Volume 1, Issue 11 - The Ribbon Newsletter

Issue 11

I want to start out by giving out a few thanks. First of all, I'd like to say kudos to Karen for putting together the last issue. I was in the midst of running back and forth to the Intensive Care Unit at the hospital and couldn't find the time to work on the newsletter. Thank you Karen! Second, I'd like to say Thank You to all the members who kept my mailbox full with well wishes. You can't begin to imagine how that helps when you are going through a hard time. Hugs to All of You, Jamie

End Stage Care

End Stage Care is probably the hardest care of all to give. It is the end. The last part to go through. It is filled with quiet days of hard work, needs that are to be met. Your loved one may not be able to verbalize much of anything. And they may not be able to walk well either, needing assitence to get back and forth to the bathroom or other areas of the house. They may be wheel chair or bed bound. These are the days that none of us look forward to and yet know that they are coming. There are still things you can do for your loved one to give them care and to show them your caring. I honestly believe that people in the later stages know what is going on around them. Due to the illness they are unable to state their acknowledgement. Look into their eyes, smile and wait for the response you get. That is where it will come from. Now is the time to keep doing all of the good work you have done in the past with a different touch. Because skin gets so dry you may want ot give your loved one a massage with scented oils or their favorite cream. Touch is an important sense and it has been shown that people live happier with touch in their lives. Give hugs when possible or as the person allows. Let that person know they are still worth being touched by another human being. While doing the massage or other personal care talk to your loved one. Talk about of what the smell of the oil or cream reminds you. Talk about your favorite memory with that person or a family member. Or talk about life going on around you and your loved one. If the person can tolerate it, you might want to play music that they have enjoyed in the past as well. Another activity you may want to do is read an article out of their favorite magazine or book of poetry. Read about something they used to enjoy doing or by a favorite author. It could be about fishing, auto care, gardening, the latest styles from Paris, whatever that person used to enjoy knowing about. You may only be able to do this for 15 minutes at a time but it is fifeteen minutes of shared time. It is important to maintain good hygiene and movement as much as possible. If your loved one is beddridden, make sure to change their position every two hours to prevent pressure sores from occuring. Use cleansing products on redden areas to prevent skin tears. Try to do range of motion exercises (as the person is able to tolerate) to keep limbs and extremities from being too contracted. Use pads and pillows to raise limbs or to separate knees. Now is also the time to make final plans if they have not already been made. If a power of attorney for health care was not done ahead of time, it is up to the family to make decisions about medical treatment (including g-tube placement and a "do not resuccitate" order), home health services that are needed, and possible use of a hospice. Your loved one's doctor can help put all of this in place when it is discussed with him or her. And as hard as it may be, the family will also need to consider funeral arrangements. Take the time to write it down while thoughts are fresh in your mind, before being overcrowded by grief and loss. Do not forget to take time for yourself. Caregivers need to take breaks, too. Take the time to go for a walk or read a book or do whatever it is you enjoy. You need those times in order to regroup your senses and continue to be a good caretaker. Take full advantage of home health or day center or family members who want to give you a break. Not all day center can handle people in the end stage and you may want to consider using hospice instead. As much as it is the last and final days, try to make each day a good day for you and your loved one. Be loving, be playful, be the best caregiver that you can be for that person. I know that if they could speak they would say "Thank You". Written by SewingBabe

Thrive's Health Advocacy Workshop Week 4: PREPARING FOR THE END

MARY MEYER:Welcome to WEEK FOUR of thrive's health advocacy workshop! Tonight's topic is, PREPARING FOR THE END: From living wills to medical powers of attorney. I'm Mary Meyer, the program director at Choice in Dying, a nonprofit organization that is dedicated to fostering communication about complex end-of-life decisions. I have produced several educational tools, including question and answer booklets for patient and their families on end-of-life decision-making, and "Advance Directives and Public Education," a manual for institutional caregivers. I am also an editor for Choice in Dying's award-winning newsletter, Choices. I'm happy to be here tonight to answer your questions.

