Why Families Wait Too Long for Estate Planning: The Conversation Every Caregiver Needs with Julie Fry — Full Episode Transcript

Welcome back to another episode of LT CareNav's Care Compass. Today we are joined by Julie Fry, who is the co-founder of Gentreo. And we've had her sister Renee on and it was so great talking to her. So I'm excited to have you on to continue the conversation about all the great things you're doing.

Well, thank you so much for having me on, Lindsay. I'm really excited because this is something, and caregiving is so close to my heart because I've been a caregiver, I've been in this industry for over 20 years, and I realize how critically important it is.

And so I'm gonna ask you because you have been this caregiver and you've built a company that really is focusing on life milestones and a lot of those life milestones come with caregiving at some point. So can you tell us more about your 20 years experience? What that does to bring to Gentreo and how you're implementing both those things?

Absolutely. I used to work in DC after 9/11 and worked for a law firm, and then went to my next position and they said, you can work in any industry, what do you want to do? And I came back with, I want to work in elder care because, A, these people need so much help, and B, people my age aren't doing it right now. And so I was fortunate enough to be one of the leaders of the National Association for Home Care and Hospice, which are the professional caregivers. And then I helped start the National Private Duty Association, which are basically professional caregivers where people pay for it a lot of times out of their own pocket. And that home care and hospice experience was so important to me because the work that these professionals do is so undervalued and it's so critically important.

And it all focuses around that family caregiver. Later on, after I worked with them, I did some startups. And then our father got sick and got Alzheimer's. And when he really hit the end of dementia, it was a really odd time because it was during COVID. And so we actually picked up and moved to State College, Pennsylvania — we're all big Penn Staters. And we ended up becoming caregivers. Like overnight, it's all this stuff that you had never even thought of, never imagined doing — putting pill boxes together, giving showers, ordering shower chairs, hospital beds, changing Depends, dealing with the attitudes. All of a sudden, we became caregivers.

Not only that, but we were so fortunate because our mom was an amazing caregiver and, you know, on average these spouses are spending 40 to 60 hours per week just only providing care. And it was during a time where nursing homes couldn't take patients, and so we didn't really have a choice — we always wanted to keep Dad at home because that's what he would have wanted. And so it really became a whole family effort between my mom, myself, my sister — even my nephew, who was little at the time, would come in and bring towels to us. And my dad, it was really interesting, because my dad forgot who we were and wouldn't react to us. But when Liam would come in the room, he gets this big smile on his face. So it truly is a family initiative. We really learned about being that caregiver and went through it all.

And before he got sick, we had done their elder care plan and then their estate plan. And it cost us a ton of money. And we walked out of there and we're like, this is insane. Everybody needs to do an estate plan just to make sure that their families are protected, their spouses, their kids, their assets, and most importantly, their choices. We're like, it's so unattainable for most people because they're like, I don't have a mansion. I don't have an estate. I'm not super wealthy. But in reality, it's more about what you want your choices to be.

And so from that, we actually started Gentreo, and it was born out of the need that we saw because so many people were unprotected. Especially now, as you know, the greatest generation is aging and the baby boomers are starting to pass on all of their assets, and they're passing on themselves. And all of a sudden, all these families are now in that sandwich generation where they're caring for their parents, they're caring for their adult kids, they're caring for grandkids. We wanted to make sure that we had solutions. So that's really what we wanted to do when we started Gentreo — we wanted to make it an easy process to do your estate plan, affordable and quick, because so many people don't even know what questions to ask. They don't know what they need. And so what we wanted to do was kind of give them a playbook so that they knew, hey, I'm caring for an elderly parent, or my kid's about ready to leave for college — what do I do? And we wanted to make sure we gave them those tools.

And it's so great because some of the kickback I've always heard when people are talking about estate planning is, one, I don't need it now, two, it's too expensive, so it's not in my budget now, and it takes too long. All these things, right? And you've taken literally every one of those out of the equation. Like, sit down, watch TV, open your app, make some decisions, and you've done it.

