ElderCare Beacon Newsletter

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ElderCare Beacon
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June 15, 2000                                                                                 Vol. 3, No. 11
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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)
Serving the Needs of Caregivers Since 1997

Dear Friends,

All too often we focus on the challenges, burdens and tasks associated with our caregiving responsibilities. Sure, it is difficult, especially the added pain of Alzheimer’s Disease or end-of-life caregiving. But there is something missing from the discussion of caregiving (even on this site). There are rewards and benefits to being a caregiver. By refocusing the discussion to emphasize the benefits of caregiving, hopefully we can come to accept these changes and learn and grow from the experience.

I will be the first to admit that ElderCare Online has a heavy focus on the practical aspects of caregiving – and these necessarily deal with managing problem behaviors or coping with difficult issues. Nevertheless, we strive to emphasize positive ways to improve quality of life. In coming months you will see more articles and discussions that focus on reframing the caregiving experience to help the emotional journey of the caregiver.

As a caregiver to a parent or spouse you have the opportunity to grow through your experience. Each of us can make the choice about whether to make the best of a situation or to focus on the negative. Too often, there is family and emotional baggage that push us down the wrong path. Regardless, there are benefits to caregiving: One can reconcile oneself for past failures within the time allotted while your loved one is still alive; one can reach a greater self-understanding by being open to healing rifts and examining oneself; and one can complete the cultural cycle within a family of caring for a dependent loved one.

I recently attended a conference for professional caregivers. One speaker shared a quote on cancer caregiving that I thought was very appropriate for our members. And I think it is especially powerful for Alzheimer’s caregivers. "Cancer offers the gift of time, its only kindness." We know that our loved one will pass away – but as their caregiver, we have the opportunity to make the most of that time. Time truly is a gift, but we have to use it wisely.

I don’t want to sound nave or out of touch: the pain and sacrifice do not go away completely. It just allows the caregiver to manage day-by-day with an improved frame of mind. Sharing one’s emotions with family and friends and connecting with other caregivers can enhance the experience even more.

I think you will be very pleased with this issue of the newsletter. We now have a professional moderator for the Alzheimer’s & Dementia Care section of the ElderCare Forum message board. Mark Edinberg, our newest Contributing Editor, has just published his first article on the site. And we have started a new discussion group for dementia caregivers every Thursday night. Please read on for more details.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum: Barbara Bridges Joins as Expert Moderator
Hot Topic: Discussing the Alzheimer’s Diagnosis with Your Loved One
Feature Article: Do’s and Don’ts of Communicating With Aging Parents
Caregiving Tip: Resolving Financial Turmoil
Casey’s Top Picks on the WWW: Top Alzheimer’s/Caregiving Sites
Caregiver Support Network: Introducing Discussion Host ZuZu
Live Discussion Groups: Schedule for June
Subscription Information

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ELDERCARE FORUM: Barbara Bridges Joins as Expert Moderator

Barbara J. Bridges, R.N. is the newest member of the ElderCare Forum discussion group. Starting this month, Barbara will join our online discussions to provide expert advice, guidance and support. She is very well-suited to this role – she is a nationally recognized author, nursing professional and family caregiver.

Barbara’s participation brings a professional voice in our community in addition to the many active family caregivers. Over the next several months, she will bring her trademark practical and "to the point" sensibility to bear on your tough questions. I encourage you all to become more active in the Forum, especially the Alzheimer’s & Dementia Care section. By sharing your questions and responses in the Forum, you make it easier for other caregivers to stay on top of their challenges.

Remember: We recognize the value of your time and wisdom – every month three participants will be rewarded with a caregiving book or other practical gift. This month, we will reward those three participant with complimentary annual Silver memberships to the AgelessCare 24 Hour Nurse service. This service provides telephone access 24 hours a days, seven days a week to professional nurses. You must be a registered member of the Forum (otherwise we can’t contact you to tell you that you have won!) For more information or to subscribe to this service, click here.

Barbara was born in the Seattle, Washington, area of the Pacific Northwest. She received an undergraduate degree in Nursing, and a graduate degree in Business Administration from the University of Washington, and holds graduate degrees in Nursing and Health Care Management from California State University at Los Angeles. She has more than 30 years of nursing experience, many of them as a nursing administrator in Southern California medical centers.

Barbara interrupted her nursing career to become a caregiver for both of her parents who had dementing illness--Alzheimer's disease and strokes. Fourteen years of experience as a caregiver led to the start of her own business as a geriatric care manager, consultant, and educator.

