When Liz Weston’s dad was on life support, the advanced care directive that would have allowed his children to carry out his wishes was incomplete, creating a potential cost of tens of thousands of dollars. Liz shares her story, a long with advice to protect your family’s healthcare wishes, and finances.
Liz’ Money Story:
Liz Weston:
my father was visiting his sister in Florida. My father lived in Washington state, and he had a massive stroke. Now, one of the things about Florida is that they're really good at keeping people alive when they have massive strokes, given their population.
Liz Weston:
So he survived it, but he was incapacitated. He didn't know where he was. He didn't know where he was in time. It was grim. And he had an Advanced Care Directive, which for people who don't know, that is the paperwork that basically named somebody else to make decisions for you if you can't make decisions for yourself regarding your healthcare.
Liz Weston:
So he had that document, but the only person he named was his spouse. And his wife was not only older than he was, but after a few weeks, she went home to Australia. That's where she was from. So my father was left in a nursing home, across the continent from his actual home, and we had no way to make decisions for him.
Bobbi Rebell:
So your father was living in Australia?
Liz Weston:
Well, half of the year. Half the year, he's in Australia, half the year, he was when he was in Washington. So he's stranded. And the thing was to get control, to be able to make decisions for him, we would have had to start conservatorships in two states. It would have to been his state, Washington state, and Florida. And when you figure you're putting down $10,000, just to start those proceedings, it was a freaking nightmare.
Bobbi Rebell:
So what happened?
Liz Weston:
Well, eventually, she did come back, and a nurse at his facility all but bullied her into signing a do not resuscitate order, because that was the problem, that he kept having crises. They kept taking him back to the hospital. They'd fix him, they'd send them back. So they were just keeping him alive for no good reason, with terrible quality of life. And that's why he had done the Advanced Care Directive in the first place. He watched my mother die of cancer. He knew how awful that could be when you're like lingering in that state. But because he named somebody who was older than he was and wasn't around and there was no backup, he was stuck in that limbo for four months. So it was grueling. It was awful.
Bobbi Rebell:
And for you and your siblings, what had you talked about in advance of this? Were you aware that this was a missing piece to the puzzle ahead of time, or this just all happened all at once?
Liz Weston:
It happened pretty quickly. I was just relieved at first, that there was any kind of paperwork, because I wasn't sure he had taken care of that. He was very private. He didn't want to be asked about his financial situation. I knew that they had done some estate planning because I'd seen my mother's estate plan, but I had no idea with him. So the fact that the document was even there was pretty helpful, but it would have been much more helpful if there'd been any kind of backup.
“You want to make sure that the person representing you is a honey badger.. It’s somebody that is going to be able to push back against the medical industrial complex and make sure that you get what you want.”
Liz’s Money Lesson:
Bobbi Rebell:
So what is the lesson for our listeners from this? What could be done in this situation? What if, for example, his wife had not come back? I mean, where does that leave you?
Liz Weston:
Yeah, we would have been in court. We would have been spending tens of thousands of dollars, trying to rest control, so that we could do what he wanted done.
Bobbi Rebell:
Right. And you're spending money for lawyers when you're not really fighting ... You're just fighting paperwork. No one's actually telling you that they don't believe this is what your father wanted. No one's actually against you. You're just in court because of the way the law is written.
Liz Weston:
Exactly. And we didn't know that there wouldn't be a court battle. I mean, she could have come back at any time and tried to fight. Who knows? But it was just a tense and really, really uncomfortable situation for everybody involved.
Bobbi Rebell:
How much could it have cost you? You said 10 to begin with in each state.
Liz Weston:
Yeah. I really don't know. I know these battles have gone to six figures, but I don't know.
Bobbi Rebell:
And that's not to mention the fact that there's nursing care going on during this time.
Liz Weston:
Yeah. And there's where we lucked-out, in a weird way, is because he kept being sent back to the hospital, the Medicare limits reset. And if you don't know, Medicare typically doesn't cover custodial care, which is mostly what he needed, except for right after a hospital visit, there's a limited time when they do. So we kind of lurched from one of those to the next. But at some point, if he continued to live, it would have been on us, all the custodial care, and that is incredibly expensive.
Bobbi Rebell:
So we digressed a bit. Let's get back to what the lesson is and how can people ... especially, if you have a relative that is very private, what options do you have in terms of maybe even just educating yourself to know things like that, the Medicare situation?
Liz Weston:
Obviously, we want to first take care of ourselves. So if you don't have this particular document, go to prepareforyourcare.org. So it's prepareforyourcare.org. They have forms for every single state, instructions on how to do this. That's the easiest way.
Liz Weston:
There's all kinds of questions you can answer about what you want and what you don't want. But the most important thing is to name the right people to make those decisions. You can skip all the questions if you want, if you put the right person in charge. So a lot of us have our spouses, but you definitely should have backup, one backup, maybe two. Ideally, those people will be younger than you, so that they are likely to survive you.
