The Ribbon - Care for Caregivers
Issue 8

There have been a few articles relating to Alzheimer's in magazines and newspapers lately. A few may be worth your while to try with your loved one. We are including them since they cost you nothing but a bit of your time and may help your loved one.


Medical News

Alzheimer's patients find rocking relief Rochester, NY (AP) At Kirkhaven nursing home, 70-year-old Mary Hall relaxes for long periods in a rocking chair, the agitation caused by her Alzheimer's disease soothed away as she rocks. "When she's sitting in that chair, she's usually got a little smile on her face. She's happy," said the retired school librarian's son, Douglas. "Before, she'd be prone in her bed all the time, making moaning noises." A two-year study at Kirkhaven found that rocking not only brings some peace of mind to elderly people with dementia but also turns out to be good medicine. The repetitive movement appears to ease anxiety and lift depression, the study found. And daily rocking can improve balance and lessen the need for pain medication, said Nancy Watson, a geriatric nursing researcher at the University of Rochester who led the study. "You could see immediately by their faces that they were enjoying themselves," she said. "That in itself has really great value for this population where a lot of their experience of the quality of life is what's in the moment." And the benefits seem to be cumulative. "The more they rocked, the better they felt," Watson said. More than half of the 1.6 million people in nursing homes in the United States suffer dementia. Watson speculated that prolonged rocking releases pain-relieving chemicals in the brain called endorphins. Other studies have associated endorphin release with periodic rhythmic exercise.


From STSWILLIE

Exercise Protects Against Alzheimer's April 29, 1998 NEW YORK (Reuters Health) -- Regular strenuous exercise throughout life appears to protect against the development of Alzheimer's disease, a neurologist at Case Western Reserve University reported Tuesday at the 50th annual meeting of the American Academy of Neurology, which is underway in Minneapolis, Minnesota. Elderly persons who reported regularly engaging in activities such as running, tennis, racquetball, weight training, ice skating, golf, swimming or biking in their younger years had a lower risk of the disease than their sedentary counterparts, Dr. Robert Friedland reported. Friedland and colleague Dr. Arthur L. Smith studied the exercise patterns between ages 20 and 59 in 126 elderly patients with Alzheimer's, and compared these to activity levels between the same ages in a group of 315 healthy older adults. The mean age of the two groups at the time of the study was 77. The researchers obtained their data from a questionnaire given to the Alzheimer's patients (or their family members) and to the healthy adults. The study results show that the Alzheimer's patients had a much lower score on an activity rating scale than the group of healthy older adults. "The healthy individuals reported significantly more physical activity over the four decades then those with Alzheimer's disease," said Smith, a clinical research fellow at the University Hospitals of Cleveland/Case Western Reserve University in Cleveland, Ohio, in a statement. "The results suggest that lifelong regular exercise may be protective against the development of Alzheimer's disease." "The difference persists even after we correct for age, gender and level of education," Friedland reports. Friedland pointed out that he and others have previously shown that intellectually demanding occupations, higher levels of education, and high levels of social activity are also protective against Alzheimer's disease. "We believe that the brain is just like all the other organs in the body -- that it ages better when it is used," Friedland said. "Alzheimer's disease affects about 4 million people in this country and it is the most common cause of dementia in the United States and Europe. The number of individuals affected by Alzheimer's will likely double by the year 2030," said Smith. Copyright 1995-1998 Reuters Ltd. All rights reserved. Republication or redistribution of Reuters content is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.


Pro and Con on Feeding Tubes- Your Comments

From Pmsdyny

My husband was diagnosed with A.D. in 1988, and died in 1995 at the age of 65. I know he was being affected by the disease long before 1988. We had been married for 42 years, had both written living wills, become one another's health care proxy's, and discussed what we would, and would not want, if we became ill. Feeding tubes were one of the things we agreed we would never want to use if it became just a matter of keeping us alive. Don was an engineer, a fine athelete, and was in superb physical condition before A.D. struck. What terrible things the disease does to a person physically, mentally, and emotionally. He was in diapers for over a year and a half. During the last six months his balance was terrible and he would often fall when he tried to walk, and not be able to get up. In the last months, he began to eat less and less. When he developed pneumonia and began to refuse food altogether, I knew what he would want ... knew that I needed to let him go. I stayed with him almost 24 hours a day for 16 days in the N.H. to make sure that no one used any kind of forced feeding, oxygen, or antibiotics. He died very peacefully as I sat by his side telling him it was okay to go ... Such decisions are so very personal, and ones that each of us must make in our own way, and in whatever way with which we feel comfortable. Just as is the decision of whether or not to use a facility of some kind. It doesn't seem to me that there are "right" or "wrong" ways. It is a tough thing to walk alongside a loved one as he or she disintegrates under our noses, and it seems so important to not feel as though we have to do any of these things one certain way, or the way anyone else does it, or the way anyone else thinks it should be done. With love and respect to all caregivers. Pat


