ElderCare Beacon Newsletter

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ElderCare Beacon +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 1, 2000 Vol. 3, No. 1
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ElderCare Online – The Internet Community of Elder Caregivers http://www.ec-online.net
"Tell me why – Show me how – Hold my hand" (sm)

Dear Friends,

Happy New Millennium!

I hope that everyone has recovered from the holiday season. While most of you were preoccupied with family activities and hands-on caregiving, I hope that you had the opportunity to pass some of the responsibility for caregiving onto other family members and enjoy yourselves.

As we begin the year, I want to welcome all of our new members and our new volunteers. In the next few months, we will be introducing several experienced caregivers as Activists and Mentors. These folks will help to answer the many questions that you e-mail each week, host online support groups and help write practical articles to relieve the stresses of caregiving. Please stand by until February for a complete mini-site featuring our volunteers.

Two of our volunteers, Mary Waggoner and Dorothy Womack have already prepared helpful articles for this month’s newsletter. Please continue your positive feedback.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

Monthly Feature: Caregiver Resolutions by Mary Waggoner
Please Help With Our Survey
Drugstore.com Discount for ElderCare Online Members
Newsletter Article: Caregiver Guilt by Dorothy Womack
Chat Schedule for January
Subscription Information

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MONTHLY FEATURE: Caregiver Resolutions by Mary Waggoner

This millenium, I vow to keep the following resolutions:

1) I will set limits.
a) I will get rid of that voice inside of me which says: "I am responsible for everything, and no matter what I do, it will never be enough. I am always guilty for doing something good for myself."
b) I will determine what I can reasonably do for my loved one and draw some boundaries for myself. This will ease some of the tension and I may be surprised at the relief of guilt I feel.

2) I will accept and enlist help.
a) Siblings, other relatives and neighbors often offer to lend a hand. This year, I will say YES to those who offer to help and do so gratefully.
b) I won't waste my energy on trying to change my loved ones. I will tell my loved one what I think and if he/she refuses to heed my advice, I will have no choice but to give up on that particular area (as long as it is not life endangering).

3) I will learn to say no.
a) I will learn to say no to my loved one if I will be over-extending myself emotionally or physically. It is not a gift of giving or caring if I am burning out.
b) I will practice saying No in front of the mirror. For example: "No, I am not going to call the doctor for you. You need to speak to the doctor yourself to avoid third party confusion."

4) I will accept the Unthinkable Thoughts as part of being human.
a) It is okay to wish my loved one would die if they are in terrible pain. It is even okay to feel that way if they are not terminally ill or in terrible pain but because I am simply tired of worrying and wondering what is going to happen next. I am NOT a bad person to feel this way. I am only human.
b) It is normal to feel guilt and helplessness. When I feel this way, I am going to look at the situation from another perspective. I am going to look at what I AM doing, not what I am not doing, for my loved one.
c) I will try to alleviate any anger or resentment as soon as I recognize I am feeling it. If I am resentful because I am doing too much for my loved one; I will do less. If I am angry, I will not act right away. I will take a walk or wait until I simmer down before addressing my reasons for being angry. I will be in control of my reactions and actions.

5) I will find enjoyable ways to ease stress and take care of myself. Here are some examples:
a) Find some respite care for an afternoon of self-pampering (reading a book, getting a haircut, getting my nails done, etc.)
b) Find a friend to get together with once a week for coffee or talk on the phone, go for a walk, do something with my friend which makes me feel refreshed.
c) Love to laugh. Rent a funny movie. Consider what is funny about the situation. Let's face it, dentures are funny. So are some sourpuss hospital personnel are funny. Try to find humor in the most annoying situations.
d) I will pursue other interests.

This millenium, I will keep these resolutions and accept that I am only human.

Copyright 1999 by Mary Waggoner

PLEASE HELP WITH OUR SURVEY

I have developed a short survey that I am asking your assistance in completing. As I devote more of my efforts to our online community, I want to be sure that it reflects all of your interests and needs. The survey will expire on January 15, 2000, so please respond if you have not already done so.

Specifically, I am looking to see where you are from, whom you are caring for, what are your topical information needs and how you perceive the actual website.

This is NOT an attempt to drop cookies on your hard drive, track your clicks or amass personal information! After I collate the survey results, the information will be deleted. If you do not want to answer a question, simply skip it or cancel the survey.

I will select seven respondents for a special prize as gratitude for fully completing the survey.

I am using a web service called "Zoomerang" to administer the survey and collate the information. Please begin the survey by clicking on this link:

Thank you for participating. The survey has been closed.

NEWSLETTER ARTICLE – Caregiver Guilt by Dorothy Womack

The role of a caregiver at home is usually followed by varying degrees of guilt. This happens regardless of our effectiveness, as it seems to be virtually impossible to care for one’s loved ones and simultaneously face the realities that we will inevitably lose them. Most of us eventually confront not only the loss of our loved ones, but the guilt that we could have done more, should have known better, would have done differently in retrospect. This increases not only our guilt, but our grief as well. We long to spare our loved ones from the ongoing progression of disease and death – but we cannot save or rescue them. We are helpless in the face of the inevitable – Life in the body ceases to function and life in the spirit begins. Our loved ones depart houses no longer adequate to hold them and move onto a new dimension, while we remain behind – often shattered by our grief and shackled by our guilt. We only compound our grief when we weigh ourselves down with guilt. We take on a task that requires Herculean effort - and despite our best intentions, there is an end that we anticipate, but seek desperately to avoid. At the end of human life exists a new beginning – not just for our loved ones but for ourselves as well.

