The Plan No One Wants to Make: Niki Weiss on Death, Caregiving & the Digital Life We Leave Behind — Full Episode Transcript

What's your plan? Now, she's ninety-two, she is estranged from her children, a widow, so she really at that point was kind of a solo ager and really didn't have anybody. She was depending on her next door neighbors. Again, this is market rate apartment living, so there was no one really looking out for her. And in her mind, she's like, 'I'm just not gonna wake up one morning. God's just gonna take me.' And I said, 'That's great. But what if you do wake up one morning and you can't get out of bed? Then what?'

When caregiving feels overwhelming and the system feels impossible to navigate, this is your guide. Here, you'll learn ways to navigate long-term care planning, find real support for caregiving, and prepare you for the road ahead. I'm your host, Lindsay Friedman, and now you're not in this alone. Let's get started.

Hello, welcome back to another episode of LT CareNav's Care Compass. I'm Lindsay Friedman, I'm your host. Today we're here with Niki Weiss from ENDevo. And I'm super excited to have you here, Niki.

We have just made such a connection, Lindsay. I love that we're in this care-death-tech space together and educating people, offering them services.

No, me too. You've been such a pleasure. And so I always tell my listeners — I truly know everyone that I bring on. So when we're recommending products and people, Niki is amazing. But to start, we always start with: who are you? What do you do? And tell everyone why you do it.

That's it. So I'm easy to find — Niki Weiss. You'll find me on LinkedIn as a digital thanatologist. So thanatology is a word that most people aren't familiar with. Thanatology means the study of death and dying. So I am a digital thanatologist because I specialize in people's digital afterlife. So think about death and dying in the digital age. We met because I have a company called ENDevo. So ENDevo is for end of life development. Most people, they don't have a comprehensive end-of-life plan. They might have pieces of it, but they certainly don't have that full-on 'if life happens' — whether it's death, dying, or incapacitation — what is that plan?

People ask me, how did I get here? Like, how does someone become a digital thanatologist? Before we met, Lindsay, did you know what a thanatologist was?

I did not.

And what was your big aha moment when you're like, that makes sense? And how does it relate to the work that you're doing?

So I think for the work I do, we always have to kind of — when we talk about long-term care, the next step after long-term care is obviously dying, and what does that look like? And the conversations we always have are around estate planning or docs that happen if you're incapacitated. And you taught me that that was more just like this tip of the iceberg — that most people don't even get to, right? They don't even touch the tip, but there's so much more. And so you really taught me about everything that lives underneath and how that actually supports the top. So it has been very eye-opening, to understand all the things we're missing, especially with the changes in the digital world.

What else? All the pieces, right? So — and you hit on it. When we talk about incapacitation, that's actually a form of death, believe it or not. So when I talk to people as a thanatologist about death and dying, I say, listen, death is a taboo topic. We're gonna break through this taboo topic. We're gonna educate, project-manage, and empower people to start building out that comprehensive plan — the end-of-life plan.

And when we talk about end of life, we're talking about three different possible scenarios. Part of living is dying. We're all gonna die. We'll die one of three ways: either a sudden, unexpected death, like a car accident, a tsunami, an accident; or we'll get a terminal diagnosis; or the third way we die is that we need a long-term care plan, because that death of the life that we've lived is a form of a death. And we need to start planning the legal, financial, physical, and digital aspects of that life.

It's interesting — I actually have an easier time talking to 40- and 50-year-olds than I do 70- and 80-year-olds. For whatever reason, if a 70- or 80-year-old doesn't have a long-term care plan in place already, I feel like there's this level of deep resistance and they just don't want to plan. They don't want to talk about it. And it's just brushing it under the carpet. Well, for families and the financial pieces and the legal pieces, it's super complicated. So I'm here to just empower and try to educate people about — can you build a plan?

