Kim Terry: Caring for Caregivers

Transcript: Kim Terry – Caring for Caregivers (Episode 82) 

Kay Coughlin: Hi there. I’m your host, Kay Coughlin, and you are listening to From One Caregiver to Another. I am a life coach for family caregivers and sandwich family caregivers like me, who want to get some rest and feel less alone. I taught myself how to navigate all of my responsibilities and get into the mindset I need so that I can set boundaries, have self-compassion and prioritize myself. So that my needs get met, too. And that’s what I help my clients do. And if we can do it, I know it’s possible for you too.

Hey there everybody. My guest today on the podcast is Kim Terry, who is the executive director of Nancy’s House. I am so excited to have Kim here with me. I’m going to give you Kim’s bio here in a second, but what I want to let you know is that Kim and I have become friends.

I love her heart. I love all of the work that Kim is doing in the world. She is an extraordinary woman. If you’re listening to this, I just, I think you’re really lucky that you can get to know her.

Kim began serving as the executive director of Nancy’s House back in July of 2021. We are recording this in June of 2022. So she’s been there almost a year now. That’s hard to believe. She joined Nancy’s House as a research intern way back in 2014. And then she became a board member in June of 2015 while finishing up her master’s program, get this her master’s in international peace and conflict resolution. Totally amazing.

Kim is currently completing her doctorate in organizational leadership and she continues to be an education and strategic consultant for large healthcare organizations in the learning and technology space, which means Kim is actually the part-time executive director of Nancy’s House. Kim’s background is in case management, vocational training and job coaching with persons who are living with a disability or significant mental health issues.

Welcome to the podcast, Kim.

Kim Terry: Thank you. Kay. Happy to be here.

KC: I can’t even tell you how delighted I am to have you on the podcast. I’ve met a lot of wonderful people in, in my world, working with family caregivers, and you are definitely at the top of my list. We are like-minded. Yes. And we think about family caregivers in much the same way, which I know people will hear as they listen to this.

Look from my own work with family caregivers, I think that someone who has studied peace and conflict resolution is the perfect person to be an advocate for, and eventually executive director at, Nancy’s House.

Nancy’s House is based out of Philadelphia. Is that right? And have you had a geographic expansion or a change in the geography that you serve in the last year or so?

KT: Because it’s called Nancy’s House. I think people think we are located at a specific house and that’s where we do our work. However, Nancy’s House is a mobile program, so we normally are at resort style locations. We can travel. The facilitators and massage therapists and everything can travel. So we’ve done stuff even as far as Raleigh, North Carolina. We actually have a Nancy’s House sort of established in North Carolina as well as in Pennsylvania, but we work all up and down the east coast right now. But we can go anywhere, which is cool.

KC: Can you describe a little bit for us about what a Nancy’s House retreat actually looks like?

KT: We have one day retreats, but our three day retreats are basically the cornerstone of our services and what we’re most well-known for. You have three days and two nights at a luxurious location where you have your own bedroom and bathroom. The mandatory things are that you sleep and eat. Other than that, everything else is optional, but we do offer a one hour massage during your stay, a Swedish massage during your stay.

We have yoga classes and walks. We offer meditation classes as well as stress management. We have nightly support groups and, and it’s more like after dinner conversation. So it’s not a formal support group situation, but that’s normally what those after dinner talks turn into. We have licensed staff available for the duration of the stay and all of your meals are served to you.

So you don’t have to prepare anything. You don’t have to clean up anything and you have your own space to go back to when you just want to be by yourself. And it is pretty extraordinary the way the program is put together and it’s put together based on research about sleep and what people need. And we’ve seen through the data that it has a long-term impact on people and how they feel like they are better caregivers.

They come away with skills that help them invest in their self-care. We usually check with people. At the minimum three months after they’re gone and their lives are forever changed as a result of being a part of these retreats, whether they’re investing in doing walking meditations or realizing that, hey, I need a break and it’s OK for me to do something for myself.

