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Talking to Children about Alzheimer’s

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By Mary Adam Thomas

“The worst thing is the kids. I don’t know how long it’s going to take before I won’t know them.” Betsy Meyer of West Seattle, Wash., identified this wrenching reality soon after she was diagnosed with Alzheimer’s disease (AD) in 2000. In her case, the difficulties of discussing her condition with the children in her life were exaggerated by the fact that she was their parent, not their grandparent. Her early-onset AD was identified when Betsy was only 46 and her children, Alex and Emily, were just 13 and nine. Betsy Meyer passed away in December 2008.

“We had talked to the kids so much about the memory issues that Betsy had been facing, but we hadn’t talked to them about the fact that what she had was terminal,” recalls Betsy’s husband, Jeff Meyer. “So that was the hardest discussion we had to have.”

Talking to children about a parent or grandparent with Alzheimer's disease helps them understand.

Range of Responses
Jeff joined Betsy, who was still lucid enough two years post-diagnosis to engage in the conversations, to speak individually with their children about her prognosis. “We sat down first with Alex, who was 15 then, and talked to him about Alzheimer’s and how it would shorten Betsy’s life,” Jeff says. “He hugged her and it was very emotional, very tough. We got through that, and knew we had to do the same with Emily, who was 11.

“But her response was very different; she was totally reserved and matter-of-fact, like ‘Oh, and what’s for dinner?’ That was her outward response, so who knows what was going on inside,” remembers Jeff.

Later, Emily started a blog about her experience and got involved in Alzheimer’s Association activities such as the Memory Walk. All this showed that she simply needed to embrace the diagnosis in her own ways and on her own terms.

After Betsy died (when Emily was 18), Emily pointed out that her mom was memory-impaired for half of Emily’s life, and that Alex had four more years of childhood with his mom before her diagnosis.

Starting the Discussion
Most children who are affected by AD watch the cognitive deterioration of elderly relatives rather than their own parents. Still, the Meyer family’s experience offers an important example of the ways in which individual children respond, communicate and cope differently. Parents faced with this challenge can use the following tips to help ease the burden.

Keep Talking
Given the often drawn-out nature of AD, consider the conversation less of a speech and more of a process, regardless of the age of your kids.


Common Responses Among Children. How children respond to the news of a parent’s or grandparent’s Alzheimer’s diagnosis varies by age. Following are typical responses for each age group:

Young Children

Teenagers

Parents

From: The Alzheimer’s Disease and Related Disorders Association, Inc.

Source: www.ALZinfo.org. Author: Mary Adam Thomas, Preserving Your Memory: The Magazine of Health and Hope; Summer 2009.

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