Discussing the Alzheimer's Diagnosis With Your Loved One 6/21/00


ElderCare Answers: Special Host Janet Walsh from the Long Island Alzheimer’s Foundation. Topic: "Discussing the Alzheimer’s Diagnosis with Your Loved One." June 21, 2000 8:00PM – 10:00PM EST

 RichOBoyle> ..

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RichOBoyle> Hi Janet!

[JanetwHOST] Hi Rich

RichOBoyle> have you ever participated in a chat session before?

RichOBoyle> ..

[JanetwHOST] only 40+ for five days after first becoming an AOL member. Scared me to death!

RichOBoyle> AOL chat rooms can be quite chaotic

RichOBoyle> it helps to have a focused discussion topic

[JanetwHOST] can't get anymore focused than this

[JanetwHOST] ..

RichOBoyle> ..

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[JanetwHOST] Welcome Matt!

RichOBoyle> Hi Matt and welcome to ElderCare Online

RichOBoyle> You're the first attendee...we will wait for a few more arrivals

[duby3] Thank you - Good evening all!! Thanks for having me.

RichOBoyle> where are you Matt? I am in Islip

[duby3] I promise to behave - well, sort of!!

[duby3] I am in Great Neck. Recently, moved here from Hauppauge.

[duby3] to have made this her aim. I do not know if you have had an

[duby3] opportunity to read LIAF's Mission statement but that really says it

- all.

RichOBoyle> yes...our missions are very close

RichOBoyle> that is why we both seem to be drawn to each other

RichOBoyle> i also like to be able to connect with people close to home (NY)

[JanetwHOST] MAtt is in a group with ten others?? Is that how many MAtt?

[duby3] I can only say thank you!!!

[duby3] Our group has ten people. Very ecletic crew!!!

RichOBoyle> your welcome of course

RichOBoyle> but there is a common thread that draws you together...that is what we mean by "community"

[duby3] Teachers, doctor, police officers, cinematographers,

[JanetwHOST] Matt describe ALZ club

[JanetwHOST] Matt is a true hero. He and several other members of early stage support group visit hospital during grand round and present before physicians and fellows.

[duby3] ALZ club meets every Friday.

[duby3] Each week is a different program

RichOBoyle> topics for discussion or activities?

[duby3] It can either be a slide presentation, a general discussion, some person who has a real way of helping us cope with our

[duby3] AD

[JanetwHOST] Politicians, journalists, spiritual leaders, etc, come to chat.

[duby3] SAS - STIMULATION, ACTIVATION, SOCIALIZATION

[duby3] Keep the mind active -

[duby3] We have had a range of folks

[duby3] Lady from Southampton who did a slide presentation of the town "Now and THen"

[duby3] Another session we had Paul Vitello(Newsday Columnist)

[duby3] Without hesitation - LIAF has made a real difference in my life.(

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[duby3] Rich - the links you have, are they mainly for caregivers, AD

- clients?

RichOBoyle> Hello swanklet and welcome to ElderCare Online

[JanetwHOST] Welcome Swanklet

RichOBoyle> most are for caregivers

RichOBoyle> but some of the links could definitely apply to both

[duby3] Welcome Swankley

[duby3] SOorry - Swanklet

RichOBoyle> swanklet...we have just gotten started.

RichOBoyle> Janet is our hoist from the Long Island Alzheimer's Assn

[swanklet] Hi My husband was diagnosed to have alzheimers about 10 days ago

[JanetwHOST] we tried a chat room for AD clients but they kept forgetting when it was no pun intended. We would need to have some type of prompt.

RichOBoyle> where are you and how old are you both?

[JanetwHOST] Swanklet how long have you noticed changes?

[swanklet] Topeka, KS . I am 72 and my husband is 74.

[JanetwHOST] Recently diagnosed Alzheimer patients can experience a range of intense emotions, from shock, disbelief, fear and sadness, to relief.

[swanklet] About a year and I have had to keep taking him to docs to get it diagnosed

[JanetwHOST] How did your husband take the news?

[swanklet] I do not think he realizes.

[duby3] Was he told?

[swanklet] I am at a loss to tell him. He wonders when he will feel better.

[duby3] Janet, May I?

[JanetwHOST] AD still does not have a simple test for diagnosis. While most things have to be eliminated, now we can also include some symptoms and testing for a proper diagnosis.