KC: I love that there is data to support everything that you do and your methodologies at Nancy’s House. It’s one of the things I like the most about Nancy’s House. I, myself, uh, I’m a big fan of data. You know, I often will cite the 2020 caregiver survey from AARP and the National Alliance for Caregiving that says that we have 53 million family caregivers in the United States.

You know, and I ran the numbers on that. That’s actually about 21% of the adult population of the United States identifies as a family caregiver.

Uh, and if anyone is listening to this and wants to donate to Nancy’s House to support the work, you can absolutely do that too. I, myself am a donor to Nancy’s House.

Can you tell me what’s one memorable moment that you’ve had while working with a family caregiver through Nancy’s House?

KT: This is another great thing about Nancy’s House retreats that we, we make sure there’s no judgment. And people sometimes are afraid to say “I’m angry. I’m upset. I don’t want to do this anymore because it just sounds like that’s not the right thing to say.” You know, and before people start on the retreat, when they come in and after everybody gets checked in and everything, we take folks aside for individual sessions and you can have a session anytime, but this is the, the opening session.

And we just talk to you about your situation and what you want to get out of your time there for the next couple of days. And I had someone, and I loved that they valued that and they understood that this was a safe space, that was just tired and done and wanted to leave. “I don’t want to do this anymore. I’ve had it up to here,” and there was so much pain and anger upon them being there. Glad that they took this time, recognizing, “I know I need this time away.”

And even if it was anger that drove them there, just, “I want to get away from you, you know, I don’t want to be a caregiver right now,” whatever it is, they got this person there, they came and were able to just unleash all of that in a safe space. And other caregivers who normally may not say that stuff felt the freedom to also say, you know, “Do I resent this person for the way my life is now? I resent this situation. I’m upset about this situation.”

And by the end of it, people understood, “I’m going back to this situation, but I’m going back to this situation, armed with some tools to take care of myself, even in the midst of the chaos that awaits me.”

Because we know you’re going back to that situation, but how do you go back better, healthier, and with a plan for your future? And I think that’s a really big deal.

KC: Mm. So Kim, one of the things that you said there really struck me, you talked about having a safe space. What do you mean by having a safe space? How would you describe that?

KT: So I would describe that as where you feel comfortable, even exposing some of the quote, unquote, dark parts of yourself. And you don’t feel like people are going to bash you for it, or, you know, people are going to look at you differently as a result of that. Or if you say things, other people’s expectations of what caregivers should say about their situation are, are heavy on folks.

And so if you say you’re mad, you say you’re upset. You say you hate the situation. Sometimes it’s just like, oh, that can have a hard backlash.

But I’ve not seen that at any of the retreats. People feel comfortable just being exactly who they are being vulnerable. And I think that’s a big part of providing a safe space. You feel okay here, knowing that we are here to work with you and to help you even at your most vulnerable, that is what creates a safe space.

KC: It’s that you are creating an entire environment that’s safe. There’s no pressure. There’s no expectation. Really not even to show up. I mean, other than just show up, right. You don’t have to attend anything. Unless you want to, if that’s the kind of care that you need for yourself.

So it’s physically safe. It’s emotionally safe. There are mental health providers on site, right?

KT: Yeah. So, um, everybody who is facilitating or co-facilitating and we have two main folks, um, Alyssa and Hannah right now. We are in the midst of training some other folks, but they are both licensed marriage and family therapist. Or it’s someone who has extensive knowledge in the field of mental health. As well as caregiving,

KC: I know because you and I have talked about it, that one of the major obstacles to caregivers getting help. I’ll just say getting help in general, but let’s specifically focus on Nancy’s House for a minute. You know, one of the obstacles to getting to a Nancy’s House retreat is respite care. So getting help with the people who their caregiving responsibilities are directed toward on a daily basis.

How do you help people get the respite care that they need so that they can specifically attend a retreat with you?

KT: We have a couple of ways. And so when you’re signing up for our retreats, we talk about, what do you need for that person in order for you to be here? And can you describe the type of help you need?

