Adrienne Glusman always knew she would have to care for her mother at some point.  It just happened 30 years sooner than she expected.  An only child of divorced parents, Adrienne was 29 years old and traveling the world in between waitressing gigs in New York City when her mother was diagnosed with Parkinson’s disease.  Adrienne initially managed her mother’s care from a distance, flying back and forth between New York and her mother’s home in Tampa, Florida during emergencies.  But as her mother’s Parkinson’s progressed, Adrienne became more anxious.  She finally decided to leave New York and move back to Florida, to be a more hands-on caregiver.  Jana talks with Adrienne about how caregiving has impacted her life and her career, the grueling process of finding an assisted living facility for her mom and juggling visits to the facility with the demands of her work.  Now an entrepreneur and fierce advocate for millennial caregivers, Adrienne says aging organizations need to start preparing themselves for the reality that millennials are the people they’re going to be having the conversations with.  Adrienne Glusman is a public speaker, EMD Serono’s “Embracing Carers” Ambassador and primary caregiver to her mother, Hetty.

Connect with Adrienne on Instagram: @journeyedcaregiver | On Facebook: journeyedcaregiver
Wall Street Journal article featuring Adrienne’s story: “The Call to Care for Aging Parents Comes Sooner Now” (8/6/2018)

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INTERVIEW TRANSCRIPT:

JANA  –  If you were born between 1981 and 1996, according to researchers you’re a member of the millennial generation. And if you’re a millennial who’s an American, your most vivid memory of an historic moment is probably the 9/11 terrorist attacks. You grew up in the shadow of two wars, Iraq and Afghanistan, and members of your generation changed the course of history by helping to elect America’s first African American president. Less known about your generation is the fact that you make up nearly 25% of America’s 43 million unpaid family caregivers. Millennial caregivers face a host of challenges that older caregivers don’t. And there are added pressures for those who don’t have siblings, like today’s guest.  Adrienne Glusman is the only child of divorced parents. She was 29 years old, single and carefree when she became her mother’s primary caregiver. Adrienne’s mother, Hetty, was diagnosed with Parkinson’s disease in 2010. Adrienne Glusman is a public speaker, brand ambassador and advocate for millennial caregivers. Her story has been featured in The Wall Street Journal, and in blogs, including Morning Consult and Women’s Health.   Adrienne joins us today from Miami, Florida. Adrienne, welcome to The Agewyz Podcast.

ADRIENNE  –   Hi, thank you so much for having me. I’m so excited to be here.

JANA  –  So I know that you moved to Florida from New York, but where did you grow up?

ADRIENNE  –  So it’s actually the reverse. So I born and raised in Tampa, Florida.  So I lived there through high school. I then attended the University of Florida, which is in Gainesville, about two hours north of Tampa. And after graduating from college is when I took the plunge and moved up to the Big Apple.

JANA  –   And what a plunge that was.

ADRIENNE  –  Yeah, a great one.

JANA  –  So before you became a caregiver, I’m curious to know, what were your views on aging and on care, generally?

ADRIENNE  –  Yeah. Well, what’s interesting is, especially in your younger years, you don’t really think about it. So my closest experience with aging, I would say, was watching my mom care for my grandparents, her parents who were in a nursing home, and I have some scattered visions and memories of my mom toting me along – I was very, very young – to the nursing home for her visits, and interacting not only with my grandparents, but other residents at the facility. I mean, my grandparents passed away, I have to say I was under age 10. So I wasn’t even that old. But I do have that memory of my mom, who was at the time married, a full-time working woman with a young child, doing as much as she could in terms of going to visit my grandparents and provide for their wellbeing being on a weekly basis.

ADRIENNE  –  It’s interesting, because outside of that, when you’re young, you just aren’t thinking about it. You aren’t thinking about the fact that one day you’re going to get old and need care. And you’re not even thinking about your parents necessarily getting older, and you having to step into the role of caregiver. It’s not until something hits your loved one, be it a freak accident or diagnosed with a disease, that your whole perspective on the term caregiver, and the aging population completely shifts.

JANA  –  So I’m curious to know, if you thought about aging in a specific way at all, based on that exposure at a young age. It sounds like you didn’t necessarily think about it. But I wondered if your views were at all shaped by that early experience.

ADRIENNE  –  Right. So when I was young, I thought of aging as you’re going to live to be in your 80s and your 90s, never thinking that you could start prematurely aging because you were diagnosed with the disease, or because something happened to you.  You know, I always saw it as, we’re going to all live these wonderful lives. And we’re going to age into our 80s and 90s and kind of become old people and then eventually we would move into a nursing home or have to be cared for by a loved one. But I always saw the process of aging as something that you didn’t have to think about or worry about until you were in your 80s and 90s. Very, very late in life. And up until then, life was going to be good, and hopefully, fingers crossed, you’d be able to live a very prosperous and fulfilled life until those ages started setting in.

