This HealthChangers episode is part of a special mini-series highlighting our nation's caregivers in partnership with Archangels, a national movement recognizing and honoring caregivers.
Until recently there were 44 million caregivers in the United States. Now in the midst of a global pandemic, we are all caregivers. Caregivers include medical teams, grocery workers, truck drivers, and others working to find balance, trying to perform at work while all at the same time, not jeopardizing the care provided to their loved ones. For this special episode of HealthChangers we hear a personal story from Dr. James Polo and Peggy Maguire, both from Cambia.
Peggy Maguire (PM): Hello, Dr. Polo, welcome to the podcast. Thank you so much for joining us. To start out, can you just tell me a little bit about yourself and your background?
Jim Polo (JP): Sure. So my name is Jim Polo. I'm a physician from a training perspective. I'm a psychiatrist and had spent many years in practice and currently I serve as an executive medical director managing and helping with the region's health plans under Cambia Health Solutions.
PM: We're really grateful for everything you're doing in that role. Let me back you up a few months to what your life was like pre COVID. We have been experiencing an unprecedented series of events in our country over the last several months, but I really want to take you back to January or February of this year and ask you just to paint a picture of what your life was like pre COVID.
JP: I currently live in Gig Harbor, Washington and one of the reasons why I live in Gig Harbor, Washington is because this is where my parents live. My parents are both in their mid-eighties and they are now both in an assisted living facility. My dad had to move into that facility first, about three years ago after he had a major car accident and had significant injuries that led to difficulties with walking, but he also had pretty significant decline of his memory and his ability to reason. And so I've been the major caretaker and the manager of both of my parent's health for a number of years. When he was admitted to that facility, it was very close to where I live and I could stop and see him on my way back and forth from work a couple of times a week, and also take my mom to visit him when necessary as he was recuperating, but it became obvious as he was recuperating that he was not going to be able to return to home.
“It became obvious as he was recuperating that he was not going to be able to [come back home].”
And after being there for a year and finishing long-term rehab and getting into the assisted living facility, it became obvious that my mom was declining as well too. My mom was also having memory problems. My mom was forgetful, she would get lost driving in town, she would get confused about when to eat, when not to eat, and so finally we made the decision. It would be good to move my parents in together in the very same assisted living facility. And so prior to COVID, they were both at a relatively small assisted living facility that was providing great care. I would visit them about three, sometimes four times a week. Sometimes it was just for a short visit, 30 minutes. Sometimes it was for a longer visit where I would actually sit and have a meal with them. And I might be there for an hour and a half.
And that went on for about two years. And they have been slowly declining. Decreased memory, they would forget who my kids were, they would very often not remember when I had last visited. If I missed a visit, they sometimes didn't recognize it. But once I could sit down with them and get them talking, in general I could get them to have a good conversation. And they would remember the past and they would remember me. And from a health perspective, they were doing okay. No major chronic medical problems that were getting worse, but clearly a decline of their memory and clearly a challenge with reasoning.
So a couple examples, my dad enjoyed watching movies and I noticed he was watching the same movie over and over again. I mean, literally watching the same movie, 20, 30, 40, 50, 60 times a month. And I asked him one time why he was watching the same movie. And he just casually said, well, it's easy because I know exactly how it's going to end. And I realized that, clearly his decline was worse than I had actually realized. An example with my mother was that I brought my grandson in, who also lives nearby one time to visit. And she was asking a ton of questions about him and it was very clear that she thought he was my son, my new son. And obviously I don't have a new son. My sons are in their thirties.
I was grateful that I got to see them and I was grateful that they were being taken care of. Prior to moving my mom in, it was a nightmare. She lived a mile away and I was constantly getting up in the middle of the night. I had to deal with the fireman that got called to a store because there's a lady that was lost. So in some ways, having them in assisted living was really reassuring to me because I knew that they were cared for. I knew that they couldn't get lost. We went through the issue of taking away cars and all that kind of stuff. And I knew that they were getting fed and they didn't really have access to stoves and microwaves where they could make mistakes. So that was life before COVID and actually doing okay.
“I knew that they were getting fed and they didn't really have access to stoves and microwaves where they could make mistakes. So that was life before COVID and actually doing okay.”