Barbara is the author of "Therapeutic Caregiving: A Practical Guide for Caregivers of Persons with Alzheimer’s and Other Dementia-Causing Diseases," a book that is recommended by many Alzheimer's Association chapters and Alzheimer's Disease Research Centers nation-wide. She presents seminars for family member and professional caregivers, and is a support group facilitator for the Alzheimer's Association of Western and Central Washington.

HOT TOPIC: Discussing the Alzheimer’s Diagnosis With Your Loved One

Our newest feature for the ElderCare Forum is a bi-weekly focused discussion or "Hot Topic." Important and difficult topics frequently arise during our real-time discussion groups and no one has all of the answers. Now we can use both the real-time discussion groups and the Forum message board to hold extended conversations on these topics.

Every two weeks I will start a discussion and request a guest moderator to help the discussion along. A guest moderator can be anyone who has experienced the particular problem – either a professional or hands-on caregiver. As a special incentive, the guest moderator and one respondent will receive a reward from ElderCare Online (usually a caregiving book or free gift from one of our sponsors). Just email me at roboyoboy@worldnet.att.net to volunteer to become a guest moderator (and to suggest a Hot Topic).

Hot Topic for June 15: Discussing the Alzheimer’s Diagnosis With Your Loved One

When you receive a dreaded diagnosis of Alzheimer's Disease (or related dementia) it may force you and your family to make significant changes in your life plans and living arrangements. Sometimes your loved one is in the early stages of the disease and may not be aware that anything is wrong, or they may confused, belligerent and in denial.

Whether your loved one is a parent or spouse, it raises the difficult question of whether you should tell them of the diagnosis and prognosis. Many of you have faced this challenge. How did you decide whether to hold that conversation with your loved one? What factors played into it and helped or hindered your decision-making? How did your loved one react if you told him/her? How did you react (guilt?) if you decided not to tell him/her?

Please post your experiences and questions to the ElderCare Forum to help other caregivers in this particularly painful challenge at http://www.ec-online.net/cgi-bin/ubb/Ultimate.cgi?action=intro.

This month we will have a related real-time discussion session on the same topic with a representative from the Long Island Alzheimer’s Foundation. Please try to attend the June 21 session – for details see below.

Each month we give away three free rewards to new Forum registrants (in addition to rewards for responding to the Hot Topic). I encourage you to register to post in the Forum – doing so allows the software to tell you which posts are new and to allow private automatic e-mails to be sent when a fellow member responds to your post. Your e-mail address is secure and never viewable by other members, so you can be sure that we are respecting your privacy.

To encourage participation in the ElderCare Forum, we have modified the software to allow non-registered users to post discussion topics and responses. I have to admit, I am a bit uneasy about this because it makes it easier for spammers and hucksters to easily post their crap to the Forum. But as someone once said: "The price of liberty is eternal vigilance." I will keep my eyes open for any inappropriate activity and stop it before it gets too crazy.

I still encourage you to register as a member – registered members can receive private email message that notify you when their topic is responded to. Also, only registered members are eligible for special rewards for active participation. To participate, simply register as a Forum member and join the discussion. Remember, all personal information that you provide (namely your email address) is kept confidential and is not viewable by anyone but the website administrator. If you decide not to register, do not include your email address in the text of your message if you want to remain private.

FEATURE ARTICLE: Do’s and Don’ts of Communicating With Aging Parents

Communication is skill and art. Skills are specific types of verbal and nonverbal actions that help you get the results you want, including cooperation, joint decision making, and finding solutions to difficult issues. The art part is taking the skills and figuring out how to apply the skills to a specific situation. Your job as a caregiver is to decide what to use and how to use it.

This article includes a well-written introduction, practical lists of do’s and don’ts for emotionally laden situations – along with explanations – and a resource list of recent books on the subject. Read the entire article in our Home Care & Independent Living Channel at http://www.ec-online.net/homechannel.htm.

Mark Edinberg is a psychologist, author, organizational consultant, and part-time jazz pianist who has been working in the field of Gerontology for 30 years. He has been a professor at the University of Nevada, Reno and the University of Bridgeport, for the last decade, and is in private practice primarily working with older adults and their families. Currently he maintains a private practice in Fairfield, CT, consults with nursing homes, organizations and families on a range of topics. He teaches part-time at Fairfield University. Mark is an expert in Intergenerational Mediation – working with families on matters ranging from health to asset transfers). He also works in the fields of sports psychology and organizational training. Mark is the author of three books, including "Talking with Your Aging Parents."

In our next issue, Mark tackles the thorny issue of "parenting our parents." So often we use this phrase – but when we do use it, what are we really saying? Is this an appropriate way of characterizing the caregiving relationship? Check back in two weeks for the complete article.

