Take Care

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0:39We truly have to ask ourselves, like, why is it noteworthy? And even change you. I literally feel like I'm a different person. Yes. Do you feel that way? Ideas worth spreading. From TED and NPR. I'm Manoush Zomorodi. and I want to give you a little tour through a very special village in the Netherlands. You enter and you come in and you're on the center square. To your right is a theater with red curtains and music and a place to have coffee or a glass of wine. This is Ivan van Ammerhangen. When you go to the left, you enter the shopping mall. The shopping mall has a pub with Dutch music and beer and wine and fun.

1:35And that's every evening. Then we come into a small neighborhood where several houses are for people. There are gardens. You can walk around in the paths. And every place has its own feel. Everywhere you can meet people, the people that work there, the people that live there, the people that visit. It's a wonderful place to live. And if you're thinking, this village sounds pretty normal. Well, that's exactly what makes it special. It's actually a place for people with dementia to live regular lives. It's called the Hogevik. And the Hogeveg is actually a nursing home, but it feels and looks like a nice place to live.

2:23The Hogeveg started out as a typical hospital-like nursing home back in 1993. Yes, well, the Netherlands actually was one of the first countries that had nursing homes. I didn't know that. Yeah. And we were one of the first nursing homes in the country. And so we had a very old building and it was built as a hospital and not as a home where you live. And at some point we said, well, we have to do something about this because we don't want our own parents to live here should they have dementia. We don't want to live here ourselves. What was wrong with it, though? I mean, you seem like lovely people and, you know, I'm sure the level of care you were providing was very good.

3:13Yes, but what we were offering was a hospital-like environment. And nobody wants to live in a hospital. It was a ward. All they had was a bed and a night table. And that was it. And these people were always looking for, how do I get home? This is not my home. And we said, for these people, it's not possible anymore to go home. So we should offer them a place where they feel at home. A place where they can have their own life.

3:53Feeling at home, feeling safe, comfortable, cozy. That's what we all hope for in our later years. And for many of us, there comes a time when we need to be looked after, and a time when our loved ones need us to look after them. But how do we know if we're truly offering what's best? Is there a right and wrong way to be a caretaker? Today on the show, we'll explore the ways that we tend to our parents, our children, and ourselves, and how we can do a better job asking for support from others when we truly need it. So back to Ivan van Amelgangen and dementia care. Over the course of her career, she's seen why dementia is a particularly difficult condition, both for the people experiencing it and the people providing their care.

4:47Dementia hits the brain. What we see with people that have to live with dementia is that parts of their memories disappear. They forget how to do things. They forget parts of their life. Actually, I remember my grandmother who also had dementia. And she lived 40 years in that house. It was a big house. But then the phone rang and at that time we had phones on the wall. And she couldn't find the phone. She knew that there was a phone ringing, but she couldn't find the phone. And that's what's happening with people with dementia. We see that people mostly know what was happening in the past. They go back in time.

5:30They understand the past, and they don't understand the future and the day of today. Here's Yvonne van Ammerangen on the TED stage. These people wanted to have a life. and our help to deal with that dementia. These people wanted to live in a normal house, not in a ward. They wanted to have a normal household where they would smell their dinner on the stove in the kitchen or be free to go to the kitchen and grab something to eat or drink. That's what these people needed and that's what we should organize for them. And we said, we should organize this like at home, so they wouldn't live with a group of 15 or 20 or 30 like in a ward.

6:24No, a small group of people, six or seven, family-like, like living with friends. What we saw later when we started with those small groups of people living a normal life, we saw that people at 5 o 'clock would gather around the table while the professional was peeling the potatoes and cleaning the vegetables and asking people how should I cook this or this what did you do with tomato soup, things like that and then they would all have a drink and it was totally relaxed we often had people from all over the world that worked in nursing homes come and visit us and we would come in and say hello and leave again.

7:11And they would say, what's happening here? Because in our nursing home at five o 'clock, it's disaster. Everybody is confused. And here we see people sitting around the table having a relaxed talk with others and watching what's happening and waiting for dinner to come. There's a peacefulness. A peacefulness, yes. And you talk about their living setup. You develop something that you call lifestyle groups. These are households where people who share similar interests live together. Why is that so important? Well, like my mother, cultural lifestyle. She used to travel a lot with my father. They were interested in art, in music.

