Volume 3, Issue 4 - The Ribbon Newsletter

Volume 3, Issue 4
March 10, 2000

As many of you have noted, The Ribbon has been on a brief hiatus. Jamie, AKA DrMom1955, the heart of The Ribbon, has been dealing with the decline of her beloved grandfather for the last few months. In the past month, the vigil has been more intense and Jamie has been needed elsewhere. The following message, thanks to Liza513, was sent to me on March 5th....

Hi everyone,

DrMom1955 (Jamie) called me this afternoon. Her grandfather who has been ill for some time passed away in his sleep early this morning. The arrangements are as follows:

Name of Grandfather: Allen L. Bradford ("Bree")

Woodlawn Funeral Home
660 Thompson Lane
Nashville, Tennessee 37204

The services will be held at the funeral home Tuesday at 1 PM central standard time.

You can send e-mail cards to Jamie .... DrMom1955.

Hugs to all of you,

Joyce

I know all of you will reach out and share Jamie's loss. As caregivers, we all feel the pain of losing a loved one. Whether it is because we have already lost our own loved one or because we struggle daily with care and know in our hearts that the pain is yet for us to face, we embrace each other and give each other strength.

The lesson is reinforced...there is strength in sharing. Reach out and touch someone.

From DKThomp

Good Morning All:

March 4, 2000. It was Sunday, March 4, 1956. Ann and I went to church in the morning and then out to a quick lunch. I dropped off Ann at her apartment to get ready and packed while I drove out to the farm to pick up Ann's mother and grandmother. Leo and Shirley Walsh picked up Ann and we all met at the Southern Pines Baptist Church about two o'clock. There were only about ten people there, just family and close friends, and Leo and Shirley stood up with us. The service didn't take more than twenty minutes at most. We said our I dos, I kissed the bride, and we walked out of the church husband and wife. We said our thank you and good-byes got into the old 1951 Mercury and took off to the mountains for our honeymoon. Yes, it was a very simple and quick service, but the vows we said were just as important to us as if it would have been one of the larger more fancy weddings. Surely, she was my beautiful bride.

That was forty-four years ago today and we are still in love. What a wonderful forty-four years it has been. We have been blessed, blessed, and blessed again by the Lord. When I think back over all His goodness to us I am overwhelmed. There is no accounting for it except that His love for us is beyond all human understanding.

I will celebrate this our special day by trying to tell Ann that she is still my beautiful bride, and that we are still in the love and care of our Lord and Saviour. I wrote a poem for her which I will read to her hoping she gets some of it. Love has a way of piercing through the darkest clouds; maybe it will break through to her today.

Beautiful Bride

Love more than love became my bride.
She gave of herself in most humble pride.
These many long years stayed at my side.
My Ann, my Ann, my beautiful bride.

Locked in love two hearts became one.
Drawn together by the love of the Son.
Two lovers walking in wondrous stride.
Ann, my Ann, my beautiful bride.

My wife, my women, to her I would sing.
Life's long song as love birds on the wing.
Together we've winged through all life's tide.
Ann, my Ann, my beautiful bride.

Time is fleeting while loving hearts are beating.
Tested by many trials, yet love is still revealing.
His power to overcome, He is always at our side.
My Ann, my Ann, my beautiful bride.

In His Great Love on this special day;

Doug and Ann

From TPoole2233

Hi,
I'm a caregiver for my Mother who lives with my husband and myself. Since my Mother has been with us 10 months. She has Dementia. After reading all the Emails from so many I feel I'm not alone. The struggle and sad feelings I have regarding my Mother becomes so painful. Never thought it would be this hard taking care of her. At times I get so stress I go to my higher power. I also say to myself this is your Mother the person who always took so good care of you. And I want so much to do the same for her. I hope everyday I will be able to do my best in caring for her. I want to take care of her needs and want her to be happy. I feel at times that my stress level is so high. Over the months I have done a lot better unstinting her Dementia and have read books on the subject also. I am now planning on a family support group program. I hope it will help me understand more just what she is going thought and how I can better help her. Sometimes I wonder WHY! I'M SO STRESSED.
LINDA/WA

Important Announcement - Caregivers Chat

Hi Everyone

After careful consideration, we have decided to cancel the Tuesday Night Alzheimer's and Dementia Support Group. You are all very important to us and we wanted to do what was best for the group as well as for ourselves. The following changes will be effective immediately.

The Caring for Elderly Loved Ones will remain on Tuesday Evenings but will be moving to 8 PM EST slot and will be in Positive Reflections. As always, Alzheimer's and Dementia Caregivers are welcome here.

The Friday Night Alzheimer's and Dementia Support Group has remained unchanged. It will continue to be at 9 PM EST in Health Conference.

Once again we want to thank you all for your support. We have tried to make the changes without any disruption in the support network. As always after each chat the private room CSG will be open for late comers or those just wishing to continue the chat.

Sincerely,
AC, Rid and Mad

From JRNYWMN (RE: Vol.3, # 3)

Dear Rita,
I am full of tears right now, having read your letter in The Ribbon.
It hit home. I know that the very thing Mom would want as she "passes thru the next portal" is for her kids to "come together". Your tale is every Mom's wish..that her kids would continue on with what she had hoped to establish in her family...lots of love. Wishing you well. Ann

The following e-mail was forwarded to me by our Webmaster, Weather91, AKA Kevin.

