Putting a ‘Spotlight on Care’: Caregivers Help Other Caregivers Through Podcast Series

Transcript

Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us. 

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today I'm joined by the co-hosts of the podcast Spotlight on Care, Virginia Naeve and Steve O'Leary. Both Virginia and Steve are former caregivers to individuals diagnosed with Alzheimer's disease, with Virginia taking care of her mother from 2005 to 2013 and Steve taking care of his wife from 2010 to 2017. In 2021, Virginia and Steve started the Spotlight on Care podcast with the University of California, Irvine's Institute for Memory Impairments and Neurological Disorders, known as MIND, as part of their library of Alzheimer's and dementia-related content, called MINDcast, to share their caregiving knowledge with others. Virginia and Steve join us today to discuss their journeys as caregivers, strategies they've learned over the years, and more. Virginia and Steve, welcome to Dementia Matters.

Virginia Naeve: Thank you very much, Nate.

Steve O’Leary: Thanks, Nate. It's great to be with you.

Chin: Can you share a bit about your experience as caregivers? I'm going to start with you, Virginia.

Naeve: Well, my journey was completely a surprise to me. I have to start by saying I knew absolutely nothing about Alzheimer's or dementia. In 2005, there wasn't much out there. There really wasn’t. It started with my dad, who was a few days short of retiring as an L.A. Superior Court judge. He passed away suddenly from a heart attack. Mom found herself completely in shock. All of us were in shock. Just planning dad's funeral service, I kept noticing mom was not keeping any train of thought. She was repeating questions–strangely I thought–and we all chalked it up to grief. She’s grieving. At the funeral service, that was my first big jolt. She pointed at my mother-in-law, whom she knew, and said, "I know I should know you." Bob and I looked at each other like, huh? Yeah, you know her. That was my first real jolt that something wasn't quite right. She was alone now without dad. She was a 45-minute drive from me. I still had two kids in high school and the journey began. Mom was by herself and I'd go up there and things were not right. That's how my journey began. I didn't know what to do with that. I just had to learn as I went and it was a shock.

Chin: Well first of all, thank you for sharing that, Virginia. That is hard. You feel lost, I imagine.

Naeve: Yeah. 

Chin: You must have reached out to someone at some point. Did you reach out for help?

Naeve: Not yet. Mom's best friend was living right across the street. Her name was Betty. Betty would call me and she would say, "The other night we had bridge club and we all bring food, and your mom brought a bowl of peanuts." That was very odd for her to do, something like that. I talked to Betty a few times, but she said, "I was in the car with your mom the other day and I wasn't sure I was going to make it home." Betty and I were kind of touching bases, but I thought she was grieving. I really didn't know.

Chin: Was there a point where you felt like, there’s clearly something wrong. I need to have either a diagnosis or a team, or you need to have something formalized?

Naeve: I took her to her GP, and talk about unhelpful. The two of us were sitting in his office and he said, "How are you, Helen?" She said, "Fine, how are you?" (Laughs) Even the receptionist there—they were getting ready to retire—he was older and must have seen this before. He was acting like there was probably nothing wrong but told me to keep an eye on it. That was my first experience. A formal appointment with a neurologist was almost a year later. That’s how clueless I was. We found a neurologist after we had moved her to assisted living at almost a year. That was really horrible planning. It just wasn’t good. I didn’t get a good answer from him either. In 2005–I don’t know–in 2006, there weren’t a lot of people out there really in the know, I don’t think. I didn't find them.

Chin: Virginia, it takes a couple of years, but you were a caregiver from 2005 to 2013. At some point, there's a diagnosis. How does it change for you after the diagnosis? What does caregiving look like in the middle and at the end of this process?

Naeve: I realized that we needed to get mom into a place where she had people looking after her because I was still raising two kids. I had a 45-minute drive to her house. She was taking pills inappropriately. I looked in her refrigerator. There wasn't any food. There were Lean Cuisines in the freezer. Things were not going well in her home. Once I moved her—that was another long story—but once we got her into assisted living, that's when I thought, I really need to find a doctor who can tell us what's going on. For three years, almost four, they kept saying, "That’s MCI." By the end of that period, I had read some things and I thought, this isn't MCI. This is Alzheimer's. I was not getting much help, and I wasn't good at finding it I guess.

