Just over the last few days I have seen comments such as one regarding what one poster has done for all of us.
Another about discussing a certain topic on facebook.
Even after two years here, these comments are new and unknown to me. My ignorance? I thought Joan's community here was it. Are there groups within the group?
ABBY* There is a Face Book group called azspouse. It is a secret group meaning no one can know who is even in the group. Of course outsiders cannot see posts. It has this designation to prevent families or other folks from seeing what is said. Total privacy. If asked a member can refer you for admission.
I didn't realize that there was a secret society in which you have to me refered. I am seeing by the date on Abby's thread that it really is secret when it takes that long to answer her.. I was beginning to wonder why there are so few comments anymore.
It is not really a secret society. Just closed so you don't have to worry about who is reading. abby only posted yesterday. The other date by her name is the date of her DH passing. I have never joined the other group. I find I am getting what I need here.
I belong to both groups but find that I visit/post here more often because I am still seeking solutions to the new "challenges" that crop up wit my husband's FTD and behaviors. Because there are more members here, I feel like I have the opportunity to get a wider variety of suggestions, including those who also belong to the Facebook group.
I feel lucky to have both groups to help me/us through this journey.
Yes, we made it secret because this site is not. People wanted a safe place to post certain things where the 'bad' family members can not see.
The site was started as an addition to this site, a place mostly to talk of other things and get support. On Facebook people tend to be online more so the responses can be more immediate, more chit chat so to speak.
This site still remains the first site to come get the most in-depth help with situations.
I guess there is nothing wrong with a Facebook site as long as it doesn't supplant this site for information. Some of us don't use Facebook and I look to this site for both emotional support and practical advice. I hope that it doesn't stop. Like Jazzy, I had noticed the number of posts dropping, but put it down to seasonal or other reasons, not people discussing on Facebook what they could be posting here. And personally, I don't care if my "bad" family members do read what I post - maybe they would learn something!
I feel the same, if "bad" family members read this maybe they will learn something that will turn them around and they could become great support. If not, then that's their tough luck. I'm not a Facebook person either and I am concerned now that it will replace this site and so many will not get the support and much needed information on " how do you....?" Oh well, I've learned quite a bit here and maybe it was all I needed. With my DH in LTC now I don't have the hands on that most of you are experiencing and with not much being posted on the thread for those with spouses in LTC anymore , maybe I've received all that is available to me here. Maybe there is more on the Facebook site but I'm not going there.
I didn't know about the Facebook site either, I'm fine here, at least for now. The worst of alz and dementia for my dh is ahead of us. He's talking about driving again, I can just agree with him, maybe someday. Bonnie
A couple of years ago, one of our memebrs, whose husband has since passed away, wanted members to be able to post pictures, chat about non-Alzheimer stuff, and keep it private, so everyone in the world who has a computer, would not be able to read what was written. So she started a private Facebook group and called it Alzspouse. The way private FB groups work is that if someone finds out about the group, another member of that particular group must send an invitation to the new person in order for them to be able to join. I have never had anything to do with it. I do not monitor or administrate it. Charlotte took over as administrator when Clare cut back on her Alzheimer activities after her husband died.
It is true that anyone who goes to my website and this message board can READ whatever is written. However, no one can WRITE unless they sign up to become a member.
On this message board, you can be completely anonymous to readers. Readers will only see what you put in your public profile when you sign up to become a member. I always advise people NOT to put any personal information ( e-mail address, real name, where you live, etc.) in the public profile. You can choose a screen name that is obscure enough that no one could know who you are. I, as administrator, am the only one who sees the non-public profile with your e-mail address. As most of you are aware, I NEVER give out email addresses to members without written permission.
This board is very carefully monitored by me and my message board monitor. There is a “sticky” discussion labeled ‘Message Board Guidelines’ at the top of this page. I feel that this board runs smoothly, with members being respectful of one another, even in disagreement, because if there is a problem, such as an inappropriate post, a clear violation of the guidelines, a spam intruder, or an escalating argument, I take care of it ASAP. I must give a big thank you to my message board monitor, because none of this would be possible without her consistent diligence.
It is my opinion that there is value in both this message board and the FB Alzspouse group. On FB, because it is a private, closed group (bear in mind that anyone computer savvy enough can hack into anything),you can use your own name and post personal pictures. It is not bound by the guidelines of this message board, so there is more latitude as to what can be discussed, either related or non related to Alzheimer’s Disease.
