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WELCOME
This site is for Alzheimer's Patients and their caregivers. Its purpose is to help people with Alzheimer's communicate their intentions, needs and feelings to the friends, family and other caregiver's offering support. We offer a simple but very powerful set of tools, The Alzheimer's Cards, to enhance communication and also a book, "The Long Moment: giving a voice to the Alzheimer's mind," to help caregivers understand how human consciousness changes during the progression of the disease. The expression, "I am still here," speaks to the fact that much of the mind is still functioning throughout this period. -
VISION
We believe that individuals with Alzheimer’s disease deserve the same positive attitude, understanding and special communication tools that patients receive with any other fatal illness. While that’s a philosophy that most people will agree with it’s very challenging to live up to because of the breakdown in the communication process that occurs in the middle and late stages. The Alzheimer’s cards offer a simple but powerful approach to communication --- for patients and caregivers --- that can help.
OUR APPROACH
10,000 MOMENTS
A family or friend caregiver will spend many long moments with an Alzheimer’s patient during the course of the disease. We believe that the kindest objective is to make as many of these moments as possible, meaningful, with a minimum of stress for them and the caregivers. A long moment is a success when it brings communication, non-judgment and positive energy/stimulation/feelings to the person with Alzheimer’s and the caregiver.WHAT YOU CAN DO TO ENHANCE THESE MOMENTS
As an Alzheimer’s patient I struggle because the familiar, left-brain, conversational world with a past, present and future is quickly disappearing and my mind focuses more and more on the immediate present tense. I’m still here but you have to “come to me” because I can no longer come to you with normal conversational skills so taken for granted in my past. There will be hundreds of opportunities for you to add quality to my life by making the moments we spend interacting relevant, non-judgmental and grounded in the communication tools and techniques that work with my Alzheimer’s consciousness.THE ALZHEIMER’S CARDS: TWO WAY COMMUNICATION
The Alzheimer’s cards provide an effective means for Alzheimer’s patients and caregivers to communicate throughout the course of the disease. Not only can they be used by the Alzheimer’s patient to communicate an interest or need, they will also work for caregivers because the cards offer the patient a chance to hold onto an idea, in the present, for an extended period of time.WE FEAR WHAT WE DON’T UNDERSTAND
There is much to fear if you are a patient with Alzheimer’s disease but as caregivers we often complicate things with our own fear and anxiety which is communicated consciously and unconsciously. Understanding our own needs and discomfort prepares us to offer a friend or family member with Alzheimer’s special grace. Here is how we do it.- From the beginning to the end of the process we accept them, we forgive them for inconveniencing us and we remember them as the whole person they have always been and will always be.
- We recognize that the breakdown of normal left brain speech and communication skills is based largely on our dependency on these skills and does not mean that our friend cannot communicate or doesn’t need to communicate.
- We are willing to embrace this “friend who will become a stranger” openly, joyfully, in the present tense with humor, caring, wisdom and toughness to bring them meaningful long moments.
- We look for ways to add caring, non-threatening continuity to our friend's life that connects them with their past and creates meaningful transitions that enhance the integrity of their being throughout all stages of the disease.
HEAR MY VOICE
I have a voice. It may be a quiet voice and it may come with some confusion and frustration and without the words we are so used to sharing, but it is my voice and I need for you to hear me. The world can no longer here me. It’s up to you. Please hear my voice.SPECIAL AGREEMENTS FOR ALZHEIMER’S PATIENTS
It’s incredible but because Alzheimer’s patients are not judged to be mentally competent in the later stages, the gift of hospice or a current living will is not available. "The long moment" offers a draft hospice agreement and a life planning document to encourage thinking about these important issues while the patient is still healthy and able to make judgments about their future. -
The long moment
Summary
This short book was written for caregivers and others who have friends and family with Alzheimer’s disease. Its focus is on communication. Alzheimer’s patients have much to say but because the speech-oriented parts of their conscious mind are most impacted by the disease, communication that depends on our traditional, “you tell me what is on your mind” conversational style becomes more and more limited as the disease progresses. By using a different approach to communication and the tools described in the book, "The Alzheimer’s Cards", many new possibilities for sharing and expressing needs are available to both patients and caregivers.Reviews
This book offers a fresh new approach to understanding how Alzheimer's disease impacts our verbal, logical communication skills but leaves many other levels of consciousness largely unaffected. It speaks to the importance of the moment and offers caregivers a path, by focusing on long moments, to bring love and joy and hope to the individuals living with the disease.