Now, this is the one thing where we know it's not an easy process. Even if you can go through and click things a hundred miles an hour, that's great. But we also know that these are decisions that you have to put some thought behind. Personally, when I got started, I too put my own estate plan together and I was like, pull the plug. And then I got diagnosed with cancer and I was like, put it back in. I was like, I'm too young for this. And so I made changes on my estate plan because I wanted to make those changes.

And then I ended up naming my sister as the one who was my health care proxy. But I had really specific conversations with her, because I don't want to burden her. When we went through the process with my father when he was passing away, and they came and they asked my mom, do you want to give him pain medicine, or do you want to do life-sustaining treatment — they turned to her and you could just see her face just drop. Thankfully we were in the room and we said, no, Dad already made these decisions. This is what Dad wanted. You don't need to make this decision.

And which is great, because that good Catholic guilt — she would have lived with that forever. But instead we could say, this is what Dad chose and this is what he wanted. And that took such relief off of her. These stories are what we hear all the time, because you know this is a horrible process for your spouse or your family to go through, and anything that you can do to make your family's lives easier, most people want to do that. And now we really just wanted to make it so that it's easy to do. You tackle those hard decisions. You can go back and you can make changes as you need them. But you want to make sure that you have things organized so that the people who are caring for you when you need it have all that information. They know what your decisions are, and it's a relief for them.

Yeah, I took care of someone. So I kind of followed your path as well. Like I was a professional caregiver, I was in that space working elder care before I became a family caregiver. I went into software and technology and then circled back when I became my grandma's family caregiver. But I worked private duty for a man who was in his 50s. And at the time, I thought he was so old. Now as I'm getting there, I realize he wasn't so old.

No, 50s is nothing. Push out. Hit me when you're in the 80s. There we go.

Yeah, but in 2022, he felt old. But he was living with his mother and his sister. And he was in a wheelchair. And he was this brilliant psychiatrist. He specialized in dissociative identity disorder. Brilliant. But he was in a wheelchair. He couldn't stand up on his own. He had been in a car accident. He didn't have the documents in place.

He had no documents, because he was 50 and he was so young. He didn't have these in place, and he ended up in a coma for over a year. And they kept telling his mom, there's going to be extensive damage. He's not going to be OK. And she said, this is my son. I'm not pulling the plug.

And he came out and his speech was slurred. He couldn't stand up on his own. He was very shaky, uncontrollably shaky. So I went in a few times a week to shower him and just help him get dressed. And he would say to me almost every time, I can't believe they did this to me.

I mean, it's so heartbreaking because the hard part is that if you don't have those decisions made, if you don't know what your choices are, then you're left letting them decide — or worse, the courts decide. Because unfortunately, we don't know what's going to happen. When I was in my 40s, I got diagnosed with cancer. They did surgery and said, you're fine. And seven years later I was like, hey, I think I have a hernia. And it wasn't — it was the tumors coming back. And so now I've been fighting stage four cancer myself, and this will be my fifth year.

And it is insane because I'm like, I'm so young, and most people would never know what people are going through. I never would have thought about it, because I always thought I was invincible. And then all of a sudden life happens, and you want to make sure that you know what your choices are and you want to make sure that your family does as well. These choices are so hard to leave just to your family, because making them live through, my gosh, I had to make the decision to kill my husband or to kill my son — that's what they are living with. Like our mother, even though Dad made that decision, she really held on to that guilt for years. There are so many emotions that you have to deal with when somebody has not only dementia but is chronically ill and passing away.

And going through that process for two years, at the end my dad couldn't speak because that was part of his dementia. He couldn't speak for six months. And after he passed away, almost a year later I was talking to my mom and she's like, I still can't believe that I was having conversations with him at the hospital and a day later he was gone. And I was like, you're having conversations with who? But she just remembered it so differently because it was such an emotional time for her. And then she still held onto it. And then we had to go back and reinforce it and be like, no, Mom, Dad couldn't speak — he would grunt and he would make his choices known. This is what the reality was. And thank God we had had these conversations before Dad progressed to that point. Because if not, she would still be holding on to that. And it's been years since that happened.

