We are in that place where many of you have placed your spouse or they have passed on. The rest of us are just chugging along with not much going on major. Also, because the majority that use to post have place their spouse or lost them, I for one feel I really don't fit in. Plus, I got burned by the Facebook group so really do not feel like risking it again.
I still check here and post some but nothing that could get me into trouble with others.
Hi Charlotte, I don’t post too much, as I feel I don’t have anything to add that would be helpful to others. I do check the website, because there is a lot of great information here, and I feel empathy for everyone who is still battling these problems. I am always interested in reading about Elizabeth and others who have gone through the passing, and feel positive about how they are doing now. My husband passed two months ago yesterday, and I am having a very difficult time of it – I was one of the lucky ones - we had a good long marriage, but the last while, particularly the last six months and then the end were so hard that I would never wish him back to go through that again. I am trying to be thankful for the years we had, and to move on. I have always felt that you contribute so much – you have a lot of good information and common sense, and I think a lot of us have been helped by that. I have great respect for you and your opinions.
I am new to the this forum and I was thinking that no one used it. I read the older post and there is so much good information. I just miss the updates. I didn't even know there was one on facebook Bobbie
I feel like Charlotte....my spouse is still at home with a lot less drama than in the earlier years. I still have a very strong desire to share our experiences and offer practical and not so practical advice to those who need it, especially the newcomers. I've learned so much along the way through this site, my own research and my own experiences that I have a great need to share and try to help others on this journey. BUT, most posters now have either placed and/or lost their spouses and I cannot offer any practical suggestions since we're not there...yet.
I do miss the give and take and offering of suggestions and problem solving which this site was built on, but as Carosi2 I believe said, this website like life has lifecycles, based on who is reading/contributing. I would be very sad if new members left because they thought this was no longer an active site and couldn't get practical answers to their questions and/or dilemmas.
I visit at least twice a day but often have nothing to contribute because we are in a different place.
bobbie, ask any question you have and I will definitely make it a point to respond if I have any valuable tips. Don't give up on this site...it was the single best resource to help me get this far (8 years). I could NEVER have made it without it.
I feel like Charlotte - just chugging along for the most part. I've posted a couple of questions lately, & I sometimes come here just to vent (a good place to do it!), but I don't have much to offer much of the time. Dan had a tooth extraction today, which I was very uptight about, but I guess he's a tough old bird. Sailed through it just fine, with a little discomfort settling in this evening. Actually, by this afternoon, he didn't remember that he had a tooth pulled!! Just blows my mind. I ask him every now & then if his mouth is bothering him, he'll look at me with that "look" & ask why. Have to see how it goes through the night.
Other than that, at the moment, nothing going on. I check in here almost every day, & I notice not much new. Cyclical, I guess.
Charlotte, sorry if you got burned on the FB page. If it's the one I'm thinking of, that's hard to understand why...
One thing that may have happened is that in the 8 years this website has been up, most possible caregiver dilemmas have been posted and commented on. The gold mine here is really in the old threads where one can read as a caregiver worked through a problem with the help of others.
When we were early in the diagnosis I spent hours reading the old threads and making notes - and what a help that was, and continues to be. I really felt prepared for what I was facing after reading everything on this site, sad and frightening as it all was.
One could almost make out a flow chart of what to read and do based on the Fisher scale - the first being always, get thee to an elder attorney. Joan has a standard introduction to new subscribers - maybe she should add elder attorney consult to that!
I, too, read often but I seldom have much to add to the threads. I think I am also so far into this that I no longer need to tell the story, or the horror, or the wretchedness of it all. I noticed in the local face to face support group that it is really the same story over and over again with the details changed.
I guess we might say that the site has grown up. That doesn't make it less useful but perhaps more useful. Like a human who has learned to walk, run, ride a bike, drive a car, the kind people on the site have left a road map of skill losses as the disease takes its toll.
