ElderCare Beacon Newsletter

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ElderCare Beacon
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July 20, 2000                                                                                                 Vol. 3, No. 13
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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,

I promised a shortened newsletter, but I have learned so much from the World Alzheimer’s Congress in Washington, D.C. that I will include some updates in this and future issues. While the reports on research advances are particularly uplifting, the insight gained from professionals and other family caregivers on day-to-day caregiving has the most immediate impact for us.

Each of the items in this issue includes input from the conference. In particular, you will find very practical knowledge on managing agitation behaviors, wandering and discussing the diagnosis with your loved one. Let me know if there are other behavior management articles that you would like to see. A full newsletter will mail on August 1.

You are invited to attend our upcoming discussion groups on "Difficult Decisions" and "Promises, Promises." Each of these sessions promises to be insightful and informative. (That’s a promise I will keep!) Our hosts have plenty of experience dealing with these issues as family caregivers or professional advisors. Take the time to drop by these discussions – they are informal and you don’t have to be chatty. Sometimes it is best to sit back and listen since most relevant topics are raised sooner or later.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

Hot Topic: Discussing the Diagnosis with Your Loved One
Feature Article: Management of Agitation Behavior
Caregiving Tip: Sleep Modification to Reduce Wandering
Member News: Respite Rewards™ Recipients for June
Live Discussion Groups: Schedule for July
Subscription Information

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HOT TOPIC: Discussing the Diagnosis with Your Loved One

Over the past month we had a fairly active discussion in the ElderCare Forum on "Discussing the Alzheimer’s Diagnosis with Your Loved One." We had the participation of several people, including Amy16 and our Alzheimer’s moderator, Barbara Bridges. I (Casey) posted some resources and an update from the World Alzheimer’s Congress in Washington.

In the future, I hope that you folks will add to the discussion a bit more. Amy16 will receive a complimentary annual Gold membership to AgelessCare’s 24-hour nurse service as my special thanks for being such an active member of our community. AgelessCare’s service is a homerun for stressed family caregivers. It provides you with access to medical expertise by telephone and online. It really compliments the practical caregiving knowledge that we offer on ElderCare Online. Click here to find out more about AgelessCare and enter a contest to win a free membership.

In coming months we will be making the Hot Topics a more important feature. We will add a real-time chat session on the topic, more new articles, a discussion thread moderator and book reviews. Previous Hot Topics will remain in the ElderCare Forum, and you can continue to post your comments and ideas. Remember, each month we will choose a participant to receive a complimentary award for participation.

Preview: The Hot Topic for August is "Talking With Your Aging Parents."

FEATURE ARTICLE: Management of Agitation Behavior

One of the greatest impacts on quality of life for families and their loved ones with Alzheimer’s Disease is the presence of agitation behavior in the middle stages of the disease process. More than half of patients with Alzheimer’s Disease exhibit some type of "agitation" behavior over the course of a year. Experienced caregivers know what I am talking about: screaming, pacing, wandering, hitting, repeated questions and on and on.

"Management of Agitation Behavior," the most recent addition to ElderCare Online’s extensive library of practical articles, includes an informative discussion of the types of behaviors you may encounter in the middle stages of the disease; keys to understanding the sources and "triggers" of the behaviors; descriptions of some of the more typical behaviors; and suggestions on how to manage them while maintaining your loved one’s dignity – and your sanity.

Rich O’Boyle, ElderCare Online’s founder and community coordinator, wrote this article based on presentations by knowledgeable experts, interviews with caregivers and insight from ElderCare Online members. It is one of our reports from the recent World Alzheimer’s Congress in Washington, D.C. Many of you will recognize one name in the list of sources: Geri Hall, a guru on the Washington University at St. Louis’s Alzheimer’s discussion list. It was great to finally meet Geri in person and incorporate her extensive knowledge of the subject into this article.

You can access this article and other articles on behavior management for dementia patients in ElderCare Online’s Alzheimer’s & Dementia Care Channel at http://www.ec-online.net/alzchannel.htm.

CAREGIVING TIP: Sleep Modification to Reduce Wandering

No caregiver to a person with dementia can keep their eye on their loved one at all times. To try to do this invites excessive stress and a futile attempt to be Superwoman or Superman. A loved one’s attempts to get out of the house, follow others or constant walking and movement (all forms of wandering) can raise concerns about getting lost or happening across unsafe situations (i.e., falling or walking into a busy road).

"Wandering" is a behavior that many Alzheimer’s patients exhibit. Usually it is caused by physical illness, depression or sleep disturbances, according to experts. If you and a trusted healthcare professional have ruled out pain, old injuries, infections or depression, then you should consider your loved one’s "sleep hygiene" and sleep patterns as a possible source of wandering behavior.