7:59Household was not important. You don't need to vacuum every day and things like that. They liked to not eat very traditional Dutch food, but try Chinese and Thai and French and things like that. So that was my mother. other group is for instance the homemakers group there's people that where the household is very important you cannot have your first cup of coffee in the morning if you didn't do the dishes the house isn't clean you should vacuum every day and when it's in order when you have your done your housekeeping and your food is on the stove you can have coffee with the neighbors this just it's interesting the more you talk about this the more it makes me think that taking care of someone isn't just making them feel as we described peaceful calm understanding where you are having your daily habits but it's about holding on to your identity it's about not feeling lost in yourself yeah it's respecting the person it's total respect for the person you are And that you have a dementia is something that needs care, but it's not important for your life.

9:14It shouldn't be important for your life. Your life is something else. Your life is belonging to a group, having friends, going to the pub or a theater, is living, living the life you want. That's what people want. Recognizing yourself as well. Yes, yes. You've had people from all over the world come to see what you're trying to do at the Hogeweg. Has your model spread in some way? Well, the first one that started, and it's wonderful, is in New Zealand. And it's in Werahora. I cannot pronounce it like you can't pronounce Hogeweg. Werahora, it's a very touristical place. It's known for the wonderful lake.

10:02And on the lake, on the shores of the lake, they have built this small dementia village. It's wonderful. They're working on it in Australia, in Canada. In France, they already worked on it and have it. Italy, all kinds of places. It's mainly Europe, Asia, Canada, United States. I mean, you're mentioning countries that have very strong social services, healthcare is provided for all. The United States, I mean, I hear of assisted living places, but those are some of the most expensive places to stay. And my mother went to look at them and she said the waitlist is five years long. Well, that's because the United States have a very different way of financing care.

10:55all dutch people that have an advanced dementia have the right to go into a nursing home and it's paid for and you pay back to the state an amount according to your income but it's affordable for everybody in the whole dutch nursing home system and but that's politics if it's possible to have nursing home care in your country you can work with it because most of what we're doing is not spending more money. It's about thinking differently. The Hogewijk has become a place where people with very advanced dementia can live, have freedom and safety because the professionals working there and the volunteers working there know how to deal with dementia.

11:48And that means that the management has to provide everything those people need to do their work. It needs a management that dares to do this, to do things differently than what we always have done in the traditional nursing home. We see that it works. We think this can be done everywhere because it has to do with thinking different and looking at that person in front of you and looking at what does this person need now. And it's about a smile. It's about how you act. And that costs nothing. And there's something else. It's about making choices. It's about making choices what you spend your money on.

12:38I always say, red curtains are as expensive as gray ones. It's possible everywhere. Thank you.

12:56that's Yvonne von Amelhangen she's a founder of the Hokeve and worked in dementia care for almost 40 years she's now retired herself you can see her full talk at ted.com on the show today take care I'm Manoush Zomorodi and you're listening to the TED Radio Hour from NPR stay with us

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14:52All the professionals you need to reach in one place. Get a$250 credit on your campaign so you can try it yourself. Just go to linkedin.com slash results. That's linkedin.com slash results. Terms and conditions apply. Only on LinkedIn ads. It's the TED Radio Hour from NPR. I'm Manoush Zomorodi. On today's show, take care. When I was diagnosed with cervical cancer, I was in a stuck place in the American health insurance system. This is Diana Adams. Back then, Diana was 20-something, broke, and trying to start a law practice. I'd been duped into buying a very sort of limited freelancer's health insurance.

15:40And once they determined this is cervical cancer and you actually need surgery, that's when I was told we can't treat you anymore because your health insurance actually doesn't cover that. So while emergency counted as getting in a car accident, it didn't count as cancer. And so I couldn't buy health insurance on the open market with a cancer diagnosis and I couldn't get on cancer services, Medicaid. And a lot of people in that situation just die. So I really felt like I was stuck and was just completely overwhelmed and terrified. And that could have been where Diana's story ended. But my chosen family really stepped up for me.

16:24My girlfriend helped me pick apart, okay, what are the specific needs that I have right now? And organized them into a schedule. And every day for a few months, somebody showed up to bring me food and somebody else showed up to sit with me while I'm making terrible phone calls all day long about health coverage and just breathe with me and keep me focused and grounded. Friends tracked down the best oncologists. Others helped Diana win an appeal to get on Medicaid. And that's just incredible. Just absolutely astonishing. The way that people showed up for me. And Diana got better. But then they got mad.

