Behind Closed Doors: A Sister's Caregiving Experience During Lockdown

The first in a series about the Long-Term Care crisis, this episode features an interview with Kathy, who was deeply involved in caring for her brother, Jack, while he was in a long-term care facility. This is the story of what happened during the COVID-19 lockdown. Kathy shares what she and Jack experienced, what she saw and couldn’t see, and what happened as a result. Kathy’s story is just one of the millions out there of families who faced separation during the COVID-19 lockdown.  Hear what Kathy took away from the experience and how she is working to bring about change. #theageguidepodcast  #caregiving #COVID-19 #pandemic #longtermcare #advocacy

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Transcript

SPEAKER_00: 0:01

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 between Gretchen, who oversees Age Guide's advocacy efforts, and Kathy, who is a caregiver for her brother who was in long-term care during the lockdowns. Let's send it to Gretchen and hear Kathy's story.

SPEAKER_02: 1:04

Well, thank you so much for being with us today, Kathy. I'm so excited to talk with you and hear your story. And for you to be able to share that story with the world, I think is so important. I know that you have had a very deep personal experience with a loved one in long-term care during the pandemic. It was a really hard time to have a loved one away from you, especially someone who was so vulnerable. at that time. So before he went into the nursing home, you were already in some ways a caregiver for him, weren't you?

SPEAKER_03: 1:38

Yeah, he did need some extra help. I have to admit, he did live in a group home. So I was still going to the group home, maybe twice a week I would go there. But he was very mobile then. He could get around on his own. He didn't need quite as much help like with going to the bathroom. Once you can't walk, things really get bad, but he was able to get around more on his own before he went there.

SPEAKER_02: 2:04

Okay. He was more independent, but you had been a caregiver for him for a number of years then, just in terms of checking in on him and making sure that his care was appropriate. Can you paint a picture for us a little bit about what that was like pre-pandemic and how you would still go in and you would take him food? I

SPEAKER_03: 2:23

went almost like five, sometimes six days a week. I didn't go on Sunday because a lot of times I went to my in-laws house on Sunday. Now, I would try to go there before 1.30, if I could even make it before 1.30, because he was really tired by 1.30. But I would always go. I would try to go in and take him outside because even pre-pandemic, no one took him outside. So the only way to get fresh air is if I took him. They never allowed anyone outside. A lot of times, even to take him out, I'd say, could someone please change him before I go out and And they'd say, well, you have to wait for whatever. And a lot of times I end up taking them out wet. You

SPEAKER_02: 3:03

would have to ask someone to change him. Oh,

SPEAKER_03: 3:06

yeah, definitely. And they'd have like one person, like they'd have a nurse and they'd have one aide. And the one day I was there, I had no idea. I know she was very busy. One aide. And she said, I've been in this room for 28 minutes. I've been in this room. Well, there's three adults. And she said, I don't know what it was, 20 minutes I was there, but she had 28 people, 28 people. She said, I don't have time to spend 20 minutes in one room. So I have 28 people. And then the same people that are changing people are also serving food at every meal. So they didn't have like staff to like work in the kitchen. And then the kitchen people would like kind of dish out the food on the plates. But then the person who delivered the plate to the table was the same people that also changed people.

SPEAKER_02: 4:01

Wow. So they were already short on staffing. Things were already not looking so good. And you had to be there.

SPEAKER_03: 4:09

I'm sure it was worse after a pandemic. But it's hard to get people to work in that situation. Right.

SPEAKER_02: 4:15

It's already hard enough. And then I think made it even harder. And you were in there all the time. So this is a resident whose family is very involved and engaged. And the staff know that you're going to be showing up every day. And they also probably relied on you a bit to help them to take care of Jack.

SPEAKER_03: 4:35

Yeah, I would go in there. There were days I would go in there and there was no sheets at his bed even. The bed was just this rubber bed like. And I'd have to like find the cart. And the nurses would get mad at me because I would take the sheet off the cart. And I said, well, is it okay? Could you just get me the sheet? I'll put it on myself. You have to get a sheet, a blanket, pillowcase. I think they wanted to wash it down, let's say wash down the bed. But then they got busy and they would forget all about it. And I'm like, Jack, when did they do this? It was like real early in the morning and no one never came back later. So there were so many things that I would not recommend someone going. If they could do anything, they had to go. In fact, I told my daughter, please don't let me go to a place like that. That was never the plan. It was always supposed to be temporary. So

SPEAKER_02: 5:28

before we start to talk about what that time was like, can you please just set the stage for us? We would love to just hear a little bit about who Jack was and what your relationship was like with him.