The message board, on the other hand, is a completely anonymous (unless you choose otherwise), safe place to share your innermost thoughts, seek and dispense advice, vent your frustrations, and offer support as you travel this pot hole filled Alzheimer road. It is where the topics and information in my blogs, as well as other news and articles, and whatever issues you bring up, are discussed.
I hope this clears up any confusion anyone may have had about the Alzheimer Spouse Message Board and the Alzspouse private FB group.
Joan, my comments were not meant as a criticism of this website, nor of the Facebook site. I don't like social media like Facebook or Linkedin. Period. So I will not ask to be invited to the Alzspouse group, and I will continue to use this message board and your blogs for the support I need to look after my dH. And I hope that the support I have received to date will continue. This is a tough road, and I certainly can't do it alone. If I post something here, I know it can be seen by the world, and that doesn't bother me, because what I post could be or is public knowledge.
Jazzy, I would like you to reconsider. You have a lot to offer new members, even if you feel that you are not getting all that you need to here, or that you have learned everything you can. Your plight is very similar to that of another friend of mine, and I have been encouraging her to become a member here. She may be lurking now. She can learn a lot from your experiences.
Jazzy, the FB page doesn't replace Joan's site. Joan's is the place we all get help, advice,hugs and we can rant and rave all we want - with no one judging us. The FB page is where we mostly discuss other things - not just our spice' problems. It's sort of a 'get-away' for me, for a few moments - since I have no other respite.
You won't get better info than right here with this group on Joan's.
Jazzy as for long breaks between posting, the longer you are on this site you will see it comes and goes in waves. I was one of the most prolific posters when Dado was still home and I was feeling like I would not survive at some times. This place literally has saved me. So don't stay away we are all here for you. I also am not a Facebook person and hence have not joined up our comrades in arms there...
I've known about the face book site for a long time but my way of thinking is as I go through different experiences with hubby and post here and get the feed back and support that is enough for me. Plus I also look at all my experiences that I have share here as teaching tools for the next group of spouses dealing with these horrible diseases.
I try to read all I can about our plight, and this site is so helpful. I think of these young people (40's & 50's) and what they have ahead of them, when they should be enjoying their families and life. We all need advice from you that have already been there. Bonnie
As the one who set up the FB site, because those who wanted one weren't sure how to go about doing it rather than because I needed it myself, I can assure you all that it was not intended to be anything but an adjunct to Joan's site. I did, as Joan says, turn it over to Charlotte when my husband died, partly because I couldn't figure out any way to make people members without their becoming my "friends", and I really didn't need all the friends that engendered asking me to play Farmville etc. This was several years ago, probably about three when I started it. I have checked in on it from time to time and it seems to be running well in spite of an occasional spat. We used to have those here, too, guys! Newbies here don't know about them, but they certainly happened and occasionally Joan needed to step in and reinforce the rules. What group doesn't have spats, and factions? There are hundreds of people reading Joan's site, many of whom do not post. I still recommend it to everyone I encounter who might benefit.
Don't worry, Joan's site isn't going away. The FB site is no threat!!
Someone mentioned fewer posts and Coco was correct that they seem to come in waves. Also, I believe that as people reclaim their lives due to the placement or passing of their LO, they tend to post less and less or stop completely. This certainly has happened to me--it's simply a time issue. I'm involved in more things now and as we all know, there are only 36 hours in a day (get it)? :)
I am not posting as much now, DH needs 24/7 watching. He is into everything or trying to fall over or misplacing the bathroom :( Try to read when I can. And yes the posts seem to come in waves, some days more posts than other days. (((Hugs))) to all.
