Private Alzheimer's Chat

[Jo6]

I've been thinking about this for quiet awhile. It's good to have others to talk to especially when we are down.

What do you guys think? There are other times we just need to vent. There are other times we shed a few tears.

If we post at least 10 names here saying you would like to have the room I think it would be good in a lot of ways.

I'll stop nagging if you don't want it, but it sure can be helpful. You can put your thoughts and feelings in this thread or to CM1. Take care all, Julia

[karenrn]

Hi,

I'm new here, my MIL was recently placed in assisted living. She struggles with orientation in time and space and frequently calls my husband and myself "to come get her out of this hotel", these calls may be at 5 am or midnight.

My FIL died recently and so she is dealing with grief as well, when she remembers that he is dead. It breaks my heart. The other day I took her out for an outing and though she may want to go to the cemetery, I had to break the "news" to her that her husband was dead. Other time she says she misses him.

One of the most frustrating things to me though is how most of my husband's siblings seem to view this placement as an end to any of their responsibility.

I'd be interested in a chat room.

[Jo6]

I'm sorry you have to be here but am glad you stopped zand cast your vote!:) I do feel for you and of course your husband and MIL.

You are so right about the siblings!! My MIL in in a lock down NH. It's been a long and sad journey. My hubby is oldest, is POA and all the others just resent him. I do believe that is quiet common, but it does not make it any easier.
You never know what and when they will remember something and it can be painful. It sounds like you have a pretty good grip on the way of the in-laws, but sometimes the bio kids also.

I hope we can get enough to have this room. Those that haven't dealt with Alzheimer's can't seem to grasp the full picture. One of the Chat Mods would set this room up and show us the way, but I have a feeling many have needed this and just didn't ask.

I will be back around as soon as possible. My MIL fell and broke her hip, then had a stroke, it never seems to stop. I love my MIL with all my heart, but it has been hard going.

Tootsie is a member here and she is a good one to talk to. I've got to run but will check back in with you. If you know anybody else that may be interested how bout telling them about us.

take care, Julia

[karenrn]

Thanks for your response, it's good to connect. Hope you get 10 people!

[Jo6]

Yes, it is very good to connect and as time goes on it becomes more important.

How is your MIL doing with Assited Living? I hope things will settle down for her. It would be very good for you as well as hubby.

I am the one that has to remind hubby of the small things. It is so frustrating for me when the siblings appear to see nothing wrong! Then I have to give hubby a push or 2 before he will bring it up with the rest of the family!!

Sorry, I don't mean to complain all the time. It would be good for us to have a place where we can talk about our LO's and not have 6 different post going another way.

I've gotta go to Dr today. I sure hope he can find a magic pill :D I'll let you know if he does :p take care, Jo

[Tootsie]

My problem with Chat Rooms is that most people have gone to bed, long before I get to use the computer. Living on the west coast is a real problem when dealing with businesses, friends and relatives in different time zones.
Since I am not dealing with Alzheimer's Disease in any one close to me at the present time, my role is quite different than those still living the nightmare of caregiving and watching that precipitous decline. I will always be around, just not at specific times. Cheerio.

[Jo6]

I'm sorry, I didn't mean to put you on the spot. You are so good to help others, I see your post many places encouraging others.

I also understand the east/west coast. I have grandson in San Diego and after a # of years he still doesn't want to keep the "time rule"!!:mad: Believe me, I don't stay up until 3:00 a.m. just to chat with him.:p

You have been a great help to me for many years and I will always remember the help you had coming my way when my brother died.

I understand and I appreciate the love and kindness you give out everywhere. take care, Jo

[Chat Moderator #1]

I am still waiting and watching to get 10 names so I can make an Alzheimer's Chat Room.

I know how much Jo6 wants a chat room and it is very easy to use.

Thanks,

CM #1
FlashChat

[Jo6]

Thanks MC#1 FlashChat!