Yeah. And I think that's so important. And I have some theories about why it's easier to talk to people that are not in the moment, right, than the older folks. I think it's because it becomes more scary and more real. And talking about dying when you're closer to it is far more challenging. I have better conversations like you with families where they're more like 10 or 15 years out from needing care than those who are in the moment. It's a harder decision because it seems less real and more like, pre — more of an insurance policy when you talk earlier. And I think that's part of the reason I've seen. Do you agree?

Well, the story I always tell is about my 92-year-old aunt, who was driving up until she was 92. We were in the car, and this was maybe two years ago, and I was trying to explain to her about what's her plan. At that point she was still living independent, in an independent apartment, market rate apartment — it wasn't like a care facility. And she was still driving. I said, Aunt Toby, what's your plan? She's 92, she is estranged from her children, a widow. So she really at that point was kind of a solo ager — she really didn't have anybody. She was depending on her next door neighbors. Again, market rate apartment living, so there was no one really looking out for her.

I said, Aunt Toby, what's your plan? And in her mind, she's like, 'I'm just not gonna wake up one morning. God's just gonna take me.' And I said, 'That's great, but what if you do wake up one morning and you can't get out of bed? Then what?' And again, 92. And it was as though I just told her she didn't realize the sky was blue. I mean, it was that sort of like, huh? I didn't think about that.

So fast forward, because the mayhem did happen. She didn't get a plan. Her children are not involved. And she had to go out and depend on her dead sister's children — so her nephew, who's also in his 70s. So she had to depend on him to step in. And when I say step in, I mean thank goodness he was willing and capable, because to become an executor or power of attorney or to do all the paperwork for a medical advanced directive, he took that on, moved her out of her apartment when it came to the point where it was obvious that she couldn't drive anymore and she couldn't live by herself.

And the time and energy and cost to move her into an assisted living care facility — and then the complexities around that, like moving in at 94 years old instead of in your 80s, the cost is skyrocketing by then. And the resistance — she still was going in very resistant. So stress-wise, financially, legally, for everybody, it was a challenge.

Yeah. And those stories are so common. But what I really love — because as you mentioned, all those docs that have to get in place, now that we're living in such a digital age and our lives live on our phones or computers — how do you set people up for that? And what are the things that they need to know?

So just accept the fact that part of living is dying — we're all gonna die. Can we go there, no matter what your age is? And when we talk about caregiving — I mean caregiving is not just for the elderly, right? I have clients who have special needs children. There are moments of incapacitation because of an accident or an event, a medical event that happens. So what we do is focus on planning.

Now, if you look up my LinkedIn profile, you'll see that my background initially, in my first part of my career, was in hospice. And then I moved into project management. So from a project management standpoint, we really want to educate people on what the process is, the administrative process to start organizing your life, both from a hard-copy situation and then translating it and transferring it digitally. Because the decisions need to be made. Documentation needs to be done.

So what we do is — we first accept the fact that there's going to be a life event. Then we start to build out that project plan. We have you do what we call a peace of mind assessment, which is like a risk assessment. From that risk assessment, it is determined what you have from a legal standpoint, financial, physical, and digital. And in that physical piece, we put that caregiver piece in there, right? So who's physically going to take care of you when you cannot take care of yourself anymore?

And so we're working with our clients to reflect: what does your life look like? Are you someone who has a very large family that you know, love, and trust — people in your lives who will take care of you? Or are you on the opposite end of the spectrum where you're a solo ager by choice, perhaps, where you're living your life and you don't have that traditional core family values? And then you're going to need to lean on either professional services like professional fiduciaries, or neighbors and friends.

So once that's reflected, then you decide: okay, who are going to be my designated people? If we're talking just on the caregiver side, we're probably looking at two important documents. One is that medical advanced directive, and the power of attorney for financial — durable power of attorney for financial. Those are like the important documents.

But now from a legal side, now let's look into the financial side, right? Where are all your accounts? Are they consolidated? Are they accessible? Is this going to be a roadmap for somebody to manage your life when you cannot manage it anymore? Or is it going to be a treasure hunt — and someone is going to be missing a bank account or life insurance policy or that long-term care insurance that you've been paying for, but you don't remember where the document or who that point of contact was?

