Validation

This story unfolds in 2013 when Nan Rogers and her family began to suspect Alzheimer’s disease. Nan’s mom was living alone in Massachusetts, showing signs of confusion and memory loss. When Nan’s brother visited from New Mexico, recognition dawned that those changes could no longer be ignored.

At 86-years old Nan’s mom moved to an assisted living facility. Curious to learn about long distance caregiving, Nan turned to the Internet, searched the Alzheimer’s website and enrolled in a community based education program. All in the wake of her mother’s diagnosis: Alzheimer’s, Vascular Dementia and chronic depression.

During her research on the Alzheimer’s Association, Nan found information about a national telephone support group. “I’m all in,” was her immediate sense.

A trained facilitator from the Alzheimer’s Association leads the national group. They still meet monthly for 90-minute check-ins. After introductions that include only a first name and location, the support community discloses and discusses challenges faced by it’s members: only the challenges they’re ready to share.

Nan has near perfect attendance, missing only one meeting in three years. Why? “Because I get so much out of it, both information and support,” Nan beams, “Look at where I live, it’s rural! I went to Barre for a meeting but we only have one car and it was difficult to make that work.”

“Our facilitator is fantastic,” Nan shares, “she helps us focus on the emotion behind the behavior with this illness. The techniques I’ve learned have helped me to cope with the disease. A member of our family is in the midst of a gender transition and I didn’t know how to handle it with my mom. I mean she was already having a hard time recognizing us! Through support group discussion, I developed a plan and got my family on board. After all the preparation, Mom simply looked at us and said, ‘it doesn’t matter as long as she’s happy’. Thanks to my support group, we were prepared for any outcome.”

Nan is taking her experience to the next level. She’s working with Pamela Beidler, Alzheimer’s Association Program & Outreach Director to start a Vermont Telephone Support Group. Nan will co-facilitate the group with another trained and experienced social worker whose family’s been touched by the disease.

Together they’ll launch the Vermont group during this Alzheimer’s and Brain Awareness month of June. Why a dedicated Vermont telephone support group?

  • There aren’t enough resources to meet the needs of rural Vermonters.

  • Winter weather makes it difficult to get to support group meetings.

  • With the stigma around Alzheimer’s disease, it’s difficult to talk openly in small town settings about the challenges faced by those living there.

  • Caregivers who have a loved one living in their home often can’t get away for as long as required to drive to and attend regular support group meetings.

If you want to learn more about the Alzheimer’s Association Vermont Telephone Support Group or consider participating please contact Pamela Beidler: 802-316-3839 x8011 or pbeidler@alz.org.

Lisa B. Capp is a writer, activist and dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board for the Desert Southwest, is a member of the Alzheimer’s Impact Movement (AIM) and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profit organizations around the globe. Her passion now is focused on empowering dementia caregivers to survive their journey with grace.  
Join Lisa in a conversation about grace on Twitter @lisabcapp and LinkedIn at LisaBCapp.
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