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Joan's friends recalibrating
rodstar43
Posted: Saturday, February 3, 2018 8:59 AM
Joined: 8/29/2016
Posts: 51


We need a place to find each other so we can continue helping one another.

add you name to the list with new aka if u had to get one.

old name.                new name

rodstar43


bhv
Posted: Saturday, February 3, 2018 9:42 AM
Joined: 2/3/2018
Posts: 101


Hi Rodstar43. I am bhv and just joined here with same name.

I see there are a bunch of posts on your thread but I can't see them. I will try adding some connections I guess.   I need to switch to my laptop to find a picture.  you look just like I imagined.


bhv
Posted: Saturday, February 3, 2018 9:48 AM
Joined: 2/3/2018
Posts: 101


Oh, now I see there are a number of views, but not posts. Not sure if I need to make connections. Will see how things go without formal.connections first.
Nicky9
Posted: Saturday, February 3, 2018 7:37 PM
Joined: 1/28/2018
Posts: 24


rodstar43, this is Nicky from Joan's friends.  Here I'm Nicky9.


rodstar43
Posted: Saturday, February 3, 2018 9:38 PM
Joined: 8/29/2016
Posts: 51


Hi Niky9, I sure don't have a good handle on this site yet.  saw bhv checked in. Not sure of this connection thing. All I know is I do not want to loose the source of friends from Joan's web site.  When you are alone 24/7-365 it is important to learn from others. Thanks for checking in. Being prepared.
rodstar43
Posted: Saturday, February 3, 2018 9:45 PM
Joined: 8/29/2016
Posts: 51


bhv, For some reason I could never get a pic to work on the other site.

pic is old, 2005' i need to transfer some pics from "dumb" phone. show DW and me Recent.  guess i could also transfer to computer too. much to do so little personal time.


rvgrandma8
Posted: Sunday, February 4, 2018 2:27 PM
Joined: 7/10/2017
Posts: 128


Hi all. This is Charlotte. Just checking out the site this morning. Have not figured out the connection or group. I wish there was information in the 'help' section that explains how it works.
Blackfoot Daisy
Posted: Sunday, February 4, 2018 8:40 PM
Joined: 1/5/2018
Posts: 59


Hi Rodstar. I am Blackfoot Daisy and I am a newbie, trying to learn everything. I think you were on the Spouse/Parnter chat group last evening. It is my DH who has the Alz. I cannot figure out how to read the older posts in a discussion - the board will say there are many posts but I can't go beyond one page. 

And I do not understand how the Connections work.


bhv
Posted: Monday, February 5, 2018 12:17 AM
Joined: 2/3/2018
Posts: 101


I've been exploring here as a newbie.  It sounds like you can invite people to be a connection to you.  If you establish a connection you can private message (they will appear in your inbox here) and establish private groups and share more information from your profile with just your connections.  Like Facebook friends I guess.  Not sure I will do any of that.

 

I also saw that you can subscribe to a thread by clicking on a little envelope at the top of the thread next to the print button.  If you do that you will get email notices when people reply to you or add to that thread.  So it seems to make a difference if you reply to a specific post or go to the top and add a post. You can also change that option or unsubscribe by clicking on that envelope again.  I am trying it out by subscribing to this thread.

I also noticed that some things are different if you are signed in.  Like the forum screen showed be how many replies as well as how many views since I am signed in. And today I was on a thread that had numerous pages and when I got to the bottom of the page I could click on LAST to get to the more current conversation.  There were several more options.

I put my picture up, but I think I might change it to a generic pic in a day or so.  Not sure how to handle that.

Also just found that you can edit a post.  Works well.


bhv
Posted: Monday, February 5, 2018 12:29 AM
Joined: 2/3/2018
Posts: 101


Hi Charlotte.  Happy to see your smiling face!

