Volume 2, Issue 5
March 20, 1999

We'd like to let you know that due to work schedules, The Ribbon will now come either on Friday, Saturday, or Sunday of the weekend it's due. We will always try to shoot for Friday when we can.

We are happy to say that this issue is made up of items you all have sent in. We encourage your participation in sending in articles, notes, links, etc., after all The Ribbon is YOUR newsletter.

Happenings

Gathering of Friends

Ok folks, we know there are lots of newcomers so we are extending the deadline for the Gathering of Friends(Link: http://www.theribbon.com/gof/ ). Anyone who would be interested in attending a gathering in Nashville, TN in October of this year must send an Email to both Russell363 and LIZA 513 as soon as possible. They will need to know how many people will attend and how many rooms are needed by April 15th. More information will be furnished to you when you let them know.

Disclaimer: This "Gathering" is being arranged by a group of friends. It is not sponsored by Better Health or AOL, therefore, we ask that you not discuss it in any of the chats as their purpose is to provide support for caregivers not to do planning. If you have need of any information, you may email the two committee members mentioned above. Thanks for your cooperation.

Happenings

Caregiving Book Idea

To Ribbon Readers: Seems our minds were in synch today and Jamie gave me a call out of the blue. I had had a dream the night before that I felt soooo strongly that I feel I need to act on it and Jamie suggested I put the idea out to you guys for some input.

I have had the thought in the back of my mind about doing a book about what it is like to be a caregiver of an Alzheimer's patient, especially in the earlier stages. But that was all it was and to that end I have been keeping a daily journal. That was until last night.....today I've made the decision to actively pursue it.
I would like to make it an illustrated book, and instead of the usual technical and depressing aspects of this terrible disease, try to focus on the humorous events that keep us caregivers from hopeless depression. So Jamie thought some of you might like to share some events that now are humorous (they might not have seemed too funny at the time). Hopefully it will be interesting in regards that other caregivers will be able to relate to some of the events we've all experienced and not feel so alone but still maybe gleen some helpful advice from those that have already gone through it.

That's it in a nutshell and since I haven't had a chance to really get it down yet as to how I'm going to get this accomplished, any input from you guys would be greatly appreciated. Even as to other things you would like to see in print, bounce any ideas you guys might have off me!

Thanks for everything!!!

Roberta
email me at wolfsprg@zianet.com (wolfsprg@zianet.com)

In Passing: Those We Must Remember

From mentorsfriend@opman.com (Barbara Fisher)

dated 2-21-99

THANK YOU FOR SENDING ME THE RIBBON. . .I SAVE IT ALL AND SOMEDAY I HOPE IT WILL HELP ME WITH A BOOK I AM WRITING. LAST WEEK I MY MOM NORMA GOOD, (AGE 76) WHO HAS HAD ALZHEIMERS FOR FIVE YEARS, DIED, AND IT HAS ME TORN TO PIECES. . .I AM HAPPY THAT HER TORMENT AND PAIN ARE OVER, BUT FEEL CHEATED FOR THE LAST FIVE YEARS THAT MY MOTHER WAS HERE BUT NOT HERE. SHE WAS THE MOST BEAUTIUFL CARING LADY. . AND I WILL ALWAYS MISS HER.

ON THE SAME FLOOR IN THE SAME NURSING HOME WHERE MOM DIED LAST WEEK IS MY FATHER, WHO HAS ALZHEIMERS,TOO. DAD ALSO HAD A STROKE AND FOR THE LAST THREE YEARS HE HAS BEEN PARALIZED FROM THE NECK DOWN. . .A HELL IN ITSELF. .

ON THE FLOOR BELOW IS MY FATHER IN LAW.. HE IS MENTALLY OK, BUT 86 AND CAN HARDLY GET AROUND ANY MORE AND IS TOO MUCH FOR MY MOTHER IN LAW TO HANDLE AT HOME. . .

I HAVE MS AND LUPUS AND HAVE A LOT OF TROUBLES BUT THE WORST WAS WATCHNG MOM WITH ALZHEIMERS. . .I KNOW SHE IS IN HEAVEN NOW, AND I KNOW SHE HAS AT LAST FOUND PEACE. . .