also I tend to think that there are a lot of members in the same wave of their journey, ie- all in a more common stage and tend to discuss those issues and support. I don't know of too many in end stage as long as we are. I think late stage 7 now going on 3yrs!! walking is nil bed mainly constant monitoring for bed sores, and general worry that any day I may wake up and find my beloved in the final wake of these dreadful last times. so sometimes its hard to relate or find support for various stages. it seems most of the spouses are passing rather quickly in the end stages, unlike mine who just isn't ready to go.i know Nikkis Lynn is in the same boat and doing so well thank goodness for her. its a blessing to still have him with me for now going on 14 yrs in jan, but the constant source of worry is a burden mentally. i guess i am one of the last of the mohicans as far as a true veteran here, a lot of the others have lost their dear spouses or have placed and moved on to their great benefit which i wholly encourage and admire. on the good note, my DH is easy to care for and has a pleasant disposition even in this stage, so i am grateful for this so much. it amazes me how so many can move thru the disease so quickly and others linger for decades, it will be a marvel when they finally can sort thru this horrific disease and give us answers. divvi
I too am not posting much now. Dh has been in placement for 16 months now, and it's only now that he is so settled and happy there. No dramas for me, just little upsets as one dear lady who thinks he is her husband, but staff now have that under control. Visits are pleasant quality time, holding hands little hugs.. some days he knows me some days he doesn't. Family have been very supportive, but they too have their families, work and lives....DD has been there for me all the way. There was a time when I would never have believed it would get some what easier...so many tears, I was nearly a basket case. Of course there's still tears, but now there's also more resting time....now I just need to get a life. It has been comforting to come here and get the help I needed, there's no way I could have done it alone.
Thank you Joan and to everyone here, you are all so special. Big hugs and blessings all around..
Divvi--I have no doubt that your husband's longevity is due to the excellent care you give him. It is somewhat of a paradox--we are devoted to our LO's and bend over backwards to ensure excellent care, but then that prolongs the illness. I agree that it is a blessing to still have them in our lives, even in their altered states, but the duration of the responsibility wears on one, to say the least! And you've been at it so very long--for me it's only been 8 1/2 years.
divvi, I honesty don't know you've done it for so long. I agree with Marilyn it is a testament to the wonderful care you've given your husband over the years. We're on finishing 5 years and beginning 6 and everyone in the field of geriatrics/dementia has told me he would have been dead by now. That is the paradox of providing good/great care. You are truly my hero (Nikki too); I just don't know if I want this to go on for many more years, yet the thought of losing him is devastating.
paradox indeed. we want and expect to give the best care we can, with the understanding that same devoted care will keep them alive and lasting longer into the disease. catch 22. but I think its important too to be able to know in the 'after' we did our best and whether they live 6-9 or 20 years its a testament to our desire to see them thru with dignity and love however long it takes. we all deserve to hear we are doing a good job even if the journey is shorter, its the same wear and tear at your heart mind and body. divvi
yes divvi this often strikes my heart, how the love and dedication that I have been able to give, and continue to, will make me feel later...that I can look back, (if that time comes), and know I did my best, and feel good about myself. I do know though, unlike you, I could not have handled him at home any longer.
Yes Divvi, I think it is a valid point that what stage we are in depends on how often we post. When I first joined, there were the same posters and we really connected. Sadly, most of their spouses are now gone and many do not come here anymore. Though I AM very grateful for those who have stayed and I do depend on them for guidance, I can understand the need to move on. Who can blame them?
Like you pointed out Divvi, not many here are in late stage.... and really, what is there left to say at this point? I am so grateful for every little glimmer of "my Lynn" and thankful for each precious moment we are given. A far cry from the majority of posters thoughts. Though I do try to offer support, the majority of posts are not ones I can relate to anymore.
If I really try I can remember the hell of the earlier stages, but it is really such a short time in our love story. I chose to not look back and spend too much time in those trenches. I served my time in hell and I have moved on.
It should come as no surprise that I hope Lynn and I have many more years together. No he is not the man I married, but I do still love him so! And yes it is true he is trapped in his own little world, but it is a happy little world. I do everything I can possibly think of to keep him safe and happy. Every single day is made better just because I am with him.
And yes LFL, Divvi, Coco and Marilyn, I can relate greatly to your comments about the love and devotion keeping them here. And Coco and Divvi, I feel it is vital to be able to look at ourselves in the mirror and know we did the best we could for our loved ones. This is what I told his doctors when Lynn was starving to death. I told them it was NOT them who had to live with these decisions, it was ME and I HAD to know I did everything possible to help him.
As for facebook, I left the group, though I do intend to go back at some point to retrieve my posts as a sort of journal. The group lost it's "intimacy" appeal to me. It got too large and I didn't know more than half the members. I am sure it is still a wonderful place for support, but I like here at Joan's better too.
