ElderCare Beacon Newsletter

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ElderCare Beacon
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May 1, 2000                                                                              Vol. 3, No. 8
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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,

Mother’s Day is a bittersweet holiday for so many of ElderCare Online’s members. Those of you caring for your aging mothers or mothers-in-law see dementia robbing so many of them of their memories and personalities. You may grieve the loss of your close mother-daughter bond or the bond between a son caring for his mother or a husband caring for the mother of their children.

Throughout the journey of caregiving, you will face many challenges – and preserving this close bond in the face of such painful adversity is one of the hardest. I invite you all to share your pain, joys and reflections in the ElderCare Forum. I have prepared a special "Mother’s Day Memories" section for you to honor your mothers, wives and other female care recipients (http://www.ec-online.net/cgi-bin/ubb/Ultimate.cgi?action=intro).

I have included here a short poem by Mentor and poet, Dorothy Womack. Dorothy always has such an insightful and warm way with words.

The Cycle of Life, by Dorothy Womack

Everytime my mother puts her hand on my face, it feels like she is touching my heart. There are times, as I watch my mother asleep in her bed, that I long to curl up beside her, hold her tight and put both her hands in mine – attempting to offer both of us some semblance of safety and security.

But I realize that were I to fall asleep and then awaken, I would still be here upon this earth – while my mother would awaken in Heaven. I would know that I could not hold her here, nor could she take me there. Our bodies would be touching, but our spirits would be separated by death. Perhaps this is what is meant by "One will be taken – the other left". For the one who is taken actually takes their essence with them – and the one who is left behind wonders how and when they will ever see that loved one again.

For although separated by death, we are united in Love – and throughout it all, the love remains. The questions are never erased, but then neither are the memories. Such is the cycle of life. By Dorothy Womack.

Many blessings to you this Mother’s Day.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum Update: Daily Motivations
The Caregiving Journey: Member Thanks
Caregiving Advice Needed: Inappropriate Toileting
Ask Casey: How Do I Apply for Medicaid?
Casey’s Top Picks on the WWW
Feature Article: Managing Problem Behaviors
Caregiver Support Network: New Mentor and Updates
May Chat Schedule Update: ElderCare Answers and ALZwell Tonight
Subscription Information

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ELDERCARE FORUM UPDATE: Daily Motivations

Start each day with a positive statement! I have just started a new feature in the Affirmation and Inspiration channel – Daily Motivations from Motivating Mentor. Each day we will add a new positive comment for you to think about during the day. The topics focus on achieving success and managing stress.

I have offered to reward three active caregivers for their participation with special gifts. The offer still stands: The first three caregivers who post 10 or more topics or responses will receive a complimentary gift worth $30. This goes to show that being a good citizen and sharing your time, wisdom and expertise is rewarded on ElderCare Online. So far there are two caregivers (diamondflo and sharyn smith) who are about half-way to the prize.

We are rewarding five caregivers with a copy of Beth Witrogen McLeod’s widely recognized book, "Caregiving: The Spiritual Journey of Love, Loss and Renewal" as rewards for participating in our community discussion board:

  • Dee, Green Lane, PA
  • Yah11, Fort Deposit,AL
  • Mjs, Bloomington, IN
  • Norma T. Huntsville, AL
  • Mina, LaMirada,CA

I want to also recognize three new subscribers to this newsletter. Each will receive a copy of Beth’s book as well:

  • Donald G., Mainville, OH
  • Terry K., Newport, MI
  • Coleen R., Midlothian, TX

Let’s do it again! I am again offering free caregiving books to five caregivers who register and post a minimum of one discussion topic before the end of May. You will have a choice from the new edition of Joy Loverde’s "The Complete Eldercare Planner," Barbara Bridges’ "Therapeutic Caregiving" and Beth Witrogen McLeod’s "Caregiving: The Spiritual Journey of Love, Loss and Renewal."

CAREGIVING ADVICE NEEDED: Inappropriate Toileting

We need your help! One member is in great need of advice on how to deal with her mother’s toileting problem. Those of us who have dealt with a loved one inappropriately defecating have often been at our wit’s end. The behavior is disgusting, illogical and unpredictable. So how does one keep one’s cool and "go on day by day" when this is so awful?

