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A lot more people here?
Greg G
Posted: Thursday, August 22, 2019 8:20 PM
Joined: 2/8/2017
Posts: 920


Is it my imagination or does it seem to be many more people here than maybe a year ago?  In a way that is good but also bad at the same time.  More folks dealing with this awful disease. 

Nothing against the new comers, but I kind of miss some of the "old guard/veterans'" voices from when I started reading and eventually joined.

Sooo many new folks asking the same questions that have been asked so many times before.  Do they know they can search the "archives" for previous posts about the questions they have?  Not many of the answers have changed.  We are still fighting the same fight.  

I had to step away from here for a little while because I could not keep up with all the new posting every day.  It was just too overwhelming.  I read and have read probably 9 out of every 10 posts since before I joined.  Using others' experiences (successes and failures) to help craft my own journey down this crappy road.  I truly thank all those who have come before me, shared their experiences and feelings.  Shown me the path and told me that there is light (yet very small) at the end of the tunnel.  

Good luck and best wishes to all, Greg


Gypsea
Posted: Thursday, August 22, 2019 8:34 PM
Joined: 7/29/2019
Posts: 4


Sorry I'm still new to the website and to dementia.  I just did not see the search button.  I'll be more careful in the future

Thanks


SelEtPoivre
Posted: Thursday, August 22, 2019 8:36 PM
Joined: 3/8/2018
Posts: 801


**waves at Greg**
GemsWinner12
Posted: Thursday, August 22, 2019 8:48 PM
Joined: 7/17/2017
Posts: 378


Nevermind. I tried to post a thoughtful, honest response and got the beat-down.
Victoria2020
Posted: Thursday, August 22, 2019 9:35 PM
Joined: 9/21/2017
Posts: 826


I do think a major downside is the out-of-date lousy format of this Forum. Can't get much out of search, even an exact name or phrase - zero results. No date order. I don't make connections so I can search my posts easier.

I've asked how much money  Alz Assoc  would need to get a new set-up; no reply.

This board needs new tech.

I'd lightened up on new people, their first post isn't a "rant" in most cases but maybe the first time they can just put it all out there--hoping for ears and maybe words of comfort from others who should get it-- the loneliness, the loss, the fear, the pain and the lack of understanding from the general public.

Some new people ask a limited question and go their own way.

Others have to get it out.  And good for you, its healthy. We  may not read every word but we get it. We get it.

 

EDIT: I did not refer to new member's very  first posts as a "rant" was quoting someone , but that posting was deleted by poster.

 

 

 

 

 

 


zauberflote
Posted: Thursday, August 22, 2019 10:16 PM
Joined: 10/24/2018
Posts: 402


As a relative new person, I apologize for gate crashing. My disadvantage is that I came here "late" because there was no previous need. I'm sorry I have imposed. I have learned a huge amount here, have felt support and warmth, and am grateful to all whom I've read. Searching for and finding  a 10-yr-old answer to a question about, say, a medication, or hospice, or how facilities behave, would not perhaps be finding the most relevant answer. I will limit my posts. Again, my apologies for being a new pest to be dealt with.
Suziesb
Posted: Thursday, August 22, 2019 11:42 PM
Joined: 5/22/2018
Posts: 209


Zauberflote,  people are always going to be coming in "new" to this board when their LO becomes diagnosed. No need to say you're sorry. It negates what this board is for....support. I just recently realized I could be searching for previous answers on here instead of starting new posts. Oh, well. 

I'm glad you're here, and all of the new, and "old" ones as well. I so appreciate you all.


ruthmendez
Posted: Friday, August 23, 2019 2:19 AM
Joined: 9/8/2017
Posts: 2110


SelEtPoivre wrote:
**waves at Greg**

I know this was meant as a “hello”, but the word “waves” is how I think this board is like. A flock of folks come n’ go in groups and waves....those before us and behind us...on this horrid journey.  I think it’s good to open threads with similar questions because people sometimes  just need to communicate with current members. Old threads give a graveyard feeling...bunch of comments of old members that are no longer active on these forums remind me of gravestones...but I would like to become a gravestone someday 

 

harshedbuzz
Posted: Friday, August 23, 2019 3:57 AM
Joined: 3/6/2017
Posts: 1705


**waves at Greg**

I'm reminded of that cheesy old saying 

Make new friends, but keep the old

One is silver, the other is gold.

I'm happy that newer folks found their way here. (not happy for why they need to be here) Fresh blood is good. Happy to see the regulars still weighing in. Thinking about others who don't stop by anymore. Mel, Misssy and Hawaiigirl come to mind often. 