If you click on Help there is a little bit about connections over on the left side of the page under the ALZConnected heading.  Not much, but a little.  Subscribing to a thread might be more helpful.  I don't know.


bhv
Posted: Monday, February 5, 2018 12:34 AM
Joined: 2/3/2018
Posts: 101


Hi Blackfoot Daisy,  I am learning here too.  I found things look different if you are signed in or not.  For me, when I click on a topic it starts at the beginning.  I just noticed that if there are a bunch of posts it has something at the top and bottom of the page allowing you to pick a page number or go to the FIRST or LAST page.  That is very helpful.
rodstar43
Posted: Monday, February 5, 2018 1:49 AM
Joined: 8/29/2016
Posts: 51


Hi Daisy, are you really a blackfoot.  I remember the chat. I am new at. this too. views does nnot guantee posts --i think Connectionnectin thing ???????

some others were together on another site that is gettint shaky.

i am from NM. DW of 55 yrs has has AD 9 yrs

Richard


bhv
Posted: Monday, February 5, 2018 10:55 AM
Joined: 2/3/2018
Posts: 101


I forgot to sign in at first. When I did sign in then when I am inside a thread my posts have buttons to edit or delete them. And at the top of the thread there is the envelope button to subscribe next to the print button. When I wasn't signed in, the envelope wasn't there.

Aha moment. Last night I.was using my laptop and could see number of replies in addition to number of views. This morning on my tablet I didn't have number of replies. Turned the tablet to landscape and poof ... number of replies is visible.  (On the Spouse..Forum page.)


rvgrandma8
Posted: Monday, February 5, 2018 4:46 PM
Joined: 7/10/2017
Posts: 128


b - nice to see what you look like. 

I sent connection invites to Rod, bhv, and Nicky. Will see how it works. 

Did you see the post from Joan today. Kind of hard to read between the lines but I have a gut feeling she will be leaving the site. Not sure if someone will take over. She said she will be posting more in a few days but in the past her 'few days' never materialized. Hope they do now. 

Last night I was on the bed playing with the cat when my husband came in and ask: will that (couldn't remember cat) be staying with us? He is really going downhill the last few months. 


bhv
Posted: Monday, February 5, 2018 5:03 PM
Joined: 2/3/2018
Posts: 101


Hi Blackfoot Daisy,

I just noticed that when I click on "you" on the menu across the top there are some recent posts if I scroll down.  Under the tab My Network it showed my recent posts and that I just connected with Charlotte.  There was also a Message Board tab that showed recent Activity in all of the forums.  This one only one page.  On the bottom of that you can click Browse Message Board to see all the earlier stuff.  Or just click on "message boards" along the top of any page.

Hope that helps.


bhv
Posted: Monday, February 5, 2018 5:14 PM
Joined: 2/3/2018
Posts: 101


Hi Charlotte,

I just saw Joan's message.  Will wait and see.  Need to tell my friend about the sciatic nerve procedure.  She might need to check into that sometime soon.

Yes it is nice to see what you look like.  I accepted your connection invite and when I did your latest post appeared just under there.  

You wrote a few days ago about the difficulties in the gorcery stores.  My hb started that I think last Nov or Dec. Now grocery shopping is much more difficult.  It is interesting your hb still can find some words.  Mine mostly is jibberish

This morning he seemed bored and once again I asked if he wanted to take a walk.  I was ASTONISHED when he said he would come with me.  Seems to me he has been refusing to do that for about two years now. He does walk slow, but not as slow as when we are shopping.  He generally stays behind me, but this morning not as far behind.  (There was a discussion on this forum about the slow walking and staying behind.)  Surprisingly he kept warning me about cars.  Wanted me to get farther off the road than I wanted to do.  At one point he said "I am going on this side." and crossed the road.  I was flabbergasted.  That is the first intelligible sentence he has uttered in perhaps a year.  I am going to try this tomorrow too.