JANA  –  Uh huh. And so was your mom’s illness, your first firsthand exposure to aging, I guess you could say?  Not to aging but to disability, I guess.  I’m not sure that’s the right word, even. But I think you know what, I’m getting it.

ADRIENNE  –  Yeah, yeah. So since I was so young when my mom’s parents were in a nursing home – my grandfather had Parkinson’s disease, my grandmother suffered from ovarian cancer. And even though these things were apparent, being so young, I didn’t know about them. So to me, it was Oh, these are my old grandparents. So it wasn’t really until my mom was diagnosed with Parkinson’s.  And even at the onset of her diagnosis, it still didn’t hit me because I’d never heard about Parkinson’s other than Michael J. Fox at that point. My mom didn’t exhibit – there were little signs, but I kind of attributed them to, Oh, she’s retired. She’s just being lazy.

ADRIENNE  –  So it really, truly wasn’t until Mom’s diagnosis, and really not until kind of the first big incident that made me realize, okay, life’s about to change, did I start really understanding that someone being diagnosed with a disease, especially, in her case, a neurodegenerative disease that has no cure, that that could speed up the aging process as well in a different way. Not numerically, in terms of a number, an age defined by a number, but an age defined by physical and mental limitation.

JANA  –  Right. So let’s go back to that time that you were living in Brooklyn.  I mentioned in the opening that you were living a carefree life.  What was your life like back then?  This was in 2010, when your mom was diagnosed. What was your life like?

ADRIENNE  –  Right. So I’d been living in New York City for a while. I moved up there in 2004 after I graduated from college, and unless you’ve lived in New York City in your early 20s, it’s, it’s pretty hard to explain. Everybody looks at it as kind of the “Sex in the City” single girl, carefree in a big city and just really having an amazing time. I was at an age where I was still trying to figure out career path. I’d had various jobs in different career fields, but nothing was really sticking. I was really kind of at a point where I was trying to find purpose, and what am I really supposed to be doing with my life? Like what is this job supposed to be?

ADRIENNE  –  So, dabbling in different career fields in New York, navigating the complex role of dating, and just really, I had a lot of really, really great friends up there, hanging out with my friends, going on spontaneous trips, and taking advantage of everything living in New York City in your late 20s can offer, which is a lot. At that time, I would fly home to see my mom, obviously for holidays, and a couple of times in between. and she was able to fly up a couple times to come see me. But I mean, it was phenomenal.

ADRIENNE  –  I found a passion and love for travel. And at the time was working in the restaurant industry where I was able to work, work, work for four months, save up a bunch of money, and then my friends and I would go on these backpacking trips traveling the world. I traveled to 38 countries. So I found this love and passion for travel. And all that was happening when I was living up north, and just having the time of my life. It was a wonderful, wonderful time. And  feel very blessed that I was able to have such amazing memories in such a very pivotal point in my life living in New York, and that the caregiving came later.  Because a lot of people don’t have that opportunity, based on when they need to step into the caregiving role in their life.

JANA  –  That’s a very enlightened perspective – one of gratitude.  But you referred earlier to a pivotal turning point, which I have read about, in 2011. Tell us what happened.

ADRIENNE  –  Right. So being a caregiver, whether you live long-distance, or in the same city, has its own share of stresses and challenges. One of the biggest that I was experiencing as a long-distance caregiver was just kind of always being worried, being anxious, because my mom had fallen so many times, which in turn, you know, at times caused her to not be able to get to the phone, or even – little things would happen. So anytime that I couldn’t reach my mom on the phone, I would just automatically, my heart would just sink.  My heart would drop. I even got to the point where when I came home once to visit, I installed almost baby cameras around her apartment that I could access from an app so that I could always know, okay, she’s not answering the phone, it must be in another room. She’s okay.

ADRIENNE  –  So this one particular time was before I’d even thought to get monitors to place around the apartment. My mom was supposed to go to dinner with a family friend, and I always called her in the morning before I went to work, and we would talk a couple of times throughout the day, and I couldn’t get her. I couldn’t get her in the morning. So I thought, Okay, let me just go about my day.  Got busy with work, and then it dawned on me I still hadn’t heard from her.  Called a couple more times. And then I started getting panicky. And it wasn’t until I got the call from our family friend, saying, Adrienne, I’m at your mom’s. Her car is here. She’s not answering the door.  I called 911.

ADRIENNE  –  And what had happened was, my mom had at some point throughout the duration of the day, we don’t know, she fell and hit her head and was knocked unconscious for – I mean, it could have been 12 hours, we don’t know – dehydrated, without any of her medication. Thank God, she was okay. But it wasn’t really until that happened, that was the point that I knew that everything was about to change, and that my role was going to become bigger than I had ever initially anticipated, even upon Mom’s diagnosis,

JANA  – And what happened next?

