Chicago native Denise M. Brown founded CareGiving.com at a time when Google, Twitter, Facebook and Wikipedia didn’t even exist.  Everyone told Denise she was wasting her time.  No one would be interested in a website like CareGiving.com.  She launched the site anyway and now, over twenty years later, CareGiving.com is the go-to destination for millions of family caregivers desperate for practical advice and encouragement.  Jana talks with Denise about her early influences, how she manages her own parents and the two-day, National Institutes of Health event that shocked Denise into the realization that caregivers are invisible even the medical community.  Note: this episode originally aired November 2, 2017.  It has been lightly edited.

Blog post mentioned in the show (Denise M. Brown): “What They Need Isn’t What I Need”
Explore the CareGiving.com website
Attend CareGiving.com’s Fourth Annual Caregiving Conference (Nov. 7-10, 2019)
Denise contact info: 773-343-6341 | denise@caregiving.com

Subscribe to The Agewyz Podcast:  iTunes
Got a story to share? Email us any time at jana@agewyz.com

INTERVIEW TRANSCRIPT:

SHOW INTRO/CLIP:   DENISE – I was at a benefits fair, and there was a vendor sitting next to me who, for whatever reason, starting talking about caring for his mom. And he was standing up — I was sitting down, I remember looking up at him — and he was emphatic in his declaration.  And he declared “caring for your parents will kill you faster than anything.” I thought, OH MY GOSH.

JANA – Hey everyone, this is Jana Panarites and you’re listening to The Agewyz Podcast.  You wouldn’t know it from the lack of media coverage on the subject, but here in America we’re in the midst of a caregiving epidemic.  Stay tuned for more with today’s guest, CareGiving.com founder Denise M. Brown.

JANA – Long before the topic of family caregiving began cropping up in the news, today’s guest recognized the needs of this hidden workforce which now makes up over 43 million Americans. Denise Brown began working with family caregivers as far back as 1990.  In 1996, she stepped into the brave new world of the Internet, known then as the World Wide Web, and launched her website CareGiving.com, which offers support to caregivers in the form of practical advice and encouragement. Denise has authored eight books, produced dozens of seminars, workshops and spoken widely on the topic of caregiving.  It’s easy to see why the digital publication Next Avenue named Denise one of its Top 50 Influencers in Aging for 2017. In today’s episode, we’re going to talk with this pioneering caregiver advocate about what’s changed in the healthcare landscape since she started her work over 20 years ago, what caregiving strategies she employs in her own life, and much, much more.  Professional caregiving coach and longtime advocate Denise M. Brown, I’m so pleased to have you on The Agewyz  Podcast. Welcome.

DENISE – Thank you so much for having me. I’m grateful for this opportunity to connect and share with you.

JANA – Great. So before we talk about the state of caregiving now, let’s step back in time to when you first started this work.  If you could share for our listeners what propelled you in this direction, and the work that you were doing that inspired you to start this business.

DENISE – So I’m a writer. And when I graduated from college in 1985, I worked for trade magazines, and I wrote what no one read and it drove me nuts. And so I thought, there’s got to be something else out there for me. So I actually had a career change when I was 27. And I was living out east at the time, I was going to do some freelance writing, and I thought, well, I need a part-time job just to have some cash flow. And I fell into this job managing a congregate meal site, in this little town in New Jersey.  And at this meal site, seniors from the little town would come and have a hot lunch.

DENISE – And we would also deliver meals on wheels. And that was my first introduction to family caregivers, because the daughters of the seniors who came for lunch would call me and say, how was my mom today? What did you think? And then I did that for the summer and I got promoted to the office. And the agency that I worked for had the contract to manage the grant for the county we lived in for the statewide respite care program in the state of New Jersey. So the state of New Jersey was very forward thinking and launched this program to give family caregivers a break in the mid 1980s. And they used revenue from the casinos to help fund the program.

JANA – How interesting.