As one friend wisely told me, "The only safe heaven we will ever have is the one we make for ourselves."
I am so grateful for the founding of this site not only for information and experience provided by caretakers here who have travelled the journey longer and harder than me, but their devotion and time.
The people on this site truly have hearts of gold. I appreciate each and everyone of you and the wisdom you have given me over this last year. With this said, I wish to personally thank each and everyone of you. Thanks so for very much,
We are in late stage and as Nikki said, what is there left to say at this point? I will keep him at home as long as possible with the help of hospice, some paid caregivers, and my DD who lives with us. So far he has no medical problems so this could go on for some time.
I don't post as much because I'm happy. I feel good. And that doesn't fit as well here.
I like my life. My wife is constantly interwoven in my life in what we are and what she needs now. I have accepted what's happening and that took a year and a half on my own. I didn't know that before, but I've known it for a while.
I didn't know what acceptance meant either. It means you are you. and your past is your past. and the meanings of life are given and taken by you as has always been the case.
I'm proud I'm the person Dianne Fellows picked. I'm proud that I worked hard to be worthy and I'm very happy with the stories and life we created as partners. I'm sorry she's being taken early. She's the one who loses here.
I beat Alzheimer's. I beat suicide. I told depression to F off and it finally did. I kicked guilt off the train. I talked to all my friends I care to about my feelings bluntly. I got up every single bloody day and went at every single issue whether it was the same one coming up again and again or not. I found and relived every repressed horror over and over again until I drained that swamp and there were no more. I've argued every frigging which thing backwards and forwards until every point of view got bored. And eventually there was just me and now and it's been like this for months.
I have a deep longing for her I doubt will ever go away. There is a quiet whirlpool where if I drift too close it will suck me in and I will go through my loss of her again. But that makes perfect sense and is reality and so I can co-exist with it.
I know the truth and it's that I'm a lucky man. I did not have two lives. I had three. One at home with my parents. One with my wife. And one selling fridges in Iceland. Who knows?
I truly hope every single one of us find's our way.
Wolf, you sound happy and I am truly happy you've made it through and come out the other side. Although many of us are still on our difficult journeys and have not come to terms yet, we would miss your wisdom and musings. So please stay with us and post when you want. I know many of us here would miss you. Besides, you show us it's possible to make peace or at least acceptance.
I have been on this site since 2008 and it has been a great help to me. Sometimes I have felt the need to just pull away from this and other sites regarding dealing with dementia. When I joined this site, we were just beginning the journey of having him diagnosed and I was terrified. Everyone here was a great support. Now that it's five years down the road from his FTD diagnosis, I find that i don't always have the strength to read the hardships of others at times. Especially if things are up in the air in my own life. In the past 4 months we have filed for bankruptcy, surrendered our house to the bank, moved to my grandmother's home to be nearer family members, had our car die of old age and then my husband's day care closed.
Today I found a day care willing to accept him after being turned down by others due to his FTD diagnosis. They never even met him to do an assessment. That angers me. Even though he has an FTD diagnosis he has never been aggressive or mean. He is mostly non-verbal and just needs to be guided to do things. He is quite compliant when it comes to changing him also.
Not sure if this makes a lot of sense, but I'm feeling quite sad/cranky/irritated about it all today. This too shall pass....I hope!
deb112958, I too hope this time of of turmoil and sadness quickly passes for you . It has always angered me that daycares, ALF'S and NH'S advertise that they accept alzheimers and dementia patients but then want to pick and choose which ones they will accept. In my opinion it is discriminating. I hope the new daycare works out for you an you overcome your sadness quickly. I know that is much easier said than done. (((Hugs to you))).
Deb122958, you have good reason to feel sad/cranky/irritated. Try to think of being near family, and that the new day care will love your dh and treat him well. Bonnie
Yes, deb, you do have good reason to feel as you do. This road is so bumpy, with potholes - and other things as obstructions. I do hope the new DC will work for him and you can get a little 'me' time. Lots of (((((((((()))))))))))).
deb, we joined here about the same time. It will be 6 years in January since DH's diagnosis and, thankfully, I found Joan's place shortly after diagnosis. So sorry about your financial situation. We all understand why you're feeling sad/cranky and irritated. Sending cyber {{{Hugs}}}}