As to the FB page - all I will say is that FB people make comments that belies politeness. I gained much, much more insight here with far less drama.
I am still here, reading and checking in every day. I plan to keep doing that, to try to pay back to others with my support and (I hope) practical help for those still on the caregivers journey...and also for those on the survivor's journey. Charlotte, I read everything you post, and sometimes don't write a reply only because I am at the other side of the country and also don't know a thing about life in a motor home. But I love to read about your life--the weather in Washington State and all those kinds of posts are very interesting to me. Also your varied life experiences, and now how tough and resilient you must be to be cooped up in a motor home with someone with Alzheimers...and after everything else you've been through in your life. Wow. Just wow. And Mim, I promise you I am not nearly as whack-a-doodle as I sometimes probably sound like. I am looking forward to a cup of coffee, and was thinking it might be easier for you if we meet up somewhere you choose...perhaps that is as close to your house as possible, so you can get back to Dan without fighting traffic too much. (On that main drag we all love to hate.) Let's touch base on our phones or email and plan something--we live really close, so no need to over-think it. I did notice that the discussions have been quiet for a couple days. These things go in cycles...feast or famine sometimes. But as I said above, I am on here daily--actually two or three times a day, just to check---and I read every single post. I have not been responding to the ones about placement, because as you all know, our plan was always to keep him home with family care, aides, and Hospice. And that's what we did...so especially for people in those kind of situations I can be helpful probably. I'm not really the best resource for placement questions. As most of you know, Larry was dead-set against placement...you would have thought nursing homes or ALF's were Dante's Inferno or something, to hear him talk...and since I was twenty-five years younger than him, and a nurse with lots of experience in both hospitals and home care, I was able (just barely) to keep him home and carry out a reasonably decent plan of care. But I am not against placement at all, and it is absolutely one way to get the ill spouse taken care of without killing the well spouse. It's every bit as much taking care of the person...just in a different way. Survival is the name of the game. Our spouses are not going to survive Alzheimers, but someone we have to get them taken care of without dropping down dead ourselves. But everybody here knows that. And I agree with LFL that this website was the single best resource (once I stumbled across it) for helping me get through the long downward spiral of those fourteen years. So of course we will keep it going. Just know, everybody, that anything anybody posts is being read by me. I'm not on Facebook though...don't have any opinions about that.
Sorry for typo. "Somehow we have to get them taken care of..." Duh. And I'll just say hello to the rest of you upthread who I didn't mention in my above post--Hey there Jazzy, Gourdchipper, marg 78, bobbie, emily, and marche. Hang in there, guys!!
my husband had a stroke 2 weeks ago and isn't able to stand alone or walk. He is in the early stages of alz. I keep waiting for someone really smart to come along and tell me what to do. If he didn't know me, I wouldn't even consider putting him in a care center. But he does, we can still drink coffee and talk-----kinda weird sometimes, but that's okay.
But if I can't physically take care of him, we are an accident waiting to happen . We are both 78. I am reasonably good health, except for heel spurs. I think I would love living in a motor home. We did travel for several years, and it is still my favorite home. But where do you keep your Christmas ornaments and your old tax returns? Bobie
Jazzy, I am still here and check in daily. Since it was Labor Day weekend in the USA that could be a reason for lack of posts. Mini vacations and cookouts are popular for the holiday. I have never been on Facebook. I have reached my limit with all this technical stuff. I enjoy reading all the posts so Thanks Jazzy for waking up the board. Thanks to all who posted. It felt like good friends dropped by.
One fact is true - I have learned so much, more than I ever wanted to know from this site. Since we have the information I guess when things happen it is not a big surprise.
All our tax returns from 1971 to the last year we filed (don't make enough to file now) are in a lock box in my closet. Christmas decorations we don't do. We have some, but the never get put up. Really don't Christmas anymore any way.