[JanetwHOST] Matt please join in

[swanklet] Yes. Both of us were in the doc's examining room when she told us and gave us some folders to read.

[duby3] Swanklet, the worst thing you can do is hold this from him. The concept of not knowing what is wrong with you can be even more frightening.

[swanklet] She scheduled him for an EEG and a lumbar puncture, and MRI

RichOBoyle> Matt can you tell swanklet about your condition?

[duby3] I have been diagnosed with AD; I did not like hearing it; still do not fully accept it BUT

[JanetwHOST] I am not crazy about the lumbar puncture. Matt did you have one of those?

[JanetwHOST] Did your physician make the diagnosis before he had a brain scan (MRI)?

[swanklet] Do I accept the doc's first diagnosis ad

[duby3] Swanklet - my wife began to notice a "lack of concentration" - a staring off into space. I went through a variety of tests

[swanklet] as correct or do I wait for all the tests?

[swanklet] He had a brain scan in March and has had another one now.

[duby3] including MRI, PET scan, and the SPECT Test. Did show an abnormality - I reacted in a truly negative and intese way!!

[JanetwHOST] Has your husband experience any depression in his past few years?

RichOBoyle> ..

[swanklet] Yes, he is being treated by a psychiatrist for depression.

[duby3] Any medication?

[swanklet] He is taking Effexor and Wellbutrin

[JanetwHOST] Depression can be easily misinterpreted for AD, but the catch 22 is that many people with AD are also depressed. Has the depression medicine helped any?

[duby3] Are both for depression?

RichOBoyle> janet, matt....do you know of any things that will help to differentiate between depression and AD symptoms?

[duby3] Personally, I never thought anything was wrong with me - so not depressed. When given the diagnosis - terrible!!

[swanklet] Yes, somewhat. The psychiatrist was a neurologist before switching to psychiatry. Yes. both Effexor and Wellbutrin are for his depression. He has been treated for depression since last August.

[JanetwHOST] Generally, the depression medicines will show little or no improvement after awhile. A series of tests with the psychiatrist should help.

[JanetwHOST] If there is little improvement and the brain scans lean toward AD and the blood work has eliminated all other causes of temporary dementia then he should start immediately being treated for AD.

[duby3] Since the doc diagnosed the AD, did he prescribe any medication

[swanklet] He was tested by a neuropsychologist last August. The neurologist started him on Aricept but he has been nauseated since starting it. The doc said to stop giving it until he gets over the nausea.

[JanetwHOST] The cholinesterase-inhibitors such as Aricept or Exelon have shown some real value in slowing down the progression of this disease and relief from some of the behavior difficulties sometimes accompanying AD.

[swanklet] I certainly hope he can handle Aricept soon

[duby3] As one who has AD - myopinion - better uncomfortable than letting more brain cells dying. Did Dr try Exelon?

[swanklet] I probably will get in touch with the doc tomorrow since he is handling some food OK today.

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[JanetwHOST] I disagree with the doctor. Your husband needs this medication. You should contact the manufacturer, Pfizer , they have a hotline to answer your questions. They certainly can help with the nausea which should be temporary. The long term benefits outweigh the initial discomfort.

[bailheid] hello

RichOBoyle> hello bailheid/loretta and welcome tonight

[duby3] I am taking 10mg of Aricept daily. This is one medication he should force himself

RichOBoyle> we have been discussing swanklet's husband's erecent diagnosis

RichOBoyle> Matt Duby (duby3) is a member of the Alz support group in NY...he has AD

[swanklet] If I contact Pfizer, how do I handle this with the doc?

[duby3] Hello Loretta(or do you prefer Bailheid?)

[JanetwHOST] Swanklet, socialization is the next topic to discuss. Your husband must remain active and stimulated.

[bailheid] I'll sign in Loretta from now on

[JanetwHOST] Tell the doctor about the discussion group, talk to Pfizer and go in armed with info to your Dr. a good physician will appreciate all the work you are doing.

[bailheid] my husband is doing well on aricept I can see the differancde

RichOBoyle> bailheid...how long has he been on it?

[swanklet] Thanks. I will do that. Can I contact Pfizer via the web?