Liz Weston:
The problem with having your spouse is that the spouse might be involved in the same accident that takes you out, or that makes you incapacitated. So that's always a risk. That's another reason why you want to have a backup. And I use the phrase ... You want to make sure that the person representing you as a honey badger. And by that, I mean, somebody who's really willing to get up in the face of the medical care system to make sure your wishes are carried out. It can't be their wishes. It's got to be your wishes. So it's somebody that's going to be able to push back against the medical industrial complex and make sure that you get what you wanted. And that takes a little bit of feistiness.
Bobbi Rebell:
And what about ... are there ways to deal with elderly people that just refuse to speak about it? Are there ways to approach them?
Liz Weston:
Yes. And especially now with COVID-19 going on and people having these horror stories of getting sent off to the hospitals and stuck on ventilators when they don't want to be. I always like to come to discussions like this, having my own ducks in a row. So that's why I suggest, go take care of this first, and then you can bring it up with your elderly parent or the person that you're concerned about. And just talk about that, how you've heard of these horror stories of people getting interventions that they didn't want, or being stuck on life support. And you would like to know what they want. You want to make sure that their wishes are carried out. And do you have an Advanced Care Directive? Do you have somebody that's in paper, that you've named on paper and that you've executed that people particularly document to make these decisions for you?
Liz Weston:
And a lot of people, once you bring it up that way, they're willing to talk about it. You're not pushing and asking about your inheritance. You're not talking about a bunch of other things. This is a real quality of life issue. And I think older people are going to be willing to talk about it. It's not the same as talking about death, interestingly. It's something that's talking about, okay, the quality of life that you are experienced. I think people are more likely to talk about that than maybe death, although there are going to be the death deniers who think they're going to live forever. I don't know what to do about those.
“If there is something difficult you need to do with your money, something you have been putting off make an appointment to deal with it. It can be months from now but put it on your calendar and treat it like a real appointment.”
Liz’s Money Tip:
Liz Weston:
If there's something difficult you need to do with your money, something that you've been putting off, make an appointment to deal with it. It can be months from now, but put it on your calendar and treat it like a real appointment. And there's two benefits to that. One, is that you stop that nagging in your head that's telling you, you should do this. Because even if you're ignoring it, it's eating at you. And you know that, Bobbi, just as well as I do.
Bobbi Rebell:
So well.
Liz Weston:
But then it's something that's on your calendar. And if you treat it as, "Okay, this is the time I'm going to do that." You can make progress on any task, no matter how difficult it might be or how ... It might take more than one appointment, but at least you're getting started.
Bobbi Rebell:
You get that reminder. So give us an example of something that you've done, that, that worked for.
Liz Weston:
Thinking about changing the guardian for my daughter is something that my husband and I talked about, we worked out. Because as your kids get older, their needs change. When they're younger, you can ship them off wherever. When they're older, you want them to be able to finish school where they are. So the person that's taking care of them could change.
Liz Weston:
So we knew that we wanted to do this, and then I completely dropped the ball. All I needed to do is call an estate planning attorney, but I kept putting it off and kept putting it off. [inaudible 00:12:30] weird. So I finally just put a day on my calendar where I'm going to call Bert, our estate planning attorney, and get this ball rolling. And it was there. I took care of it. Boom. It was done.
Bobbi Rebell:
And it's a two-minute call, but we have that, where we kind of know in our head, we have all of these two-minute phone calls to make. And I tend to just make lists, and then I push it forward to the next day. But I like the idea of the appointments, especially if it's something that you know can wait. Maybe you're going to sign up for something, but you want to wait and see for whatever reason, if it melds with your schedule, but you also don't want to forget.
Liz Weston:
Yes. Exactly.
“Whatever method you can stick with is the right method”
Bobbi’s Financial Grownup Tips:
Financial Grownup Tip #1:
Nothing is forever and that includes your estate and health care planning documents. I myself realize I might need to update mine after talking with Liz. Estate planning isn’t just about money- more important frankly are things like the advanced care directive Liz talked about. Do the paperwork and make sure you also discuss it with anyone that could be involved should something happen. I’m going to use Liz’ appointment money tip and put an appointment on my calendar to make sure this gets done.
Financial Grownup Tip #2:
The coronavirus has taken it’s toll on keeping up with our support system- friends and family we used to just see on a regular basis.. Use Liz’s appointment technique to make a regular catch up time with your friends and family. So for example, you could choose 8am on Tuesday’s and Thursdays and create an open slot and every week book a half hour catch up call with a different friend during those times. I find if you offer a specific time- rather than trading ideas of times back and forth, it is easier to actually make it happen.
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