Talking With Barry Katz: The Easy Way to Let People Help Out
Caregivers to an ailing or elderly loved one frequently get many offers of help from friends, coworkers, and other family members. Yet, paradoxically, caregivers are often both overwhelmed with tasks and notoriously bad at delegating them. This is partly because coordinating help is itself a part-time job -- one that caregivers simply don't have time for.
This is what happened to Barry Katz when his late wife, Carole Singer, a psychiatric nurse practitioner, began intensive chemotherapy for ovarian cancer. Katz was gratified that so many friends wanted to help but often was too busy coordinating his work, his kids' school commitments, and his wife's medical appointments even to respond. He also didn't like constantly asking for help.
So friends would drop off meals, not knowing what the family needed, or offer transportation and then sometimes forget that they did. One day, as he threw out a tray of turkey roll-ups that had gone bad, Katz had the idea for a website that could coordinate families' needs with friends' desires to help.
With his friend Hal Chapel, Katz created Lotsa Helping Hands . The free, easy-to-use site provides a private group calendar and other tools that allow caregivers, friends, and coworkers to coordinate meals, rides, and anything else that a family needs -- including some relief for the primary caregiver.
For those in long-term caregiving situations, an ongoing system of organized help and relief could almost literally be a lifesaver.
To begin, a coordinator (often the caregiver) creates a group calendar and lists on it the care recipient's specific needs. Then he adds the name and e-mail address of each person who wants to help, and those people sign up for various tasks. Shortly before their turn to volunteer, they each receive an e-mail reminder.
The site also includes a customizable community area where photos, well wishes, and updates on the care recipient's needs or condition can be shared. Lotsa Helping Hands has hosted more than 10,000 communities since it began four years ago -- tiny and huge, local and international.
The most interesting aspect of Lotsa Helping Hands is that it creates a cohesive community of people who may be scattered, or who may even be strangers to one another, yet they gather together around a common cause. Barry Katz spoke to Caring.com about caregiver needs, what his site offers, and what he wants all women to know about ovarian cancer.
How did your wife, Carole, discover that she had ovarian cancer?
She looked at me one day and said, "You know, I feel like I'm getting fat." I felt the spot and it was hard as a rock, so I insisted that she see her doctor that day. But she really had no symptoms at all, no pain -- which is the essence of ovarian cancer and one of the biggest problems about it. The campaigns to drive awareness now say, "It whispers, so listen."
She called me later that day and told me she had cancer and needed surgery immediately. With ovarian cancer, if you catch it early enough, which is hard to do, it's eminently treatable. There's a protein marker that all women have called CA-125, and the baseline is usually somewhere between zero and 30. When she was diagnosed, her CA-125 was 12,000, so it was a later stage.
Was Carole bedridden much of the time?
She continued to work. She loved helping other people. But essentially, for the four years that she battled the cancer, there was probably no more than a two-month period when she wasn't in some sort of treatment.
Carole was also a BRCA1 gene carrier. She didn't know it because that side of the family didn't communicate with each other. Had we had that knowledge, in all probability she'd be alive today. She was very bitter about that and became a strong fund-raiser and advocate for the National Ovarian Cancer Coalition, to raise awareness about knowing what your family history is and getting tested.
You were really plunged overnight into caregiving for four years. What do you wish you had known during that time?
I wish I had known that there was a way to coordinate the onslaught of help that barraged us. There was a minimum of ten calls every time I came home. You can only say things so many times, but people feel insulted if you don't respond. You have to return a lot of calls from people who want to help, multiple meals would show up on the doorstep, and there was really no way to coordinate it.
When I was in the midst of it, I didn't take as hard a look as I did after the fact. And then I found that there was really nothing out there that provided the coordination of what we call "circles of community" -- the people from work and your neighborhood and your church or synagogue who want to help and don't really know each other.
That was the nut of what I felt was really needed in the caregiving world. So the very first iterations of Lotsa Helping Hands revolved strictly around coordinating the instrumental activities of daily living -- meals, rides, childcare -- things like that. As we've evolved, we've incorporated communication aspects and the message boards and photo galleries -- the basic way to let people create a community.
