If your spouse or parent has just received a diagnosis of Alzheimer’s, it may seem like your world is about to fall apart.
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Hearing the News
“What does that mean? “What do we do now?” are typical first thoughts, as is fear of the unknown, according to Chuck Fuschillo, Executive Director of the Alzheimer’s Foundation of America.
Reactions will range from surprise, denial, fear, helplessness, anger, or sad corroboration of declining function. Unfortunately, patients and caregivers can leave the physician’s office feeling adrift, without much tangible information to rely on.
Immediately following the news, it may be hard for people to take in any additional information anyway, because they are still trying to wrap their heads around the diagnosis, says Michelle Varegas, of the Family Caregiver Alliance, a non-profit advocacy group in San Francisco.
We had to research all of that on our own.
Depending on the provider, there may not be a lot of support available. “After that AD diagnosis, we weren’t given anything – no pamphlets, or handouts, or anything telling us what to expect,” explains Allen Vann, a retired middle school principal from Commack, NY.
His wife Claire was diagnosed eight years ago with early-onset Alzheimer’s. “There was no mention or discussion of support groups or websites or books. We had to research all of that on our own.” Vann eventually found a support group through the Long Island Alzheimer’s Foundation.
The good news: Eight years later, physicians are better trained in how to deal with the diagnosis and there are many, many sources of information available.
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