I HAVE A NOVEL COMING OUT NEXT MONTH. STOLEN MOMENTS, AND I BURRIED A COPY WITH MOM, SO SHE AND GOD CAN READ IT TOGETHER. . IT IS A BEUTIFUL ROMANTIC NOVEL, AND I WROTE A NOTE AND TOLD GOD TO READ IT WITH MOM . . .CRAZY BUT IT MADE ME FEEL BETTER.
THANKS FOR YOUR NICE PAPER. .THANKS FOR EVERYTHING. . TAKE CARE AND GOD BLESS YOU. BARBARA FISHER

From LadyPoet2@aol.com (LadyPoet2)

Dated 3-4-99

Could you please take me off the list for now? My dad has passed away and I just really need a break.

Thanks for everything!!

Links

From PHOTOLJT@aol.com (Linda)

Just a quick thought. In helping one of the new folks last night I compiled a list of links for him. The link I had for the Alzheimer's Association did not work and had a hard time in trying to find it...finally did a net search. What I am getting at is how about including either on the website or in each newsletter the below list of sites? Just an idea. Everything is an accurate sight as of last night!

Take care!
Linda

Alzheimer's Association - Chapter Index(Link: http://www.alz.org/chapters/index.htm )
Alzheimer's Association - Organization Site(Link: http://www.alz.org/us/index.htm )
Alzheimer Web Home Page(Link: http://werple.mira.net.au/~dhs/ad.html ) (This is something different)
Virtual Law Office - Alzheimer's(Link: http://www.virtuallawoffice.com/brennan2.html )
Administration on Aging - Information(Link: http://www.aoa.dhhs.gov/ )
Partners Program of Excellence in Alzheimer's(Link: http://neuro-oas.mgh.harvard.edu/alzheimers/ )
Mediconsult.com: Alzheimer's Disease(Link: http://www.mediconsult.com/alzheimers/ )
Social Security Online(Link: http://www.ssa.gov/ )
Department of Veterans Affairs(Link: http://www.va.gov/ )
The Gerontological Society of America - Homepage(Link: http://www.geron.org/ )
U.S. Department of Health and Human Resources Home Page(Link: http://www.os.dhhs.gov/ )
SeniorLaw Home Page(Link: http://www.seniorlaw.com/ )
Elder Law Practice of Timothy L. Takacs(Link: http://www.tn-elderlaw.com/ )
Welcome to The Ribbon Online(Link: http://www.theribbon.com/ )

Tuesday nights starting at 8:00 p.m. EST in Positive Reflections first, then we move to this room: Personal Empowerment.

Friday nights we are going to a new room called Health Conference and that starts at 9:00 p.m. EST.

And then as if we don't get enough on both Tuesday and Friday, we go to CSG. We go here and let our hair down and try to relax. It is generally all of the regular folks and the chat moves a little slower in here.

From LIZA 513@aol.com (Liza)

Repeated Falls In The Elderly Could Be Prevented Through In-Hospital Assessment(Link: http://www.pslgroup.com/dg/da4d6.htm )
Exelon Effective For Mild To Moderate Alzheimer's(Link: http://www.pslgroup.com/dg/eab16.htm )
Memantine Effective For Patients With Severe Dementia(Link: http://www.pslgroup.com/dg/ea80a.htm )

From BHostSTS@aol.com (BHostSTS)

The Elder CareGuide on Better Health

From MeeMawMoe@aol.com (MeeMawMoe)

ABCNEWS.com : Building a Buff Brain(Link: http://abcnews.go.com/sections/living/InYourHead/a llinyourhead.html )

Medical News

From LIZA 513@aol.com (Liza)

Proper Dementia Diagnosis May Help Assure Patients Receive Appropriate Treatment

CHICAGO, IL -- March 15, 1999 -- People with mild cognitive impairment (MCI) can be differentiated from those with very mild Alzheimer disease (AD) and from healthy control subjects, according to an article in this month's issue of the Archives of Neurology.

The researchers compared three groups of subjects, 106 patients with mild AD, 76 patients with MCI and 234 healthy control subjects, to quantitatively characterise and describe the clinical course of patients diagnosed as having MCI.

The researchers found that the patients with MCI are at increased risk of progressing to AD.

"They appear to constitute a clinical entity that can be characterised for treatment interventions," the authors write.

They also report that the patients with MCI can be differentiated from the control group in the area of memory but not cognitive functions. When the patients with MCI were compared with those with mild AD, their memory performance was similar but the mild AD patients were more impaired in other cognitive domains as well. Over time, the MCI group declined at a rate greater than that of the controls while those with mild AD declined more rapidly than the patients with MCI.