I have heard so many stories where inability to cope with incontinence and inappropriate toileting have overstressed a caregiver or forced a loved one into a care facility.

I have reprinted mjs’s original posting here:

Bathroom Disfunction (May 6, 2000)

"I take care of my parents in their home. They are 94 and 85. My mother has been suffering from senile dementia for a good many years now, and I just discovered this morning that she has taken to pooping in the garage. This is very disturbing to me, particularly as she picks it up in her bare hands, and then does not wash. She is very intractable, and very defensive and hostile, and allowed me to wash her hands with a damp cloth, but would not come to the sink for a proper cleaning. Has anyone encountered this behavior before? Does anyone know what it stems from?"

Please go to the ElderCare Forum’s section on Alzheimer’s & Dementia Care to post your practical suggestions, support and advice. Remember, your contributions can make a huge difference in the quality of life for other caregivers just like you. And we are prepared to reward you for your participation: Each respondent who provides assistance will receive a copy of one of our top caregiving books.

THE CAREGIVING JOURNEY: Member Thanks

I wanted to share this letter with all of you. Every so often I receive correspondence from members – some to unsubscribe from this newsletter because their loved one has passed away or to thank us for providing support and nurturing them. This letter is important to me because Joan has reinforced in me the value of this free service that we provide.

"Kudos to you for the help and comfort you continue to offer the multitude of caregivers. I contacted you some time ago when I was caring for my husband who was afflicted with Progressive Supranuclear Palsy. We took part in a forum chat one night; I recall my surprise and gratitude at the level of participants you had involved. You asked me to share my experiences with PSP.

"Unfortunately, Harry's condition deteriorated rapidly and he died in June of 99. It is only recently that I am beginning to "come up for air." I'm taking it "one day at a time", and find those days getting a little easier as time progresses. The strangest feeling is that of not being responsible for another; there are "no bells to answer", which is both a relief and an adjustment.

"However, I want you to know how much your site means to so many people. It was reassuring to realize that you are not alone in your desperate attempt to care for a loved one. Thank You." Joan E., Santa Fe, N.M.

ASK CASEY: How Do I Apply For Medicaid?

This question from a member in New York is probably on the minds of many of you: How does one apply for Medicaid? Casey replied with a basic overview of the options available given the writer’s specific request.

Dear Casey,
My mother is 91 years old and failing quickly. She is still somewhat ambulatory, but has great difficulty doing most anything. I want to apply for Medicaid, because she has no assets with the exception of Social Security and Medicare Part A&B. I fear that very shortly she is going to need either home care or placement into a nursing home. I was told to see someone to help me through the maze of paperwork. Should I see someone a pay a fee, or should I try to do it myself? Thank you for any help you can render. Joseph K., Shirley, NY

Dear Joseph,
Thanks for contacting ElderCare Online. Depending on your own competencies and available time, you may consider filing for Medicaid on your own. However, if your mother's finances are complex, large or difficult for you to manage, consult a qualified professional like an elder lawyer or geriatric care manager.

You can find a lawyer specialized in elder issues from the National Academy of Elder Law Attorneys at http://www.neala.org. You might also want to consult with a geriatric care manager who can help you manage your mother's care, interview and select home care assistance and provide information and referrals. A directory of geriatric care managers is located at http://www.caremanager.org. Neither of these two options are inexpensive.

If you have the time and inclination, you can research Medicaid rules, eligibility and contact the state Medicaid office through ElderCare Online. We recently added several background articles on medical benefits and eligibility to the Insurance Coverage Channel. You can contact the state
Medicaid office through the New York Neighborhood Network (within the Community Center directly off the front page).

Kind Regards,
Casey

When sending Casey a question, please note that we are unable to answer medical or legal requests because state laws prohibit us from practicing these professional disciplines. When you send in a question, please be sure to provide your name, city/county/state, and pertinent information on your loved one’s condition. Never send a question by e-mail if it is time sensitive or an emergency. We reserve the right to publish your question and the response to help caregivers with similar questions.

CASEY’S TOP PICKS ON THE WWW

Each Channel now has a place for a special set of weblinks that focus on the personal and practical needs of caregivers. When selecting a site as a "Top Pick on the World Wide Web," we look for sites that go to the heart of the caregiving challenge. We look for personal stories, practical suggestions and nurturing support. If you have a site that you think should be included, please forward a link, description and comments to us at eldercareonline@hotmail.com.