PM: I have a similar situation in my family where my husband's parents moved out of their long-time home into an assisted living facility and we helped with that move and it's very challenging. And then he is the only child in Oregon, of his parents. And so he and I really became the primary caregivers for them even after they moved in. But it was for us, also reassuring to know that they were safe and cared for. Now, I want to ask you how your life has changed with COVID but before I do that, I need to know what movie your dad was watching.
JP: There's actually two, and they're quite interesting. One movie that my dad was watching over and over and over is the movie called Patton. It's about the life of General Patton. And I think the significance there is that my dad spent almost 25 years as a US Army officer. He was an immigrant to the United States and one of the ways that he got citizenship was by joining the army and he ended up serving for many, many years and is very proud of his service. So he loved watching this movie Patton over and over, and I think it was just the familiarity of the military aspect of that movie.
PM: And maybe the sense of pride having been a part of that, right.
JP: Yeah, and then the second movie that he's watched over and over and over has been Dr. Zhivago. And Dr. Zhivago is really at its essence, it's a love story.
PM: It's so romantic. Lovely.
JP: And my parents, they've been together for 65 years. They knew each other from the time that they were three. They're both immigrants from a foreign country. They got married in their very young twenties and I think there's something about that movie that just makes him think about himself and his life being an immigrant and traveling somewhere and just being with the same person all this time.
Post COVID Caretaking Highlights Vulnerabilities
PM: I think you've painted a really good picture of life pre COVID and what you were doing and how you were caring for your parents at that time. How have things changed over the last few months?
JP: That's a hard question because it really brings up a few things are a little painful. So first of all, the assisted living facility where they are implemented real stringent rules about visitors. They limited who their workforce was. None of the residents eat in the dining room, they all eat in their own rooms and no visitors are allowed inside of the facility. Now the residents are allowed to leave the facility if they want and they're allowed to leave with masks and with guidance so people can pick people up and take them out but my parents were not really at that point before COVID. I mean, prior to COVID, we took my parents out maybe once or twice, every few months for a dinner somewhere, which was a major undertaking because my dad is wheelchair bound and my mom is in a walker and they get confused. So we just didn't do that very often. We just visited there at the location.
When COVID went into place, visiting them was no longer really an option. But initially, and we didn't really know how long that was going to be. And so the first thing that I noticed is that first of all, my parents weren't missing me, which was one of those things that suddenly hit me. I would call them up and I would ask them how they were doing. And for the first couple of weeks, they would repeatedly thank me for "last week's visit." And what I realized is that they knew that I visited a lot and they knew that it was recent and they wanted to remember to thank me, but the reality is they didn't remember that I had or had not visited. So it really just forced me to recognize they don't really have a lot of memory.
“[What] was difficult is that on the phone it's very hard to engage them in a conversation. If I ask questions, they usually answer with very simple yes’ or no’s and they don't usually ask questions…it really almost becomes a one-way conversation.”
JP: The second thing that was difficult is that on the phone, it's very hard to engage them in a conversation. If I ask questions, they usually answer with very simple yes’ or no’s and they don't usually ask questions. And I don't think it's that they're not interested, I think it's that they just don't understand. So it really almost becomes a one way conversation. How are you doing? Fine. Is anything new? No. How are you handling any in your rooms? Okay. Oh, let me tell you about the kids. And then I would launch into a description of the kids and of course at the end of each phone call, they would say, thank you. We love you. We'll see you soon and I have explained multiple times that I can't visit because of the virus and I've explained what a virus is. And each time I explain it, they seem to understand it only the next time I would call it was the same discussion all over again.
The sad part is that I really began to realize, to be honest, the real depth of their impairment. At the same time, it was a little bit of a respite. I found that I wasn't visiting as much, well I wasn't visiting it at all because I wasn't allowed to really visit. I still had to drive by and drop off Depends [adult diapers] for my father and I would occasionally bring in prescriptions that had been refilled. But in some ways, it was a little bit of a respite from having to visit so often and I didn't have to feel guilty because it wasn't that I was not wanting to visit. It said I wasn't allowed to. It wasn't even my fault so to speak.