Glenys Carl (Founder of Coming Home Connection and Author of "Hold My Hand: A Mother's Journey")This exciting book is not just for caregivers but offers people with Alzheimer's a real voice to communicate their needs when conversational skills have disappeared. Richard Fenker offers us a personal and very unique perspective on how Alzheimer's affects different types of consciousness and how our cultural dependency on left-brain or speech-oriented consciousness often locks our friend or family with the disease unintentionally in a prison of silence. The Alzheimer's Cards are a simple but compelling method for enhancing communication between the individual and caregivers, in both directions!
Jytte Lokvig ("Author of Alzheimer's A to Z" and "The Alzheimer's Creativity Project")One of my biggest frustrations as a Regional Director of the Alzheimer's Association was the absence of books and materials that took the point of view of the Alzheimer's patient instead of the medical establishment and the caregivers. The Long Moment offers a wonderful, fresh perspective from the point of view of the individual with the disease. The "Hear My Voice" section in every chapter is a must read for caregivers. The two appendices that discuss what the patient wants as the disease progresses and a hospice agreement for Alzheimer's patients are refreshing, original and badly needed.
Carolyn Moore (former director, The Alzheimer's Association)
CONTENTS
Introduction
My Story
The Ideal Minute: A Few Observations about Time
Chapter 1: The Long Moment
Chapter 2: Hear My Voice
Chapter 3: The Diagnosis
Chapter 4: Tom and Jennifer
Chapter 5: Love, Flow, and Time
Chapter 6: Patrick and Julie
Chapter 7: The Planet Altzair
Chapter 8: Margie and Maxine
Chapter 9: Late Stage Alzheimer’s
Chapter 10: Katherine and Emilou
Chapter 11: The Doors of Birth and Death
Chapter 12: Closure
Appendices
Appendix A: The Alzheimer’s Cards
Appendix B: My Alzheimer’s Choice Book
Appendix C: How I Want to Be Remembered
Appendix D: Alzheimer’s Hospice Agreement -
AUTHOR
Dr. Richard Fenker, PhD is the author of "The Long Moment" and inventor of The Alzheimer's Cards. Richard is a psychologist and Emeritus Professor at TCU in Fort Worth, Texas. Richard is an expert on the nature of human consciousness and how different states of consciousness impact communication, sports performance and health. Richard's other books cover a broad set of subjects including study skills for college students and student athletes, photography, commercial real estate, human consciousness, sports, restaurants and analytics.
SCHEDULE
- SEP 2013
- "The Long Moment" is available in the US
- OCT 2013
- "The Long Moment" is at the international book show in Frankfurt. Testing of the late-stage Alzheimer's Cards.
- NOV 2013
- Core late-stage deck of Alzheimer's Cards is available
- DEC 2013
- English language version of the "Long Moment" is available in Europe
- MAY 2014
- Core mid-stage deck of Alzheimer's cards is available
- JUN 2014
- Alzheimer's cards apps are available
- JUL 2014
- AAIC conference in Copenhagen
- OCT 2014
- Additional card sets are available
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CONTACT
The Author (Richard fenker)
Ideas and Suggestions on the Cards and Methods for Using Them
rich@richardfenker.comSales of Books or Cards, Marketing Opportunities & Special Events
Information on the Non-English Versions
rich@richardfenker.com -
NEWS
The Alzheimer's Cards: We are excited to announce the launch of our initial testing program for the late-stage and mid-stage Alzheimer's cards in September 2013.Cimarron Press announces that it will use Ingram's Lightning Source Division to print The Long Moment. This means that the first edition will be in color! Ingram will also join Cimarron as the primary book distributor giving us access to multiple retail and global channels.