[JanetwHOST] Your husband should also be taking vitamin E and other antioxidents -- but all of these no matter how natural must be discussed with your physician

[bailheid] 1 year

RichOBoyle> http://www.pfizer.com

[JanetwHOST] Vitamin E can thin the blood so your physician must be advised

[duby3] Unfortunately, they(the physicians) have so many ailents to concern themsleves with that AD sort of falls in a "non-problem" because of age

[duby3] Loretta, how old is your husband?

[duby3] ailments not ailents

[bailheid] 70 but the first dr ignored it for over 3 years

[duby3] Swanklet, by giving him/her this information - it helps them and, if they are good, they really do appreciate

[JanetwHOST] Many of my clients take Aricept, 1000 iu or more of Vitamin E, 1000 mg. of Vitamin C, a good multi for all the b vitamins and folic acid and if tolerated anti-inflammatories.

[duby3] Loretta - that goes back to what I said - Unfortunately - everybody just assumes that as you age, forgetfulness if expected!!

[bailheid] ...

[bailheid] that's what the first dr. said

RichOBoyle> when you get ready to discuss the diagnosis...is there anything you should be prepared for/with?

[JanetwHOST] A study was done with twins, Their DNA is so very similar. Why did one twin get AD and the other did not? What they found was the twin without AD had Arthritis and was taking anti-inflammatories for years.

[duby3] Loretta, Where do you live?

[bailheid] NJ

[JanetwHOST] Unfortunately, when the diagnosis is made most people are in shock. It is important to call a local organization specializing in AD to get some up-to-date literature. Make a list of questions and revisit the doctor.

RichOBoyle> should you be prepared for serious depression or suicide?

[duby3] Rich - "anything you should be prepared with" - often wonder if the first time a person hears they have AD, they actually "do not hear it" As Janet said, SHOCK.

[bailheid] I never told my husb he has AD I bring up the subject every once and awhile and he doesn't think he has it

[JanetwHOST] Long term planning must be addressed. I have not heard of anyone commiting suicide with Ad. and I have been in the business a long time.

[JanetwHOST] Sometimes the term "memory loss" lessens the blow.

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[duby3] Personally - depression; thinking your life is over as I knew it - that thought did cross my mind, but not suicide

RichOBoyle> hello msvt and welcome to ElderCare Online

[duby3] Rich - "anything you should be prepared with" - often wonder if the first time a person hears they have AD, they actually "do not hear it" As Janet said, SHOCK.

[bailheid] I never told my husb he has AD I bring up the subject every once and awhile and he doesn't think he has it

[JanetwHOST] Long term planning must be addressed. I have not heard of anyone commiting suicide with Ad. and I have been in the business a long time.

[JanetwHOST] Sometimes the term "memory loss" lessens the blow.

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[duby3] Personally - depression; thinking your life is over as I knew it - that thought did cross my mind, but not suicide

RichOBoyle> hello msvt and welcome to ElderCare Online

[duby3] Hello, msvt

[msvt] Hi Rich and all,

[bailheid] Hi

[JanetwHOST] At the Long Island Alzheimer's Foundation we instruct our clients that they have two options, to start dying from this disease or to learn how to live with AD.

RichOBoyle> we have been discussing the recent diagnosis of bailheid's and swanklet's husbands

[msvt] ..

[swanklet] The thought of approaching it with "learning to live with the disease" is a very positive way to handle it, I think.

[JanetwHOST] Help your husbands to hold onto their dignity, keep them involved, ask their opinion an try to find an Early stage AD support group like the one Matt is involved in.

RichOBoyle> janet can you tell us about some of the long-term planning the comes after an AD diagnosis

[duby3] This is where you go beyond medicine - LIAF(Long Island Alzheimer's FOUNDATION) has offered a place to

[duby3] learn to live with - not just to live with the disease but to LIVE!!!

[bailheid] ...

[msvt] ...

[JanetwHOST] Long Term Planning involves everything from legal issues to dignity issues.

RichOBoyle> dignity issues?

[duby3] My Early Stage group has brought together folks diagnosed. Know we are all "in the same boat"

[msvt] Do we really have to respond q3-4 min on this chat to keep from being cut off?

[JanetwHOST] Many times people don't realize that you can live with Ad for a very long time. The better the care and attitude the longer the lifespan and the higher the cognitive ability.