FEATURE ARTICLES: Alzheimer’s & Dementia Care Channel Enhanced

We have enhanced the most popular channel on the site with a better organization of the numerous articles as well as the addition of some new ones. The channel now includes a section on the stages of Alzheimer’s. We will continue to add more articles, tools and booklets.

Managing Problem Behaviors: All caregivers to a loved one with Alzheimer’s Disease or related dementia know the challenges of coping with illogical and problematic behaviors. This article covers tips that help you understand the root cause of these behaviors and techniques to help you manage them.

Family Issues: While you may be the primary caregiver (or ONLY caregiver), there are still others involved in your family circle. This article addresses the many unwelcome issues that families face. Over time, we will be addressing the top problems with detailed solutions and tips.

Early Stage Alzheimer’s Disease: This is the first of three core articles on early, middle and late stage Alzheimer’s Disease. Each includes possible behavior problems, solutions and communication tips.

All articles appear in the Alzheimer’s & Dementia Care Channel at http://www.ec-online.net/alzchannel.htm.

CAREGIVER SUPPORT NETWORK: New Mentor and Updates

I would like to welcome our newest Mentor to the ElderCare Online family. Susan Grossman is an experienced caregiver who cared full-time for her mother-in-law through her battle with Alzheimer’s Disease.

She started one of the Internet’s first online support and informational websites for Alzheimer’s caregivers – ALZwell (http://www.alzwell.com). From this small start it has grown quite large over the years and even now that her mother-in-law has passed on, she is still maintaining the site, keeping up with the disease and answering hundreds of letters a week. Her personal pages on ElderCare Online provide practical ideas and outlets for caregivers to loved ones with Alzheimer's Disease. She will also be hosting a series of online self-help groups called "ALZwell Tonight." Check the chat schedule below for details.

You can access Susan’s personal pages in the Caregiver Support Network at http://www.ec-online.net/Community/Activists/can.htm.

Dorothy Womack, another ElderCare Online Mentor, continues her prolific writing. She has added several poems and stories to her personal pages. In particular, I have highlighted "The Cycle of Life" as a Mother’s Day Feature in my welcoming letter.

Dorothy is also the facilitator of a new e-mail discussion group, INNERQUEST. INNERQUEST seeks to promote emotional and spiritual support for you, as the caregiver – perhaps to enlighten you to a greater understanding of yourself as well as your loved one. Its purpose is to ultimately raise the awareness of the caregiver to help the patient or loved one understand the spiritual and emotional needs of their loved ones, especially when their time on earth is coming to a close. You can subscribe to the list directly from Dorothy’s personal pages in the Caregiver Support Network.

MAY CHAT SCHEDULE UPDATE

This month we are beginning a new series of moderated self-help sessions: ALZwell Tonight, hosted by ElderCare Online Mentor Susan Grossman. I will continue to host the popular ElderCare Answers sessions for new caregivers.

"ElderCare Answers," Wednesday, May 10 from 9PM to 11PM EST. Host Rich O’Boyle will be online to help steer new caregivers to resources and information. The sessions often focus on dementia care, but please bring your questions on legal & financial matters, care management and local resources.

"ALZWell Tonight" with host Susan Grossman. Both sessions are from 9PM to 10PM EST
Thursday, May 11: Being Prepared: Caring for a Loved One with Alzheimer’s Disease
Thursday, May 25: Caregiver Guilt

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

The World Wide Chat Guide ™ is now included as part of the Caregiver Support Network. Please visit http://www.ec-online.net/Community/Activists/can.htm to visit the growing list of elder caregiving chats on the World Wide Web. The World Wide Chat Guide includes links to chat sessions hosted by ElderCare Online, eldersearch.com, Dr. Koop, WebMD and other eldercare websites.

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.

To unsubscribe from this list, simply (1) reply to this email message with the word "UNSUBSCRIBE" in the Subject: line, and (2) include your e-mail address in the body of the message. Many e-mail programs do not put your complete name@ISP.com in the To: line, so it is impossible to track down your address.

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