Rayna Neises: Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises your host. And today we have Ally Neises, our cohost, and we’re going to be exploring more about child caregivers and boundaries in caregiving in response to my interview with Deborah Harlow.

So the interview with Deborah, it just is completely amazing to think of being 12 years old and finding yourself in a place of having to be the primary caregiver for your dad, it just blows my mind that she was able to step into that role and manage his healthcare, his insurance,  just so many pieces involved in caregiving. I just can’t even imagine at the age of 12 being able to step into that role.

Aly Neises: It is mind-blowing to me. I listened to that interview just trying to put myself at 12 years old and imagine what that would like to take care of an adult who is not only just a normal adult, but he’s also your father, like how that must feel and the tenacity and the ability to do that. Just. It’s amazing.  It blew my mind. I can’t imagine

Rayna Neises:  It’s so inspiring, it had to been really hard for her, but how she was able to take so much from that season of her life and learn from it and really let it build and give her the character that she has today.

Aly Neises: Very much shaped the person that she is. She talks about how it’s even shaped the type of caregiver she was, and it shaped her passion a hundred percent. I did some research just trying to figure out how many children, caregivers there are and according to the National Alliance for Caregiving, there are 1.3 to 1.4 million in childcare givers today between the ages of eight to 18, eight, eight years old.

That’s crazy. That number is astronomical, and I can’t imagine understanding or maneuvering the many hats she had to wear and figuring out what priorities there are and what is the most important. And she talked about how she would have to kind of take that hat on and off.  one of the things that she talks about very frequently is her dad was diabetic and so she had to be late and maneuver his diet and his meds and things like that, and also what he wanted. So, no dad, you can’t have those donuts. I still love you like that. Little, just that quick hat switch to help maneuver through that life to make it easier, but also to dignify and show respect to those sacred relationships as she talks about, so often throughout her interview and throughout, her passion in her speech.

Rayna Neises: The wisdom at age 12 to know to do that. I mean, as I was caring for my dad at my age, it wasn’t natural instinct to remember to do that in the middle of the time of that kind of power struggle. So, I just had so much respect for the way that she was able to understand. That the hats needed to come on and off and realize possibly, maybe, looking in retrospect, realizing that she was wearing so many hats, not just as caregiver, but as sister and helping her brother as teacher teaching herself to be able to do her schoolwork and keep her grades up and be able to just become who she wanted to be, be on her caregiving years. It really is an inspiring to see how she was able to manage that. And then just the passion she has to help people learn to for themselves, have a voice and realize that they are a caregiver and that means that there are things they need to understand.

But when you go back to that number of 1.4 million child caregivers in this country. I always think to myself, that’s reported. I wonder how do they know that? I mean, these kids aren’t taking their parents to the doctor. It’s, it’s amazing that they’re even identified as child caregivers, and that means there’s so many more out there that are cooking dinner and taking care of their parents and some of their everyday living needs that we don’t even know about. When I think as a former teacher all the things that kids have to juggle in life today. Putting that responsibility on top of them as well. Again, it just is mind-blowing to me.

Aly Neises: It’s inspirational.

Rayna Neises: One of the things that came to mind is she was talking about that second-tier caregiver. She was talking about her daughter stepping into that role, and that reminded me of my niece and nephew who were such a great help for my dad.  it was so cute because my niece is his firstborn granddaughter, and they just had such a sweet relationship when she was little, and it was so fun to watch times where he was not particularly happy with my sister or I, and we would ask her, can you go see if grandpa will do this? Or can you suggest to grandpa to see if he’ll get in the car with you? Or those kinds of things. Just allowing them to have that relationship and using it a little bit to our benefit, but just the way she talked about with her daughter, the important conversation she’s been having about, I’m the one who’s taking care of grandmum. You’re the one who gets to enjoy time with her and making sure there’s not a feeling of responsibility that’s beyond her daughter’s years.

Aly Neises: I think it’s very important, as big, especially when we’re talking about a sandwich generation, but most of our listeners are, they’re taking care of not only their parents, but they’re raising children as well. That’s hard to try to set those boundaries, not only for yourself but also for your children. Deb knows what it feels like to have that pressure of being a primary caregiver for somebody. I think she’s trying to shelter her daughter from that in rev, really. So, it’s not something that we necessarily want for our children. If we can help prevent it.  I think it’s important that she has those conversations with her daughter just to show her the respect and the sacred relationship, not only between herself and her mother but also between herself and her daughter too, that they can both grow within that relationship and have those boundaries together as well.

