The Age Guide: Perspectives on the Aging Journey

Behind Closed Doors: Love, Caregiving & Death During Lockdown

• Age Guide • Season 1 • Episode 7

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This episode features an interview with Lucy Powell, wife and devoted caretaker for Jack who had Dementia. Lucy shares what she and Jack experienced during the COVID-19 lockdown in Long Term Care. Hear what that experience taught her and what we can all do to radically change the structure of care for older adults in this country. #theageguidepodcast #COVID-19 #Pandemic #LongTermCare #Advocacy #ILOlderAdults #OlderAdultAdvocacy

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SPEAKER_00:

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. Today we are going to listen in on a conversation with Lucy Powell, a caregiver for her husband Jack, who was in long-term care during the lockdowns. Let's send it to Gretchen to hear Lucy's story.

SPEAKER_04:

Okay, well, thank you so much for joining us today, Lucy. We'll go ahead and get started. I know that you have had some very deep personal experiences with a loved one in long-term care during the pandemic. So before we start to talk about what that time was like, I would love it if you could please just set the stage for us and tell us a little bit about your husband, Jack. How long were you married? What was Jack like as a person?

SPEAKER_03:

We were married for 32 years, and he was pretty quiet most of the time. I said he would probably have been diagnosed with ADHD, so he was on the move. And we did enjoy 20 years of retirement in Florida. Wow, that's a nice time. That was really nice. Yes, he loved it being down there for the weather and golf and missing the winter. And then probably around 2013, I noticed that he was having some memory issues. And so I was very fortunate to have a family that was very supportive and did not question that, approached it. positively and were always behind me with every step. And in 2018, we moved up here permanently into our condo. And I had that was in March and the beginning of June, I started Jack in daycare at a memory care facility in the mornings.

UNKNOWN:

And

SPEAKER_04:

Okay. Did that give you a little bit of a break then? Oh, tremendous. Yeah.

SPEAKER_03:

Yeah. Just some freedom to do what I wanted to do. He was there from like 8.30 to 12.30. We started with three mornings a week and then went five mornings. And I realized that I just needed to put him in there permanently. So he moved in permanently April of 2019. Okay. And of course, the transition is hard for everybody, but at least I was familiar with the place from daycare and he was familiar with it. And I knew the staff. And so I was as comfortable as I could be putting him in a facility. It's a hard decision. And everything went really well. up until the pandemic closed the facility. I visited Jack every day. I'd come about an hour before supper and helped him, which I learned later with activities of daily living, I would shave him and I cut his hair and picked up his room and helped him with whatever he needed there, brought treats for him because he loved chocolate. I talked to the nurses when I was there so I knew what his day had been like. I knew the aides and their names and they all loved him because a sense of dry humor that I didn't really know he had came out during dementia when the filters weren't there. So he was... In all respects, an easy dependent patient compared to a lot of them. And I enjoyed the time with him. And then I'd take him down to supper and then I'd leave when he was eating supper. So I saw him every day and spent probably an hour, an hour and a half with him every day and was a part of his life. At that point, I still took his clothes home and washed them and brought them back.

SPEAKER_04:

Wow, so you really were still a caregiver for him. Yes, I was. It sounds like you had been his caregiver for a number of years before he went in, and then you just needed some relief. You had him in the facility, but you were still very much his caregiver, and he was relying on you. Do you think that the facility was relying on you as well?