Chin: You were, by definition, the sandwich generation. You are the caregiver for your children. You are the caregiver for your mother. I missed this in the beginning. Were there other family members that helped?

Naeve: I have a very helpful, wonderful husband and two great brothers in Southern California, but I wanted to be the main caregiver. I wanted to have some kind of leadership in this process. They were wonderful. That doesn't always happen. I've talked to a lot of people who've had more trouble with their siblings than the person with Alzheimer's. I had no trouble with either of them. I would say jump, and they would ask how high. That was good.

Chin: So you did have that support personally, but you didn't get the diagnosis or professional support.

Naeve: I didn't.

Chin: Yeah.

Naeve: I really didn't. Sometimes I still look at the building where I used to take mom for a doctor's appointment. I gotta say, he was a nice physician but he would look at her and say, "How are you feeling?" Like, we're not in here to say "Fine." We have this issue, this issue, and she's sitting right there. What do you do with that? I'm hoping that's changed. I used to get the hang of writing issues down and handing them to the nurse before we went in and saying, "Please read this before the doctor comes in." They got the hang of that and so did I, but I wasn't really very good at finding professional help.

Chin: I know we're going to talk about the podcast and your motivations to share your knowledge as a caregiver. I can already see where some of this is coming from, Virginia. I'm going to transition to you, Steve, because it's a different experience. Why don't we start with you as a caregiver? How did it begin? Describe your support system and how it changed as the disease changed for your wife.

O’Leary: I was probably kind of the opposite of Virginia. We laugh a lot about our similarities, and we also had different experiences. Patty and I worked together. She was the controller in our company, which was an advertising agency in Orange County. We had been working together. She was now reporting to a CFO. We had gotten a little bit bigger than just a mom-and-pop operation. She was in charge of billing, HR, and all sorts of things. I still have anxiety about this. She came to me a couple of times and said, "We need more help." I’m going,, “We've lost a few accounts so we don't have the same number of people. You should talk to John,” her boss. Of course, that didn’t happen. I realized the disease was starting to happen. She was having to deal with numbers. Then lo and behold, my CFO and my partner came to me and said, "We got a problem. Patty just can't keep up. She's making big mistakes, and mistakes on HR and things like that." I kind of now know but, like Virginia, I was running hard. We were still running a company. Patty was 59, I was 59 as well. We were still in the go-go times. Pretty quickly after literally firing her from her job and dealing with her anger and frustration with that, I got some good advice—literally from my daughter. There had been some history in the family of dementia. We called it ,back in those days, senility. We literally ended up at UCLA and went through a testing program up there and she got diagnosed with MCI. Right away, Patty jumped into the longitudinal study. From the whole time she had this disease until the end, a piece of her was always thinking about what she could do for others. I remember many stories about her attitude. There were a lot of other times it wasn’t so great, but many times where it was. That progressed. I think we had a good situation. I always remember three or four years before that occurring, we were in for a normal checkup and I went with her. I said, “I’m experiencing some concerns. Is this aging?”. He said, "We have this test." It was the five question test. We all laugh about it now. He gives her these questions, and I go “What? What is that?! It’s like, ridiculous!” He said “Well, there’s no problem,” and I went “Yeah, that’s no good.” Anyway, long and short of it, we were fortunate to get involved with a strong cognitive evaluation up at UCLA. I have to say that UCI is a lot better than UCLA, but that’s a little prejudicial. (laughs) When you are part of a program and you have your loved one admitting and agreeing to cognitive evaluations and then the MRIs. Patty did spinal taps. She was in. Eventually, she donated her brain. From the very beginning, we were getting good advice. We knew what was happening and we knew where things were going. Maybe made my journey and her journey a little easier, so totally the opposite. Of course, once I found out about it, I was doing what Virginia did. I started reading. Then there was the whole story about my involvement with UCI MIND, which of course expanded things. Eventually, it became Alzheimer's and then it became community. My decision about the community is worth mentioning a little bit. I think it’s a really, really difficult decision for a loved one, maybe even harder for someone you are married to, that’s a spouse, because you feel a huge level of guilt. Can't I do it on my own? Can't she stay at home? What about all these things? Ultimately, it came down to was she gonna get better care in a community than I could give her, even with pretty close to 24/7 service at home. I think that decision was the best decision I ever made, but I still had a lot of guilt about it.

