I have been watching those who joined the site in 2008. I've noticed that many of those have had their spouses with dementia pass on. Now we're getting a new bunch of people with newer enrollment dates. What I'm leading up to here is that I am one of those whose DH has probable FTD, and I enrolled us here in 2008. I am seeing his condition decline more and more. Now he's at the point where he's not interested in initiating eating, ie, won't go into the kitchen anymore and fix himself anything, and won't get himself something to drink during the day. He will eat readily and drink readily if I get the items and serve them to him.
We had another "talk" about this situation yesterday. He said he just can't taste things like he used to. He also said that he's just tired now, and tired of struggling any more. His weight has gone from 210/2l2 to 202 3/4 the other day. He mostly just sits in his recliner and sleeps or watches TV. He's clearly going down hill. He's on a walker all of the time now, in fact, ever since his strokes 2 years ago. He's incontinent (urine) every day, and wears disposable diapers.
Anyway, I'm posting this because it appears we're heading towards big things with him. Big things that go with the end of life. I can see the washed out appearance, and the weight loss. He isn't interested in talking with me, and I get mono-syllable answers.
Hanging On I am one of the originals. It has been very sad seeing the decline and passing of spouses. We all know that dementia is terminal-but it still hurts to see it happen by inches. My husband had FTD and I watched him go from confused to violent to comatose. No stage is easier than the next. Sometimes I wonder why I stay. It's like picking at a scab. You know you shouldn't but can't resist. With the help of this site and my daughter I have learned so much along this journey.
bluedaze*, the reason you're staying is because we really need you. I also joined this site in 2008. My DH's decline has been slow but it sure is taking its toll on my health. This 24/7 situation is just too much for anyone to do for this long.
I also joined in 2008. So many of us have been on this journey for such a long time; and others have lost their spice. My loving thoughts and gratitude go to all who have traveled this road before us and to those who are still bumping along with us. bluedaze, divvi, sunshyne.. - so many have been my lifeboat over these past years and I love them all. I'm so happy for the ones who choose to stay 'after'. Your care and concern- and most of all, your experience, is invaluable to all of us.
hanging on. me too. joined in 2008. seems like a lifetime ago. so many of our members from then have lost their dear spouses, and many more of us are also in end stages but 'hanging on' by a thread:) so many new comers here as well and its good to see the old timers checking in and offering wise and helpful ideas to those in distress behind us. there will always be a turnover with new folks joining and others making it to the other side with their * *stars. its the yin and yang that keeps this site so important. vickie we all have a common demoninator here and its a bond formed where we can come for compassion, venting, and knowing those who come here care. divvi
No, I joined in Sept '07, exactly 5 years ago! Seems forever-ish. Our big downhill spiral hit this year, 5 years after diagnosis, but had we seen the right person sooner, it would be 7 years after diagnosis.
I had to ck. to see if I was with the class of 08...it seemed so much longer. Sure enough I was in that class too. My dh was actually dx in late 2006, but I knew something was strange about him at least a year before I can remember how panic stricken I was before I found this place of hope and advice. Reading most of the post all the time, I truely think I had it easy compared to many on here.
Yes, I too am in the class of 2008 (Nov) but somehow I feel the other '08 alums are so much wiser and more experienced than I am. I feel like I am still learning the "secrets" of caring for a dementia spouse and try to offer what I've learned on this terrible journey but somehow I lack the wisdom of all of you-bluedaze, carosi, dazed, judithkb, marilyninmd, vickie, etc.
We too are now in a significant decline..dh (probable FTD) has great difficulty processing the simplest of information, needs assistance/direction/physical cues for just about everything. Not yet incontinent but tonight he wen t upetairs to pee (I was in bathroom downstairs) cAme back and then peed in his pants waiting fot me to get out of the bathroom. He didn't even know he'd wet his pants and the whole kitchen floor. I dread the days ahead.
Thank all of you who help us thru thiS journey, and espicially those with *'S who stay to guide us to the end. I will be forever grateful.