According to the authors, a great deal of interest has been generated over the clinical identification of the boundary or transitional state between normal aging and dementia, or more specifically, AD. Several studies have indicated that these transitional patients with MCI are at increased risk for developing AD ranging from 10 percent to 12 percent per year. Patients with MCI are entering treatment trials. Some investigators note that while many MCI patients progress to AD, not all do. Consequently, the distinction is important.

Related Link: Mild Cognitive Impairment - Clinical Characterization and Outcome(Link: http://archneur.ama-assn.org/cgi/content/abstract/ 56/3/303 ) [Abstract Mar Arch Neurol. 1999;56:303-308] (c) AMA 1999

E-Mail Box

From NOGYCLARKE@aol.com (NOGYCLARKE)

Hi: Thanks so much for my first copy of the Ribbon. Communication Problems were what I needed help on today. I thank you so much. My husband of 82 is in that mode and I really thank you. NOGYCLARKE

From JRNYWMN@aol.com (Ann)

Wow! You two really timed it right for me...this last week has been solid angst! not to mention little sleep. Mom (Louise) has had a serious decline all in the period of 5-7 days. We were getting used to her losing words and suffering the subsequent frustration; we were getting used to using panty liners; we were even accepting the occasional bathroom "accident". But in the last week, she's gone into a great depression; even the women at the daycare are concerned. I know, having known Mom for a few :) years, that it's because she embarrassed over the bathroom situation. She has had more and more "accidents" at daycare (what she calls "school") and requires help at home. We've put her on a 2-hour schedule (max.) when she's home, and "school" knows she needs the help, but she's too embarrassed to ask/doesn't want to "put them out".

I figured out what's missing in all these stories from people, because I've had to pay close attention to Mom's words and actions...the individual's HISTORY. Sure, we all experience many of the same physical things that happen, but it's THAT person's habits/peculiar interests/training/education that modify the "basic" stuff. That's what makes it difficult for Janalee (Mom's caregiver and my partner) to truly interpret Mom's meanings many times. And it is all of that that makes it difficult for me to turn Mom over to an Alzheimer's home; I KNOW her, they don't. Which brings me to the next point...

The last Ribbon brought up compensation for caregiving. It's truly a REAL subject and one that brings a lot of distress to me because of the strife between my siblings. I KNOW Mom and want to be at home with her; but because of the past problems with one brother in particular, I fear even broaching the subject with him. Truth is, though, I was encouraged by reading The Ribbon. I haven't covered all the bases in the legal area, though I thought I had, and my time is running out for Mom being able to participate at an attorney's office. [Thanks to LP (Linda) for her input.]

It's funny that you think you've got it under control, but things change, Mom's changing rapidly. I appreciate The Ribbon and all the contributors.

Signed,
"Knocked Up-Side the Head" Ann

P.S. I know I won't be able to have Mom here at home a great deal longer, simply because of the growing demands as the disease progresses; but I don't want to lose the time she's "still" here. Guess I'll know when the time is right?

From sundance1@centuryinter.net (sundance1@centuryinter.net)

I just had to write in response to the letter from rootsflo in the last issue regarding the horrific treatment of her mother-in-law at a nursing facility. I have worked in long term care for 19 years, the last 9 specializing in alzheimers, and am manager on the advanced unit. I find what you described to be not only atrocious, but antiquated and would have removed any loved one from such a situation like, yesterday. Please believe that there are many, many fine facilities out there for your loved ones, and that most of the time, they become our loved ones and extended family too. We laugh, cry, love and hurt right along with you. If you find your facility is not meeting the needs of you and your loved one, PLEASE do not hesitate to move them, and I highly recommend contacting the state ombudsman for any assisstance to solve or investigate any complaints. A lot of us do care, very much. thank you for letting me respond. lots of love to all who live with this very challenging disease in their families.