17:02I felt somewhat outraged that the kinds of relationships I had with the people who really supported me and saved my life were not something that was legally recognized. And I couldn't have gotten on the health insurance of those friends because we weren't romantic partners. And those kinds of close friend relationships don't get the kind of priority as romantic relationships do. Right. Right? I mean, I could marry some guy that I met on Match.com two weeks ago, and he could get on my health insurance, but my best friend of 20 years can't. Why? So you decided to focus your law practice on exactly this.

17:39Absolutely. And I really wanted other people to be able to formalize those kinds of relationships and try to make sure that there are fewer people who fall through the cracks like I could have. We can't keep divvying out the benefits that we give to people just through the institution of marriage, for example, because that doesn't account for the actual reality of the many people that need and deserve support to. Here's Diana Adams on the TED stage. The nuclear family has been the basis for our cultural stories and our laws. But only about half of U.S. adults are married. Fewer every year. 40 % of U.S.

18:20adults don't live with a romantic partner at all. As of 2013, less than half of U.S. children had two married heterosexual parents in their first marriage. The majority of us are not in a nuclear family with a spouse and kids. Yet somehow, we treat this majority of people like social failures. What's worse? Our laws treat unmarried people as lesser citizens. Marriage comes with over 1 ,000 rights and benefits under federal law. These include the ability to get your spouse citizenship, share health insurance, get better tax rates, and inherit tax-free at death, and more. Part of the winning argument for same-sex marriage was that we shouldn't deprive gay couples of all of these essential benefits.

19:11But I ask you, why should anyone be denied benefits because they're in a romantic relationship of which some people disapprove. Or because they're single. Thank you. Or because they're basing family on something other than a romantic relationship, like co-parenting a child. Our laws should move away from the idea that there's one ideal family form and value all families as they exist. For nearly 15 years, with my law firm for LGBTQ and non-nuclear families, I've supported same-sex couples. But also the many family forms beyond marriage. Like platonic partners, who are raising a child together or sharing finances without a romantic relationship.

19:58Or grandparents, who are raising their grandchildren. Or a lesbian couple co-parenting with a male friend. Or polyamorous partners, who might be in a committed relationship of three or four. And it is my core belief that no matter how you form family, actively discussing how we intend to live together is the best thing we can do to strengthen our own personal relationships. So Diana, as you point out, these days families come in all kinds of shapes and sizes. But how are we at this point where the traditional marriage contract remains the gold legal standard, at least here in the U.S.? We really get an emphasis on legal marriage in the 20th century, especially as we got more toward the Industrial Revolution.

20:45In 1850, many Americans were living in extended nuclear family. And something like three quarters of people who are 65 and older lived with their adult children and grandkids and helped out with the grandkids. So this idea of the nuclear family, I think we have an idea that it's, quote, traditional and it's been that way forever. And it's maybe the way things were intended. it's actually a relatively new invention. And it's really an invention of factors of capitalism, for example, of organizing workers. At the time in the 1950s was a brief blip in history when a man, even without a college degree, might be able to earn enough to support a wife and two kids and buy a house.

21:22That was also to prevent out-of-wedlock births because the U.S. has really resisted having the kind of robust social welfare state that's enjoyed by others in Europe where marriage is actually much less emphasized. There hasn't been as much of a same-sex marriage movement because people don't need to get married to get health insurance and don't need to get married to feel like they're going to get support for their kids if they're a single mom, because the state will provide that support. But instead, in the U.S., it was really partly a way to organize, okay, who is the father of which children so that we know, so that he can pay for this, rather than the government?

21:57And this nuclear family was really only in a majority in the 1950s and 60s. But that doesn't necessarily mean that those are good bases for how we need to form family today. When we embrace the idea of chosen family, our own free will is more important than biological connection. We can choose to create family relationships with the people who provide us with the meaningful support that we need and deserve. Same-sex parenting has also advanced the concept of family beyond biology, because in a same-sex couple, only one parent's providing the sperm or the egg. In my family-building legal work with these families, I facilitate discussions to make sure that everyone's intentions are aligned before designing that legal agreement.

22:40For example, I'll often work with a female same-sex couple who has a male friend who wants to help them become parents. So I'll facilitate discussions to make sure they're all clear on whether he's going to be a co-parent or a sperm donor and design a legal agreement either way. Without that, I've seen too many situations of ambiguity where mom calls him a dad when she needs child care help, but a donor when it comes time to make a big decision she doesn't want his input on. He calls himself dad when the baby's adorable at the park, but feels more like a donor when the school bill comes, you know?

