(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.
The Persistence of Memory
Create a Safe Home Environment
by Karen Favo Walsh
Creating a safe home for an Alzheimer's patient is similar to child-proofing for babies and toddlers. Look around your home. Do you see any possible dangers? You want to create the safest environment possible.
Clutter, chemical cleansers, objects with sharp edges, and valuables should be put away. Alzheimer's patients move fast, so don't assume you'll catch someone before harm occurs. Make life easier for both caregiver and patient by anticipating problems and taking steps to prevent them.
Household cleansers stored under the kitchen sink may have been fine for years. Bleach mistaken for a drink or dish soap used as food, just once, can cause severe trouble. Don't risk it. Put a child-proof lock on cabinets. Remove dangerous substances and lock them in a place the patient can't find or reach. It may be inconvenient, but peace of mind is worth it.
Alzheimer's patients lose coordination and balance with the progression of the disease. Look at your home's floor plan. Does clutter block passage ways? Can you remove it to make wider spaces for your patient to pace? Throw rugs could slip and cause a fall. If you have a staircase that is hard for your patient to maneuver without supervision, restrict access. This can be done with a child safety gate, or locked door.
Here is something I learned the hard way. Your patient's shoes should be a good fit not just in size, but also in style. I bought expensive, sturdy boat-style tennis shoes for Billie. I thought they would provide strong support for her feet during her nonstop walking phase. The shoes appealed to Billie and looked great. However, they were heavy and caused blisters on her heels. A nurse suggested a switch to lightweight, canvas slip-on shoes. We did, and that solved the problem.
Many Alzheimer's patients shuffle, rather than walk. Shuffling wears the tread down quickly. Check the soles of their shoes often. Little or no tread means a higher risk for slips and falls.
Safety also means a secure house and yard. Lock exit doors and garden gates so your patient can't wander outside and get lost in the neighborhood. Locks at the very top or bottom of a door are effective. Most AD patients won't notice the extra lock. On the flip side, in the bath and bedroom, you don't want a patient to lock themselves inside. Make sure doors to bathrooms and bedrooms can be opened from the outside when necessary.
Child safety handles and child-proof locks on doors, drawers and cabinets are a good solution that allow dangerous substances to remain in the usual places, while eliminating a patient’s access.
HERE ARE A FEW MORE CONSIDERATIONS:
KITCHEN: Remove knobs on the stove to prevent accidental fires, or gas left on. Don't leave medicines, or vitamins on the window sill. Even baby aspirin is dangerous if eaten like candy. Remember, as the disease progresses, your patient won't be able to read labels or directions.
BATH: Toiletries can be confused or misused. You don't want triple antibiotic used as toothpaste. Challenge yourself to anticipate ways harmless items can become dangerous, and troubleshoot before a problem arises.
LAWN/YARD: Remove or lock away pesticides, fertilizer and sharp gardening tools.
SWIMMING POOL: The pool should be enclosed with a fence or inaccessible to the patient. Do whatever is necessary to guarantee your patient doesn't fall into the water.
SMOKING: Sometimes, it is hard to convince a patient to stop smoking. If that's the case at your house, allow smoking only with supervision. Short-term memory loss means your patient can forget between puffs that he has a lit cigarette. If you're the smoker, don't leave matches, lighters or cigarettes sitting around.
It isn't only the patient's confusion and memory loss that cause trouble. Hearing, sight and depth perception losses are real symptoms of Alzheimer's. Making your house safe for an Alzheimer's patient can save a lot of heartache.
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The information provided is for informational purposes only.
It is not intended to replace or substitute for medical, legal
or financial advice.
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 ALZHEIMER'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
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