From CM41620@aol.com (Cari)

Wow, again, I can't even respond ... again, it's nice to know I'm not alone in this fight, my Grandmother who lives with us fits all the severe lists and I also fight with doctors who respond to all her problems with 'well ... she IS 85, ya know.' When she broke her wrist and then two weeks later took her cast off (by secretly pulling out the cotton and stuffing it in her chair until she was able to slip the cast off) they finally believed me when I told them it needed to be 'pick' proof. I can only imagine what she'll do if we're ever hooked up to tubes. I also, had to take away her fine jewelry because I kept finding it in the garbage cans, which I found funny because I never found GARBAGE in them! I love all of you, when people tell me I'm 'amazing' for taking her in I say 'no,' but when I read what you all go through I think "wow, you are amazing"... I must be also. God Bless You. CARI - 29, wife, mother of 2, granddaughter/caregiver

From SSabel2884@aol.com (Shannon)

Dee and Mary, from what I gather, both need to consult with an elder law attorney. In many states (NY? I don't know), rental property has certain dispensations. If not, the best thing may be to sell it and use the money to fund his care until it runs out, in which case, Medicaid becomes available. Doesn't help your inheritance, but will get your father care, which I assume is your priority.
Shannon

From Lndmark191@aol.com (Teena)

Jamie and Karen: I don't think I have ever really told you how proud I am to know and be friends with the both of you. My Dad is 84 and has been diagnosed with alz/dementia for about 4yrs. His biggest problem is his memory and repetitive questioning of things. I find the ribbon so helpful. If and when my father's time in A/z worsens, I will be more knowledgeable on this disease. Please keep me on the mailing list. My hat goes off to the both of you for the dedication, commitment and support you give for all of us. God Bless and Love you both. Love always,Teena (lndmark191)

Responses to "Memories of Alzjane198"

Read the Special Issue of The Ribbon: Memories of Alzjane198(Link: http://www.theribbon.com/articles/memoriesofjane.p hp )

From Gates85@aol.com (Teena)

just got in from work and thought i would see if the Ribbon was in my box before i started workin again. not sure i'll get much done now. but just wanted to think you. know it had to be hard to do. (((((((((((Jamie))))))))))((((((((((Karen)))))))))
thanks - teen

From JACKSANA@aol.com (JACKSANA)

thank you

From Phydeau@aol.com (Beverley Dorman)

Karen, this issue of The Ribbon is a beautiful tribute to Jane. She truly was a caregiver to the caregivers, and we will miss her and will remember the special way she was there for each of us. Thank you for dedicating this issue to her. Beverley Dorman, Phydeau@aol.com

From Shari N CC@aol.com (Shari)

I am so sorry to here about "Alzjane"...I have talked to her many times and found her to be so helpful to me ..A sweet lady to be on this earth ...I give my regards to all of her family ..I am going to miss her in the meetings so much ..Your truly. Shari NCC@aol.com

From DSkolimows@aol.com (DSkolimows)

What is there to say? I never met her but have known few people who have been as supportive as she has been to all of you. Do you realize she was so giving in order to forget her problems and forgive herself for anything she may felt guilty about?

God is holding her gently to His bosom and saying, see, they are why you are here. Welcome and now lets pray for all you left behind.

A newbie, Dolores. My mom is away with Alz. My sister is overseeing her care in a nh, and occasionally we keep in touch.

I am not able to be with them physically, but pray for them and all people with and associated with Alz. God Bless You.

From Chilo10@aol.com (Pat)

thanks for the beautiful mail on JANE. i never knew her as i am knew to the chat but from what i read about her she was a very special person. i know she will be greatly missed.
thanks,
pat

From KG2@aol.com (KG2)

I Did not know Alzjane198, but your thoughts of her passing gave me a little look on what she was like.WilloRain, your poem was very touching as all your poems are because you are a very caring person, as with the others, I am sure they are too.
Thank You for sharing the newsletter with me. :-)

You are all truely amazing in my eyes, and my heart goes out to all, patient and caregivers alike.

Bless you,
KG2

From Piano kf@aol.com (Piano kf)

THANK YOU SO MUCH FOR THE GREAT NEWSLETTER IN HONOR OF OUR JANE------We will never forget her---her spirit shall live on---in our hearts and in "cyber space"---WE MISS YOU JANE!!!!!!!!!!!!! piano kf

From FuturAngel@aol.com (Lynda)

I am so very sorry that I never had the opportunity to be blessed with her guidance. I recently stumbled into this chat room while trying to locate my LUPUS Support Group Chat Room. It was so strange because my "Mum"-in-law, we are very sure, has it. Her father passed away from it several years ago and we had been trying to find someone to help us find a way to help her.

I know deep in my heart "Alzjane198" would have been there for me as she was for all other caregivers. I am sure you are feeling such sorrow with the loss of her but always remember she will be perched on a cloud watching over us all as an "Angel In Heaven"

God Bless . . .
FuturAngel (Lynda)

From DWalker268@aol.com (Debbie)

Dear Karen: I am sorry to hear about your loss. My prayers go with you and all the people who knew her. I know what its like to lose a loved one, especially a parent. May God Bless You And Keep You, IN The Palm OF HIS Hand. I'm here for all of you. Sincerely, Debbie. Pass this on!

