When are there people in the chat rooms? I have been watching and hoping to get involved in a discussion with people like me, and have never seen anyone in the rooms.

Community members visit the "Chat Room" every night beginning at 8:30 PM EST. Please feel free to join in; everyone is welcome!

I really don't know why more people don't participate. I have only been able to find people there twice, and both times it really helped me.
Maybe people just are not comfortable with it.

I am new to this forum but I have a lot of idle time too much lol I plan to keep watch in the chat room incase someone needs to talk. If I do not answer right away be patient probably outside with the dog but will return shortly. We need to be there for each other if just for a smile which there are too few of. please feel free to tell me if I offend anyone not trying to butt in but need to feel useful and have some purpose.

Hi, I've met a few of you on chat. Just keep trying. Most come on at 8 or so.---------M

Call for Alzheimer's Association to ADD AGENDA ITEMs!

These Agenda additions will better serve our membership:

1) Dr. Tobinick to report on the use of Enbrel and the Perisinal treatment for AD.
2) Panel Discussions: Off-Label Drug Use and Patient Care.
Two Panel Groups Represented:
a) AD Patients and Caregivers.
b) FDA, Medical Community, and Drug Companies.

ICAD
The Alzheimer's Association International Conference on Alzheimer's Disease (ICAD) brings together the top dementia researchers every two years to engage in a multidisciplinary international exchange of ideas.
When: July 26-31, 2008
Where: McCormick Place, Chicago, Ill.

Dementia Care Conference
This annual event for dementia care professionals features the latest developments in Alzheimer care and support.
When: August 24-27, 2008
Where: Hyatt Regency, Garden Grove, Calif.

In the interest of helping members through Education, the addition of these Agenda Items is requested. We all need to stay current with progress and replace controversy with knowledge.

Robert Lee

My Mom was first diagnosed with Alzheimer's a couple of years ago and I've watched while the greatest Mom in the world,steadily declined to the point where she barely reconizes me. She lives some distance away with my Dad so I don't get to spend as much time with her as I wish. I've just left her after a visit and I have so many feelings I need to get out, but I can't seem to find the words to say. I can barely see the keyboard through the tears. I live alone and right now I don't feel as if I can make it through another night. Seeing how much my Mom has declined so much since I last visited has left me with so many sad memories of how she used to be and me wishing now that I could take back any cruel words I may have said to her when I was younger, and for the times I had something better to do than to spend some time with her. So many tears now. How can God be so cruel to my Mom? I hurt so much now because I know she is hurting so much. I'm not sure I can go on. Thank you for giving me a chance to speak.

this is my first visit to this website.
My husband was diagnosed at the age of 63 with
dementia. It was such a shock. But it explained
so many of his behaviors.
It is now two years and it seems as though he
is starting to decline or having more frequent
bad days.
He gets confused so easy and thinks people are
taking his keys or items of clothing. I know
these are symptoms as I have read everything I
find on this disease. He is also very paronoid
much more and gets very agitated.
I dont know if the namenda and aricept are
working for him anymore. I have to look directly
at him when talking and touch is good.
I now have to make very simple sentences and
reasure him things are going to be fine.
He does acknowledge his disease and it is
heart breaking.
He basically has nothing to do all day as I
work. I know he could perhaps do something
simpe. But finding someone to want to let him
help is a whole different story.
I know how important it is to keep his mind as
active as possible. Does anyone have any ideas
or helpful information. We are in a financial
catagory that does not allow us to benefit
from any programs.
Most are very expensive for adult day care
programs. I also have my 87 yr.old mother now
living with us. I was hoping that perhaps they
would keep each other company but that has not
happened. Does anyone have a loved one with
dementia ? Perhaps you can offer some insight.

Carol D.
Topeka,Ks

I have AO .THere ,I said it.It hurts and I hate it .Fat lot of good that does.I can still drive.I can cook.I don't much but there is still much I can do,if I can stop feeling so sad.I am of no earthly good to anyone now .All I want is to pull the covers over my head and sleep.Can anyone tell me how to dig myself out of this lethergy?

