(Speech given at the Candelight Vigil in Lakeland, November 2004)
Alzheimer's disease reminds me of the famous surrealist painter, Salvador Dali.
The first time I visited the Dali Museum in St. Petersburg, Florida, was twenty years ago. My friend Dave and I wandered aimlessly through the galleries. As we viewed painting after painting, we were baffled. Why did a man who painted a basket of bread real enough to eat, portray people with rectangular holes in their torsos?
Dave and I returned to the museum the next day and took a guided tour with a docent. The information and interpretation our guide provided helped us understand. We learned about the artist and the surrealist movement. We discovered Dali's motivation, and saw the nuances and repetitive themes in his paintings.
Alzheimer's disease, like my first encounter with Dali's art, is different, surreal, odd and yet, somehow familiar. Like most caregivers, I thought I could decipher Alzheimer's alone. That wasn't true. I needed help with the interpretation and facts.
Dali said he painted, "to help discredit completely the world of reality." One of his most famous works is titled Persistence of Memory (1931). It's a stark landscape with a leafless tree on a barren, box-like cliff. The melted watches in it, Dali explained, show time has lost all meaning; and thus he ventured, all permanence was gone. Alzheimer's is like that, too.
I learned from Alzheimer's, as well as Dali, that common reality can be suspended. Names, hometowns, and traditional relationships don't matter inside the disease. My mother-in-law, Billie, couldn't remember my name. She called me, "that girl," or "her." It made me sad until I realized my name was irrelevant.
Each morning, Billie extended her arms to me and exclaimed, "Well, look who's here. I haven't seen you in years!"
The new reality of our relationship was Billie liked me, whoever I was. Her memory loss made each meeting a jubilant homecoming. We shared joy found in surreal places. I like to believe there was some persistence to Billie's memory that made me familiar, at least.
National Alzheimer's Awareness Month is our chance to remember, educate and share what we know about Alzheimer's disease. Soon everyone will know someone, or care for someone, with Alzheimer's.
If you are friend to a caregiver or Alzheimer's patient, choose a time in November to donate a meal, provide an afternoon of respite, run errands or just listen at the end of a difficult day.
If you are a caregiver, please ask for help. Take advantage of adult day programs and the resources available from the Alzheimer's Association. Don't wait until you're exhausted and overwhelmed. There are many people who understand Alzheimer's and will help you navigate its surreal path.
This November, we can honor those who suffer from Alzheimer's with our own persistence of memory. Remember to share what you learn. Talk about your experience with family, friends and new caregivers. Join a support group, or create your own. Awareness and knowledge will help us solve this mysterious disease.
Do You Suspect Someone You Love Suffers from Alzheimer's Disease?
You're not alone. According to a worldwide estimate by Alzheimer's Disease International, eighteen million people currently have Alzheimer's. Millions more are caregivers.
This Web site includes information, stories and tips designed to help and comfort Alzheimer's caregivers. It's an extension of the book: Alzheimer's Stories. A Caregiver's Guide to Mismatched Outfits, Goofy Hair and Beer for Breakfast by Karen Favo Walsh.
(Speech given at the Candelight Vigil in Lakeland, November 2004)
by Karen Favo Walsh
You know it's coming. Clues surface near Halloween. The holidays and all their hectic tidings of joy appear before we plan the Thanksgiving meal. Here we go again!
Holidays can be stressful for anyone. Add the responsibility of caring for an Alzheimer's patient, and you have potential for a chaotic season of stress overload.
Or, you can adopt our "less is more" approach this season. You can ease your responsiblities, and give you and your AD patient a legitimate chance to enjoy the holidays.
Alzheimer's changes the way we live. Acknowledge those changes and you can release traditions that turn into burdens for a caregiver.
Instead of a "to do" list, write a "don't" list. Choose what's truly important, then eliminate or delegate the rest.
Here's my personal example: Don't try to bake dozens of cookies in a kitchen where you have to keep a constant watchful eye on your AD person the entire time. Explain to family and friends that you're skipping the cookie baking this year because of caregiving duties.
This will do two things:
1. Make life easier for you
2. Let family and friends know your situation.
Don't pretend nothing has changed. Everything changes with Alzheimer's. Give family and friends a chance to understand. I know it's hard. No one likes change, but you have to let people know. You may encounter resistance to your plans. Stay strong. If someone can't live without your sugar cookies, share the recipe. Better yet, pass the baking tradition to the next generation.
BEYOND THE CAREGIVER
Holidays are hard for the person with Alzheimer's, too. Added stimulation in the form of visitors, crowds, music, and the frantic atmosphere found in stores creates extra anxiety.
Minimize stress by recognizing triggers. A mall full of people rushing through shopping will confuse a person with dementia. The loud voices and mall music can trigger a catastrophic reaction. A good indicator is if you feel stressed, your patient will too. Anxiety can result in a major behavioral change, or symptoms of stress that last for days.
AD patients tire easily. Shorten holiday visits. Skip large gatherings that may be hard on your patient. Consider using an Alzheimer's-specific adult day care service. Your loved one can attend for a few hours, or a few days while you lunch with friends, shop, rest, or enjoy a holiday party.
REDUCE AND SIMPLIFY
When you reduce activities and traditions to the few most meaningful, you create quiet quality time with family and friends. Below are a few ideas.
• Reduce and simplify. Less shopping, less decorating, less travel can result in more relaxation, more holiday spirit, more fun, more truly meaningful celebrations.
• Hang a wreath on the door instead of arranging a yard full of moving snowmen and lighted candy canes.
• Postpone, reduce or delegate holiday baking. Make a couple of pies rather than dozens of cookies. Or, buy your goodies at the bakery. They make their cookies with love, too.
• If your AD patient enjoys hanging ornaments on the tree, it's a fun, easy way to share a holiday tradition. The tree doesn't have to be perfect. In fact, the ornaments don't even have to stay on the tree.
• Decorate the house with simple greenery over the mantle or doorways. Try a floral centerpiece. It doesn't take much to spread the holiday spirit.
• Christmas cards. Send cards only if they're easy and you enjoy it. Save time and energy by photocopying one short handwritten note to include in all your cards.
• Don't create extra projects for yourself. Think of this season as a time to conserve your energy and enjoy the true meaning of the season: Peace on Earth.
• Ask yourself, must I do this activity this year?
• Ask for help. You don't have to cook the entire holiday meal. Repeat after me: pot luck dinner.
• Try to exercise, you'll feel better. Walk around your neighborhood and enjoy lights and decorations you didn't have to hang.
Less really is more. Pace yourself and your AD person, and the memories you make will be happy ones.
This article may be freely reprinted/redistributed in any medium
as long as the entire article and author biography are included.
Karen Favo Walsh is the author of Alheimer's Stories.
A Caregiver's Guide to Mismatched Outfits, Goofy Hair and
Beer for Breakfast. (ISBN 1-59113-418-8.)
Available online: http://www.booklocker.com/books/1428.html