Chin: Thank you for sharing that, Steve. That is actually going to be my next question, is the differences between experiences because, interestingly, you both had different experiences but there are some similarities. One of the things I hear is that it’s this initial response to noticing the change. Virginia, for you, it was thinking, “Oh no, these symptoms are related to grief, the loss of a loved one.” For Steve, it was, “Oh, we are really busy. This is the go-go times. We are busy with work. It’s just stress.” Ultimately, that led to this diagnosis of MCI, which for you, Steve, made sense. It was the process. Virginia, for you, it felt like, no, this is more than MCI. We have progressed past this. Then that is where the departures happened. I thank you both for sharing that experience because, you know, we have been told this many times. You have met someone with thinking change. It is only one. That is just one. Everyone's experience is different, as both of you guys have said. But there are lessons that we can share with each other, which is of course why you guys have your podcast and why we are doing this podcast. Before we get to your podcast and what you guys have learned from it, as caregivers for a parent and a partner respectively, Virginiaand Steve, can you say what has been different about your two caregiving experiences? Were there specific challenges—Steve's mentioned one—that you might have that the other might not necessarily have? If you guys could talk about that–Steve, you started by talking about the guilt of having your wife in a care home or a care facility. Virginia, is there something else that you could speak to?

Naeve: Yeah, totally. It was the issue of role reversal for me because my mom was my mom. I was used to going to her for issues, problem solving, life decisions. Now with this role reversal, it was like I was being her parent. She was like becoming a child. I wish I had gotten used to that concept earlier than I did. It took me a while. But when things were really starting to roll, I realized that I needed to get a grip on, for example, her finances. I grew up thinking my parents' finances are none of my business. My dad made good money. I knew that we had vacations that a lot of other people didn’t, but I couldn’t tell you how much my dad was earning. It was not my business. I found myself sneaking the checkbook out of her purse to see what she was writing checks for. I found a few that were not good. $2,000 to a gardener for a sprinkler change. I just thought, okay, I have got to get a grip on the finances. Banking, that includes banking. My name had to go on her account. I didn't even know where her accounts were. I was being a parent to her with food issues. What do you have for dinner, mom? Then I would look in her refrigerator after going up, and there were not good signs. This was not going well. The issue of taking her car away. It is not an easy issue for either taking care of a parent or a spouse. That is a horrible issue, but it has to be done. I felt like, as her child, here I was removing her ability to drive. I did not want to be her parent. On a lot of levels, she knew it was kind of weird that I was stepping in with these issues. She was good-natured about most of it. She really and truly was, but it felt wrong. Then later, when the symptoms become much more pronounced, things like showering—I would imagine it was easier for someone like Steve taking care of a spouse to put her in the shower. For me, putting my mother in a shower? That is why the assisted living thing worked out so well, because issues like that—later, incontinence happens. My caregivers, they were questioning why I always left the room when they changed her incontinence products. I just could not do it as her daughter. To me, it was just wrong. There are definitely differences. A lot of issues are the same. A lot of issues are the same, but there are angles to taking care of a parent that are really tough.

Chin: Before I move to you, Steve—Virginia, what do you say to families or to people in this situation where they–not the bathing one, because I do think that is a very personal experience and everyone is going to feel differently. But that dynamic, that switch, particularly when it comes to decisions that are financial or driving or things around even just safety—you can’t cook anymore, or I am going to need to be managing your medications. You know, as a clinician, I see a lot of that resistance and I see a lot of children one way or the other. Sometimes they are too forceful and sometimes they are too passive. What do you say to the person in that spot, where they do not want to because they feel uncomfortable but there is no one else? What would you say to that person?