I'll highlight that there was one time I came to drop off some things that they needed and it just turned out they happen to be at the front door and the front door is sliding glass doors that were locked, that are currently locked during COVID. But they saw me and recognized me, which was really, it was really warm, it really made me feel good. They recognized me right away but it was real clear they couldn't understand at all why I couldn't come in and "I don't know how to open this door, Jim. I don't know how to let you in." "Well, mom, the door's locked because of COVID and they want to protect you." "Oh, okay. Well, can you come in then to visit?" So that ended up being a very awkward 10 or 15 minute exchange because I knew I had to leave. I couldn't go in, they couldn't quite understand. And of course I was worried the whole time that my mom was going to fall over and of course my dad was in a wheelchair and he was looking a little bit lost.
And what I learned from that experience is that if I was going to bring things in, I wanted to try not to have it happen while they were there, because just having that conversation was hard for them, hard for me.
PM: It sounds very challenging emotionally.
Visiting at Long-term Care Homes Stop or Slow Down Among Pandemic
JP: I guess on a personal feeling, after the first three to four weeks, I actually started missing them. I had that break, hey, I wasn't going as often. And Kathy, my wife, who's known them for 35 years because we've been married a very long time, would also often go with me and sometimes she would go on her own. But we found that after about a month, we actually were missing them.
“The second part of my learning is that it used to be that since I visited so often, I really didn't notice too many changes each time. I really had to sit down and say to myself, I've noticed over the past couple of months, my mom's a little bit more forgetful about this, or my dad is a little bit less able to reason about that.”
And then the other thing that's been hard and, well let me back up and just say that about into the second month, they developed at this facility what's called window visits. They have a break room on the inside of the facility that has a large window where they open the window and they let the residents sit and then the family members can come and sit on the outside of the window, right outside the facility and you're about eight to 10 feet away from each other and you can have a conversation going back and forth.
What has been striking to me now, which is the second part of my learning is that it used to be that since I visited so often, I really didn't notice too many changes each time. I really had to sit down and say to myself, I've noticed over the past couple of months, my mom's a little bit more forgetful about this, or my dad is a little bit less able to reason about that. But since I'm having visits now that are a little bit more spaced, each time I go, I almost feel like I notice a distinct drop from the previous time.
PM: That's interesting and not surprising. So one of the things I was going to tell you, as you were describing these window visits is my father in law has now passed away since they moved into that facility a couple of years ago, but we still go to visit my mother in law and similarly, her facility is on lockdown and visitors aren't allowed inside, but we have been going and standing on the lawn and she stands on a balcony that is very distant. At least 10 or 15 feet apart. And we've been wearing our masks to have these visits and I can tell, she's just turned 90 earlier this year, but she finds the whole mask annoying and will either wear it under her nose hanging off one ear, have the string off one ear and not covering her face. And so we're constantly trying to tell her, you need to wear your mask even just in the halls and I think that's an interesting dynamic as well. And I completely agree with you and understand that you find yourself missing your parents as much as the reciprocal that they miss you. It's a very challenging and unprecedented time that we're facing.
JP: Prior to COVID I visited often enough that my parents didn't frequently call me because number one, they didn't really know how to use the phone, and there was no real need to call because I was seeing them often enough. Well, as it turns out, about three months into the COVID pandemic now, there have been a few times where they've mentioned to the staff that they're missing their son and lonely and so they would help my parents call me because they don't know how to use their phone. They have a wall phone. And that's gone fine in the sense that they call and we talk for few minutes and then they seem to be okay and arrange for another window visit and come see them, but what I'm recognizing is that despite their significant memory difficulties, despite their significant reasoning challenges, they get very lonely.
And in their own facility, since all the residents are eating in their own rooms, they don't even have the ability to sit in the dining room where other people are just around. Oftentimes my parents would be in the dining room just eating together at their own little table. And even though they didn't talk with anybody, there were other people around. And as they were walking from the dining room back to their room, they would say hello to a few people. They may stop and try to play bingo with the crowd or whatever, but all of those activities have gone away. And so even though my parents are having significant challenges with their dementia, they're really very, very lonely.