ADRIENNE  –  You know, there was a point in time between when she said, We’re calling 911 and when they actually got in to my mom’s condo, I’ll never forget, I was sitting on the floor of my Brooklyn apartment and I was praying.  And I’m not – I’m a spiritual person, I’m not a religious person. I believe that there is a higher power. And I was praying. I was like, I will never ask for anything else in my entire life, just please let her be alive, you know?  And getting that phone call from our family friend saying she’s okay, it was just a huge relief. But then once I was kind of past that wave of relief, it was: I need to spring into action.

ADRIENNE  –  I immediately booked a one-way plane ticket to Florida. And I called my job and I said I have to do this. If I can work remotely, that would be great. Fortunately, they were very accommodating. And I knew that I needed to put measurements into place. At the time, my mom was still living in a condo by herself. So I had to start thinking of, Okay, what do we need to do to make things safer? You know, the first step was, you know, I’d seen the commercials, I’d never thought that I would need to remember them, but I’d seen the commercials for the Life Alert.   So that was one of the first things I did, was put a Life Alert in place. And that seemed to help.

ADRIENNE  –  But every time I kept coming home, I just noticed that she wasn’t able to do certain things. So her condo was on the second floor.  I mean, it even got to the point where I would come home and there would be just, trash bags lining the kitchen, because she was too scared to walk downstairs, down the flight of stairs, to be able to put the trash bag in the trash bin. And living in Tampa, we didn’t have any family nearby, all of our family lives out of state. And although she had good friends, it’s hard because even though you know that you should ask for help – I’m a very independent person, and I felt that I should just be able to do it all myself, as I know that many caregivers feel the same way too.  So it wasn’t even like, can someone come check on her?  I knew that it was more than that. Not to mention, that’s a big responsibility to put on someone else’s plate.

ADRIENNE  –  So it got to the point where I started doing my research. And I came to the conclusion, it just wasn’t going to cut it for Mom to live alone anymore. She needed eyes on her. And she needed a community. She also, as a result of her disease, started withdrawing.  Even though she was retired, and she was waiting her whole life to be retired and to do all these things, she wasn’t doing anything. She was very content with just staying home all day, which I knew wasn’t good for her either. So I did my research. And this was my first foray into senior living. Mind you, I did all the research myself because – and something we can talk about later is, the point where you come to identify with the term caregiver versus just being a daughter and fulfilling your, not daughter duty, but what I always knew that I was going to have to do because my mom did it for me. I just didn’t think I was going to be taking on this role for another 30 years.

ADRIENNE  –  So, flying back and forth from New York City to start coordinating all of the logistics, I finally moved her into independent living, a beautiful, independent living community where it wouldn’t quite be an assisted living situation. But she had her nice apartment, there was a clubhouse where she was served meals, lots of activities, people to interact with. But there was the safety aspect of it, where she wasn’t alone.  There were people that would notice if she wouldn’t show up to dinner, there were people that would notice if her behavior seemed a little off, and call and notify me. So that made me feel better.

ADRIENNE  –  My mom had lived in her condo for 20-something odd years. So I came down, cleaned everything out, got rid of everything. She was a slight hoarder, I must say, and helped coordinate the entire move into Independent living. Went back to New York, that kind of did the trick for a bit. But then again, as I mentioned, it’s a progressive disease. Other things started happening: she wasn’t able to remember medications and if she took medication.  So she started overdosing on medication.  The falls started happening more frequently, to the point where the Independent living would have to call the ambulance for her to go to the hospital. And I would have to drop everything I was doing and book a one-way flight to come home. Because I would never leave my mother in a hospital by herself.

ADRIENNE  – So at the spur the moment I would have to just drop everything and book a flight. I actually remember, early on, before my mom started progressing heavily, I went on one of my backpacking trips and I was gone for five weeks. And this was a long time ago, before we’re traveling to other countries and Wi-Fi is easily accessible and it’s easy to make phone calls. And I’ll never forget that I landed in New York City, turned on my cell phone and I finally had cell service and was able to access voicemails. I had received a voicemail that morning from my mom’s Independent living saying that she had been taken to the hospital. So after five weeks of backpacking Southeast Asia, I got off the plane, I stood in the airport, I got on my phone, and I booked a one-way flight to go home to Florida. And I flew down from that airport. I didn’t go home, I didn’t do anything.

ADRIENNE  –  I had my dirty, 60-pound backpack filled with all the clothes I had been backpacking in for the past five weeks, and booked a one-way ticket home.  At that point, price wasn’t an issue – that’s why we have credit cards – and flew home.  And just the reoccurrence of all of these situations, just were weighing so heavily on me. Even though I was in New York, I was just in a constant state of worry, and stress and anxiety.  Because as much as you want to be positive and you want to think that everything’s going to be okay, I just couldn’t help thinking to myself, when is the next fall going to be?  When is the next hospitalization going to be?

