ElderCare Answers May 30, 2000

ElderCare Answers with host Rich O’Boyle
5/31/00 9-11PM EST

>> bailheid has joined channel #XC.1993632

[bailheid] hello

RichOBoyleHOST> hello bailheid and welcome to ElderCare Answers

[bailheid] thank you I read your transcripts and they are interesting

RichOBoyleHOST> great...it is usually best to attend, but that is not always possible

RichOBoyleHOST> you have to wade through some of the banter in the transcripts

[bailheid] I didn't know about you until yesterday

RichOBoyleHOST> how did you hear about the site?

[bailheid] I just keep pushing keys all day long until I find something good

RichOBoyleHOST> lol

[bailheid] so much info it's great

RichOBoyleHOST> what is your caregiving situation?

RichOBoyleHOST> thank you...it means a lot to hear that

[bailheid] my husband he is starting to get worse in the last month

[bailheid] he has short term memory

RichOBoyleHOST> has he seen a doctor about it?

[bailheid] yes he is on Aricept for 2 yrs

RichOBoyleHOST> how has he gotten worse?

[bailheid] he doesn't know where things are in the house, like hot water heater he installed, large items

RichOBoyleHOST> it is best to make notes about any changes and to consult with his docs

[bailheid] he is ok until he has a job to do then his mind goes completely

RichOBoyleHOST> also it is important to be aware that AD is a degenerative disease and gets worse over time

[bailheid] He does not know he has alz but I think the time has come to tell him

[bailheid] I'm afraid he will get depressed

RichOBoyleHOST> some local Alz Assn groups have support groups for people in early stage AD

RichOBoyleHOST> I know of a group in NY (near me) and the attendees are very close and provide support to each other

[bailheid] is that for caregivers or patients?

RichOBoyleHOST> I believe that the website alzheimers.com offers a chat for the patients

RichOBoyleHOST> yes..for the patients

[bailheid] Can I go alone at first?

RichOBoyleHOST> I think you should visit your local Assn and discuss with them and prepare to talk to your husband about it

[bailheid] sounds good

RichOBoyleHOST> they can really provide experience

[bailheid] I went to a seminar once and they said tell if he gets depressed just get pills for it, I don't like that

RichOBoyleHOST> doesn’t sound right to me either

RichOBoyleHOST> he is going to be dealing with a major health issue...

RichOBoyleHOST> and that requires thinking about it and dealing with the emotions

[bailheid] the happier he is the better for me, I'm also thinking about myself (sorry to say)

RichOBoyleHOST> he is fortunate to have a caring and concerned spouse :)

RichOBoyleHOST> dont be sorry about that!

RichOBoyleHOST> rule #1: take care of yourself

[bailheid] too bad he doesn't know it LOL

RichOBoyleHOST> if you are his caregiver, you need to be in the best shape (emotionally and physically) to care for him

[bailheid] right now I am all upset and he is sitting watching tv like nothing happened

RichOBoyleHOST> this may be a good time to prepare yourself...because you will have to deal with him as well

RichOBoyleHOST> this chat is a little slow right now...usually we have a few people in here who can share their experiences

[bailheid] deep down I know it but I think I will feel better when he knows also

[bailheid] they must be tired from the holiday

RichOBoyleHOST> every spouse and relationship is different

RichOBoyleHOST> how do you think he will take it?

[bailheid] I've never held back anything before. I can't even guess, he knows he has a bad memory

RichOBoyleHOST> but AD is more than a bad memory....

RichOBoyleHOST> there are behavior and emotional changes that come with it

[bailheid] it's just not saying the word Alzheimers

RichOBoyleHOST> it is hard to stare it in the face

RichOBoyleHOST> and acknowledge it

RichOBoyleHOST> are you prepared to be his caregiver?

[bailheid] I acknowledge it fine and so do our children, but I have to tell more and more people and I'm afraid they will tell

[bailheid] when it gets real bad I hope to

RichOBoyleHOST> what do you think is fair for him?

[bailheid] would it help him?

