Four million Americans currently suffer from Alzheimer's disease and experts estimate that 22 million people around the world will be so afflicted by 2025. Far too many families are struggling with the emotionally and physically draining responsibility of redefining their relationship with, and caring for, someone who not long ago was a vibrant member of society, yet may not know their own name today.

A Dignified Life helps combat the burnout and frustration that often accompany the task of caring for an Alzheimer's patient. Author David Troxel, an Alzheimer's expert and executive director of the California Central Coast Chapter of the Alzheimer's Association, maintains that at its simplest this approach is based on treating the person like a best friend and working from their strengths, not their weaknesses. He explains: "As family members, caregivers and professionals, we have to try to connect with them. People with this disease in some way need someone to be . . . attentive and empathetic--someone who really tries to walk a mile in their shoes."

A Dignified Life goes beyond the typical tips offered by most books and takes advantage of readers' instinctive desire to build friendships and taps into the intuitive aspect of caregiving that is part of our very nature. It provides a complete model for care built around creative and effective communication and meaningful activities and includes touching stories that demonstrate how the Best Friends method continues to improve the lives of both those who have Alzheimer's disease and those who care for them.

Chapter 4
A New Start
The Art of Friendship

Alzheimer's disease changes us all. Because of the associated memory loss and confusion, your mother, father, sister, brother, husband, wife, or partner may no longer know you or understand his or her relationship to you. Many caregivers are confused, frustrated, sad, or even angry about these losses. Your mother may have always been your closest confidante and strongest supporter; now, she does not recognize you. A spouse whom you counted on for many years to balance the checkbook, pay bills, file the income taxes, or cook three meals a day is no longer able to do these things. As a result, your relationship with the person changes whether you like it or not.

Adopting a Best Friends approach can help diminish this pain and loss and can have a powerful impact on the person with dementia. When you rethink, or recast, your relationships to individuals with dementia and become a Best Friend to them instead of just a caregiver, the person now feels you are on his or her side. In addition, friendship helps evoke some of the social graces or learned manners of the person with dementia. It helps put the person on his or her best behavior.

Caregivers using the Best Friends approach have made the Helping Hand day program of the Greater Kentucky/Southern Indiana Alzheimer's Association one of the most admired adult day programs in the United States. Many individuals with dementia in Helping Hand have been considered difficult and challenging by their own family caregivers. Yet at Helping Hand, because the staff and volunteers are acting as friends, they thrive. Families can have similar success using the Best Friends approach at home.

Rather than staying in a state of despair, caregivers can learn to work through the pain and focus on gaining maximum value from the present; caregiving is transformed from a terrible burden to a job that becomes meaningful and satisfying. The process changes from a series of failures to a series of successes. Recasting this relationship to become a Best Friend does not mean taking away love or loving the person with dementia any less. It simply means approaching the relationship differently.

One caregiver told us that he had always had a troublesome relationship with his father-so bad, in fact, that he ran away from home at age 16. He now cares for his father full time and says they have never been closer. They take a daily walk together, have an evening scotch and soda, and watch the grandchildren play soccer. They have found that they now enjoy each other's company. Because the father has forgotten much of the past and is often unsure of his relationship with his son, the son has realized that he, too, must let go of past slights and injustices. "What's the point of me dwelling on it?" the caregiver asks. "What's past is past."

Phil and Karen Zwicke renewed their marriage vows after 10 years of marriage. Surrounded by friends and family, the couple enjoyed the afternoon including champagne and wedding cake. Phil, 52, has been open with others about his diagnosis of Alzheimer's disease; both of them are determined to keep him active and enjoying life as long as possible.

Maria Scorsone has spoken three languages in her lifetime: Italian as a child, Spanish when she lived in Argentina, and English after she moved to the United States. She now often mixes the three languages. Her in-home aides became her Best Friends by listening to Maria's words very carefully. When the aides cannot follow the exact words, they can usually still understand her by listening to the tone of her voice and watching her facial expression and other body language.

Edna Edwards loves to converse but has major difficulty finding the right words. When Edna says "Those little ones, I miss them . . . at the school . . ." her Best Friend says "Picadome School?" Edna can continue, "Picadome, that's my school!"

When Evelyn Talbott, a retired librarian, returned from a vacation, she would have been frustrated if someone had asked her to recall, "Where did you go on vacation," or "What was the name of the beach?" Instead, a friend asked skillfully, "Did you and your husband, Bob, have a good time watching those big waves on the ocean?"

 

Because of Mary Burmaster's hearing loss, body language was especially effective for a day center volunteer relating to her. After making eye contact, the volunteer smiled and would say, "Mary, lunch is ready." The volunteer would then touch her gently on the shoulder, pat her hand, and guide her to the table.

There is so much in Jim Holloway's life to talk about: fishing with his uncle, raising German shepherd dogs, collecting yo-yos, studying great artists and their works, enjoying classical music, teaching theology, visiting Pompeii, attending Yale University, working on old cars, being a medic on a troop ship during WWII, and much more.

 

¬2002. All rights reserved. Reprinted from A Dignified Life by Virginia Bell, M.S.W. and David Troxel, M.P.H. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442.