Naeve: Well, you just have to know you are doing what is best for them. That is how you take care of them, even if it feels wrong. We can get into the subject of joining their world a little bit later. That is something I had to learn. It took me a while. But whatever they think is going on, you just go along with it. Keep the peace and just realize that it’s their safety. It is their safety. I have a friend who put an air tag in her husband's bicycle seat and she found him three miles away on his bike. He's at the stage of Alzheimer's where that was unsafe. Taking away the driver's license, they aren't safe. I think you just have to know that you're doing the right thing, even if it feels wrong.

Chin: Yeah, thank you, Virginia. Steve, you already shared something very personal, the guilt of having your wife in assisted living. After hearing what Virginia was talking about, did that prompt another experience that you feel like is different as the spouse, the partner of someone living with cognitive change?

O'Leary: Yeah, I was going to just add one thing that we've heard that I think is worth mentioning about adult children. Some parents fight this aggressively, this idea that they're giving up control to their child. It's a good segue, it’s not so much the same case with a spouse because there's been more parity. There's been more sharing in many cases, not always, but it's an easier part of it. I think it's a real difference. We hear it a lot, especially in support groups. “Well, I try and my mother or my dad, I'm the parent therefore you are the child still.” It's really what she said. It's role reversal. Anyway, for me, I think a couple of things that are more spouse-related and maybe more male-related. I don't know. Anger. I think that you're fighting your anger about why me? Why us? I remember writing down in a presentation we were giving–hey, I didn't sign up for this. Not this kind of involvement. Yes, I'm going to be there for you. I love you. But not this, not the frustration of dealing with it. I think that combined with a loss of intimacy, and again, this is an age-related issue but at our age, you know, we were still intimate. So it ended. But I think those are things that are very personal to a spouse that are not necessarily the same for a parent. I'll leave it there.

Chin: Both of you have these different experiences, and then you know each other. What happens that prompts you to say, "Hey, let's start a podcast, and let's do it with this group at UC Irvine?" How does that form?

Naeve: I’ll tell you a little bit and then I’m gonna pass it to Steve because he’s the one really  who started all this. I have to say that when mom passed in 2013, I couldn't get it out of my head that I needed to do something to help other people. Granted, there was more information in 2013 than there was in 2005, I’ll tell you that, but I still felt the need to help people navigate this journey. I started a website called A New Path for Mom, and I posted blogs about my stories. That’s what I was doing. Then I got a call from Steve. (Laughs) I was on all kinds of gala committees at UCI, so he kind of knew me. Anyway, Steve, go ahead. Explain.

O'Leary: It became very apparent to me–I was facilitating a men's group for eight years. I was involved in some other projects at the state level, and I was starting to see that this community of caregivers–well, the patients of Alzheimer's, it's a difficult journey for them, impossible journey for them–but the caregiver, I used to coin another phrase, “Where is the class that we were supposed to get to tell us what this was going to be like?” As it turns out, the Alzheimer's Association has some classes which are very helpful in prepping you for this journey, but it certainly didn't feel like that in the beginning. I was working with Josh at UCI MIND, and we felt like we needed to up our game in terms of video content and audio content. We identified with the help of another gentleman, Gil Aronowitz. We came up with this whole array of things that we were going to start doing. My passion was a caregiver podcast. I think we went with podcasts because it's easy for people that have no training to feel comfortable. We started identifying issues and all of these things. Then Josh says to me, what do you think about a co-host? Of course, my ego was like, “Wow, what do you mean? I can do this all on my own!” (Laughs) Then I spoke to Virginia and I saw this incredibly lovely, caring, thoughtful person. If you listen to our podcast, there really is a difference between the two of us. There's this soothing, calm, very engaged person. Then there's me. We came at it from two different points of view. It was a perfect marriage, and we've enjoyed each other's company. We've enjoyed preparing for these things together. Sometimes partnerships don't always work out, but I think the core issue was caregivers depend on talking to people who've been on the journey. Our goal was to interview caregivers talking about how to get rid of or take away the keys, or how to set up your house to care for a loved one, or on any number of different issues. Then we started incorporating some docs. They've got some things to share, so it was beneficial. I think that that focus, caregivers helping caregivers, became our kind of our mantra. We've stuck to that.