SPEAKER_03: 5:40

It was just me and my brother. I don't have any other siblings, so he's the only one. Both my parents are gone now. He really just went to the nursing home to get stronger after pneumonia, and he ended up in the nursing home for physical therapy. But he got stronger, but right before he was released, he started bawling, and they thought that he was kind of making it up, that he wanted attention. It was nothing like that. And as it turned out, after about six weeks, I ended up taking him to the hospital. And I said, I want to know why he's not walking all of a sudden. And as it turned out, he had broken discs in the back of his neck.

SPEAKER_02: 6:21

Did he have a diagnosis when he went into the facility?

SPEAKER_03: 6:24

He did have a mental health diagnosis, yes. And then after he had the spinal stenosis, And then that's what caused him to stop walking with a broken disc. And they did a very involved surgery where they removed the discs and fused them together. And he was supposed to get a lot of physical therapy. And he really didn't there. It was very, very minimal. And then some of them, I begged, I remember begging. He was on psych medication, too, for the mental health. So I asked them if they could please... give the psych drugs after the therapy. A lot of times they would do therapy at like 6.30 at night for like 15 minutes. It was not very much at all. I mean, he did have some dementia, I have to admit, but the idea of COVID, I don't think he really understood. Once the COVID hit, the biggest concern was everything shut down. After a while, they did some outdoor visits. maybe once a week for a while when the weather was warm. But the part that was bad, they didn't have any place else to do it other than this one area on a porch. And there were so many trucks. I think the frustrating part for him is he didn't understand why all of a sudden it was like this. Like before he used to come in and I'd always, you know, bring him something to eat, like usually McDonald's or something like that. Well, they didn't allow him to eat in front of me anymore outside because everybody was masked up. It was frustrating because I couldn't hear him with the mask on and the trucks going and he couldn't hear me. So the entire time I could, he was trying to come closer to me, but they kept wheeling him back because they wanted, you know, the distance, which I understood, but I didn't understand why it had to be done there. And they never allowed me to like take him for a walk. you know, or anything like that. And we had to stay like right there. And I just think it was such a big change and they didn't allow anyone to leave the room. It was three people to a room and it was probably the size of a regular bedroom. It was three people to a room. So he wasn't getting any exercise after a while because you could only, his wheelchair could only go a couple of feet this way or a couple of feet this way. And then as I call, they didn't have, after the outdoor visits once a week stopped, they set up some calls with people, but they were only once a week. And sometimes they'd have like audio problems where they'd have to cancel the call or they would bring the phone in and he'd be sound asleep. So they would hold the phone up and they'd say, say hi to your sister. And he'd be like, you know, all groggy. And I'd say, you know, could we please do this in the morning? You know, cause he'd be more tired in the afternoon. Oh no, these have to be done in the afternoon. So I just wish they could design places with just a little

SPEAKER_02: 9:30

bit more space. Yeah, the social isolation and the lack of being outside, having contact with other people, no activities, nothing. So when did the lockdown start?

SPEAKER_03: 9:44

I think it started like, I remember like March 15th, I think of, was it 2020? March 15th of 2020. And no, they shut everything down at the nursing home too. How did you find out? They had called me, I think, that week to let me know that everything was, no more visitors. I forget. Eventually, it took a while to get the visits going too, the outdoor visits. It was outdoor first, but it took a while to get that going. It really wasn't productive, you know, the way it was set up. He might have been outside, like, 10 times the whole year for like 15 minutes. Wow.