It is the nature of any support and information forum on which I have ever participated for there to be a certain amount of repetition. It would be great if the search function worked better; it's like 1999 all up in here. But when someone resurrects a ghost thread because they need clarification, things go sideways.  


zauberflote
Posted: Friday, August 23, 2019 6:20 AM
Joined: 10/24/2018
Posts: 402


Thank you, Suzie, Ruth, HB. I agree with your sentiments. The other two fora which I participate on are of both types, "waves"-- joint replacement, and "constant growth"-- diabetes. Naturally neither of those has quite the mood of this one. I do like this one for the wealth of wisdom shared by caring members,  but Victoria and HB are so very right-- this platform is antiquated! I would pay to be a member....
Livesbythebeach
Posted: Friday, August 23, 2019 6:40 AM
Joined: 4/3/2019
Posts: 224


I'm one of the "newbies" here, and all of you have helped me more than you know.

I realized my mom was probably suffering from dementia last winter after a trying episode of what should have been something really simple.  Won't bore you all with the details. 

So I spent a day that weekend researching all her symptoms, etc, online but felt like I was going to lose it- I was sitting here with my dog, sobbing and wondering how the heck I was going to deal.  I have limited therapy and support group options due to my health insurance, and where I live is pretty far from anything (except the beach, lol!). I'm single, my brother is a jerk, and my parents live 1,000 miles away- and we have no family in this country.  I already have a LOT on my plate with a (newish) and demanding job, dog, house I look after myself, plus two extra side consulting gigs.  

So when I found this site, it was a lifesaver.  People's support and advice has helped SO much- got me through a stressful visit from my parents, helped me see that it is perfectly ok to feel upset and lost about having to do it alone, and even made me laugh more than once. (Harshedbuzz especially, love your phrase "special kind of suckitude").  I've learned a lot, and I don't feel so alone thanks to all of you. In particular, the most valuable learning has been around dealing with this horrible disease within a dysfunctional family structure.  If it wasn't for the support of people here, I'd still be trying to be honest with Mom all the time (as I am with everyone else in my life) . . . I've actually learned how to enforce boundaries and use fiblets, and while this all still stinks and I know it's going to get worse, at least I can deal. 

I agree about the site needing a tech upgrade . . . . I wish there was a way to tell when people have jumped on old posts.  However, we are darn lucky to have this space. 


Doityourselfer
Posted: Friday, August 23, 2019 6:41 AM
Joined: 9/5/2017
Posts: 352


I've found a lot of useful information by searching older posts.  This is my 'go to' website right now and has been for the last two years.
romiha
Posted: Friday, August 23, 2019 7:23 AM
Joined: 12/21/2014
Posts: 565


Victoria2020 wrote:

I do think a major downside is the out-of-date lousy format of this Forum. Can't get much out of search, even an exact name or phrase - zero results. No date order. I don't make connections so I can search my posts easier.

I've asked how much money  Alz Assoc  would need to get a new set-up; no reply.

This board needs new tech.

I'd lightened up on new people, their first post isn't a "rant" in most cases but maybe the first time they can just put it all out there--hoping for ears and maybe words of comfort from others who should get it-- the loneliness, the loss, the fear, the pain and the lack of understanding from the general public.

Some new people ask a limited question and go their own way.

Others have to get it out.  And good for you, its healthy. We  may not read every word but we get it. We get it.

 

EDIT: I did not refer to new member's very  first posts as a "rant" was quoting someone , but that posting was deleted by poster.


~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
What Victoria said. 

The format for this community is downright horrible.  I just used the "quote" feature to reply here and I think my reply may show up inside the quote.  (edited: YUP, it sure did.  I added some ~*s to hopefully help "offset" that.) 

We were all "Newbies" at one time, too.  I was in serious overwhelm when I first came here on this journey.  I was welcomed and it was so helpful to learn I was not alone!

A couple weeks ago, I attended an 'in real life' Alz Org support group - there were probably 2 dozen people in attendance - some "old timers", many "newbies" and I was shocked to discover NO ONE THERE knew about this community!   

Anyhoo, my journey continues ... my mom with Alz passed away about a month ago but now I am caring for my dad who "only" has "mild cognitive impairment."  Caring for him has been a LOT more frustrating, to be quite honest!

I welcome the "newbies" and hope they know they are welcome here - and those of us who can reply will continue doing so - but other caregivers may not be able to and that's perfectly okay, too. 

Hugs to ALL on this horrid journey!!

PS:  Searching for topics is a nightmare and does exlain the resurrected old posts! 