Chin: Yeah, it's a wonderful mantra. I completely agree. I think one of the unfortunate yet silver linings of how common Alzheimer’s, and all the related diseases, is that it creates even more caregivers that know each other, that learn from each other, that have that sort of connection with each other. Once you meet a caregiver, there's sort of that bond with another caregiver, right? There's that nod that we give each other as caregivers, that recognition. It's street credit is what I say when I'm in clinic with my patients and I tell them my story. I say things to them that I don't think other providers would say because it's street credit. Once you've done it, you know it.  I love the podcast. I love your podcast for that reason. For our listeners, when Steve says Josh, he means Dr. Josh Grill, who is the director of the ADRC over at UC Irvine. It's not just Josh. It is Dr. Grill, who is an incredible researcher. What I want to ask you then, is what has this podcast and the guests–the many guests you've had that have talked to you, whether that be about caregiver strategies or the things that they have done–what have you learned from them? Whether it's the strategies, the supports that they've done, the research that they've done– because I know you've had some docs, –what do you take away from that? What do you think are some key things that you guys have learned?

Naeve: Well, I'll tell you what I've learned. Like I said, I was really slow learning about all these things. I did not seek out support groups. I have figured out from all the interviews that we've done and knowing Steve, because he ran support groups, how important they are. I would have benefited. I didn't have a good experience with the first time I joined one, so I didn't try again. I didn't try again and I should have. Many, many of our guests say how important a support group is for them.

O'Leary: I think it goes to kind of a bigger issue that we both agree upon. It's being open to help. Recognizing, again–maybe a guy's comment–we're all built on this idea that we can control anything. When you're in this situation, you are not in control. You might think you are, but you aren't. This idea of opening yourself up to assistance, being big enough to realize that you need help at whatever stage it might be, a support group is one way. You know, the Lord could be another way. There can be a variety of ways that you can get help in dealing and planning and making this journey successful. One of the things I think is critical is being open to help. You can't see this, but I would do these talks and I would say, “Here's what we're all doing. We have our hands tight together. We're not telling anybody because, of course, it's Alzheimer's.” Then what we realize is we need to open our arms and we need to get involved with other people. We need information sharing. We need to be able to share. You said we talk about being touched by this disease. You run into people who are like us, you know, adult children or spouses. We even run into kids, you know, in their twenties who are caring for a grandparent and have stepped up. It's a real bag of tricks in terms of the number of people that are involved. It all comes down to getting help. Then I think another thing that's important I would say–there's a lot of things we could probably talk about–is monitoring your own health. That is mental health as well as physical health, because you can't be a great caregiver if you're not in good shape. If you don't get breaks and if you don't take time away and if you don't have social and physical information that gets you outside of caregiving, you're doomed. We've seen cases where the caregiver actually passes before the patient with Alzheimer's just because of the stress and their inability to access help. If there's one golden rule, it's ask for help and get it.

Chin: Well, you answered my next question, which is really going to be, what's some advice for people who are beginning their journey? I love the idea that you ask for help, look for those resources. I'm going to ask you now, for someone who's listening and they're in the middle of this journey. They know that they've had this diagnosis, they're caregiving for a loved one, maybe they've already progressed from mild cognitive impairment to the mild stage or the moderate stage of dementia. What advice do you have for them as they're looking down to the future of more progression, of more behavioral symptoms, to that point of dying? What do you say to them where they're looking at the second half of this disease?

