ElderCare Answers March 15, 2000

ElderCare Answers Chat Session
Host Rich O’Boyle
3-15-00 9:00PM to 11:00PM EST

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[firstolive] Hello
[firstolive] Have you started yet?
RichOBoyleHOST> Hi firstolive
RichOBoyleHOST> Welcome to ElderCare Answers
RichOBoyleHOST> You're the first here tonight
[firstolive] Hello...and thank you happy to be here.
RichOBoyleHOST> How did you find this chatroom? newsletter, newsgroup posting?
[firstolive] I was sooo looking forward to talking to others who know what it's like.
[firstolive] I heard about it searching the WEB.
RichOBoyleHOST> Other caregivers will be joining us shortly
[firstolive] Great!
RichOBoyleHOST> what is your caregiving situation?
[firstolive] I have questions about long term care insurance.
[firstolive] I have been taking care of my father for about 5 years.
RichOBoyleHOST> Did you have a chance to look at the Long-Term Care Insurance Analyzer on this site at http://www.ec-online.net/Assistants/ltcqanalyzer.htm ?
RichOBoyleHOST> It is a step by step approach to learning about long-term care insurance.
[firstolive] I briefly had a chance to "scan" over it. I didn't see anything about Long Term Care Insurance.
RichOBoyleHOST> hmmm. It is prepared by a LTC insurance broker called longtermcarequote.com
RichOBoyleHOST> the information is free and no obligation to read it online
[firstolive] What I mean by scan over it...I basically looked at the Insurance Coverage Channel.
[firstolive] I will definitely look again. Thanks!
RichOBoyleHOST> oh...there is a separate "Interactive Assistant" called "Should I Buy LTC Insurance"
[firstolive] Even though I'm am not a "new" caregiver, I believe I can learn something..
RichOBoyleHOST> we ALL can.
[firstolive] Interactive Assistance....I will look again..
[firstolive] I've tried support groups, but my father was not happy about me leaving him with someone else. So that is out.
RichOBoyleHOST> You really should be able to get out of the house....
RichOBoyleHOST> Does your father have dementia?
[firstolive] Yes!
RichOBoyleHOST> There are a few really good dementia support groups online
RichOBoyleHOST> Take a look at the WW Chat Guide in the Caregiver Support Network at http://www.ec-online.net/Community/Activists/can.htm . It includes links to other chat sessions.
RichOBoyleHOST> Monday and Tuesday nights are best for Dementia caregivers
[firstolive] I was also told he has Alzheimer’s Disease. Isn't this the same thing?
RichOBoyleHOST> Alzheimer's Disease is the most common form of dementia.
RichOBoyleHOST> Do you have the opportunity to get out of the house, even just for socializing with friends or taking care of your self?
[firstolive] Since 1996 I've been taking care of him by myself. Last year my niece came to live with us and she has been watching him. I've started to work part-time and now I work full time.
RichOBoyleHOST> Great for you. You know it is important to balance your needs and at the same time to care for your father. It is a fine line sometimes.
[firstolive] I'm sorry I'm getting a call about my father, please hold on.
RichOBoyleHOST> ok
[firstolive] Okay, I'm back.
[firstolive] My niece and brother (who also came to live with us a few weeks ago) have quite a hard time with him.
RichOBoyleHOST> How old are they?
[firstolive] My niece is 21 , my brother is 43.
[firstolive] She does all she can, but I think my brother is a bit impatient with him.
RichOBoyleHOST> Have they read any background on Alzheimer's Disease?
RichOBoyleHOST> It will take a bit of adapting. Please provide them with reading material from the site, especially tips on communicating with a person with dementia.
RichOBoyleHOST> Are you the only one giving hands-on care?
RichOBoyleHOST> What stage in the disease is your father?
[firstolive] At least that is the way I feel.
RichOBoyleHOST> Try to find small ways for your relatives to participate in the care...
[firstolive] No they have not read anything on the disease, I'll print out something for them to read, and I am the only one who bathes and dresses him.
