The Age Guide: Perspectives on the Aging Journey
Welcome to the Age Guide podcast highlighting perspectives on the aging journey. We are here to be your personal Age Guide and enhance your quality of life on the road ahead. This podcast is about putting a face on aging and giving a voice to older adults and caregivers by highlighting their experiences and stories. We want to provide a window into the struggles and joys of aging, to dispel myths and combat ageism. This podcast is hosted by AgeGuide Northeastern Illinois, an Area Agency on Aging in Northeastern Illinois. At AgeGuide, it is our mission to be a vital resource and advocate for people as we age by providing thoughtful guidance, supportive services, and meaningful connections.
The Age Guide: Perspectives on the Aging Journey
Behind Closed Doors: Locked Down in Long-Term Care
This episode gives you an immersive view of what it was like to live in long-term care during the COVID lockdown. Gretchen went into the facility and interviewed two residents about what it was like before, during and after the lockdowns. This podcast shines a light on the struggles and challenges facing long-term care residents and aims to inspire advocacy and change around policies and practices. #theageguidepodcast #caregiving #COVID-19 #pandemic #longtermcare #advocacy
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Hello, and welcome to The Age Guide, perspectives on the aging journey. We are here to be your personal age guide and enhance your quality of life on the road ahead. At Age Guide, it's our mission to be a vital resource and advocate for people as we age by providing thoughtful guidance, supportive services, and meaningful connections. This podcast is about putting a face on aging and giving a voice to older adults and caregivers by highlighting their experiences and stories. We want to provide a window into the struggles and joys of aging to dispel myths and combat ageism. On this episode, we have two guests that are both in the same long-term care facility. They both wanted to use only first names for fear of repercussions from the facility. We dive deep into their lives before and during the COVID lockdown, and how it has changed the way the facility is run now. Our first guest is Catherine. Let's send it to Gretchen, who oversees AgeGuide's advocacy efforts, and listen in.
SPEAKER_00:I want to thank you so much for being willing to talk with me today and tell me a bit of your story. Before we dive into your story, though, can you please tell me a little bit about yourself? Start with your life before you came into this facility, and then tell me what you enjoy and what you've been up to, what your favorite things are. Just tell me a little bit about yourself.
SPEAKER_02:Okay, I have worked for a worldwide accounting company, and I've lived overseas in Asia and Australia. I came up to this area to take care of my dad when I returned from overseas.
SPEAKER_00:So you were a caregiver for your dad.
SPEAKER_02:Yeah, just found myself in this area. I'm used to living in the city, so I'm used to downtown Chicago life. So that was an adjustment for me. And so I started commuting. to work, and on my way home one evening from work, I was in a head-on collision, and that's what brought me initially here. So
SPEAKER_00:initially you came in to get rehab after an accident.
SPEAKER_02:Right. So I was here for eight months, and then subsequently three years later, I had to have an ankle surgery, and so I was here for rehab for that.
SPEAKER_00:Okay, so you went home in between. You went back to work. Mm-hmm. And... You were living independently in the community, and then you injured your ankle. Right.
SPEAKER_02:So the last time I was hospitalized, And going through rehab again, I found my job had been relocated to another state. So I found myself unemployed while I was getting better. That's what brought me here. Unfortunately, my COBRA program had just expired. So I found myself without any insurance and no income coming in.
SPEAKER_00:Yeah, that doesn't leave you with a lot of options. Right. But you figured you'd come here, you'd get some rehabilitation, and hopefully you'd be able to return home. How did you decide to come to, how did you choose this facility?
SPEAKER_02:My doctor had referred me to this facility, and I had been here before with my accident and had gotten some really good care. At the time, the Management really encouraged teamwork, building morale amongst the staff here. But there's been a change in management with what's going on with COVID. There's been newer facilities opening up in the area, and that has attracted some of the longer-term employees.
SPEAKER_00:That's
SPEAKER_02:an
SPEAKER_00:interesting point. You mentioned that things used to be different. Things have changed. And we know that one thing COVID did was really shine a light on problems in long-term care that had already existed for a long time. But then they got even worse or they became more obvious maybe during the pandemic. There were already staffing issues before, residence rights issues were already challenging before the pandemic. But what was it like here, though, when you first arrived? You said, you know, things used to be better. What were some of the positive aspects of living here? Did you have friends who would come visit? Did you have friends within the facility that you could hang out with and activities to do and things like that? that?