SPEAKER_02: 10:26

Even in the summertime, even when it was nice out? It

SPEAKER_03: 10:29

was very short, very short. But I think the hardest part was when he needed new teeth and I think they had a hard time getting a dentist in or something. Then he eventually lost his swallow when he went in hospice. So They told me that if he went on hospice, he could eat anything he wanted, but that wasn't true because they said that he couldn't swallow after a while. So that was really hard. My daughter and I were making a lot of like mushed up foods to bring there then. It was just a drastic, with the COVID, it was just a drastic change. I was very abrupt and I'm not sure he understood what was going on because I could tell by the way, in the beginning, how he looked at me, he was mad at me. I didn't know what to do. Even if I had a bag, like Donald's, one gentleman would bring it inside. So he would see the bag, and he knew he couldn't have it until after we were done. I'd say, well, Jack, I'm only going to be here for a few minutes. And he was eyeing the bag on the receptionist's desk, and we were just right outside the door. So it was just not that easy. But there are a lot of things there with overall communication that were not good. It just wasn't handled well. But it might have been handled the best it could have been handled at the time, but it wasn't handled well for him because he was the one who, even up to the day before he died, I still remember I met this one. It was, I think, like a mental health person. I'm not sure what his name was. I forget who I met in the... An ombudsman? That I met in the doorway. He worked for the nursing home, I remember, and I introduced myself. And I said, do you know my brother? And he said, oh, yeah, he just asked me for pizza yesterday. He was a psychologist. He was a psychologist. And he said, he just asked me for pizza yesterday. And I was laughing. But see, when they finally let me in, it had been... He was on hospice, and I only saw him twice. Once before he went on hospice and then five weeks went by and I had to make an appointment the day he died. And so he was asking for food even the day he died and he couldn't have it. It

SPEAKER_02: 12:50

had to be so frustrating. So you mentioned kind of what happened towards the end of his time there. Can you share a little bit about what was going on with Jack and in the facility once he went into hospice?

SPEAKER_03: 13:05

He had gotten another, he got like, I'd say every year, almost while I was there, maybe twice a year, he would catch some kind of an infection. And the last time, every time he got an infection there, it would take a longer time to kind of come back from it. That's how I can describe it. Well, the last time he got this really bad infection, he really never came back stronger from it. And since he wasn't getting stronger from it and the swallow was getting worse, they advised to go on hospice. And they said, oh, since he really likes to eat that way, he can eat whatever he wants. And it really never happened. But they did hire, I guess, this hospice company. And the nurse seemed very nice that they had. But she was only allowed to go there once a week for 40 minutes. So here I couldn't go in. They wouldn't let me in, but they would allow a hospice nurse for 40 minutes a week. And she was very busy. You know, she had so many people too. And I did like her. At least I did get a call from her. You know, I'd call her. She would talk to me. I knew something was up when she had called me and said, today he's not responding to me. Normally we talk and He's not responding at all. And I said, well, she says, did you get an appointment? I said, well, I'm supposed to go Friday. They're letting me come Friday. And she says, no, I would come sooner if I were you. So I called back and I said, I need to come today from the way this hospice nurse described it. And they did let me in that day, but I couldn't stay. Like they let me stay about a half hour. They let me stay about a half hour. They had to take the other two people out of the room. because of, like, COVID, they didn't want them to be exposed to me. You know, and I was in a gown. They put me in a gown and everything. But he was, like, just gasping for air. And after about a half hour, like, they did suction him. They did suction him. They did come in and suction him. But it filled up so fast. And they said after a half hour, they wanted to bring these other two people back in the room. And they said, we can reschedule with you tomorrow. You have to go now. And I said, really? He said, yes, I'll get you an appointment for tomorrow, I promise. And so we came downstairs and he let me know the next day. And they were going to let me come in the morning then, like 11 o'clock in the morning. But he was already gone by, it was probably like 10 after 7 that night. Like I was there till about 5.30 maybe. And he was already gone by 7.30. I did call. the hospice company, and they did get a priest in there, which was nice. I got the last rites. They wouldn't even hear that. I said, well, you know, my daughter was with me. And we said, when did this start? Because it was this, you know, breathing. He said, oh, this just started today. This just started today. Well, here, they never called and told me. Here was the hospice nurse that called and told me. And even like after he died, the one nurse who was on staff there died. That's very nice. She called me later that night and she said she was sorry. Other than that, there was nobody from the nursing home, no doctor that called, nothing. No one from the facility, like I heard this happened or it was just another person that died.

SPEAKER_02: 16:40

You didn't get to be with him at the end? No, he died all by himself. He was all by himself when he died. And you were at home by yourself worrying?

