The Caregiver's Beacon Newsletter

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The Caregiver’s Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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March 1, 2002                                                                                 Vol. 5 No. 5
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ALZwell Caregiver Support and ElderCare Online
http://www.alzwell.com and http://www.ec-online.net
Serving the Needs of Caregivers Since 1996
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Dear Friends,

“How do you feel?” Sugarlips asked me last night when I told her that my father was going to begin chemotherapy in a few weeks.

We were in the chatroom with a group of others, and to be honest I stopped for a few minutes before I could actually type, “I don’t know what I am feeling. It doesn’t seem real right now.” It was more of an intellectual exercise than anything for me. Being a disproportionately analytical person, that would seem perfectly normal.

But the fact of the matter is, yes, I am feeling something. But what is that “Something?” No, it’s not Anger or Confusion or Unfairness. What’s the right word… I think it’s Dread. My father and I are very close. We have gotten even closer over the last half a dozen years as I have matured and become more and more independent and adult in every way. Our relationship is mature and friendly. I dread losing that.

Dad was diagnosed with Chronic Lymphocytic Leukemia (CLL) about 3-4 years ago. It’s a progressive, fatal blood and immune disorder that has just reached a critical stage requiring chemotherapy.  I guess the reality began to kick in a week ago when he told me that it was time to start the treatment.

My caregiving journey has been vicarious over the past 5 years: I have bonded and immersed myself in the experience only as an active spectator. Now it’s my turn to assist my mother in the care of my father. And that is where the dread comes in...

  • How will our relationship change (hopefully it will improve)?
  • Will I have to wipe his ass or get puke on my arm (hopefully not too much)?
  • Can my presence there with him an embarrassment or a pillar of strength (I hope the latter)?
  • Is this the beginning of the end (or the end of the beginning)?

You notice that I have listed my emotions with bullet points and in balanced logical format. I guess that’s my way of coping with the uncertainty ahead. Deep down I am analytical and pretty well organized.

The last several years that I have spent working with dementia caregivers (what I call “Extreme Caregiving”) has provided me with at least one insight: that I really am not so overwhelmingly analytical. Many of my online friends have noted my compassion and wisdom (perhaps greater than my years), and the recognition that I will be a pretty decent Assistant Caregiver.

I am not baring my personal issues for sympathy or to finally be able to say, “I am one of you.” I share my experiences for selfish reasons: because this helps me to better understand and cope with my feelings. I just hope that we all have venues to express our feelings (whatever they may be) positively and with genuine support and understanding.

Kind Regards,
Rich O’Boyle, Publisher
ALZwell Caregiver Support
ElderCare Online
Prism Caregiver Education Series 

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INSIDE THIS ISSUE
Feature Article: Promises, Promises
Book Review: Quiet Moments for Caregiver by Betty Free
Alzheimer’s Answers: “Am I Next?: Genetics and Alzheimer’s Disease”
Caregiver Store: “Show Them That We Care” Video and Handbook
Newsletter Briefs: Attention Eldercare Professionals (GCMs, Lawyers, and Social Workers)
Top Alzheimer’s/Caregiving Sites: Carol’s Fishpond
ElderCare Forum: Latest Postings
Chat Schedule: Updates for March
Subscription Information

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FEATURE ARTICLE: Promises, Promises by Mark Edinberg, Ph.D.

While not necessarily legally binding, promises we make to our family members bind us in many ways. Guilt, poor decisions, potentially harmful decisions, and harm to family members can all come out of promises made in the heat of a crisis, at a moment when one is fearing a greater harm to another family member, or even simply made in ignorance of what the promise might entail in the long run. Not making a promise can be difficult and require forethought about the situation. Reworking a promise once made is also an option to handling these dilemmas. Sometimes, we sometimes need a way to rework a promise when the person who extracted the promise from us is no longer able to understand us or has died.

Some common promises made to older relatives are:
o       Promising to "Never put me in a nursing home."
o       Promising never to sell the family business
o       Promising never to sell the family home
o       Promising to "take care of a handicapped or incapacitated relative
o       Promising to continue a family feud (e.g. "Never talk to cousin Ned because of what he did in 1943, and promise me you will never forgive him or his children.")
o       Promising to not take a specific course of action about a stock or investment (e.g. "Never invest my money in banks").