USER 1:considered a legal What is document that would qualify as a "living will?"

MARY MEYER:known as an In most states, a living will is also instruction directive because it gives specific instructions about care at the end of life. In most states it requires two witnesses to make it a valid legal document. Also, in most states, the witnesses should not be related or entitled to the person's estate or be part of their medical team -- but that varies from state to state. In most states, they do NOT have to be notarized. I'd like to distinguish the difference between a living will and a medical power of attorney: A living will gives instructions. A medical power of attorney appoints a person that you trust to make decisions on your behalf if you are not able to make them yourself. In general, this allows for more flexible decision-making because your medical power of attorney can make decisions about situations that you couldn't anticipate and they can be an advocate to see that your wishes are carried out.

USER 1:member and your friends -- who you would leave What if there is no family responsible for this -- lives far away?

MARY MEYER:appoint someone who lives far away because they You can still can confer with doctors and other medical personnel by telephone. You would need to be sure that your doctor put your agent's name and number in your records. The other thing, your agent needs to know what your wishes, in fact, are. You need to really talk to them honestly and openly -- and more than once about how you feel about the use of aggressive life support systems. Particularly if you have a terminal, or are suffering from, an irreversible disease or condition. If your agent doesn't know your decision he or she may not be able to make a decision. Your living will is another way to let them know your wishes. But you need STILL to talk with them so that they understand what you had in mind when you prepared it. Terms like "no heroic measures" mean very different things to different people, so you need to explain what that would mean to you. You need to talk about the quality of life that's important to you. If you had a serious stroke and suffered brain damage and could no longer recognize people but were otherwise content or seemed to be reasonably happy, how aggressively would you want life support that would keep you alive in that condition? People view this very differently and you cannot assume that someone you are very close to will feel the same way about it. These documents are TOOLS to aid communication -- they cannot substitute for it.

USER 1: Wow... thank you. Never thought of things in that manner!

THRV Dev:wondering if the person you chose as I was your agent is NOT a relative or related by marriage, does it make it less likely to be followed?

MARY MEYER: The answer is no. One of the reasons that medical powers of attorney are so important is that it ensures that the person you want to make decisions for you has the legal authority to do so. Many people will choose someone who is not necessarily related or not their closest relative. In formal laws that governs decision making -- doctors typically look to the closest next of kin. Now, many people would not want that person to be the one to make decisions for them -- this can be particularly true for gay couples or couples who are not married. In these cases, the person who may in fact be closest to the patient may be blocked from any decision making unless they have been formally appointed as the decision maker.

USER 2: MARY MEYER: Next of What can someone do to ensure that their organs are donated? kin have to consent to organ donation. Therefore, you can do organ donor cards or even write it in your living will as a guide, but unless your next of kin consents, they will not be taken. So the most important thing is that your next of kin or family know your wishes to be an organ donor and will follow your wishes. If the family objects, the organs will not be taken. You might want to call one of the organ banks for more information on that.

THRV Dev: Do you need the specific form or can you type one up and notarize it?

MARY MEYER:the state specific form. A It's safest to use written statement would still be important legal evidence of your wishes, but if your state has any particular requirements that you have not met in preparing your form, it will not be viewed as "binding." You can supplement the state specific form with your statement of wishes written out in letter form. But having said this, any written statement would be better than doing nothing. Because it is important evidence of your wishes if that were needed. You can get free state specific forms by visiting Choice in Dying's Website: http://www.choices.org/ Or for more information, please call CHOICE IN DYING at 800-989-WILL (800-989-9455).

THRV Dev:to know how I can have Yes, I wanted my partner, to whom I am not married, carry out my wishes about organ donation? I thought by having her listed on my durable power of attorney for health care that would protect me. I even have a donor card. My next of kin is my 9 year old daughter.

MARY MEYER:organization. I have been told by It may. I would check with an organ donation representatives of organ donor groups that the family can be key regardless of what you have in writing. It sounds like if your partner is your legal representative, then that may cover you if there is no one who would strenuously object. But again you should check with the appropriate information, this is not my expertise.