[JanetwHOST] That is a mouthful. Caregivers have a lot on their plates but the must begin to prioritize.

RichOBoyle> yes msvt...i think it is closer to 10

[swanklet] What shoule be the first priority?

RichOBoyle> but just to be safe :)

[JanetwHOST] Increase pleasant events and decrease unpleasant ones.

bailheid] ..

[msvt] ..

[swanklet] Is there any standard time for the various stages to last?

[JanetwHOST] Find workshops to help you understand your long term needs. Include friends and family-- Don't shut them out.

[JanetwHOST] No one is a mind reader -- if you need support from family and friends -- tell them how they can be helpful i.e. grocery shopping , companionship, driving etc.nds

[duby3] Try to streamline your life a bit. For example, my wife felt it very important to sell our home. Reasons were very concrete: Less concerns about caring for a private home. We now live in an apartment. Equally important was being closer to LIAF.

[JanetwHOST] The length of time for these illness is longer and longer. Better care, better treatments, less stigma.

[bailheid] my husband does not do well away from our home

[msvt] ...

[duby3] STIGMA!! This is certainly one of my greatest problems.

[JanetwHOST] These suggestions must be a lot to swallow at once but you must try to fight these progression with all your might.

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RichOBoyle> Hello stewmit and welcome to ElderCare Online

[duby3] Though again thanks to my wife, Janet, LIAF, and my group ,I am learning to deal better with it.

[msvt] Hi Stewmit

[JanetwHOST] Laughing and humor is very important. Throw the word embarassment out the window.

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[stewmit] hi everyone

[duby3] Hi!

[swanklet] IHi, stewmit

[bailheid] Hi

[msvt] ..

[stewmit] can anyone help me with finding info on respite care

[JanetwHOST] Leaving the home can be difficult for some. But to stay solely at home without stimulation can aid the decline. Maybe short walks and short visits will work.

[swanklet] My problem is that our only child lives 800 miles away.

[duby3] Humor and laughter - this is certainly a real therapy for the Client and the Caregiver.

[JanetwHOST] Stwemit, where do you live?

[stewmit] new jersey

[bailheid] we go out every day but cannot take trips because he is so confused in motels

[duby3] You live where?

[stewmit] new jersey

[JanetwHOST] Sleeping in new locations can be very difficult. Limit your travel to day trips. Routine can be important to some.

[swanklet] How well does day care work for the patient?

[bailheid] it is to him

[duby3] Loretta - my son lives in Mass(near Boston) and my daughter in Chicago. This is a difficult situation. I really feel for my wife

[stewmit] we're planning a vacation in July.. not sure if it's a good idea to take my mother being somewhere different really throws her off

[JanetwHOST] Stewmit, there are Chapters of the Alzheimer's Assocaiton that can be helpful. One particularly good one in Parsiphany, Is that close?

[stewmit] Not too far I think maybe about 20 - 30 minutes away

[duby3] Yet, because she has become involved with LIAF, she knows she is not alone!

[JanetwHOST] Give them a call -- they have been helpful in the past.

[swanklet] I have wondered how much the patient knows.

[swanklet] , or is aware

[msvt] .

[stewmit] thanks...she goes to a day care center during the day which has really been a blessing.but i'm worried what will happen when she get home and calls me to pick her up

[JanetwHOST] The person is always there. They respond to love, touch and music.

[JanetwHOST] The day care center should have some ideas for respite also.

[duby3] ..

[JanetwHOST] We have a wonderful social day care program on Long Island called the Memory LAne Club.

[JanetwHOST] Mild stimulation is very important. Early on it is important o stay as active as possible.

[stewmit] this week has been really hard for the mom she has no connection to time even though she sees the time she doesn't associate the morning from evening

[msvt] ..

[bailheid] ...

[swanklet] I am very concerned about future costs and how I can prevent losing all our resources

[JanetwHOST] In some ways this is a blessing. She is stress free.

[stewmit] i thought that would be true but it only makes her call me more on my job because the van hasn't come yet

[msvt] Swank, Maybe you should consult an attorney who is experienced in elder law

[JanetwHOST] Swanklet, that's where the long term planning comes in. We hold Elder law workshops periodically to educate people on protecting themselves from impovishment.

[duby3] ..

[stewmit] to pick her up. she lives with me but I haven't given up her apt. I take her home every morning to wait for the van but sometimes they are late

[bailheid] ...

