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The Ribbon - Care for Caregivers
ISSUE 10

As some of you may know already, my partner, DrMom1955, otherwise known as Jamie, has had a family crisis and has been spending all of her waking hours at the hospital with her Grandfather. In her absence I will attempt to present this week, an abbreviated version of our newsletter. I ask for your continued support and prayers for Jamie and her family and patience for my attempt. :) Karen


Bell of WV :

MOTHER WAS JUST PUT ON AIROCEP(SP)..TODAY. I REMEMBER YOU ALL TALKING ABOUT IT IN SUPPORT GROUP AND WONDERED IF YOU COULD GIVE ME YOUR VIEWS ON IT. SHE IS IN N/REHAB CENTER AND MAY STAY IN LONG TERM. SHE FELL AND INJURED HER BACK, BUT IS SO MUCH BETTER AS FAR AS HER BACK IS CONCERNED, BUT HAS REGRESSED IN OTHER WAYS. SHE HAS STARTED HALLUCINATING AND SEEMS VERY DEPRESSED AND HAS LOST ALL OF HER ABILITIES TO FEED HERSELF, ETC. SHE HAS BEEN ON XANAX AND ZOLOFT AND HE ADDED THIS TODAY. I'M WONDERING ABOUT THE SIDE EFFECTS. I SHOULD HAVE GONE INTO DETAIL WITH HIM, BUT TOOK HIM AT HIS WORD, THAT HE THOUGHT SHE NEEDED TO TRY IT. ANY INFO. YOU COULD GIVE ME WOULD BE APPRECIATED.


From Mary Max 12:

I think your newsletter is wonderful. Having just gotten back online a short while ago and back to the Alzheimer's support group on Friday night, I am so pleased to see that you are keeping us posted on what is going on. Is there anyway possible I can get the first 8 issues of The Ribbon E-mailed to me. I would like to print them out for friends of mine who are not online, but in the same "boat." As I told you in yesterdays session, a friend E-mailed an article to me from the Dow Jones News Service on a new drug being tested by Neotherapeutics, Inc. for Alzheimer's. It is called AIT-082. The article sounded very promising. It stated that there were memory and behavioral improvements with just one dose and people who didn't speak are now talking. It is supposed to stimulate genes in brain cells to produce proteins which help regenerate neurons. The other Alzheimer drugs provide patients with proteins which improve the performance of neurotransmitters but which do nothing for the dead neurons. If anyone out there knows of this drug or anyone that may be involved in the study, it would be great to hear from them. By the time this drug is on the market (soon I hope) I think it may be too late for my Mother, but you never know. We can only pray and hope for the best for our loved ones. Editor's Note: NeoTherapeutics Technology This hyperlink will give you more information on AIT-082.


From STS

Surgery and Memory

May 16, 1998 One in 10 older people have problems with memory and concentration for at least three months after surgery, a new study shows. Researchers from around the globe studied 1,200 people aged 60 and older, all scheduled for major surgery that would require general anesthesia, and found that one week after surgery, nearly 26 percent exhibited cognitive problems such as confusion, memory loss, and trouble concentrating. Three months later, 10 percent of volunteers still reported such problems. Although researchers point to the lingering effects of drugs used during surgery as the cause of immediate cognitive problems, they are less clear why some people continue to experience problems even months later. Experts recommend that when older adults undergo surgery, they should ask their doctor about the possibility of using a local anesthetic. If that's not possible, then caregivers might want to make back-up arrangements just in case the person heading for the operating room feels disorientated in the months to follow. Source: HealthNews 4.20.98


This article was sent to us by BHostSTS a while ago. It appeared in the Orlando Sentinel and was written by Ellen Goodman, Washington Post Writers Group.