ADRIENNE  –  And every time her Independent living phone number flashed on the phone, my heart sank, and I knew exactly what was going to happen. It was becoming a cycle. And it just wasn’t, it just wasn’t the best situation anymore. Not to mention that I was starting to feel very guilty for being so far away. And not being able to show up for my mom in all the ways that she really needed me.

ADRIENNE  –  So I was 35 years old, and I came to the conclusion that it was time.  It was time to leave New York. I had actually been offered a job working in travel public relations, which was my dream job that I’d been trying to break into for so long. But I couldn’t take it, because life was taking me in a different direction: back to Florida.

JANA  –  Oh boy. So this was a job you were offered in New York.

ADRIENNE  –  Correct. That I’d been waiting for and, you know, had multiple rounds of interviews. And there were just times when the opportunity just wasn’t right.  And then it finally happened, and I had to say no.  And I had to recognize that a lot of things that I wanted in life, were going to have to be put on the back burner for the time being.

JANA  – That must have really hit home.

ADRIENNE  –  It did. You know, it really did. But then I look at my mother, and whether you’re a single mother or, you know, you have the support of a spouse or family members, my mom, my entire life was just so selfless and gave me everything, worked so hard to provide and give me all the things that I wanted in life. And I just couldn’t even imagine not doing the same for her. So it was almost, as hard as the decision was, it was a no brainer. So I moved back to Florida,

JANA  – But not Tampa.  Where did you move to, in Florida?

ADRIENNE –  So I moved down to Miami.

JANA  –  Right. Okay. I didn’t know whether there was a stop in Tampa.  You went directly to Miami. Okay.

ADRIENNE  –  Right. So I was in Tampa for a little bit, while I was doing the transition to Miami. And at the time, I was working in the hotel and hospitality industry. And so a big reason for wanting to move down to Miami was – were more job opportunities, since I was going to have to look for a new job. I had a lot of friends down here, so I felt that that would probably be better, just in terms of being able to have that support system.

ADRIENNE  –  And for the first year of living down in Miami – my mom was in Tampa, and every weekend on my days off, I did the eight-hour round trip drive up to Tampa to be with her, to check on her. Because I didn’t want to uproot her life until I knew that South Florida was a place that I at least could see myself staying for the foreseeable future. So once I made the decision, okay after a year, I was like, Okay, I’m going to start really planting seeds down here, then the next big transition was to move Mom down, because I couldn’t sustain the eight-hour round trip every single week.

JANA  –  Yeah, during the time that your mom was still in Tampa, but you’d moved to Miami, was she still in the Independent living facility?

ADRIENNE  –  She was still in the Independent living, but things were progressing.

JANA  –  She didn’t go into assisted living?

ADRIENNE  –  So yeah, she came into assisted living when she moved down here. But I got to that point, in that when she was living in Independent living things were continuing to progress. I had to start looking into home health care agencies, because she needed help with medication management. She needed help, especially in the mornings, with dressing and bathing, the activities of daily living, were becoming progressively more difficult for her. So bringing on home health agency, and she was progressing. I mean, that was the reality of it. And that’s the reality of the disease.

ADRIENNE  –  So when I knew that I was going to move her down to South Florida, I knew that we were going to have to take that next level of care. And that was moving her into assisted living, which… I think it was more me not wanting to admit that my mom at the time… so this was, she’s been here for four years now. She’s 76. So she was 72… that my 72-year-old mother – and when you see a picture of my mom, if you just see a picture of her not seeing the physical disabilities, I mean, the woman looks like she’s in her 50s.  The most beautiful skin, so youthful, to see her moving into an Assisted living – my grandmother, my father’s mother lived in Assisted living, so that was the picture of Assisted living that I had in my mind.

ADRIENNE  –  And it was just so hard for me to admit that this needed to be the next step. And that this was where I was going to be visiting my mom. So that was an entire adventure in and of itself, starting to look and take tours of various Assisted living facilities. Unfortunately, Miami doesn’t have too many. I believe it’s attributed to potentially a cultural reason, in that it’s a largely Hispanic population. And culturally, Hispanics tend to keep the elderly and care for them in the home.  So I started creeping a little bit further north, and looked at a bunch of facilities. And it was a very depressing time,  The reality of what was happening to my mom was hitting me. And there were some places that I walked in, and I took one look around, and I walked right out and started crying. But fortunately, I found a great place up in Hollywood, which is only about 30 minutes door to door, which is great.

JANA  –  And how many facilities had you looked at before you finally –

ADRIENNE  –  I probably looked at 15?

JANA  – 15.  Wow. And what resources did you draw on, to even discover them?

ADRIENNE  – Well, again, I didn’t take advantage of all the caregiving resources that there are – the agencies that their sole purpose is to help you navigate senior living.

JANA  –  Did you even know about them?

