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The Ribbon - Care for Caregivers
Volume 7, Issue 7
April 20, 2003


TheRibbon.com
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I must tell you from the get-go that I'm hoping this issue will turn out okay. I had to have a new hard drive installed in my computer and I've lost a lot of stuff. I haven't had time to reinstall much of my software or my printer and scanner. I will eventually get around to it. (smile).

I took my much anticipated trip to California to visit with Linda, PHOTOLJT. She said it was to be a healing time for me and it certainly was. We did a lot of sight seeing, took a lot of pictures, and just spent time together. We also saw a play I though was appropriately titled "Six Women with Brain Death". It was uproariously funny. My sides were hurting from laughing so much. Linda pampered and spoiled me rotten. I'm not used to having someone take care of me...I'm the caregiver! I had a lovely time and I'm already thinking of a return trip!

The drawback to having taken the trip of 5 days was that Nick, my husband, seems to have progressed in his dementia. I had noticed a slight decline before I left but it seems it is more noticeable since I've been back. It makes me sad to see this happening so fast. He is only 53. I'm just so thankful that Linda allowed me the opportunity to take a fresh breath before my carepartner duties become more demanding again.

Today is Easter! We have had such good weather lately. It is supposed to rain later this evening so I hope the annual "Mammaw's Easter Egg Hunt" doesn't get rained out.

I hope you enjoy today, make it a good day no matter what comes your way. Remember, there is a blessing each day no matter how small. Just look and you will find it!

Hugs,

Jamie


Navigating the World of Managed Care

from alzheimers-tips.com

by Risa Levovsky

Many caregivers do not know where to turn when they suspect that someone they know may be suffering from Alzheimer's disease or other forms of memory loss. In desperation, they look for an answer by reading books, surfing the Internet for information, and visiting numerous doctors who have varying opinions about the diagnosis of Alzheimer's disease. The search often leads to an improper diagnosis or just to a dead end.

There are many compassionate physicians who will be able to help you cope throughout his illness. As a caregiver, your physical and emotional needs must be taken into consideration every step of the way. If you have opted to join an HMO, Medicare HMO or Medicaid HMO, you are required to pick a primary care physician on the panel. Physicians have different amounts of experience in caring for older adults. Some lack the specialized skills and knowledge needed to diagnose and treat patients with Alzheimer's disease or other forms of memory loss. Although these plans are more economical than the Federal Medicare Program, you are restricted to seeing a physician on the panel.

A caregiver asks a very important question: My primary care provider has not offered to refer my husband to a geriatrician, neurologist, or geriatric psychiatrist. If we are members of an HMO, how do we obtain referrals for these specialists in our network?

Use your provider directory to choose a provider who meets your geographic and medical needs. Draft a letter making a formal written request for a referral to the specialist you have chosen from the panel. Send a copy of your request to your primary care provider and send a copy of the letter to the Medical Director of the HMO. His/her contact information should be listed in your provider directory or should be available to you by calling the HMO's customer service number.

A caregiver shares an important concern: I was able to get a referral from my primary care physician, but the receptionist at the specialist's office says the next available appointment is not for several weeks.

Once a referral is provided, it may take weeks or months before you can actually see the doctor. If this happens to you, you should not give up! Send a letter to the HMO's Medical Director. A letter of concern can be very powerful, especially if it gets to the leader of an organization. A sample letter is provided below:

Sample Letter

Date
Your address
Phone number
Name of HMO's Medical director
Address

Dear _________:

This letter is to formally notify you of my (concerns or dissatisfaction) with the length of time before accessing the urgent medical care needed by (person's name and social security or member #). (I, my husband, my wife etc) saw Dr. (primary care physician's name) __________ on (date) and he referred me to Dr. (specialists' name) _______, who is a specialist in your HMO. According to Dr.________'s receptionist, the first available appointment is not until (date). I am formally requesting your assistance in obtaining an immediate appointment with Dr. (specialists' name). Any delay in your assistance may result in severe medical and emotional implications. I look forward to hearing from you immediately regarding this matter. You may reach me at (Give home and/or work #'s along with your mailing address.) Thank you in advance for your cooperation.