You can read the complete article by Mark at http://www.ec-online.net/Knowledge/Articles/promises.html. It includes a valuable discussion about the reasons for, and consequences of promises that we make. It also gives advice on how to “renegotiate” promises to our loved ones, as well as ways to deal with the guilt we may carry with us.

BOOK REVIEW: Quiet Moments for Caregivers by Betty Free

Too often the strains of caregiving push individuals further away from their loved ones, themselves, and their spiritual centers. Betty Free's book of prayers is designed to bridge the divide and encourage a stronger bond among all those involved.

The prayers are arranged intelligently around themes that confront caregivers daily, as well as over the long term. She encourages us to meditate on love and family, but also change, worries, and fear. Like all experienced caregivers, Betty knows the power of laughter and hope. She appropriately shares her prayers in those areas as well. With over 50 prayers, the book serves as a weekly missal or bedside reading.

Betty Free has been a caregiver for the past 10 years, dealing with issues such as deteriorating physical health, dementia, loss of purpose, and loneliness.

Read the complete review, including two excerpted prayers at http://www.ec-online.net/Knowledge/BookReviews/freequietmoments.htm.

Several new books have been added to the ElderCare Bookstore, including our list of most popular books and some video products. Visit the bookstore at http://www.ec-online.net/Connections/bookstore.htm.

ALZHEIMER’S ANSWERS: “Am I Next?:” Genetics and Alzheimer’s Disease

One of the first questions that comes to mind after a parent is diagnosed with Alzheimer’s Disease is, “Am I next?” It is well documented that some cases of Alzheimer’s Disease are hereditary, and that the disease may strike earlier in one’s life.

With this hot topic on the minds of caregivers, we are presenting a one-hour open question session with a genetics counselor, Jennifer Williamson, from Columbia University’s Taub Institute for Research on Alzheimer’s Disease and the Aging Brain. Ms. Williamson will be able to answer many key questions, such as:

  • How often does hereditary Alzheimer’s Disease occur?
  • What are your chances of developing the disease if one (or both) of your parents were affected by it?
  • What types of options do you have for testing and research?
  • What are the benefits and limitations of genetic testing?
  • What are the consequences of having the knowledge gained from the genetic tests?

This latest installment in our regular “Alzheimer’s Answers” Q&A sessions will be presented live on Monday, March 4 from 1:00pm to 2:00pm EST in our Elder Caregiving chatroom at http://www.ec-online.net/chat.htm. You may submit an advance question to askcasey@ec-online.net if you will be unable to attend. A transcript of the session will be posted to the website shortly after we conclude the chat.

“Alzheimer’s Answers” is our monthly educational series produced in cooperation with the Taub Institute and the Alzheimer Research Forum. The Q&A seminars are for educational purposes only and should not be substituted for professional healthcare consultations. Our goal is to provide family caregivers with access to leading professionals in the field of Alzheimer's research and care. We believe that better-informed caregivers will be able to improve quality of life for themselves and their aging loved ones. You may visit the “Alzheimer’s Answers” homepage at http://www.ec-online.net/Knowledge/SolutionSets/alzanswers.htm for a complete selection of chat transcripts and program information.

CAREGIVER STORE: “Show Them That We Care” Video and Handbook

Very few of us plan to place a loved one in a nursing home... It all happens so suddenly. An injury, an illness, a stroke, or just old age convinces their doctor, and you, that a nursing home is the best place for them. Now you find yourself in a totally new situation...one you have probably never imagined: visiting a nursing home on a regular basis.

The purpose of the video and handbook is to show and explain how to make visits to any nursing home more enjoyable for both you and the one you are visiting.

Topics Covered:

  • Classifications of residents
  • Cautions to be taken
  • Comfort for the resident
  • Companionship
  • Conveniences
  • Cleanliness
  • Courtesy
  • Communication
  • Common sense

Ron and Susan Stauffer are the owners of Stauffer Video Services, Inc., and are both caregivers. Susan has been a caregiver to her Downs Syndrome daughter for over 30 years and works part time for the Franklin County Program for the Mentally Retarded. Ron is a caregiver to their daughter and has also spent 5 years caring for his parents who were residents in a nursing home.

The video is 26 minutes long, and the handbook is 40 pages long. It is available from ElderCare Online for $24.95 + $4.00 S&H in our online store at http://www.ec-online.net/Store/media.htm. All purchases of the video/handbook product include free access to our online tutorial “Choosing a Nursing Home."