It you are wanting to open up a private Alzheimer's please put your name on this thread. We need 10 signatures. We have 8.

The FlashChat Mods. will set it all up and explain anything we need to know. This would not interfere with posting any other place on the forums. I think it would be good so we could talk in "Real Time", at least part of the time. Just put you name on this thread. It would be helpful:) thanks, Jo

[joy]

I'll add mine but doubt I'll ever be able to chat. I see where it could be very helpful to those who do need it.

[Chat Moderator #1]

Hi, the chat rooms are not working well right now. We are waiting on John to do some updates. :confused:
But when chat is back to normal I would like to be able to make an Alzheimer's Chat room.

So please sign up on this thread, the rules say we need 10 names, but we don't shoot you if you sign up and then don't use the chat room. ;)

If I make the room and it isn't used, then as David says, "we can always bring in the wrecking ball". :eek:

The reason we are doing this to make new rooms, is in the past a long list of rooms has been created and never used. So we need some idea of how many people might use the chat room.

Please help Jo6, she has worked so hard to try to get a chat room and I think you would like it when you start using it.

Thanks again,
Chat Moderator #1
FlashChat

[CanRelate]

Hi all:

My dad is just beginning to have possible dementia issues......just some things to watch (says my sister the nurse/hospice professional, who witnessed several things over a long weekend visit...).

We also have a family friend (peer of my dad...high school buddy) that has diagnosed and currently treated symptoms of A. So far so good....

I can see that being able to turn to you all with questions/comments/ideas would be helpful....and comforting if things get to that point

Add me to the list...

Warm regards,
CanRelate

[Jo6]

It does look like we will have enough. Thank you for the encouragement. I know it will be awhile, but just thinking about it encourages me already.

I really do feel a need for this. Of course I could be wrong, but famlies with Alzheimer's Disease it sure can help. It's been a long haul here, but I think God looks after his children and the elderly. My heart breaks everytime I go to the NH. I want to bring them ALL home with me. lol

Thanks to you as well as those that expressed a desire to have an open chat where we will all be on equel footing..

Talk later, Jo:)

[Jo6]

Thank you too CanRelate. You will be an accent. Thank you, Jo

[joy]

so you have enough right? Just waiting on updates. I can see how chat would be very helpful thing to have. I am always so grateful when someone takes the time and energy to answer my questions here or on any forum.

[Jo6]

well, it sounds to me like it might be a do-:D able. Course we gotta wait for the updates and what not. We can still talk here as much as you want. I don't want anybody to feel they aren't welcome. Everybody is free to post here. We have more in here than we've had in quiet awhile. I just hope all will speak up with their thoughts and feelings. Like MIL, her condition changes almost daily. All are welcome. Thanks Joy, forgot to do that the other day:)
Blessing, Jo

[joy]

thanks Jo. For now, my problems with alzheimer's is over as my mother passed away in '04. But I sure needed all the help I could get then. Advice was hard to find anywhere and I remember coming to the old board and venting many times more than anything. But that in itself was a good thing to be able to do! My own mother I now realise was more a case of dementia but also she had very low B12. I now know just how good a thing it was that our family doctor knew enough to have her tested. I will forever be grateful that he did as things improved a bit for her. But she did become a very quiet person. I still regret to this day that I never followed up on some things, for instance, asking for an antidepressant for her. Her whole life changed when she had to move in with me. Mine did too but I had to stay home because of a foot ulcer and her going places came to a halt.

I still like to check in every now and then as I remember all to well the feeling of being in this all by myself back then. It was always a good day when I did post and someone, any one answered me. I knew I was not all alone at all then. Just that fact alone helped me tremendously. I think alzhemiers is like cancer, we will never be out from under the scare of it entirely. And never know when we will be needing help again.

[AJ49]

Alaska here so I guess I'm at the end of everyones time zones. I sure could use some encouragement now and then even though my sis and I have things worked out as best we can.