I just made it under the wire in 2008. I believe I had found the site shortly after its inception, but didn't stumble onto the message boards at that time. So glad I came back later, because this has been a key element in my support system. I don't know if I've said this before, but all of you dealing with FTD deserve special recognition. AD is difficult enough, but usually somewhat easier to manage.
LFL, you know that I think you've done a great job with your husband. Having your own physical issues has to be a great challenge, but people like you and Carosi have shown us that there are Superwomen on this earth!
Of course, thanks to Joan and to all the folks who preceded me here and who continue to post. Steve doesn't know it, but there have been so many members--people that I've never actually met--who have provided advice and inspiration that have guided my decisions regarding his care and given us both a better quality of life over these last 4 years.
I joined in 2008. My husband has declined, but he is still able to carry on a conversation about politics with his friends and make his own lunch. I was wondering whether coconut oil and MCT oil deserved any credit for his slow decline or whether it was just the luck of the draw. But the specialist saw it differently; she changed his diagnosis from Lewy Body Dementia to Multiple System Atrophy. Makes me feel like we will forever be in this confusing place where people don't see him as having dementia but he has significant cognitive impairment.
Funny that you say that LFL--I would have characterized you as one of the well-seasoned by experience wise people here. I guess there's an extent to which we all see ourselves as neophytes.
I joined in February 2008. It seems like I was here earlier than that. We have seen a lot of people come and stay a short time, others who stop coming when they lose their spice, and then there are those of us who can't NOT check in!!!
Vickie, bluedaze* is right, you have suffered so much, dear friend! We share so much....
I joined in July of 08 just as we were working toward a diagnosis. He was diagnosed with FTD. We believe he has the behavioral variant of the disease. Right now the disease seems to have taken away his cognitive and verbal skills. Physically he is still able to toilet himself and do most of his ADLs with cues from me. From 2008 when he was still able to drive, to today so much as happened. He attends day care 3 days a week and can never be left alone. No spontaneous speech anymore and I don't believe he even understands what is said to him at times.
I see so many of you that were here prior to 2008. My guy (or DH) was finally dx'd in 2006, and has declined significantly since. I didn't know about this blog, as I didn't even find Joan's blog until 2008. I was 'handling everything just fine on my own” (yeah, right). Anyway, found this wonderful family later that year, but just read and kept my distance. Didn't seem that I could add to what you were already covering, and you all seemed to be pretty tight-knit. By doing this, I never signed in, and only finally did so this past July. I look here several times a day, every day, and have for several years now, and when I clicked on my name, it looks like I've only checked the site out less than 20 times. Maybe I am supposed to sign in each time. Don't know if it makes a difference to the site or not. All I know is that, when I found you, so many of my insecurities of how I was dealing with my DH and questions that I had were cleared up, or at least shared by so many. What a comfort. Now I'm wondering how many others are just lurking like I did, and need to jump in and share. Thanks to so many of you.
janny I think most of us find our own level of comfort. I'm sure there are many who gain much just from reading and will join in when they are comfortable to do so. I remember feeling so overwhelmed when I first peeked in. Took me a while to figure out how to post and begin a new thread.
I joined in 2010 but wanted to make a comment about something janny said about "lurking around." I read the posts a lot but don't jump in and share my comments too often. No book or article has given me insight into this disease like this website has. I also felt like this site was a pretty tight-knit family and hesitated joining in. But if you've been posting since 2008 with each other, you would become family. Thanks to all of you who post your comments. I've learned so much from you.
janny & Mag, I felt llike an "intruder" when I first started to post because I too thought the group was very tight knit and besides, what did I have to add? Well, in desperation I made my first post and guess what??? Not only did people respond with very helpful information, someone actually dx'd what was wrong with dh (scabies) without ever having seen him! Because people were so helpful and forthcoming. I decided to post more over time and eventually found out I could contribute and help someone too. This site has been my only support group and I could not have made it this far without it.