Naeve: I think the most important lesson I learned along the way was to join their world. I was at my wit's end one day and I called Alzheimer's Orange County and I got somebody on the phone with me and she said, “You know, I'll bet when you were growing up, you were taught not to lie.” I said, “That's true.” She said, “Well, it's time to forget that lesson. It's time to learn that lying isn't a bad thing and call it therapeutic fibbing.” Okay. It helped tremendously for me to know that when mom was talking about my dad being her second husband, I'm like, no, you guys were married for 55 years. I should have said, well, I hope your first husband was handsome, something. I always say this, if they say it's snowing outside and it's truly 90 degrees, it's snowing. You say, isn't the snow pretty? That just solves all kinds of problems. A look comes over their face like relief that you're understanding what they just said. It could be completely wrong, but you have to go with it. That's my biggest lesson.

O'Leary: I would say that, just piggybacking on that, learn to not use the word no. It doesn't help. Being right is not what it's all about. Being there for their care and consideration, being in the moment–that's what Virginia is talking about. Learn to redirect. If you're being asked the question for the twentieth time in a row, which happens, you just redirect, and you have to develop this level of patience. It helps to get in the moment, to be in their timeframe. I think this leads us to another thing: adjusting to the fact of lack of recognition. We've run into people, at least in our men's group, the hardest time for these guys was when their wife stopped recognizing them. It was like, I can't go anymore. I can't visit them anymore. I can't see them anymore. They don't know who I am. It was like, well, down deep in their core, there was still a lady you loved. She connected. At my end, Patty would see me coming down the hallway and she would start giggling and laughing. Then I'd hold her hand and she would giggle. Then it would be over. It would last a few minutes, a minute, maybe two. That was still there, there was still something left, and there was still a connection left. Take what you get and understand it's not going to be what it was before and that this progression. Then look for those moments. I think it becomes harder and harder because there's no identity. You've lost your identity with your spouse or with your mom, and you feel like, “Who am I?” That's really, really hard. That adjustment becomes something you have to do. You have to get in their moment and understand that they still love you and that there's something there.

Chin: Well, thank you both for sharing that. As family members affected by Alzheimer's disease, where do you hope the field is–when I say field, this could be research, it could be clinical–where do you hope it is in five years? Then to end, where do you hope your podcast is in five years?

Naeve: Well, when I bump into a researcher at UCI, the first thing I say is, “Could you guys hurry up with this, please?” (Laughs) I am feeling a little excitement in the world, in the realm of Alzheimer's research. It seems to be a little bit more positive than it's been in a while. I'm happy about that. I want them to just speed things up. I guess I just want the podcast to keep going for as long as we can do it, and as long as we are being helpful. It would be nice if we weren't needed any longer. I'll end with that.

O'Leary: That's a mic drop right there. There she is, as always. 

Naeve: (Laughs)

O’Leary: Yeah, I mean, I would add just piggyback onto hers. I mean, I have three kids. There's a history. I now know that I have APOE4. I tried to be a part of the AHEAD study. I know that there's some stuff going on. If we don't find a cure, I've got 45, 50-year-old kids. They're going to have some of these symptoms potentially. I do think, again piggybacking with Virginia, the research that's going on earlier in this disease, this shift to trying to find and identify, and with all the things that are happening in that arena, the potential blood test, the PET scans, all of these things that are out there. As she said, 10 years ago, you didn't know until you did a brain autopsy. Now you're in a position where you could identify this thing sooner. We have a much better chance of, if it's only just delaying it and something else kills you. Hey, bring it on, baby, because this isn't any fun. So finding ways to–maybe, you can't cure it, maybe you can eventually, but delaying it six months, a year, two years, that doesn't sound like a lot, but I'll tell you, it's a big deal when you're in the journey. It makes a huge difference. So I think she's right. On the podcast, I guess I'm really proud of our work. I think we've got a unique take on this. I guess I'd like more people to have a chance to hear it. I don't think Virginia and I have run into anybody who hasn't said, “Wow, this is different. I love hearing the docs, I love hearing other people, but you guys have got this array of different topics,” and I think that's the beauty of it. There's unlimited topics that we can probably deal with and go back and do another version of it. Plus, we have a really good time together.

Chin: We'll have in our show notes a link to your wonderful podcast, you two. So with that, I'd like to thank you both for being on Dementia Matters. We certainly will have you both on in the future.

Naeve: Thank you for having us.

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