And I guess I'll just say, "ditto" to all the above. I'm on at least once every day but have very little more to contribute. But on the other hand, I do want to know how the rest of my "friends" are doing. I think it's interesting how you can really feel you know people who you've never met--but have shared experiences.
And this forum has definitely made my life easier.
I check in too everyday but really feel I have nothing to contribute. I am knee deep in grieving and most people are not there yet or are further along in their grief. I still work from home, babysit with my grandchildren and take,one day at a time. The honest truth is I am grateful it is over. Transforming myself will be a process and it will take time. I think I am going to lose some weight and get my high lights done. I have let myself go and am just now starting to get motivated to improve how I look. I am cleaning my house --something I did not do very consistently during the ordeal and generally trying to bring more stability and order into my world. I did not realize the emotional toll his illness took and did not realize how emotionally bankrupt I was. These 4 months I have been slowly building my emotional bank up again but it is slow going. I have rested and then rested some more. It feels good not to be consumed and driven by this disease.
Hello everyone. I too drop in almost every day but don't feel that I have much to contribute. My DH has been in a wonderful dementia facility for over 2 years. I feel like whatever happens to him I already understand from reading all of the old posts. Like Marche, when my DH was diagnosed, I read them all, took notes, and then felt prepared for what has happened since.
Update on my DH; he's probably in early stage 7. He's had a couple of seizures in the last 6 months; latest was this past Saturday - when I was out of town. His cognition does not seem to be affected by it but he's still a little unsteady on his feet and seems to have lost some awareness. Possibly that's because he's still sore but we will see. Not sure why the seizures because he's off of all meds except Gabepentin & Celexa but, as we all know, this disease is a mystery.
Update on me, I sold our house and bought a small 2 bedroom, 1 bath house with 1/2 acre property. Lots of gardening to be done. I'm also taking a college class once in a while and, if I'm lucky, I'll have my degree by the time I kick the bucket! I was having a crappy month, so got my hair permed. Now I have this uncontrollable urge to sing "The Sun Will Come Out Tomorrow". Sure hope it calms down a bit before a family get-together next weekend. Ah well, I don't really care. I feel like I'm just hovering over my life - somewhat like waiting for the other shoe to fall. I start an interest in things but nothing compares to the heartache of every day without my wonderful husband. Ok, maybe this is why I don't start discussions. I feel so darn whiny all the time and have nothing at all constructive to say. But I care for all of you who are living with this awful disease and will help if I can.
I ditto everyone here. I can say I get several contacts a month on my blog from new spouses looking for support and I always refer them here for education and support. There is so much valuable information. We will breathe new life back in somehow. :)
Bobbie, I think you could use a home assessment...maybe your local Office for the Aging (or whatever it's called in your area), could either do this or point you in the right direction. You need some professional input and suggestions on how to keep both you and your husband safe at home. I'm just brainstorming here...don't know any details about your home environment...but maybe you could use a tub seat and hand held shower and an aide to help with the personal care...a bedside commode to help with toileting...a lift chair for getting him up easier...some different clothing to make dressing/undressing him easier. The list goes on and on. But you need to make sure that he is getting good physical care without you injuring yourself trying to do it. He may need some kind of physical or occupational therapy consult in the home. I'm thinking that your Office for Aging may be able to send someone to do the assessment (a job I used to do as a NY public health nurse), or at least tell you who you could call (some kind of eldercare manager type of person), who would be able to steer you right without being just a for-profit agency that wants your money. I'm also thinking, as so many have advised on other threads, that you need to make sure financial affairs are in order, with you having a durable power of attorney from your husband...wills, health care proxies, all that stuff...you need a consultation with an elder law attorney who understands these issues. If you don't mind letting us know whether you're in the U.S. or Canada...it would help us advise you, as the health care systems are different. We have folks on this website from both places.