Wow. And that's such a tough one too. I feel like we live in a world where when you're a caregiver, you can care for so many things and it's one experience. But once you hit dementia and Alzheimer's, it's really a whole other world that you're getting ready to enter — which actually makes having these conversations prior to diagnosis, or at least at a point where you can still make these decisions, so important. Because as you saw, you're not going to be able to speak, you're not going to be able to make the decisions, and it is hard to put on somebody else.

But not only that — now that I'm involved in the elder care planning part of it, we realize if you don't make these decisions now while you're still mentally competent, you can't later. Gentreo is $150, where you can go in and make all of your documents and get them done. You can do it yourself. You take it to the bank, you get it notarized, witnessed, and that's a legally binding document. Great. But if somebody gets dementia or is in that coma and can't actually make decisions for themselves, you're going to need a guardianship, which means you have to hire a lawyer. You have to go through the legal process of the guardianship, and then eventually you can make those decisions for them. But during that time, it's super expensive. It takes a long time. It takes so much time out of your day.

And it's another hassle, because not only is all this happening where you're dealing with lawyers, you're dealing with courts, you're dealing with assessments — but surprise, you're also the caregiver. Dad was in a wheelchair, Dad couldn't toilet himself, Dad couldn't feed himself, Dad couldn't take his medicine. And we had so much in our day just to do that, let alone having to deal with the county and the lawyers. We were fortunate because we didn't have to.

And thankfully there are resources out there that are available, but there's a lot that goes on. And this is one of the reasons we are so excited to be involved with you, because your company, LT CareNav, gives so many great resources — and not only gives you an idea of what those resources are, but you give local resources. You give things that a lot of people don't even know exist. Like our father, for instance — he was in the Navy and so we had the VA, and that VA assistance was amazing. They bought his Depends. They bought his hospital bed. He was a diabetic and we were able to get the pen injections for his insulin instead of the needles. All of that was either super, super affordable or provided for him. And you have a whole section on veterans. Finding those resources is hugely important.

Absolutely. There's so many hidden little gems that are out there that are affordable and that make things more accessible that people just completely overlook. Or when you're hitting one professional for something, they don't even realize. So that was really what we tried to do with pulling it all together. And that's one of the things I really love about our partnership, because you're doing something that everyone needs and it's so affordable, and you guys are coming at it from not just here's some tech, here's some legal docs. I love the companies that are formed out of, we've experienced this, these are the issues we had, and here's how I'm fixing it for you.

Well, because when you live this and you realize this is what's happening, this is what I needed when I was going through this situation. And if you could actually find that information, that's huge. That's such a big relief, because you don't have time to be your number one resource researcher. And something like LT CareNav or like Gentreo, when you go in and you're like, this is what I need, get it done — that's the one thing we wanted to do, make sure this is what you need, get it done.

Yeah, and it is like you're talking about — you were there. Caregivers are overwhelmed and you don't know where to turn and there's so many options. I know as caregivers you're trying to dig out of the mud puddle you're in, clawing your way out. But there are solutions that aren't going to throw more mud on you.

Yeah, absolutely. When you're a caregiver, so much of your life is — not only do you have to be a full-time caregiver, but you have your own life too. How do you get respite? Like, I just need to sit down and watch Jeopardy. Just give me 30 minutes to watch Jeopardy, or to do whatever you love to do. But then most people are still working.

There was a time — this was way before Dad got sick — my sister got sick and my mom went out to take care of her in Boston, and I was living in Illinois and my dad was in Illinois. But he was so used to my mother doing daily tasks like cleaning the house and making his food that I would actually drive up and I would make all of his meals for the week. And then I would clean his house and then I would help him do what Mom did. Then I would drive home and spend four days working and taking care of my own life. He did not have dementia at the time. He just was needy.

These are things that so many people just willingly take on — this is what life is. Life is, what do you do now, and what is then the next thing? For me, my cancer doctors and my nurses, I don't think they are used to someone like me. Every Monday I go in for treatment and everybody's always so quiet. And then I come in and I'm like, and then this happened, and then this happened. And they're like, tell us about the Austrians, did you have to go to New York again? And there was a lady who would keep walking by my chair — we're sitting in little cubes — and she'd look at me, and I'd be like, hi. She's like, we're sitting over there and you're just cracking us up. We didn't know if you were with somebody. And I was like, no, I am the body.

