Denise began working with family caregivers in 1990 and started her own business to help them in 1994. She sent out the first issue of her monthly print publication, Caregiving!, in January 1995. She discontinued the print publication in 2005 to concentrate solely on online content.
She regularly speaks about the family caregiver experience; you can view her list of seminar/workshop topics here. Her insights have been featured in The Wall Street Journal, SmartMoney.com, Time magazine and Chicago Tribune. Denise is also a professional caregiving coach, working with family caregivers and professionals to find the meaning in their journeys.
Denise Brown: Hi, this is Denise. Can I help you?
Carrie: Hi, Denise. This is Carrie. How are you?
Denise: I’m good. How are you?
Carrie: Very good. Is this still a good time for you to talk?
Denise: It is.
Carrie: All right, let’s jump right in then. We’re going to talk today about caregiving.com’s happiness problem, or project, excuse me. Let me start that over again. [laughter]
Denise: Carrie, can I ask you real quick, can you hear me OK? I’ve got my headset on with my cell phone. Does it sound OK?
Carrie: Yes, I can hear you well.
Denise: OK, great.
Carrie: Yeah, you’re very clear. Thanks. Today, we’re going to talk about caregiving.com’s happiness project and how it has helped caregivers cope. First, Denise, can I ask you to introduce yourself and describe briefly how caregiving.com came to be?
Denise: Sure. My name is Denise Brown. I launched caregiving.com in 1996. It was really a solution to what’s common in a care‑giving situation, which is isolation and loneliness. The purpose of the site is to connect family caregivers to give them a place where they can talk about what’s really going on, to provide them an opportunity to support others who are in a similar situation and to feel like there are solutions, like they can make it through, like there is hope for them.
Caregiving.com is really a community. What ties the community are care‑giving experiences.
Carrie: Wonderful. Specifically about the happiness project, what is it and why did you decide to start the project on caregiving.com?
Denise: The happiness project is basically a way to help family caregivers find moments of happiness during a time that feels so dark and unhappy. The inspiration was a book by Gretchen Rubin, where she talks about basically her own happiness project. In the book, she takes us through her journey to figure out how could she be happier? The reason she starts this journey is her husband has a diagnosis of a chronic illness that’s currently in remission, but she knows down the road that she’s going to have some help needs, that he’s going to need her help, her care. Well, she decides to figure out what makes her happy so that she has that when that will happen.
I thought, what happens after that point? Can you add more happiness during a time that’s so difficult? If you haven’t really thought about what makes you happy, can you take time out during a difficult time to figure that out?
We started the happiness project in July of 2010. Each month to those who are part of the project, I send out an email with an action word. Then I give them suggestions of how they can implement this action word in their day.
Then they commit to an action based on the word and then, hopefully, make improvements, month to month, that become part their life. What they change one month, they carry into the next month and then they get a new action word. What they change in the second month, they add to what they changed in the first month.
We’re really looking at changing the day so that what makes you happy is part of the day.
Carrie: Right. The action word is the same as the behavior. It’s the whole heart of the idea. What has been your favorite word or, maybe, participants who have gone along with you through this project, what has been one of the favorite action words? Can you describe the actions that came from it?
Denise: My favorite action word was “replace.” It was the second month into the project, second or third month into the project. I decided I was going to replace plastic bags with canvas bags. Anytime I went into a store, I was going to bring my own canvas bags with me. It was something I’d been meaning to do for 10 years, which I never did until replace was our action word.
Carrie: The word does not always have to relate in some way to care giving, then?
Denise: It does not. It can or it also could be something that they just decide they want to do in their life anyway. That’s what’s great about it. It’s completely flexible. They can look at, “This is something in care giving that isn’t working for me, so I’m going to replace it with something else.” Or they could just decide they’re going to replace a food choice with a better food choice. I give that child ideas to think about and then they determine what it is that they’re going to do.
