Caregiver Spotlight: Nija Phelps
National Caregivers Day, the third Friday in February, is a time to honor those who provide support for those of us who need it. Caregivers do so much, and a lot of their labor goes unnoticed.
Many of us don’t understand everything that goes into caregiving. So we spoke with Nija Phelps, a member of the Voices of Workers group of the Paid Leave for All campaign representing Connecticut Women’s Education and Legal Fund, a member of the Family Values @ Work network. Nija, along with her husband, moved from Indiana to Michigan in 2014 to take care of her mother-in-law when she fell ill. Nija not only showed us all that goes into caregiving, she also had some great advice for how we, and the US government, can support caregivers and the people they care for.
Note: This interview has been edited and condensed for clarity.
How did you become a caregiver?
I was living in Indiana with my husband. It was 2014, and we had been waiting for the day where we were going to get the call that his mom was in the hospital in a diabetic coma. She’d told us that she was going to start cutting back on her insulin medication. And we were just, obviously worried for her, but we were expecting a call one day.
So the day came where I got a frantic call from my husband. And he says that his mom was in the hospital and is going to have surgery and that he didn’t find out from her. A friend of hers called him. We were really worried, so I told him just to go. It’s just a five-hour drive [to Lansing, Michigan]. We found out that she was definitely going to need rehabilitation. They were talking about the possibilities and [that] this could be about a six-month thing to get her back to not normal but a new normal. It was going to be very expensive. Insurance was only going to cover a certain amount, and we realized [the money] would be best spent at the rehab center. So I quit my job, and he quit his job, and we moved in with her. And that was just it. We didn’t really plan past that because it’s family, and to us it’s what you do. So we became caretakers.
How did becoming a caregiver impact your day-to-day life?
[Caretaking is] what I think about even now, still. It’s one of those things where we all want to think of ourselves as good people, but until you are in another situation, it is hard to think about someone else. You think about your day differently. The second you open your eyes. You got to take a deep breath. And then you’re like, okay, what do I have to do today? And you go through your head and think about all the things that have to happen. Then you think, okay, how do I start my day to make sure that it can happen? You have to balance taking care of yourself with all of the things that somebody else needs, never mind what they want. And then if you can get it done certain hours of the day, because you still have sometimes, you know, something to be done that can only be addressed during the hours of like eight to five. And if something else earlier in your day takes too long, then you might not be able to address that. And that can be really difficult just because if you’re caretaking something always happens, and it takes longer than you think it’s going to. It can take you days to take care of some business that should have taken, you know, an hour maybe.
What was the most rewarding thing about being a caregiver?
I think just watching my mother-in-law get better. And when she didn’t need us anymore and she thanked us. Then, with our daughter, she said, “Oh, you’re such a good mom, but you know I wasn’t surprised at all. You love kids and also look how good you took care of me.”
What surprised you most about caregiving?
I didn’t expect it to be that hard. I really didn’t. I was like, it’ll be challenging. We can rise to this challenge, which we did, but there was very much a growth period. She’s his mom, but now we’re caretaking. So the dynamics were a little bit different, but not in every way. So it surprised me how hard it was, and then realizing that so many people have been doing that forever. And again, without help. I don’t know how people go on. I just don’t. I know that they do all the time, and our situation wasn’t as severe as others. It was hard, and I didn’t realize it was going to be that hard. And then I didn’t realize how hard it was until I got to reflect afterward.
What are some of the challenges, both daily and singular events, that you experienced as a caregiver?
The toll that it starts to take on your body because you’re doing physical things that you weren’t before and you’re doing them regularly. So your body hurts. You have to adjust for that. You have to take care of your body now in addition to the extra things that you’re going to be doing, you need to then do caretaking for your body afterward. And then probably the social-emotional aspect. Because we were so focused on caregiving, weeks would go by before we would talk to friends or other family members — maybe a quick text, but we just weren’t really plugged in to our community. We were just focusing so much on caregiving for his mom. Sometimes you lose yourself as a caretaker.
What are some of the things you do to care for yourself?
Every once in a while I was like, I need to go take a bath. I need that. I need to do that for myself. You know, things like that. Or I’d tell my husband, go lock yourself in the other room and play a game, play a video game for an hour. That kind of a thing. We went on date nights sometimes.
What kind of support did you receive? What kind of support would you have liked?
The medical team was great explaining what was happening, what was needed, what was going to go on in the future and then getting all of her medicine together and making sure that we were able to have the permission so that we could go in and do what was needed because she wasn’t going to always be able to. They made that part really easy. I went to the pharmacy, and they knew who I was. And they were great about sometimes they would recommend things. [There was] also a pamphlet for caretakers, which was good to have, but again, it’s hard to focus on.
My parents were really great. They supported us from far away, in Arizona. They were really impressed with us. They would say, “You guys are such good children.” And that was really nice. And her ex-husband, my father-in-law, he and his wife live in the same town. And so he was like, if you need it, I can come over and watch TV with her while you go out or I can pick up food for you. Our friends were great. They knew that we were not going to be as free as we used to be, but whenever we were, we would talk on the phone. We would have group texts. They created [the group text] for us, and they were like, hey, whenever you want to just come here to complain or ask for support we’re here. And that was really nice just to know that that was there if we needed it.