Oh yeah ... I got him into Depends.  Could not believe it.  They didn't contain the mess the first time, but things have been better for a few days.  And he continues to be OK with them.  I just say here is your underwear and this is the front.  I think my hb is perhaps more advanced than yours. He needs help dressing and we can only do one half step at a time.


bhv
Posted: Monday, February 5, 2018 5:22 PM
Joined: 2/3/2018
Posts: 101


I just got connected to Charlotte.  Now if I click on "connections" across the top it shows me Charlotte's picture.  If I click on that I can see her profile and info she wanted to share about her hb.  There is an Activity tab and when I clicked that it listed her recent posts.

If you want to share a bit more info about yourself or spouse click on "edit profile" at the top and look for Privacy.  There are some things to can reveal just to connections if you like.

Also, when I click on "you" along the top menu it now shows my recent posts as well as Charlotte's. 


extex
Posted: Monday, February 5, 2018 7:19 PM
Joined: 8/23/2014
Posts: 529


Welcome to all of you who have recently joined this forum.  You will find a wealth of information here and some really knowledgeably, friendly folks. Many of whom have already been all the way through the wringer and can advise you from A to Z.  There are also medical and legal professionals who may be able to help you with a particular problem.   Chat rooms are also available for real time communications.  Folks labeled as “Peer Volunteer”  may be able to assist you in navigating the alzconnected system or put you in contact with someone who can.  We are glad you found us.
Nicky9
Posted: Monday, February 5, 2018 9:26 PM
Joined: 1/28/2018
Posts: 24


I have connected with Charlotte,  but not sure where to go from here.  I'm having difficulty navigating this site right now, because I'm using my iPad.  I'm more comfortable using my computer, but I'm out of town & out of province right now babysitting my grandsons, so I need to use my iPad. Maybe I'll be just as lost on my computer??  Going back home next week.
rodstar43
Posted: Tuesday, February 6, 2018 12:02 AM
Joined: 8/29/2016
Posts: 51


Hello Nicky,  bhv, Charlotte,

it sure looks like y'all are starting to get a handle on this web site.  I read Joans message too. It sure sounded like the plug is going to be pulled. Who is Matt? For Y'all that have been with her site a long time it has to be hard. , I know even since October, (month. I found out about DW cancer) in adition to AD, you all have been a great help to me. Thanks.  Lets talks others over while there is time left.  If she keeps the web site up no harm especially if some thing are fixed.

Rodstar43


rodstar43
Posted: Tuesday, February 6, 2018 1:26 AM
Joined: 8/29/2016
Posts: 51


bhv, would send me an email. would like to ask u some A F stuff.

my address is on other site. first it will block and will ask you f2f or permission. i wiil look for it on computerr on suspect file then addd u to my address book one time that is it

Charlotte'email came thru ok

i. am the 23.5 AF ret vet in Hobbs, NM

retired out of Mather AFB 1984


Jo C.
Posted: Tuesday, February 6, 2018 10:30 AM
Joined: 12/9/2011
Posts: 8879


Hello everyone and welcome to this marvelous place of support and information.  At first I was awfully confused as to what was happening with this Thread, then after a second look, it appears that you are all coming from another site.    We are so glad you have found us, it is a very soft place to land.

For those who are not familiar with this Message Board or who have little experience in such a setting, I have included some broad information.

We are all here in mutual support of one another and that now includes you too!   There is much emotional support, information, and experiential wisdom to be found from the Members in open discussion.

The very best way to get acquainted here and to get the very best support or to provide support is to simply come to the different Forums wherever you wish and write a Post or create a new Thread for a topic you wish to present.  It takes just a bit of time to get oriented to how this all works and also to adapt to the culture which can be different from one Board to the next.

If you are having technical or processing problems, you can go to the top of the page where you will see, "Contact Us," or "Help."

"Groups" is where one can go to start a locked Group for a particular interest.  One can only get there by acceptance of the individual starting the Group.  Everything there is hidden.

