Volume 5, Issue 20
October 1, 2001

www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Gathering of Friends
Final Report

This is the last issue of The Ribbon before our second Gathering of Friends in Nashville, TN. The GOF will take place next weekend, Oct. 6, 7, & 8th.

Those of us attending are getting excited....anxious to see old friends, to put faces to the silly names we see on line and to share.

Many of us are flying into Nashville. In light of the recent tragedy in New York City, no easy feat. To those people, we thank you. We are showing that we are strong, that we are determined and that we are ready for life to go on.

To those of you who cannot attend, we will miss you and hold you all in our hearts. Saturday morning, Oct.6th, Jane's Angels will walk in the Alzheimer's Association's Memory Walk. We thank you for your encouragement and support. The donations have poured in. We raised over $3000.00 with your help.

We would like to say a "Special Thank You" to the following who really chipped in with donations even after possibly donating to the relief effort in New York and Washington, D.C.

Eldercare Online
www.ec-online.net

Alzwell Caregiver Support
www.alzwell.com

The Employees of Folsom State Prison, Folsom, CA

The Employees of Westpoint Stevens Fabrication Plant, Clemson, SC

In two weeks, we will no doubt have more pictures posted on the web site. On the Home Page, click on "Gathering of Friends", (about half way down the left hand column) and you'll see pictures from the GOF in 1999. We will add to that with pictures from GOF 2001.

Also remember that October is National Alzheimer's Awareness Month. Memory Walks are taking place all over the country this month. We would appreciate hearing about your experiences in your home town.

The Dedication Garden

When The Ribbon web site began 3 years ago, one area that very popular was The Dedication Garden. We had many readers who wanted to have a place where they could leave their thoughts and feelings for either a loved one who struggled with Alzheimer's Disease or for a person who cared for an AD patient.

This area is accessible by going to the main page, move your cursor to "Communicate" on the bar at the top of the page, and click on "Dedication Garden" from the dropdown menu.

Once there, click on "Submit A Dedication". That will take you to a page where you can provide some information, add a flower from a variety of options, and write out what you would like to say about your loved one or someone special.

At the bottom of the page, you click on "Submit My Dedication", and your flower and your words become part of The Dedication Garden for all to see and share.

Because of technical difficulties, we need to "plant" our Garden again.

We hope you will all visit our garden, and add to it. It is another way to share feelings and to be a part of The Ribbon.

In Passing: Those We Must Remember

Dated 9-16-2001

I just wanted to let you know that Shelton, my husband died the 19th of August. He had the disease for 11 years and when he died he was just skin and bones. Could not even take his blood pressure since no arm left. It was really a blessing that he went on to a better life. I did not get to the chats too often since that was the night of our support meeting and the Friday one my son took me out to dinner for a little R&R. I really do enjoy reading the Ribbon so please keep sending it to me since I make a copy and take it to a friend that does not have a computer. I am still attending the support meetings to help out in any way I can. You guys are doing a wonderful job so keep it up.

I didn't have any flowers at my husbands memorial because I told everybody to send the money they would spend on flowers to the Altzheimers Assoc. I figured that would be more a tribute to him than flowers that just don't last. I am still getting cards of the donations that were sent in his name.

God bless all of you and the wonderful work that you are doing. I know it brought alot of comfort to me.

Love,   Sally   (wsals62@aol.com)

Intimacy, Marriage and Alzheimer's Disease
by Rich O'Boyle, Publisher

Talking about intimacy and sexuality is never easy, from the time we areyoungsters until we are very old and wise. For some, sex is enjoyable, for others it is embarrassing and for others still it is frightening. Nevertheless, sex is part of our lives, and when combined with Alzheimer's Disease, it can be problematic.

It is important to distinguish the differences between intimacy and sexuality to better address the challenges created by dementia. Intimacy is a "warm friendship," while sexuality is the use of words, gestures, movements or activitiesthat attempt to display physical affection. Sexual activity in healthy relationships helps people to stay in good physical condition and helps to reduce physical and psychological stress.