ADRIENNE  –  I think I had a faint idea. I think I’d seen these commercials, like A Place For Mom, or these different commercials, you know, that are out there. But again, and I don’t know if it’s a byproduct of a millennial mindset: just Google it, just Google it.  You’ll figure it out.  Just Google it.

JANA  –  Right. Right.

ADRIENNE  –  So yeah, Google was my best friend through all of these caregiving years. So I turned to Google and started researching facilities in the area, and reading ratings and reviews. And that’s how I ended up finding where my mom is now, which has turned out to be a wonderful place.

JANA  –  That’s great.

ADRIENNE  –  So I feel very fortunate that she’s able to live there, that as a result of her having a long-term care policy, we’re able to afford her living in a nicer facility, and that she has the proper care and attention.  And don’t get me wrong: just because she lives in Assisted living, 30 minutes away from me, doesn’t mean that I still don’t wake up every morning with anxiety, and waiting for the ball to job every time her Assisted living phone number flashes on my phone.  I start getting my stuff together, thinking here we go, I’m going to Memorial Regional Hospital. Mom fell, or Mom passed out, or something happened.

ADRIENNE  –  Obviously, it makes it easier that I am in close proximity, and when she does go to the hospital it’s a 30-minute drive versus a two and a half hour plane ride. But again, it comes with its own fill of new challenges and new guilt. And yeah, it’s a whole new world. So she’s been there for four years.

JANA  –  Does she have private duty care, as well as the care provided by the facility?

ADRIENNE  –  She does. So that’s actually something that she does have, because she’s slower.  And as a direct result of her disease, initially I hired private duty care to come in the mornings to help her with her morning routine. But as of late, I actually extended their hours to be with her more throughout the day.  I got a call from the Director of Assisted living saying that she hasn’t been eating, so now they’re staying to ensure that she’s eating her lunch.  And then the days that I’m not going in the afternoon to visit, they’re coming. They’re getting her up from her nap. They’re toileting her and just being with her, because my mom’s disease has made her a completely different person.

ADRIENNE  –  In her career days, she worked as an HR director.  She was always the person that people would come and talk to, and now she has no socialization skills whatsoever. Even with me, sometimes we’ll be sitting there and I’ll say, Mom, don’t you want to ask me a question, or let’s talk about something. And she’ll say, I don’t know what to talk about. So, it’s a very lonely life for her.  Even though she’s among other residents, a lot of people think she’s mute because she doesn’t talk.  Or that she’s totally not with it. So the private duty care is, on the one hand, to help with the activities of daily living, but on the other hand, just to provide a semblance of company.

JANA  –  Mm-hmm. Companionship.

ADRIENNE  –  Companionship.  Because it was putting a real stressor on me.  Even though I’m there four to five days a week, depending on the week,` for anywhere from four to seven hours, the times that I wouldn’t be there, I would just feel so guilty for not being there.

JANA  –  And you said that she had a long-term care policy, which is something that is not cheap. But maybe when she got hers, maybe was more affordable. Tell us what that pays for.  I mean, that’s a huge, huge advantage that she has. And you have.

ADRIENNE  –  It is. It’s a blessing. Yeah,  I always say that I would be telling a much different story today, if my mom didn’t have a long-term care policy.  So, years ago, I don’t even remember exactly when she initiated the policy, our financial advisor recommended that she start paying annually into a long-term care policy. And as a direct result of that, my mom’s 6,000-plus dollar per month bill, that we get from the Assisted living – it covers that.  And when my mom signed up for her policy, it was an unlimited policy, meaning that the day that she needed to initiate the policy – meaning that she needed to start using the policy – it would never end.  Meaning until the day she dies, she will have coverage.

JANA  – They don’t write those kind of policies anymore.

ADRIENNE  –  Exactly. So a lot of people are forced to wait until the absolute last, dire moment to initiate their policy. You know, I always say that, as a caregiver, I have the physical stress, the emotional stress, the mental stress, but I feel very blessed that we don’t have the financial burden, because I don’t know what I would do. As of now I’m single, I’m not married. So I’m supporting myself on one salary, you know, which is also a challenge, as I’ve stepped into entrepreneurship, really as a direct result of caregiving.

JANA  –  Right. Well, let’s talk about that.

ADRIENNE  –  It would be a totally different story.

JANA  –  Yeah, let’s talk about that. Because you were working nine-to-five in marketing, as I understand it, and you left to start your own business. So tell us more about how your career was impacted.

ADRIENNE  –  Sure. Well, obviously, the days that I was living in New York, my career was impacted in that I was constantly having to just leave at a moment’s notice. I was at a point in time where I was working, fortunately, in the restaurant industry and while I was trying to navigate the next step I wanted to take in a career direction. So I always used to joke and say, I kind of got stuck in this whirlwind of the restaurant industry and, what am I doing?  I’m college educated.  I need to figure out that next career step. But in hindsight, looking back, there was a reason that I was working in the industry for so long and during the time that I needed to show up for my mom. Because no job would have ever let me leave at a moment’s notice, as many times as I needed to, when I was living in New York.

