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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April 15, 2002                                                                                 Vol. 5 No. 8
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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,

Every month I receive several dozen e-mail questions and suggestions. A few themes pop up repeatedly, among them, “Is there government funding to pay family caregivers?” or more generally, “How can I access free programs and services for me and my loved one?” The hardest thing about these types of questions is that the answers are so personalized and vary depending on the particular state or county in which you live. Most programs require very personal financial information as part of the application process.

Over a year ago I reported on a new online technology tool developed and managed by the National Council on the Aging, and funded by several leading aging advocacy groups. The BenefitsCheckUp is the nation's first 50-state (including the District of Columbia) online service to provide public benefit screening. It was developed to address a concerning problem: millions of older adults are eligible for benefits, but not receiving them. Ranging from health coverage to supplemental income to help in paying utility bills, there are millions of older adults who could benefit from a wide array of public programs if they knew about them and how to apply for them.

The National Council on the Aging created BenefitsCheckUp (http://www.benefitscheckup.org) to help older adults to quickly identify programs that may improve the quality of their lives. Family and friends can also obtain facts about benefits that their loved ones may qualify for. Chances are, you will be surprised to learn what benefits are available to you, regardless of your income.

By April of this year, an estimated half million people have used it. Of those who took the time to answer the questions, many found that they were eligible for government programs that they had not known they were entitled to, including:

  • 38% qualified for weatherization benefits
  • 26% qualified for food stamps
  • 26% qualified for energy assistance
  • 18% qualified for state veterans benefits
  • 17% qualified for Medicaid
  • 13% qualified for health insurance counseling
  • 7% qualified for Supplemental Security Income

Here's how it works: You take 10 or 15 minutes to enter information about your financial situation into an online questionnaire. Then, BenefitsCheckUp explains what benefit programs you may be eligible for and how to apply for them. BenefitsCheckUp is completely confidential. It does not require your name, address, phone number, Social Security Number, or other information that could be used to identify you. You enter simple information, such as your age, income, and ZIP code, and BenefitsCheckUp identifies programs you might qualify for. You can then contact each of the benefit administrators for more information about the specific programs.

The questionnaire is easier to fill out if you have the following information handy:

  • Date of birth for self, spouse, or loved one
  • State and ZIP Code
  • Type of residence (house, apartment, or mobile home)
  • Length of time in current residence
  • Veteran status for self, spouse, or loved one
  • Employment history (specifically, whether or not the person ever worked for the state, local, county, or federal government or the railroads) for self, spouse, or loved one
  • Current income and assets from all sources for self, spouse, loved one, and others in the household
  • Estimates of current expenses (such as mortgage/rent, utilities, out-of-pocket medical bills, expenses for caring for someone at home while you work or go to school, etc.)

I recommend that every single family caregiver invest 15 minutes of his or her time to carefully complete this questionnaire. There is no cost. The potential to find additional benefits is very high. You may already be paying your hard-earned money on services that the government is willing to pay for. And that translates into cash back into your pocket.

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

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INSIDE THIS ISSUE

Feature Article: When Your Loved One Resists Care by Rich O’Boyle
My Parents, Myself: A Monthly Column by Phyllis Kramer Hirschkop
Caregiver Store: Coping With Alzheimer’s Disease: Revised and Expanded Edition
ElderCare Answers: “Family Dynamics” with Guest Host Phyllis Kramer Hirschkop
News You Can Use: Medicare Coverage for Dementia Patients
ElderCare Forum: Latest Postings
Chat Schedule: Updates for April
Subscription Information

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FEATURE ARTICLE: When Your Loved One Resists Care by Rich O’Boyle

How many times has your mother refused to change her clothes? Has your father resisted getting out of bed? Has your wife pushed you away when you tried to brush her teeth? Many times a caregiver will be particularly frustrated by her loved one’s refusal to help himself. At times she can’t help but think that the person she cares for "36 hours a day" is going out of his way to make her miserable! The increasing irrationality of individuals with dementia makes it even harder on the caregiver.