From Momi1knobi

One of mother's greatest joys is being able to eat what she wants, when she wants & the way she wants. We have discussed IV's and her not being able to eat on her own. She has decided that if she cannot eat normally, she does not want to be kept alive just to exist. It is good that she is able to help make these decisions now so that I can just abide by her wishes. We have a man next door with cancer & we hear about the feeding tube. Once it's started, it would be hard to just stop. I am thankful that Mom agreed to move in with us while she still had choices. She is very happy here and will remain until the end. She is 80 and still gets around pretty good. Of course over the past 3 years we have seen her mind and abilities diminish, but the sparkle is still in her eye, she gets alert by doing crossword puzzles, watching Jeopardy and making the effort to get out around people every day. I am thankful for the extra happy years she has had and will abide by the decisions she makes. Margaret


From FLYINGFGRS

First and foremost I would like to give ya'll a big old TX THANK YOU for the wonderful newsletter....It is very informative and most helpful....I know that many hours go into its preparation and I wanted you both to know that your hard work is appreciated.... Now on the issue of tube feeding....I that if it is at all possibel you need to ascertain what your LO wants done....talk about it while you still can...if he/she is beyond that point where he/she can tell you then you have to make an educated decision...do the resaerch on exactly what tube feeedings are how they are administered..etc..All family members need to be as involved in the decision as possible...If you are the sole caregiver and have no input from other family members then you need to make the decision based on what you feel that your LO would want... In my particular case we are no where near the point of having to decide but I KNOW what my decision will be..NO TUBE FEEDING...the rationale behind this is that I do not feel that mom would want to just "exist"...tube feedings only delay the inevitable and just because "modern science" can prolong life...what quality of life does it prolong....NONE...we happen to live in a country that can and does prolong life long beyond the true "life" of a person...WHY????? what is to be gained...the LO suffers the family suffers and there is no hope of recovery from this awful disease...if there were one shred of hope fro a recovery then maybe I would feel differently,,,but at this time there is NONE so why prolong the suffering....Let them go peacefully into the long rest....they have suffered enough! P.S. my one concern, no my one DEMAND, would be that my LO be kept "comfortable" and pain free by whatever measures necessary...why add to the suffering?


From SewingBabe

You asked for opinions on g-tubes and this one is mine. I have mixed feelings on g-tubes. For some people it can be a big help until they get to a point of not needing them and getting healthier. But for those who will never get healthy again, I am against placement of a g-tube or a j-tube. the person who is getting it will not understand what is happeneing and it might be frightening to them to have this tube in them. I have known people to pull out catheters so I would not be surprised if g-tubes have been pulled out by a confused patient. Also studies have shown that a person (with Alzheimer's) will lose the same amount of weight with or without tube feeding. In feeding a person with a tube I have to ask (and I would ask this of myself if it were my own family) whose best interests are we serving here anyway, mine (in order to say good bye) or theirs.


Medical News

From STSWILLIE via BH AChambs

Scientists probe link between diet and Alzheimer's 7:48 a.m. ET (1148 GMT) April 26, 1998 LONDON, April 26 -- Scientists will unveil research this week that suggests a simple change in diet could protect millions of people from Alzheimer's disease, British newspapers reported on Sunday. The reports said the international team believes a simple supplement of folic acid -- which is found in many green vegetables and can be taken as a vitamin tablet -- could shelter potential sufferers against the debilitating disease, the main cause of senile dementia. "It is a very promising finding," the Sunday Telegraph quoted one of the research team, Professor Helga Refsum of Norway's Bergen University, as saying. "We need something to go for, and the idea of reducing the risk of Alzheimer's disease by diet is a promising hypothesis." Refsum stressed that the results had so far only revealed an association, not a direct cause and effect, and pointed out that many older people suffer from conditions that can be exacerbated by taking folic acid. The research is to be unveiled at an international scientific conference in the Netherlands this week. The newspapers said the study of hundreds of British patients revealed a link between Alzheimer's and high levels of a chemical produced by the body that is known to be affected by diet. The discovery, made by an international team co-ordinated at Oxford University, opens the way to a simple blood test for identifying those most at risk. It also raises the possibility of avoiding the disease altogether by cutting levels of a compound known as homocysteine. This could be brought about by increasing a patient's intake of folic acid. The disease affects 500,000 people in Britain and causes progressive memory loss. It is the fourth commonest cause of death in the Western world. "If the interpretation being placed on these results is correct, it is potentially dynamite," the Sunday Times quoted one senior scientist as saying. REUTERS


