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.
Some people feel that, if you have money, that instantly gives you many more options for caregiving, whether that's being able to afford to not work or to hire a person or anything else. Do you see this problem?
I've done probably 75 interviews with major corporate heads and celebrities--people who seem like they should never be a problem with money. And they have the same fears and challenges and panic and pain that any caregiver does.
Obviously, it may be silly for me to say that money doesn't solve some part of it. I think that the great equalizer is not isolating yourself, and not sitting there thinking that nobody's going through what you're going through, and that there's no support and that nobody can help you.
Because, I think as you look around, there's a lot of opportunity for caregivers, at any financial juncture in their lives, to get support. There's monies available through the government. A lot of the area Agency on Aging organizations have some solutions. The Alzheimer's Association has some solutions.
Also, you can do what we call a reverse gift list. You sit down and think of 10 people who would do any manageable, bite-sized, easy thing to help that you would do for them and they'd do for you.
For example, when a neighbor goes to the store, maybe they'll stop by, pick up your grocery list and some money and go out and get groceries for you while they're getting their own. Maybe you have someone at work that you really like. Maybe they'll come by once a month and have dinner and talk about anything but caregiving.
If you come up with 10 people who would do those easy, manageable things that you'd do for them and they'd do for you, and you ask them for this support, 9 out of 10 times they're simply going to say yes because they're looking to find something to help you.
We need to create ourselves almost as a corporation: Caring For Mama, Inc. And in that corporation you have to look at your resources, and you have to look at people who can offer you services. And you have to look at what kind of support you can get that's available in your community and take advantage of every single bit of it. And that's when you're a fearless caregiver.
One thing that can come up is, if you get stressed or you're busy or you have a lot going on while you're a caregiver, often the person you're taking care of notices that. How do you show them that caregiving's not a burden?
It's that honest and open communication. Whatever you think you're hiding from your loved one, you're not and you're just making it worse. And even if you're dealing with a situation where there is cognitive impairment, the last thing that somebody ever loses recognition of is love.
One of the biggest, I think, challenges with caregiving is we want to make sure that everybody is happy. And sometimes you need to do certain things that's better for your loved one, and you have to get our or you need to get help or you need to have somebody come in in your place. Sometimes you just have to explain it and then make it happen.
We ran a piece called The Reluctant Caregiver that deals with a person caring for a relative they have been estranged from. How do you cope with caring for a person who has been out of your life for a long period of time or who you still have anger with?
It happens so much. One of the challenges is to face yourself and see what you're capable of, what you think that you're able to handle and you're able to do, because now you're dealing in as frank and honest a relationship as you can be with somebody when you're their caregiver.
If you're stuck, and you're there, and it must be you, you cannot isolate yourself. You cannot fume. You cannot sit there and let it kill you.
You have to find a support group, stay involved, stay communicating. And again, if you can't communicate with your loved one, make sure that you're involved in the communicating with other caregivers who can help you through it.
You spoke earlier about words that you don't think should be associated with care-giving, like fear or frustration. Today's Caregiver did a study about words that caregivers don't like and number one was "caregiver". Why do you think that is, and what other words could you use?
According to the National Family of Caregivers Association, the challenge of care-giving or supporting caregivers is that self-identification is the biggest barrier. If you go in a community and you say, "we're here to support caregivers" they say, "I'm not a caregiver. I resent that. I am a daughter or I am a son or I'm a parent. I'm doing what I'm doing out of love. I don't need a new title."
Although I've had caregiver.com and created Today's Caregiver magazine 13 years ago, I'm not so crazy about the word, either. People might think you're talking about professional caregivers, and think you might be talking about family caregivers.
I don't really put as much stock on the word except as a way to identify the context of what we're talking about. Until a better one pops up, the word is caregiver.
One unfortunate reality is that often whoever you're caring for ultimately might pass away. How can caregivers cope when that happens?
There are steps to grieve past the passing of a loved one after you've cared for them. Until you actually go through those steps, that [death] will be something that will always haunt you.
I firmly believe that bereavement groups are important. Aftercare is a huge issue. I don't want anybody to be forced to walk away from their feelings now that someone who was such a big part of your life for so many years is gone. People need the glide path. They need to stay among people who are caregiving. It's very, very important to make sure that that part of their life just didn't end abruptly.
What role do spirituality and faith play in caregiving?
In my experience, people have either renewed their faith, recommitted to their faith, or have a greater belief in the connectiveness of themselves with the world and with their own higher powers.
And you might think that counterintuitive, because all these terrible things are happening that you might think, "Oh, there is no God. There no greater being. There is no bigger reason."
I would hesitate to guess that there's hardly any caregiver out there who hasn't become stronger to their faith due to what they're going through as a family caregiver.
I think that's where a caregiver's strength is. I think that's where the greatest, honest--most honest connection between you and your higher powers are is when you're needed the most. And that the great things that'll happen are greater. You need your spirituality more than any other time in your life. And generally speaking, it's there for you.