I was dx at age 57 with EOAD.At age 66 I was redx with Vascular dementia.I accepted things as they are & went on living.You can too..............

Maggador

There are several who come around 7ish p.m. central to the chats. We've been having as many as 14 come then. We'd be very pleased if you could join us! We'll treat ya like family!

Sam

I was on chat last night. I am in CA, so it is hard to get on in time.

If anyone wants to chat or email me, I am open to it.

Hugs to all.

How do I and when do it get involved in this live chat room? I am CST Thanks for a response. MToodL

MToddL,
The page you are reading this on: scrool to the very top. You will see CHAT ROOM INDEX. Click on that. it will take you to a list of rooms. Most of us are in CHATROOM 1 for starters. Follow procedure to register and join us. We normally start about 7 pm central. Everyone is welcome.

As someone w/ Alz. being in a rrom w/ complaining from caregivers doesn't make you want to go back. I have read so much complaints on posts and people in need of support from care givers. Forget that some of us w/ the disease read what is written and will be in a chat room while the complaing is going on. We can be chatting and get ignored because we have the disease and someone feels what we have to say has no validity because what our brain is small, even if what we say is true or factual. True there are some very very nice people in the rooms, but get the complaints started while being in a room and I'm telling you, it won't be a very welcoming feeling. Support is suppose to be not just for a caregiver, if the job is too much, don't do it people. If it got to the point where my husband had to go online to complain the way some of you do then my guardians would step in. Shame on some of you for the things you write on the boards and the things that you say in the chat rooms. Keep in mind some of us w/ the disease read what you write and what do you do to make us feel alive and worthy, complain and make us feel bad for even existing. Telling us we are "lucky" to have a spouse. Ignoring us. Giving us advice the Dr. already recommended us not to do. I have a bad memory but still deserve some dignity as does the rest of patients w/ this disease do and those who post on the boards should keep in mind this place is for not only the caregiver but the patient. I don't think it's too much to ask to not make me feel like this is your place but our place instead.

Hey Prinny,

I want to apoplogize for anything disrespectful that I may have posted here. I do not pretend to understand your feelings and can only imagine how pained that you must be.

It must be very discouraging to read some of these posts and to follow along in the chats.

I can only speak for myself, although I am sure many feel the way that I do, when I say that I tend to be complaining here because I don't have the opportunity to vent in real life.

My peer group ( thirty something tennis playing moms ) don't have a clue about AD and have nothing to offer me as far as help and support.

On this site you will find the most loving caregivers in the world.

So sorry that our comments may have caused you pain. I will be more considerate in posting from now on. Hope to see you in the chat room again. Have you seen chat room designated for the AD patient ?

Praying for you....Peace,
Dani

Dear Prinny,

I was in the chat room last night when you were
there. I am so sorry it was a bad experience
for you. I was in no way aware you are afflicted with this disease.
I dont know if anyone else was aware of it either.
For me the people on this site offer many great
insights on thier experiences in dealing with
the disease of thier own loved ones.
I am new to this as my husband was diagnosed
with dementia two years ago. I am not as yet
experiencing what most everyone there has already gone through.
I dont consider what is said there as complaning
but a release of emotion and frustrations in
taking care of there LO with this dreaded disease. The chat room is a place where caregivers can go to relate to people who go
through the same thing they do day after day.
It is the same thing as a support group only
on line. oh my I have learned a wealth of information in regards to different kinds of
ideas for home saftey,dealing with different types of rage,experiences of others with medications,how to find extra funding, different ways to approach our LO's when a situation gets out of control. I think I learn
something new every week. I have gone on many days depressed and when I leave I feel like a
weight has been lifted. I admire and respect
all of those who spend every waking minute
taking care of the loved ones.
Everyone always has something to contribute.
The two men who are on the site daily give me
inspiriration and the sense that I know when it
starts to get rough I will have the strenght
to handle it . They are truly awsome gentlemen
and thier wives are blessed.