RichOBoyleHOST> Perhaps reading to him or spending time with him on activities
RichOBoyleHOST> Try to give them small manageable pieces of information.
RichOBoyleHOST> A site like http://www.webmd.com has good general information on the disease.
[firstolive] I'll describe his mental state and perhaps you can tell me. He never believe he is at his home. He is confused about where he is. He still knows who his family is. He has drastic emotional highs and lows.
RichOBoyleHOST> And then look at this site for detailed info on "living with a person with AD"
[firstolive] I will.
RichOBoyleHOST> Where are you located?
[firstolive] Up until a year ago he was still very manageable. I am the only one he listens to and will respond to.
[firstolive] We live in San Diego.
RichOBoyleHOST> That will make it hard for you as the caregiver.
[firstolive] I have notice when I took him off of caffeine, fried foods, fast foods, sugar, etc. his emotional state improved.
RichOBoyleHOST> You should slowly bring others in to help with the care and to get him used to them.
RichOBoyleHOST> Discuss the dietary things with his doctor, he may be having reactions with his medications. Also, caffeine has cause anxiety and sleeplessness.
[firstolive] My niece has been with us a year. It's hard for her because he still treats her like a kid and I think it will always be that way for her.
[firstolive] My doctor is no help. As with many doctors they are not really interested in the patient. These are decisions I have to make on my own.
RichOBoyleHOST> You may want to consider a different doctor if your relationship is not good with him/her
[firstolive] My brother is a new variable, he loves him when he lives somewhere else, but now that he lives with us it's just another man in the house telling him what to do.
RichOBoyleHOST> You may want to find a specialist -- either a geriatrician or neurologist
[firstolive] I've talked and been with at least, 5 doctors who give me the same response. I ask for advice they give me nothing.
[firstolive] That's is why I'm starting to search the WEB and looking into books.
RichOBoyleHOST> You will definitely find good people on the WWW
[firstolive] This doctor he is with is supposed to be a geriatrician. And the neurologist just asks a few questions and that's it. He sees him all of 5 minutes.
RichOBoyleHOST> You may want to sign onto the Alzheimer's mailing list
[firstolive] I'm am on the mailing list. I get the newsletter and he is and has been part of the "Safe Return" program for 4 years.
RichOBoyleHOST> You seem to have covered some of the important things but I would be concerned about the poor rapport with your doctor. Have you participated in any Alzheimer's Association (http://www.alz.org) programs in your area?
RichOBoyleHOST> They can probably refer you to a good doc. Also, talk with other family members who are at the support groups for referrals
[firstolive] I've become very jaded with doctors. You have to understand where I'm coming from, people of color (sorry to use that, but it is true) have a hard time getting doctors to responsibly respond to us.
RichOBoyleHOST> I am sad to say that I agree. I think that the Alzheimer’s Association will be able to break down some of those barriers for you.
RichOBoyleHOST> There is a medical association of black doctors and professionals. The National Medical Association, I think. They might be able to give you some pointers or refer you to an African-American medical team.
[firstolive] I will call them.
RichOBoyleHOST> I would like to put you in touch with a colleague in New York City
[firstolive] I'm sorry what I mean is that I will call and search for a new doctor.
RichOBoyleHOST> Dr. Mary Sano is very interested in the medical care given to minorities, especially as it relates to Alzheimer’s Disease.
[firstolive] Thank you.
RichOBoyleHOST> Her email address is: sanomar@sergievsky.cpmc.columbia.edu
[firstolive] Thanks, I got it.
RichOBoyleHOST> I think you should send a brief email to her (Mary Sano) and explain your concerns with 1-2 examples.
[firstolive] I will.
RichOBoyleHOST> She is very interested in getting the right Alzheimer’s Disease information to minorities.
RichOBoyleHOST> Do you have any particular caregiving challenges right now?
[firstolive] My father system is very sensitive to drugs. He can not take the drugs, in particular Aricept. I only have a problem when my family calls and says they cannot handle him.
RichOBoyleHOST> Due to behavior problems?
RichOBoyleHOST> There are several drugs available to treat anxiety, aggression, etc.
[firstolive] Yes!