"Connections" is also where one can invite or accept an invitation to "connect" privately with another off the Forums.  Usually that is done if there may be something to discuss that would not be comfortable on the open Board as it is more private.  Sometimes it is simply for a personal friendship that has formed.

My suggestion would be to stay on the open Forums for awhile while you acclimate.  By the way, anyone can Post or start a Thread on any Forum one wishes; there are no restrictions to that.

This Message Board is not intended to have an exclusive "private club" sort of dynamic by only meeting on the Group or Connections functions; if we do not share openly with experience and knowledge on the Forums, then we do not benefit and help others.

It is also important to read the "Guidelines" that is at the top of the page when you go onto any Forum, and also to read the, "Terms and Conditions" found at the bottom of the Forum pages.  This outlines policies that we agree to when we join the Board.

Here, we mostly Post on the Forums so that everyone can benefit from the information sharing.  There are literally thousands of people over time who come here to read to obtain help and support.   Some are actual Members, others stay in the background and read but do not choose to join as yet.

It is also good to know that the Alzheimer's Assn. has a 24 hour Helpline that can be reached at (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are good listeners, wonderful support, have much information and often resources, and they can assist us as we go through problem solving. 

Also, check out the Navigator and Local Resources at the bottom of the page, and also if you go to the top of the page and click on, "Solutions," there are some helpful topics there that address an assortment of issues one can encounter with a Loved One who has dementia.

This is a place where one can be totally understood as we are all walking similar journeys.  So; once again, welcome, we are looking forward to getting to know you.

 J.


bhv
Posted: Tuesday, February 6, 2018 10:59 AM
Joined: 2/3/2018
Posts: 101


Thank you for the warm welcome JoC and extex. Also thanks for the info JoC.

You are right. We are a group from another spouse website who have become very close friends over many years for some of us. This thread is our way to reconnect because some had to change user names and some were already here under different user names. So we want to be able to recognize our friends.

I have been exploring the other threads and find a wonderfully supportive group here. Am happy to have the search function to find info as I get to the stages others have gone before. I know this kind of support is vital forme at least. It is too lonely to attempt this caregiver journey alone.

I am sure we will be adding to the open discussions as we get acclimated here.


bhv
Posted: Tuesday, February 6, 2018 11:02 AM
Joined: 2/3/2018
Posts: 101


Nicky9

Make sure you are signed in. Turn your I Pad to Landscape  at least for the Spouse....Caregiver Forum.  Check out help.


rvgrandma8
Posted: Tuesday, February 6, 2018 11:30 AM
Joined: 7/10/2017
Posts: 128


Rod - Matt is her computer guy. 

Did you ever figure out how to do the group thing? 


Jo C.
Posted: Tuesday, February 6, 2018 12:56 PM
Joined: 12/9/2011
Posts: 8879


Well, I think I found the site with "Joan" that you were on.  I was not able to pull up current Blog dates and only found into 2016.  I will say, that the site had some good, where the rubber hits the road, information for Caregivers. 

I am curious about what happened or is happening to the site?

I can sure understand not wanting to lose your communications with one another; those relationships are golden.

It would be nice to learn about you and what your background and Caregiving situation is with your Loved Ones.

We here keep coming together even after our Loved One (LO) dies.   It is an extended e-family for most of us and we continue to be part of it for as long as we wish even after the final loss.  In fact, those who are in that category really have so much experiential knowledge and wisdom, they have a lot to offer to others who are newbies or earlier on the unwanted journey.

Myself?  I am not a Spouse of someone with dementia.  I am an RN, was supervising RN on medical and surgical units for earlier career and then got my Master's Degrees and went on to spend years as Administrator of Patient Case Management in various acute medical centers.   Had oversight for Social Services, Disharge Planning, Case Management, Utilization Management and more. 

I also had a consulting business where I audited Hospice and Home Health entities and other healthcare areas that provide hands-on care.