Rayna Neises: I think too, it’s important to realize that when we’re dragging our kids along with us, that we have that conversation, that it’s about, being able to spend time with our grandparents and being able to enjoy their grandparents and find a way to connect,  find things in common. My nephew helped with my dad by doing puzzles and sometimes they played ping pong and you know, just incorporating those things. That would be a normal activity that you would do with a grandparent that even as the grandparents are aging, you continue to build those relationships so that there is a relationship there and they can serve and give out of that love for that grandparent, not out of obligation or feeling like I have to go see them today. I love that, that conversation about the relationship and helping them to see and understand how important that relationship is because they too will be a part of walking that parent home. They too will lose that grandparent and have that grief and see the end of life in some ways. No matter what their age, they’re going to be a part of that. And so, having that open communication is really important.

Aly Neises:  I think too, like we’ve talked about before, creating those memories and things we can look back on when those parents are gone or those grandparents are gone are important, not only for us as caregivers, but also for our children. I’m sure Delaney, those are some of her fondest memories that she still has of grandpa and the things that they used to do together and their relationship that they have and that’s something that will shape her relationships in her future as well as the relationships she creates out of this. She’s going to want those positive relationships in her future as well.

Rayna Neises: Definitely. And one of the things too that I love is that my sister and I were able to model. Our family values of caring for each other and making sacrifices and making it a priority to care for our aging people. You know, in our family, and even my dad’s sister, who’s still alive, we go to her house and we help out with things and we spend time with her. I think that just models that family value. That’s huge in helping her to continue on that tradition of how our family treats aging people. And it’s definitely a different thing for us because when I was born, all of my grandparents had already passed away. I had one great-grandma, and she passed when I was seven. We didn’t have that tradition necessarily where I saw how my parents took care of their parents because they were already gone by the time I was born. So I love that we have modeled that for my sister’s kids and for my kids.

Aly Neises:  I agree. And I do think one of the things that your dad did beautifully for you, like you said, your grandparents were already gone, but he showed you that you take care of others by taking care of your mom. You know, he took care of her for a long time, and just the love and compassion and that modeling he showed was a great way to model for you girls as he got older as well. He didn’t have necessarily the grandparent aspect, but the parental aspect

Rayna Neises: [00:10:12] Marriage and love and family and cherishing those things definitely was a part of who he was and a characteristic he handed down to me as I see that in our family values structure. I agree. Being able to step into that role and find how it works for you is so important. Because I was just 16 when my mom was diagnosed. And one of the things that really stood out to me was as I was reaching that point where I needed to make a decision of where I was going to college, I started to take on, the burden of my mom’s illness in my decision making, I started thinking,  there was a college I could go to that was 45 minutes away where there was a college I could go to that was two and a half hours away and I really wanted to go to the one, two and a half hours away. But I was really leaning towards going to the one 45 minutes away because of my mom’s illness. And my dad stopped me and had a conversation with me and asked me, why are you considering this one? Why are you considering this one and where do you really want to be? And I don’t remember telling him what I really wanted, but I remember him saying to me, Rayna, Colleen, I will take care of your mom.

You go live your life. And be happy and that will make us both happy. And he took that burden of me being a caregiver as a child off of me because it really wasn’t my role. He could handle it. It was his role. I was their support, but I was their daughter support. I was there to love them and to spend time with them and make memories with them, but not to carry a load of caring for my mom at that point in my life. And like you said, she lived 12 years. So, there was later in life where I was able to step into that caregiving role, but it was so important to him that I make the choice to go where I really wanted to go. Not that I make a choice to stay close to home for a reason it really wasn’t valid.

Aly Neises: I think that’s a beautiful thing that he did for you. I think that that shows how much he understood and how much he loved you and understood the impact that her disease is having on you and that he recognized you were willing to make that sacrifice to help, but also to identify that it wasn’t necessary. I think it’s a great way to talk about how, boundaries set, but they have to be a give and take kind of relationship. It’s not like he said, it’s this way or the highway. He said, you know, I appreciate that you’re willing to make that sacrifice, but let’s do this instead. It’s what’s going to make you happier, and that’s okay.

Rayna Neises: That reciprocal part of the relationship, like Deb, talked about that was what was so important was it was the give and take. I could still give, but I didn’t have to give everything and not do what was important to me or go where I really felt like I was supposed to go. And so he gave me permission to do that from the very beginning and throughout my caregiving role. It was important for me to have a reciprocal relationship and understand that, like you said, boundaries had to be a part of that because if we don’t have boundaries, we lose ourselves. We lose ourselves into a role that is just one hat and we give up all the other hats and that’s not what we’re created to do.