And I was like, you know what? This is what's on my agenda for today, and then I have to do this, and then I have to do that. I'm not going to stop, because I have too much to do. This is what my life is, and unfortunately this is what life is. And so you just take it one step at a time. With caregivers, it's the same way, because you've got so much going on. You take it one step at a time and make sure you find what resources are out there and get help. Because when you finally get to the point where you're overloaded, you don't have a choice but to slow down. So get the help before you really need it, while you can.

Yes. I always look at the caregiver thing as like the boiling frog phenomenon. You're boiling — you're in really, really hot water, but we're just turning it up so slowly that you don't realize that you're going to become frog legs. You're dead before you realize.

Yes! It's so true! You're just like, I handled that. I handled that. I can handle that too. And then all of a sudden something happens and you're like, okay, uncle, uncle, I need help. And this is the one thing where finding resources now is so important, because you don't know when you're going to need it. And for us, one of the things that we keep trying to emphasize to people is get your planning done now. Because when you're in a situation where you're going to need care or you're becoming a caregiver, there's so much to deal with. Having to go through these really expensive, time-consuming legal processes — when you can knock it out in an hour and get it done — spend the time now, because that ounce of prevention is worth that pound of cure.

Yeah, and we never know, really, truly. This is the hardest thing about everything. My husband always says that we live in a big claw game — you know the big claw game that pulls the toys out of the thing? All of a sudden something comes and goes, I'm gonna pluck you out, you're gone. And we've lost friends where it's literally just been so sudden. They were totally fine and something happened and they're gone. And we never know when that's going to happen to us. We want to say later, but nobody's guaranteed later, which is a horrible, hard thing to deal with. But if we're the toy that's plucked too early, we want to have been prepared for that.

Well, and we're also at the point where nobody knows what's coming. And we know that this is another thing we have to add on to our day to do. But if we don't do it now, not only is it going to limit what your choices are — like you said, for the gentleman you cared for, he knew what his choices were, but he never made those choices. So all of a sudden he's giving them over to somebody else. And not only that, but when your family has to be put in that situation, give them the tools so that it's easier for them, because it's going to be hard enough as it is. You want to make sure that you've prepared and done everything that you can to make their lives at least a tiny bit easier, because again, the heat's always going to get turned up and turned up and turned up. If you can do anything to slow that process, do it.

Yeah, and you can really put yourself in a position where it doesn't get turned up, because you're prepared for each step. So every time something turns it up, you can be like, hey, I'm good, I'll go over to this pot, I'm going to get into another place, I'll be fine. This has been great. I have another conversation that we don't have time for today that you and I are going to have next time.

I love it. I have so much fun talking to you, because when you've lived through this and when you know what the ins and outs are, it's really important to help others — because if you don't know what's coming, you can't prepare.

Yeah, and that is the one thing I can say to listeners — Julie and Renee, whose episode you can go back and watch, they really care. And they are such fantastic ladies that I am so privileged to be able to know and work with. So thank you both.

Well, we are so excited to work with you, because what you do is so important and it's such a great, great tool that anything we can do to support that would be great.

And us for you guys. You were wonderful. So everybody, Julie's gonna tell you where to find them, and go get your documents.

Yep, so we're called Gentreo, which is G-E-N-T-R-E-O dot com. You can go on there and sign up. It's $150 the first year, $50 a year thereafter if you want to continue, and you can create all of your documents — your will, your health care proxy, a trust, a joint trust, your power of attorney for finances. And more importantly, you can find, during life milestones, what are solutions and tools. And so I look forward to helping you help your family and help protect your own choices. So Lindsay, thank you so much for having me today.

Thank you. And you can also find them in 100 different spots throughout LT CareNav as well. So until next time, thank you.

Love it. All right. Thanks all. Have a good day.