So if you do need respite care, Nancy’s House will pay for someone to come in. Nancy’s House will also provide you resources.

We try to help people see that there are some folks around them, but it’s the ask that’s so hard for our caregivers. It is the ask. Like maybe your sister could come help or maybe somebody from their family or a friend or something like that. And so they’d rather go straight to professional care and it’s like, well, I don’t want to ask my family or I don’t want to ask somebody. But once they started talking to one of us, it’s like, okay. I didn’t think about all these people that actually might be able to, to help me.

I just have to have the strength to ask and know that it’s going to be okay. And that’s the hard part.

KC: Well, one of the things that I say about asking for help is that it’s actually a two-part issue with two different skill sets. You have to ask for help, which is so hard to do. Yes, honestly, but then you have to receive the help.

And they are, you know, I mean, correct me if I’m wrong, but I think they are two entirely different skill sets. They are. It’s bad enough to just ask for the help, but then even the thought of having someone come into your house and take over your duties and be responsible? And let’s face it, the prospect that they might be judging you for what they see that you have done or haven’t done.

That’s a whole other skillset. So what are some other obstacles that you can think of. And, and I’m going to phrase this question this way, obstacles to caregivers taking care of themselves. How do we figure out how to take care of ourselves, knowing that we have other responsibilities too, but we also have a responsibility to ourselves.

KT: So I’ll start with external. I think, since we talked about respite care, some of those factors are having, I want to say a family or friend network that has proven themselves not to be trustworthy or, you know, something like that. You can’t rely on these folks as well as, and especially in the time of COVID, but our healthcare system is, is strained.

At this point, getting respite care is, is harder than I’ve ever seen it before in some people’s situations. And then trusting these folks to adhere to the kind of needs you have within your household. Concerns about what’s actually going to come into my home. And then even if they adhere to some of the things you’ve set for your home, are they going to provide quality care?

And I think the other thing is the weight of other people’s expectations. Whether that’s felt weight that I have or actual, their expectations. If you’re taking care of someone, it’s like, well, that’s what you’re supposed to do. You know, you take care of them, you’re their wife or you’re their spouse. Well, that’s what you do.

And if you don’t get time for yourself, it’s, you know, “this is your lot in life,” so to speak. And I think other people’s expectations or our thought of other people’s expectations on what we should be doing all center around, taking care of that person versus us being able to take care of ourselves.

KC: So do you think these expectations is that an external obstacle or an internal obstacle?

KT: See, on the, on the one hand, I can say it’s external. This is one of those external things that becomes internal because you may think folks have this expectation and they really don’t. They just said something that was off putting for you and put you in that mindset.

And then I can say it I’ll think of my own community. A lot of folks in my community are more or less, “Well, this is just. It’s what you do, this your family, it’s the way it’s done.”

KC: It’s this, “This is the way it’s done. That’s that’s how caregiving is done.” Isn’t it?

KT: Right. So you’re tired. You’re just tired, you know, it’s just, it comes with it and this is where you are. And so. Some external stuff does really, truly exist for, “we expect you to stay in this role.”

KC: So that’s a  structural problem in our culture or a systemic problem in our culture.

KT: Absolutely. Because even if we’re working with caregivers, still, we have to understand that they’re in an environment and system that, um, that doesn’t see their value outside of the person they’re caring for.

So we need to educate the people around you. So it’s bigger than just focused on caregivers. We seek to let other people know. We seek to be a part of those communities that could have some impact on your thought process of we need to take care of our caregivers.

KC: So what are some of the internal things that keep caregivers from taking good care of themselves?

KT: Whew. All right. Guilt. We’re going to start with guilt. One of our caregivers – and it’s a video that’s on our website – one of our caregivers said, “you know, how can I live while someone else is dying?” And to us, it’s a three day retreat, but to the caregiver, right? They are leaving this person after I don’t know how long, for three days and going to do something for themselves where they may have fun.