SPEAKER_03:

Oh, yeah. I mean, they appreciate family who comes and helps and doesn't just leave someone there. And yeah, they all knew me because he would walk around. Where's Lucy? Where's Lucy? So he always looked forward to my visits. I mean, he knew me to the very end. We had as good as it can get with Alzheimer's. Well, then March 13th, the facilities closed and it was supposed to be for like, what, six weeks. And I'm like, oh, well, okay, I can do it. And the director there at the time was wonderful. She called, it's a 40-bed facility, and she called every family and said, we're going to close tomorrow if you want to come in. She was outstanding, responded to anything that we had. Well, at that point when they closed, you could only do window visits, which did not work. They don't work with a dementia patient. They just want to know why you aren't coming in like you used to. And virtual visits are the same thing. I mean, they just do not relate. So I didn't really do very many of those. I depended on communication when the facility, which became non-existent pretty much because they were all busy. Any help that they got from family coming in was gone. And then they had all the precautions and everything that they were going through. So I would just drop a chocolate milkshake off at the door for Jack and they would give it to him. And I'd get periodic updates, but nothing like being there every day and talking to those who were taking care of him. And then it wasn't until July 1st that I could actually schedule an outside visit with him.

SPEAKER_04:

Wow, that's a long time. So that was from March to July. Yeah. So four months that you didn't get to see him really at all, except for maybe you did a couple of video visits that were

SPEAKER_03:

not very effective. A couple of video visits, but it just wasn't the same at all.

SPEAKER_04:

Then once the pandemic started and you found out you were not going to be able to go in for six weeks, what was the original plan? Did they say, you know, we'll set up visits for you to talk to Jack on the phone or via, you know, something virtual?

SPEAKER_03:

The first six weeks, of course, they extended it before that was over. There was not a lot of communication, but I knew that it was a strange, stressful situation for them. So, I mean, I have always said I would give them six weeks, the first six weeks to get the thing together. The part that bothered me is that they never did get it together after that. Okay.

SPEAKER_04:

So

SPEAKER_03:

even after six weeks, or the facility.

SPEAKER_04:

Okay. So did you get phone calls during, during that time or did they give you updates? Could you call them? I

SPEAKER_03:

called them. I mean, they had two nurses at that point who were very good with communicating. They used their own phones and, um, So I could keep in touch that way. I did not call a lot because I knew they were busy. But if I wanted to, or like I said, when I stopped by with a milkshake for him or whatever, you know, they would give me an update. And one of the nurses, I mean, she had the plan for which they did eventually from the beginning that she thought, okay, we can make a safe space and we'll work on being able to let family come in and visit in a safe space, but IDPH would not allow that.

SPEAKER_04:

Right. Okay.

SPEAKER_03:

They had foresight for that, but they were not able to enforce it.

SPEAKER_04:

So were you ever able to do, like, even try to do a virtual visit with Jack and he could see you on the screen? Tell me what that was like. What happened? Well,

SPEAKER_03:

they didn't have... The connections, they had an iPad, but they had one person. They didn't have extra staff to take care of that. So the one nurse, I did a couple of videos with, she called me with her own phone, which it's a small screen, which is hard for Jack to relate to. But I don't think a big screen would have made any difference because it's just... Why are you out there? When I go to the door, it's like, you know, or the window. When are you going to come in? And then the window visits, they said you couldn't open the window. That was per IDPH. So he's with the phone, I'm with the phone, and it's totally confusing.

SPEAKER_04:

He didn't understand why you were outside the window and not coming in. That's understandable. Yeah. Yeah, so that must have been really heartbreaking for you to want to have a little time with him in whatever way you could, but then he wasn't really able to join you in that.

SPEAKER_03:

No, he wasn't. I mean, because it was not the communication when I was there of speaking, which you're doing with window visits and virtual visits. It's the activities of daily living and just being with him. the personal touch. That's the big thing that they lose the ability to communicate well also. So it's the human interaction that is the basis that gives you that.

SPEAKER_04:

Yes. And I imagine it's really important to keep that up and to keep reinforcing it as somebody has dementia and it's important that you use the skills that you still have. And he wasn't able to do that during this timeframe. So then in the summertime, when it warmed up a little bit, were you able to have outside visits with him where you were in person? Yes.

