Volume 4, Issue 4 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 4, Issue 4
August 21,2000

I thought we'd start out this issue by giving you some listings of Support Groups. We cannot stress to you how important it is to attend a support group, whether it is attended online or in person. No one will understand you and what you are going through like someone who is going through it or has already gone through it.

I want to start out with a letter and links from a great friend, Mina/Jan. She has Early Onset Alzheimer's Disease (EOAD) and is determined to fight with all her might the devastation this brings on her as well as others. I include these links so that you can pass them on to anyone you know who has EOAD.

We are so proud of you Mina and will do anything to help you and the mission you are on.

Here's her letter:

Yes, we are very excited about our new organization too. We as dementia patents are slowly finding each others support and understanding through the Internet. Having connected with each other in Coping With Personal Memory Loss CWPML ( www.egroups.com/group/CWPML), cussing, discussing and despairing over the inadequacies provided for the dementia patient we decided to stop grousing and do something positive for ourselves.

We found another forum at Planet Rx (PlanetRx PATIENT CHAT) that provided us with a time and place for a daily chat in the afternoon from 12 - 1 PDT and 6 - 7 in the evening. This brought us even closer, more than a sterile message, we were able to have a real give and take conversation. Thus was born Dementia Advocacy and Support Network eGroups : DASN(www.egroups.com/group/DASN). We have now become a nonprofit group. We are working on our by-laws, web-site, business cards and brochures. Our membership includes dementia patients in the US,Canada,UK and Australia.

Our Principles, Beliefs and Values:
We are a group of autonomous competent persons diagnosed with dementing diseases. We believe that shared knowledge is empowerment, and that we can utilize our strengths to create a supportive network. We are a voice and a helping hand. Our purpose is to promote respect and dignity for persons with dementia, to encourage support mechanisms such as local groups, counseling, and Internet linkages, and to advocate for the services we need. - DASN Empowering the Mind & Spirit.

Members of DASN will be attending the Heartland Memory Walk October 7th, to officially introduce the Dementia Advocacy and Support Network to the Alzheimer community. (DASN will encompass all dementing disease patients, not just Alz.D) These are exciting times! Together we will make a difference, our losses are strengthened as we come together and share our abilities and magnify our capabilities.

Thank you for caring, thank you for your continued support, you are a blessing in so many people's lives, you give so very generously and unselfishly of your heart. God Bless

Mina - So. California

Nothing the heart gives away is gone, it is kept in the heart of others . . . The Heart Remembers

Contentment is not the fulfillment of what you want, but the realization of what you already have

Jan/Mina's Home Page come visit ;)
www.ycsi.net/users/laura/janmina.html

Live Discussion Groups: Schedule for August

Here are the topics and dates for the rest of August. We host our discussion groups every Wednesday and Thursday night. Remember, we will be giving out several free caregiving books to attendees of the chat sessions, so please come on by. We have had many first-time chatters over the last few weeks and I have seen most of them come back for more. The chat room is remarkably easy to navigate, so don't let that stop your from finding like-minded caregivers.

Access the chatroom from the front page at http://www.ec-online.net, or the ElderCare Community Center.

August 23 (Wednesday 9:00 PM to 10:00 PM EST)
"ALZWell Tonight": Host Susan Grossman leads a self-help group for caregivers.

August 24 (Thursday 9:00 PM to 11:00 PM EST)
Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week's topic is: "When Conversation Ends: Using Body Language to Communicate."

August 30 (Wednesday 9:00 PM to 11:00 PM EST)
ElderCare Answers with Rich O'Boyle. "Medicare HMOs: Understanding Your Options and Rights."

August 31 (Thursday 9:00 PM to 11:00 PM EST)
Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week's topic is: "I Can't Talk to My Loved One, But I Have to Talk to Someone."

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

Kind Regards,
Rich O'Boyle
ElderCare Online
"Tell me why -- Show me how -- Hold my hand"
http://www.ec-online.net

Hi Gang!