I couldn't help our mom physically anymore, she would hang on me for support while walking, as I have MS she would knock me over, so we moved her to live by my sis. Now sis takes her shopping, out to lunch, to doctors and I do the financial and computer info stuff. Together we make a whole caregiver.

I've gotten a lot of help from all of you just reading here!

[Jo6]

I've been away a few days and just got around to checking my mail. I can not tell y'all how much it means to me to read about the help they have gotten from this forum.

I know it isn't my doings, but this is what I was hunting when I landed here in BT. Joy, you have much to share if you want to. You have been down this path even if it was dementia of some kind.

, I was realing down until I started reading here. The words have meant much to me. I hope now when they get the Chat rooms started we will have a new home. We can still post here but at times it is good to talk to a real live person.

I care about you all, Jo

[Jo6]

Alaska here so I guess I'm at the end of everyones time zones. I sure could use some encouragement now and then even though my sis and I have things worked out as best we can.

I couldn't help our mom physically anymore, she would hang on me for support while walking, as I have MS she would knock me over, so we moved her to live by my sis. Now sis takes her shopping, out to lunch, to doctors and I do the financial and computer info stuff. Together we make a whole caregiver.

I've gotten a lot of help from all of you just reading here!
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It's good to meet you ,but I'm sorry for the reasons you are here.
Yes, I think we all need all the help we can get. I know I do. MIL was dx'ed so long ago It feels like forever. It is such a sad disease. I hope you will keep coming and sharing. It sounds like you have much to add.

talk later, Jo

[Tootsie]

I am more likely to participate in a Chat Room when there are others here on the west coast to talk to. Since I am not actively caring for someone right now, my contributions tend to be more in the line of support and suggestions rather than requiring help. Cheerio.

[Chat Moderator #1]

I just wanted to let you all know that I have not forgotten about making the Alzheimer's Chat room. The chat rooms are almost impossible, well they are impossible to use these days. You get booted out every few minutes and it is very frustrating. :(

We are still waiting for John Lester and David Hosobuchi is trying to contact him but John is or has been travelling again. Nothing can be done until John does the work himself.

But please be patient, we will get the Alzheimer's Chat room made for you. :) It is the #1 thing to do on my 'to do' list when chats are working again. :D

Thanks for your patience.

Chat Moderator #1
FlashChat

[rumpled]

I would join in if I could catch people. I am on the east coast.

[Cry Tears]

Help!...she's going down hill fast!
I'm shocked to see how bad she is right now.
She does have pockets of being somewhat "ok"....then bamm!
She's screaming, yelling, freaking out, playing childish games like she did when I was growing up...she was always weird!
Now weird ALL the time!....my siblings have nothing to do with her now,
I'm about only one around besides her new husband....and he's very low IQ, causing problems for her medications, etc.
I'm interested in chatting with others who have loved ones with alz.
I'm in the Pac NW, Oregon.....brrrrr!
cheryl

[Jo6]

I wrote you a nice little post and the blankety blank thing went to post eating thingy's. I will write more later, but Welcome and Please come back.

Our LO's act in different ways on different days. Sounds crazy, but I was never able to put MIL in any of the stages.

Now that she is so low I see more and more that she is in certain stages.

Take care and come back. take care, Jo

[Tootsie]

Cheryl, I've read your other posts on other forums and am trying to recall if you were the person who had a Mom with a history of alcohol abuse. There is a specific type of dementia associated with poor nutrition and alcohol abuse, over a period of many years. If I remember correctly, the older term was something like Korsakoff's Dementia, although I may have the spelling and even the name wrong.

It is always difficult to deal with any kind of dementia, and the progression can be a highly individual thing. One consistent factor is that the dementia never seems to improve the basic personality. If she was a pain in the neck all her life, she will still be so! You may be compelled to report her care giving situation to Adult Protective Services to make sure she receives appropriate care. It is never easy. Take care. Cheerio.