When I replaced these plastic bags with canvas ones, you would think it wasn’t necessarily all that much happiness, just that. I was so happy when I go shopping that I do this. I’ve tweaked my habit so I have canvas bags in the back of my car or the truck. It just makes a difference for me.
Instead of holding on to that thought, oh my gosh, I’ve been meaning to use canvas bags for 10 years and I still I’m not using canvas bags, I thought, isn’t it great to do what I meant to do all these years?
Carrie: One thing I think is important to note, too, is that this is giving caregivers permission to say, “I’m not always happy.”
Denise: Oh, yes. Right, yes.
Carrie: Is that an important thing to be able to do?
Denise: Absolutely. The care giving is sometimes what holds them back from admitting that this is really an unhappy time, because they feel guilty. Thinking what will my “care‑ee,” the person who is receiving my care, my family member or friend, think about the fact that they have this chronic illness or disability and because I help them, I’m now unhappy? It’s a hard fact to admit. Yet, it’s just a fact of care giving.
There are so many things that happen in the experience that could really leave you feeling, “Oh, I just don’t want to have to keep feeling this.” The sacrifices that you make, you watch someone in continual decline. It’s a sad time. It’s a sad time, so it leads you to unhappiness. It’s just sometimes hard to admit that.
Carrie: It’s important to make a decision to be happy, I suppose. The plan was to run this project for a year, and yet, you’re on the second year of the project. Is that correct?
Denise: We’re on the third year.
Carrie: The third year.
Denise: We just started the third year in July of 2012.
Carrie: Right. Why did you decide to continue? Do you see this now as an indefinite part of the website?
Denise: I asked the participants what they thought as we were nearing the end of the first year, if they wanted to continue. They all said yes, absolutely, so we just kept going. It is now something that is just a part of the site. It’s free to join. I do ask anyone who wants to join to take a really quick survey. Basically, the quick survey is just a measurement of their happiness, how they view their happiness.
At the end of the project, whenever the project ends for the participant ‑‑ because it could end, there’s no assurance of the end ‑‑ I like them to take a survey at the end that says, “How did this project, being a part of this every month, impact your happiness? Did it make a difference to do something like this?” I added something like a little research component to it.
Carrie: Yeah, you’re able to gauge how it’s helping people. Really, caregiving.com is a resource for a broad community of caregivers, allowing them to find support and develop true and lasting friendships. How important is human connection for caregivers?
Denise: Oh, my, gosh. Oh, that’s so great that you’ve picked up on that. It’s really critical because you can find yourself in care giving spending time with someone who is unable to connect with you in that relationship any longer. They might have a cognitive impairment. They might have so many disabilities and such tremendous decline. It’s difficult for them to connect with that family caregiver, so it’s a very lonely and isolating experience.
Then, from the family caregiver’s perspective, there are often others who don’t understand what they’re doing. Family members, friends might not be there in a way that the family caregiver thought they would or wanted them to, so there’s a lot of loss in relationships in the care‑giving experience.
When they go to a website like caregiving.com, they can connect with others who understand, who don’t ask that question, “Why are you doing this?” Everyone in the community understands why someone is doing what they do. They understand care giving, so they don’t ask those questions.
They just support. They understand. They acknowledge. They say, “Oh, I’ve felt that way, too.” They share solutions. More importantly, I think what the community does, each individual, each member is just moving forward, just a little gentle nudge that says, “You’re empowered and you can keep going. We believe in you. We know you can do this.”
Carrie: Right. It is caregiving.com. Like you said, it is free to join. Correct?
Denise: It is free to join. When you join, you can join an online support group. You can start a blog. If you like, you can create a group for your own family members and friends. You can share a calendar, schedules, appointments, who’s doing what, when, you can keep your family and friends appraised through your own personal group. If you’re interested in more intense support, we do have membership programs. There’s a program called Chart Your Path. There are monthly programs where we really focus on what you do well, emotionally and physically?
Carrie: All right, Denise, thank you so much for your time today and your dedication to a resource that helps people make connections.
Denise: Thank you so much. This was great.