a year, you are familiar with the "uniqueness" of this place - emotional discussions that only spouses can understand and relate to. There is so much more to the website than just the message boards. If you are not familiar with it, please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Thanks for starting this thread, Bluedaze*. I, too, come here and read everyday, but don't post much either. The things that I have learned on this site have been invaluable to me on my alzspouse journey. The love and compassion shown to me is deeply appreciated. As joang said, there is so much more to this website than the message boards, and the information she provides has also been greatly appreciated. Everytime a new * gets added to a friends' name, my heart breaks. It breaks for them, and for all of use still fighting, knowing that we will all have a * eventually. Thank you all so much, and may we continue to listen, not judge, give much needed <<HUGS>> or whatever else is needed and given freely for a long time to come. I couldn't get through it without all of you!
Thank you all for your kind welcome. Joang, I have been using all of your resources since I found your website. As a matter of fact, I found you when I searched Google trying to find information about any help that was out there for caregivers. These boards have been invaluable to me, the support that is offered here and the unconditional understanding has helped me on many a bad day.
To the ones who have lost their LO's, I am so grateful that you've stayed to help. My DH was diagnosed 3 years ago and I found this site shortly after diagnosis. He was in early stage 5 when he was diagnosed and now seems to be entering stage 6. It's unbelieveable what I've learned from the wonderful people here.