CO2, I hear you loud and clear. One thing that still surprises me is that this whole process is not linear. It isn't just a forward process of getting better little by little, with each new day being a little better than the one before. Oh, no, no, no. That would be too easy. It's like moving onward is comprised of a lot of forwards, backwards, sideways, upside-down. Sheesh. I'll "see" you on the widows/widowers thread from time to time. I can see we have a lot to talk about.
We live in the US, in Texas as a matter of fact. I guess home health could do an evaluation. To be so old, I am so dumb. We have our will, and health care directives. I know I need to tend to get them updated. Right now, he is in a rehab hospital and I don't know what they think will be the end result. I am going over this aft. for a meeting with the speech therapist (?) about life after a stroke. I think I need a lift chair to get me up and going. Bobbie
I second Marche, the biggest gold mine is all the information here. No where else can you get it all.
I have tried to come back here and remind you whom I consider friends, that though I do not post, I do read, and would be there in a jiffy if I had the right answer. For me, the hurt and deep agony of losing Dado has to be put in a quiet place sometimes. Now that I do not caregive, I advocate, and really do enjoy and feel rewarded by that. My heart aches for so many of you.
Well I check in most days and read but don't post a great deal. It seems like when I want to post something, like now, Lisa will want me for something then can easily get upset that I am not helping her with it. this site has given me more information and comfort than anything else that I have found. I too feel it is like anything, the site will go in cycles sometimes with people who need and want to post a lot and other times not so much.
I feel that we are at a critical point in our evolution of this disease. As yet have not had any real physical issues as so many of you have had to deal with, Lisa is young and basicly very healthy but there is no processing skills left. So sometimes I feel what am I complaining about I do not have to deal with the incontinance issues or mobility issues. However as I mentioned in a post about a week ago I feel I hit the wall, just could not cope, this was a turning point for me. I am now getting help caregiver 4 hours a week and a day program one day a week but it is a battle every time as Lisa feels she is fine. I am feeling better but sense this could change in a minute. I know I am not fine and what I am doing is no more than a bandaid to be able to keep us going for as long as we can. Sometimes it seems just fine and at other times everything seems out of control.
So I need this site, I know that at some point I will have to place Lisa and I don't know if I can make that decision? From day one she said I am going to find you a new wife, I would get mad at her for saying that. She would also say I am ruining your life and I would tell her no you are not. She would also say put me somewhere. That seemed somewhere in the future but I have just realized that future is getting far closer.
So as you can tell from my ramblings, I need this site, the support and advice that you give.
Bobbie, the discharge planners at the Rehab. are mandated by law to send him out with a safe discharge plan. Use their expertise to set up what you will need at home. Do not be too "gallant" about all the things you are going to do yourself. Ask for, and accept, all the appropriate help you can get. Caregiving is just so relentlessly tiring and isolating. The folks at the Rehab. are doing it in 8-hour or 12-hour shifts with days off. You will be doing it in 24-hour shifts with never a day off. And you didn't mention it specifically, but make sure you get a Durable Power of Attorney from your husband if you don't have one already. It is crucial that you have that piece of paper so you can handle whatever financial decisions you have to make later. My husband gave me a DPOA in 2003, and it just sat on file in the county clerk's office for years. But boy, starting around 2011 when I needed it for making big medical decisions, for selling houses and cars, for banking issues, and for filing our taxes...it was invaluable.
I am still here almost daily too. I remember when the walls were closing in on me I got further down in the dumps when the boards weren't very active. It just made me feel so alone in the cra cra world of AD. It seemed to me that weekends were always especially quiet here. I agree that the holiday weekend probably contributed. WE will have a full moon around the 27th of this month. That should get some crazy stuff started here and in the world of labor and delivery..said the retired nurse!
Charlotte, I hope I'm not out of line addressing you personally, but your experience with Facebook - I surely hope it wasn't something I said! I've noticed we're no longer "friends", so if I insulted you in any way, please accept my apologies. I really can't think of anything though.