ADRIENNE  –  Fast forward to moving to Florida.  I was working a nine-to-five job on Miami Beach. And if anyone knows South Florida, the traffic, the rush hour traffic is a nightmare. And, you know, after the stresses of the day at work, leaving at 5pm, being stuck in the heart of rush hour traffic, you know, what is typically a 30-minute commute would turn into an hour, an hour and a half, two hours, depending on any pending accident, and, you know, my mom goes to bed at eight o’clock, getting there at 6, 6:30 – just enough time to have a little dinner with her. And by that time, she’s very tired. So we had no quality time, except for on the weekends.

ADRIENNE  –  And then I felt that I needed to use every minute of my weekend to be with her, because I wasn’t able to show up for her like I needed to during the week. And between increased doctor’s appointments – we all know how doctor’s appointments are. Just because you have a three o’clock appointment, typically you don’t get seen ’til four.  And then doctor’s appointments were turning into multiple hours. Fortunately, my boss was very understanding, but it was more of a stressor on me.

ADRIENNE  –  So it just got to the point where I wasn’t even that happy with what I was doing. And after doing a lot of soul searching and looking for purpose, back in 2017, I initially thought my purpose in life since I hadn’t really grounded myself into a career field that I loved, was to be a caregiver. I kind of hit rock bottom and thought that this is what my life is going to be, is just being a caregiver. But after a lot of soul searching, I came to the conclusion that I wanted to step into entrepreneurship.  And stepping out and starting my own virtual Online Business Management Agency, working for myself, working remotely, has been the biggest game changer for me.

ADRIENNE  –  And it was a big leap of faith, having to rely on yourself to be able to bring in your income. But I have to tell you, since I started two years ago, the number of times I’ve been able to work from the emergency room – because we all know emergency room visits are at least 9, 10 hours – [to] be able to work by my mom’s bedside when she’s been in the hospital for 4, 5, 6 days, be able to go over to my mom’s apartment, and even if I’m working, just be there with her. Be able to show up for doctor’s appointments, be able to take her to these specialized exercise classes for people with neurological diseases that are in the middle of the day – I could have never done any of those things, working a nine-to-five.  And though entrepreneurship is challenging, and is another huge part of my life that, you know, finding the balance between that and caregiving and dating and trying to maintain some semblance of a social life, it’s probably been one of the best things that I could have ever done not only for myself, but for my mom.

JANA  –  Mm-hmm. And I’m curious to know what the reaction among your friends your age has been along the way, and how your friendships have changed.

ADRIENNE  –  Yeah. So I’m very lucky that I have a really strong, close group of tight-knit friends. And as I mentioned prior, one of my reasons for not moving back to Tampa, where my mom was living, but instead coming down to Miami, is because some of my best friends live in South Florida. My friends have been a huge support system, because they’re the first ones I turn to when something happens to my mom and I need to vent or I need to cry, or I mean anything in between. And they’ve been extremely supportive.

ADRIENNE  –  What’s definitely been tough is that it’s hard, even though I have the best of friends, it’s really hard for someone just like anything in life, they don’t truly understand what I’m going through on a daily basis. And while they can be sympathetic, and they can be empathetic, there is that bit of a divide, in that they lend their support, you know, always saying you’re such an amazing daughter, like let us know if there’s anything that we can do, we’re here for you. But it has been hard.  I wouldn’t say that it’s broken down our relationship. But it’s really been hard being a young caregiver, and initially not having anyone who truly understands what you’re going through. Not only with caregiving, but caregiving in the midst of trying to find a life partner, trying to lock in a career that truly brings you joy, and all of the other things that people navigate.  Having children, buying your first home, you know, that was really hard.

ADRIENNE  –  And I must say that outside of my close girlfriends that I’ve known since college and prior, what’s been a huge means of support for me is finding other millennial caregivers, through Facebook groups, through various organizations that I’ve been able to make connections with and talk to.  And finally, it’s like someone gets it. And all of those people, though we’ve never met in person – some of us have, some of us haven’t – I feel like are just as close to me, but in a very different way. But that’s been an amazing friend support as well.  Because it is very isolating.

ADRIENNE  –  Your friends ask you, How are you? You know, you don’t constantly want to be kind of the Debbie Downer: well, I’m depressed today because X, Y, Z happened with Mom, or you know, we’re dealing with this and we’re dealing with that. People don’t want to talk about the things going wrong in their life all the time. But I feel when I’m talking to my millennial caregiver friends, that’s all we talk about. You know, it’s 90% talking about caregiving, 10% talking about the other things going on in my life.  So it’s a nice, it’s a nice balance.