How about the physical piece? When we talk about physical, do you live in a state that would allow options for end of life — Medicare, Medicaid, death with dignity, if you're not familiar with that term? Hospice, palliative — like, these are terms that people might not be familiar with.

Then we look at the digital piece, right? So maybe an 80- or 90-year-old, their digital footprint might be very small, maybe. But I would ask: do they have social media accounts? They might. Are they set up in a way where they can be memorialized or shut down? Do they have a list of all of their recurring subscriptions? How many pictures do they have in their phone? Do they have what we call — and you and I talked about it — their legacy contacts set up on their phone, right? So just getting in the phone alone is a huge management. But Lindsay, the point is, this is not something that needs to be taken lightly. This is actually a project that people really need to start thinking about today, not wait for tomorrow.

And when we talk about thinking about today — so somebody listening, besides the fact that I think everybody should just contact you because you need a partner in this. This isn't like a do-it-yourself thing. But for somebody listening right now who might be in the car who's gonna turn this off after, what is the one thing that you start thinking about before you even maybe have a conversation with someone who can help?

Before you start with a professional, you need to think about your values. Like, what do you think about with death, dying, incapacitation? Let's just focus on incapacitation, right? If something happened to you — you're in a car accident, a devastating car accident — and now you're paralyzed, right? Who is going to take care of you?

Or maybe it's not for you. Maybe you're the caregiver and you are now responsible. You're looking at your parents and thinking, you know, they're just one car accident away, a mild car accident away from taking the keys away. Or what if mom or dad have a stroke, or a fall and break their hip? How is — and you get that phone call? Like, you're gonna get that phone call. What's the plan?

Analyze, look at your life, realizing that it's a house of cards, especially for the sandwich generation. Actually, Lindsay, I call it the panini generation. Right? It really is — I call it, it's not a sandwich, it's nice and fluffy. It's like the panini that is — there's so much squished in and it's hot and it's just…

So what happens to that panini generation? So again, first step is reflect. Just reflect — like, huh, realize this might not be a problem today, but if you got that unexpected phone call tomorrow, what are you gonna do?

So I start to ask my clients to look — it's hard to imagine and I know it's scary and taboo, and we've got 10 reasons why we don't wanna look at these problems. It could be procrastination, 'it'll never happen,' denial, the cost, family dynamics — like, my gosh, thinking about if we got the call and I've got siblings and some are involved and some are not. Or just the privacy piece — mom and dad really don't talk about this stuff, or they don't want to talk about the 'what if,' they don't want to give, you know, bad luck, superstition.

So reflecting, and then deciding like, are you ready to tackle this situation? It's gonna take a fair amount of thought, but there is a plan in place. There is a step-by-step process. So I would say you have to be ready. If there's someone out there that's thinking like, yeah, check — I acknowledge it's a problem. Number two, check — I wanna make sure I'm as well prepared as possible. And the third check is you're ready to start moving towards building out a comprehensive plan in place.

And that plan, what does it consist of?

Stakeholders. Who are the people that are going to be involved if you get that call and mom or dad need care? Like, start making assignments, having that family conversation, that kitchen-table conversation. Okay, now we need to start organizing the legal, financial, physical, and digital aspects. Just deciding and realizing, then committing.

I think that is so important because there's so many things that have to fall in place. And I don't think people realize, like especially on that journey to caregiver, and at the end, everything that it entails is more than you're ever thinking of. And it's really interesting because I know on your website you have it at 67% of families are not prepared — they haven't even had these conversations. And I want — I think we need to talk about, you know, these people who haven't planned, who are going, no, you're not alone. Like you're the majority. And how do we start to change that conversation? How do we make it where the majority of people have planned and it's a few that haven't? How do we turn the tables?