USER 1: Where is the best place to keep these documents -- besides giving a copy to my agent -- where it can be easily obtained?

MARY MEYER: You want to keep the original in a safe but accessible place -- NOT a safe deposit box. Give photocopies to your agent, alternate agent, physician, for your medical records, and for anyone else you want to know about it. But you always want to keep the original yourself. You can tell them where to find it. But the hospital or physician can work with a photocopy. The reason they need to know where the original is kept is that if someone suggested that you changed your mind or destroyed the original or invalidated in some way then it might be important to have the original produced. But usually a photocopy is enough.

USER 2:old cover themselves in the same way as Can someone less than 18 years an adult?

MARY MEYER:prepare an advance directive but you need to Some states permit emancipated minors to check the individual state law in one or two states parents can make advance directives on behalf of minors. You can call Choice in Dying if you need to know which states. I wanted to address here a question I get very often: What if you don't have anyone to appoint as your agent? In this situation, it is very important that you prepare a living will. Take your living will to your physician and discuss it with him or her. If you have clergy, a social worker, anyone who might in some way be involved in your health care, let them have a copy of it and talk to them about what you have in mind. Also keep a copy of this document where it would be easily accessed. You will be depending on others to implement your wishes so it's particularly important that your medical providers know your wishes and are committed to honoring them.

THRV Dev:of time?

MARY MEYER: I don't think any states Do these documents expire over a certain period now have an expiration date. But look on your form -- it would be on the form if there was an expiration date. I believe most states have eliminated that. You can yourself designate a time when it ceases to be valid if you wish to.

USER 1: Out of curiosity, are the forms that are sold at office supply stores really valid and helpful?

MARY MEYER: If they follow the state statute. Many hospitals also make them available and one would assume that they will follow the state law.

USER 1:MARY MEYER: A hospital doesn't have to make them available, I never knew the hospital. Thanks! but many do.

THRV Dev:Jan. of 1993 I believe, anyone who was admitted to the hospital In California, starting in was required to be informed of their right to have a living will. Do other states have this requirement?

MARY MEYER: In 1991, federal legislation called, the Patient Self Determination Act was implemented. This requires any institution that receives Medicaid and Medicare funds -- such as hospitals, nursing homes, HMOs -- to tell people upon admission about their rights under state law to prepare advance directives and then they have to document in the chart whether or not the patient has one. So in every state this would be true.

THRV Dev: Ah, I see now.

MARY MEYER: The law was passed to educate both the public and the providers about patient's rights in hopes that this would improve decision making in difficult end of life situations. Good question.

MARY MEYER: I have another question I want to bring up that gets asked a lot: Who will make decisions for me if I do not have an advanced directive and can't speak for myself? And the answer to this depends in part on the decisions that need to be made and on state law. In general, family or next of kin are looked to for consent to treatment if the patient can't consent. However, under some state laws, the family cannot withdraw treatment unless there is an advance directive or other clear evidence of the patient's wishes. That's why it's particularly important to have advanced directives if you are concerned about receiving unwanted treatment if you are irreversibly ill.

USER 3:What happens if a doctor does not follow an advance directive? Or refuses to follow an advanced directive?