Things they are a changing and they are for the better. I am proud to announce a new location and association for The Gathering Place. Our friends at The Ribbon have invited us to share a corner of their website. The possibilities are endless for this new association. I personally am thrill and know there are no finer folks to be working with.

So friends, our new web address is http://www.theribbon.com/GatherPlace.

Along with a new site, we have a new chat server. There are a few subtle differences from our old home, but they are not drastic:

1. There does not appear to be an automatic boot if you leave the room idle for a period of time.

2. When you click on the enter chatroom button at the bottom of the page it will take you to a second screen (just as in our old home) but the cool thing is at the nickname slot, you can type your own first name, your screen name, or whatever is within good taste, and click on the connect. You need not worry about a password or entering your email address! This is going to be so easy!

3. Everything else works pretty much the same as the old place. To leave the room, just close out the window and poof you are gone.

4. And the bestest thing, you can hit the tab key and enter and not get booted off (for you new folks that is an inside joke)! Life will be much sweeter just because of this!

This will take some getting used to and some major patience. I will try to be around as much as possible in the first week if there seem to be problems, so just email or instant message me for those of you on AOL.
See you all at our new home!

Love Always,
Linda
PHOTOLJT

Chat Schedule For allHealth Support Groups
On AOL Only

Tuesday Evenings from 8 pm EST to 9 pm in Positive Reflections for The Caring for Elderly Loved Ones.

Friday Evenings from 9pm EST to 10 pm in Health Conference.

After both Chats on Tuesdays and Fridays those people still wishing to chat may go to a private room to continue: csg

Community Extends Beyond The Walls Of The Community Hospital

Home care is a topic that has received much attention primarily in regards to Medicare investigation of allegations of fraud. The real crime attached to the concept of Home Care is that the members of our respective Communities don't understand what Home Care is all about, or what benefits they actually have under Medicare Home Care coverage. What is even worse, they do not know the many different options available to them regarding Home Care services.

We are a Geriatric Consulting and Home Care Company located in Pennsylvania. We have existed in the same location for over ten years. We are there to service the members of this particular community. To this day, we, and therefore the services we provide are ignored by the Hospital Community. This is evidenced by the comments we so often hear from people who acquire our services; comments such as, "Oh I never knew you existed; where were you five years ago when I really needed help with my mother; why didn't the hospital tell me about you?" The point is that we have been in this community, and are not known the way we should be. Why is this? Most people needing geriatric care services and home care services first find out about such services while being a patient in a hospital environment. Local hospitals have their own Home Care services. However these Home Care services are offered under the Medicare Program. What exactly does this mean? Licensed by Medicare means that Medicare will pay for a portion of the services needed by the patient. The key word here is Portion. By law Hospitals are required to provide a listing of Medicare Funded Home Care Agencies to the patient, in order to alleviate any perception by the patient that the hospital isn't recommending their own Hospital's Home Care service over any others. However, it is not mandated by law that this listing include Home-Health Care companies that are Non-Medicare Certified. And although it is important for Seniors and Caregivers to have a listing of both types of Home Care service providers, the majority of Hospitals opt not to include the non-Medicare Home Health Care Companies.