I don't post much now, because I am in such turmoil right now. I am researching so much on meds for behaviors. DH has been in a behavior hospital since August 18th. The meds are not doing it. They want to do ECT. I am all over the place with that. No one will take him until meds are stable. I personally think it is approach and the enviroment right now. He is a wanderer. Not escape risk, just walks and picks things up. He gets agitated there because the area is small and they won't let him walk for fear risk. Anyway could go on for ever.
I have the legal papers. Medical and financial. Talked to the case worker this morning and she is working on getting someone to come to the house and check it out. She is encouraging me to consider putting him into skilled nursing, at least for the first couple of weeks out of rehab. And I agree with her. If he can't stand up and transfer to chair or whatever--------------I am just spinning my wheels, waiting until we both fall. He told me this aft that he could stand and walk, but he only thought he could. This all seems so unreal. I keep waiting for it to end and life to get back to normal. It is still hard to believe that it will only get worse. They are going to give him some sort of dementia assessment in the next few days. Bobbie, the discharge planners at the Rehab. are mandated by law to send him out with a safe discharge plan. Use their expertise to set up what you will need at home. Do not be too "gallant" about all the things you are going to do yourself. From Elizabeth. It's strange you should mention this-----the emergency room phy(?) sent him home with his blood pressure way above normal and he was unable to walk. Bobbie
Bobbie, it is a sad fact of the hospitals today that they will sometimes try to send the patient home inappropriately if they think they can "dump" the care back onto the family. After all, sending a patient back to his family sounds very nice, doesn't it? Well, sure, if the family is capable of providing the care. But you are going to have to be very, very firm about refusing to take him home if you cannot care for him. If you are in a situation again where he cannot walk and they are trying to send him home to you (and you can't handle it) you have to simply refuse. It is hard sometimes, when they and maybe even the patient are pressuring you. But if you can't do it, just keep refusing. They can't put him out on the sidewalk, much as they may want to. It isn't worth your own mental and physical health...and to take him home to a situation you know you can't manage is only going to put him in an unsafe situation. Your emergency room physician may have been making some kind of a judgement call about the blood pressure and the meds he had given you for it. Sometimes medicine is an art, not a science. But if your husband could not walk (or transfer independently, I'm guessing), and you did not have the resources you needed to manage him at home, your best strategy would have been to flatly refuse to take him back. The ball would then be in the hospital's court. And P.S.......usually the easiest way to get a placement is from the hospital. If you don't like where they put the patient, you can always move him later. (Not saying that's what you need to do...just saying.)
Jackie, I am following your posts with interest. My oldest daughter is bipolar, and to literally save her life she had electroshock back in 1993 or '94. No meds worked on her at that time, and she literally would have died without the ECT. It was a horrible nightmare, but she was curled up in a ball with a feeding tube and IV fluids (she was 18 years old), totally catatonic. The ECT worked wonders temporarily...she came back totally to her old, pre-bipolar self. It lasted a very short time, and we watched with horror as she rapidly slipped back into all the hallucinations, paranoia, back to the locked ward, suicide attempts, violence...you name it.) But after that the meds started to work at long last. (She's still alive today, albeit with lots of agency support. Lives in Colorado by her own choice--nice Section 8 apartment, etc. I'm going out for a visit next week. She is the nicest girl you would ever hope to meet.) Anyway, Jackie, that was my personal experience with ECT. Would not wish it on anybody except in a worst-case scenario, but maybe that's where he is at.