Dementia's Impact on Sexual Relationships

Even the most confused individual affected by dementia is still a sexual being. Dementia does not mean just memory loss as the common perception. It is a form of brain damage that can affect many different aspects of consciousness, motor skills and executive function, in addition to memory. With respect to sexual behavior, your loving partner may no longer remember how to arouse and satisfy you; may develop impotence from blood pressure medications; may become hypersexual or unable to understand the consequences of his/her actions in public; may lose social skills and charisma; may lose self-esteem; or may engage in impulsive, thoughtless or indifferent behavior.

Your loved one may engage in sexual behavior such as public masturbation, undressing or inappropriate sexual advances. You should not feel responsible for these behaviors, they are the result of your loved one's brain disease and are not a reflection on you. Accusations of infidelity or hypersexuality may make you feel misunderstood and angry. Take time to reassess the situation. Is your loved one seeking reassurance or a boost in self-esteem? Is it simply a breakdown in judgement? Understanding the behaviors in these terms depersonalizes the impact.

Caregivers to loved ones with dementia, especially spouses, express many concerns.

Guilt: for refusing a spouse's sexual advances, for wanting a satisfying intimate relationship, for simply wanting a personal life, for wanting the burden to end.

Frustration: with problems that arise during sex, with demented spouse's inability to satisfy or appear interested in your sexual needs, with the inability to relate to your loved one due to his/her diminished mental capacity.

Resentment: for having to suppress one's own needs, over your loved ones accusations of infidelity, of your marriage vow to care "in sickness and in health".

Embarrassment or Confusion: over changes in spouse's behavior, by sexual advances by your spouse who no longer recall's your name, by repeated advances even after sexual episodes early in the day, over emotional intimacy that has been lost.

Fear: of acting selfishly, of attending to one's own needs, of wounding pride if you refuse sexual advances, of raping your spouse because they really can't give informed consent.

Effectively coping with these changes in your relationship are essential. Start by doing things that reduce stress and enhance your self-esteem. Keeping a journal can help you to release your pent up feelings. Most importantly, develop a support system of peers who you can comfortably share your feeling and experiences. This may seem awkward at first, however once you recognize that this is an issue, you can begin to grow from it. Many Alzheimer's support groups have a mix of children caring for aging parents and spouses caring for their partner. Seek out individuals who are "most like you" to share a cup of coffee, ask the facilitator to raise the issue cautiously, suggest a guest speaker, or consult with a religious advisor or therapist.

Remember, that as a caregiver, you are not required to devote every ounce of energy to your loved one. It is essential to maintain your balance and minimize your stress level. It is OK to get angry sometimes (but not to get violent). Your emotions are natural, but the challenge is to address the in a healthy manner and grow from the experience.

Rediscovering Loving Relationships

A couple's role and intimacy will undergo change (all relationships do over time). Even with the onset of dementia, there are still facets of your relationship that you can nurture. However strained and limited, you can still focus on these positive aspects of a relationship:

• singing and music
• reviewing photo albums
• talking about the past
• taking walks or rides
• visiting with animals or children
• engaging in simple projects such as gardening or painting
• assisting with personal care such as shaving, manicures or hair-setting
• exercising and dancing

However you cope with the changes in your loving relationship, you may be able to find additional emotional support and relationships in friends and family, children, pets, and coworkers/volunteers.

The Power of Touch

All individuals, regardless of age or abilities, have the need for touch and love and the desire for companionship. Touch is a human need and personalizes caregiving. People respond to touch depending upon their upbringing and self-image. A touch can convey compassion, not just sexual interest. It can convey reassurance (as a gentle stroking of the forearm), safety (as an arm around the shoulder) or relaxation (as a shoulder massage) among other feelings.