MARY MEYER: This is one reason to have a health care agent because the agent can be your advocate. The agent can fire the doctor. The agent can go to the administration. In extreme cases, the agent can seek legal counsel on your behalf. Some doctors are reluctant to follow patient's wishes -- particularly if it involves withholding or withdrawing treatments. So your agent also needs to be someone who can be assertive with the providers if necessary. That brings up a great point. Here are some things to think about in appointing a health care agent: First the person needs to be someone you trust and who is willing to be your agent. You should never appoint an agent before asking. Make sure they are willing to accept that responsibility. Sometimes, someone you want to appoint will tell you that even though they would want to honor your wishes, they might personally feel unable to direct the treatment to be stopped -- even if they knew you wanted it to be stopped. There may also be practical considerations on whom you want to appoint. One person may be geographically more conveniently located. A person may have professional experience that may make them more easily able to cope with the situation. If a person is easily overwhelmed by authority -- particularly by medical care providers -- they might not be a good agent. The most important thing is to have a frank talk with that person. Many people might feel honored to be asked to serve as your agent even if it would be difficult for them. To be someone's agent is to offer or provide a wonderful gift of caring. Both asking someone to be an agent and accepting that responsibility says an enormous amount for how we care for each other. We're nearing the end of the show... One last word: These decisions may be difficult to bring up, but they are an opportunity to talk about issues that of great importance for you and your loved ones. People often avoid these conversations, but preparing the forms provides an opening for beginning these discussions about end of life concerns. Many people have reported to us how grateful they were that their loved ones had relieved them of the anxiety of not knowing what they would want done when they were at the end of life. Even though the discussion was hard, it spared those who had to make decisions a great deal of anguish. Once again: For more information, please call CHOICE IN DYING at 800-989-WILL (800-989-9455) or visit the Web site at: http://www.choices.org/ Thanks for all the great questions! (c) 1997 THRIVE

Happenings

Hope all is well with you. I wanted to drop you a note and let you know that the Alzheimer's group on the Better Health website has started (about a month ago now) on Thursday nights at 9PM ET at http://www.betterhealth.com (click on the Chat button, then click on the Weekly schedule and find the chat on the schedule, click on the hyperlink). I also wanted to let you know that if you want, now that we have a group on the website, I'd be thrilled if you would announce your newsletter on the Better Health Web message boards, as well as the AOL groups, so that the members of the website who belong to AOL can also attend the AOL chats. I've noticed a growing number of AOL members attending the chats on the website, and I think there is an audience that can benefit. Could you add a "Blurb" in The Ribbon about the Web Chat, for those members on the mailing list that may not be able to attend the AOL chats because they don't belong to AOL? Thanks a bunch! And thanks for keeping me on the mailing list--you guys are doing a FABULOUS JOB! Hugs and love, Meghan

Editors note: This is the same web site that Bill was trying to get up and going. I think its a great idea. Give it a visit. Better Health & Medical: A Health Community or Better Health Chat Central

