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.

Alzheimer’s disease and group singing

Barbara Jacobs is the creator of the video/CD series, “Front Row Seat” (http://www.frontrowseatvideos.com/) specifically designed for people with Alzheimer’s disease. Her formula for success working with people with AD is to lead a music class, not just a sing-along. She begins with a reminiscing warm-up activity, bringing in a CD, for example, of Nat King Cole or Judy Garland. After playing a song or two, she provides some brief information on the artist’s life (easily found on the CD cover or the Internet), and then encourages participants to share their memories and knowledge. The singing follows, helped along by large print copies of the lyrics, for those who want them.

There are many other ways to enliven group singing. Barb, as demonstrated on her CDs, adds such things as dancing, blowing bubbles and children to the mix. Another idea is to change the words. For example, the song “My Favorite Things” from “Sound of Music,” has been re-written in an aging version that includes these lines:
When the pipes leak,
When the bones creak,
When the knees go bad,
I simply remember my favorite things,
And then I don't feel so bad.

Parodies are fun to sing (and create), but a simpler way to change the words is simply to change the nouns. For example, change the:

• Flowers in “When You Wore a Tulip, and I Wore a Big Red Rose" (lilac and daffodil?)
• Ethnicity in “My Wild Irish Rose” (Mexican?)
• Name in any song that uses one, such as “I’m in Love with Amy,” (why not Nancy or Susie?) or “I’m Just Wild About Harry” (Why not Johnny or Jimmy?)
• Colors in any song that includes them (Why not red suede shoes, purple rose of Texas or blue cliffs of Dover?)

All of these ideas can also be used to start a reminiscence discussion on a musical theme, too. For example:

• Talk about colors participants like by singing songs like "The Little Brown Jug," "When the Red, Red Robin," and "By the Light of the Silvery Moon."
• Talk about the funny things you did when you were younger by beginning with silly songs: "The Flat Foot Floogie," "Mairzy Doats," and "Barney Google."
• Talk about names you like or how you were named by singing "Sweet Adeline," "My Bonnie Lies Over the Ocean" "Alexander’s Ragtime Band," and "When Johnny Comes Marching Home."
• Discuss your courting days and sing, "Love and Marriage," "I Want a Girl," "Let Me Call You Sweetheart," "Makin' Whoopee," and "Get Me to the Church on Time."

There are dozens more songs in each of these categories and dozens more categories that will stir up memories and start the toes tapping. One resource for ideas and trivia games with song titles is ElderSong’s “Say it with Music.” (http://www.eldersong.com/StoreFront.bok)

You can intersperse singing with discussion as Barb Jacobs recommends, whenever you need a change of pace. People with AD tend to be good at filling in the blanks when you say the beginning of a line or title to a song, such as:

• Hail, Hail . . . The Gang’s All Here
• I Wonder Who's . . . Kissing Her Now
• In the Good Old . . . Summertime
• Let Me Call . . . You Sweetheart
• You Must Have Been . . . a Beautiful Baby

You can also ask opinion questions about music: Do you like Big Band music? Do you enjoy close harmony singing like barbershop quartets or the Andrews sisters?

By Kathy Laurenhue, excerpted from Wiser Now Alzheimer’s Disease Caregiver Tips, (June 2008, Vol.9 Issue 5). Available from www.wisernowalz.com or www.wisernow.com.

Advice to caregivers: Judgment, Part 1: Don’t expend precious energy judging yourself.

Jack Paar once said, “Looking back, my life seems like one long obstacle race, with me as its chief obstacle.” Like him, many of us are our own worst enemies berating ourselves for our real or imagined mistakes that have been compounding since the days when we were students writing essays:

• In biology today, we digested a frog.
• A molecule is so small that it can’t be seen by the naked observer.
• Our biology class went out to explore the swamp and to collect little orgasms.

We all make mistakes. Yet happiness and self-esteem must come from within, from accepting ourselves as we are. Remember that if you worry what people think of you, it means you have more confidence in their opinions than your own.

Avoid these self-criticisms:
Mind-reading. Last week I borrowed a colleague’s office to make a phone call. When she walked in on me, she gave me a withering look. Thinking I was reading her mind, I started to apologize for invading her space. Instead she told me she was late coming in because she had just been through “banking hell.” Blaming ourselves for others’ discomfort is usually ridiculously self-centered.

Viewing a negative event as a never-ending pattern. Just because your loved one has fought attending day care for three weeks straight does not mean she will never adjust or that you were wrong to send her there. Many a person has left the dock just before his ship came in.

Fortune-telling. “Getting him to bed tonight is going to be a disaster.” If you’re going to predict the future, at least make it positive. If you cannot help worrying, remember that worrying cannot help you either.

Perhaps the most important key to taking yourself lightly is to move on. Charlie Brown once said, “I’m still hoping yesterday will get better.” It’s amazing how many of us keep trying to improve the past, when we can’t even count on doing well in the present. As Josh Billings noted, “Experience increases our wisdom, but it doesn’t reduce our follies.”

The toughest kind of mountain climbing is getting out of a rut.

(Excerpted from Wiser Now Alzheimer’s Disease Caregiver Tips)

A message to caregivers

A few years ago, my daughter and I had the tremendous experience of riding mules deep into the Grand Canyon from the North Rim. The mule team leader, easily seeing my inexperience, assigned me to a mule named Maude, a gentle creature who chose her own pace. She was particularly immune to prodding on the return, uphill trip, and I soon stopped caring that I was causing the last three mules to lag behind. But that’s when I also learned she had been misnamed. To put this as delicately as possible, she ought to have been named Tooter. She was not in the least discreet – indeed, there were times when she sounded like a trumpet in a John Phillips Sousa marching band. The mule path was also shared by hikers, and she startled quite a few of the adults. Children found her hilarious, of course. (Frankly, so did I.) One hiker thought she might be pregnant. She was momentarily quiet as we passed, so I didn’t enlighten him to the true cause of her distended belly. However, when we finally returned to the stables, she gave a whole new meaning to “running out of gas.”

The young woman on the mule behind mine showed infinite patience (but tended to keep her distance) at one point saying, “Whatever gets her up the hill.” The life of a caregiver is often stressful. Any caregiving book worth its salt will admonish caregivers to take good care of themselves: eat a balanced diet, get enough sleep, exercise regularly, surround yourself with cheerful friends and keep a positive attitude. But the reality is that sometimes caregiving is a steep journey with a heavy load. Sometimes the unhealthy comfort food or the foregone exercise class is what gets us up the day’s hill. Remember Maude, set your own pace, and make no excuses.

(Excerpted from Kathy Laurenhue’s Alzheimer’s Basic Caregiving – an ABC Guide)