From LPNYFLGANY

Alzheimer's Diagnostic Markers Reviewed by Reagan Research Institute & NIA Working Group on Biochemical Markers of Alzheimer's Disease WORCESTER, Mass., April 9 /PRNewswire/ -- Athena Diagnostics, Inc., a wholly owned subsidiary of Athena Neurosciences, Inc., welcomed the announcement by the Alzheimer's Association's Reagan Research Institute and the National Institute of Aging that new guidelines for assessing early diagnostic markers of Alzheimer's Disease (AD) have been established. The new criteria are contained in "Consensus Report of the Working Group on: 'Molecular and Biochemical Markers of Alzheimer's Disease'," appearing in the April 1998 issue of the journal, Neurobiology of Aging. The paper puts forth a standard for judging claims of current and future diagnostic markers of AD. The recommendations were developed by leading researchers in the field of AD. Diagnostic markers are important aids in the detection of AD, particularly early in the disease. In the United States, an estimated four million people suffer from this debilitating disease, and an additional half million become afflicted each year. The article's review of the current proposed markers includes those tested for by Athena's three testing services for the disease: the ADmark(R) ApoE Genotyping Analysis and Interpretation, PS-1 Analysis and Interpretation, and Tau/AB42 CSF Analysis and Interpretation. The working group recommended that ApoE genotyping is appropriate as an adjunct to diagnose Alzheimer's in people whose clinical evaluation suggests AD. Genotyping can add confidence to the clinical diagnosis, particularly early in the disease when diagnostic accuracy is otherwise least secure. This type of testing is available as the ADmark ApoE Genotyping Analysis and Interpretation. The working group also found that the use of markers for autosomal dominant mutations on the PS-1, PS-2 and APP genes is appropriate in cases of early-onset familial AD, when patients have a family history of early-onset Alzheimer's. Athena's ADmark PS-1 Analysis and Interpretation detects mutations on the PS-1 gene. None of the other potential markers for Alzheimer's disease have achieved universal acceptance; however, the working group indicated that examining levels of tau protein and amyloid-beta 42 in cerebrospinal fluid came closest to meeting the criteria for a useful biomarker. The ADmark Tau/AB42 CSF Analysis and Interpretation tests for these biomarkers. Robert Flaherty, President & CEO of Athena Diagnostics, commented, "We are pleased to see this validation of our testing services. We are in a position to help patients receive an earlier and more accurate diagnosis than was previously possible. This is of critical importance to the clinical management of patients and improves patient outcomes by permitting physicians to prescribe medication earlier in the disease process, and enabling those with the disease to take a more active role in planning for the future." Alzheimer's disease is the leading cause of dementia. In the United States, it has been estimated that 10% of the people over 65 years old and nearly half of those over 85 years old have AD. The ADmark testing services are available exclusively from Athena Diagnostics, Inc. of Worcester, MA. Results are reported to physicians within two weeks. Physicians or families interested in additional information on these services can call 1-800-394-4493. The working group and preparation of the paper were sponsored in part by an unrestricted grant to the Alzheimer's Association from Athena Neurosciences, Inc. SOURCE Athena Diagnostics, Inc. CO: Athena Diagnostics, Inc.; Athena Neurosciences, Inc. ST: Massachusetts IN: MTC HEA