Medical News

From LPNYFLGANY

New Research Highlights Effects of Aricept(R) Donepezil HCL) on Functional Brain Activity of Alzheimer's PatientsMINNEAPOLIS, April 29 /PRNewswire/ -- PET scanning (positron emission tomography), a brain-imaging technique, is giving Alzheimer's disease specialists a visualization of the activity of ARICEPT(R) (donepezil HCL) tablets in the brain. In a new brain-imaging study presented at the 50th annual meeting of the American Academy of Neurology (AAN), researchers have shown the effect of the medication on functional brain activity. "Through results of this study, which imaged the brains of Alzheimer's patients during ARICEPT(R) treatment, physicians can obtain a more concrete impression of the drug's impact on functional brain activity," said Larry E. Tune, M.D., lead investigator of a PET study performed at Emory University and presented at AAN. Dr. Tune is a professor of psychiatry at the Emory Center on Aging in Atlanta and chief of Geriatric Psychiatry at Wesley Woods Hospital in Atlanta. PET is a technique to measure the functional activity of the brain, such as cerebral glucose metabolism (the brain's ability to utilize glucose). PET uses radioactively labeled tracers to provide detailed information about functional brain activity. This technique permits estimates of cerebral glucose metabolism in whole sections or in regions of interest in the brain. PET studies have shown that a reduction in cerebral glucose metabolism is linked with progression of Alzheimer-type dementia. Cholinesterase inhibitors previously have been reported to increase brain glucose metabolism. The new PET study data suggests retention of cerebral glucose metabolism in patients with mild-to-moderate Alzheimer's disease treated with ARICEPT(R) compared to placebo-treated patients. Over the course of the 24-week, double-blind study, researchers used PET to measure the cerebral glucose metabolism of patients with mild-to-moderate Alzheimer's disease taking ARICEPT(R) 10 mg. tablets once-a-day compared to patients taking placebo. At the close of this study, ARICEPT(R)-treated patients showed no apparent changes in global functional brain activity from baseline (-0.5 percent), as measured by cerebral glucose metabolism. In contrast, placebo-treated patients experienced a decline from baseline at week 24 of 9-10 percent in global functional brain activity -- as measured by cerebral glucose metabolism. The study was not powered to show a correlation, if any, between preservation of glucose metabolism and cognitive performance. According to Dr. Tune, data analysis from this PET study indicates significant preservation of global brain glucose metabolic activity for those patients treated with ARICEPT(R) compared to those treated with placebo. To date, more than 400,000 people in the United States have begun ARICEPT(R) therapy, a total of 55 million patient days. ARICEPT(R) is a reversible inhibitor of acetylcholinesterase, an enzyme found in the central nervous system that breaks down acetylcholine. Acetylcholine, a substance in the brain that is vital for nerve cell communication, is an important neurotransmitter involved with memory and cognition. ARICEPT(R) is convenient -- dosed once-a-day. In controlled clinical trials, both the once-daily 5-mg dose and the once-daily 10-mg dose have been shown to be effective. Some patients might receive additional benefit from the 10-mg dose after four to six weeks of 5-mg once-daily therapy. The drug's most common side effects include nausea, diarrhea, insomnia, vomiting, muscle cramps, fatigue and anorexia. In clinical studies, these effects were often mild, and went away with continued treatment. People at risk for ulcers should be checked often by a doctor when taking ARICEPT(R). Also, syncopal episodes have been reported in association with the use of ARICEPT(R). ARICEPT(R) is not associated with a risk of liver damage. Full prescribing information is available upon request. SOURCE Pfizer Inc; Eisai Inc.

In Passing: Those We Must Remember

Forwarded from BHostRidl... TripTwenty, wishes to be removed from the mailing list. His mother passed away a week ago................he and I both say thanks to you guys for the newsletter.

From DrMOM1955 Some of you met my best friend and ex Sis-in-law, (Sha3711) in the Caring for Elderly Loved Ones Support Group. Her mother passed away at her home on June 4.

Email, email, we get email

From eswint@aims.edu I just want to join in and say how much I enjoy your newsletters. How much they have helped me. I can't remember which one it was, and I accidentally deleted it before I could print it, but by using the newsletter describing what stage my mother is in, I think she is in the Stage V. And that is why I'm writing. Could you email to me the newsletter that described the stages of AD? If it weren't for my friends on the Internet, I would be lost. I still remember when the doctor first told us that Mom had AD. She said "Your Mom has AD. Come back in 6 months and join a support group." I was definitely disappointed in any help I thought I'd get from the doctor. This newsletter has helped me the most. We have support groups in my town the second Tuesday of each month, and so far I haven't made it to a one of them. But the group leader leaves me messages and sends me information and I hope to be able to go to the next meeting. Mom is living in a small independent living facility. I visit her daily. Every day there's a new challenge. The longest one we've been dealing with is her paranoia. Some of it would be funny if it wasn't so sad. Well, I've rambled too long. Thanks again. God bless you. Elsa

From Mar rob 1 Thank you for the newsletter...the problem is that my mother doesn't think there is anything wrong with her. My brother has been here 10days--he is wonderful. I am here all of the time and always wrong. My brother understands--my mother does not. We leave this woman (82) alone until she makes a mistake that will put her in the hospital ???? I guess. She thinks nothing is wrong and certainly wouldn't think of living anywhere but her home..Leave her?? Her doctor said he would have to sedate her if we tried to take her out (to keep her controllable) She would have noone live with her. Any comment??? Thanks! M.

That's That's all we have room for this time. Please remember that articles or email you send may be saved for a future issue. If we put too much in we have a problem getting the newsletter to email.

See you in the chats, Karen (KMenges581) and Jamie (DrMOM1955)