You will participate at your own comfort level but trust me, there's enough room in this tent for all. New relationships are built all the time here.
well the only way anyone of us can become friends with all the other folks here is jump in and post at times. we are always on the lookout for new posters who take the plunge. we arent so tightknit as you think and very receptive to new people who want to join in and offer their stories. the one thing we have in common is dementia of many sorts. and spouses who have to deal with it without going nuts ourselves. :)
please, i k now i speak for all the older members and newer ones if you are reading and have hesitations know we are a kind lot of people who will welcome you with open arms. its no fun to be out there on your own. the support we give and recieve here is by far the best on the web anywhere.
please dont feel intimidated. i know everyone felt that way at first but once you are joining in you will feel very happy you did. right everyone?? and yes just by the virtue of the years we have spent on this site you do see same folks over the over and bonds form. its all good divvi
When I first joined this site, I joined to get support and learn how to respond to the different changes in my dh's condition and our life. After awhile, I realized I was reading and posting because I had become a prisoner in my own home. Leaving my dh alone to get out of the house was impossible for two years and this site was basically the only contact I had with the outside world except for my cleaning lady.
I joined in 2007 and read daily. I don't sign in unless I'm going to post and then find I seldom do. However I have gained much insight from reading all of your post. I hesitated for so long to enroll dh in day care but reading how so many of you found help in doing it I recently enrolled him three days a week. I owe thanks to all of you who shared how much help day care was for you. Best decision I have made in a long time. I will continue to read and attempt to post more.
Like a few others, I have 'lurked' here since shortly after my husband was diagnosed in early 2010. You have shared your experiences and so much wisdom in these (over 6,000) threads. There must be so very many people who have found courage and strength from you. This gift of Joan's creation will live on and benefit long after our journeys have ended. I cannot express myself as eloquently as Wolf, but I thank you deeply for what you've given me - the resolve that I can do this. Fiona68
Benefit of signing in to me is: you can see the threads you have read. When new postings on a thread, when you click on it, it takes you to where you last read vs scrolling down the post trying to find where you left off.
Had to click as well... joined Feb. 2008, 8 years after MCI diagnosis and AD diagnosis in 2002. Have learned so much from others who have posted here, have shed tears when stars were earned...but above all learned to laugh at the little stuff, wait patiently for a difficult stage to pass. As we are entering stage 7, know how the journey ends but have found peace with where we are,and would like to warp speed the newly diagnosed to this place. I am afraid each person has to travel their own journey but hopefully the "newbies"will realize that there are many of us willing to help in any way possible.
Hummmmm . . . November 2008 for me . . . . my how time passes when you are having fun :-(
In reflection it is getting much harder now, but NOT because wife is 'getting worse'.
Looking back over the past 4 years I see that I had a LOT of distractions. Job, travel, construction . . . Now it has all ended or been forced to come to a stop.
We have moved into our new house (which is good) but with no friends, no hobbies and job changes that now result in no personal satisfaction. I am settling down to a full blown AD life with no distractions and no escape. It looks like only a big uphill fight from here. Jim
Jim I hope you can find part-time work for stimulation and to keep yourself healthy. We all need relief from caregiving. Maybe you will find some way for you to accomplish this for yourself. There will come a day when you will be glad you did this for yourself, but I also know, from experience, how hard it is.
I’m from the class of ’08 also. It’s interesting how time flies. My husband, now 82, was diagnosed as probable Alzheimer’s 12 years ago, so we’ve been on the journey for a while. The coconut oil discussion started shortly after I joined and I have been very grateful for that. When we started the coconut oil he was at the “the same question 50 times a day” level. It took two years before we got back to that level again.
The one thing I probably appreciate most about this site is that it gives me some idea of what is coming next and I’m not taken by surprise by what happens. And I never would have known about Tena brand protective underwear—the only one that works for my husband. I think I’m going to have to go back and read some of Divvi’s postings as “Poop Queen”—it’s coming.