JANA  – Yeah. Yeah, I’m just, I’m laughing because really, I think no matter what demographic you’re in, if you’re a caregiver, you’re just so predisposed to talking about – with other caregivers – what you’re going through, because it’s just such a release.  So what’s your outlet?  What do you do for self-care? I know that you’ve loved traveling.  You can’t travel as much.  What do you do for fun, when you get a moment?

ADRIENNE  –  Yeah, I don’t travel as much anymore. Yeah. So since I live down in Miami, I am 10 minutes away from the beach. So I really love connecting with nature, going to the beach, just taking walks on the beach.  I like to try to go in the morning. I’m not a morning person, so not quite as early to see the sunrise. But I try to get out there in the morning to try to set the tone of my day, connecting with nature. And I really like to meditate. I journal, which I’ve just kind of found that free-flow journaling is very, very cathartic.  I love to dance. I danced my entire life. I don’t do it as much as possible. But down here in Miami you have salsa dancing, and different places you can go to salsa dance. I don’t do that as much. But you know, I would really just say just that connecting with nature, with that ocean breeze, the sun on your face, just kind of the serenity of the ocean is – it’s a blessing to live so close to it, because I find calmness and I find peace in just having that connection.

JANA  –  Oh, yeah. That’s great.  I’m glad for you. You alluded earlier to, you know, being involved in some campaigns. And I know that you’ve done a lot of work on behalf of millennial caregivers. What’s your sense of how aware people are, that this issue is really bearing down on your generation?

ADRIENNE  –  Yeah, well, the sad part is, is that people aren’t very aware. And it’s very interesting. It’s really just been, I would say over the course of the past year, that kind of the larger publications and media outlets have started shedding light on the topic. Of course, people have heard the terminology “caregiver,” but people automatically associate caregiver with, typically, a woman, you know, who’s probably 50s, 60s… sandwich generation, has kids of her own, and is also caring for an aging parent. And that’s what I would say is the typical picture that people paint in their minds when they hear the word “caregiver”.  Nobody thinks it’s a 20-something-year-old, who is maybe balancing college classes while caregiving.  Nobody thinks it’s a 30-something-year-old who is trying to land their dream job and get married and start a family of their own, while caregiving.

ADRIENNE  –  So it’s been very interesting. I’ve spoken at a couple conferences as a keynote speaker, and afterwards, I’ve had so many people come up to me, and were just so astounded by the statistics, and the growing numbers of millennial caregivers, not only in our country, but worldwide.  And various caregiving organizations, and these campaigns that you referred to that I’ve associated myself with, are really trying to provide specific ways for not only caregivers to be supported, but also millennial caregivers.  Because we’re dealing with our own separate set of life challenges alongside of caregiving.

ADRIENNE  –  Like I alluded to before, I mean, for myself as an example, I am now 38 years old, I’m not married, I don’t have children, I have not purchased a home. And I actually was just having a conversation with a friend about it the other day, and she was asking me if I were to get to the point that I could have children, would I? And I said, honestly, as much as I would love to, at this point in my life, having cared for my mom since such a young age, I don’t even know if I could balance it. I don’t even know if I could do it. I mean, people do it every day. But it’s such a different reality, when you start caring for a parent prior to having children. And also kind of dealing with all these different life pieces and life experiences. It just totally puts a different perspective and twist on thing.

ADRIENNE  –  And that’s why I’ve really found purpose in my journey as a caregiver, in that I started social media platforms that have enabled me to connect with other millennial caregivers. And even they say, we never knew that there were resources that existed for us.  We feel so alone, it’s so amazing to know that there are other colonial caregivers out there. It’s almost like this huge weight has been lifted off their shoulders, like you can almost hear this huge sigh of relief, in that they can finally know that they’re not alone, and that there are so many millennial caregivers that exist.

ADRIENNE  –  So I feel like there’s a lot of work that still needs to be done, in terms of finding these pockets of caregivers, getting to them, helping them recognize where the resources are, where the support systems are. But little by little we’re getting there. It’s just the numbers are going to be astounding. And aging organizations need to start preparing themselves for the reality that the millennials are the people that they’re going to be having the conversations with.

JANA  –  Yeah, you know, it occurred to me that you’re building a foundation of resources for folks because you didn’t have resources. And I was going to ask, what things would have been helpful to you at the start of your journey? And I’m hearing not enough, and you’re creating that now for other millennials based on that lack, right?

ADRIENNE  –  Right. And I mean, I think for me, first and foremost, just having a support system of people my age who are going through the same thing.  Like I said, I had a great network of friends that I could turn to, but it was a game changer when I found a Facebook group that is specifically targeted to millennial caregivers. And when I got into that Facebook group, and I started connecting with people and seeing the posts that they would post, and completely being able to validate what they were going through and understanding and saying, Yup, me too. Yes, I recognize the frustrations. That was a game changer.