From KMenges581

Test Detects Alzheimer's A simple, seven-minute memory checkup has 90% accuracy rate; more studies needed The Associated Press WASHINGTON - A new seven-minute work-and-picture test is 90 percent accurate in identifying patients with early Alzheimer's the memory robbing disease that often is difficult to diagnose, researchers reported yesterday. Other researchers cautioned that the test needs more study before it is ready for widespread use. The screening exam uses four separate recall and thinking quizzes that are scored together to separate people with normal aging memory from those who might have serious problems, said Paul Solomon, a psychologist and co-director of the Southwestern Vermont Medical Center memory clinic. The results of a study of the Alzheimer's test given to 120 people are published this month in the Archives of Neurology. Results on testing another 800 people were consistent with the first findings, but those results have not yet been published. The four quizzes probe a patient's ability to recall words and images seen moment before, along with finding a solution to a simple clock problem. The first test asks a patient to state the current year, month, date, day of the week and approximate time. The next quiz involves flash cards, shown in sets of four, that picture ordinary objects in 16 different categories. After viewing the cards, the patient is asked to recall the picture sets. Reminder words are provided if needed and these often help non-Alzheimer-susceptible test-takers. In the clock problem, a patient is given pencil and paper and asked to draw a clock face, with 12 numbers in the proper place, and to arrange the hands to show a particular time. People with memory problems will make mistakes. In the final quiz, a patient has one minute to name as many objects as possible in a single category, such as "vegetables" or "furniture." People with normal memories will easily come up with 12 or more, said Solomon. "We hope to have this test available for widespread use by late summer of early fall," he said. Zaven Khachaturian, director of the Reagan Research Institute of the Alzheimer's Association, said such a test would be extremely useful, but cautioned that it is not clear if this one can tell the difference between people with Alzheimer's and those who have memory problems caused by other disorders. That is important, he said, because some types of dementia can be corrected with aggressive treatment, while there is very little therapy that can significantly affect the course of Alzheimer's.


In Passing: Those We Must Remember

MuzzyW wrote to say that her mother died peacefully at home today, Thursday, April 16, 1998. MuzzyW had been caring for her mother at home for some time. I am writing this for her since her computer is down. BHostSTS


A MESSAGE TO MY CAREGIVERS

What you see now is not the real me
It's only the shell of what I used to be
The disease process that is raging in my brain
Is causing me to act as if I am in pain.

My pain is confusion,
fear and frustration
because I no longer am in touch
with my true situation.

Please know that the personality
I grew into has long gone
This disease has destroyed my ability
to behave rationally and to think clearly.

My entire life was devoted to the care of others As a registered nurse, daughter, sister and aunt, I was a surrogate mother to many-a biological mother to none. I loved and served humanity and wish to be remembered in that manner.

So whenever I utter harsh words or act in a non-rational manner Please recognize that I don't know that person. When your patience with me wears thin, try to remember I am confused and afraid because I don't recognize any part of the present I don't know that tomorrow exists and I recall only some of my past.

My brain cells are gradually going to sleep or have died. However, I remain a physically healthy 81 year old Alzheimer victim who is totally dependent upon you. Please handle me with T L C and kindness. GOD BLESS YOU FOR CARING.

...by Joyce Sutter--Copyright 1996


Email, email, we get email

From DKThomp

Hi everyone, Isn't it strange how a memory of long ago will suddenly pop into one's mind? Why does the mind connect some throughly pleasant event that happened many years ago with what one is doing at the present time? Is it because I am getting old? If so, then getting old isn't so bad after all. I was up at 3:30 this morning wide awake when these thoughts came upon me. For some reason, I began to reminisce about the summer of 1956 soon after Ann and I were married. We took a couple of days off work and drove to the Outer Banks of North Carolina where we spent a perfectly lovely weekend at the Cape Hatteras Motel at Buxton, N.C. Both nights we walked down the beach as far as the Cape Hatteras lighthouse and back. We walked hand in hand and I distinctly remember how the moon light shimmered off of the ocean, and how it seem to cast a glow off Ann's long hair. She wore beautifully long hair in those days. How wonderfully pleasant is this memory. Thinking about this I started to write a poem, a sonnet to my lovely Ann. As she walks into this becloulded labyrinth of forgetfuness and darkness these momories gird up the loins of my heart as the Word of God puts it. In the last stanza there is a great contrast between what my heart of hearts would truly like, and what the unspoken knowledge of my mind surely knows. Sometimes my emotions overcome my reason. Maybe this is a sign that I am still young at heart even at this age.

MY ANN

My Ann, my beloved whose name means all of grace.
My heart is yours, your endearing charms I do embrace.
Long walks we had hand in hand along the Outer Banks without a care.
The moonlight in your hair gave love's luster that only I could share.