Sincerely,
Cc: (The insurance commissioner in your state)

More helpful hints to assist you in obtaining results:

  • Include a copy of the HMO cardholder for whom you are advocating.

  • Include copies of any prior requests, so that your past efforts are recognized.

  • Send a copy of this letter to the Insurance Commissioner in your state.

  • If you do not receive an immediate response from the Medical Director, contact your Insurance Commissioner by phone and in writing.

  • If you use a fax machine, request a call confirming receipt in the cover letter.

  • If you are using the Internet, make a hard copy of all e-mail correspondence.

  • You may purchase a return receipt if you opt to use the U.S. mail.

  • Send all correspondence via registered mail. This will assure your letter it actually made its way to the person.

Risa Levovsky, author of Alzheimer's Tips Revealed, wrote this article: Successful Caregiving in the 21st Century. To order a copy of the book, go to http://www.alzheimers-tips.com/. Copyright-Risa Levovsky 2002 Library of Congress

Risa Levovsky - After ten years of research on the front lines, I have developed a simple program that teaches both caregivers and professionals exactly how to provide quality care to individuals with Alzheimer's disease and other forms of memory loss. I am not new to this cause. My research was discussed on ABC news.com in an article entitled 'One Caregiver's Struggle with Alzheimer's disease. I also wrote a column entitled 'The Caregiver's Corner, for Southern Lifestyles Magazine. For ten years, I worked on the front lines. My most recent position was The Center Manager at the award winning Weinstein Center For Adult Day Services in Dunwoody Georgia. Now I devote 100% of my time to promoting my first book and to fundraising for caregivers. In an effort to raise funds for caregivers, I donate 50% of the proceeds to any organization that promotes my new book entitled 'Alzheimer's Tips Revealed: Successful Caregiving in the 21st Century. . Visit the author's web site at http://www.alzheimers-tips.com/.

Copyright Notice: It is illegal to reprint articles, in any format (including emails, web sites, etc.), without explicit written permission from the author of this article.


In Passing: Those We Must Remember

Dated 4-8-03

So many of you here have walked the path of the AD with me concerning my Mom. Most of you know though, that my brother has been battling a brain tumor for almost 3 years now. He lost that battle this morning. My brother Joe passed away around 7:00 am today.

I just wanted to say thank you for all of you who have offered support and said prayers on his behalf. You've been supportive not only with the journey with my Mom, but also my brother.

Blessings,

-Ivy-
UnbrokenFaith (only on AOL)

Join us in extending your sympathies and condolences to Ivy. She has been such a support on the Alzheimer's Disease Message Board. Our thoughts and prayers are with her and her family during this hard time.


Baby Boomers as Caregivers, a Force to be Reckoned With

by Mary C. Fridley RN, C

I recently attended the Joint Conference of The National Council on the Aging and the American Society on Aging in the lovely windy city of Chicago. It was a whirlwind four days of activity, excitement, and exhaustion...all well worth it. The conference brought together almost 4000 professional in the many fields of aging and was a forum for hot aging issues. One very interesting and timely issue was addressed by Sheila Quirke, LCSW and Lisa Vanermark, LCSW of Presbyterian Homes in Evanston Illinois. They talked about Baby Boomers as caregivers and described them as "...unique, with specific needs. Their sheer numbers, strong appetite for information, and history of challenging the norm has led them to reshape developmental milestones. Faced with the challenge of caring for older adults while anticipating their own future, Boomers are forcing professionals to acknowledge the gap in current caregiving supports."

The Baby Boomer generation is known for its passionate embrace of causes and questioning of authority. These traits, once looked at as negative by society, are now changing the stereotypical image of who a caregiver is. No longer can society assume they are women content to accept the role as a gender expectation. Many caregivers today are working men and women raising families while caring for disabled spouses, children, or parents. They are also grandparents raising grandchildren. They are people passionately concerned about their loved ones who want to, or have to, continue to work while providing the best care possible.