I didn't know you could refuse to take them home. Wonder if that would have made the front page? At the time, my mind probable wasn't working at its best, if it ever does. Hope you enjoy your visit with your daughter. Should be nice and cool Our daughter lives about 9 hours away. \
Bobbie, it would not have made the front page. Once he is in the hospital or ER (even if not admitted) just stand your ground and tell them you can't do it. On Apr. 14 of last year, when Larry fell three times and had a complete change in his mental status--obviously a huge, sudden downturn had occurred--the ambulance took him to the ER. They did extensive testing, but the ER doc said they really couldn't find anything wrong. (No heart attack, no stroke, etc.) So he told me I could take him home. (Now remember, I was 25 years younger than Larry, and a registered nurse with at that time 43 years of hospital and home care experience.) Since Larry didn't know who or where he was, couldn't stand up or walk, was totally incontinent, and was so agitated that they had to have either me or one of their aides stay beside him every minute or he would try to get up and fall off the gurney...Oh yeah, right, certainly...I could just take him home. I said to the doctor (more politely than what I was actually wanting to say)..."Well, you may not have found anything wrong (!!!), but how could I possibly take care of him myself at home?" Needless to say, there was just no way on God's green earth. So they kept him in the hospital overnight, admitted him in the morning, and P.S....he had to have a sitter one-on-one for several days. After a week they discharged him to a Rehab. for three weeks, and after that it was home with Hospice services (jeez, I needed Hospice for myself...can't believe to this day that I survived the next four months till he died.) Anyway, they love it if the family will take the patient...and don't forget that doctors are notorious for not seeing the big picture (because they're more focused on the specific medical problem)...so again---yes, you definitely can say "no." And you won't see yourself in the morning newspaper. It is done all the time. If you can't, you can't. I live in Ohio now---we were in New York before. But it's the same everywhere.
I'm sad that I didn't know/think to "just say no". He couldn't stand up at all. Course most of all I wish I had the wits to say "give him the stroke shot". As a result of a lot of things, I didn't do, I have caused a big change in our lives. What did hospice do for you? Did you manage the most of it yourself?
Bobbie, no need to beat yourself up. You haven't caused a big change--his health problems have caused a big change. He is lucky he has you there to advocate for him.
Hospice at home bills Medicare 100%, and admission criteria can vary from Hospice to Hospice. They don't always require the six-month prognosis, so some of them can take a client with a dementia. The hospice I used here in northeastern Ohio provided skilled nursing, a social worker, the chaplain, a volunteer, home health aides, meds. from the Hospice pharmacy, and all the equipment we needed that we didn't already have. (Hospital bed, oxygen, transfer wheelchair, transfer tub seat, overbed table, transfer belt) They also provided adult diapers, wipes,urinals, lotion, body wash, gloves, heel protectors, and dressing supplies.) They came and picked up the durable medical equipment after he died. The equipment was in very good condition when delivered--nice stuff...not a bunch of junk.
Problem areas were 1) that they could only send the aide for one hour, five days per week--laughingly insufficient. My son-in-law came over every night to do the evening care and put Larry into bed. I hired a private pay aide for four hours one day per week so I get get the groceries, go to the bank, etc.. The Hospice aides would usually do the shower and fix him something to eat, and I had them toilet him one last time before they left. I did everything else--there was a lot of transferring and toileting to do, which got really hard as he weakened . And on weekends I did the showers. 2) Medication management was atrocious. I was dealing with lots of agitation and restlessness, and they just insisted that I keep trying different dosages and schedules of meds. (Ativan and Seroquel) that just were not effective. He was up night and day, went through periods of combativeness and resistance (tearing off his clothes and pooping all over the sofa was the worst episode), and they just would not start the morphine...which they should have done much earlier. They wouldn't prescribe it until five days before he died...and it was such a blessing to see him calm and comfortable. Of course by then he was slipping into a coma anyway. And 3) My five days of Respite, when they picked him up and put him in a nursing home, was great for me, but his care was sub-standard to say the least, and he came home talking gibberish, dusky-blue in color, noticeably thinner, missing most of the clothing I had packed, and with a bedsore. I was desperate for a rest, but not at that expense.
So a mixed bag, but our plan as a couple and as an extended family was always to keep him home. With me being an RN with a lot of background, I knew how to do it...and also knew when to holler for help. So for us it worked. I do have to say that this website was invaluable in keeping me going and in offering good, practical advice from people who have been there and who "get it." Even the Hospice folks did not "get it" the way spouses on this website do.