23:14When we're designing our own families, we need clear written agreements, especially if children are involved. It sounds like you are coaching people who are in less traditional family arrangements to get very clear on what their legal obligations are to each other. That to be successful, you're saying they need to be clear-eyed about what the future might hold and their obligations. Absolutely. And so I would have a clear written agreement that would be just as valid if this is a platonic co-parent or if this was a guy who got you accidentally pregnant or if this is your ex-husband. So write down an agreement that makes it clear, OK, he agrees that he's going to make a 50 percent contribution to child expenses.

23:59But if our incomes change drastically, we can check in about that. And maybe he pays 70 percent or 30 percent based on our respective incomes in that calendar year if needed. Because as a family lawyer, we've seen too many situations of words like, you know, he'll contribute in a reasonable way or he'll provide child care as mom finds appropriate that can lead to misunderstandings. And so I try to get people to really open up about what are your real fears here and what are your real expectations? Tell me what an average week looks like. Tell me what an average year looks like. Does mom have a hidden expectation that the sperm donor will always come to the kid's birthday party?

24:38Because we're saying he doesn't have any rights or obligations as a parent, but are you actually really kind of secretly hoping that he's going to be in a special relationship? Oh, but maybe she doesn't even know that that's what she wants. And I think you're right. People sometimes don't even know. I ask a lot of the questions that I've seen lead to agreements falling apart. I have found in my work that these kinds of discussions are much more powerful for preventing future disputes than any written contract can be. We need to have these conversations. Legal contracts are sometimes written to avoid looking eye to eye and coming to agreement, but family contracts should only be written after you've done that.

25:17When I design relationships for polyamorous triads of three or quads of four, I sometimes use existing legal structures like trusts or LLCs that allow you to share property and finances without a question as to your relationship. So for example, if I've got a polyamorous triad, Ayesha, Susan, and Linda, I can set up an LLC for them so that they can co-own real estate properties, pay taxes together, purchase a common health insurance, and have clear exit strategies if they wish. Thank you. And if people trust each other enough to pool their financial fortune and want to pay taxes together, it shouldn't matter whether they're business partners, siblings, or romantic partners.

26:01All of those families are valid. Domestic partnerships have been used for 30 years by same-sex couples, but also by best friends and siblings. doing so as domestic partners allows you to share your health insurance to visit each other in the hospital and across borders in a pandemic like spouses but unlike spouses you don't become a social welfare state of two which can be a good thing i had a client who had a severely disabled sister by becoming domestic partners she was able to put her sister on her excellent health insurance coverage. Why would a sister be any less worthy of that than a boyfriend?

26:40I think we cut people off from other means of support when we have an assumption that the romantic relationship is the person who, for example, shares your health insurance. And then also there are situations of not being able to visit each other in the hospital or not being able to make medical decisions. It's been something terrifying for some people in my community who are lesbian, gay, bisexual, transgender. The idea that their parents who've ostracized them or even been abusive toward them, that that would be the person that would show up and make medical decisions if they got into an accident.

27:15Somebody that doesn't respect that they're trans or somebody who made their life miserable is the last person they actually would want to show up and make medical decisions. but didn't feel like they had an avenue to create those other kinds of relationships. There are so many reasons why people do or don't want to be in a relationship or be, quote unquote, family. So many different scenarios. One story that I hear regularly is about people who are married but maybe only stay married because of their health care, health insurance. Do you have clients like that too? So I've worked with a situation in which a man was able to stay legally married to a disabled wife so that he could keep taking care of her and providing her with benefits through his military career as well as his good health insurance.

28:07but in which he was able to then also make family agreements and legal agreements for his new female partner and the child they have together and sat down with all three adults to make a plan about what would feel right for them. So that's the kind of example of the complicated families that I serve, which aren't necessarily LGBTQ families at all. I mean, it sounds like you're a chef who's being given a random batch of ingredients and you're like, hmm, what am I going to make with these ingredients? Whereas, sorry, I don't know where I'm getting this metaphor, but it sounds to me like you want to get to a point where you're not having to figure it out fresh every single time, but that there would be laws that cover all these less traditional family units, that there would be sort of structure and tools for you to use and you wouldn't have to be quite so creative.

29:03Absolutely. You're absolutely right, Manoush, that it feels like I'm on some sort of Iron Chef challenge where I've got a certain set of ingredients and a certain desired outcome, and I have to kind of mash them together in something bizarre and hope it works out. But ultimately, I always have to tell them there's nothing that we can do that's going to get you all of those thousand benefits and rights of marriage. You're just not going to be able to have the right to cross a border in a pandemic. You're not going to have the ability to inherit tax-free. You're always going to be disadvantaged in these large ways.