 

 

 

 

 



BarbaraG
Posted: Friday, August 23, 2019 7:56 AM
Joined: 3/24/2019
Posts: 9


I'm new here so I cannot say if there are more people here but it would not surprise me. It does seem like more people are getting alzheimer's these days.  I don't remember reading in history books about so many people losing their minds in their old age.  Maybe because people didn't live as long back then.  Now we have additives in our food and water and we have a pill for everything so people are living longer and ending with these diseases.  It sucks to watch my mother in law return to being a child.  And she doesn't even know it's happening or if she does, she won't admit it.  She says there is nothing wrong with her, everything is fine, and she's getting better.  She says that all the time. Very sad.

Nice to meet you all and to know that we're not alone in dealing with this disease.

Barbara


Janice.alone
Posted: Friday, August 23, 2019 8:06 AM
Joined: 10/12/2018
Posts: 62


Greg,   aren't you being a bit hard on the newcomers?     You would consider me a newcomer since I joined less than a year ago.   At the time I joined, I was so overwhelmed by my situation and finding this forum was a Godsend.   Having such helpful and caring people to answer my questions relieved much stress and I didn't feel alone in my gloomy situation.    Now I feel like a naughty girl for bothering people by asking redundant questions.    Since my mom has passed away, I won't be bothering you again.
Gypsea
Posted: Friday, August 23, 2019 8:43 AM
Joined: 7/29/2019
Posts: 4


I believe it was me that deleted the post last night. I felt truly bad about putting it up when I should have researched it.  I know about the search button now and hopefully it will help me.

I just wanted to be a part of a community that is going thru what I'm just recently started going thru.  It was and is very sad and very overwhelming to see my mother go thru this.

I may not be posting anymore but I'll be sure and use the search button the best I can. 

I'm sorry Greg felt he had to put up this post... I'm sorry.  I'm just trying to help my mother the best way I can.  I think it is safer to just read what everyone is posting.

Thank you so much.


Greg G
Posted: Friday, August 23, 2019 8:56 AM
Joined: 2/8/2017
Posts: 920


To All,

After reading some of the replies to my post, I have to apologize to many of you that have posted and felt attacked and to those that chose not to reply.  My intent was/is NEVER to criticize ANY of you about asking questions.   I was frustrated because there seems to so many postings every day that it is hard to keep up.  Some very similar within a couple days of each other.  And I guess I was a little burned out...again.  For those that do not know my situation, I am in year 7 or 8 (hard to know exactly when I started) and on my second and remaining parent with dementia.  No, I have not seen it all by any stretch of the imagination but I can relate to 85-90% of what you all are experiencing or have experineced.

I have never used the apparently almost useless "search" option here.  So another apology from me.  Over the years, I have spent many days (maybe months now) worth of time reading about others' problems and others' suggestions.  My wife was jealous of the time I spent here trying to learn all that I could to figure out what needed to be done to help my dad (1st one with dementia) and mom as not so obliging caregiver.  Then I had one in late stages and one in early stages living in their home by themselves.  I was a stay at home dad with 2 kids and a wife that worked 60-70 hours a week with some overnights.  This forum was my classroom.

I guess I kind of forgot what it is like to be new at this.  Overwhelming, frightening, sleep depriving, anxious and all the other things.  I will work at remembering my kindness.

Again, good luck and best wishes to you all, Greg


Rockym
Posted: Friday, August 23, 2019 10:49 AM
Joined: 1/17/2016
Posts: 892


Hi Greg,

I still come to this forum to read and perhaps help if I can.  There are many of us who aren't here as much (or are not posting) as our LO have passed.  I keep looking for a few old friends and then I figure they must have moved on with their lives.  There are many new people and I feel for them.  I guess it reminds many of us what we had to go through and therefore, many just don't come back.

The strange thing is that now, at least for me, it's been a little over a year since mom's been gone and so many of the tough times in my mind have shifted to how we overcame.  The other thing I notice is how my mind continues to focus on the positive, lovely things that happened over those years and the good times we shared.

I still believe a lot of how we handle this experience is what can make or break us.  I know that I shifted my strong personality very quickly with mom and only used it with the doctors, community managers, etc.  Mom got the softer side of me that fewer people used to see.  So much of how we deal with adversity in our lives is our attitude.  Of course a shot of whiskey doesn't hurt either.  If you ever feel like talking to someone from the older crew, send me a connection.  I'm a pretty good listener, but do tend to interject advise often.