PM: As human beings, we live in relation to others and we crave connection. And I think the safety concerns are putting people into isolation and that creates loneliness and we've seen a number of mental health issues arising because of this loneliness and isolation. I'm sure there are caregivers who find themselves feeling lonely and isolated too. I'm wondering if we can change gears a little bit and talk, you've shared so many personal reflections about your ups and downs and your relationship with your parents and I truly appreciate your willingness to share that because I think it's in sharing these experiences that we connect and grow. I'm wondering though, if you could take a moment to reflect on any advice you have for people navigating similar situations or people experiencing loneliness from your vantage point as a mental health expert.
JP: Yeah. I think this is something that's really, really important that I've thought about for quite a bit of time. As humans we're just driven to be in relationships and the reality is that relationships need to have a component to them where you can actually be near somebody. Hugging somebody, touching somebody, being able to actually see their facial expressions, smell their fragrance. All of that is part of being in a relationship. And you don't realize how important that is to you until you don't have it all of a sudden. Now from a personal perspective, I'm fortunate. My wife and I, we live together obviously. I get to see her every day. We're both working from home. My three adult children all live within a 10 mile radius and we've been able to continue to meet with our daughter and our son because we had already been meeting with them all along so we figured well, since we're all working from home, we've all been exposed to each other, it's no big deal. Although one of my sons who works in a hospital, we haven't actually seen him for three months because he's afraid that he will get us sick.
“As human beings, we live in relation to others and we crave connection. And I think the safety concerns are putting people into isolation and that creates loneliness and we've seen a number of mental health issues arising because of this loneliness and isolation. I'm sure there are caregivers who find themselves feeling lonely and isolated too.”
JP: I'm finding that I think about him more and more, mainly because I don't see him, even though I talk to him. I talk to him on the phone, how's it going? What's going on at work? We have a little zoom chat. I can see him. He doesn't look any different than he looked before, but there's just something that's clearly missing, you know? And so I think this issue of loneliness is something for all of us that's going to be really important. And the challenge is that you can be around a lot of people, but still be lonely. It's about the quality of connection with other people.
And sometimes there are some people I think that maybe they don't need a lot of connections, they do okay with just two or three. And then there are other people that are more outgoing and they tend to thrive on lots of connections. So we're all different in that way. But I feel lucky, at least I have some close family members, but for example, we haven't been able to go to church for quite some time now, and we do that online and we haven't been able to have dinner with some friends and so we've done little zoom chats where we enjoy a glass of wine together. There's something about it. That's just not quite the same.
PM: Right. Right. Well, I want to thank you for taking the time to talk with us today and for sharing your personal story and also sharing your advice as an expert. Certainly appreciate everything you've shared and I'm deeply grateful for your time today and your wisdom. So thanks for joining us and my best to you and your family as we to navigate this pandemic.
JP: Thank you very much Peggy, have a great day.
Caregiving is Never Easy, and COVID-19 has Made it Harder
Leslie Constans (Host of HealthChangers Podcast): Before we wrap up this special episode on caregiving in a COVID-19 world, we asked Alex Drane, the co- founder of ARCHANGELS, a national movement to recognize and honor caregivers, to share a little reflection on what she heard.
Alex Drane: Peggy and Jim, that was incredible. This one actually took me a bit to digest and I realized it's because he sounds so calm, but what he's saying is not calm, it is so freaking hard. And it got me thinking, I think that's because he's a psychiatrist, right? This is his job. So he can talk about these things without breaking down, but most of us really could not. And while Jim is speaking calmly, he's obviously hurting and he doesn't have all the answers. And I think that's a really important thing for us to remember. Jim is an executive medical director for region. He has knowledge and access, and he's finding all this overwhelming, imagine what it's like for all those who don't have that level of training or that level of access.
I was thinking about my own situation and how lucky I am to know that my parents are safe and Peggy with that beautiful, but haunting visual of her mom on the balcony or Jim's parents through the door of their facility and later through the window. And I know what each of us feels as we are struggling to these truly unprecedented times is the pain of it, but also the gratitude that our loved ones are in facilities that really care. And I loved Jim talking about how the nurses and aides are helping his parents call him so he can help them with their loneliness and also clearly their anxiety.
“I know what each of us feels as we are struggling to these truly unprecedented times is the pain of it, but also the gratitude that our loved ones are in facilities that really care.”