We have published a number of articles on Family Dynamics throughout the site. Check each channel for appropriate articles. What are your family challenges? Getting siblings to help? Avoiding dredging up old issues? Discussing sensitive topics? Let us know in the ElderCare Forum at http://www.ec-online.net/cgi-bin/ubb/Ultimate.cgi?action=intro.

CAREGIVING TIP: Resolving Financial Turmoil

How many times have you make a mistake with your checkbook that reappeared a month later? Maybe you had to scramble to deposit some cash or wade through old statements to find a check that you forgot to post. As our loved ones age and perhaps lose the ability to manage complex tasks, the possibility of making small errors that grow into big problems gets more likely. But even worse – some people prey on older people who may be more vulnerable to hucksters and scam artists.

The ideal situation is to have a competent family member manage your loved one’s affairs. But so often, you can’t intervene until a crisis has occurred. One member recently wrote about her mother who lives in an assisted living facility with middle stage dementia. She had missed payments on several credit cards and insurance policies. The immediate (but not quick or easy) solution is to cancel the credit cards and try to pay up the necessary policies with as few penalties as possible.

But there is the underlying need to prevent junk mail and telephone solicitors. Call the phone company and have your loved one’s telephone number delisted (i.e., removed from the phone directory). This is a bit of legwork, but is a good way to ensure that your loved one will be protected from unsolicited offers that s/he can not make a clear judgement about.

To be removed from direct marketing telephone and mailing lists, write:

Telephone Preference Service
c/o Direct Marketing Association, Inc.
Post Office Box 9014
Farmingdale, New York 11735-9014

Many patients with dementia find it comforting to have "important papers" and money with them. It becomes a security blanket. You can relieve your loved one’s anxiety by providing him/her with an old checkbook and some cancelled credit cards. One suggestion is to have the bank place a "Stop Payment" on the checks – this allows your loved one to have the checks on hand. But if they decide to spend them or write a gift to someone, the check will be worthless. Unfortunately, it is costly to stop payment on individual checks. Meet with your loved one’s bank representative and explain the situation. Perhaps they can give you some sample checks and you can stamp your loved one’s name on them.

If possible, review your loved one’s mail before s/he can get to the junk mail. This may mean visiting more frequently or at different times. You may decide to rent a post office box and have the mail diverted there. That way you can sort through it for any important papers, credit cards bills or announcements. If your loved one lives in a facility, ask to review the mail before s/he receives it.

Understandably, all of these matters should be handled within the bounds of a power of attorney and appropriate deference to your loved one’s autonomy. If your loved one is in an assisted living facility or nursing home, you should ally yourself with the administration to ensure that your loved one’s mail and finances are taken care of from their end.

ElderCare Online has several detailed articles to help manage your loved one’s personal affairs. Review them on the Legal & Financial Matters Channel at http://www.ec-online.net/legalchannel.htm.

CASEY’S PICKS ON THE WWW: Top Alzheimer’s/Caregiving Websites

ElderCare Online has joined a select consortium of top quality Alzheimer’s Disease/Caregiving websites established by Brenda Parris Sibley. The sites will be ranked monthly based on the number of "votes" (i.e., click thrus) they receive. The list is a great source for other AD/Caregiving websites, especially those created and maintained by other caregivers. You will also find sites produced by professionals, authors and specialized vendors.

If you like ElderCare Online and feel that it is one of the best sites for you, then I encourage you to "vote" for us by clicking on this link (or clicking on the image on the front page each time you visit the site). http://www.topsitelists.com/bestsites/bpsibley/topsites.cgi?ID=31.

  • You may vote once a day per site for a top Alzheimer's/Caregiving Site
  • The top site(s) will be the award winner(s) at the end of each month
  • A total for each site will be kept at the end of each month, and that will be used to determine the award winner(s)for the year.

Brenda Parris Sibley quit graduate school at Florida State and returned to Alabama to care for her mother who had Alzheimer's Disease in 1994. She cared for her until the end of December 1995 when she moved into a nursing home. Her mother died in April 1996. She started her website to share information about Alzheimer’s Disease because she felt that the knowledge is essential to being a good caregiver. Since 1996, she has returned to school and completed her degree. "I have my career now, but I have never regretted the year with my mother."

Brenda’s website: "A Year to Remember with My Mother and Alzheimer’s Disease" http://www.zarcrom.com/users/yeartorem/

CAREGIVER SUPPORT NETWORK: Introducing Discussion Host ZuZu

Our family of mentors and activists is growing. Please welcome Kim Ryan, AKA ZuZu. Zuzu, who joins us from Northern California, cares for her father at home. As an experienced dementia caregiver, she brings ideas and insight to some of the more challenging aspects of caregiving. She is also a very creative and artistic person. ZuZu will be hosting a regular weekly discussion group on Thursday nights in the Elder Caregiving Chatroom.