REAGAN'S ALZHEIMER'S - THE LOSS HITS US ALL

There are times when words really do fail us. We don't always have the vocabulary - the nouns, the adjectives, the adverbs - to describe properly the range of experience. This time it was the verbs that came up as paupers. The simplest verbs in our language -"was " and "is" - were inadequate for the task facing the friends and family of Ronald Reagan, the president now crippled with Alzheimer's. In the masterful documentary on PBS, the tenses kept shifting, slipping out of gear. Some said, "He was..." Others said, "He is..." At times, the past and the present got confused, as if the speaker could not decide whether the Ronald Reagan he knew still existed. In descriptions of Reagan's character as well as his policies, the tense would alternate like an electrical current. This language became the poignant - no, tragic - background to the memoir of a man who no longer remembers. To the story of a president who can no longer be a source of information about his own presidency. To the completed history of a man who is still alive. If these people were tongue-tied, it was because there was/is no correct tense to describe the existence of a person with advanced Alzheimer's. This is a disease that attacks the brain's hard drive like a computer virus, erasing the personality byte by byte. It leaves behind a man who is no longer himself. No longer who he was. This was not the first time I had been struck by such sounds. Two winters ago, I was in California when a star-studded celebration was held for Reagan's 85th birthday. I was at a party arranged for a man who was not there. And was not at all there. As the awkward, even bizarre televised festivities went on, I was struck by how hard it was for the celebrants, for any of us, to come to grips with a disease that alters identity. Had the Ronald Reagan they were toasting really turned 85? Or had he never truly gotten beyond 83, the year he told us he had Alzheimer's? What is the meaning of identity in people who outlive their conscious life? These are questions that plague those who live in the aura of Alzheimer's. There are about 4 million Americans with this dementia, among them a mother of a friend and a friend of my mother. Last week, while researchers in Boston talked of a new generation of drugs, another public man, Abe Ribicoff, the former governor and senator from Connecticut, died with the disease. But Ronald Reagan is the first of our presidents, the first man to engage the entire country in what families of the afflicted describe as "the long good-bye." Today he lives a private and protected life at some point on the sliding scale of the disease. Every time the ex-presidents meet, one is absent. And at every absence there is again the reminder of his presence, not as some Alzheimer's poster boy but as a shadow; the man who was/is. As national family members we only wince. It's the family and friends who truly suffer through this disappearing act. These are the people left facing and caring for a stranger in familiar shape. Today, Patti finds ease in the fact that she reconciled with her father while he still understood. Ron Jr. takes honest if chilly comfort in the fact that they were already prepped in his father's remoteness: "All of us went through some period of our lives when we missed him when he was there." But both let us understand that their father is no longer available. Dr. Steven DeKosky, director of the Alzheimer's Disease Research Center at the University of Pittsburgh, said that people who deal with Alzheimer's often talk of two selves: the then-self and the now-self. When families and doctors must make decisions about living wills or experimental treatment, they ask what the woman she was would want of the woman she is. Yet we have known about this disease for only 20 years. As DeKosky said, "We can talk about people who have cancer, strokes, heart attacks, amputations but this is wholly new. We haven't yet learned how you talk about the loss of self." More than three years ago, Ronald Reagan wrote the country a brave and fond farewell letter: "I now begin the journey that will lead me into the sunset of my life." In the long shadows of this sunset, we have inherited the deeply sad obligation to understand what was/is. Reagan's farewell was just the beginning of our long good-bye.


In Passing
Republican Icon Barry Goldwater Dead at 89
By JERRY NACHTIGAL .c The Associated Press PHOENIX (May 29) -
Barry Goldwater, the sharp-tongued, uncompromising defender of conservatism whose fierce but futile campaign for the presidency in 1964 began the philosophical reshaping of the Republican Party, died today at age 89. His family released a statement saying Goldwater died at his home in suburban Paradise Valley of natural causes. "He was in his own bed, in his own room, as he wished, overlooking the valley he loved with family at his side," the statement said. "He died as he lived: with dignity, courage and humility." "He is soaring," KTAR Radio quoted Goldwater's wife, Susan, as saying. Goldwater suffered a stroke in 1996 that damaged the frontal lobe of his brain, which controls memory and personality. In September 1997, his family said Goldwater was in the early stages of Alzheimer's disease. In recent months, he made no public appearances.


I would like to take this opportunity to remind everyone that The Ribbon is your newsletter. It's made up of things contributed by all of you, a sharing of your thoughts, feelings and fears as well as information. As the spring wanes and summer approaches, please remember that the struggle we all face knows no season and the need for this support is a daily one. Keeping you all in our hearts and prayers.

Karen & Jamie

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