RichOBoyleHOST> But there are things you can do to counteract problem behaviors.
RichOBoyleHOST> Read the Coping with Alzheimer's Learning Resource Guide and take a look at the Caregiver Support Network.
firstolive] He has been through the whole list, it has no effect on him except to heighten his hostility.
RichOBoyleHOST> Jan Allen is a mentor and she has written extensively about behavior management
RichOBoyleHOST> I am sorry that I keep referring you to read things :)
[firstolive] The last drug just puts him to sleep. Which is not a good option.
RichOBoyleHOST> But there is always a lot of education that goes into this.
[firstolive] I think reading about this is better than having nothing to read. Thank you.
RichOBoyleHOST> These are very practical articles written in many cases by professional caregivers
[firstolive] I would like to get some really good material on people like me who care for their loved ones.
RichOBoyleHOST> I suggest that you visit the dementia discussion groups on Monday and Tuesday nights
RichOBoyleHOST> Look in the WW Chat Guide on this site at http://www.ec-online.net/Community/Activists/can.htm
[firstolive] I will. Is it around the same time as yours?
RichOBoyleHOST> Yes, There is a complete directory with links to the chatrooms.
[firstolive] I guess I had better go I'm getting multiple calls from home about my Dad. I hope to speak to you again.
RichOBoyleHOST> Take care and thank you for coming.
[firstolive] Goodbye.
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RichOBoyleHOST> Hi Marilyn. Welcome to ElderCare Answers
[marilyn1234] Hello.
RichOBoyleHOST> How are you tonight?
[marilyn1234] I am having some problems with my 73 year old mother.
RichOBoyleHOST> What is the problem?
[marilyn1234] Well, about 3 days ago she began to have paranoid delusions and I don't know what to do.
RichOBoyleHOST> Has anything changed in her surroundings, medication etc?
[marilyn1234] No, that is what is so weird, it is just out of the blue. Her spouse died 2 years ago and she has been lonely, but other than a little forgetful, she was fine until now.
RichOBoyleHOST> Has she been diagnosed with dementia or Alzheimer's Disease?
[marilyn1234] No, I am waiting on a doctor appt next week, but I don't know if she can make it until then.
RichOBoyleHOST> I would call her doctor first thing in the morning.
[marilyn1234] Okay, I was thinking of begging! She thinks she can hear her neighbors through her vents!
RichOBoyleHOST> Delusions may cause her to harm herself ...or you.
[marilyn1234] Is this normal in an elderly person?
RichOBoyleHOST> No it is not normal.
[marilyn1234] Have you any idea what could have caused it?
RichOBoyleHOST> I am not a doctor and really couldn’t speculate. Sorry :(
RichOBoyleHOST> You should make a note of anything that has lead to this – small signs that you didn’t really notice in the past.
[marilyn1234] That's okay, but I can't seem to find any info that would help me. I am very scared for her.
RichOBoyleHOST> So that her doctor has as much information as possible.
[marilyn1234] Okay, she is not on any medications or anything.
RichOBoyleHOST> That is strange
RichOBoyleHOST> It is NOT a normal part of aging....
[marilyn1234] That's what I thought.
RichOBoyleHOST> Have you seen any smaller signs or symptoms leading up to this?
[marilyn1234] My grandfather hallucinated and things when he got older.
RichOBoyleHOST> Again...that is not "normal" either. Changes in brain chemistry and dementia can cause hallucinations, paranoia, memory loss, etc.
[marilyn1234] Okay could it be caused by a deficiency in her diet or something?
RichOBoyleHOST> She needs to see her doctor and then s/he may suggest that she see a specialist.
[marilyn1234] Okay, thanks a lot for listening.
RichOBoyleHOST> Make a note of any dietary matters, for example, what her typical diet is like.
RichOBoyleHOST> Sorry I could not give you definitive answers
[marilyn1234] You have helped.
RichOBoyleHOST> You’re welcome.
[marilyn1234] I am really in need of information on what to do next. I am afraid she will need nursing home care, I am thankful for the site! Thanks again and bye.
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