Our thanks to author Susan Garbett for contributing this article.
The media and some commercials would have us believe that Alzheimer’s is just a disease of memory. We know it can also affect perception, behavior, personality, language dysfunction, visual and motor skills, and much more. Being diagnosed with Alzheimer’s should not be looked as an immediate death sentence. Generally speaking, Alzheimer’s is a slow insidious disease that progresses in stages. Within these stages there can be periods of near normalcy—a lucidity which can bring joy, humor, and pleasure for everyone involved.
Most people don’t think of joy when they think of dementia. How can one find joy within a progressive degenerative disease that robs people of the very essence of who they are? Yet, when caregivers let go of any negative thinking about what once was, or what could have been, in order to embrace what is happening right now, they have the opportunity to create gratifying experiences for and with their loved one.
The key to creating these moments of joy is to enter their world and learn to be the person’s initiator or engager. Many patients’ long term memory is still a viable part of them. However, many have lost the ability to start things on their own, be it conversation or daily personal tasks, etc. If you ask someone who suffers from Alzheimer’s to sing God Bless America, their response may be a blank stare. But if you begin, “God Bless America, land that I love…” you may ignite a spark, triggering a memory which enables them to sing along with you, mouth the words, hum, clap, etc. You may want to download favorite songs from the past and make a song book to use anytime, but especially when your caregiving becomes overwhelming and exhausting, or when someone is uncomfortable during their visit. Music is a great stress reliever for both the caregiver and the patient. How can anything be wrong when you’re singing?
Try to keep them engaged with photos, magazines, props, religious books, just about anything you feel can provide them with a meaningful connection. The possibilities are endless and the rewards can be incredible. Be inventive and don’t worry if you’re not successful every time. It takes planning and practice. Will they remember the time you spent together? Probably not. It’s not about you. It’s about creating these special experiences, just you being present, and the feelings you leave with them that are important. It doesn’t have to be a big event. Sometimes a smile, a hug, or just holding their hand is all that is needed.
Susan Garbett is a support group facilitator for the Alzheimer’s Association, Florida Gulf Coast Chapter and author of Susie and Me Days: Joy in the Shadow of Dementia. She currently leads educational programs about Alzheimer’s with tips, strategies, and interventions for caregivers and families. Contact Susan at 941.356.4365 or firstname.lastname@example.org.