SPEAKER_02:Yes, we had activities and there was, you know, a close-knit circle of residents that, you know, there was a sense of community. And a lot of the staff from when I was here before, from my car accident, they were still working here. So I had gotten to know a lot of the staff already and they were familiar with me. So when I originally came back to this facility. I thought I felt confident in the care that I was going to get because I'd been here before.
SPEAKER_00:Right. That makes sense. Things have changed. Things have changed. Yes. They were already starting to have some staffing issues. But that's interesting that you still felt like there was a sense of community here. People cared about each other. The staff cared about the residents. There was some camaraderie there. You felt respected and you trusted that you were getting the best care possible. So can you tell us a little bit about what happened in March of 2020 when the nursing home closed its doors? What was going on for you and inside this facility? Did they explain what was going on? Did it happen suddenly? Did you have some warning that they were going to be shutting down? Once
SPEAKER_02:COVID hit our section of this facility, it happened suddenly. I actually am very certain that I got this from an agency nurse.
SPEAKER_00:Okay,
SPEAKER_02:you got COVID...
SPEAKER_00:during the lockdown? I
SPEAKER_02:got COVID during the lockdown.
SPEAKER_00:Early on?
SPEAKER_02:No. My roommate and I were very, very careful and conscious of what was going on. And so we were keeping our door closed. We pretty much just stayed within these four walls and keeping our room very clean with antiseptic and stuff like that. It was an agency nurse that came in and was handing out medicine that we got it from. Oh, no. She just didn't look well that day, and this is when it was taking three days for COVID results to come in, and she was told that afternoon that she had COVID. After
SPEAKER_00:she'd already been in everybody's room on the floor. Yes, and
SPEAKER_02:they sent her home.
SPEAKER_00:So did a lot of people on this floor get COVID then?
SPEAKER_02:Yes. One half of the floor was quarantined off. And our floor, our side at that time, there hadn't been any cases. But then once one of us got it, it was going on. So as soon as we tested positive, they opened up a ward or a hallway. So we were all moved into quarantine on the first floor. We didn't have much time to gather our stuff. Really? So
SPEAKER_00:what was that like? They just came in your room and said, hey, it's time to go? Grab your stuff. We're going now.
SPEAKER_02:You got to go. I... was hospitalized like three days later. I had a bad case and a high fever. So I went straight to the hospital from the hall that they had closed off. It was closed off with plastic on the walls and everything. So many of us that got moved down there were cleared from quarantine and moved back to their rooms. They couldn't find our stuff. Oh, no. So it was very unorganized when they moved us down to quarantine. My stuff eventually, because I was in the hospital for a month and a half, they started packing my stuff. Oh. They didn't think I was coming back. Okay. So some of my things were missing. Oh, dear. And I'm not the only patient that was missing their belongings. And we kept asking about them. And the management at the time, we didn't know at the time that there was a dime room where a lot of things of belongings or boxes of people's things that didn't get marked were staged.
SPEAKER_00:Okay.
SPEAKER_02:So our things were on another floor that we weren't allowed to go to because we couldn't move from floor to floor. We had to stay on our own floor and in our own rooms. We couldn't even go out in the hallway. But somebody must have known where your stuff was that it had been boxed up. you'll be able to go down there and look.
SPEAKER_00:Oh, goodness. So you were just without your things. You didn't know if you'd ever get them back again. No,
SPEAKER_02:like in particular, my wheelchair, which was something I had bought. It wasn't something that was provided for me. My wheelchair had been down there and they kept giving me different wheelchairs that were either too wide for my body or too short for my long legs. And I was like, I want my wheelchair that fits me perfectly. And I had bought with my hard-earned money before I Right. Came here.
SPEAKER_00:You were looking for your wheelchair. Nobody's helping you find it. They're just bringing you other wheelchairs that don't work for you. And it's there all along. And
SPEAKER_02:in the meantime, my cell phone was missing. Oh, no. You know, so I haven't had a cell phone for quite some time. You still
SPEAKER_00:don't? No. Wow. And that's your only connection to the outside world, really, is your phone. Goodness. Goodness. Wow. So what else was going on during the lockdown? You said you had to stay in your rooms. Was anyone allowed out in the hallways at all? No. Not at all. Not even to walk for a little while to get some exercise?