They may forget about some of their duties for a while. They may begin to experience life in a way they hadn’t in a while. And this person’s situation at home has not changed. It doesn’t matter if it’s their first time being away in years. It’s still like, “I’m so guilty. I can’t believe I’m doing this. I should be there because they need me. I need to be there. This is wrong.”

And also felt responsibility. “This is my lot in life, so I should be here. I shouldn’t be doing anything but this.”

You know, have you ever met someone who they were asleep and they’re taking a nap and I’m like, “oh, ok. You’re taking a nap.” And they’re like, well, “No, I’m up. I was just A, B or C or doing A or B,” it’s like, no, right. “Please, please take a nap. It’s ok.” But it’s just that, “no, I have to be doing this. This is my lot in life and I need to be doing this at all the time. My life needs to revolve around this person and their needs.”

KC: That just makes my heart hurt because that’s, I, I hear that so much in the world of family caregivers. It’s that, it’s what you said is, “That’s my lot in life.” Ugh. That’s the thing that I always want people to notice that they’re saying. It’s as if there is no choice, right. Once you become a caregiver, that’s it’s, until those responsibilities are done, there is nothing else for you.

And it’s not true. And it’s so painful and people really, I see people really get into the depths of despair and depression and extreme isolation and extreme loneliness. And I think it comes from that thought, “this is my lot in life. This is what I have to do.”

KT: Yeah, absolutely. What else? Fear.

And I say fear because the thought is, “what if something happens while I’m gone?” And then fear is going to go into the next one that I will talk about, but you know, “what if something happens while I’m gone, did I leave all the instructions? Are all the medicines going to be given correctly? Is this person going to be able to lift them?” Or, you know, all the things that could happen and especially someone who’s really medically fragile.

I think sometimes our minds go to the extremes. If that person lives in fear and continues to wait for whatever happens that stops their caregiving responsibilities. They’ll never take care of themselves because that’s always going to be that fear, shame, shame, shame.

KC: Oh, it’s just, you know, even the word shame. And I talk about shame a lot in my work. It’s not something that I shy away from. It’s not something that I hide from. And yet every time I say the word, I mean, you’d think I’d be desensitized to it as a word, right. It feels like this heavy, thick wool blanket that someone has put around my shoulders and, and maybe it’s even wet. It’s like it’s dragging me to the ground. It makes my skin prickle. It makes my heart hurt. Even the word itself carries so much weight.

KT: It does. It absolutely does. And I think that that’s another one of the structural things that adds to the shame, the inner shame, that it all feeds into those expectations.

The lot in life situation that, “I can’t be doing this while you’re doing that. I’m ashamed of myself for even thinking that I wish my caregiving duties would end.” And it can end in a number of ways.

KC: That’s true, duties can end in a number of ways.

KT: Yeah. And then that judgment piece and that shame and judgment sort of go hand in hand. When you’re coming to a Nancy’s House retreat for the first time, you know, you are not necessarily sure what to expect. And the thought of sitting with other caregivers and you you’re like, “Oh, well, all the caregivers, they look like they’re okay, but I’m not okay. I am far from, okay. I don’t want to expose this to anybody. I would rather not sit in the room with these people because there’s some stuff going on and I’m not well, and I’m not ready to expose that.”

That would keep me home. That would absolutely keep me home. And that judging, that fear of judgment can lead into that shame because now I’m ashamed of how I feel.

KC: Are we talking the judgment that comes from other people or the judgment that comes from inside of yourself?

KT: You know, I think it can be both.

KC: I agree, totally agree.

KT: Both. It can be both for sure. But I was thinking about, you know, going to be meeting up with other people and then we have the professionals there.

And until you step into the place where we are, you don’t necessarily know how warm and safe it is. So you’re just thinking about this retreat, knowing that there are licensed counselors there, they’re like, “Oh Lord, if I go in here and tell them this, how depressed I am or how I want this all to end, however, it’s going to end. They’re going to have me locked up somewhere. This could be bad.”