DENISE – Yeah, isn’t that great? It was really such a great program. So I managed this program, which meant that I interacted with family caregivers all the time.  So I would go to their home, I would tell them about the program, we would put together their respite plan. And I just loved it. And I loved going into their homes. I felt like the nicest people in the world were family caregivers. And so I couldn’t get enough of their story. So from the perspective of a writer, it always seemed like, there are these great caregiving stories out there, right?  There’s drama, there’s intrigue, there’s comedy, you know, there’s fiction and nonfiction.

JANA – It’s drama every day.

DENISE – Yeah!  I couldn’t get enough of it. So I just continued to work with family caregivers. And then I thought, you know, there’s not that much help for them. What if I started a newsletter that was like an at-home support group for family caregivers, and that was the first product I launched, which was a print publication called Caregiving. And the first issue came out in January 1995.  And then later that year was when I started working on my website, and I first launched it through Prodigy, if you remember Prodigy–

JANA – I do.

DENISE – That connected you to the Internet, that was one of the software that was bundled into computers that we bought, which were huge back then. And at the time, Prodigy offered you the opportunity to have a personal page. So I used that as a way to step into the internet and see if there was an audience out there. And everybody told me there wasn’t. Everybody said, you know, you’re wasting your time. People don’t go online to look for what you’re going to offer. I thought, well, I don’t really think that. I think there is. And through Prodigy with my personal page, I tested the waters, discovered that there really was an audience out there. And then in August of 1996, I got the domain name CareGiving.com, and then launched it officially a few weeks later.

JANA – That’s just amazing. I mean, there are people listening to this who can’t even imagine a world without the Internet, but you and I lived through it.

DENISE – Oh yes, yes. And you know what, what’s interesting? When I decided to launch my newsletter, I went to the library. I got out books that had a list of all the newspaper editors and their email addresses and their — actually you know, what?  It was their physical address, now that I think, so I got the physical address of all the newspapers and editors, and I mailed them all press releases about my newsletter, and they picked it up, they put it into papers, and that’s how people started subscribing to the newsletter because they read it in the paper.

JANA – Wow, that’s great. Well, right. We’re talking about a time when there was no Google, no Twitter, Facebook or even a Wikipedia. So…

DENISE – None. Yeah.  The fax machine was innovative.

JANA – Totally. So what was your sense of how many people this issue was affecting? I mean, there were really no statistics on family caregivers back then, right? What were you hearing? I mean, how big was this did you think?

DENISE – That’s a great question. So I — you know, I don’t remember how we talked about the numbers of family caregivers. And I was lucky enough to have this wonderful mentor, her name was Mertha Loverde (sp?).  And she had started an organization, the very first one for family caregivers called Children of Aging Parents. And she launched that organization in the mid 1980s. And it just so happened that I lived by her out east, and we connected and she really helped me think about caregiving in a broader sense. And she was a huge encourager.  She knew that this was a big need. And she encouraged anyone who was interested in it, to really go out there and make a difference. And it was really her nudging me, that kept me going. So I didn’t necessarily see the numbers back then, although we knew that the numbers were going to grow because of our aging demographic. We could see it back then. So because of I had interacted with family caregivers on a regular basis already, it seemed to me that family caregivers were everywhere, and that they all needed support.

JANA – Back in mid-August [of 2016], you wrote a really interesting piece called, “What They Need Isn’t What I Need,” one of your many blog posts, and you wrote this while attending a Science of Caregiving series of workshops, from what it looks like. Why don’t you tell us about the two-day event? And what came out of that for you, in terms of what people don’t know about caregivers?

DENISE – Okay. I’m gonna try to be politically correct.

JANA – Yeah, that’s okay. You don’t have to be on this show, but — this is not a politically correct show, but go at it in your way.