Why (you may ask,) is it important that people know the differences between a Home Care Agency that provides services covered by Medicare and Non-Medicare Reimbursed Home Care Services? Because the majority of services you will need to acquire for the person needing Home Care will be provided under a Non-Medicare Home Health Care Company. Lets look at what Non-Medicare Home Care means. Over the years it has been portrayed to people that a Non-Medicare Home Care provider is bad and that a Medicare Licensed Home care Agency is good. Yes, it is that simple, yet totally false. Whether a home care company is reimbursed by Medicare (government) or paid privately by citizens (which is the case for a non-Medicare private home care company), does not, - let me repeat this, - does not, guarantee that one kind of provider of these services is better or performs better than the other. It is strictly a way to differentiate the type, amount of services, and the way that home care is paid for. And that's it! The propaganda that has occurred over the past 10 years has included the notion that if the services are provided by Medicare, since the government is supervising its operation, then the Medicare Home Health Care Agency necessarily offers better quality and provides better care than a Non-Medicare Home Care Provider. This is propaganda, and nothing is further from the truth. Quality of Care is attained and maintained, not by government intervention, but by the motivation of the owner of the Home Health Care Company, and its employees. Nothing more. There are owners of private non-Medicare home health Care companies that have a strong sense of commitment and passion, to offer the highest quality of home health care service to its clients, just as there are Managers of Medicare-based Home Health care agencies who do the same. In contrast, there are horrible private non-Medicare home health care companies and equally horrible Medicare home-health care agencies. Private non-Medicare home health care companies offer services in addition to those provided by the Medicare home health care companies. The problem is that people in their respective communities never get to hear, come to understand or to know about the majority of community based non-Medicare home health care services because the hospital who is the patient's first contact regarding this type of service does not adequately inform the community about them. For whatever reason, representatives from non-Medicare home health care companies are not welcomed in the majority of hospitals when they attempt to share information about their services. This practice by Hospitals negatively affects its patients and families, since it is at these times when the Senior and Caregivers are most vulnerable that they NEED as much information as possible so that they can decide on the best course of action for themselves or their loved ones. It is the responsibility of all Physicians, Nurses, Social Workers and Discharge Planners to advise their patient as to ALL home health care options, not just a select few. One would think that any type of service that offers quality care in a particular Community would be welcomed, and nurtured. The reality is however that services such as the one I have described to you are not utilized to its fullest potential within the community, thereby not enabling the community member to benefit optimally from all services available in his or her community.

I hope that there will come a time when people in their respective Communities will come to realize that there is much information, aspects and options relating to Geriatric Care Consulting and Home Health Care Services that the Hospitals are not providing to its patients. Hopefully this will be sufficient motivation for people to work diligently at finding out information for themselves. In spite of people needing to choose home health care for themselves or their loved-ones when they are the most vulnerable, they will need to muster the strength and courage to be leaders, not followers, in investigating ALL the home care options that are available to them, and then acting on them. The rule of thumb in the area of finding quality Home Care services needed to supplement the very few hours that a Medicare Home Care Agency provides, is to listen to all recommendations offered, but then thoroughly to investigate options yourself or hire a Geriatric Care Manager (Consultant) to do this for you.

Mary K. Van Everbroeck
Owner, Elder-Service, Inc., Geriatric Consultant and Home Care Services
Copyright 1999 Elder-Service, Inc.

Elder-Service, Inc.
Geriatric Care Consultants and Home Health Care Services
Serving Bucks and Montgomery Counties in Pennsylvania
(215) 442-1800
mary@elderservice.com
http://www.elderservice.com

Never to be Forgotten

For those who were there, it is a moment frozen in time, never to be forgotten.

It was my father's 90th birthday, and 30 or so of us had gathered at the Alzheimer's care center where he lives to celebrate with him. He seemed unusually bright and cheery as he was greeted, hugged and loved by his wife, his brother, four of his eight children and numerous grandchildren and great-grandchildren. His brightest smile came when he saw his eldest surviving son, Dick, for the first time in three years. Although he couldn't articulate what he was feeling, you could just see the flash of recognition and feel the wave of emotion.

There were lots of photos, a couple of brief speeches, a little entertainment and, of course, birthday cake and ice cream. Dad seemed to enjoy it all -- especially the cake and ice cream.

And then suddenly, it was time to go. No one was anxious to leave --least of all Dad -- but meal time at the care center was fast approaching, and we needed to clear the dining room. There was just time for one more rousing chorus of "Happy Birthday to You."

"No -- wait," someone suggested. "Let's sing something that Dad can sing with us."