In order to do this they want affordable respite, financial help in the form of direct payment for care and/or tax incentives, and accessible resources that enable loved ones to live safely in the community. They expect and demand quality institutional care which is changing the way assisted living facilities and nursing homes are held accountable. They also want standards set in place to meet their needs as future care-receivers.

This generation is a growing revolutionary force to be reckoned with. According to a recent survey by The Media Audit, the 50-plus age group has grown to represent approximately 36% of the American population in the past five years. And as history has shown Baby Boomers will not age in silence; their voices will only get louder. Add your voice by calling or writing your congressmen and women. Tell them to make caregiving issues a priority on the legislative agenda.


Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.


What is Quality of Life?

by Mary Emma Allen

"What is quality of life?" becomes a question most families of Alzheimer's patients eventually ask themselves. To each person it's different and even will vary as we become involved as caregiver for our family member.

Before my mother developed Alzheimer's, I never thought I'd want her to continue living at a stage where she didn't know me, where she became dependent on others for her care, where she often lived in the world of her childhood. However, my view on this changed as I saw both Mother and her sister take the journey through Alzheimer's.

Mother's Life Had Value

I realized that even though Mother became less capable, often did frustrating things, might think I was someone else, she was still my mother. She still was interested, for shorter and shorter periods, in life around her and my activities. As a former school teacher, she sat fascinated all one afternoon as I prepared a slide program about the Oregon Trail to present to youngsters in a junior high. Then after my presentation, she wanted a report on how it had gone, even though her thoughts drifted off soon after she asked about it. I still have fond memories of that shared time together.

We'd bring out the quilt I made with her mother(my grandmother) when I was 8-years old. Mother recognized some of the pieces as fabric in a younger life. The reminisces of her childhood became treasured information I wrote down to share with future generations. Our looking out the patio door in the evening, seeing our reflections there, and Mother thinking they were visitors stretched my imagination.

Later when she resided in a nursing home and very seldom recognized me, my daughter, and grandchildren, she still enjoyed the youngsters' visits. "Such good children," she remarked as they played around her wheelchair. Then she patted the little boy on his head. He looked up and grinned at his great grandmother.

Mother lived many years beyond what many people could consider a "life of value. However, for my family and me, she added a dimension to our lives...one of caring, understanding, and laughter that we would have missed if we thought her of no value and discontinued caring for her and visiting her in the nursing home.

For those who think an Alzheimer's patient has no quality of life, they haven't experienced the joy of seeing a someone's face light up with a shared hug, kind word, or laughter even though they might not fully understand who you are. "Quality" takes on a different meaning when you consider it from this viewpoint.

(c)2003 Mary Emma Allen

(To help others understand...for their loved one's sake and for their own, I write and speak and share my experiences with my mom and aunt. Out of this has grown my book, "When We Become the Parent to Our Parents." For more information, visit my web site: http://homepage.fcgnetworks.net/jetent/mea; E-mail: me.allen@juno.com)


Links

From Zema7838@aol.com

i want to send this link to about different meds and pain. i has some good info about medications and pain.

heather

Medication Combinations: Playing With Fire
How many doctors are you seeing? If the answer is "several," then chances are you're taking several medications, as well. Now for the hard questions: Do you know how those medication combinations are interacting?

The Genetic Reason Why It May Hurt So Bad
How's your pain threshold? Can you withstand a lot of pain, or does the mere mention of the word make you uncomfortable?


From dwyshak@webtv.net

StemCellAction.org

www.stemcellaction.org is informative. The Portraits of Hope biographies brings it home. Diane


KRT Wire | 04/01/2003 | The Good Day: An Alzheimer's Love Story

This is a great story, heartbreaking but one we all should read.


Just a little note here...karen@theribbon.com may have to zoom off to Pennsylvania as her daughter is due to have a little baby girl. Bear with us if The Ribbon runs off schedule for a little while.

Happy Easter!
Jamie and Karen

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