Visionary Award Nominee: Julie Fleming


Visionary Award Nominee: Julie Fleming

Nominated by: Renee Barnow

Tell us about the nominee's caregiving story.
After walking the road of being her father’s primary caregiver for more than 7 years and understanding what it takes, on World Alzheimer’s Day 2016, Julie Fleming launched The Purple Sherpa, a nonprofit organization that’s designed to educate, encourage, and support dementia family caregivers. Today there are 65,600 followers on Facebook, almost 4100 members in the online closed support group, and almost 450 members in the closed The Purple Sherpa Grief Support Group.

Julie described her care giving experience as “the most exhausting, frightening, and loving experience I’ve ever had.”

Although not officially diagnosed with Alzheimer’s disease until fall 2011, Julie’s attorney, PhD chemical engineer father first showed signs of dementia as early as 2008. The signs were so subtle that no one else noticed a problem. After the diagnosis some 3.5 years later Julie’s father could no longer find the right words to express himself, forgot facts central to his life (e.g., meeting and marrying Julie’s mother), lost the ability to use a cell phone or turn on a computer (he was one of the first lawyers to use a computer in the courtroom).

Julie was the first of her cohort to have a parent with cognitive issues and she felt terribly isolated. She had no one with whom she could relate, no one with whom she could bounce around ideas, no one who could offer road-tested advice as her father’s world started to shrink.

Unable to find the practical, hands-on, real-world advice she craved and during a fairly stable time of care giving she started her own place by first posting a blog on a Facebook page then called Alzheimer’s Caregiver Minute (now The Purple Sherpa Basecamp) to share some of the lessons she’d learned.

She wanted a place for sharing actionable advice on how both care-partners/caregivers and those who are living with dementia can live well in spite of dementia and for creating an online space for dementia family care-partners and caregivers to gather for support and for sharing advice and knowledge based on actual experience. What sets The Purple Sherpa apart from other organizations is that the group is “employee owned” as it were—caregivers for caregivers.

Over the years of developing and expanding The Purple Sherpa Julie realized that she was able to bring to bear her years as a practicing attorney, as a coach and consultant, and as a trainer for lawyers and law firms. And while she never would have predicted doing this kind of work, her past experiences have prepared her.

Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
As a place to share what people learned as caregivers for loved ones who have Alzheimer’s disease or another form of dementia the Purple Sherpa Basecamp also provides a place to vent and support one another, a place where one can feel free to break the silence that leaves so many caregivers feeling alone and isolated. The group is a warm, supportive, compassionate place where people connect with others with similar experiences and emotions 24/7 from anyplace in the world. (The online group reaches approximately 4100 members from Australia, Canada, Cyprus, Ireland, Kenya, New Zealand, Puerto Rico, Rwanda, The Netherlands, Trinidad & Tobago, UK, USA, and Western Cape - and probably more nations than that!) No need to make an appointment. No need to leave home. This always on availability makes care giving easier.

Also making life easier for caregivers whose loved one has passed on is a sister Facebook group—The Purple Sherpa Grief Support group. That group numbers almost 500. Members of the group gently wipe each others’ tears. They offer suggestions of how to simply be when the “job” of caregiver ends. Available when a member of the clergy or therapist might not be, the grief support group is.

Julie currently:
– provides resources via The Purple Sherpa’s Facebook page and website
– offers two free, closed Facebook support groups (The Purple Sherpa Basecamp for dementia family care-partners and caregivers, and The Purple Sherpa Grief Support Group, for those Master Sherpas looking to restart their own lives after the death of a loved one who was living with dementia)
– offers monthly live support groups via telephone and video conference
– offers weekly interactive Facebook live video casts, which allow care-partners/caregivers to ask questions and get feedback from her, the Founding Sherpa, and to build community as attendees discover that they are not alone

And there is more innovation: At the end of 2018 The Purple Sherpa started making grants for caregivers. Grants support such things as respite care, handyman services.

In development for 2019 is another related online forum that will expand and deepen the exchange for family caregivers and paid professionals.

How does the nominee inspire others?

With her deep, caring heart Julia responds to every post in both The Purple Sherpa Basecamp and The Purple Sherpa Grief Support Group with encouragement, answers, and suggestions when she doesn't have answers. She shares from her experience, her knowledge, her research on a vast array of topics germane to people caring for someone with Alzheimer’s/dementia including medical, legal, emotional, and spiritual.

She has administered the group single handedly except for volunteers you can count on one hand. The volunteers post wishes to members on their birthday (data collected when members join).

Julie invites members to share their triumphs and setbacks as each one of us is in the trenches, fighting the same battle; she encourages members to offer their answers to others’ questions. That's why she calls members Sherpas – we are the ones who are farther along on the path and can offer encouragement and experience to others who haven't got that far yet. Together all the members climb that mountain.

Julie is the Caregiver of us Caregivers

Please provide testimonials of family caregivers or former family caregivers who benefit from this support.

  • This group was my lifeline, my family. I’ve shared it with so many people...doctors, counselors, other caregivers ~ Carol Gore

  • I find comfort in knowing I’m not alone, and this type of forum helps so much. ~ Tiffani Moore

  • I think the biggest comfort we draw from this group - knowing we are not alone - that we can cry, curse, question and not be judged. Simply comforted, encouraged, and sometimes advised. ~Kate Mears

  • I find this a safe place to ask questions, get support and vent, rage or cry. There is a lifetime of wisdom within this group and if you have a question, I am sure you will get several suggestions. ~ Antoinette Bronson

  • The grief group is my go-to place before friends, clergy, when I want or need an immediate, compassionate virtual hug to help me grieve my Mom. ~ Renée Barnow

  • Basecamp has been a source of care when nobody else was here. In the middle of the night, someone was there. This journey is terrifying and dogged with its ongoing challenges. Having encouraging words and shared experiences has been crucial to my survival as a caregiver. ~ Blair Kari

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