[swanklet] Any Elderlaw workshops in KS?

[JanetwHOST] Loss of employee worktime due to caregiving has become a national focus.

[JanetwHOST] Kansas should have a AD organization, a good place to start is the BAr Association, or the local Area Office on Aging.

[stewmit] when i get to work on monday my voicemail is full with messages from my mother most of the time she calls from my house

[msvt] There should be a system of floating work schedules for eldercare the same as for childcare'

[JanetwHOST] Stewmit - Mom needs stimulation -- she is bored! Have you ever considered an assisted living facility?

[bailheid] ..

[stewmit] no she goes to the center everyday but the problem is the time in between when she gets home from the center and I get off from work to pick her up

[JanetwHOST] Stewmit - you are at great risk -- burnout. This could result in an accident or physical injury. You can not be it all.

[msvt] Could she stay at the center longer or have a hired CG come to stay with her till you get off work?

[JanetwHOST] What would happen to Mom if you were hospitalized?

[stewmit] i really feel like that sometimes.. I am an only child my brother passed away a year ago so everything falls on me

[bailheid] ..

[duby3] Stewmit, I have been listening and can only reiterate what Janet has said

[stewmit] i'm going to look into the lastest time she can stay at the center that would truly be a blessing for her to stay longer

[JanetwHOST] Think about alternative living solutions. I know how hard it is but in every case it has worked out for the best. The quality of time you spend with Mom will be much improved.

[duby3] I have been diagnosed with early Stage AD and one of my greatest fears is my wife having the total responsiblity of caring for me

[JanetwHOST] Anything else on anyone's mind?

[msvt] Stew, If your mom could stay longer or yu could get an inhome CG for after the daycare maybe you could give up her apt and that would free up that rent money to pay for it

[swanklet] Yes, I am terrifies of all the responsibility. I know there are many changes that must be made but I do not know how ro prioritize.

[stewmit] that would be an alternative because she's only at her apt. an hr in the morning and maybe and hr or 2 in the evenings

[JanetwHOST] As you can see, I am a fix it person. Meeting with a social worker trained in dementia care can be very helpful for a family. It is with this person you could outline a care plan.

[bailheid] ..

[JanetwHOST] Stewmit, I will not allow you to think of this as failing as a caregiving. You are failing yourself and your Mom if you don't take care of yourself.

[JanetwHOST] I visit more caregivers in the hospital than I do AD sufferers

[duby3] Stewmit, Janet is right - do something. Seek professional help. You sound like a wonderful persona nd caregiver. But you must take care of you otherewise, you are not good to your Mom or anyone.

[JanetwHOST] For all caregivers, please do not wait unil a crisis occurs, it limits your options. You must have what I call a "what If" plan.

[JanetwHOST] The best plan is to be flexible.

[JanetwHOST] I think I wore everyone out , Rich

RichOBoyle> lol

[msvt] Nah, we're just getting warmed up

RichOBoyle> i am reading back over the trascript...looks like a lot of discussion :)

RichOBoyle> Janet and Matt.. can you stay a bit longer? I know it is later than 10:00...

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[stewmit] i'ts been enjoyable :)

[JanetwHOST] I am here for the journey.

RichOBoyle> stewmit...we haven't met....I am the founder or this site and host a few chat sessions

[stewmit] nice to meet you.. i found out about this site through a friday night chat

RichOBoyle> where are you?

[stewmit] new jersey

[msvt] ..

RichOBoyle> i grew up in monmouth county, Aberdeen, located in NY now

[duby3] ..

[stewmit] essex county all my life.. i am a cg to my 75 year mom

RichOBoyle> has janet been able to answer ALL of your questions?

[stewmit] she was very helpful... even got me to smile.. which is hard sometimes

[JanetwHOST] My eyes are drooping Rich. It has been a real pleasure and I greatly appreciate being included.

[msvt] ...

[duby3] She really gave us a great deal to work with - good to hear concrete ides othere than just the pap that seems to flow from so many

RichOBoyle> Janet and Matt...thank you so much for hosting such a dynamic session

[JanetwHOST] A kiss for all the caregivers and a blessing of sweet dreams. For MAtt -- just sweet dreams I don;t want to get his hopes up!

[JanetwHOST] Good night!

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