My dementia experience is coordinating care for a MIL and GMIL who both had Alzheimer's and then being the primary Caregiver for a mother with FrontoTemporal Dementia and a step-dad with Alzheimer's Disease.  Both Mom and step-dad (her husband ) were diagnosed and had both dementias going at the same time.   I feel significant concern as my husband is aging, and his family is rife with Alzheimer's Disease.  He has no interest in being checked for genetics, so the family history and having Diabetes makes him at much higher risk.

The one thing I feel sure of, is that it is a whole different ballgame and much tougher when the LO with dementia is a beloved spouse.   Until someone has been in that position, or cared for a spousal couple with a LO with that dynamic within their relationship or has spent a monumental amount of time here with the Spouses, they have no idea.   It goes farther than the hands-on physical care bits and pieces, that is for sure.

By the way, someone mentioned the "Search" function.  Well; it is not always as helpful as could be and things are not chronological, so don't be too surprised if you cannot get what you are looking for; it is not anything you are doing, it is the vagaries of that particular function.

Anyway, I have seen your Profiles and am looking forward to learning more about each of you; your background and about your LOs situation.  And where DOES rvgram wander to anyway?  That sounds like there may be some adventures to me!

Warmest of thoughts are being sent your way,

J.


rvgrandma8
Posted: Tuesday, February 6, 2018 10:01 PM
Joined: 7/10/2017
Posts: 128


Rod, bvh, Nicky - I started the group and you are all added to it. If you click on groups it should show up. I know Rod you started one but I don't think you added any of us since it never showed up.
Victoria2020
Posted: Wednesday, February 7, 2018 6:42 AM
Joined: 9/21/2017
Posts: 151


I'm confused-- is this topic a "group"?
rodstar43
Posted: Thursday, February 8, 2018 3:07 AM
Joined: 8/29/2016
Posts: 51


how dow we find your group, all i see iz my lame attempt

rod


rodstar43
Posted: Thursday, February 8, 2018 3:17 AM
Joined: 8/29/2016
Posts: 51


guess it is time to sneak on rhe desk top computer, saw on dumb phome som emailactivity, have. not been able to see su s pect files on "dumb" phone.
bhv
Posted: Thursday, February 8, 2018 9:11 AM
Joined: 2/3/2018
Posts: 101


rodstar43, click on groups on the menu across the top of the page. Click on invites and you should see Charlotte's invite. Accept that. It is a private group. You have to accept the invite. Nicky9 and I are there.

Once you have accepted the invite, when you click on groups you should see it under your groups. Click on the group name and you can see a few posts.It works a.bit differently. I replied to Charlottes post and it is a bit more difficult to see the reply. So I will add a.post rather than reply in future.

I am not sure how often we will use the group because this forum is full of people in the same stage we are. We should be able to fit in here just fine.

oh yeah, I sent you an email and it seemed to go through your filter. (On my tablet I had to copy and paste the link in order to make it work.)

 


bhv
Posted: Thursday, February 8, 2018 9:16 AM
Joined: 2/3/2018
Posts: 101


Sorry for the confusion this thread is causing for some. We are a small.group of folks who were finding support on another website. The moderator there has had health problems and some Chinese spammers were filling the message boards with stupid stuff. Rodstar started this because some had to change names over here and we want to know who is who. We are helping each other get acclimated. We appreciate your patience.

I think this current group is full of folks who are in similar stages as we are and, as we post here, we will get to know each other. Thank you for the warm welcome.


Gig Harbor
Posted: Thursday, February 8, 2018 9:45 AM
Joined: 3/10/2016
Posts: 419


Welcome to this board. You will find many who share the same stages of your journey. How do you find Facebook groups that are closed but accepting members?
Amber9
Posted: Friday, February 9, 2018 4:12 PM
Joined: 2/9/2018
Posts: 2


Found it!  Thanks for setting it up!
Amber9
Posted: Friday, February 9, 2018 4:27 PM
Joined: 2/9/2018
Posts: 2


Found it!  Thanks for setting it up!
 
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