Raising Awareness About Dementia, Offering Support

Raising Awareness About Dementia, Offering Support

July 13, 2018

When William “Bill” Zeckhausen found himself forgetting appointments and losing his place in his sheet music during chorus rehearsal, the idea that he might have Alzheimer’s or another dementia quickly became his worst fear. His mother had had dementia.

Bill did nothing except hope his friends and family would not notice his absentmindedness. About a year later, after seeking—and receiving—an official diagnosis of Alzheimer’s in 2015, Bill battled severe depression. Then, he decided that he wanted to funnel his energy into raising awareness about dementia in hopes of giving people a language for discussion and so that he might find meaning in his experience.

Last month, Bill and his wife, Barbara, presented a poignant talk on their experiences as patient and caregiver in a program called “The Search for Meaning: The Journey Through Alzheimer’s” at Glenmeadow. It is one of a series of programs we are holding to help raise awareness about dementia, provide support to people living with dementia and their families, and work to eliminate the stigma that accompanies it.

As a life plan community, we have renewed and enhanced our focus on Alzheimer’s and dementia care, and we are a partner in the Dementia Friendly Longmeadow initiative.

This month, we will also offer our first Memory Café on July 25 from 1-2:30 p.m. Caregivers are invited to bring a loved one to Glenmeadow to enjoy an organized activity and conversation with others. Learn more or register by calling Laura Lavoie, director of life enrichment, at 413-355-5905.

In their June presentation, Bill and Barbara told their story of diagnosis and care, and Barbara shared tips that are critical for caregivers to understand.

The Zeckhausens live in New Hampshire and were connected to Glenmeadow by Dianne Doherty, a Glenmeadow corporator and past board member and a longtime friend of Barbara’s. In introducing Bill and Barbara to our audience of nearly 100 area residents, Dianne said she had known Barbara for over 50 years; they met at Mount Holyoke College, where they lived together in their sophomore years.

These tips were among those that Barbara shared:

• Take care of yourself, as the primary caregiver.
• Call a lawyer to discuss estate planning documents immediately after an Alzheimer’s diagnosis—while your loved one can still participate in discussions.
• Involve family in discussions on end-of-life care.
• Understand the Alzheimer’s journey can be a long one that advances over 10 or more years. Live into those years, and see each moment as a new adventure.
• Have patience. Your loved one will do things such as lose track of objects—or time—and might become aggressive. Have a thick skin, and remember that the disease is the aggressor, not your loved one.

The Zeckhausens say this information is critical after an Alzheimer’s diagnosis: how to reach the national Alzheimer’s Association, 1-800-272-3900; the book Alzheimer’s From the Inside Out, by Richard Taylor, a psychologist with Alzheimer’s himself; and the knowledge of the importance of being open about the disease.

“A common, understandable response to the diagnosis is to try to hide it from others, which sooner or later becomes impossible,” Bill wrote in a letter to the editor to his local newspaper after he committed to speaking about his experience. “It is such a relief to become open about it, which the Alzheimer’s Association emphasizes is most important for security, and not becoming isolated and withdrawn in the first and second stages.”

Barbara says, “Bill’s meaning now is telling people about this disease and being a spokesperson. It’s something so many people suffer from, and so many people are caregivers, too. It’s something that needs to be talked about. Don’t isolate yourself.”

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