Thrilled by her gentle kindness my love for her continued to grow.
Like the dove coming with refulgent tenderness set my heart aglow.
Her smiles, her dreams, her tears
from all her yesteryears now unhappily dimmed, not gone, just mixed with her fears.

Her cheerful composure, her spirited heart will not be broken
by this sad dearth of her loving warm words now left unspoken.
The swelling solicitude of this wretched disease is taking its terrible toll.
Oh, axe of woe, forebear your cutting stroke, my anxious heart is still whole.

Come back my dear, come back my heart, come back to me if you can!
Come back to me, come back my dearest, come back to me, My Ann.


From Alzjane198

Another excellant job. Thank you so very much. It means so much to be able to read how to........and have it right there.


From BetKai

I just want to say THANK YOU SO MUCH for sending me the Alz newsletter so faithfully! I don't know how I would have coped so long without the weekly caregiver's chats and helpful tips and opinions given in this newsletter! My Mother is now in a nursing home since suffering a major stroke which left her unable to walk or stand unsupported. I cared for her for many years, and for the past three or so with Alzheimer's, so I can certainly empathize with anyone enduring the heart wrenching pain and daily ups and downs of caring for someone close to them who is afflicted with this most horrible disease! She and I were always very close (and still are) so it really tore me up to see her memories and personality change so drastically! I also want to respond to the letter from Wanda in the last issue.... I think the best thing you can do is to let your sister find out what caring for your Mother really is like, and maybe she will understand why you needed Power of Attorney and that your Mother, while seeming "lucid" can be quite irrational. She may not see it right away, but given time, I'm sure your Mother will find flaws to pick at with her too! Your Mother may not receive as good care with her as she did with you, but it will be a learning experience for your Sister, and hopefully she is not so careless as to actually neglect your Mother's needs, but she may find how extensive those needs really are! Maybe you can take this time to let your own needs have some attention again... I know I really neglected myself, physically and emotionally, for the past few years. I'm only now beginning to get my life going in some kind of pattern again. When your sister finally asks for your support (and she will unless she is too angry or proud to ask) give it with love and "no strings attached" and she will see what a good person you truly are (and maybe your Mother will appreciate you more too if she is able to understand). It is sad when financial concerns divide a family and it is usually due to misunderstandings on both sides. My Brother and Sister, though supportive, were unable to help care for my Mom since they both live out of town. I felt resentful at first, but finally realized that they had their families to care for and their own lives to live....and that I had made my choice long ago to be with Mom...and it was MY choice, not theirs. They eventually gave us some financial support as well as occasional weekend visits and regular phone calls...so we sort of worked it out. I had a "verbal fight" with my Sister at that time during which we both made remarks we would regret later, but I patched it up with her and we worked it out. I hope you can too. If you need someone to "talk to" just send me an e-mail! (betkai@aol.com) -Betty


From GivinCare

Dear Karen and Jamie, After watching my dear mother pass from this world with AD, I want to share information that may help others in the final stages of this horrible disease. Your loved one is entitled to benefits of Hospice for the last months of life. This service is available both at home and in a nursing institution, in addition to the service regularly provided by the institution. Hospice supports both the dying loved one and the family through the dying process. The difficulty lies in getting the doctor to refer your loved to Hospice for an evaluation in a timely fashion. One of the Hospice criteria is that the doctor must be willing to state that the patient will most likely live less than six months. With AD, this is difficult to determine, and the doctor may be unwilling to make the referal. While there is time in advance, speak with your loved one's doctor about his/her willingness to make this referal. In my mother's case, I had asked the doctor for the referal 5 months before she actually passed away. He refused to make the referal, and she subsequently went to a nursing home where she got the flu that led to her death. When she did get pneumonia and septecemia, I again asked for the referal. The on-call doctor felt it was too late, since she may be gone before Hospice could get on board. I insisted anyway, if for nothing other than grief support for me. The Hospice nurse was only able to make one visit before the night Mom passed away; she was there with Mom, caressing her forehead, talking to her, and administering morphine to ease her labored breathing, as Mom passed from this world. Without Hospice, Mom would have been left to her labored breathing in the nursing home. Even at the last minute, Hospice made so much difference. Here are some Hospice links with information that could help others prepare for this difficult last phase of giving care.

Hospice Net - Death and Dying, Caregiving and... Preparing For Approaching Death

My prayers are with all AD families... Sincerely, Debi Owens Boulder, Colorado


That's all we have room for this week. Remember to take care of yourselves.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)

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