We need to share the roles so that we can wear multiple hats and we really can have satisfaction in life. boundaries help us to do that. I was reading in setting boundaries with your aging parents. And she was sharing about boundaries. And that boundaries are really setting, they’re considering the needs of the other person, although it doesn’t always accommodate them. So a boundary helps you understand you’re really looking at everybody’s needs, but it doesn’t mean that you give in or you give up all the time. It means that you look at both sides. She said frequently, we have a tendency to be one of two kinds of people. We have a tendency to be a bulldozer or a doormat. A bulldozer may appear to take care of themselves, but their version of self-care does not take care of other people’s needs. Really, it doesn’t consider them at all the bulldozer needs to win. They need to be taken care of and they feel entitled to do so at the expense of other people.

On the other hand, there’s the doormat, and the doormat functions as if they have no boundaries. They’re always agreeable, they’re always nice and everything is always fine until unfortunately they give and give to a point where they break down.  It’s totally at the expense of their own needs. They have a tendency to be on the losing end of most conflicts and they are not stepping up for themselves at all. In fact, they often avoid conflicts and they don’t really want to do anything to take care of themselves. So they often validate the perception of being helpless and a victim once they start to feel like everybody’s running over them all the time.

[00:15:22] Boundaries are a tough thing. They’re a really hard topic. And like it said, many times we’re extreme in our situations and finding a way to create those boundaries. We’re in. You’re not a doormat and you’re not a bulldozer is ultimately the most important way to find, to figure out how to have boundaries.

Aly Neises: No, I think you’re exactly right. Boundaries are hard. They’re hard in our personal lives, professional lives, our everyday lives, but I think it’s really hard when we’re talking about. Like that was like a sandwich generation, you know, taking care of children and taking care of parents and being a wife, a spouse, so a lot of hats to juggle. So you have to have boundaries so that you can juggle all those hats and be effective at it. Otherwise, you’re losing all the time. And that’s not fair.

Rayna Neises: And truly understanding a boundary is understanding that you can have a win-win. You can know yourself well enough to know where your limits are and communicate them openly, honestly, with the people that are trying to cross into those boundaries and being able to have that reciprocal relationship because it’s not always about winning. It’s not always about losing. It’s really about finding a way that everybody can win, and that doesn’t mean that everything you want is going to happen. You know, when I look at my caregiving years, part of the reason why I had a life to walk back into after walking my dad all the way home was because I set boundaries.

I knew there were certain priorities, certain things that I really valued that were important to me and I couldn’t give on those things. And there were other things that I had to give for a while and come back to later and pick them back up later because there was no way to have all of those things in my life at the same time as meeting the needs for my dad.

Aly Neises: Perfectly. Right? I think it’s important to figure out what you’re comfortable with. I think it’s important to think about what’s a hard boundary? What things are you absolutely not willing to give up on, or what things are you absolutely having to fight for? Yeah. And then also what is a softer boundary?

What can you give more on? You know, some things that I think it’s important. I’m not willing to give up my family time, so that’s a hard boundary for me. I will make a lot of sacrifices to ensure that I have that family time. That being said, I’m more willing to give up family time on a weeknight versus a weekend. However, that looks for you, you know, maybe it’s a holiday or. You have to be at your daughter’s school program so that date is out or whatever. I think it’s important to look and really identify within yourself what you’re comfortable with and also understand that those boundaries are the same for your parents or your children. They’re in also have hard, tough boundaries. So, maneuvering that and understanding that but also respecting that their boundaries are not going to be the same as yours are just as important and being able to compromise. So, you both are happy. You’re not gonna be happy a hundred percent of the time, but you can find a common ground, some grace and some respect is going to get you everywhere.

Rayna Neises: I agree, and I think one of the things that negotiating those boundaries is just, again, comes back to the conversation. Being able to say, this is really important to me. Can you help me figure out how I can make this happen? I know that you need this, I need this. What do you think? How can is your boundary soft? Can you, can we adjust yours a little bit or can I adjust mine a little bit? How can we make this happen? And then that also opens the door to say. I can’t do it all. I need others to help support us too. And that community comes back into the picture again and it allows me to protect those hard boundaries by saying help. I need help who can step in and do this for me so that I can go do what else is important to me. At the same time, continue to honor my parents and take care of that as well by having someone else come in and help with that. And sometimes I hear frequently as I work with women in my coaching practice, their parents don’t want someone else to come in the home or their parent wants them to do it, not someone else.

And I think that’s difficult because it really is a conversation that has to go on over and over again, I understand that this makes you uncomfortable. I just can’t do it now. So it will be Tuesday or it will be Saturday before I can get to it. So if you would like someone else to take care of that, then they can do that and they’ll be here tomorrow. But if you don’t, then you have to wait. You know? So it’s just a matter of negotiating those things. And again, like you said, I think understanding. No. What their boundaries are and if it’s realistic because sometimes it’s not.

