Should I travel with my loved one with dementia?

Here is an edited excerpt from the latest issue of Wiser Now Alzheimer’s Disease Caregiver Tips that focuses on traveling with and without your loved one:

Many years ago I had an offbeat friend from Michigan of Czechoslovakian heritage whose sister married a Texan. At the wedding reception, all the northern guests were taught country line dancing as a way of introducing them to the southern culture and welcoming them into the family. My friend felt that courtesy called for an equal gesture on her family’s part, so she gathered them together, and on the spot made up a Czech folk dance which they dubbed the “Klotzky,” whose chief feature was “a jump step” and flailing arms. It was an immediate success, and I am told is now featured at all family gatherings. If your family is equally spontaneous, consider taking your family member with dementia anywhere you want to go.

Families who have more in common with Auntie Mame than Amy Vanderbilt, who delight in the possibility that anything might happen and can always be counted on to go with the flow are likely to put your loved one with Alzheimer’s disease at ease at many events. The challenge with graduations, weddings, high school reunions, vacations and family reunions is that your loved one is likely to encounter many unfamiliar people, places and situations that your understanding family members may not be able to protect him from.

Before embarking on a trip across time zones or state lines, ask yourself, in what ways will my loved one or others benefit by taking this trip? If your first grandchild is getting married, for example, and your loved one has long been close to his granddaughter, the extra effort required in making the trip may be worth it for everyone involved.

At the same time, set realistic expectations. If your granddaughter wants her grandfather at her wedding, but hasn’t seen him in a year and your gut feeling tells you that he will be more upset than pleased by the event, go with what will be best for his well-being. Will your loved one with dementia be comfortable in this out-of-the-ordinary setting, or will he be frightened by the crowds, bored by the ceremony, and quickly fatigued by the unaccustomed hullabaloo?

Think of your own ease as well. Are you worried that he might speak his mind at inopportune times, that you will have to constantly look out for him in order to protect him from others who are unaware of his limitations, and that in so doing you won’t enjoy the event yourself?

Think of your granddaughter, too. The focus should be on the people getting married, not on your loved one. If you, he or they would ultimately be more comfortable if he were not there, make arrangements for him to stay behind. If you think he could handle the wedding but not the reception, make arrangements for him to attend only what is most appropriate, and be ready to revise your plans as needed if you guessed wrong.

Not everyone lives in a wild and crazy Auntie Mame-style family, and that’s fine. When considering whether or not to take your loved one with dementia to a family affair, weigh what’s fair for all involved.

To subscribe to Wiser Now Alzheimer’s Disease Caregiver Tips, click here.

Resources for Alzheimer’s caregivers

One of the pure joys of working in a field like aging is becoming connected to a network of amazing people doing phenomenal work. Following is a brief list of resources and people (many of them friends) I admire and have learned from. I will be adding more over time, but there are already more in my books and products, and the website http://www.wisernow.com/.

The Alzheimer’s Store (http://www.alzstore.com/) is an outgrowth of architect Mark Warner’s comprehensive book, The Complete Guide to Alzheimer's Proofing Your Home. Through the store, he and his dedicated wife Ellen offer a wide variety of assistive devices, print resources and activity products. Mark has also written another book on safeguarding people with dementia who have a tendency to walk away from home, he produces the free Alzheimer's Daily News (http://www.alznews.org/) and he speaks and consults through his company Ageless Design, (http://www.agelessdesign.com/).

• To order The Complete Guide to Alzheimer's Proofing Your Home, click here.

Virginia Bell and David Troxel are the wonderful authors of a growing and enduring series of books which began with The Best Friends Approach to Alzheimer's Care in 1996. They are also delightful speakers and consultants. Check out their website at http://www.bestfriendsapproach.com/ or contact David directly at bestfriendsdavid@aol.com.

• To order The Best Friends Approach to Alzheimer’s Care, click here.
• To order The Best Friends Staff: Building a Culture of Care in Alzheimer’s Programs, click here.
• To order The Best Friends Book of Alzheimer’s Activities, Vol. 1, click here.
• To order The Best Friends Book of Alzheimer’s Activities, Vol. 2, click here.

Elizabeth C. (Betsy) Brawley is the author of two terrific books on environmental design for older adults: Designing for Alzheimer's Disease: Strategies for Creating Better Care Environments and Design Innovations for Aging and Alzheimer's. She is also an extremely knowledgeable consultant. You can reach her at Design Concepts Unlimited (Sausalito, CA) by calling 415-332-8382 or emailing her at betsybrawley@att.net.

• To order Design Innovations for Aging and Alzheimer’s, © 2006, click here.
• To order Designing for Alzheimer’s Disease, Strategies for Creating Better Care Environments, © 1997.To order click here.

Dan Kuhn, currently the education director for the Greater Illinois chapter of the Alzheimer’s Association, is the author of Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers, a terrific resource written with compassion and insight. Dan.Kuhn@alz.org.To order, click here.

Dorothy Seman has always been my moral compass in terms of how to treat people with dementia with dignity and the highest respect for both who they once were and still are. She is a co-author of Rethinking Alzheimer’s Care. Never miss an opportunity to read her work or hear her speak. Dorothy.Seman@med.va.gov. To order, click here.

Carol Sifton’s latest book is Navigating the Alzheimer's Journey: A Compass for Care-Giving. Like her previous book, it is both thorough (652 pages) and compassionate, filled with stories of real experiences with real people, and well-considered advice. Carol is also available for training and consulting. Call her at 902-634-3904 or email her at csifton@ns.sympatico.ca.

• To order Navigating the Alzheimer's Journey: A Compass for Care-Giving, © 2006, click here.

Joyce Simard is the author of The End-of-Life Namaste Care Program for People with Dementia. She chose the word “Namaste” because it means, “I honor the spirit within you,” which clearly suggests the compassion with which she approaches the dying process. However, Joyce is primarily a high-energy person with a laugh that tends to burst out easily. Therefore, her second book, The Magic Tape Recorder, was written as “Grandma Joyce” for children to explain how they can be helpful to people with dementia and other disabilities. With its delightful, full-color illustrations, it is probably a closer reflection of her personality. You can reach her at http://www.grandmajoyce.com/ or http://www.joycesimard.com/.

• To order The End-of-Life Namaste Care Program, click here.
• To order The Magic Tape Recorder, click here.

Karen Stobbe has long experience in the theatre and that has made her one of the most engaging and creative (read “fun”) Alzheimer’s trainers I know. Plus, she freely shares her ideas at http://www.in-themoment.com/. She is also the author of the short book, Sometimes Ya Gotta Laugh, in which she provides insights and advice gleaned from her father’s journey through Alzheimer’s disease. Contact her at karenstobbe@charter.net and enjoy.

Jitka Zgola is a woman of far-ranging talents (occupational therapist, inn-keeper, potter, to name just three) who has written several books, of which the most enduringly popular is Care That Works: A Relationship Approach to Persons with Dementia. It combines innovative, yet practical ideas with Jitka's whimsical art work. She can be reached at giverny@ns.sympatico.ca or by calling 902-928-2399. And check out her Nova Scotia Bed & Breakfast, pottery and other artwork at http://.singingpebbles.ca/. To order Care That Works, © 1999, click here.