DENISE – So research is kind of a hot button topic for me. So there was a two-day event at the National Institutes of Health, and it was called The Science of Caregiving. And I went, I can’t remember what it was but I thought, oh, gosh, I’ve got to be there. And it was researchers who got together who discussed the research findings around caregiving. And it was a frustrating couple of days. And it was frustrating for one reason, which was what started my blog post, which is, they talked about the patient.  Now we use the term caree, for patient, but a lot of their focus was the patient. I guess it was the idea that if the patient is helped, so is the family caregiver. But we’re two different people, we have two different needs, and what helps the patient maybe tumbles down and, you know, helps me, but what my parents need and what I need is completely different. And it was frustrating that the researchers couldn’t distinguish the patient, or the caree, from the family caregiver, that everybody was lumped together. And I found that fascinating in a way that was… not good.

JANA – But why was that, do you think?  Are we that invisible?

DENISE – I don’t get that. I don’t get that. I still am flabbergasted by that. And I will tell you that it’s frustrating because there are products and services that are launched on a regular basis where they tell us it’s for us, the family caregiver, and it’s not.  It’s for the caree.

JANA – Right. It’s really not.

DENISE – Yeah, it’s for the caree. And I don’t know why the market puts us together. And I think it’s because the market doesn’t understand the family caregiver experience. And it’s because they look too much at the caree and what the caree goes through, that they don’t think about, well, what does the family caregiver go through? They haven’t been able to make that jump. And it was fascinating to think that the researchers didn’t get that either. And there were a couple of times where researchers really got the two mixed up. They would talk about the family caregiver, when really they were talking about the patient. It was interesting to be there. The other thing that happened too is, on the second day, there was a panel of researchers and at the end of their formal presentation, we were able to get up and ask questions. And someone asked a question, and I can’t remember exactly what the question is but I remember what one of the researchers answered. He said, Well, family caregivers aren’t isolated. And honest to goodness, there was an audible gasp.

JANA – Whoa.

DENISE – I’m thinking, what???  How dare you say something that’s so untrue. That’s the irony of the experience. We’re completely isolated while we’re surrounded by people that can help us, but yet we’re completely isolated. And that’s how it is in the healthcare system. Oh, boy.

JANA – So you wrote in this piece that your parents’ struggle differs from your struggle. You’re sharing an experience, but we’re not sharing the same impact. Could you elaborate on that?  I’d like to have you share with the folks listening to this a little bit about your care situation. Your parents are still living, correct? And they’re nearby.

DENISE – Yeah, they live about 10 minutes from me, they are independent right now. We had a terrible 2015. But my mom is determined. So they are still both living independently and they are doing okay right now. So I count my blessings. However, what’s important to them is independence at all cost. That’s what’s important to them. And what’s important to me is their safety.  And they don’t care about that. They don’t care about their safety, they care about their independence.

JANA – How old are they?

DENISE – So my dad is 86 and my mom is 83.  So I had to let go of the idea that what was safe for them was most important. So in 2015, they had all these really terrible medical problems. And it was impossible for them to manage at home. So we moved them to a retirement community. My dad was all on board, he really wanted to go, my mom did not. And we convinced her to go for a short-term winter stay.  You know, let’s get through the winter so you don’t have to worry about ice and snow – we live in Chicago –  and then we’ll reevaluate.  And of course, we started reevaluating, once the holidays were over because she said, “I hate living in this dump.”  It wasn’t a dump.  And “I am not going to die here.”

JANA – [laughs]  I’m just laughing because this is so familiar.

DENISE – Right? We had a family meeting, and we were all sitting around in their living room in the retirement community and my mom stood up and announced that: “I am not dying in this dump.”  So there we go.  And it made me so upset. Because to me a move to a condo, an apartment, meant that my dad’s health would be sacrificed. My dad thrived in the retirement community. He did great. And it really was upsetting to me that my mom was only thinking of herself and really could not get past her own fear. And it’s my mom’s fear of death. You know, at the retirement community, she felt like she was dining with death.  It was too much for her.  It was too much for her. So I was very upset with my parents about this.