Visit our other mentors and activists in the Caregiver Support Network. Each maintains personal web pages of tips, poems and articles. Dorothy Womack is an accomplished poet and inspiration to so many caregivers. Jan Allen is a practical day care administrator with years of experience with behavior management and dementia. Susan Grossman had cared for her mother-in-law for years and shares her wisdom and insights. Pauline Sheehan is a writer who helps caregivers take care of themselves. Mary Waggoner is a geriatric specialist in Florida who is an expert at locating resources and understands the complexities of managing care for an elderly loved one.

The Caregiver Support Network includes access to the ElderCare Forum message board, links to the personal pages of our mentors, a directory of mailing list support groups and a link to "Ask Casey" a caregiving question. Visit the Caregiver Support Network at http://www.ec-online.net/Community/Activists/can.htm.

LIVE DISCUSSION GROUPS: Schedule for June

Live discussion groups produced by ElderCare Online are designed to help caregivers overcome isolation, learn new skills, connect with like-minded friends and share their wisdom. Don’t think of them as frivolous "chit chat" sessions. While we may occasionally stray from the topic to have a laugh or catch up with friends, our goal is to make our free time as productive as possible.

All of our hosts are experienced caregivers, professionals or knowledgeable experts. The host’s role is to facilitate a conversation among all of the participants. As an attendee, you might be asked to tell the group about yourself and describe your care situation. The host can then introduce you to others with similar situations and tailor the discussion to meet your needs.

Participants in the discussion groups are asked to be polite. Venting is allowed, but don’t make it a habit to save up your dirty laundry for these groups. Be yourself and ask questions and provide answers or relevant experiences. Experience levels of participants varies greatly – that is a bonus, because new caregivers can learn from others who have had to deal with the same issues.

Frequent participants say that these groups become like a surrogate family if friends and family have drifted away. Many members develop deep friendships that endure online and offline. If you feel alone and isolated, ElderCare Online is one of the few places on the Internet where caregivers like you regularly congregate. You are encouraged to share e-mail addresses, ICQ user names and stay in contact with each other even after the scheduled session ends.

Topics are "highly recommended," but not mandatory – if you have an unrelated challenge and need quick advice, feel free to speak your mind! We try to select themes and topics that stimulate discussion, learning and understanding. From time to time guest speakers and distinguished experts host special sessions. During those special presentations, participants are asked to refrain from personal discussions and follow appropriate netiquette when asking questions.

Aside from regularly scheduled discussion sessions and special presentation, the Elder Caregiving Chat Room is open 24 hours a day, seven days a week. If you are visiting the website, feel free to just drop in. If you usually connect with your friends using ICQ or AOL Instant Messenger, you are welcome to invite them to join you for a group discussion in the chatroom. Just make sure your discussion does not conflict with the regular schedule. If you would like to set up a regular meeting space, e-mail us at roboyoboy@worldnet.att.net to discuss it.

Chat Schedule for June 21 to June 30

June 21 (Wednesday 8:00 to 10:00PM EST) Note the special early time: Special Guest Host Janet Walsh leads a discussion group on the topic of "Discussing the Alzheimer’s Diagnosis With Your Loved One." Caregivers are encouraged to share their experiences and weigh the pros and cons of this difficult subject. Janet is the Chairman and co-founder of the Long Island Alzheimer’s Foundation (New York). She travels widely and speaks on all issues related to the disease.

June 22 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week’s topic is: "Adult Day Care for Dementia Patients."

June 28 (Wednesday 9:00 to 10:00PM EST): "ALZWell Tonight:" Host Susan Grossman leads a self-help group for caregivers on the topic of "The Hard Questions and Decisions." Topics discussed will include feeding tubes, death at home, mortuaries, calling 911, etc.

June 29 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week’s topic is: "Food tips." Share your ideas for making nutritional milkshakes, managing swallowing difficulties and small portions, etc.)"

Transcripts from previous discussion groups are posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm.

If you regularly attend an online support group or host one, please forward information on it to eldercareonline@hotmail.com. If you don’t have a chatroom or website, but are interested in hosting a session on ElderCare Online, please fill out the Community Activist form at http://www.ec-online.net/forms/formactivist.htm.

SUBSCRIPTION INFORMATION

The ElderCare Beacon is published bi-weekly by ElderCare Online. To subscribe to this free newsletter, go to the main page of the website at http://www.ec-online.net and click on the button on the right hand side of the page. Add your e-mail address to the ListBot box and then fill out the basic demographic information. You do not need to include information that you think is too personal. A confirmation e-mail will be sent to you. Please reply to it to complete your subscription.

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