Elizabeth. Did not have to do ECT. Hospice came in and taking him to inpatient hospice hospital to get meds right. they will help with facility placement. They feel he has less than 6 months. But of course no one really knows with this. But they will follow him to the facility. They provide meds, depends, hospital bed, wheel chair. He meets the criteria for being stage 7. There are over 500 hospices in my state. Not all are the same. Sometimes you have to talk to many before you get the right one.
I wanted him out of the behavior hospital. They were switching meds pushing ECT. I know that he doesn't have long so hospice was best way. Most people wait to long to call them. Really hoping that this is the way. I am appalled at the way medical facilities will try anything to stop behaviors. It is Alzheimers and Dementia. There are behaviors. Everyone wants to give them Drugs for agitation, aggression. Do any of us want people making us do things when we don't understand or comprehend. My husband like to move around. If he isn't hurting himself or anyone why is that a problem. I ramble.
They know he has to be transferable to get in a facility. They will not make him to where he cannot walk like the behavior hospital did and he can only stay inpatient hospice for 14 days. Have 2 places that will take him after this. This has been a horrendous month. I thought the other years of this were bad.
jackiem29, I am so happy you found a good hospice willing to treat your husband and his behaviors. I am very happy that you did not have to make the decision to do ECT. In fact, I think the behavior hospital was wrong to be pushing you and your husband into that treatment. My opinion only.
I wish you both good luck with his hospice care and the new facility when he gets there. Sending good thoughts your way.
One thing for sure---a decision made is a good decision. This indecision is wearing me out. I am so glad you have a plan. Hoping it works out and you have some good days.
Back to the question of "where has everyone gone", well I still check the boards a couple of times a day -- but mostly just to keep up with old spouse friends at this point, as I seldom feel that I have any helpful advice to contribute now that I'm no longer in the trenches battling the disease. One thing that I have noticed is that there seem to be fewer newbies coming on board, which could possibly be accounted for by the increased popularity with younger people of "social media" like Facebook. Back in the olden days (seven years ago) when I joined this forum, it was like the only show in town, and it has endured thanks to Joan's tireless efforts and the success that she and her monitors have had in keeping the discourse civil and on topic for the most part, with a liberal dose of humor from folks like old don and cheerfulness from a few like GeorgieBoy. As others have pointed out, just about every topic under the sun, from poop to intimacy, has already been discussed and is available as a resource to new folks looking for information or advice, but the forum remains an outlet for venting or finding emotional support from fellow sufferers and those who have already navigated the road and survived.
Not everybody is on Facebook, and I suspect that this website offers much that a Facebook page doesn't. I think that we who have been in the trenches need to stay on the site to help others...the way others helped us. I think for myself, I will look at it as a kind of volunteer work...checking daily and trying to give advice or support where I can. For my own needs, you'll probably see me more often on the widows/widowers thread. Being single and alone in a way I haven't been for years is a whole new subject...yikes...out of the frying pan into the fire!
Gourdchipper and others are right that there are fewer new members on this board. I also see new members joining but not continuing to post.
Charlotte is right about the proportion of commenters whose spouses have died or are in LTC facilities. However, it would be wrong to assume that their comments are never of interest to those whose spouses are living at home. Although many of their comments deal with bereavement or LTC issues, others talk about their experiences when their spouses were living at home.
Anyhow, the increasing proportion of members whose spouses have died is partly due to the fact that so far, 2015 has been devastating. It seemed to me that many people had lost spouses recently so I did a rough calculation of members who reported that their spouses had died this year and compared it to the "In Memoriam" section of Joan's 2015 New Year's blog. What I came up with was 10 reported deaths in the 12 months of 2014 and 15 reported deaths in the first 8 months of 2015. Of course, this is to be expected since we are dealing with a terminal illness. The only way the overall proportion will change is to attract new members.
