The Purple Sherpa: A Support Network and Resource For Caregivers

November is National Alzheimer’s Disease Awareness Month and in an effort to fight this debilitating disease that affects an estimated 5.7 million Americans, Chaffin Luhana LLP team members, Raelyn LeMunyon, and Dan Reo interviewed Julie Fleming, the founder of The Purple Sherpa, a nonprofit that supports the caregivers for people with dementia and Alzheimer’s through their website and on Facebook.

Julie is an author, speaker, attorney, business consultant, and served as a caretaker for her father when he was diagnosed with Alzheimer’s disease and vascular dementia in 2011.

What is The Purple Sherpa?

The Purple Sherpa was founded on September 21st, which is World Alzheimer’s Day, of 2015.

Our mission is to educate, encourage, and support dementia family caregivers.

That includes caregivers who are actually providing hands-on care, as well as people whose loved ones are living in a memory care unit, or long-distance caregivers. So really anybody who is part of a care team for a loved one who’s living with dementia can utilize our group on Facebook called “The Purple Sherpa Basecamp“.

We also have a grief support group on Facebook, because caregivers experience grief as their loved one is fading away. And then, of course, there’s the grief after death, and then there’s this moment, “Wait, what is this life that I am in now? I don’t recognize it anymore. How do I put it together? How do I go from here?”

This year we will also be awarding grants to families to provide for care for services, such as errand and grocery delivery services, and for handyman services, so that people can live safely at home for longer.

What inspired you to create The Purple Sherpa?

There were two reasons I started it. The first was the isolation. I am the only child of two only children, and my father was my only remaining known family member. So it was terribly isolating.

My parents had me a little bit later than was usual at that time, so none of my friends were experiencing anything like this.

I’m very fortunate that my friends and my church stayed close. But it was support from people who didn’t understand intrinsically what I was going through, and so it was sort of a step removed support.

Reason number two is because my father was a lawyer, I’m a lawyer, and my mother was a doctor. So you would think that with those resources, we would have been able to do everything “right.” Yet, I discovered there were things that we didn’t do right.

I’ll give you an example. My father had given me power of attorney, and he had an advance directive. I thought that because he and I read the language of the advance directive, I had what I needed to make decisions for him if that time should come.

The time came. It was December 2014, and the question was whether he should have a pacemaker. He was having some significant cardiac issues, and his cardiologist who was a good friend of the family said, “Yes, he should get a pacemaker.”

I went back to the advanced directive and it really didn’t speak to that specific situation. I had to make that decision with no guidance.

One of the things that I tell people now is, “It’s hard”. I can’t imagine how hard it would have been for me to say to my dad, “If it looks like you’re about to die and a pacemaker is it, what would you want?” But you have to have those conversations.

I wanted to share the kinds of mistakes that I fell into, or the things that I didn’t find as early as I wish I had. I started making videos. I thought I would just put them out there and see if there was any interest.

Then we grew very quickly, which showed me that yes, there is interest and there is a need for another voice in this area. That’s how the Purple Sherpa became to be.

What impact has The Purple Sherpa had on caregivers?

There have been many times when somebody said, “This group has been a lifeline to me because I know that I’m not alone, and I can find somebody who is having an experience that’s kind of like mine. So I know that no matter what may be going on, I can come here and there will be somebody here to listen.”

There will always be somebody at The Purple Sherpa to respond and to give some insight, some suggestions, resources to check out.

So that even though people are going through this alone, they don’t have to do it truly by themselves.

What has been your favorite part of building this organization?

For me, it is when I talk with somebody one-on-one. I remember so clearly what it’s like to feel overwhelmed, and I wished somebody would tell me that it would all be okay.

When I talk with somebody, I share really fairly simple things, like to breathe. Just take a deep breath. There is a neurophysiological effect from a deep breath.

I help them with these little interventions that can interrupt the spin and can give them tools. One of the phrases that I often tell people is, “I learned not to mean anything until it means something.”

Because there are so many things that happen and you don’t know quite what they are. There are changes that could be relatively benign, or they could mean death within 48 hours.

Being able to share something like that helps the person remain rooted in the present, and remain present for the person they caring for, as well as for themselves.

If I could open a storefront and just sit there and talk with caregivers, I would love to do that.

Though Facebook is probably far better than that because I can talk to people all over the world.

What kinds of questions do caregivers often ask?

One of the first ones is, “What do I need to put in place?” People want to keep their loved ones at home, generally. So there are questions about what to put in place to make that possible.

Another question that often comes up is how to make this the best that it can possibly be. That’s a wonderful question because there’s a possibility in it.

There’s this perception that dementia equals becoming a shell or becoming a zombie. I think this is incredibly dehumanizing. People want to know how to confront the stigma that leads to that kind of inappropriate and incorrect perception

How can caregivers avoid burnout?

If you can take respite, do. It is so hard to do because of the guilt. We were incredibly fortunate with the support that we had, but the guilt that I felt driving away and leaving my dad with somebody was enormous.

There’s someone in our group whose family is not supportive. She’s caring for her dad. She finally went on a vacation and things did not go well. Her father ended up in the hospital and very nearly died.

She told us, “I feel horrible that this happened. I don’t know how I can ever get away again and trust my dad with anybody.” And yet you have to.

The other thing that I would suggest is to find the little things that you can work into any kind of day, to remind you that you have a life. It could be nail polish, music that makes you happy, anything that amuses you.

If you look at typical caregiver advice, it will talk about going away for a weekend, or going out to see a movie, or taking a bubble bath. These kinds of things that don’t feel realistic most of the time.

So you have to figure out how to fit in some of those bigger things, because those are important, but also how to fit smaller things in on a regular basis.

If you analogize a long-time caregiver to somebody who is treading water in the deep end of a pool and starting to drown, short moments of respite won’t let them recover enough to swim the way they might have before, but it will let them keep popping up above the surface of the water so they can get a deep breath and keep going.