DENISE -Because here I thought, living in the retirement community guaranteed them, kind of like a gentler death, right? So no one’s going to be laying on the floor waiting for the ambulance, because they’re CNAs in the community that can get to their apartment in a matter of minutes and help them. And I just couldn’t understand why they didn’t want that. Why not have this gentle death? Why not have an easier life at the end of life? And finally when I got, well they value something that’s completely different than what I value, and I have to let go of what I value and really just respect what they value, our relationship changed for the better. And what was interesting is when I let go, I found more time for my life.  So letting go allowed them to live. And interestingly enough, it allowed me to live too.

JANA – And how many siblings do you have?

DENISE – So I have four siblings. We all live in the Chicagoland area.  My oldest sibling will not have anything to do with the family. We had a… let’s see… a difference of opinion about a medical decision? And my sister wanted to do one thing, the rest of us were like, That’s not right. And it turned out that she was wrong. And so she never forgave us for being wrong. And so she won’t have anything to do with us or my parents. And she lives closer to my parents than I do. She lives five minutes away.

JANA – Oh, my goodness.

DENISE – So she won’t – yeah, so we don’t see her at holidays. She doesn’t participate in anything that’s going on with their health. It’s kind of a sad situation, but it is – it is what it is.

JANA – Do the other sibs help out?

DENISE – Yeah.  And my other three siblings are awesome. So I have two brothers and a younger sister who helps. And they help me by being completely supportive of me. So my parents are a challenge. And my mom is a force of nature, which is great if the force is with you.  If you live a life that she thinks is crazy, like I do – you know, I’m not married, I don’t have kids, that just drives her nuts – then the force is on you.  And my siblings see that and they support me. And every once in a while one of my brothers would say, Oh, my gosh, I can’t believe what they just said to you. And I’ll say, I know, I know. Just the fact that he sees that and then says something to me about it, it makes all the difference. It makes all the difference. And so I will tell my parents, thank you so much for these siblings. I’m so grateful that I have them.  ‘Cause they are truly awesome.

JANA – It’s good that you get along with them. That doesn’t always happen, as we know in families – except for the outlier, the one that won’t see you anymore.  So what other strategies do you employ in terms of coping or time saving in your caregiving duties? How often do you see your parents?

DENISE – So I see my parents, well – so this is conference time for me so my schedule is a little goofy, but I see them a couple times a week. And it’s either just to socialize or for medical reasons, like to go to doctor’s appointments. So I’ll just tell you that I am not necessarily someone, like, that likes to sit and chat. So socializing is tough for me, because I’d much rather be doing something. I think it’s better to be productive. So I do much better with my parents when we are productive, like going to a doctor’s appointment, or taking care of some kind of medical issue. That is good for me. And then my younger sister is a chit chatter. She has the gift of gab, which is awesome. So she provides more of that socialization for my parents. So you know, like, we have a nice balance in terms of what we do for my parents and how we interact with them. So that helps me cope. Because I know that there’s someone in the family that’s great at socializing with them. And then I use it for my own advantage.

DENISE – So for instance, during hospitalizations, I go in there and do. Do, do, do,  right? But then when my sister comes, she’ll sit and talk. It used to get me so aggravated, because I would be like, why is she just sitting there talking?  There’s so much to do!  Until I realized that that was such a critical piece of my parents’ well-being, to have my sister come in and just relaxed chat with them, you know, bring them back into a world where there aren’t IVs and doctors.  And then once I got that, I thought, well, there’s an opportunity for me here too. So I make sure when there’s a hospitalization and my sister’s there, that we take time together and just go and gossip somewhere. So that’s a way for me to cope. So she provides a break for me, and she provides that really invaluable socialization for my parents.

JANA – Uh huh. When you were talking earlier about your mom standing up and saying, “I refuse to die here, I don’t want to live in this dump.” I can just imagine the reaction, because so often we have plans laid out for our parents, and all of a sudden they announce that they’re living in a totally different universe. I had this experience with my mother, too, after my father died, and she moved into an assisted living facility in Georgetown. I’m from Washington, DC. And she said, Gosh, I never thought I would end up in a place like this. And it was a great retirement home.

DENISE – Yeah.