SPEAKER_03:

I have to go back to in, I think it was the middle of May sometime in there. I was at the door one day giving him, delivering something whatever and I said I'll have to talk to the director and they said well the director isn't here any longer and I'm like uh what and I'm not exactly sure what happened I think it was a conflict between what was needed between the management company and the director and so they got a different director who was on staff there and um it did not work out well. I felt that the facility started to go downhill then and it was never the same, still is not the same. So that was really hard because there was no communication from the facility about changes in staffing, changes of the director and nursing changes. There was There were no more newsletters. There were no more, they used to put the menu out and had a monthly newsletter. So the communication really dropped off tremendously. And I did contact the management facility and I got a lot of talk, but very little follow through. So it was difficult because then that was truly just communicating. Then when I went to see Jack, July 1st was the first time that I had an outside visit with him. And it's summer. And for some reason, they decided we needed to wear gowns in case they'd come over to us, even though we were staying six feet apart. And so it was very uncomfortable for residents.

SPEAKER_02:

It was hot.

UNKNOWN:

Yeah.

SPEAKER_03:

Yeah, they did not make them wear gowns. The visitors did. And so that was very uncomfortable. First, I would bring something and they would let him eat it while I was sitting there talking to him. Later, it's like, oh, no, you can't do that. So that was the end of that. So then it's like, you know, I didn't have anything else to talk to him about, really. I could kind of do a body check. One day I noticed he had blood on his sock and he always wore shorts. That day he had on long pants and I lifted him up and I was like, can you have the nurse come out here? So she did. So even that stuff, which I would do while I was there with him prior to that, check up on care and whatever. I mean, you couldn't, that was all up to the nurse. Staff telling the nurse because the staff does the care. Right. So that was very frustrating. It was good to see him. He always liked to see me there. And then after he broke his hip, the recovery was difficult. And so a lot of times then they'd bring him out in wheelchairs and I, before when he had needed any physical therapy, I had come there for the appointments. So I knew what he was doing, which when they did start that, then I wasn't a part of those anymore either. Okay. So communication, since I was not in the facility, I didn't have it with staff. I didn't have it with RAs. I didn't have it with any therapy. So it was really like flying blind, like I had dropped him off there and left him. And I was just a visitor, which I didn't feel like just a visitor before they knew me.

SPEAKER_04:

Right, right. So what was going on with him? Were you able to find out what was wrong with his leg that day? Were there other things going on?

SPEAKER_03:

Well, evidently he had scraped his leg when he was using the walker. And we had had wound care before for a couple of things because their skin gets thin and they rub it against something and it they need wound care

SPEAKER_02:

or

SPEAKER_03:

watching. So I just, that time I said, you know, I know you could probably take care of this, but just call wound care. Cause I know you're busy. So they did. Okay. But it just changed the whole, it's hard enough to have someone in memory care and it just changed the whole thing because the only person I saw was, people I saw when we had visits outside, which had to be scheduled and I scheduled three a week for like half an hour. The only person I saw then was the person that brought him out and the person that came and took him back in. And I could ask to talk to somebody else, but, and I know the staffing changed a lot. It's kind of a revolving door, which it's been in a lot of places with RAs, which I understand. So it was just like I felt like I had, when I moved him in and I was there daily, I felt like I was still a part of his life. And I knew what was going on. And when it closed, it's like I lost my friendships, relationships there with the staff, as well as with Jack. And I was just out cold.

SPEAKER_04:

Yes, because you were going in daily. You knew some of the other residents, I'm sure, as well.

SPEAKER_03:

I mean, and that's people were out in common areas and I'd talk to them and you'd see the other families that were visiting and visit with them. And that was the frustrating. Another frustration is that I knew the families by sight there and their first names, but I had no way to contact them. So it was losing all those connections. contacts also.

SPEAKER_04:

Yes, that was sort of a social group in and of itself when you would go there. And it would have been nice for you to all be able to touch base with each other during that time and check in and see how everybody was doing and find out how the residents were doing. But it sounds like you weren't able to do that. No, not at all. And the facility wasn't able to help with that, unfortunately, huh?