ADRIENNE  –  And what I’ve experienced that so many millennial caregivers want and need is just having that support system. Because I’m in a lot of Facebook groups for my mom’s disease category, and general caregiver groups, and it’s a lot of older people. And while I’ve definitely gotten some amazing resources and recommendations from them, it’s been really hard to connect. And I hear the same thing from other millennial caregivers. It’s the same story. It’s like, yeah, they’re great, but they’re not my age. They don’t know what I’m going through.

JANA  – Yeah. What’s the Facebook group that you’re referring to?

ADRIENNE  –  It’s called Caregiver Collective.

JANA  –  Oh, yeah, I know the founder.

ADRIENNE  –  And it was started by –

JANA  –  Jennifer Levin.  She’s great.

ADRIENNE  –  Yeah.  I got the pleasure of meeting her at a caregiving conference last November, and we have pseudo-similar stories.  So that was really nice to be able to connect with her.

JANA  –  She’s also a New Yorker.

ADRIENNE  –  She is a New Yorker. Yeah. So that’s been a huge game changer. And I hope to be able to, as I have more conversations with millennials, and understanding where they feel the resources are lacking in the future, try to develop more ways to support them, to partner with different organizations and provide recommendations on ways to support them. I mean, the opportunities are endless. It’s just people willing to kind of put in the time and effort to really help support our subset of the caregiving population.

JANA  –  Right. I’d be interested to know, Adrienne, how you think this experience has changed you. A lot of things changed in your life as a result of this, but how do you think it changed you?

ADRIENNE  –  Yeah. Wow, I would say, above all, it’s given me more strength than I ever thought I had. There’s this saying, God will never give you any challenge you can’t handle. And I’ve really come to understand that through caregiving. I think being raised by a single mom and not having every little thing that I wanted at my disposal instantaneously, it really helped me to become a very selfless person. Having to put someone before yourself, like I said, I’m not a mother. So I haven’t had that experience yet. But just understanding that someone right now in my life is more important than what’s going on with me and my mom comes first.

ADRIENNE  –  It’s also given me purpose. Like I said prior, a few years back when I was kind of at a point where everything felt like it was going wrong, and so many things were happening with my mom that I felt just showing up as a caregiver was my purpose. But the journey has really allowed me to open up my eyes to other ways that I can use my experience. Having started caregiving at a young age and continuing to care today, how can I translate that and serve other millennials? How can I advocate? How can I inform? How can I educate?  And it’s really started, little by little, opening small doors here and there, that has given me more ideas.

ADRIENNE  –  I’ve launched a professional speaking platform on millennial caregiving where I’m targeting various aging organizations and conferences, to share my story and bring to light the need to support young caregivers more now than ever before.  So purely just kind of taking this passion project and translating it into purpose and something that is so near and dear to my heart, it comes so naturally to me, and just to be able to connect with other caregivers, with anyone I can share my story with, just to try to move the needle just a little bit, has just been wonderful.  it’s really been an amazing ride, I would say over the course of the past year, and I’m so excited to see what the future brings for me.

JANA  – Yeah, I am too.   I can hear it in your voice.  Well, Adrienne, I want to ask if you have any last thoughts.

ADRIENNE  –  Yeah, I would say to all the caregivers out there, and thank you for taking on this role for showing up for your loved one every single day. I know obviously from firsthand experience, it’s for me been the hardest, most challenging, yet most rewarding journey that I have ever experienced. I never in a million years would have thought I would be in this place right now. But I think little by little if we just take it a day at a time and try to see the little glimmers of light, stay present, just focus on the here and now, and a huge learning for me is just to really just enjoy the moment.  Through all the tough times and the tears and the frustration, to enjoy those cherished moments with your loved one. Take pictures, create memories, anything that you can, because the reality is they won’t be with us one day and we need to do all that we can now to truly love, cherish and enjoy the time that we have with them.

JANA  –  And how can folks get in touch with you if they want to learn more about what you’re doing?

ADRIENNE  –  So I am on Instagram and Facebook. My handle, you can find me is journeyed, J-O-U-R-N-E-Y-E-Dcaregiver, that’s all one word, journeyedcaregiver. You can find me on both platforms where I share photos of my mom and I, caregiving challenges, quotes, links to articles and resources. And also just a space where we can not only share the struggles, but also the laughter and the joy as well.

JANA  –  We’ve been speaking with Adrienne Glusman. She’s a public speaker, a brand ambassador and fierce advocate for millennial caregivers. Be sure to check out the show notes for this episode where we’ll provide you with all kinds of information about Adrienne’s work and ways that you can connect with her, which she mentioned here, but which we will also mention in the show notes. Adrienne , thank you so much for being on the show and sharing your amazing story and for your strength and your fortitude and your courage. Thank you so much for being on the show.

ADRIENNE  –  Well, thank you so much for having me. I truly appreciate it. It’s been a great conversation.