From Csober@aol.com (Csober)

HOW CAN I ADD ANYMORE WORDS THAN TO WHAT HAS ALREADY BEEN SAID ABOUT JANE ... WITHOUT HER THE WORLD WILL BE LONELY BUT THE HEAVENS ABOVE HAVE AQUIRED AN ANGEL THAT WILL FILL AND HAS FILLED ALL OUR SPIRITS.. THANK YOU JANE NO WORDS CAN SAY ENOUGH.

CSOBER

From Currby4@aol.com (Laura)

this edition was so special. i do not make it to your chats but await anxiously for the newsletter to arrive in my email. after reading all your tributes to alzjane i can tell you i missed out on meeting a wonderful person. to have touched so many lives as she did was truly amazing......i would only hope for tributes like you all have given her.

saddened at her passing, saddened more that i never got to meet her.

sincerely, laura

From NMHaver@aol.com (NMHaver)

I didn't get a chance to know her very well, but she was on my buddylist because we chatted a few times during the course of my divorce, and she offered some support to me, and my mom has Alzheimers, too. I was shocked to hear that she had passed away -- we don't usually hear of anyone passing through our network of friends over the internet. I'm so sorry she lost her life so early, and that her soulmate is left without her after so many years they shared. It's so tragic. My prayers are with her and her family that they will learn to cope with this loss. I wish we didn't have to lose those we love.

From Bean2591@aol.com (Shellie)

Thank you for a beautiful newsletter. I know it was difficult to put together but it is very much appreciated. I, too, think of her and am sorry of her passing. I know she will always be remembered.

shellie aka bean2591

From Bainshee1@aol.com (Bainshee1)

You put together a beautiful tribute to Alzjane198. Just wanted to let you know how touched I was . and another thank you to KMenges to see that it was sent out.

From CKnox0911@aol.com (CKnox0911)

I wanted to take this opportunity to thank you for your hard work on the special edition of The Ribbon you did for Jane.

From Pershu@aol.com (Kathy)

This was a beautiful tribute to Jane. I wish I had known her better.

Kathy

From JBrown8004@aol.com (JBrown8004)

I'm so sorry to hear of the sudden loss of Jane. However, i will remember her family in my prayers. May God Bless each and every one of you... Peace to you all.

Just when you think no one is listening....

From Lndmark191@aol.com (Teena)

Having been an advocate for Alzheimer's awareness for almost 6 years now, I have taken it upon myself to make every effort to push our cause, for research, for a cure, for help, to just about anyone who will listen. So, about a month ago, when someone sent me an article about a speech Hillary Clinton gave about the pending tax credit for caregivers, I immediately went to the White House web site and sent the First Lady an e-mail. It infuriated me that this tax credit, which will be $1,000 a year, is being taoted as such a wonderful thing, financially, for caregivers. As most of you know, that pathetic amount won't get you through a month in Personal Care Facility or Nursing Home, pay for Depends for a year, or give a caregiver the funds necessary to have respite care help for a year. And I let Hillary know that. I sited the average costs of care for an AD patient, averaging $47,000 annually. I told her of the difficulty in finding financing for a care facility when the AD patient can no longer live alone and the rest of the family has to work, of the guilt, the pain and the financial burden this horrific disease inflicts on us all, as family of AD patients.

I didn't know, when I sent the e-mail, if Mrs. Clinton would ever see it, but I felt better letting her know the reality or at least as much as I could in the small space provided.

So imagine my surprise, a few days ago, when I got a phone call from the local Agency on the Aging. Seems they got a letter from Washington, and were following up....surprise, surprise!

I tell you this so you realize, as I now do, that it is very important to keep after all the agencies, and people in high places and anyone else who may help. Let your state Representatives and Senators know what you are going through. Send e-mails and snail mail....don't let up. Our loved ones can't ask for help, it is up to us to do it for them.

From Kmenges581@aol.com (Karen Menges)

Karen and I say "Thanks Guys!!!" Job well done. Remember, without you there is no newsletter.

Hugs and Peace,

Karen (KMenges581@aol.com (KMenges581@aol.com))
and
Jamie (DRMOM1955@aol.com (DRMOM1955@aol.com))