MinutebyMinute
Posted: Friday, August 23, 2019 12:49 PM
Joined: 6/11/2019
Posts: 241


Thanks, Greg, for clarifying. As one of those newbies, I'm sure I've violated the repetition rule more than once. In fairness though, the site's search engine DOES seriously suck. 

You sound in other posts and replies like a genuinely nice person so I was a little taken aback by your post here. That's one of the flaws of online communications: a lot gets lost in translation sometimes!

I'm probably only half  to two-thirds as far as you are in the journey so I know I'll be asking more questions and sharing more situations both to vent and look for answers. This site has helped me a lot to not feel so stupid and alone. I wouldn't want to ruin that for myself or for anyone else.

 


dutiful deb
Posted: Friday, August 23, 2019 12:55 PM
Joined: 1/1/2012
Posts: 1847


I am one of those long-time members who rarely posts. After reading this thread, I wanted to share a couple of reasons I am no longer very active. 

First, I can spend several minutes typing out a well-thought out, carefully worded post or reply. In editing, I seem to always lose the whole thing, and then don't have time to re-write anything. I find, then, that I either skip posting or I post something that I feel is not worded very well, leading to inadequately expressing  my feelings or experiences.  

Second, I would love to see some different formatting, but I just don't have any good suggestions. At this point, I've been in a number of caregiving roles. Years ago I was the secondary support system for my mother while she was the primary care person for my grandparents. Both my grandmothers had dementia, and I learned then many skills I used when I became Mom's caregiver. Mom has been gone for little over a year, but now I'm  dealing with my husband's impairments. This has not been a sudden hit, but a gradual decline that waxes and wanes. Because he is totally oriented and functional, it's been difficult to find help from the medical field.  It's hard for me to say, "My husband is totally oriented to time and location, he still works, we still travel," while at the same time saying, "My husband cannot make a decision to save his life." This sounds so contradictory, even to me, but it's my twisted reality.  

I know there are many options here, and we can post anywhere we want, but I feel like it would be so helpful if there were sections specifically geared for those going through early, middle, and late stages. Each of those has its own specific issues, and I would love to be able to connect with people who are also living with loved ones that have early stage impairment. I so appreciate the private connections who listen, share, and help in my journey! 

 

 

 


GothicGremlin
Posted: Friday, August 23, 2019 1:27 PM
Joined: 4/7/2019
Posts: 44


Speaking as a fairly new person, I'm really happy I found this site.  I'm not sure where they found this forum software, it's so bad, but I've looked past it (and learned to copy all of my posts before I post them after losing a few) because there is such a wealth of knowledge here.  I'll confess, I didn't notice the 'archives' button when I first joined, but it's also got its issues.

Prior to my sister's diagnosis I knew nothing about Alzheimer's, absolutely nothing. Since then I've read everything I can get my hands on, and read a good number of the posts in this forum. I know so much more now, but with every behavior change, every new stage, there's more I realize I don't know.  It's often overwhelming.

I hope I'm not being too annoying with my questions, I certainly don't mean to be. I try to make up for it by contributing where I can.

And thank you Greg for your follow up post. 


SelEtPoivre
Posted: Friday, August 23, 2019 2:00 PM
Joined: 3/8/2018
Posts: 801


 I’ve written to the mods asking for a “sticky post” that would contain a “Read This First” essential information’ info for new members (importance of will, adance directives, POA, CELA, HCP; video/print resources including 36 Hr Day, Teepa Snow & Naomi Feil; Medicare and Medicaid websites and phone numbers, stages, Stephanie Z’s info thread etc), items that cover the most common issues a new member would have. There’s no central place on this website for informational basics. I’ve recieved no response other than “we’ll consider it for future updates”. My offer to help compile the list has gone unanswerd.

I’ve also asked that the search function be improved, and being able to see your own past posts. 

New members - often in panic mode - need to have easy access to basic guidance from the Alz board, without having to rely on the kindness of strangers to repeatedly take the time and effort to type out information that should be readily available from the site.



MissHer
Posted: Friday, August 23, 2019 3:15 PM
Joined: 11/13/2014
Posts: 2132


Greg is a super nice guy and I doubt he would insult anyone purposely. Plus. he is funny!
D in law
Posted: Friday, August 23, 2019 3:47 PM
Joined: 4/24/2017
Posts: 573


Hi Greg!!!   

Support board means folks are usually in a crisis mode and some/maybe most start typing because they are desperate for help. No time to read instructions first (LOL)!  I also think what is written in the posts strikes a heartstring and that gets them to join and share or reach out.

I don't like this set up either.  

I do still stop by to read some and if I feel I can help someone I try...…..

I do wonder how some of the posters who aren't active now are doing.   But, it's the internet.  It happens!