KC: You know, this is another obstacle that we have is we do not understand what emotional safety is. We don’t know what it’s like to walk into a room full of people who aren’t going to judge us. This makes me both angry and so sad.

That there’s so many of us and I’m not just talking family caregivers, you know, that I’m talking humans. Who don’t understand emotional safety.

One of the primary reasons I think is because we don’t tend to get a lot of that in our own family dynamics in our first families. And of course, as family caregivers, we tend to be caring either for someone who is family or someone who is like family. And so we drag all of our family dynamics with us. Like this big, heavy backpack, everywhere that we go.

KT: And I think so many of these emotions tie together, you know, with the fear. And then when you think about trust, “I’ve not been able to trust the people around me to take care of the responsibilities around here.

They’re not reliable. You know, I just don’t trust whether it’s professional care or whether it’s the people around me.” The trust is not there. So it’s like, “Nope, I’ll just do it myself. I can trust me. I know what to expect, because if I leave, it’s all going downhill.”

And not really looking at, maybe it could go well. I mean, that’s the potential that it could go really well.

KC: And I’m going to say that’s another obstacle, right? “What if I leave for the weekend and everything is fine. What if I really could get help? What if things could be okay without me? If the only identity I have is as a caregiver. And then I leave and everything’s just fine. What happens to my identity? Do I disappear?”

I think one of the things that I’d really like to ask you is what is something that people get wrong about Nancy’s House?

KT: That we are specific to one kind of illness. We work with caregivers, no matter what the illness is with the person they’re caring for, the illness or the disability that they’re living with. That does not matter a lot of our stuff.

Well, most of our stuff is grant sponsored. So if the ALS Association does a grant for us, we focus on ALS caregivers for that particular retreat. But we, as an organization, if you are a family caregiver, then Nancy’s House is here to serve you, period.

And then another thing which I think is really, really big, there are some other organizations out there that do some form of retreating. And it’s a small number, but they are specific to a particular population. They’re probably more for enjoyment. Not taking anything from anybody else’s program, because our program is for enjoyment as well. But they are skill building.

Ours is research-backed process to how we do it. So you know, repairing your sleep is going to take at least two full nights and your first night you’re already, you know, you’re in a new place, so that works. But at least you get that next night to get some full sleep. Like rest and breathing and all these different things that you can take with you.

We usually have eight caregivers at the most, normally, depending on where we are, but that small group aspect is another thing that I think also really sets us apart from other organizations that do something similar. But I can say Nancy’s House is very unique in any space.

KC: Your mission is to treat the person as a whole person, right? The person with caregiver responsibilities gets to be a whole person when they come to Nancy’s House. Hmm. I’m just getting chills, even thinking about this.

And Nancy’s House does different kinds of caring for caregivers year round, right? You do webinars. You do a conference. So Nancy’s House is constantly looking for new ways to support the caregivers, right?

KT: Mm-hmm. We also have informal call-in support groups the last Monday evening of every month at 6:00 PM and the last Thursday morning of every month at 9:30 AM.

We have a virtual book club starting in July and we have two groups. We have one book club that is specifically for caregiving and self-help and then another book club that is for a variety of genres that people are interested in. Something I found interesting when I was doing the research and doing a poll to caregivers about what they wanted to focus on in book club. And I said, surely nobody wants to talk about caregiving because that’s what, those responsibilities all day, that was the number one answer. No kidding. That was the number one answer was books about caregiving and the next thing was self-help. And I was just, I was shocked because I was prepared for it to be like comedy, romance, gimme anything, just not caregiving stuff.

KC: So you’ve also got a conference coming up in November, right? A virtual conference.

KT: We’re having a virtual conference and we have great folks, great speakers. It’s always a good time. Kay, you’re going to be there, right?

KC: Oh yeah, I’m going to be there. Attending and hopefully speaking, but yes. Oh yeah.