And I also hear story after story of loved ones in facilities where that care is breaking down and the added stress and pain of that. And let's all remember as caregivers to look out for each other and to help each other by sharing our own stories and also ideas for when things aren't going well. And sometimes, truly something is up and you know it. And the state of Oregon actually has a way to report serious incidents so they can investigate and put action plans together to ensure that the care delivered is great care. If you have any concerns about your loved one's care, just contact the state of Oregon's Longterm Care Ombudsman program and that's toll free at 1-800-522-2602. And you could also of course file a complaint online on their website at oltco.org and you would just select long-term care programs.
Again, this is obviously in very small numbers of circumstances, but when they happen, you want to get on top of it, that's heartbreaking. And the reality is this pandemic is unrelenting and none of us know how it's going to end. And you add on top of that the point Jim makes about how we as humans, we really need proximity and we crave touch, to hug and to be hugged and we don't have that right now and that's hard enough. And I think if you add to that, the additional pain of a loved one with dementia or cognitive impairment, it can be heartbreaking to not really be able to explain why we cannot be wrapping our loved ones up in the most ginormous cocoon of a hug ever.
“We as humans, we really need proximity and we crave touch, to hug and to be hugged and we don't have that right now and that's hard enough.”
And the interesting thing about this loneliness in COVID times, the data shows it's not just our elders who are feeling it, it's all the way down to Gen Z. In fact, age appears to be somewhat protective, so Gen Z are feeling this loneliness, this anxiety, this depression, even more than boomers. And there are also all these gorgeous bright spots, right? My favorite part of this was Jim's dad saying that he watches the same movie over and over because he knows exactly how it's going to end. I'm in. And I think that's what all of us are wishing for right now. Some clarity on where this is all going and when it's going to end and the lack of that can cause anxiety, real anxiety.
But what I love so much about Cambia is that they get that, Mark Ganz, [Cambia) CEO himself has shared the anxiety. He felt as the impact of COVID was beginning to unfold. And I so applaud him for that bravery and reminding the rest of us, here he is, the CEO of Cambia, and he was feeling anxiety. And I appreciate that about Jim and Peggy sharing their stories as well. These are leaders who are super well-trained in all of this, and they are having a hard time so I can only imagine, therefore, how this feels for everyone else. So if you are feeling stressed or anxious or concerned that you might be depressed, or maybe you know a loved one who is, there's this incredible resource, it's called the National Alliance on Mental Illness (NAMI) for short. NAMI, and they have a national hotline you can call and they are incredible. And that number is 1-800-950-5264. You can also get more information about support groups and family resources in Oregon` just by going to their website at https://www.nami.org, and you would just click on, find your local NAMI, right in their homepage.
“Let's just take a minute to love on them and recognize the love that they are giving and then give them a lift.”
In closing, thank you so much. Thank you, Leslie, for inviting me to be a part. Thank you, Peggy and Jim for essentially ripping out your guts and offering them to all of us because it helps us all feel less alone and they do also offer some great tips and ideas for things we can be doing. And so for me personally, it's just a reminder of what we've been collaborating with Cambia on, this notion of look, love lift. Wherever you are, look around you. There are caregivers everywhere, and they don't necessarily look like what we would expect.
Let's just take a minute to love on them and recognize the love that they are giving and then give them a lift. And that that lift can be something like forward along this podcast. So someone that you know who might be in a situation for which this stuff would really resonate, could get that lift. But most importantly, let's just remember to be really loving on each other and appreciating each other, specifically at this time, at this moment in time. Thank you so much and I can't wait to hear what you guys do next. Cheers.
You can find more information on all our episodes at cambiahealth.com. Follow us on Twitter @Cambia. You can now find HealthChangers on all of your favorite platforms. Just search for “HealthChangers” on platforms like Apple podcasts, Spotify and iHeartRadio. Please subscribe and leave a review.
Resources:
- Episode direct download link
- Archive of HealthChangers Podcast
- Peggy Maguire, Senior Vice President of Corporate Social Responsibility and Palliative Care Solution
- Dr. James Polo, Cambia's Executive Medical Director
- Alex Drane, the Co-Founder of ARCHANGELS
- Mark Ganz, Cambia CEO
- National Alliance on Mental Illness (NAMI)