JANA – And I just felt so awful. And prior to that she had moved in with my aunt, her sister, a divorcee who’d led a totally different life.  That lasted six months.  It was a disaster. But my cousin and I had worked out this plan where they were going to live together. And my mom, every time I called her, she would say, “Yeah, no, I’m not going to be living here for much longer.” So I think this notion that we think we can control our parents is just really dangerous.

DENISE – Absolutely.

JANA – I mean, there are safety issues where we want to control their safety, for sure. But holding that tension between what they want, and what we want for them is really difficult.

DENISE – Yeah. And it was, it was a disaster for my relationship with them. During that period of time when I was really holding on to, they have to stay at the retirement community. They have to stay here. My mom at this time was still recovering from a lengthy hospitalization. And so she was falling. And so one of the things that we said to her was, it’s dangerous for you to live anywhere else because of the falls. Well, she was very determined. So they ended up moving out of the retirement community and into an apartment. And it says a lot that that apartment is across the street from the retirement community.

JANA – You’re kidding.

DENISE – They’re like, across the street from the retirement community!

JANA – Oh, my God, that’s hilarious.

DENISE – So the first week they lived there, my mom fell, and my dad couldn’t get her up. And so they called me and I went, and I got her up. And my mom told this story just a few months ago. And she told it to my cousin, and she said, you know, I fell. I fell soon after we moved in here, and we were worried about calling Denise because we thought she’d be so mad. But she came over and she wasn’t mad. She just helped us, you know, get all straightened out. Everything was fine. But here’s what’s interesting. My mom said, “After that, I thought I cannot fall anymore.” So she has an exercise bike, and she writes it 30 minutes, six times a week, because she is not going to fall.  She is not going to fall again.

JANA – Yeah, that’s interesting. How things changed, too, once you back off, and you kind of just let them be, who they’re gonna be.

DENISE – Yeah, and they have to live the way they want to live until they die.  And it’s their life and it’s their choices.  You know, I can’t live their life for them. And that’s really what I was doing by deciding where’s the best place for them to live is.

JANA – That sounds like a line from [the movie] “Guess Who’s Coming to Dinner.” Katherine Hepburn says, “well, you can raise them, but you can’t live their lives for them.” And she was saying that about her kids. But now we’re saying that about our parents.  Have you talked about dying with your parents?  Their end of life? Have you had any conversations like that?

DENISE – Yes. Yeah. So I get so far and then they’re like, Oh, do we really have to talk about this? So before my dad’s major operation, my dad had his bladder, his kidney, his ureter and his prostate removed in March of 2015. Before my dad’s operation, he gave me his obituary. And on a regular basis, I use doctors appointments as a way to talk about: what do you want? So for instance, my dad had a doctor’s appointment this summer, he had a hospitalization this summer, he was drinking too much water, if you can believe that. And it caused his body to really get out of balance, because he only has one kidney. So then he was retaining fluid. He had a liter of fluid in his lungs. So at the follow-up appointment with the doctor, the doctor said, Okay, are you okay with following, you know, this restrictive fluid intake? My dad’s like, yep, I can do it. And then the doctor said, okay, we just want to make sure we keep your kidney in good shape, because if we don’t, then it’s dialysis or death.

DENISE – And so on the car ride home, I said to my dad, would you want dialysis? He says, No, I don’t think so. So I always try to figure out, how can I follow up with whatever the doctor said, so that we have a conversation about it. Now, if I were really smart, I would say in the doctor’s office, dad, the doctor just said, you might have to go on dialysis, is this is something you want? So the doctor hears it. But I wasn’t thinking that was thinking that far – that well that day, but I try to use that as conversation. And I have had conversations about funeral planning. So I’ve asked my mom, what kind of funeral do you want? And she has said, “I don’t care. I’m not there, do what you want.” Which doesn’t help me. So we’ve had conversations.  And interestingly enough, my mom is a bereavement minister at their church.

JANA – You know, it’s like doctors.  They take care of everyone but themselves, right?

DENISE – Exactly. Yeah. So we’ve talked about funerals, where they want to be buried. We haven’t gotten very far. But I keep bringing up the conversation. And then just looking for opportunities to talk about it.