Janice.alone
Posted: Friday, August 23, 2019 3:58 PM
Joined: 10/12/2018
Posts: 62


SelEtPoivre wrote:

  I’ve also asked that the search function be improved, and being able to see your own past posts. 

Perhaps this is what you are looking for and I just found it today.    After you sign in to the forum, there is a link on the top left "YOU" .   If you click on "YOU"  that will take you to a listing of everything you have either posted or replied-to on the forum.  Not sure if that's what you're looking for.  I'm not very computer literate. 

 


ruthmendez
Posted: Friday, August 23, 2019 4:05 PM
Joined: 9/8/2017
Posts: 2110


Remember beaverdams? The profile name is what got my attention. He kinda seemed ready to get the heck outa here during the time I joined. I guess he didn’t like the new wave of folks coming in. He just like...disappeared one day...
Marta
Posted: Friday, August 23, 2019 4:10 PM
Joined: 6/3/2013
Posts: 711


We can’t infer why Beaverdams is not posting.
SelEtPoivre
Posted: Friday, August 23, 2019 5:08 PM
Joined: 3/8/2018
Posts: 801


Thanks janice for trying, unfortunately it only takes you to the thread, not the specific post, and it has everything people you’ve connected with has posted. It’s a big problem

Janice.alone wrote:
SelEtPoivre wrote:

  I’ve also asked that the search function be improved, and being able to see your own past posts. 

Perhaps this is what you are looking for and I just found it today.    After you sign in to the forum, there is a link on the top left "YOU" .   If you click on "YOU"  that will take you to a listing of everything you have either posted or replied-to on the forum.  Not sure if that's what you're looking for.  I'm not very computer literate. 

 



luv482
Posted: Friday, August 23, 2019 5:28 PM
Joined: 2/26/2015
Posts: 23


I don't feel you need to apologize.  You have come to a community to vent, ask questions, or whatever else you need to do.  I probably have asked the same questions as well and sometimes searching is not easy.  I hope you don't get discouraged and continue to ask away.  We are all in this disease together and if this is where we come for support, comfort, etc then let it be.

God bless you!


Victoria2020
Posted: Friday, August 23, 2019 5:50 PM
Joined: 9/21/2017
Posts: 826


Yes -I forgot to moan about the posting belch, you craft a reply, trying to be upbeat and not say :

 you know that eskimos have a bunch of words of snow-   well you'll get to learn even more ways to say "memory failure" and "accident" in your new journey , hit post and all this useless gibberish pops up-- FAILURE. Your post is gone.

I don't use other Forums like this - where the same people come often, old posts very worth reading----does anyone use a better functioning Forum that doesn't have the issues we have?

I want to suggest that brand to Alz headquarters but since I don't use any have no ideas. Let me know the site or brand, if on bottom of page:  "powered by gerbils inc"  Thanks!

 


MPSunshine
Posted: Friday, August 23, 2019 6:43 PM
Joined: 5/21/2016
Posts: 1953


Hey, Greg, we go back to the mold = brother and when my dad and mom were alive. Me, I read here often, tried at one point to delete most of what I wrote, then finally just gave up and accepted the fact that my buddies here, all victors of trial by fire, the job we never knew we would have, for which we did not interview and which we will need three degrees of freedom to progress, were some of my best friends. Let’s be easy on the new folk. Remember how nice Zolly was to post the seven stages? They were easy on us. It’s a tough row to hoe. Waving and a high five to you, Greg.

Edited to add: my mom, who went to the better place over a year ago, just got a letter to go to jury duty. Now what should I do with that? Only this group has the answer.


Marta
Posted: Friday, August 23, 2019 7:24 PM
Joined: 6/3/2013
Posts: 711


Victoria 2020:  am not “getting “ your last post, but am interested in your thoughts.
Victoria2020
Posted: Friday, August 23, 2019 7:27 PM
Joined: 9/21/2017
Posts: 826


Hi Marta - sorry -- is there a better performing website for Forums like this that someone has used?
Marta
Posted: Friday, August 23, 2019 7:34 PM
Joined: 6/3/2013
Posts: 711


Hi V. Just meant I did not understand your last post, but have always valued your input.
Victoria2020
Posted: Friday, August 23, 2019 8:48 PM
Joined: 9/21/2017
Posts: 826


no worries- text is tough-hard to tell inflection  

I'm too hypochondriac to try sampling other disease Forums myself ; I'd be at my doctor's complaining -I do too have [ insert name] and [ this] AND [this]! so hoped someone  here uses another board that works better.