As for any caregiver or care taker it is a scary
time especially when it is new to you and your
doctors are not supportive and dismiss it as
this is the way it is and it will not get better
What happened to the compassion of our medical
community.
Oh I know there are some wonderful compassionate
doctors I just havent found one. When I go on
I dont go to complain. There are days when I have had a bad day and I can tell others who
have had the same kind of bad day at one time
or another and the wonderful thing is they
all listen and offer comfort or advice.
Prinny I am so very sorry u saw it as a bad
experience. I have gone on the ALZ site where
people such as yourself talk about thier disease and it just breaks my heart. I hope u
and you husband have a good support system and
friends who understand and are helpful.
I hope your family will be there to support
you and your husband. Again Prinny my heart
goes out to you as well as your family.
I pray for all of those afflicted by this family of diseases that God will use his
healing powers.
May God bless
you and your loved ones

Carol

Well yea but lets lighten up on caregivers. I have visited the caregiver chat room because it was difficult to link up with the patient chat room. So perhaps I was going where I did not belong. The chat room was really fast and I hard time followng the train of thought. Yes some of them have a "perverted since of humor" But we are in a "perverted universe". I hope I can, as a patient, continue to excersize some sence of humor and understand that all of us - patients, caregivers, and family experience pain, confusion, and incredible challenges. I recall my experience (total denial) of my father's condition - rest of the family also ignored it thinking he was just his old "mean" self - well shame on me. I also recall my motherinlaw and it taking me 10 years to figure her condition. Then I became the caregiver - wow was that an experience; I felt overwelmed with my feelings of being alone with this challenge. We gave her another year of as meaningful a life as we could - I learned humility...After her passing I learned of my condition so .....I have been on several sides of this journey. I can see in my wife now and her confusion of putting up with me. The hesitation when anger is building over something dumb I have done --- then a smile --- she is my caregiver and I know it is she who is really paying a price for my condition. I pray that she is not visited by the condition - I pray she is spared and I can go in her place. Is this my inherent goodness --- or is it because maby I feel being the patient could be easier than being a caregiver for her?? I love her and thank her for putting up with me. I hope she has a place she can go and vent her concerns and feelings as my caregiver and receive some since she is not alone. I hope that if she says in a chat room how frustrating I really am that others don't chastize her or other patients who are on the chat get their feelings hurt. I wont and I wish she could say to me - "Man, are your frustrating!!! How many times have I told you to...." (the list must be long) I hope my peers will put up with her on a chat line. Love ya all. MToddL

When I went on the caregivers chat line I announced my status as patient. People were nice. I enjoyed seeing the discussion - was is if I were in a room hearing all these people having a number of conversations at the same time. Lots of noise, visiting, sharing...It was hard for me to participate because I was so new and slow. They were nice to me. Love ya all for reading. MToddL

Prinny-
I am very sorry that you found the chat room rude or ignorant. I can't even imagine what it is like to have AD but all I know is I see my dad with it and it breaks my heart. I am sorry if anything that was said was hurtful to you.
I don't feel as caregivers we are complaining. Caregiving is very hard to do esepcially to the people that are so important to you in life. The frustration of the disease is overwhelming to everyone and even more overwhelming is that the doctors seem to be at a loss as are we as caregivers.

You mentioned if it's that tough than don't do it. Well that is not an option for me nor is it for any other care giver. What we do is out of love for our loved ones with this disease and I will tell you its the hardest thing I have ever done in my life and I know it's only going to get harder. I just know that when I am feeling down I find my new friends on the chat who pick me up off the ground and make me stronger to care for my loved one.

I for one enjoyed when you were on the chat the other night, it gave me a perspective of how someone is feeling who has this terrible disease. It was a learining experience speaking with you and reading your posts on how you felt and I thank you for that.

I am sorry it did not work out so well for you.