JANA – Yeah. It’s tough. I mean, you know, and their generation, too, they don’t really think of themselves as being vulnerable. Your dad was in the military, right? So he’s probably got some pride going on there, too.

DENISE – Oh, that’s – yeah, so here’s something that’s interesting. So my parents, especially my dad is very active in our local senior center. And on a regular basis, my dad is in their variety show.

JANA – Oh, that’s so cute. That’s awesome.

DENISE – Yeah, he was just in the latest variety show in September. So I went to a variety show, probably about seven years ago. And most of the skits, and most of the conversation was about death.  But it was all jokes.  So it was eye- opening to me. I thought, they’re talking about it with each other all the time. They’re just not talking about it with us.

JANA – Interesting.

DENISE – So after I saw that, I was like, Okay, this is good to talk about because they talk about it anyway. I might as well just insert myself into the conversation.

JANA – I like your approach.

DENISE – It’s all about inserting yourself.

JANA – Yeah, it’s all about finding the right moment, I think, and being constantly attuned to the opportunity to talk about something that might not be comfortable.  You’re kind of always on high alert.

DENISE – Right.

JANA – So what sort of changes have you seen in the caregiving landscape? What’s gotten better? And what challenges still persist? We touched on this a little bit earlier, when you talked about the science of caregiving meeting.

DENISE – Yeah… we research too much, and we spend too much money on research and not enough on help and support. And that has been a problem for 20 years, and it’s still frustrating that that happens. I would say certainly, because there are so many of us, it is a topic that people talk about all the time. So I do workplace presentations and seminars. And I was at a large employer that has space here in Chicago, and I was doing a meditation seminar, and the HR contact for me, for whatever reason, we started talking about caregiving. And she said, Oh, yeah, my sister and I take care of my uncle. And it was interesting because she is not what you would consider to be the demographic of family caregivers. She’s young, she’s probably in her early 30s. And she and her sister are taking care of their uncle. I found that fascinating. So I think it’s all over. And people are talking about it. Certainly the fact that there are commercials on TV that you see all the time, about home care agencies, you know, AARP, it’s top of mind, it’s an experience that is common now.  I remember when I first started helping family caregivers, I had to tell people who it was that I was helping, or were helping, because they didn’t get it. So I would have to use these terrible examples, which I always felt terrible saying, but it was the best way I could say it, which would be: well, let’s say your mom is caring for your grandmother.  I help your mom.  And they would say, huh.

JANA – You paint the picture. Here’s what it looks like.

DENISE – Yes.  Yep. So I would say that, you know, my experience was harder.  It’s harder than it was. So I remember when I would visit family caregivers in Hunterdon County, this little county in New Jersey, was a gentler experience.  You weren’t hospitalized on a regular basis, but stayed in the house. And it was gentler. And now it’s this frenetic experience where you are entrenched in a healthcare system that doesn’t help you a lot, that is focused on the patient, and then asks you to do a lot without really supporting you. So I started thinking about the stress of caregiving three years ago, and actually, I think what really started to get me thinking about it was, I was at a benefits fair at an employer, and there was a vendor sitting next to me, who, for whatever reason, started talking about caring for his mom.

DENISE – And he was standing up, I was sitting down, I remember looking up at him, and he was emphatic in his declaration, and he declared, caring for your parents will kill you faster than anything. I thought, oh my gosh. So I blogged about it. And I still get people who comment on it, that talk about how stressful it is. And once I started looking at the stress of it, I started thinking, well, family caregiver stress is an epidemic in our communities. Because if we think about how many family caregivers there are, and think about how many are stressed out, oh my gosh, that’s an epidemic. So I went on this campaign in 2015 to get the CDC to track family caregiver stress…

JANA – Right, I signed that petition.

