Gary Barg has dedicated his life to helping caregivers across the country. He is the founder and editor-in-chief of Today's Caregiver magazine and the author of "The Fearless Caregiver." He organizes and hosts the Fearless Caregiver conferences, which have featured celebrities like Clay Aiken, Leeza Gibbons, Montel Williams, and Dana Reeve. He spoke to Beliefnet about living a balanced life, the role of spirituality in caregiving, and what it truly means to be 'fearless.'
Why did you start "Today's Caregiver?"
I got into it the hard way, actually. I was a long distance caregiver for my grandparents, helping my mom who was three states away. And I bet I was coming home once every six weeks just to see how things were, try to help out. But the truth is, you really can't tell what's going on unless you're right in the middle of it.
And so, I went home for two weeks to help her out and see what I could do. The first minute I got there, we were dealing with issue after issue. My grandfather's condition was changing, and so his care setting had to change. My mom was having problems with the insurance company wasn't feeling so good. It was just two weeks of this pain and fear and uncertainty.
I remember sitting with her the last night before I was going to go back to Atlanta and I said I was so glad that I was with her that particular two weeks because of all we went through. She looked at me dumbfounded because, because what for me was intensity I had never felt before, to her was normal.
It occurred to me there had to be a better way.How would you characterize the average caregiver?
Well, average is a hard word to use for caregivers.
Generally speaking, it is pretty traditional. It's an adult who's caring for their parent, either living down the street or across the country. It is somebody who has really taken on the personal responsibility of making sure that a loved one is cared for as best as possible, shepherded through the healthcare system and making sure that, everything they do has to do with better care for their loved one.
You know, A statistic came out a few years ago from Stanford that said that, when somebody has a loved one living with cognitive impairment, 30 percent of them will die before their loved ones do.
How can we prevent that from happening?
Part of what we try to do is really educate the caregiver, make sure that the caregiver sees that they're really a member of their loved ones' professional care team--there's the doctor and the therapist and the nurse practitioner and the nutritionist. The way to actually help ourselves as we help our loved ones is to realize that we need to learn everything we can about our loved ones' care, about their situation, about the medical procedures and other members of their team. And we need to realize that we have a tremendous amount of responsibility and should get a lot of respect from the other members of the care team.
A side benefit of that is, as we get involved, as we see that we have certain powers, as we become, you know, what I like to call the fearless caregiver, we get more involved and we go to support groups and we go to conferences and we stay up on things. And we get motivated and literally take ourselves, a lot of times, out of the depression spiral that ends up killing us.
I'm sure you've heard of the phenomenon known as "caregiver stress," the caregiver being so focused on the person they're caring for that they forget about themselves. What are some tips that you would give to a caregiver who feels overwhelmed and doesn't know how to take care of themselves?
Job one for any caregiver is to make sure that they're cared for first. You know, it's the old story, I know you've heard it, about being in an airplane when the oxygen mask comes down. You have to put yours on first before you can help the other person.
The first thing you have to do is really look around your community and see who's out there looking to support you. There's all sorts of organizations, there's support groups, even if you're in a more rural area, there are a lot of telephone or web support [groups].
Stopping to make sure that you eat well is not selfish. It's not taking your eye off the ball. The core principle of caring for your loved one, of being a successful caregiver, is making sure that you stay healthy so you can care for your loved one as best as humanly possible.
There are times when a sick or injured person who's being taken care of resents that there's a person who has to come in and help them with things they used to be able to do for themselves. How can you, in that situation, care for the person and still let them feel empowered?
One of the biggest challenges you get is where somebody who basically has been handling a lot of the decision-making for a family now is not able to do any of it.
I think if at all possible, and obviously we're not talking about end-stage Alzheimer's or a situation where cognitive function is not a part of the picture, you need honest, open communication.
And if you can't actually do that without getting support, get support. Stay focused and stay aware and you realize that, as painful as it is for you, it is painful for your loved one as well.