SPEAKER_03:

No, and I don't know if It was just disorganized and I don't know if it was privacy concerns or it just, I mean, I know it was a whole new situation from them also. I don't think they got a lot of help from the management company and everyone was struggling, but with the change of manager, change of nurses, it was all different.

SPEAKER_04:

Yes, that's got to be really hard to figure out how to navigate that. So let's see. So then we've gone through summer. It was really hot to have those visits outside. Those weren't going well. What happened next?

SPEAKER_03:

And those periodically stopped if they followed the rules when someone tested positive, staff or resident, then they had to stop the outside visits too. So they were not consistent all the time. Then in the last week of October, I got a call in the morning that one of the residents had tested positive for COVID. And then I got a call in the afternoon that Jack had tested positive. I think that was October 26. And COVID went through the facility. to pretty much the whole facility. There were just a few that didn't get COVID.

SPEAKER_04:

Wow. How were you feeling when you got that phone call?

SPEAKER_03:

Well, my heart kind of dropped because I had said from the beginning, I mean, Jack was prone to pneumonia. He'd been in the hospital for pneumonia a couple of times before. I didn't know what to do. There was nothing I could do. Then that was, I think, Monday the 26th and the 31st on Halloween, I got a call that Jack's O2 levels had dropped. And so they wanted to send him to the hospital. And I'm like, well, do I want to do that or not? And I called my niece who's a nurse and she says, yeah, that's low. I says, okay. So they sent him to the hospital and, you know, there were no visitors there either. It was trying to get calls and I know they're busy and they're telling me, well, to leave the oxygen tube in, we have to put him in restraint. Yeah, I know. Well, I don't like that. What do I do? Well, then finally, I think that was Saturday he went in. It was like the next Thursday they called and said that they wanted me to consider palliative care. And I said, no, I says, we're just hospice care. Because I had said at the very beginning, probably about six, eight weeks in, when I started sending letters to the head of the health department for our county, I said, he has dementia. I would rather spend a week with him and have him get COVID and pass away because I've had that week than the whole lost time. And that was only like eight weeks at that time. And we're up to eight months. So I said that at eight weeks, you know, I can't ask to keep him alive through this because he doesn't have quality of life anyway. So now we have COVID and I'm like, well, we're down to hospice care. So the good part of that was that when I talked to the palliative care team, and told him I wanted hospice. I said, the other thing I would like is one visit with him in the hospital, a compassionate care visit, because the facility was not giving compassionate care visits unless it was end-of-life issues up to that point. So they did let me have one hour with him on Saturday, and they had disconnected everything because he was on hospice. Okay. The nurse downed me up and everything. And I went in and he got a big smile on his face and held my hand the whole time. And then I knew, okay, I'm going to have to go. It's an hour. They didn't come in, but I knew I'd have to go. So it

SPEAKER_04:

was very different. That was the first time you had touched him, right? In over a year. Well, in eight months. In eight months. Yes. Okay. That was the first time you guys were really reunited after eight months.

SPEAKER_03:

Yes, it was the first time we were alone in the room together and close. Granted, I had mask and shield and everything else on, but it was still, he knew me when I walked in and we had the time together.

SPEAKER_04:

Oh, good.

SPEAKER_03:

And then on, that was Saturday and Monday, he was transferred back to his facility on hospice. And at this point, Then, oh, you can come in whenever you want. We'll give you a meal if you want.

SPEAKER_04:

Okay. So once he was on hospice, you were able to get in to see him more regularly again.

SPEAKER_03:

That was the first time. And that was on a Monday. He was transferred there. Our son and his family came down on Tuesday and we all went in. But since he had been disconnected from everything else, giving him oxygen or fluids or whatever. On Thursday, by the time he got there on Monday, he was not responsive. He was not eating. And so it was good to have the time, but it doesn't make up for the eight months that were lost either. Right. And then he passed away on Friday the 13th. Okay. Were you able to be with him then? Yes, I could come as much as I wanted on those days, which I did not go. I still went home and went there part of the time during the day because, as I said, he was not

SPEAKER_04:

responsive.

