WINNEMUCCA - An Alzheimer's victim may appear lost, befuddled, and utterly confused, but underneath it all remember the loving individual who rests within the arduous folds of this incurable disease. I encourage family members to recall the good times, the fun, and lasting recollections and to set aside the hurt and pain that may exist now. Mom is still Mom - in spite of her foibles. Dad is still Dad regardless of his idiosyncratic behavior. And Grandma and Grandpa - deep within remain wondrous seeds of love and caring. It requires focus and hard work to recall the goodness but trust me, it's there.
Holidays are a time for gathering and sharing. Maintain strong relationships by including the Alzheimer's victim as well. While 300-mile car trips and intricate decorating are out of the question, simple visits and projects work well. Be sure to tap into your "Extra Patience" bank just in case of quirks, but your thoughtfulness and giving of time will be appreciated.
A drive to see neighborhood lights and decorations can be rewarding when you plan ahead. If darkness is frightening, head out in the daylight. If getting into the car is mass confusion, prepare ahead to guide the victim to sit in the seat and then allow you to help lift in both feet. Alzheimer's victims tend to climb into a car as if mounting stairs, only to find themselves backwards, sideways, wedged, and angry. A short trip is perfect and if bravery seeps in, stop by for a visit with Aunt Theresa or get a snack at a favorite stop. As long as your loved one remains happy, your trip will run well.
While traveling I witnessed a husband and wife out for lunch. He was in a wheelchair and appeared to be recovering from a stroke. His gentle wife fed him, wiped his mouth, laughed, and loved. While at first my heart broke and tears slipped from my eyes, I then accepted that dear wife had the best intentions and her husband seemed pleased to be treated with her soothing dignity.
Music often brings joy to Alzheimer's victims and Christmas carols work perfectly. Most are familiar, the tune and the words, and you may find that Uncle Merle who rarely speaks is able to sing every note and word. I remember Carole in one of her last Christmases as we ventured to a shopping mall. I held her hand (as you will recall she was an excellent escape artist if my eyes wandered from her care) as we rode the escalator. "Silver Bells" began to play. Carole sang and swayed and smiled in delight. As we unloaded from the ramp she danced a short jig as she continued the melody. It made Christmas, holidays, family, and my sister miraculous and wonderful.
Decorating cookies, the tree, and the mantle are doable with most Alzheimer's victims. Does it really matter if Santa is sideways, the cookies have frosting blobs with gobs of sprinkles or that the holly and the ivy hang precariously above the upside-down stockings? These activities build relations that create memories that will survive for a very long time. What better legacy to give children than engaging time with family. Children are so adept at understanding the importance of interaction with a loved one while remaining non-judgmental and forgiving. While adults may be livid and distracted by failing health from an unrelenting disease, kids live in the present with thoughtful compassion.
Sometimes being in public can be harrowing for victims and caregivers. If you have decided to have breakfast or lunch out (dinner and darkness often do not mix) and have borne evil stares, whispers, and ridicule in the past, this remedy may work. Make notecards with a special message such as "Patience, please. My loved one has Alzheimer's disease." You can have these printed, make your own with the computer, or use notecards that you have on hand. Usually outsiders' rudeness is misguided beliefs. A little reminder may work wonders as you protect your loved one from discourtesy and teach a lesson at the same time.
Once while dining out with Carole we encountered the "gawkers" and the "lovers". When Carole decided that she was tired of sitting with family, she stood up to find new friends. The "gawkers" shoved her away and filled the spare seat with a purse. The witnessing "lovers" patted their empty seat and welcomed my sister as a pal. Hmmm, good people make such a benefit to the world.
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