International Book Launch: The Long Moment will be featured at the International Book Fair in Frankfurt in October!
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TEAM
The Alzheimer's Cards' team consists of Alzheimer's experts, caregivers and individuals with Alzheimer's who work with us to create and improve our products and to provide free access to many of these products through our website.
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JOIN US
We are most interested in receiving ideas and feedback on how to improve the Alzheimer's Cards, the methods for using the cards, new ideas for cards and other information that can help enhance the communication skills of Alzheimer's individuals and the quality of their lives.
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THE ALZHEIMER'S CARDS
What are the Alzheimer's Cards?
The Alzheimer’s Card Decks are sets of cards designed to be used as a communication device during the middle and late stages of Alzheimer’s disease when verbal/logical speech patterns have deteriorated. The cards are intended, largely for the Alzheimer’s patient, to provide a voice expressing their needs, feelings, and intentions. Many of the cards can also be used by caregivers to communicate, especially when a normal conversation is not possible. Caregivers of course have needs and feelings too and many times would like to share a message with their companion but cannot.Why will I want to use them?
As Alzheimer’s disease progresses, many of the normal channels of communication with your friends such as having a conversation or writing a letter will diminish over time until they no longer become a reliable way of sharing your feelings, ideas, or needs. As you can already imagine, this deterioration in everyday communication ability is enormously frustrating especially when you want or need to share what is on your mind with caregivers but cannot. The Alzheimer’s Cards offer a new way of communicating that will remain alive and working long after traditional speech becomes problematic.How Will I Use the Cards?
Detailed instructions are included with the cards and in "The Long Moment" book. Basically you, the caregiver, will share the cards with your friend or family member and teach them to use the cards to say what is on their mind. Often they will have something to say that cannot be communicated directly in a conversation because of diminished verbal skills. The cards can also be used as an activity to help pass the time. To improve communication we recommend that you use a regular protocol for working with the cards. Once the process has started you can use them in a game format, a structured format tied to specific communications, a random format or in any other format that works for the specific caregiver and Alzheimer's patient.Connections that endure over time
Very little is known about tools or information that when used in the early stages of the disease provide comfort and aid communication in the later stages. Imagine how helpful it would be if the Alzheimer's cards or other tools could provide such a link. What if exercises on crucial everyday behaviors could be practiced in the early disease stages and then, aided by the cards, used in the later stages? Perhaps this is a fantasy but we don't think this is the case. Our goal is to learn enough to develop cards and apps that help make connections which do endure over time.
Late Stage Cards
The Late-Stage Cards are designed for individuals who have reached the point where communications need to be simple, clear and concrete. Each card's message is carried in one or two words and a simple image that communicates the same thought or idea. The core Late Stage Card Deck consists of 8 cards in each of 8 categories and include: Food & Drink, Emotions & Feelings, Places, Guided Journeys, Aches & Pains, Needs and Activities.
Mid Stage Cards
The Mid-Stage Cards are designed for people in the early to middle stages of Alzheimer's. The complexity of the cards allows for more subtle communications where the idea is clearly understood by the person with Alzheimer's but difficult to express verbally. Practice with the Mid-Stage Cards may also enhance communication in the later stages.
Special Card Holder
This custom, handmade folder for caregivers allows you to display up to 8 card categories at once and quickly select the set of cards of interest. It is also useful for storing the cards after your session is finished.
Complete Caregiver's Toolbox- Long Moment Book
- 1 Professional Card Holder
- 1 Deck Mid-Stage Cards
- 1 Deck Late-Stage Cards
- Instruction Books for the Cards