SPEAKER_02:No. Some people that they used to, at least like they used to dress and get put up in their chair for a few hours a day, they stopped doing that. They stopped dressing people. They were just leaving them in bed. So what I've seen is a lot of them, a lot of the people that were left just left in bed, like they've degenerated.
SPEAKER_00:Right. If you don't get up and move, you're going to lose the ability to do that. It was just so hard to understand why this was the way it was, right? Right. But even if you did understand what was going on, were they communicating with you so that you really knew why they were doing the things they were doing and what the expectations were and how they were keeping you safe?
SPEAKER_02:Yeah. The hard thing was, like, not even let us go out in the hall so that we could... get some, get some exercise.
SPEAKER_00:Yeah. Not even like one person at a time out in the hall to walk a little bit. None of that, huh?
SPEAKER_02:Right.
SPEAKER_00:Okay. So you were stuck in the four walls and this is not a big room. I would have to say this is a fairly small room for two people to be stuck in day after day. And the lockdown went on for, for a while. You were out for some of that at the hospital, but then you came back and you still had to stay in your room when you got back?
SPEAKER_02:Yeah, I was bed bound.
SPEAKER_00:Okay.
SPEAKER_02:And yes, we were still staying in our room at that time. We weren't allowed to go out in the hall or anything yet.
SPEAKER_00:So they just came in your room to bring you meals and medicine and things to check on you and that was it?
SPEAKER_02:Mm-hmm.
SPEAKER_00:Okay. Did you know how the other residents on the floor were doing?
SPEAKER_02:No. Because we couldn't visit each other. We had, you know, heard through the grapevine that we had lost a few patients. But you didn't even really know for sure who was still here then. Right. You know, sometimes it was like a surprise. But, you know, once we were able to start going out, it's like, where's Rosie? Where's Nancy? And, you know, then we found out that they'd passed away from COVID.
SPEAKER_00:Oh, that's so sad. That's such a hard way to find out much later.
SPEAKER_02:Some of them... you know, their loved ones couldn't come see them in their last days.
SPEAKER_00:Right. That was another issue was that people couldn't say goodbye. What would you have liked them to do differently during the lockdown?
SPEAKER_02:They could have communicated with us a bit better. They could have let us know where our belongings were. They could have talked to us about replacing things. You know, they offered that they would be replacing things but it you know some of it hasn't really happened did they have a residence council here at this facility and do you participate in that yes i'm the secretary so i speak to other residents that and ask them if they have issues um the ones that are ambulatory they come to the meeting but there's a lot of bed bound people on this floor as well
SPEAKER_00:so the what does the residence council do
SPEAKER_02:um we bring up issues that um people are experiencing and and also like give compliments when they're warranted as to things that we're happy about
SPEAKER_00:okay but it's sort of a chance for all the residents to share what's going on bring up any issues bring up any celebrations talk about the facility and what's going on here do staff from the facility attend or is it just for residents
SPEAKER_02:It's the staff from the facility attend as
SPEAKER_00:well. Oh, they do. So it's not a completely open forum where you really feel comfortable saying anything you want to?
SPEAKER_02:Well, we try to, but we have several issues that we bring up every month that still occur, but Some of it has to do with the fact that we have agency people.
SPEAKER_00:That are hired from outside the facility. Right. Kind of like a temp agency to fill staffing openings. Okay. So the idea, I guess, would be then that there's some staff there so that you can share with them what's going on. Right.
SPEAKER_02:Primarily management. Oh, I see. The person in charge of housekeeping. Right. That makes sense. The person managing the nurses and the CNAs. Okay. Somebody from that... oversees
SPEAKER_00:the kitchen. So if you have an issue with the kitchen, then there's somebody there who can take that back to the management and hopefully try to resolve whatever issue it is. That's very interesting. And that's great that you're so involved in that. It sounds like you're a really good advocate for the other residents.
SPEAKER_02:Yeah, I try to be.
SPEAKER_00:That's wonderful. Because
SPEAKER_02:there's people that can't speak for themselves.