If we had more in-person presence that would’ve been nice. It was understandable why it couldn’t happen. That part was really difficult — such a big change. And then of course trying to get through the process of getting assistance. Oh my gosh, trying to get her labeled as short-term disabled. Usually what happens is you apply and, unless it’s very, very obvious, they deny it. Then you have to appeal. I think I was more surprised that her doctors were like, oh yeah, here’s the letter you’ll need from us because they knew [she’d be denied]. That means that there’s a problem in our system. The people already know you’ll need this for support. So we were able to get that and reapply. But that took like three months. If you don’t have the time, the energy, the education, the resources, the money to do that, I don’t know how you’d get through it. It shouldn’t be that hard. It really shouldn’t. It’s a deterrent, and it feels kind of on purpose. And that’s not a great feeling [to have] about your country. I’ve been working since I was 18. So I had been paying into the system. Happily. I wasn’t someone who complained when they took money out of my check. She’s retired. And I was just like, why aren’t you taking care of us?
What advice would you give to other caregivers, both those who are new to it and those who have done it for a while?
You definitely need to take time for yourself. If you didn’t already do it in your job, calendar in your social life. I know some people think you shouldn’t have to schedule everything. You shouldn’t, but it makes life so much easier. So schedule time for yourself, schedule time for [the person you’re caring for] to be by themselves, too, because they’re dealing with a lot. The change that’s happening to them, whether it’s temporary or permanent, it’s extreme. And they don’t always want someone needling them about how they’re feeling every second. If they want to veg out and watch TV, let them sometimes. And that can maybe be the time when you’re doing your own thing, too. But right away find all the resources you can and ask all of the people who are involved in the care their advice because [different people will know different things].
What would you like people who aren’t caregivers to know about caregiving?
Just to try to think about someone else being in their shoes and know that it absolutely can happen to you. I’m an only child. So I always thought at some point it’ll be my job to take care of my parents, but you know, later. And they’re still both really healthy and active, which is great. It’s wonderful. But we were not expecting to have to take care of his mom so early. Like I said, that was in 2014, we were definitely not expecting that. Surprises will happen, and it’s hard to prepare for something like that. I don’t know if you can really, so just understand it can happen to anyone. It does happen to anyone, and it’s not necessarily anyone’s fault, but it’s your new reality.
And people need help. They need sympathy, they need patience, and they just need kindness really because of what they’re going through, both parties. And that it’s only right and fair and humane to help people. It’s not that we want anything that’s a handout. We want what’s expected. We want what’s already promised. We just want to be able to actually take the things that we’re supposed to be able to. It’s there, but it’s not freely given, and that’s not right. And we need the people who have more time and energy to help us fight.
How can folks who aren’t caregivers support the caregivers they know and those they don’t?
Just learning about stories is a really big thing. When you hear a story, it connects [you] and them. You either see yourselves in them or someone else, because like I said, it can happen at any time. For some people it happens multiple times in their life. And then I thought about how much support isn’t there for new mothers and fathers. So it could be your whole life in various ways, caring for people. And there should always be a kindness for the people who are doing that because if we didn’t have caretakers, we literally wouldn’t have the human race being as successful as it is. People would not thrive.
We need the people that we elect to understand that, and we need to put pressure on them when they don’t understand it. We have a lot of great champions, and truly just contacting your representatives works. Sometimes people think it’s fruitless, but it’s really not. Phone calls are good because it disrupts their normal day. Postcards and letters are good or emails because they actually take them out with them to show people when they’re in either a caucus or when they’re actually on the floor trying to get a bill passed, they use that [as] evidence. They’re like, these are all the constituents that reached out to me. They use that. So they actually want us to contact them.
How would an adequate, holistic paid family and medical leave have helped you in your caregiving situation?
It would have made the quality of our lives better. It would’ve made the quality of his mom’s life better, and it would’ve made us contribute more to our country.
If you don’t have a good relationship with the medical team — which we did — but the whole care team, having somebody whose job it is to help you understand what’s happening, what process this person’s going through [would’ve been] great. And having therapy available.
Money is so often what would’ve helped. We didn’t know from month to month what our lives were going to look like, and that uncertainty makes it really hard to plan [and] makes it hard to be hopeful about the future. Just making it livable, making it not just survivable, but I use the word thrive. This shouldn’t have [changed our] lives that much because of what happened, but they were because the American government and the American people weren’t supporting us.
If you could add a provision for caregivers in a national paid leave policy, what would it be?
It’s hard to boil it down. I mean, again, it’s just the accessibility of funds. It has to be number one. It has to be. But two, and a very close number two, would be if there was, and there are people who do this all the time, social work — to have a case manager who also doesn’t have red tape so that they can help us navigate the multiple complexities of this therapy, physical therapy, changes to the home, medical, all of those things. because we were lucky that we had her care team and that we were able to understand a lot of the medical stuff that was going on. [But] I don’t think that the average person could navigate this well, if they didn’t have resources already. I really don’t. Someone who’s an expert to help you navigate it all and check in with you, that kind of a thing. And money to make sure it can all happen smoothly. Ours is a good story, but we’re lucky that it’s a good story. It’s a story that so many people don’t have.