Sleep modification and proper "sleep hygiene" can greatly reduce wandering and minimize the use of prescription drugs (which contribute to overmedication). Medications are used as a last resort to treat dangerous wandering behaviors.

Good sleep hygiene includes:

  • staying in brightly lit areas during waking hours so the body isn’t tricked into wanting to go to sleep;
  • scheduling regular light naps and quiet periods during the day;
  • sleeping in a dark, quiet room at night; and
  • using a white noise machine to reduce outside disturbances.

Possible sleep modifications include:

  • having a regular routine of activity that includes exercise and restful periods;
  • avoiding or eliminating caffeine and alcohol;
  • going to bed about three hours after sunset – that means as late as 11:00PM in the summer;
  • having high-fat or high-protein snacks (yogurt, milk, ice cream) late at night rather than high-carbohydrate snacks (crackers, juice, fruit, breads, sugars); and
  • reducing activity as the day and evening progress.

In all cases, make the environment as safe as possible by:

  • providing outlets for safe and constructive activities and exercise;
  • safeguarding dangerous household products and medicines;
  • securing some doors with childproof locks;
  • softening floors to minimize injury in the event of falls;
  • joining the Alzheimer’s Association’s Safe Return program; and
  • installing alarms and monitors.

ElderCare Online reprints three informative articles on Wandering by home modifications expert Mark L. Warner in the Home Care & Independent Living Channel at http://www.ec-online.net/homechannel.htm.

MEMBER NEWS: Respite Rewards™ Recipients for June

Each month ElderCare Online recognizes new members and active participants for their contribution to our online community. I like to give copies of useful caregiving books that compliment the practical caregiving information found on this site. Many of these book authors have participated in chat sessions and discussion groups on this site: Barbara Bridges, Joy Loverde and Beth Witrogen McLeod to name a few.

I encourage each of you to get more active in our community. Don’t think of it as a contest or a lottery – it is a way of sharing your wisdom, insight and challenges with other people just like you so they can improve quality of life for themselves and their aging loved ones. You also benefit when they participate. We provide these "Respite Rewards"™ as a way of recognizing the time and effort that you put into our community.

I want to thank the following Respite Reward recipients for the month of June:

Hot Topic Participant:
Amy16 will receive an annual Gold membership to AgelessCare’s 24-hour telephone nurse service and discount healthcare card.

Newsletter Subscribers:
Kay R., Columbus, GA; Letha S. KS; and Pat Z. Redstone, CO

Forum Registrants:
GailN; Jan; and Bernice

Newsletter subscribers and Forum registrants will receive their choice of one of the following caregiving books with our compliments:

"The Complete ElderCare Planner" by Joy Loverde
"Therapeutic Caregiving" by Barbara Bridges
"Caregiving: The Spiritual Journey of Love, Loss and Renewal" by Beth Witrogen McLeod

Check out our comprehensive ElderCare Bookstore of more than 250 caregiving titles.

LIVE DISCUSSION GROUPS: Schedule for July

I would like to invite all of you to attend the last discussion group session for the month of July. End-of-life issues tend to be quite popular. It is a good idea to spend a bit of time thinking about these issues well before they arise. Too frequently we are in denial about the severity of our loved one’s condition, or we "hold on" so tight that we place them in medical situations that are inhumane or unnecessarily painful.

July 26 (Wednesday 9:00PM to 11:00PM 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 and calling 911, among others.

Preview for August:

As part of our Hot Topic for August, "Talking With Your Aging Parents," we will feature a live discussion with family counseling expert and ElderCare Online Contributing Editor, Mark Edinberg, PhD. Mark will be online to talk about the promises that we sometimes make to our loved ones regarding their healthcare decisions, family issues or end-of-life requests. How many of you have promised "never to put your loved one in a nursing home" and then were faced with the tough decision?

While Mark can not provide counseling advice to your specific family situations, he will discuss tools, approaches and insights that can help you make your own decisions. He can use your questions as examples and case studies. We will try to stay on this topic – it is sure to be lively. But if you have other questions or issues on "family dynamics" in general, bring them along. Read more about Mark and his practical articles in ElderCare Online’s Home Care & Independent Living Channel at http://www.ec-online.net/homechannel.htm.

August 2 (Wednesday 9:00PM to 11:00PM EST) "Promises, Promises:" Mark Edinberg, PhD hosts a discussion group on the challenging topic of making and keeping promises to aging loved ones. This is particularly relevant to caregivers to loved ones with Alzheimer’s Disease since dementia is such a "wild card" that produces so many unanticipated stresses. Mark will also be able to discuss general topics related to "talking with your aging parents."

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 or contact me directly at eldercareonline@hotmail.com.

SUBSCRIPTION INFORMATION

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