DENISE – Yes, thank you. I didn’t get very far. No matter how many times I Tweeted them and emailed them and wrote about it.  So then I thought, well, I’ll just do it myself. So I created this really simple survey that asks family caregivers to rate their stress, one to five, five being the most stressed, and then tell us what the source of the stress is. So what’s interesting is the number has stayed the same for two years. It’s been 4.16. So 4.17 was there for a little bit, but it’s really always been 4.16. Always. Isn’t that interesting?

JANA – Yeah.

DENISE – It’s not ever three.

JANA – It doesn’t surprise me at all.

DENISE – Right.  It’s stressful. It is this constant stress. It’s constant. And that, to me indicates that we are way behind in terms of really thinking about how do we support family caregivers. Because if that stress is constant for that period of time, we haven’t intervened in a successful way.

JANA – Right, and it affects all touch points of our lives. Our workplaces, our families, our larger communities, the healthcare system, the economy… you have to wonder when policymakers are going to start connecting the dots, if ever.

DENISE – There is this picture of caregiving that it’s only about older adults, that it’s only about those who are aging. And really, caregiving is about caring for a family member at any age, with any diagnosis. So caregiving can hit anybody at any age, any gender, any ethnicity. And it’s important that people get that – that it’s not just that woman in her late 40s who is the family caregiver, because then we don’t help all family caregivers.  We only help THAT family caregiver.  And it’s important we think of it in terms of how do we help everyone?

JANA – Yeah, and when you were speaking earlier about the young person who told you she was caring for her uncle – almost 25% of the caregivers in the US are millennials. And so you know, on my show… and on my show, I think it’s really important to interview people of all ages. Anyway, so Denise, you offer a lot of different things on your website: webinars, weekly Twitter chats, campaigns.  In designing these different offerings, what sort of things do you take into consideration? And how should listeners choose among these different offerings? If you can just give us some more insight into these different offerings.

DENISE – Yeah, that’s a great question. How do I figure out what to offer? You know what?  I don’t know. I think I see someone else doing it, outside of the caregiving space, and I think, oh, that would be a good thing for us to do. So for instance, Twitter chats. So I started doing Twitter chats in 2010, because others were doing it and I thought, family caregivers are on Twitter, why don’t we just have family caregivers talk in a Twitter chat?

DENISE – So I also try to think about what’s helpful to a family caregiver and what they can do with their time. So there are daily chats. So you can pop into a chat room at 9am, Eastern Time, 2pm, Eastern Time and 9pm Eastern time. And you can pop into that chat room during that hour for five minutes.  You can stay for the whole hour. So it’s all about how do you want to use your time. In the evening, the 9pm chat, it is the check in. So everybody talks about how their day was. What happened, what they faced, what went right, what went wrong. So it feels like we’re getting together to chit chat over the kitchen table in a neighborhood.

DENISE – The webinars, which are every month, once a month, are really all about finding another perspective. So they typically last anywhere from 30 to 45 minutes.  And I actually encourage people to do exercises as we go through the webinar. So we start with a problem, and at the end of the webinar, you’ve got a draft of a solution. So it’s really kind of turning the tables, so to speak, on what that problem is. And then the podcasts are there to be portable. So if you’re on a commute, if you’re — just need a break, and you’re still in the house, you can put your headsets on and listen to a podcast.

DENISE – And then the blogs are all about connecting. And I would say that the most popular feature on the website are our blogs. And it’s because the blogs are written by family caregivers and former family caregivers. So it’s not someone telling us what caregiving is like for us. It’s us talking to each other about what it’s like for us. And it’s honest, it’s truthful. It’s a snapshot of the day, and it’s relatable.

JANA – So Denise, have you thought about who’s gonna take care of you when you need care?

DENISE – Yes, I think about this pretty regularly. So there’s a couple things that I’ve started to do. My exercise now includes walking and swimming. So I swim laps, because I felt like I can swim laps for a long time. I can’t do other things, like, run, but I can swim laps. So that was the exercise that I started doing to get me into old age. And then I really want to be settled in a place where I know, I’m going to receive care by the time I’m 75. I’m not going to wait. I’m not going to put it off, I’m not going to say it’s not going to happen to me.