I suggest we consider whether there is anything we can do to encourage people who are lurking to join or to encourage new members to participate more. Any ideas?
myrtle said: "I suggest we consider whether there is anything we can do to encourage people who are lurking to join or to encourage new members to participate more. Any ideas?"
Perhaps we could encourage lurking newbies to come out of the woodwork and join in by "lightening up" our content a bit. It seems like it's been forever since anyone posted an "Alrighty Then!" comment, and we're missing the lighter touch of Phranque and old don and, dare I say it, sunshyne? Who was it that used to initiate planning for cyber get together parties and cruises and luaus and such?
Charlotte, I'm sorry you got burned on the Facebook page. I know how you feel because I feel like that happened to me here. I took a long time off to go away and lick my wounds. Lately I have started lurking occasionally but am very careful now about what I post
As others have posted, I have also noticed that new members will initially seem very enthusiastic- maybe post in "where are you from", "please introduce yourself", participate in a few discussions- and then- poof- gone. I think Charlotte even started a topic, perhaps on alternative treatments, for someone who didn't come back. Maybe the new posters got what they wanted?
Gourdchipper* mentioned something lighter. I thought the Lodge that Wolf* started had positive reactions. It was like an open house- but seemed different in an intangible way than the monthly topics here.
When I initially read Jazzy's topic starter I didn't think too much about new members who didn't stick, I thought about members from previous years who have not been present (or present much; I can't claim to follow every post). I know my reasons for not posting more often but I wonder about them. Many were so helpful to me personally and I miss them: JudithKB*, Starling*, LindaMc*, ms. magic, Carolyn*, Julia*, lulliebird, jang*.
Gourdchipper, that was Mimi Party Planner who became Mimi* 11August2013. A couple of times we also wrote a story together where somebody would make up the next sentence. There's been a lot of vitality over the years under the surface.
The actively caregiving membership has been turned over this last year or so as someone pointed out. It's been stunning how many including myself.
I have long felt that there is a wasted opportunity where at the very time that spouses need help for themselves to come away from alzheimers, which doesn't happen overnight, the very network that would at a minimum provide a place our alzheimers spouses belong to now which is valuable in so much flux in it's own right - but would also create a fraternity house that continues the membership nobody wants to join - but is populated by the ongoing struggles to heal from our own alzheimers experiences while grieving and facing an unknown life.
The wasted opportunity is that at the very time that we as individuals could really use the connection to others going through the same thing AND we have a certain level of trust and connection already built - we throw it away and face it alone.
Charlotte is right in her bottom line point. This board exists to help people through alzheimers. But the baby goes out with the bathwater not just on this board but everywhere. That is such a shame. Charlotte and everyone else will end up there. Frank can talk there because his son is part of his afterwards and part of his struggle with alzheimers. Elizabeth can tell us about her New York adventures. People can still get help on bad days. Star people can share vicariously and get ideas.
One thread. Continuous lodge type idea. It's a fraternity house and you're all already members or are going to join. I read the widow thread in it's entirety. It's updates and things that happened and some of what's missing in this FU society. The fraternity thread isn't that. It's continuous and it's the place everybody is fully paid up and welcome. It's like the lodge and it's like a soap opera.
The Afterwards Fraternity House. Something like that. I'll tell you something in all seriousness. That idea is going to help. I see that Abby said hi to Jang. If this had existed when Jang was really here it would have helped her no end. She had a hard time for a long time. She wouldn't have been so alone because of AD.
Look at Elizabeth's attempt to do this recently on the widow thread and look at the need for this in the responses.
This is the first post:
Afterwards is hard. But none of us are alone because we always belong here. The topic on this thread is our lives after dementia.
I come here everyday and have for a lot of years. I don't seem to be able to quit needing this support just because my husband died. I'd like to read that thread even if I didn't post often.