RichOBoyleHOST> to be honest, when he gets it "real bad" I don’t he will be aware of his medical condition

[bailheid] he is happy now

RichOBoyleHOST> I think that telling him might help him to talk about things (like in therapy and support groups)

[bailheid] but he knows something is wrong

RichOBoyleHOST> and it may allow him to open up with you and other loved ones...bring closure to issues before he loses touch

RichOBoyleHOST> has he ever asked if there is anything wrong with him?

[bailheid] he is not that kind of person, telling others about himself

[bailheid] he makes excuses for him mistakes, so he knows he is doing wrong

RichOBoyleHOST> I suggest that you visit an Alz Support group and discuss your concerns with the group a group for spouses

[bailheid] I will go next week I think they have them on Weds.

RichOBoyleHOST> the support group moderators can help you to think through your decision and provide experiences and support to you

RichOBoyleHOST> where are you located?

[bailheid] this is all new to me, that's what I need people who know I'm in NJ

RichOBoyleHOST> this website has a list of alz links for NJ...just go to the "Community Center" and click on "Neighborhood Networks"

[bailheid] thanks

RichOBoyleHOST> there is a whole page of NJ links and local support groups for AD

[bailheid] I'll find one

RichOBoyleHOST> I am glad you came by tonight :)

[bailheid] I just had a bad experience at the seminar

RichOBoyleHOST> which seminar?

[bailheid] I am also. It was in Freehold, don't remember the name all they did was show slides and give papers with the same words on it

RichOBoyleHOST> the Alz Assn is the most reputable organization

RichOBoyleHOST> have you reviewed much of the articles on this site?

RichOBoyleHOST> we dont have much in the way of medical info...I suggest you browse through the Medical Research Assistant for medical background

[bailheid] I don't think it was als assoc something else I think it was to get business for themselves

RichOBoyleHOST> there are many matters to clear up if your husband has AD...for example, making sure financial and legal matters are clearly articulated before moderate dementia sets in

[bailheid] your transcripts show you talk about alz not the weather and other small stuff. Which I found great.

[bailheid] I was thinking about going to the aging bureau in Freehold (something like that)

RichOBoyleHOST> some discussion groups are very social in nature...and that is good because caregivers need social outlets

RichOBoyleHOST> but ElderCare Online chats are focused on problem solving

bailheid] Right now I need all the info I can get

[bailheid] most people have parents not spouses and that is another world

RichOBoyleHOST> the best sites are listed in the Medical Research Assistant...it includes links to (readable) textbooks like the Merck Manual

[bailheid] I'm writing that down

RichOBoyleHOST> yes it is....but about 25% of the people who participate here are caring for a spouse (usually husband)

[bailheid] I only meet one person online with a husband with it

RichOBoyleHOST> there is an email discussion group called "caregiving spouses" that you might want to join

[bailheid] yes How do I get them?

RichOBoyleHOST> the Caregiver Support Network has a list of email discussion groups...there is a link to click to subscribe

RichOBoyleHOST> or you can go to egroups.com or onelist.com and search for "caregiving"

RichOBoyleHOST> I always recommend subscribing to the "digest"

[bailheid] You have been a great help

RichOBoyleHOST> would you like to subscribe to the newsletter?

[bailheid] yes

RichOBoyleHOST> it is free and will keep you updated on new articles and chat sessions

RichOBoyleHOST> I will seriously consider having a discussion on "talking to your loved one about the AD Diagnosis"

RichOBoyleHOST> what is your name? I am Rich

[bailheid] Loretta

RichOBoyleHOST> its nice to meet you

RichOBoyleHOST> good luck and please don’t hesitate to contact me or join our discussions again

RichOBoyleHOST> it is best if you subscribe to the newsletter directly through the website yourself

[bailheid] he is due to go to the Drs. so then will be a good time. It was great meeting you thanks again

RichOBoyleHOST> just start on the home page and click on "subscribe"

RichOBoyleHOST> you dont have to answer all of the questions (but it helps to keep my records straight)

RichOBoyleHOST> good night loretta

[bailheid] that was my next question I'll subscribe

RichOBoyleHOST> good night loretta

[bailheid] that was my next question I'll subscribe

[bailheid] good night

RichOBoyleHOST> gnite

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