This is why there are separate chat rooms for caregivers and sufferers. We each need to have separate spaces with others who understand our frustrations, pain, grief, etc.

I'm not going to defend our crying, complaining, etc. It is entirely appropriate in that particular chat room. We let off steam so we can give our LOs unconditional love. We share tactics and successes; we share failures and frustrations. None of that is probably very nice for you to hear, but it's necessary for us or we wouldn't be able to maintain the level of care that we maintain.

There are times, however, when patients and caregivers can learn a LOT from each other...

so here's my suggestion.

Could the administrators make another chat room option? One for caregivers; one for patients; one for mixed!!

That way we can be with our own group when we need the kind of comfort only our group can provide...and we can be with each other in a mixed environment to share and care and learn.

Thoughts??

Yes All of us are constantly challenged to be more forgiving and less inclined to blame others. God loves us as we struggle with this basic of human challenges. It was interesting to go on the Caregivers Chat but I learned that they are moving so fast that its hard for Az patient to keep up. They are dealing with their own needs to share their work with others. For those of us with Az that are able to I hope caregivers can encourage us to use our chat room. Thanks MToddL

First of all. you people posting here are very kind. Please do not mistake what I am saying as I think anyone of you are evil or ill willed or anything of the sort. I shared w/ some and maybe I shall some post some of my thoughts here now. I was told by my Neuro, my husband, and others, already, (STAY OFF THE BOARDS) I didn't listen. I read all kind of stuff. I didn't hear all negative only off the chat room. If that is what I said. I apologize. Truly, my post probaly sounds, ugly and it's not intended that way as my heart works quite well, just my brain that doesn't, so bear w/ me. Some posts do come across as mean and outright undignified to the patient. For a patient like myself who has the disease to read a post like "I let my mother clean the house" yet in the same post "she drives" and I know better than anyone if we are not hurting ourselves to keep busy is best, what is this "I LET MY MOTHER CLEAN" it sounds, and I am saying, it sounds to me like it takes away someones dignity who is still very much living in her own home. From what the post was saying. I read many things like also people think someone forgetting or things like that is selective. There are many many posts, some people never realize who reads what no matter how old the post. Some things can be hurtful is what I am saying. Some haven't got the scoop on even what they are saying. Also, I had posted a thread for patients I wanted to chat w/ because many people haven't wanted to deal with the situation and then becaome into the situation they are in to become a burden to a caregiver who doesn't wish to be caring for a sick person. Many people are caring for sick bacuse they have to and because the patient absolutely did not prepare. I have prepared everything down to what kind of nursing home I want to be in. I have gone so far as check the hiring practices of employees and administraters. Many hire RN's for Alzheimers wards and on their websites say Alz. experience would be nice but not required. All you have to do is check website and employment and you can get an idea. The patient can do things like this while they are in early stages. My intent has never or is not now to ever attack caregivers I'm just correcting some that I think are not appropriate in their chatting practices as some of us do have the disease and I don't think scares us serves a purpose by calling care homes dungeons. I'm here to plan and prepare and network w/ others to see what other kind of planning I need to do. Never did I say everyone is a complainer, some people are here for support, some just whine. There is a difference. Some patients are being selfish themselves by not planning long term for their loved ones. I never came here for any other reason but plan long term for my loved ones and make sure I didn't become a burden if I took care of everything I should be doing myself while I could. Many patients haven't directed who to care for them. Please keep that in mind. Those that have responded are probably not ones who have written ugly things is my guess, and if you are I wouldn't remember your names anyway. But anyway, I'm staying off the boards now but my purpose was to come here so I could prepare. Thanks

P.S. Yes Caregivers I would have gone to my own chat room had I wanted to chat to myself, No one was in there for the past week. I wanted to be around others. I do apologize for going in your space. The room said it was support it didn't say it was only for caregivers. The Alz. room say's it is for patients but no one seems to go in there. Thanks though. I will stay off the boards and leave you all alone. Sam in Tx, you have been very nice if you read this.