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November is National Alzheimer Awareness Month and aims to fight this debilitating disease that affects about 5.7 million AmericansRaelyn LeMunyon, a member of Chaffin Luhana LLP, and Dan Reo interviewed Julie Fleming, founder of The Purple Sherpa, a non-profit organization that supports caregivers of people with dementia and Alzheimer's through their website and on Facebook .
Julie is an author, speaker, lawyer, corporate consultant, and has left her father in care 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 21, World Alzheimer's Day, 2015.
Our mission is to educate, encourage and support family caregivers with dementia.
This includes caregivers who provide practical care, as well as people whose relatives live in a memory care unit, or long-distance caregivers. So, really, anyone who is part of a care team for a loved one with dementia.
We also have a bereavement support group because caregivers feel mourning when their loved one wipes out. And then, of course, there is sorrow after death, and then there is this moment: "Wait, what is this life in which I am now? I do not recognize him anymore. How can I put it together? How am I going from here?
This year, we will also be awarding our first grant to families to help them with services such as grocery and grocery delivery services, as well as handyman services so people can live longer. safely at home.
What inspired you to create The Purple Sherpa?
There are two reasons why I started. The first was isolation. I am the only child of two unique children and my father was the last member of my family known. So, it was terribly insulating.
My parents had a little later than usual at that time, so none of my friends had experienced such a situation.
I am very lucky that my friends and my church have stayed close. But it was the support of people who did not intrinsically understand what I was going through and so it was a kind of withdrawn support.
The reason number two is because my father was a lawyer, I am a lawyer and my mother was a doctor. So we could think that with these resources, we could have done everything "well". Yet, I discovered that there were things we did not do well.
I'm going to give you an example. My father had given me a power of attorney and he had a prior directive. I thought that, as he and I had read the wording of the advance directive, I had everything I needed to make decisions for him if the time was right.
The time has come. It was in December 2014 and the question was whether he should have a pacemaker. He had severe heart problems and his cardiologist, who was a good friend of the family, said, "Yes, he should have a pacemaker."
I went back to the advance directive and she did not really talk about that particular situation. I had to make this decision without guidance.
One of the things I say to people is, "It's difficult." I can not imagine how hard it would have been for me to say to my father, "If you look like you're about to die and the pacemaker is, what do you want?" But you have to have these conversations.
I wanted to share the kinds of mistakes I fell into, or things I did not find as early as I would have liked. I started making videos. I thought I would simply put them on the spot to see if there was interest.
Then we grew up very quickly, which showed me that yes, there was an interest and that we needed another voice in this area. This is how the Purple Sherpa has become.
What has been the impact of Purple Sherpa on caregivers?
Sometimes, someone said, "This group has been vital to me because I know that I am not alone and that I can find someone who lives an experience similar to mine. So I know that no matter what happens, I can come here and there will be someone to listen to. "
At Purple Sherpa, there will always be someone to answer and give insights, suggestions, resources to check.
Thus, even if people live alone this situation, they are not obliged to do it themselves.
What was your favorite part in building this organization?
For me, it's when I talk with someone one-on-one. I remember very well how it feels to be overwhelmed and I wish everyone would tell me that everything would be fine.
When I speak with someone, I share very simple things, like breathing. Just take a deep breath. There is a neurophysiological effect of deep breathing.
I help them with these small interventions that can interrupt the rotation and give them tools. One of the phrases I often say to people is: "I learned to do nothing until it made sense."
Because a lot of things are happening and you do not really know what they are. Some changes may be relatively benign or cause death within 48 hours.
Being able to share something like this helps the person stay rooted in the present and stay present for the person they are caring for, as well as for themselves.
If I could open a storefront and just sit there and talk to caregivers, I'd love to do it.
Although Facebook is probably much better than that because I can talk to people all over the world.
What types of questions do guardians often ask?
One of the first is:What should I put in place?"People want to keep their loved ones at home, in general. So there are questions about what needs to be put in place to make this possible.
Another question that comes up often is how to get the best out of it. This is a great question because there is a possibility.
There is this perception that dementia is like becoming a shell or becoming a zombie. I think it's incredibly dehumanizing, and not necessarily acquired. People want to know how to handle this.
How can caregivers avoid burnout?
If you can take a break, do it. It's so hard to do because of guilt. We had an incredible chance to benefit from the support we had, but the guilt I felt leaving and leaving my father with someone was enormous.
There is someone in our group whose family is not supportive. She looks after her father. She finally went on vacation and things did not go well. His father was found at the hospital and nearly died.
She told us, "I feel horrible that it happened. I do not know how I could escape and trust my father with anyone. And yet, you must do it.
The other thing I would suggest is to find the little things you can work in any day, to remind you that you have a life. It could be nail polish, music that makes you happy, everything that amuses you.
If you follow the usual advice of caregivers, you can talk about leaving for a weekend, going to see a movie or taking a bubble bath. These kinds of things do not seem realistic most of the time.
So you have to figure out how to integrate some of these big things, because they are important, but also how to integrate smaller things on a regular basis.
If you imagine a person floating in the water, she will not let her really swim, but she will let her continue to appear above the surface of the water and breathe deeply.
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