SPEAKER_00:Right. Right. And what would they do without you to kind of speak up for them? And you kind of are some eyes and ears on the floor seeing what's going on. And you're able to do something about that. Now
SPEAKER_03:that we have heard Catherine's story, we are going to turn our attention to Carla. Carla is also a resident and an advocate for many of the residents at that facility. She was willing to share her story with us as well. Let's send it back to Gretchen and listen in.
SPEAKER_00:Well, thank you for being here with us today, Carla. We're so excited to hear your story. We're here with you in the long-term care facility where you've been living now for two years. Before we get into the story of how you got here and what it's been like, can you tell me a little bit about yourself? Like, start with your life before you came in here. I
SPEAKER_01:was always in the food business and also cooking. helping food pantries. There's one across the street from my house. It's called the Lakeview Food Pantry. And after I had retired because of my leg, then I had pneumonia and I went septic.
SPEAKER_00:Oh,
SPEAKER_01:no. Oh, yeah. But I lived through it. You've been through a lot, it sounds like. I have. So how did you end up here? After my son was depressed, He had gotten me a therapy dog, that little yappy therapy dog, yes, a chihuahua. Oh, you're kidding. No, but I taught it how not to yip. So anyway, I was by my neighbor, all the neighbors that were older, and they just fell in love with her. So I would visit, and I'd fall down a flight of stairs. Instead of letting go of the dog, She was safe, and I broke my neck. From there, they did all the surgeries at Illinois Masonic, and then I was living at a bad neighborhood nursing home, but I knew the neighborhood. But you could leave, and you could be gone for 23 hours if you needed to be. You could be gone for three weeks. So that was the advantage to that. My son, he's a general manager for many hotels. We did our Friendsgiving there, and I didn't want nobody to help me use the bathroom because I knew how I brought what I needed, but I must have slipped on something on the dress, so I wound up falling. I busted my head. But I was still conscious and making my jokes and being Carla. And I go, don't send me. They won't let me leave. I don't want to be stuck out here in Lake County. Of course, they sent me in. But so that's how I wound up in Lake County. I would go to the grocery store, which two different grocery stores, two different buses, and then come back within an hour.
SPEAKER_00:You could come and go, and you had some flexibility, and I bet you enjoyed that. I did. Having your independence.
SPEAKER_01:Oh, I loved it. That was supposed to go to public aid buildings and then assisted living buildings, long-term buildings. But I think the money must have ran out for that at that time. So one opened up here in Gurney.
SPEAKER_00:Okay. It was to go in an assisted living facility. Yes, in
SPEAKER_01:Gurney.
UNKNOWN:Okay.
SPEAKER_00:Okay, but you wanted to be back in your hometown. I
SPEAKER_01:wanted to be going home. They said, you know what? We recommend that you go here. This way, when one does open in Chicago, then you can go if you want to go. I had my room picked out. I was on the first floor. You could have therapy dogs there. It was gorgeous. So when I took my fall and broke my tibia, the ambulance came. It was so ugly. Then I wound up going home. And I had my surgery.
SPEAKER_00:So after that surgery, you got out of surgery and you came here to this facility. Correct. And how long were you here before? I was only supposed to be here 90 days. I was going home. You were only supposed to be here 90 days. I was going
SPEAKER_01:home March 5th.
SPEAKER_00:Of 2020.
SPEAKER_01:Of
SPEAKER_00:2020. So can you tell me a little bit about what it was like here after the lockdown? Like, how did that come about? Did they tell you that they were going to be closing the doors and no one was going to get in? Yes, I mean, because it was on TV. We couldn't
SPEAKER_01:get out of our beds for at least six months. If we got changed twice in 24 hours, that was a miracle. Wow. Our people quit because they had to
SPEAKER_00:hire agency people. You mean the staff that worked here quit and then they had to bring in an outside agency? Well, they brought an agency, people. A staffing agency.
SPEAKER_01:While our people were here because everything, you know, we were breaking out with COVID bad. You couldn't get out of your bed
SPEAKER_00:at all? Nobody. Even transfer into your wheelchair for a little while and go out and look out the doorway or anything?
SPEAKER_01:Nope.
SPEAKER_00:Oh, that must have been hard and frustrating. What kinds of things did you see during COVID? During the lockdown. Nothing.
SPEAKER_01:Nobody.
SPEAKER_00:Because you couldn't
SPEAKER_01:get out. Couldn't get out, couldn't change. One day I laid for 24 hours without getting changed. Oh. But my main reason was if they can't change me now, nobody's going to take care of me. I don't want to lay. in a world of waste.