SPEAKER_03:

He was not eating even. I mean, tried to feed him a few things. Well, just the liquids or whatever that they give him for a couple of days. And then when he did pass away, his son and our son and I did get to sit with him for an hour after he passed away before they came. Okay. All right.

SPEAKER_04:

But you really, that time was too late, too little, too late for

SPEAKER_03:

you. It was too little, too late. There was, the only real communication thing that I felt any contact was the hour, which I was very thankful I had with him in the hospital when he was still alert because far too many people missed even that. Yeah,

SPEAKER_04:

that's true. But it wasn't fair. It wasn't what either of you would have wanted. And that had to be hard.

SPEAKER_03:

Yes, it was. My salvation through that time was when I found Caregivers for Compromise and worked with them and all people understanding what the issues are and what's going on. And I mean, we and I continued writing to legislators. There was IDPH, but no one listened. I mean, it took forever to even get someone to listen. And In long-term care, it wasn't really the feel-good moments that they made it out to be.

SPEAKER_04:

Yes, especially it sounds like for people who had any kind of memory loss or dementia or Alzheimer's, it was just an incredibly difficult situation. And there was no plan in place or accommodations that could maybe account for that. No. No,

SPEAKER_02:

there wasn't any.

SPEAKER_03:

My feeling is if you're in a nursing home or you have dementia, any type of dementia, your quality of life has declined considerably already. So any day that you can have with them is important because life is not going to get any better. So, I mean, I got down to, well, what are we saving them for? Are we just saving them so we have fewer numbers? And it made it keeping those who visited regularly, we call them, ended up with essential caregivers, out of the facilities only made it harder for the staff because they had no help. There was also no accountability because no one was going in and out.

SPEAKER_04:

But I understand that at least in Illinois, you guys who are doing the advocacy were able to get some changes, some changes made, and there's now new policies in place, new guidelines, I guess, new guidance in place for long-term care facilities to allow a caregiver into the long-term care facility, regardless of COVID status or any kind of lockdown that there might be. So that's a really big win. Oh,

SPEAKER_03:

it is a big win, yes. And I think those who have moved loved ones into facilities since Illinois caregivers have advocated and made kept advocating and made changes so that changes were made along the way. It's hard to understand what it was like for those who were already there at the beginning.

SPEAKER_00:

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. In this age stage, we ask Lucy what needs to be improved in long-term care and what she has done to help make that happen. Let's listen in.

SPEAKER_01:

All right. Thank you, Gretchen. And well, first and foremost, Lucy, I just want to thank you for sharing your story. It does take a lot of courage to talk about something like this. So I commend you on that. And of course, and then like Gretchen said previously, We do really hope that this will bring about some change. So we are really grateful for your willingness to speak. And now that we've learned about you and what happened, we're going to pivot, like Gretchen said, into our age stage segment. So this segment is going to essentially give you a platform to speak to the aging community on any topic, that you wish to shine a light on. So this can be something in relation to the story you just told us or anything else that you would like others to know about. Think of it as a message that you would really like to give others. So with that said, my question for you is if you could say something to all the older adults, caregivers and their families that are listening in, what would it be? Reach out

SPEAKER_03:

for help. because you can't do it alone. I was fortunate because I was 11 years younger than Jack, but I still know how wearing it is. And you think you can handle it and you think you can handle it and it goes day by day a little worse. And if you don't have family members or friends who come in and spend a whole day, I was fortunate, our kids would visit us in Florida and stay for a week at a time. So they really got the true picture of what was going on. Someone with dementia will sound normal on the phone far longer than they do in person. You have to spend an extended amount of time in person to really understand what's going on. And it was hard to put Jack in care, but I had read enough that frequently the caregiver will pass away before the loved one and then they're going to be in a facility anyway. So you have to take care of yourself even when they're still at home I was very thankful that I could put Jack in daycare because that gave me half a day of my own to be a normal life. And the other, I could be home and find a support group. Don't give up asking questions or keep thinking that you can handle it because it is exhausting. And the other thing in general, I don't know where they'll go with Alzheimer's treatments. I think it's going to be a while, but the things that they keep saying are stay active, have social interaction, learn new things, eat well. They're really important. And try to stay active. And one thing aside from that, which I have felt is that There are a lot of people who retire and have quite a few years in retirement. And if you're healthy at all, I think we need some system that people can go to and you can see the volunteer social opportunities, whether it's volunteer, whether it's active in this group, because they're scattered. You really have to search for them. But I think... Our retired population is sadly underused with volunteering and helping others. To me, life has to be more than just taking care of myself and having fun.