So often we rely on the "miracles of modern medicine" and technological solutions to the stresses of aging and physical illness (and even spiritual/emotional losses). Most religions have traditions of the healing and curative powers of touch. These traditions can be interpreted as myth or fact. Yet even modern science recognizes the importance of human interaction and physical contact. Touching or massage can promote physiological responses such as decreased nervous tension, decreased muscle contractions, increased circulation, and decreased heart rate and blood pressure.

Ten years ago as I watched a good friend of mine die of AIDS. As David's disease progressed he suffered from terribly disfiguring Kaposi's sarcoma. People avoided him on the street and averted their eyes. In the days before he died, I made a conscious effort to face him as I spoke and rest my hand on his knee or shoulder when we sat together. At times this was not easy for me. I did not -- could not -- cure his disease. But I know that I made a difference in his frame of mind, especially given his own perception of himself as "untouchable".

When I volunteered as a Long-Term Care Ombudsman at a nursing home, I frequently found myself sitting and talking with residents. THEY reached out to touch me -- grasping my arm (sometimes bone-crunching!), tapping my knee and even kissing my hand. People in residential settings are not solely "patients" -- they need attention and affection more than ever before.

Caregivers have a great opportunity to enhance the well-being of their loved ones by being more conscious of the power that they hold in the fingertips. I have included a few additional examples:

• Encourage family members and guests to face their elder when talking to him/her. This is an essential skill for hearing-impaired or demented elderly.
• Gently massage some lightly scented lotion on your loved one's hands and feet. Yeah, old people's feet get gnarly, because/so they don't get touched often. Have a podiatrist take care of nail clipping and necessary medical procedures.
• Whenever you sit or stand with your loved one, retain physical contact by holding his/her hand or arm. This also can help to orient a demented or sight-impaired person.
• Avoid signs and actions that show your discomfort or repulsion to your loved one's ailment(s). People are very conscious of the way that other people perceive them and take on negative frames of mind.

How Are Others Coping?

Share your ideas, experiences and feelings with other caregivers in the ElderCare Forum

Additional Reading

• Sexuality and the Alzheimer's Patient, E.L. Ballard and C. Poer, Duke Family Support Program, Duke University Medical Center, 1993 (available from Duke $10.00 http://www.medicine.mc.duke.edu/adrc/papers.htm)
• He Used to Be Somebody by Beverly Bigtree Murphy
• Caregiving: The Spiritual Journey of Love, Loss and Renewal by Beth Witrogen McLeod
• The 36-Hour Day: A Family Guide to Caring for People With Alzheimer's Disease by Nancy Mace

Related Articles

• Understanding and Acknowledging Negative Emotions
  
• Overcoming Negative Emotions
• Identifying and Reducing Stress in Your Life
• Family Issues

Off-Site Link

• Changes in Relationships (Alzheimer's Association Pamphlet)
  http://www.alz.org/caregiver/guide/coping/changes.htm
• Intimacy in Alzheimer's (Baylor College of Medicine)
  http://www.bcm.tmc.edu/neurol/index.html

Source: This article has been developed from a presentation at the World Alzheimer's Congress on July 17, 2000 by Trudi Cholewinski, MSG, Director of Programs NENY Chapter of the Alzheimer's Association, and Rhenda Campbell, RN, Nurse Manager, Fort Hudson Nursing Home.

Available from ElderCare Online - http://www.ec-online.net/ - ©2001 Prism Innovations, Inc

Rich O'Boyle is the Founder and Community Coordinator of ElderCare Online. He attended The George Washington University where he earned an MBA in Economics and Strategy with an emphasis on the management of long-term care organizations. He has worked as the senior health care correspondant in CCH Inc.'s Washington, D.C. news bureau and worked as a technology and management consultant. He has served as an advocate for the rights of nursing home residents as a Long-Term Care Ombudsman in Suffolk County, N.Y. He is also active on the Board of Directors of his local civic association. Rich is a member of the National Association of Professional Geriatric Care Managers and the American Society on Aging.