SPEAKER_03: 16:52

Yeah, I knew it wasn't good, but I didn't know that it was going to happen that night. I mean, I could tell this wasn't him because the nurse, it was, he would say, open your eyes, Jack, open your eyes. And he'd be like, huh, huh, huh. He wasn't opening his eyes. But I knew he could hear me though, because I could see his chest like going up and down. And I was surprised they did let me touch him. I was surprised because the guy was in the hallway and I kept apologizing to him. I was like tapping his chest and he did seem to calm down a little bit. with this heavy breathing. But no, they would not let me stay. I definitely had to go. And oh, yeah, it's true. He came in. He said, you have two minutes, two minutes and you have to go two more minutes. That's it. And I think he felt pressured to get these other two people back in the room. But It should have been set up better, like another place where you could go and just stay with someone while they're going through this or when the priest came. It was just a very, okay, like time's up.

SPEAKER_02: 17:57

Did you have a sense that this was going to be the end? Did you feel like you were saying goodbye?

SPEAKER_03: 18:02

Actually, I didn't because my brother overall had several scares in the past and he always kind of came back. But I never saw him where he never opened his eyes. So I knew it was close, but I did not know it was that night at all. I really did. I really thought I was coming back the next day and no way of knowing it was that night. Although the hospice nurse did say to me, I should have really been more clued in. She said, I would get there today. Don't wait till Friday. She did tell me that. But see, no one, like you would think the doctor would tell me or There was no call from anyone there. They had their own doctors there, their own nurse there. I think once it gets turned over to hospice, I think they kind of like, it's kind of up to them to handle it. Like they kind of removed themselves from it.

SPEAKER_02: 18:56

I'm sure. I'm sure it's hard for you to tell this story too. So I really appreciate you sharing this because that is a sad, sad way to say goodbye. And in a way you didn't really get to say goodbye because you didn't know that it was goodbye.

SPEAKER_03: 19:10

No, I really didn't. And even, like, even when I found out, I walked downstairs and told my husband, you know, like, Jack's gone. And then my husband said, really? Like, he always, like, he always seems to come back all the time. And this time he didn't. But it's a truth, though.

SPEAKER_02: 19:30

No, I appreciate you sharing your heart and your feelings on this. Because you went through a lot with... with Jack. I really thank you for sharing this. It's a hard story to tell. We are the Area Agency on Aging for Northeastern Illinois for the collar counties around Cook County. And we provide a lot of community-based services. We do fund the ombudsman program to those folks you talked about who go into and investigate nursing home complaints and nursing home issues. And they check to make sure that rules are being followed and that people's rights are being maintained in the nursing homes. But a lot of our services focus on keeping people at home and in the community as long as it's safe and as long as that's possible. So we're hoping that by talking to you and people who have had these experiences with long-term care, that we can let everybody know what was going on. I mean, I think a lot of people heard about the deaths in the nursing homes and people dying of COVID. But the other thing that was going on was that people were locked up in their rooms for months and months on end, like you said, and they weren't getting out. And that story hasn't really been told in the media quite as much. But this is an opportunity right now where people are wondering and people are listening to these stories around COVID. So we want to be able to share it while the pandemic is still going on and still fresh in people's minds that this happened. And people need to know about Jack and what happened to Jack so that it doesn't happen again to somebody else. Because we need to be able to change some policies and change some laws about what happens. And like you said, there were some changes. They did change the visitation policy. There's new legislation that says that nursing homes must be open to visitation at all times. that residents have the right to have visitors regardless of what the public health issues are at the time. So that is a change. I worked really hard on that. You did. That's awesome. We worked

SPEAKER_03: 21:33

very hard to get that changed.

SPEAKER_00: 21:36

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. This week's topic is the importance of advocating for older adults. Kathy is a member of the group Caregivers for Compromise, a coalition working towards alternative solutions to the isolation of residents in long-term care facilities as a response to COVID-19. Together, they helped bring about new nursing home guidelines. In November of 2021, the Centers for Medicare and Medicaid Services issued a new visitation guideline that stated, visitation is allowed for all residents at all times, regardless of outbreak status, as long as the corporate principles of infection prevention and control are utilized to prevent the spread of COVID-19. Let's send it back to Caitlin, Age Guide's own advocacy and planning coordinator, and see what Kathy and her daughter Katie have to say on their own age stage. Let's listen in.