DENISE – And I know that socialization is important to me. I don’t want to live alone in an apartment. I want to be a part of a community. I want to be settled, so that my nieces and nephews can come visit me and keep track of me, so to speak, but not have the entire responsibility. That it’s shared.  That where I live, I also receive care.

JANA – And your nieces and nephews, are they on board with this?

DENISE – Yeah, so I have only talked to one and actually talked to her about my death. I told her what I wanted to do with my body. And that I wanted to be cremated. I wanted to make sure she knew that. So my oldest niece knows those things. The other ones I haven’t really talked about. They’re still pretty young. They’re in their early 20s. So I think it’s important to think about it and to plan for it

JANA – Yeah. Do you have a will?

DENISE – I don’t have a will. But I have my durable power of attorney for health care and finance.  I did that seven years ago. And as part of that I included division of assets.  Not that I have assets.  [laughs] But some day maybe I’ll have them? And it’s who gets them.  And so there is that division of assets among the nieces and nephews in there. Yeah, I guess I did do that, too. Wow.  Good for me.

JANA – So what keeps you going, after more than 20 years of doing this work?

DENISE – I think it’s the relationships that you form with family caregivers. And it’s the stories. I think it always has gone back to the stories, I could never hear the same story twice. So for instance, when people register on CareGiving.com, they write their story, they tell their top worries and their top concerns. Now there’s overlapping with worries and concerns, but the story is never the same. And it’s always fascinating to me to read the stories, because life changes. And it’s interesting to see, well, then what do you do? What’s next, when something happens that you don’t want to have happened? I just find that so compelling when you think about the human nature, and resilience. So it’s those stories that keep me coming. And it’s the relationships, I guess that keep me going.

JANA – And if you could give one piece of advice to people listening, what would it be?

DENISE – You know, I think one, one thing that I’ve learned that been very helpful is find what it is that makes you feel good. And then make sure people know about it, and that it’s important to you, and then protect it. So for instance, swimming laps is important to me, my parents know this. And so they are very respectful of it. Did you get to the pool? Oh, you should leave!  Go swim – go! Go!  So because I’ve been up front about it, it’s important to me, I protect that time, I find people follow along with that. I think if I pretend that it doesn’t matter to me, then people believe it doesn’t matter to me. So I think it’s important to really understand what’s important to you. Communicate that, protect it, and then people will protect it for you, too.

JANA – That’s great. Well, before we go, I’d like to offer you the opportunity to offer any last thoughts. Do you have any last thoughts you’d like to leave with the listeners?

DENISE – You know, I think it’s important to also write down the moments during caregiving that seem both insignificant and significant. And you can write it in a journal, you can do what I do, which is blog, but I think it’s important to somehow document the experience.  I guess maybe I’ll back away from writing.  I guess I’ll just use that general term document it.  It could be photos.

DENISE – So for instance, we have a first photo project on CareGiving.com, and the first day of the month we take a photo of our caregiving day. That’s a way to document it.  You could do something like that. You could blog about it. You could write songs about it, you could paint about it. But I think it’s important to document it. Because when it’s over, you’ll look back and think, gosh, did I do enough?  And the documentation is going to show you that you did even more than you thought you did.  That you were present, that you were powerful, that you made a difference, all mattered. And so documenting that shows it to you, and it’s going to be really important to see that after caregiving ends.

JANA – Founder and Owner of CareGiving.com Denise Brown, she’s also an author, speaker, professional caregiving coach, host of her own weekly podcasts, and one of Next Avenue’s Top 50 Influencers in Aging for 2017. You can learn more about Denise and all the ways she can help you before, during and after your experience of caring for a family member or friend, by going to her website CareGiving.com. And of course will also link to that on the Agewyz website, so be sure to check out our show notes. Denise, thank you so much for being on the show. And for all of your amazing work that you’ve done on behalf of caregivers. I appreciate it. And I’m pretty sure my listeners do too.

DENISE – Thank you so much. This was awesome. I can’t tell you how much I enjoyed our conversation.

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