My gosh. So the term I use is this is the next level of adulting. It is, Lindsay. So one question when I'm talking to my clients — and we'll just again focus on the caregiver role — I'm talking to my clients and I say to them, 'Your parents are still around?' They're like, 'Yes.' I said, 'Do they have a will or trust?' And there's always that hesitant: 'I think they do,' or 'Yes, they do.' And I say, 'Have you seen it? Do you have a copy of it?' And it's more than 80% of the time they're like, 'No, I don't have a copy,' or 'I'm not sure where it is.'

So that's number one. And then I can hear the hesitancy of, I'm like, well, you need to go get a copy. And their hesitancy is like, 'I don't want to ask mom or dad if they have a will or trust. They're not comfortable, so I'm not going to be comfortable.' And that's where we empower people to say, like, no, this is important. This is that next level of adulting.

And you have a window of opportunity to clean this up before there is a death, before you find out that the will they have is not valid, or it wasn't executed, or it's outdated, or the people on it shouldn't be on it anymore. Because then there's the reality — probate hell, right? The cost, the mental health, the fact that you're now gonna have to hire lawyers. And who wants to go through that after you've just been through 10 years of dealing with a parent that's had Alzheimer's? Like you're exhausted already and you're grieving their loss.

And by the way, now you have to go through because the documentation wasn't put in place. And not me — this is such a quick conversation, but the whole house piece. Like, people don't realize the complexity of — they think that, mom's on Medicare and Medicare is gonna take care of the costs, but we still own the house, or the house was passed on to the family.

Lindsay, we don't, you know, with the few minutes we have left here, I can't even get into the mayhem of that misunderstanding that people think that the state is gonna take care of them if mom's on Medicare. No. Mom dies, and the state is gonna come after the cost of her care over the last three years and they're gonna want a piece of that house. Even if you own it.

Yeah. There is a lot I think people are not aware of when we go to that long-term care plan piece of it. It is expensive. Dying is expensive. And I know, like, you can't get out of anything on this planet without it costing an arm and a leg, right? Like, you don't think that your death is gonna cost someone a small fortune if you don't have that prepped for.

What did Benjamin Franklin say, right? Two things in life that you can't avoid: death and taxes. And both of them come at the same time. At the same time.

And the other — I get this a lot where people are like, 'I don't have anything.' But you do. You do have stuff. If you're on this planet today, you have stuff. And someone's gonna have to shut that down. Someone needs to be responsible. And like that's where that next level of adulting comes in. And that's why I think you and I work so well together. You know, our services really are there to educate and empower people and let them know there are tools in place for them not to go in this blind-sided, not to go in feeling insecure, unprepared. If they start today and give the time needed, the attention, they can be empowered and feel ready.

And it really is when you have those last moments with a loved one, to not worry about all the little things, the legal, the financial, to have those moments that aren't in complete anxiety other than your goodbyes — I think is so important. I mean, you know, do you want to be buried or cremated? You want to be cremated. Do you realize that now with cremation you have umpteen opportunities, you know, to what to do with the remains?

Like, you're cremated. Do you want your remains to be sitting on a shelf somewhere for the next 20 or 30 years? I mean, even like little decisions like that. That's all part of this pre-planning conversation. Building out a final playbook.

No, I think it's so important. So can you tell people where to find you, where to find your playbook, and how to get started?

Yep. So as I said, if you look up Niki Weiss, digital thanatologist, I am all over the place. So LinkedIn. We've got ENDevo — ENDEVO.life, NDVO.life. We also offer these services for companies and corporations, that they can build out a wellness program for their employees, right? So when an employee is dealing with death, dying, or incapacitation, it affects the employer. It affects their absenteeism and turnover, mental health issues. So we're here to support the employers as well as the employees and the individuals. You can also find me at myfinalplaybook.com. And with that, this has just been such an opportunity. Lindsay, thank you so much.

Thank you so much. And we will throw all the info down below so everyone can find you. And thanks everyone for listening. All right, that's a wrap for today. Until next time, remember: you're not alone. Take things one step at a time, stay centered, and trust your calmness. See you next time on LT CareNav's Care Compass.