Aly Neises: I believe that you have to understand what saying no means to you. Sometimes the hardest words we can say is no. sometimes no can feel like a rejection. And it’s not. It’s our personal interpretation of how it is, but I also think sometimes it’s how it said and the tone it said and things like that. So I believe you are exactly right when you’re talking about mom, I can’t be there tomorrow to do that for you, but I can be there next week if you want this done now. How about we call so-and-so? They can be there. I think finding out if it’s absolutely necessary for you to complete those tasks and those things, and if it’s even feasible for you to do that within that time restraint. If not, it’s okay to say no, but if you do it with love and intention, it’s easier for both of you to be able to have a stepping point so you can move forward. So, you can talk about where the compromise is going to come from or what needs to happen next. If you just are harsh about it and just say, no, I think there’s going to be a lot of hurt feelings and resentment and bitterness, and that’s not what we want.

Rayna Neises: For sure and no can be said without even saying it. the example you gave I said no to tomorrow. But I didn’t say no in a way that made somebody feel like they were imposing or would feel bad because I couldn’t do it. Rather I gave a solution or options to get it done. And that’s the thing for ourselves inside we have to know that no is okay, but it also means that we need to problem solve it so that we can offer a different solution.

Aly Neises: As caregivers when you say no, or when we’re talking about boundaries. I think also just to have in the back of your mind that sometimes we ourselves can get emotional about those things. Things that we’re passionate about. You know? The things that are important to us, but so can our parents and so can our children. And that’s okay. We just need to extend grace and be safe. This is what communication’s about. It’s what caregiving is about. We just need to do it in a safe and effective way. So just having that conscious mind that somebody may get their feelings hurt and it’s not that it was purposeful. We just have to watch how we’re saying it. Doing it with love and good intentions. I think you’ll get a lot further. As my grandma always says, you’re going to attract a lot more flies with honey than you are with vinegar. So being sweet and trying to kind of just having some compassion and treating people with dignity like we’ve always talked about, even in this conversation, is going to get you much further than if you are harsher and more direct with your tone or how you say it. And like you said, coming up with a solution within that same conversation means that I’m not saying no to you forever. You know, I just said no. For this situation, this is my solution that gives, and take is going to be great.

Rayna Neises: Boundaries are definitely an important part of not burning out in your caregiving process. And I think as humans, we’re often all or nothing thinkers. So we’re a hundred percent in going 120 miles an hour, and then we crash and burn. And when we learn our boundaries, we understand our values. That’s not how caregiving has to go. When I think of living, loving, and caring, it’s because we have to do that understanding ourselves and the person that we’re taking care of in order to be able to walk away from the season with no regrets.

Aly Neises: I couldn’t agree with that statement anymore. As Deb even talks about, you can’t pour from an empty cup, so you have to look out what’s really going to fill your cup up. And I think one of the things that you have to look at that is the kinds things you need to do in your daily life to make sure your is full so everyone gets a little bit and probably even overfilling your cup a little bit so that you have some for yourself is going to be helpful in the end as well.

Rayna Neises: Not always an easy thing to do, but definitely one thing that needs to be on the priority list. Identifying what fills your cup and making sure that you take the time to do that. Sometimes as I talk to my clients, we just talk about the fact that even knowing that something you love to do is coming, even if it’s three weeks away, gives you something to look forward to. So there are things you need to do daily to help fill your cup, but there are also those things that maybe you can’t do today, but you can set a date and a goal to get it done so that it will be something to look forward to as well. A little trick that I think is really helpful in that caregiving season.

Aly Neises: I identify with that as well in my personal work life, a lot of my caregivers will tell me, my sister’s coming into weeks, I can do this for two more weeks. And then I get a break for a couple of days or mom is going to go to a friend’s house and I’m going to get an hour alone. I don’t know what I’m going to do with my hour, but I give an hour alone. You know, especially when you’re doing caregiving 24 seven sometimes those little things that they may be a couple of weeks out, but I know this one caregiver, in particular, she had a countdown on her, her calendar, because it was just that little bit of light at the end of the tunnel that I can do this. I will do this. It’s okay. I know it’s hard, but if I keep moving towards that goal, there will be some relief.

]Rayna Neises: It’s amazing how those little things can really help our brain just find the hope that we need to keep ongoing.

[00:26:09]  Listeners, I hope that you’ve enjoyed our conversation today as we’ve explored more about child caregivers and an unbelievable number of kids that are in this world today caring for loved ones just like you, as well as those second-tier caregivers that are supporting you and they’re in your home and loving on your parents as you’re caring for them as they age.

And then a little bit about boundaries and how they can help us prevent that burnout as needed so much during this caregiving season.

Thank you again for joining us. Just to a reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, please contact your local professionals and take heart in your season of caring.