Individuals who resist care and assistance are trying to communicate to you. If dementia, stroke, vision loss, hearing loss or other illness limits one’s ability to speak and convey information effectively, body language and physical actions take on a greater role in communication. Refusal to accept care, physical contact or participation in an activity is the individual’s way of telling you something.

You can read the complete article, which contains practical tips and suggestions on how to move beyond the resistance at http://www.ec-online.net/Knowledge/Articles/resistance.html.

MY PARENTS, MYSELF: A Monthly Column by Phyllis Kramer Hirschkop

Dear Phyllis: My sister is causing my family serious problems. Though she and I have never gotten along, our mother now has early stage Alzheimer’s Disease, and we’ve got to make plans for her care. The problem is that my sister’s anger with me makes it hard for her to focus on our mother’s problem.

She’s also angry with our mother for abandoning us when we were very little. It wasn’t until we were adults that mother reappeared in our lives. But my sister still won’t have anything to do with her. What should I do? Susan R.

Dear Susan: It’s no wonder you’re frustrated. I can well imagine that you, too, have mixed feelings about having to help your mother. I would guess that your mother’s new needs have fanned the flames of resentment in your sister toward her and, apparently, toward you.

Since the two of you haven’t gotten along well over the years, it makes trying to deal with such a charged problem a daunting challenge. The first thing I’d do is to talk to your sister about trying to set aside your differences with each other. For example, you might acknowledge that you know that the two of you have had your difficulties over the years. If you have some ideas about why this is and can express them without blaming her, then you might want to talk about the issues that separate you and ask her to do the same.

I think it’s also a good idea to let her know that you understand why she hasn’t wanted to see your mother in recent years because you have some of the same negative feelings toward your mother. By letting her know that you both have some similar feelings, you’re demonstrating an attempt to be on her side and not her adversary.

This may take a series of conversations, which could be the beginning of a better mutual understanding of each of you and, at a minimum, lead to a temporary setting aside of your differences. If you can’t set them aside, at least long enough to make some decisions about your mother’s care, then you may need to seek help from a professional who specializes in working with family relationships. This person can act as a facilitator to help the two of you make some needed decisions.

It is a general rule, rather than an exception, that when there have been many years of tension among siblings, a major event, such as a life decision needing to be made about a parent will intensify existing animosity. This is further exacerbated in your case because of the feelings about your mother’s absence in your earlier years. The important thing is to try to turn frustration into productivity by working with your sister, with help if necessary, to make the needed decisions for your mother’s care. Phyllis.

Phyllis Kramer Hirschkop is a trained social worker who has practiced as a psychotherapist for 26 years. She has also received training in coaching. Over the past few years, she has focused her practice on working with adult children with elderly parents and the problems that arise as the parents become more and more needy. If you have a question you'd like answered, please e-mail Phyllis at hirschkop@erols.com and perhaps she'll choose your letter to respond to in the next newsletter. Her website is located at http://www.our-aging-parents.com.

2002 Phyllis Kramer Hirschkop. Reprinted With Permission.

CAREGIVER STORE: Coping With Alzheimer’s Disease: Revised and Expanded Edition

We have revised and updated our popular “Coping With Alzheimer’s Disease” Learning Resource Guide. This printed booklet is now available with 10 additional pages of information on:

  • Managing agitation behavior
  • Questions from caregivers and answers from professionals
  • Updated resources
  • Recommended readings
  • And much more...

The guide walks you stage by stage through the course of Alzheimer’s Disease with communication tips, personal care advice, and practical problem-solvers. The 30-page booklet is ideal for new caregivers or as a gift for family members or siblings who just don’t understand what is required of the primary caregiver.

A detailed table of contents and ordering information is available in our secure online store at http://www.ec-online.net/Store/newad.htm

Order Before April 21: We will retain the original price of $6.95 (plus $1.00 Shipping and Handling) for our loyal members for the next seven days. After this time, we will have to raise the price to make up for the increased printing and shipping costs of the expanded edition.