SPEAKER_01:

Well, that was all very, very well said. I really like how you touched on caregivers and caregiver support because that's something that we advocate for a lot here at Age Guide. So we do have a lot of caregiver support services, and we do really want people to utilize them because they're out there. And most of the time, people just don't realize that there is something that you can go to for support if you need it. So those were very wise words. My next question for you, I just want to ask you, because you talked about how the pandemic and how COVID really exacerbated a lot of the issues. Yes, they were there before, but the pandemic really made them much more exposed and much larger. So how has COVID and the pandemic changed your perspective on aging or how has it changed your perspective on caregiving? I think

SPEAKER_03:

caregiving, the whole aspect of long-term care From staffing, my feeling is they need some education, and it's unfortunate they reduced the education that they needed to get more workforce. They need education, and if they're willing to do that job 40 hours a week, they should be paid a living wage and given the hours and benefits so they do not have to go to two or three facilities. And we have to increase the numbers of people required or the number of hours or however they want to do it. In education, preschool through elementary grades, at least to some extent, there's a teacher-student ratio. And something needs to be done with that. the staff is not overworked and they can learn the job. Infection control obviously was sorely lacking with the way everything spread. And there has to be accountability in the facilities from director, manager to staff. They need a whole real organization there. And I think they need when you come to dementia, they need a regular levels of care instead of specific to each facility and how you're going to do it.

SPEAKER_01:

Okay, well, that was very, very great information. That's a really good advocacy effort that Age Guide can actually take down. In terms of long-term care, there are so many different advocacy efforts that we can go down through, and we really do just want to create change in any way, in all the ways that you said, in all additional ways. So we thank you for doing your advocacy work, and then hopefully we can aid you in that in the future. but I know we're getting close to our timeframe. So I will go ahead and turn it back over to Gretchen.

SPEAKER_04:

Okay, thank you. Thank you, Lucy. And thank you, Caitlin, for those good questions. Lucy, that was an excellent age stage. I'm so excited for us to be able to air this. All the things that you touched on are actually in our priorities for 2022. We set our legislative priorities every year. We have a committee that works on that with representatives from all of our counties. And we're working on caregiver. We're working on rebalancing long-term care. That's the word that we're using for spreading out services beyond just facilities. But thinking about long-term care is more of a continuum that starts when people are still at home and they have a caregiver in the community and trying to stretch that time out and support that caregiver as much as possible. And then long-term care should just be an extension of that where the caregiver can continue to be involved and can continue to get access and all the community supports that could be in place to help older adults to age well. So that's what we're talking about in our priorities as well. And then supporting essential services that include all of those kinds of home and community-based services that I talked about. So those three are our pillars for this year. So it's really cool that you talked about those things in your comments as well. And I'm just excited to hear from you and hopefully we'll be able to stay connected because I think we'll have more advocacy opportunities at Age Guide in the future where someone like you, if you're interested, could get involved and help us to push these things to the forefront.

SPEAKER_03:

And one more thing, any organizations that advocate for these changes, if they can come together, the bigger the voice, because I know what we ran into is that the organizations who lobby for the owners of the facility have a lot of money and a lot of power. Yes, they do. Unfortunately. Yeah, they do. So anybody that can support that and get the public to support it and media is going to be very helpful.

SPEAKER_00:

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. Call our offices at 630-293-5990. 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.