KT: It’s, November 5th and it usually starts at eight thirty and goes to twelve thirty. We do sort of a half day thing and people can pick their sessions. I think we have six sessions this year and it’s, it’s always a really good time.

KC: And it’s really compassionately priced, right? $10? Yeah. That’s what I call compassionate pricing. So pricing shouldn’t be a barrier, right?

KT: Pricing should not be a barrier. That’s what we’re hoping for, anyway. Yeah. We also have webinars, of course. Kay, you have hosted some great webinars for us about rest and boundaries, which always need to be drilled home.

KC: Oh, for all of us, boundaries. And thank you by the way. It’s absolutely my honor to be a part of your suite of providers. You have become a real partner to me in my work and I’m so grateful for that.

So I think just to wrap things up here, what are maybe three things that you really want our listeners to remember about Nancy’s House?

KT: That Nancy’s House looks at you person first. And that guides everything we do because we’ve all had experience with caregiving. We’ve all had to learn and grow and deal with some hard lessons through caregiving, through other people’s expectations and all that.

Nancy’s House puts you first. And that’s it. You are our focus. I can’t even say first, you are the focus period.

The second thing is that we do retreats and activities as funds become available. It’s just difficult, especially in these COVID times, things aren’t funded the way they used to, you know, so we are working really hard to try to make sure we can serve as many folks as we can. But, you know, we do have a waiting list right now and we are really working hard to get funding, to continue to serve caregivers and some of these retreats and other things like that. Because we have our retreats, you know, compassionately priced as you put it, I love that, for our caregivers. And offer scholarships and things like that.

We have all these other programs to try to keep folks engaged and break some of that isolation.

And the last thing is you have never met a group of people that will love on you and care for you like the Nancy’s House folks. I can safely say that with every fiber of my being no doubts about it, myself included, we are here to love on you and to help you love on yourself. We want to see you be able to understand that you are a person first. You have these duties, but you’re a person first and you are so worthy of love and time and self-care. And we desperately want you to take care of yourself, period.

KC: Kim, I just can’t thank you enough.

What is the website that people can go to, to get on that waiting list? To sign up for things like our webinars and for the conference, where can people find Nancy’s House?

KT: Okay, if you go to Nancy’s dash house dot org slash calendar and that’s Nancy’s-dash-House dot org slash calendar. You can go and sign up for the book club, signups are happening now. The webinar signups are happening now, and you can sign up right until the time that any of this stuff is happening. And if you want to become a guest, if you go to Nancy’s dash house dot org, there’s a form there that you can fill out to get on the waiting list of Nancy’s House. We update that waiting list regularly. And as soon as something comes available and the profile fits, we do reach out to folks as soon as we can. And then when we sponsor our own retreats, we reach out to everybody on the wait list. Hey, come one, come all caregivers cause Nancy’s House is not illness specific.

KC: And we can find links to all of your social accounts as well on the website? Yes. OK. And I will make sure to put that link, all of those links, in the show notes. Most importantly to find Nancy’s House, but also to start learning about what some of these obstacles are, where they can get even more help.

Kim, your work is amazing. I can’t thank you enough. I can’t thank Alyssa enough for starting Nancy’s House. And having this vision and having this go on now for 15 years. Is this your 15^th year?

KT: Well, we started in 2006. Our first retreat was in 2009. So, yeah, so it’s, it’s been around a long time.

KC: All right. So. Thank you. Really, thank you for showing us how to take care of ourselves and helping us get out of our own way. When we decide that we finally want to do that. How’s that?

KT: Yes, that’s perfect. Thank you, Kay.

KC: If you liked this episode, you have to go check out my monthly membership for family caregivers who want to get some rest and feel less alone. It’s the place for emotionally-safe community, brave self-development and always self-compassion. You can find a link to it in the show notes and on my website at Facilitator On Fire dot net. And that is Facilitator On Fire dot net. If you are looking to connect with me, the best place to find me is in my free Boundaries Community. And I would love to hear from you. I can’t wait to be with you again in the next episode, From One Caregiver to Another.