Rich started ElderCare Online in 1997 with a vision to create an online community where caregivers could connect with each other for information, education and support. He has been fortunate enough to have learned about dementia caregiving from many hands-on caregivers around the world through online support groups. He serves as discussion group host and editor-in-chief of the overall ElderCare Online site.

Contact Rich:
eldercareonline@hotmail.com

AD Test Trials

PROTOCOL NUMBER
IA0030

BRIEF TITLE
Randomized Safety, Tolerability and Pilot Efficacy of AN-1792 in Alzheimer's Disease

DESCRIPTION FOR THE PUBLIC
The study will enroll approximately 375 patients with mild to moderate Alzheimer's disease at investigational sites in the United States and Europe. Patients will receive either AN-1792 or placebo, and they will be evaluated using standard clinical assessments of cognition and memory as well as experimental surrogate markers of Alzheimer's disease pathology. The goal of the study is to evaluate the clinical impact of eliciting an immune response (formation of antibodies) to the A-beta peptide in patients with Alzheimer's disease.

SPONORING AGENCY:
Elan Pharmaceuticals
Wyeth-Ayerst

CONTACT PERSON:
Elan Pharmaceuticals 888-635-9987 (US), 800-898-3736 (International)

DRUG(S) (GENERIC NAME [BRAND NAME]):
AN-1792 [AIP001]

MANUFACTURER(S):
Elan Pharmaceuticals

PHASE
Phase II

INCLUSION CRITERIA
1. Mild to moderate Alzheimer's disease.
2. Ability to cooperate with MRI scanning and neuropsychological testing.
3. Living at home or in the community and a caregiver capable of accompanying the patient on all clinical visits and visiting the patient at least five times per week.

INCLUSION SEX
Both

INPATIENT-OUTPATIENT
Outpatient

CONDITION(S) STUDIED
Alzheimer's disease

STUDY DESIGN
A multi-center, double-blind, placebo-controlled, out-patient, safety, tolerability, and pilot efficacy study of intramuscular AN-1792 in patients with mild to moderate Alzheimer's disease.

TRIAL SITES:

21st Century Neurology, Pheonix AZ, Contact:Sherrie Anderson, RN,Tel:602-265-6500,

Pivotal Research Centers, Peoria AZ, Contact:Shannon Bird, Tel:800-574-8307,

California Clinical Trials, Beverly Hills CA, Contact:Kristen Smith,Tel:310-854-4949,

Pharmacology Research Institute, Northridge CA, Contact:Susan Janko, Judy Morrissey, Tel:818-349-4311,

University of California, San Diego, Medical Center, La Jolla CA,Contact:Susan Johnson, Tel:858-622-5800,

Baumel-Eisner Neuromedical Institute, Ft. Lauderdale FL, Contact:Fannie Levinson, Rafael Semidei, Tel:888-635-9987, E-Mail:Florida

Mayo Clinic, Rochester MN, Contact:Kris Johnson, RN, Tel:507-282-4901,<

Clinical Pharmaceutical Trials, Tulsa OK, Contact:Heather Mossauer, RN, BSN, CCRC, Tel:918-743-4374,

Baylor College of Medicine, Houston TX, Contact:Constance Stewart, RN, Tel:713-798-5328

Book Nook
Waiting for the Morning
A Mother and Daughter's Journey through Alzheimer's Disease
by Brenda Parris Sibley

Evoking both tears and laughter, all of the emotions of Alzheimer's caregiving are expressed in this chronicle, through moving poetry, journal entries, and photos from family albums through the years.

From the creator of the award-winning Web site, A Year to Remember with My Mother and Alzheimer's Disease, this book brings together Brenda Parris Sibley's poetry, her caregiving journal, and cherished photographs from family albums through the years. Waiting for the Morning, the title which comes from one of her poems, is a memorial to Jessie Lee Parris, a victim of Alzheimer's, and provides helpful information for coping with caregiving, including a bibliography of suggested books for both adults and children, and a webliography of recommended Web sites by organizations, professionals, caregivers, and early onset Alzheimer's patients.