Guilt is destructive – It impedes our progress and inhibits our own destinies in this life. We spend our time berating ourselves for where we perceive failure rather than focusing on all the good we achieved, the quality of life we brought to our loved ones and the character development that ensued as a result. The best knowledge we can possess is that our efforts made a difference in the last days of our loved ones. It takes discipline to focus on the attainment of a higher level of living for all of us as the mortal bonds are broken – However, our loved ones live on in our hearts forever and those eternal bonds remain. Guilt merely clouds our vision and torments our minds – Peace comes as we realize and acknowledge that there was purpose to all we shared – The lessons learned change us and equip us to better empathize with those who follow after along our paths of experience. Release the guilt you carry and listen with your heart – You will truly find your loved ones not only dwell in peace, but wish the same for you as well . . .

Copyright 1999 by Dorothy Womack

DRUGSTORE.COM $10 SAVINGS FOR ELDERCARE ONLINE MEMBERS

From time to time, we provide our valued newsletter subscribers with access to time- and money-saving opportunities. We never reveal your personal information or e-mail address.

Drugstore.com is one of the leading Internet stores selling health and wellness products, personal care products, prescription drugs and other products used by caregivers. Please browse through the drugstore and compare prices with your brick and mortar drugstore. With the $10 coupon, you will likely find some great bargains.

In addition, drugstore.com is extending their "philosophy" gift offer for new customers. The details? With ANY purchase, all drugstore.com customers get a FREE gift set of 3 luxurious bath and skincare products from philosophy (limit one per household). The gift set is a $25 value.

Please follow this link or copy the code into your browser exactly. This will ensure that ElderCare Online receives the proper credit for your order and that you receive the $10 discount.

http://www.drugstore.com/user/promo.asp?code=rewards&aid=2579&aparam=10-promo

JANUARY CHAT SCHEDULE

We will be running a more complete list of ElderCare chats and real-time support groups on the Internet in the February 1 issue of the newsletter. This month, ElderCare Online will only host one special chat session. Look for the Caregiver Support Network in February – it will include details on these and other online support groups. If you regularly attend an online support group or host one, please forward information on it to roboyoboy@worldnet.att.net.

Chat on ElderCare Online:

January 25th at 1:00PM EST: "Diagnosing Alzheimer’s Disease" with Dr. Mary Sano from the Gertrude Sergievsky Center at Columbia University. Join us for an informative and lively discussion of the procedures, tests and issues associated with diagnosing Alzheimer’s Disease and distinguishing it from other forms of dementia.

I also want to tell you about two consistently helpful support groups on the Internet: Bubblehead’s Chatroom and the Candid-Dementia Chatroom. Both have regular attendees and set (although flexible) topics. The participants will make you feel right at home and help you with your caregiving ups and downs

Monday night chats start at 9:00PM EST in the Candid’s Virtual Carers Chatroom at http://dementia.ion.ucl.ac.uk/candid/chat.htm . On Tuesday nights the chats also start at 9:00PM EST but they are in Bubblehead’s Chatroom at http://members.xoom.com/Bubblehead/AlzheimersCG.htm. If either chatroom does not accept your nickname or tries to tell you that you need a password just add a number to your nickname like 54 and you should be able to come right in. For more information, contact Edyth Ann aka Bubblehead aka Queen Bubble edythann@netzero.net ICQ # 2665330

January 10th and 11th "End Stage Issues and the Final Passing:" This is a subject that is very popular but I avoided over the holiday months. Many including me are now facing this stage. There are many more that will be facing it sometime in the future. For some it is going to be very hard and frightening. I find that it is often harder when this topic is not discussed and it is the unknown that is really frightening rather than the event.

January 17th and 18th "When Is It Time That the LO Should No Longer Live Alone:" The early stages are equally as scary because in many cases we naturally tend to cling to denial and most family members facing this situation is doing so without any idea of what this disease is or any experience. Most will set with a set of ideals and values only to find that many do not apply in the reality of the disease.

January 24th and 25th "Alzheimer’s Disease Behaviors and How To Adjust For Them:" As your LO progresses in the disease you are going to see a wide range of behaviors that may not have been normal prior to the disease but may have a normal range in the disease. Even though there are medications to help deal with some of these behaviors at there worst, medication is still used only when environmental adjustments and our ability to adapt does not bring it to a manageable level. The big problem is so many CGs never had to learn how to adjust the environment or their approach to deal with these behaviors let alone know that there are things they can do.

January 31st and February 1st "Pick's and Other Dementias:" Having regular discussions on other dementias is necessary. Even though these other dementias are generally lumped under Alzheimer’s Disease, they are different.

SUBSCRIPTION INFORMATION

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