I will embrace the New Normal.
The grim truth about Alzheimer’s disease is that any previous definition of “normal” will be crushed under the overturned apple cart. The definition of New Normal looks nothing like the Old Normal of a predictable universe. New Normal is unfamiliar, hard to plan around, and riddled with unknowns and mysterious behaviors. New Normal requires a patient and flexible go-with-the-flow attitude. And remember that once you get used to New Normal, an even newer version will surely follow.
I will celebrate remaining abilities.
“Things could always be worse” is a cliché that must have been first written by an experienced Alzheimer’s caregiver. The nature of Alzheimer’s disease is that it is progressive… it does get worse. Whether a repetitive question or a rummaging habit has you longing for the day when the exhausting behavior finally stops, keep in mind that the ability to ask questions, look for things, manipulate objects, find words, and even walk will someday be a skill no longer possible for the Alzheimer’s brain. Do your best to view each behavior as today’s awesome skill. These are milestones in reverse.
I will educate myself about “what’s next”.
It’s hard to say, exactly, what lies down the road for the Alzheimer’s patient and his or her caregiver. As hard as it is to hear the painful stories of people further along in the journey, it is helpful to know what obstacles, challenges, and solutions others have faced. This is why support groups are so important. Gathering information about changes in the brain, techniques to promote abilities, and tips for providing care are necessary tools for proactive caregiving.
I will plan on “me time”.
Sometimes the best thing you can give an Alzheimer’s patient is a happy and healthy caregiver. There are people in your life who may want to help, but don’t know how. You, caregiver, need to ask for “me time”. You need to get a haircut, go for a walk, and grab lunch with friends…. You need to continue to live your life. Ask a friend or neighbor for a couple of hours of respite. Hire a high school kid to play cards or watch tv for an afternoon. Look into day programs or companion care. Even if you don’t think you NEED “me time”, you absolutely do.
I will tell my story.
Every think tank, task force, panel discussion, television show, radio program, speaking event, and congressional meeting I’ve been a part of knows the value of a good story. I am constantly being asked to share stories from the trenches that help relate a clinical disease to human suffering. Real-life testimonials are the most powerful agents of change. It is IMPERATIVE that you tell your story. The world needs to know the impact Alzheimer’s disease has had on your family. Without your story, Alzheimer’s disease loses it’s one-two punch… the impact on the person with the disease and the indirect suffering of the caregiver. If you want to see a world without Alzheimer’s, you must make noise. Advocate. Please, take time in 2014 to share your story.