SPEAKER_01: 22:45

So first of all, I just want to say thank you, Kathy, for sharing your story. I agree with Gretchen. This is something that we really really want to get out there and hopefully not just bring awareness to but try and make some changes around so with that said my question for you is if you could say anything to all the older adults caregivers and their families that are listening what would that be oh to never

SPEAKER_03: 23:14

stop advocating for them no matter what to always speak up for them if they need help don't I was afraid sometimes, but don't ever be afraid at this point. Just speak up for them if they need help. That's what I would like to say. Never give up. So I think some people do. Because even when I was there before the pandemic, there weren't a lot of visitors. There really weren't. Not when I was there anyway. There was a limited amount. But they really have to be involved with their family. They can't just assume things are being done. Don't ever assume because it's not. There are things that I saw I wish I could have unseen. Trust me. So to always, and I haven't been just with my brother much because I see a lot of things go on. You just have to, you have to be there. You have to have someone in the family to be involved, somebody. You can't just say, you know, they're there now. What else? They're well taken care of. Like people think this, this is like this place where they're at and they're well taken care of. It's not true. It's just not true. You have to be there.

SPEAKER_01: 24:26

Along those same lines, you were talking about how the family should advocate for their loved ones and their residents. Is there any advice that you have for the residents themselves on how they can advocate for themselves within these nursing homes and long-term care facilities?

SPEAKER_03: 24:44

Oh, it's a hard one because some people, like I said, are afraid to ask and sometimes they get complacent. Like my brother, I know, did get complacent. Tell them not to be complacent. Like I probably get to a point where it's like, well, if they want to, they'll do it. If they don't want to, they won't do it. And I don't think that's the case. I think they just start their day and if they get to you, they get to you. It's not like they don't want to. They just don't get to you that day sometimes. But ask them not to be complacent, to keep on it, to even talk to the social worker and hopefully... If that doesn't work, you know, have the family talk to social work too. And I think the more people that are involved after a while, things will hopefully get done. But I think, like I said, with my brother, it got to be a point of, that's just, this is just the way it is. Like, I don't think people should really ever accept that. Like even the one nurse I remember, he was a nice nurse too, this one guy. And I'd say, you know, I know he needs a shower. You know, everyone in the room needs a shower. You know, it really smells. He would say, you know, when I first get here, it does smell. But after a while, I get used to it. Well, you shouldn't get used to it. You shouldn't have to get used to it. You'd be surprised you're here a while, you don't notice it. I'm thinking, well, no. I don't think you should ever, like... just think, oh, this is the way it is. And that's how my brother was. You know, like, oh, well, that's how he was. As far as if they have access to a phone, not everybody does in a nursing home, but if they do have access to a phone, they could contact their ombudsman. Not everyone has access to a computer in a nursing home or access to a phone. That's the problem. It's really easy to say contact your ombudsman. On their floor, They had two phones, one for each side. And so it was like 60 people sharing two phones. There was no computer available. Not everyone has access to a computer or even knows how to work a computer that's older. So if they have to tell a family member, I need you to contact me about some men. I liked the idea with that law for one person or two people to be appointed at any time to come in. I really liked that idea because without it, there's no way of knowing what's really going on. I think a lot of people going into a nursing home don't even, I didn't even know what an ombudsman was until recently. But how is another senior person supposed to know about it?

SPEAKER_01: 27:26

Right. And that exactly is the point of the ombudsman. They really are advocates. for residents and for their families. So that is a very good point. I know we're getting a little bit of a crunch on time, but I do want to invite Katie into the conversation. Katie, if there's something that you would like to say to everyone out there, older adults, caregivers, or their families, what would be your one message? I would

SPEAKER_03: 27:54

definitely mirror what my mom says and be a fearless advocate For those who are in your family, those who might be rooming with one of your family members, or anyone in your community, we really need to focus on the quality of life for everyone around us. There's absolutely no reason why what happened in March should happen ever again. People should not be dying alone of COVID or anything else at this point.

SPEAKER_00: 28:24

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.