SPEAKER_00:You're not sure that they're really going to take care of you. Oh, here's their net. Yeah. Yeah. That makes sense. I can understand why you'd want to wait on that. So. first of all i want to thank you for sharing your story about what it was like living through the lockdown here in long-term care during the pandemic this is such an important issue and we really hope that hearing your story is going to help bring about some change and i know you really are a big advocate you're an advocate for the other people here you've been a volunteer ombudsman that is really an important role in a facility like this, to be the eyes and ears for people who can't speak up for themselves.
SPEAKER_03:Now that we have learned about our guests and who they are, we want them to walk up the steps, grab a microphone, and get on our Age Stage. This segment allows a soapbox-like platform to speak to the aging community on any topic they want to shine a light on. Katherine will be taking our Age Stage this episode. and talking about her hopes and demands for change in her facility. Let's send it back to Gretchen and listen in.
SPEAKER_00:Katherine, I know you're a great advocate for the residents of this long-term care facility, and you genuinely want to see things improve here. This is your opportunity to be on the age stage and share anything you'd like to say about the challenges of living in long-term care. What would you like to share with the world about what it's like, what happened behind closed doors during the pandemic, and what is continuing to happen to residents?
SPEAKER_02:I have some concerns about the less cognitive people that are here. That's the level of care and attention that I don't feel that they're getting the same level of attention before COVID than before. that they're getting now. And again, that's because of agency issues. Staffing
SPEAKER_00:issues.
SPEAKER_02:Yeah, being shorthanded. They don't have enough staff to be watching them. So occasionally they try to stand up in their chairs. And they can fall. Yeah, they can fall. Getting them water is an issue.
SPEAKER_00:Water is an issue. Yeah, because
SPEAKER_02:some of them stay in the dining room like almost the whole entire day.
SPEAKER_00:Because it's just hard for them to get down the hall to the dining room and back, so they just stay there?
SPEAKER_02:They can't push their chairs themselves.
SPEAKER_00:Oh, and so they get left there?
SPEAKER_02:Yeah.
SPEAKER_00:Oh, dear.
SPEAKER_02:Because of shortages with activities, there hasn't been enough staff to keep them stimulated or go in and check on them.
SPEAKER_00:Yeah, and you're right. If someone isn't getting stimulated and they have a little bit memory loss that can really speed that um dementia along quickly yes because
SPEAKER_02:that's their day is just sitting in a room with nothing to do and they're
SPEAKER_00:yeah
SPEAKER_02:i find them napping in their chair so
SPEAKER_00:then what do you do
SPEAKER_02:well i you know i try to talk to them or spend a little time with them
SPEAKER_00:each day good
SPEAKER_02:A lot of things did happen during COVID.
SPEAKER_00:And how would we know? In my
SPEAKER_02:experience, it gave me the experience of what it's like to be bed bound because people, the CNAs would come in my room and they would put things where I couldn't reach them because I couldn't get out of bed myself. I learned how frustrating it can be for someone that's just kind of... Someone who's lost their mobility and can't get around themselves. How dependent you must have felt. People that need to be changed and they're not being changed as often as they should be.
SPEAKER_00:But that's sort of what you would expect to be the type of care that you would get in a facility.
SPEAKER_02:Right, because that was another thing. Our beauty shop got closed down.
SPEAKER_00:So
SPEAKER_02:none of us have had a haircut in like almost two years.
SPEAKER_00:Still? There's still no beauty shop? No. Nobody comes in to do your hair? No. Wow. But I guess your first priority is probably making sure people get water. Like you mentioned, people are not getting water. People are not getting changed. People are not being moved, dressed. Bedding and linens change. That's
SPEAKER_02:all. Right. You know, they have to get their hearts pumping. And more and more people are, you know, they've lost their motivation or they've become depressed after being in their room for so long. They're not motivated anymore. So you've seen a lot of changes in the residents? Mm-hmm. Yeah. Yeah. We used to go be able to go outside on the grounds. And we can't do that anymore.
SPEAKER_00:Not at all. Not even if you were able to go out by yourself. Yes. They wouldn't let you do that by yourself even. So
SPEAKER_02:it's not a staffing issue. Some of us are
SPEAKER_00:capable. Right. And cognitive enough to do that. And it's not a staffing issue because you wouldn't necessarily need a staff person with you. Right. But you're just not allowed. No. And you don't know why. No. So it sounds like communication is really an issue here.