NEWSLETTER BRIEFS: Attention Eldercare Professionals (GCMs, Lawyers, and Social Workers)

I encourage all of you to sign up for some of our newsletter briefs. We will be launching them in March and April of 2002. Each will be short and sweet. I plan to experiment with HTML so you can expect some attractive graphics and layout (unlike this newsletter). All you need to do is click on the special link at the very bottom of this newsletter, personalize your profile, and select the appropriate newsletter briefs.

If you received this newsletter from a friend, are reading the digest on another website, or are visiting the copy posted to the ElderCare Online/ALZwell website, then you will need to actually subscribe to the Caregiver’s Beacon. Go to our sign up page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm and add your e-mail address.

Our “News Briefs” will be short one or two page long e-mails that focus on specific topics of interest, including an article, resource links, tips, and recommended readings. At first, we will launch five new Briefs on the following topics:

- Alzheimer’s Disease
- Caring for Aging Parents
- New Caregivers
- Professional Caregiver
- Former Caregiver

Of note is the News Brief for Professional Caregivers. This Brief is being developed with the special interests of geriatric care managers, facility-based professionals, elder lawyers, or non-profit organizations in mind. It will include relevant topics, book recommendations, and resource lists. I am an active member board member of the Greater New York Chapter of the National Association of Professional Geriatric Care Managers as well as the American Society on Aging. I regularly attend (and speak at) professional conferences so I will bring those insights to the Professional Caregiver News Brief. 

As I mentioned, each subscription is free and optional. To sign up, follow the link at the very bottom of this newsletter. BE CAREFUL: The link is customized just for your e-mail address. By following the link, you will have the option to UNSUBSCRIBE from this newsletter. DO NOT actually unsubscribe. Instead, follow the instructions for completing your member profile. You will be asked to provide some basic demographic information, as well as select the “Interest Groups” of your choice. Only provide as much information as you feel comfortable with.

We have the utmost respect for your privacy, and we pride ourselves on our integrity as a business. We do not rent our mailing list or otherwise provide it to outsiders. From time to time you may see paid advertisements in this newsletter and the News Briefs (just like newspaper advertising). We never reveal your name, e-mail address or personal information. For more information, see our Privacy Policy at http://www.ec-online.net/about/privacy.html.

Remember, use the ListBuilder link at the very bottom of this newsletter near the copyright 2002 information. And DO NOT unsubscribe (unless you REALLY want to).

TOP ALZHEIMER’S/CAREGIVING SITES: Carol’s Fishpond

Yes, many caregivers have real lives, hobbies, and interests outside of helping their aging loved ones. I’m highlighting Carol’s website this issue because she is both an active member of ElderCare Online’s community, and maintains interesting hobbies.

You can’t help but smile when you see pictures of Carol’s fishpond. I thought at first that Carol called her website “The Fishpond” out of creative license. But she really is a dedicated fishpond architect. As with all true hobbies, they seem to take on a life of their own, much like her fishpond has. You can read about her gradual immersion (no pun intended) in the art and craft of building and nurturing her own fishpond. Carol also is an avid cook and stitcher of purses. She shares plenty of pictures of her work.

I like the collection of photographs of Carol’s online friends. It’s nice to connect some faces with the names of many of our chat and message board members. It’s funny that we often imagine or envision people looking totally different than they do in reality. For some reason, I carried around a picture in my mind of everyone looking somewhat like Bette White or the rest of the crew from the Golden Girls, or (gasp!) Norman Fell (Mr. Roper from the old Three’s Company sitcom). I’m happy to report that I have been mistaken.

Pay a visit to Carol’s Fishpond for a brief respite and meet many of our online support group members at http://www.angelfire.com/ak2/carolwhite/

For additional Alzheimer’s and Caregiving websites, Brenda Parris Sibley has established one of the best clearinghouses on the Internet. She has contacted and worked with a variety of websites to collect them into a directory with rankings showing which are the most popular. Brenda and the other webmasters and webmistresses have done an excellent job of creating unique and compelling sites that speak directly to family caregivers. In each issue of this newsletter, we will mention one of the many sites that comprise the Top AD/Caregiving Sites List.

You can browse through other sites and vote for ElderCare Online by clicking on the "Top AD/Caregiving Sites" icon on the front page of ElderCare Online at http://www.ec-online.net (or following this complicated link: http://new.topsitelists.com/topsites.cgi?ID=1&user=bpsibley&area=bests.) You are welcome to use ElderCare Online as your portal to access these sites, since I know that you will want to visit again and again. I suggest that you access the list often as new sites are added regularly, and as you explore the list, you are bound to find one that didn't catch your attention last time.