The beauty of all that is that it's highly customizable, so that instead of it just saying, "messages," it could say, "Mary's updates" or "Mary's blog." It can be different for every community.
How big is the average community?
The average active community is about 30 people, but we also have some mega-communities -- one is now well over 600 people. We're just growing wildly as the word gets out.
It's often very stressful for people who are ill to keep providing updates on their health to everyone who wants one. But friends also feel hurt if they're not kept up on things.
That's true, and that's why, more than a year ago, we added in all of these "community-making" communications features. It's also a way for people who are physically far away to stay in touch.
We give people tips -- for instance, obviously someone who lives across the country is not going to be bringing a meal, but the coordinator might create a section for them called something like "ways for out-of-towners to help." And it could be noted in there that a caregiver or patient needs to drive 50 miles a day for treatments, so they could really use gas cards.
You can customize it any way that your imagination leads you. We have people who create recipe sections or special recipes. Say that the person being cared for has celiac disease. You can create a section called "celiac sites" that can send people to places where you can find special recipes or other information easily. It's not a static system; it's very dynamic in that way.
Are there special features for those taking care of elderly or ill parents?
The most common thing about the communities that form around an elderly person is that their members are usually more at a distance, so it keeps them feeling like they're directly in touch. That's probably the biggest piece of it. And keeping vital information about the person's medical and other issues in one place is also important.
We've found that our elder communities are generally smaller because older people don't have as many peers, so it's really often just the family. We have the ability to create a private discussion section, so if one of the children is in Minnesota and one's in New York and one's in Florida, and they're kind of managing their parents' care through this system, they can set up a private conversation that only they have access to, so that they can keep their own communication going.
Is the person who's receiving the care usually interested in being involved with this?
Primarily they are, for two reasons. First, depending on their inclination, they often create a message board so they can do updates. Maybe only that person can post there, but everyone else can comment. And when you sign in, it will tell you how many more entries there are since the last time you were there.
The second reason why the people receiving care often want to be a member of the community is that they can then get an e-mail every time somebody signs up for something. They're kept informed and know what the schedule is. They can get a printout of every day for the next month, with who's doing what.
Are the community coordinators usually the primary caregivers?
The coordinator is usually the caregiver, or that person in concert with a close friend. Caregivers need to be kept in the loop because they're the ones who really know what the needs are, so their feedback is pretty important.
Sometimes, if it's a large community, there will be segmentation -- a meals coordinator, a rides coordinator. Some people have also dovetailed our system with the Share the Care system, which is really a book-based organization that tells you things like how to set up teams.
How does Lotsa Helping Hands address people's different comfort levels with illness and age and the kind of help they want to provide?
There are some people who are in your face and call all the time and want to help, which is wonderful, and then there are other people who get scared by what's going on and withdraw and go away. When we sat down to design the system, we tried to take this into account. One of the beauties of Lotsa Helping Hands is that it addresses all of the different constituencies of people.
Having been in the position of having to ask for help on a consistent basis, I can tell you that it's very difficult to do. The system really allows for you to list various needs once, and then people can sign up to fill those needs for months. So the system kind of takes over, and you're not constantly asking for help.
Because it's a private community and people come on at their convenience -- it might be the middle of the night when someone signs on to see what they can do. There's something very special about that because nobody's on the phone with them or even subtly twisting their arms, making them feel guilty. And when the recipient sees that, she gets such a good feeling because she knows that person really wants to help.
It's a subtle thing, but it makes such a difference. And friends or family members feel like they're being informed and they get a chance to help. So they're happy and the recipient is happy -- and if you believe the literature that says the relief of stress helps healing, which I believe is absolutely true, then we're helping to relieve that stress.
Is this the most fulfilling employment you've ever had?
Oh, my god, yes. There isn't a day goes by that I don't get an e-mail from somebody who says that this has helped so much. Carole would have been extremely satisfied with the work we've done.