On the surface, that seemed ludicrous. Although Dad was quite alert through the event, coherent expression from him was limited to two- and three-word sentences: "I'm fine," "How are you?" and "Oh, no." He couldn't remember the names of those nearest and dearest to him; asking him to participate in a sing-along was an exercise in futility.

Wasn't it?

A different song was selected, one of Dad's favorites from years gone by: "Let Me Call You Sweetheart." Just the mention of the song was enough to evoke tender feelings from those of us who remember the many times it was sung at family gatherings and as a way of passing the time during long family trips. In my mind, I can still hear the melodic blending of Dad's bold and brassy bass with Mom's rich alto resonating in the old Impala as we musically made our away across the California desert to visit family members on the Coast.

All eyes were focused on Dad as we began singing:

"Let me call you Sweetheart, I'm in love with you."
His lips began forming the words of lyrics indelibly etched somewhere in his mind.
"Let me hear you whisper that you love me, too."
His eyebrows arched. His eyes sparkled.
"Keep the love light burning in your eyes so blue."
I was kneeling close to him, and could hear him singing. It wasn't the strong, vibrant voice that had embarrassed me as it boomed out mercilessly in countless church meetings through the years. But it was unmistakably Dad's voice.
"Let me call you Sweetheart, I'm in love with you."

He smiled happily as we harmoniously reached the end of the song. Tears moistened most eyes as we savored the magic of the moment. For a few measures, at least, Dad was Dad again, leading the family in singing one of our old favorite songs. I've thought about that moment a lot since then. There is real power in the music of our lives. I'm not sure I understand it, but there is something dramatic that happens when words and melodies mingle in our minds. It is burned into our consciousness. It becomes part of who we are and what we think -- for good or ill -- freezing moments in time.

Never to be forgotten.
-- Joseph B Walker

Email Bag

From clause8@attglobal.net

I fully support Dr. Sergent's mind set regarding his approach to handling late stage Alzheimer's, and have passed the article on to those who have cared for Elsie. Unrealistic hope provides those giving it, a sense of doing good, but to the caretaker and patient, it gives a false sense of hope, that with the passing of time and continuous degeneration, only deepens the emotional problem. Knowing the inevitable outcome although difficult, is far better then living a falsehood.

Regards,
Bill

From Vjsr38

I just wanted to write and thank you so much for emailing me The Ribbons new issues each time they are available. You have been so helpful to me as I try to do the best that I can to be a caregiver to my mother. She goes from being nice to being agitated. She has fallen twice and bruised her arms real bad but she refuses to let me take her to the hospital to be X-rayed. She fell yesterday and has a big knot plus one solid bruise half way down her right arm. I can't physically make her go to the hospital. I lean on God for strength and he will guide me in each and every situation and I know he is with me and answers my prayers that his WILL be done.
You and Jamie are doing wonderful work.

Gods blessings to you and yours,
Jean

From RSaddaddy

Thank you all so much for the ribbon . My grandma has been AD for 3 yrs now & possibly much longer just no one would see what was wrong until the death of my grandfather. She has no kids techn. she is my step grandma but she has been in the family before my birth and I am 37. I finally realized the do's & don'ts then so far this yr she has been in the hospital 3 times & the last with a stroke. It did not hurt the motor skills but srambled the brain worse than ever. I have seen her go down but I also know she could go along ways with this. This is a horrible disease , she has always taken care of eveyone else in her lifetime now to see her like this is heartbreaking. I only have my husband & 2 girls that help. She has 1 bro. still living in worse shape then her & his children care for him and the distance is so far to see each other but we keep in touch . Thank you again for sharing your experiences it really helps to know I am not the only one going thru this.

Elizabeth
rsaddaddy@aol.com

From Dgcisme

Click here: Alzheimer's Prayer
www.icqgreetings.com/alzprayer.htm
Don't know if you've seen this one yet.

Diana

Now we put another issue to bed. Thanks to each of you for your contributions. As you know they are always welcomed.

Hugs and Peace,
Jamie and Karen