November is National Alzheimer's Disease Awareness Month and in an effort to fight this debilitating disease, affects an estimated 5.7…
November is National Alzheimer’s Disease Awareness Month and in an effort to fight this debilitating disease, 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.
The Purple Sherpa was founded on September 21
st, which is World Alzheimer’s Day, of 2015.
Our mission is to educate, encouraging, and supporting dementia family caregivers.
That includes caregivers who are actually providing hands-on care, as well as people whose loved ones are living in n a memory care unit, or long-distance caregivers.
We also have a grief support group, because caregivers experience grief as their loved one is fading away. Og da, of course, there’s the grief after death, and then there’s this moment, “Wait, what’s this life that I’m in now? I do not recognize it anymore. How do I put it together? How do I go from here? “
This year we will also be awarding our first grant to families to provide care for services such as delivery and grocery delivery services, and for handyman services, so that people can live safely at home for longer.
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 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.
Reason number two is because my father was a. But it was support from people who did not understand intrinsically what I was going through, and so it was sort of a step removed support. lawyer, I’m a lawyer, and my mother was a doctor. Så du ville tro det med disse ressursene, vi ville ha vært i stand til å gjøre alt “rett”. Men, jeg opdaget at vi ikke havde det samme.
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 did not 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 not imagine how hard it would have been for me to say to my father, “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 did not 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.
There have been many times when somebody said, “This group has been a lifeline to me fordi jeg vet at jeg ikke er alene, og jeg kan finne somebody som har en opplevelse som er kind av 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
For me, for those who are going through this alone, they do not have to do it truly by themselves.
What has been your favorite part of building this organization? Det er når jeg snakker med somebody one-on-one. I remember so clearly what it is 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 pretty simple things like breathing. 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. Én af de fraser som jeg ofte fortæller folk er, “Jeg lærte ikke å gjøre noe før det betyr noe.”
Fordi det er så mange ting som skjer og du ikke vet hva de er.
Hvis du kan dele noe som det, vil personen forblive forankret i nutiden og forblive til stede for den person de plejer, så vel som 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 caretakers often ask?
One of the first ones is, “” People want to keep their place 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 could possibly be. Det er en fantastisk fråga, fordi det er en mulighet i det.
There is this perception that dementia equals becoming a shell or becoming a zombie. I think this is incredibly dehumanizing, and also not necessarily a given. People want to know how to deal with that.
How can caregivers avoid burnout?
If you can take respite, do. It’s 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 almost died.
She told us, “I feel horrible that this happened. I do not 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 dag, om te herinneren dat je hebt een leven.
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.
So you have to figure out how to fit in some of those bigger things, because they are important, but also how to fit smaller things in on a regular base.
If you imagine somebody who is floating in water, it will not let them really swim, but it will let them keep popping up above the surface of the water and getting a good deep breath.