ELDERCARE ANSWERS: “Family Dynamics” with Guest Host Phyllis Kramer Hirschkop

Sometimes that hardest eldercare issues to cope with concern family interactions and relationships. Not every family looks like the Cleavers, and not every Father Knows Best. Does your family look more like the Bunkers in “All in the Family” or the bickering Ricardos in “I Love Lucy?” If you have wrestled with long-standing family issues, or occasional flare-ups, then you should attend the latest Q&A chat session in our “ElderCare Answers” series.

Phyllis Kramer Hirschkop will host an hour-long discussion group on Tuesday, April 30, 1:00 to 2:00PM EST in ElderCare Online’s chatroom at http://www.ec-online.net/chat.htm. If you will be unable to attend the live group, please send your advance question to askcasey@ec-online.net. We will make every effort to respond to all questions. We will post a transcript immediately after the session.

Topics for discussion include:

  • Anger and resentment felt toward the parent.
  • Rivalry among siblings that interferes with helping parents.
  • Coordinating long-distance caregiving.
  • How do I know when it's time to move my parents out of their home into an
    assisted living facility?
  • How do I organize a family meeting?

Phyllis is a trained social worker who has practiced as a psychotherapist for 26 years. She has also received training in coaching. Over the past few years, she has focused her practice on working with adult children with elderly parents and the problems that arise as the parents become more and more needy. Her website is located at http://www.our-aging-parents.com.

NEWS YOU CAN USE: Medicare Coverage for Dementia Patients Clarified

The federal government has clarified its policy regarding Medicare’s coverage of some services for people affected by dementia to permit for greater access to speech, occupational, and rehabilitation therapies. Other services, including neuro-diagnostic testing, medication management, and psychological therapy may also be more readily available to individuals with Alzheimer’s Disease.

The policy change signals a greater opportunity for seniors and caregivers to individuals with Alzheimer’s Disease to appeal unfair denials and work with doctors to provide therapy services. It is not a guarantee that all requested services will be approved, that all denials will be reversed, or that more services are now available.

Read the complete article, that includes detailed tips on how to file appeals and which documents to present to your doctor and Medicare at http://www.ec-online.net/Knowledge/Articles/medicaredementia.html.

ELDERCARE FORUM: Latest Postings

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).

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.

Casual Corner: “Growing Things:” It’s the time of year where those of us with green thumbs revel in the warmer days and dark dirt. If you enjoy gardening, join in this discussion at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=20&t=000029.

Daily Challenges: “The Medication Merry-Go-Round:” Over the past few months, I have noticed a fair amount of discussion around the topic of whether, and how much, to medicate our loved ones. Member Semper Fi has started a thread where I hope we can have a frank discussion of the pros, cons, and unknowns of this important topic at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000228.

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=000074.

New Caregiver’s Meeting Room: “1st Week in Assisted Living:” Member toetech has recently moved her grandmother into an assisted living facility. If you care to share your experiences and help both toetech and her grandmother make the adjustment, join in the discussion at  http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000035 .

Family Dynamics: “Financial Abuse: Should I Confront?:” None of us would want to see our loved one being taken advantage of, especially by another family member. But the situation is rarely clear cut, as member Kimbaya explains. Share your advice at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=2&t=000060.

I, Caregiver: “CGs Health and Survival:” Forum Moderator Edyth Ann has shared some personal reflections on the importance of caring for oneself. Please take the time to read her comments at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=19&t=000055.

Former Caregivers Meeting Room: For those of us who have moved forward from our caregiving responsibilities, or see light at the end of the tunnel, we have a special section of discussion threads at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=38.

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 April

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.

April 16 (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.

April 17 (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."

April 17 (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.”

April 17 (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.”

April 18 (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.”

April 20 (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.”

April 22 (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.”

April 24 (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."

April 24 (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.”

April 24 (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.”

April 25 (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.”

April 27 (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.”

April 29 (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.”

April 30 (Tuesday 1:00 to 2:00PM EST) “ElderCare Answers:” Guest Host Phyllis Hirschkop leads a question and answer session on the topic of Family Dynamics. Advance questions can be submitted to askcasey@ec-online.net.

April 30 (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.

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.

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