ELDERCARE FORUM: Latest Postings

Recently I have seen an uptick in the amount of tense postings in the Forum. Most of us are stressed out for one reason or another. Please be careful about venting against each other. We all have individual opinions and perspectives, and they are all valid. It’s painful to see the venting directed at individuals rather than the disease.

I want to ask everyone to be more open to other’s perspectives. Share your opinions and vent when necessary. But please be understanding that everyone’s journey is different. You may not agree with everyone, but you can empathize with them and see where they are coming from.

If you would like to register, please follow this link: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=agree. Please excuse any little error messages that you may receive. We are working to resolve a software glitch. I will manually send your registration information and password. Just fill out the information and wait. I will get it to you in less than a day (probably within 15 minutes).

(Note: Some of these links may not transfer correctly via e-mail. In that case, just go to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi or read this newsletter off of the website at http://www.ec-online.net/Knowledge/Newsletters/beacon021502.htm).

We Laugh to Survive: Jokes posted by our members. Be careful, some of these are really dumb or really racy… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=21

About Our Community: Who Helps the Moderators?: Learn a little more about the individuals who help to keep the website and support groups up and running at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=30&t=000036

News and Research: Two very important studies were recently announced that are giving researchers a better understanding of the mechanisms and risk factors of Alzheimer’s Disease… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26

Daily Challenges: New Caregiving PC Neophyte Reaching Out: Welcome new member Joan Marie who is caring for her husband who has been newly diagnosed with Alzheimer’s Disease. I think her first post is a good inspiration to many of you who have been lurking. Jump right in and join us… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000188

Early Onset Alzheimer’s Disease: Spousal Caregivers Meeting Room: You don’t have to be coping with Early Onset Alzheimer’s Disease to appreciate the tight friendships and support that our members share here. The issues that spouses face are different from those of adult children, so we carved out a place just for them at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000064.

Homecare & Independent Living: Chemotherapy: I have a personal request here. My father will begin chemotherapy for leukemia in the next few weeks. I would like some feedback from our members who have had experience dealing with chemo-caregiving. I will be assisting my mother, who will bear the brunt of it. Please help us to learn the ropes as quickly as possible… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=3&t=000045

We have literally hundreds of other discussions going on in the Forum. Please come by to browse and read. We cover so many of the issues that all caregivers encounter. Just reading the stories and comments can help you learn. If you have specific questions or feel that you need the support of others just like you, please sign up and join us. Visit the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi.

CHAT SCHEDULE: Updates for March

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm. All times are U.S. Eastern Standard Time (GMT –5). We have begun to provide chats that are hosted by caregivers in Australia. Australian times are GMT +10. Hopefully this will not cause a great deal of confusion and instead give us more opportunities to connect with each other.

Topics are suggested and NOT required. We always focus on the issues and that our members want to discuss. Please remember that we have a new chatroom. If you had trouble using the old one, please give it another try! Please note the new sessions added on Monday evenings, Wednesday mornings, and Saturday afternoons.

Our current chat schedule is posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm as well as at the end of this newsletter.

March 4 (Monday 1:00 to 2:00PM EST) “Alzheimer’s Answers:” Guest Expert Jennifer Williamson from the Taub Institute at Columbia University responds to questions on the topic of “Am I Next?: Genetics and Alzheimer’s Disease.”

March 4 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 5 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

March 6 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

March 6 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 6 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia."

March 7 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 9 (Saturday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 11 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 13 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

March 13 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 13 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 14 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 16 (Saturday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 18 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 19 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

March 20 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

March 20 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 20 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 21 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 23 (Saturday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 25 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 27 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

March 27 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 27 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 28 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 30 (Saturday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm.

SUBSCRIPTION INFORMATION

The Caregiver’s Beacon is published bimonthly by ElderCare Online and ALZwell Caregiver Support. To subscribe to this free newsletter, visit the subscription information page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm.

You may also go to the main page of the website at http://www.ec-online.net or http://www.alzwell.com and add your e-mail address to the white box and click on the "Subscribe" button (just one click!).

To unsubscribe from this list, follow the customized link that is provided below by our ListBuilder software. You may also customize your profile and sign up for additional monthly News Briefs on special topics.

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