SPEAKER_02:Well, they say it's for our safety. I think... Well, yeah, they should be keeping an eye on people when they're out there. Those of us that can handle it. Right. And we used to enjoy being outside. There was a group of us that used to meet outside during the nicer months. Right. And we would socialize out there. There were some nice benches out there. That would be so nice, yeah. We're not allowed to do it anymore. My roommate used to walk around the building to get
SPEAKER_00:some exercise.
UNKNOWN:Oh, yeah.
SPEAKER_00:Now everybody's just stuck in here. Right. And now you can probably go out in the halls and do a little bit of walking there. Right, we can go out in the
SPEAKER_02:halls and we're allowed to go to other floors.
SPEAKER_00:Oh, good.
SPEAKER_02:But that's...
SPEAKER_00:But that's not enough. You're still inside. You're not getting fresh air. You're not seeing the horizon ever. That's a real lockdown still. It's almost like the lockdown is still going on in some ways. Do you feel like that? Right,
SPEAKER_02:because they're still cautious with this Omicron virus. apparently there's still employees that are catching it up from the outside. But at some point you need to be able to live your life. Right. We'd like to get to a point where we've got more permanent employees that actually work for this facility.
SPEAKER_00:Who you could get to know and be comfortable with and they would know you guys and know what you need.
SPEAKER_02:Right, because there's a lot of people with different needs on this floor.
SPEAKER_00:That would be really nice to have some consistency in the staffing and to have adequate staffing.
SPEAKER_02:Right.
SPEAKER_00:Because it seems like right now everything is very restricted. And one of the goals, really, if you're talking about long-term care and making improvements, one of the goals that we have at Age Guide is for it to be the least restrictive environment possible. So if you need more supports, those should be there for you. If you don't need the supports, they should not be forced on you.
SPEAKER_02:Right. And some of us would like to see people encouraged to get better.
SPEAKER_00:Right. The rehabilitation side of long-term care seems to have been missing through all of this. So you really have some of your own personal goals, I understand, for recovering and perhaps moving out of here one day.
SPEAKER_02:First of all, I need the ability to get stronger, to use some of the equipment here so that I can... Do some exercises. Yeah. So I can handle being a little more independent and understanding what options are out there. Just a little
SPEAKER_00:more time. I hope for the best for you. I really do. Thank you. And we can forward you some resources, too. We have folks who work in our office who have all kinds of resources that might be helpful for you.
SPEAKER_02:That would be awesome. Sometimes we just don't know. We get overwhelmed because we
SPEAKER_00:just don't know how we're going to do it. It is overwhelming, and it's a big system and a big bureaucracy, and it's hard to figure it all out. Right, because
SPEAKER_02:when you get to my point, I lost everything because I got stuck here. I couldn't keep up with my mortgage.
SPEAKER_00:Right. How would you? You weren't able to work. Right. And then COVID shut everything down. So we'll get you some resources and hope that we can help you with that a little bit. Oh, great. I appreciate talking to you. Thank you for talking to us. This was wonderful. You did great.
SPEAKER_03:Thank you for listening to The Age Guide, Perspectives on the Aging Journey. We hope you learned something new on this podcast because we all have a stake in promoting a high quality of life for people on their aging journey. Age Guide coordinates and administers many services for older adults in Northeastern Illinois. We serve DuPage, Grundy, Kane, Kankakee, Kendall, Lake, McHenry, and Will Counties. Our specially trained professionals are available to answer questions and connect you with local service providers and resources such as Adult Protective Services Program, which responds to and investigates reports of abuse, neglect, and financial exploitation of people 60 plus and adults with disabilities aged 18 to 59 who live in the community. The Long-Term Care Ombudsman Program, which advocates for residents of nursing homes, board and care home, and assisted living facilities. They are trained to resolve problems and can assist with complaints of residents living in long-term care facilities. If you are interested in these services or want to learn more, go to our website at ageguide.org or call our office at 630-293-7488. Please follow our podcasts so when we post our monthly podcast, you are notified on your streaming account. Thank you, and we will see you next time on The Age Guide, Perspectives on the Aging Journey.