Thank you, Mary!

Community Extends Beyond The Walls of the Community Hospital

Home care is a topic that has received much attention primarily in regard 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 patients 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

Elder-Service, Inc.
Geriatric Care Consultants and Home Health Care Services
Serving Bucks and Montgomery Counties in Pennsylvania
Accepting Master Card and Visa for your convenience

(215) 442-1800
mary@elderservice.com
http://www.elderservice.com

Dear Kevin: Hi. I hope that you are well. I am submitting this article for your review and consideration. I believe that the people who are members of The Ribbon will benefit from reading about this topic. Please advise me of your decision.
Thank You.

From NOGYCLARKE

Dear Friends:
I now have all the Ribbons in a nice folder to share with someone else. I have to tell you that I lost the love of my life of 53 years on Dec. 14. With all your help he was able to live a comfortable life. The Alzheimer's Assoc. was very good to me and all the legal help you had on line I was able to make new legal papers and everything has gone well.

I need to tell you that he only had 2 years but in that time he went so fast. Aricept did not stop it. He took to the end but could not talk, I feed him to keep from choking, hospital bed, and all comforts were given by the Insurance. His prayers were answered of his not having to be taken to a care home. He even went to daycare in the end 3 days a week. Thank Goodness for all his friends who gave him a wonderful farewell with full Military Honors. Family misses terrible but I want to thank you for so much help of sending me the Ribbon.
Norma Lunnon, Fullerton, Ca.

From Vjsr38

I took my mother to the doctor last week and she has lost more weight, now weighing 86 pounds. She has lost 10 pounds since this past October. Her doctor took her off of Zoloft and Trazadone and put her on Remeron. Do you know of anyone that is taking this medication or know anything about it? The doctor said this would help her depression and should case her to gain weight.

God Bless,
Jean

From VWebber491

I found a little article in San Diego Union yesterday. UCSD is studying the effects of caregiving on spouses who are primary caregivers of people with Alzheimer's.

Eligible participants will receive 10 days of in home respite care. The Alzheimer's Caregiver Project involves the study of Caregivers' stress, social support, coping and patient functioning. Participants will be interviewed three times and monitored for stress hormones, blood pressure and heart rate during a two month period. All protocols may be conducted in your own home.

For more information, the number listed was 858-534-3211 or 858-534-3428.

Vee

Links

From LD4TPC

Memantine Shows Promise In Moderate To Severe Alzheimer's

From Liza513

Delays In Administration of Thrombolytic Drugs More Likely In Elderly Patients

A study has shown that many elderly heart attack patients who need thrombolytic medication do not receive it as promptly as younger patients.

Anti-Parkinson Drug, Requip (Ropinirole), Can Cause Patients To Fall Asleep Without Warning

A warning has been issued by SmithKline Beecham Pharma that ReQuip (ropinirole), a treatment for Parkinson's disease, may cause patients to suddenly fall asleep.

A Personal Note

February is always a trying month, what with the ravages of winter setting in and Feb.'00 has been no different.

Feb. 14th was the first anniversary of the passing of my dear friend, alzjane198, AKA Jane Levy. For those of you who were blessed to know her, I know you still feel her loss as well as her presence in your hearts. I will always be thankful to have known her, the caregivers caregiver.

For those of you who would like to know more about her, a Special Issue of The Ribbon was sent out on Feb.21, 1999. You can view this issue on the web site at www.theribbon.com. The message board at the site is dedicated to Jane and there are also wonderful thoughts at the Dedication Garden area.

One last note......this past week I lost a loving person in my life....my ex-father-in-law passed away at the age of 93. Although his son and I have been divorced for many years, "Pop" was still a person who shared many of the major events of my children's lives....birthdays, graduations, weddings. He was a kindhearted man and a sterling example for my children of how a person should be in life and he will be sorely missed. His struggles with his health over the last few years have taken a heavy toll on the entire family and on all who knew and loved him. He was cared for by my brother-in-law who sacrificed much for his father's care.

I am reminded of a comment made by my daughter, not too many years ago when she was in college. She recognized that she was very blessed to have, at the age of 20 or so, 4 living grandparents. Most of her friends where not so fortunate. Now, my mother, fighting the battle of AD and living in a personal care facility, is the only remaining grandparent.

The cycle of life goes on. People come in and out of our lives....touching us, changing us.....Jane, Bree, Pop....making us better people for the understanding and love they force us to feel. When I look at my darling grandson, Coleman, only 6 months old, I pray that someday he will have these same feelings of love and life in his heart. The past will shape his future. May it be filled with love.

Karen

I know I speak for Jamie when I thank you all for your understanding in the delay of getting The Ribbon out to you. We hope to be back on track in the very near future. Please continue to send your notes, thoughts, feelings and articles to share in future issues. YOU are The Ribbon!

Hugs and Peace,
Karen (KMenges581)
and
Jamie (DrMOM1955)