This Is Woman's Work with Nicole Kalil - 060 / Caring For An Aging Parent with Rayna Neises

Episode Date: June 23, 2021

Providing care for an aging parent (or loved one) isn’t easy for a multitude of reasons… juggling your career and family, dealing with siblings, managing financial implications, handling the emotions of both those doing the caring, and those being cared for...just to name a few. I’m joined today by Rayna Neises - Author of “No Regrets - Hope For Your Caregiving Season”, a Certified Coach and Host of “A Season of Caring” Podcast. Rayna advocates both for those providing the care, and for the aging, so you and your parent can be seen, not forgotten. And cared for, not neglected. I firmly believe that caring for our elders is the work of sons AND daughters. Of humans in general who owe a debt of gratitude, of love, of care, to those who first provided all those things to us. Being there in the best way you can for a loved one that’s aging, or the end stages of life is the work of angels, of children, of those who’ve benefited from their parents showing up in the best way they could. Care, appreciation and respect, this is everyone’s work. To learn more about Rayna please follow her on Instagram @raynaneises or visit her website at: www.aseasonofcaring.com To learn more about what we are up to outside of this podcast, visit us at NicoleKalil.com

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is in your own growth and development. So join us now because the space is limited and I cannot wait to see you there. When people say women take on the lion's share of care or home responsibilities, most people think of it from the perspective of being a mom. But what about the perspective of being a daughter? I am Nicole Kalale, and on this episode of This Is Woman's Work, we're going to talk about caring for an aging parent or loved one. Each day that goes by, it's more likely that your parents, your in-laws, grandparents, or even a loved aunt, uncle, or mentor will need care and support. That's just a fact. But providing that care isn't easy for a multitude of reasons, like navigating the juggle of your career

and or your family or both. Plus, there are potential minefields to navigate, like dealing with siblings, managing the financial implications, and handling the emotions of both those doing the caring and those being cared for, just to name a few. I've asked Raina Nysas to help provide some insights. Raina is the author of No Regrets, Hope for Your Caregiving Season, a certified coach, and host of A Season of Caring podcast, where she shares her passion for supporting daughters and sons in the caring for aging parents. She lost both her parents to Alzheimer's 20 years apart,

and she's speaking up both for those providing care and for the aging. So you and your parent can be seen, not forgotten, and cared for, not neglected. Raina, thank you so much for joining us to discuss this very important and very emotional topic. Thank you, Nicole. It's an honor to be here. Okay. I want to start by this concept of both people, both parties needing to be seen and cared for. I think when we think about it, we often think of the parent or the person aging or at end stage of life. Of course, they need care and support. But oftentimes, the person aging or at end stage of life, of course they need care and support. But oftentimes the person providing or the people providing care and support need care and support themselves. So

it's a lot of moving parts. Share with us about this dynamic of both parties needing care. Like you said, it is a difficult, I think juggle is a good word, in seeing and understanding what your parent or loved one needs, how to honor them, how to provide that because it looks different for everyone at the same time as realizing you're important too. And I meet many caregivers who find themselves bitter, angry, depressed, isolated, and just overall not healthy because they have taken it all on themselves and they have forgotten to care for themselves. So I think it is important just to understand that when you become a family caregiver, you

become someone, you put on a new hat and with that hat becomes a lot of responsibility. And we have to acknowledge that and realize that we do need our own support so that we can stay healthy because our parents don't want us to give up everything to take care of them. We are their pride and joy. They want us to live and be happy and have a life that's rewarding as well. So making sure that that's even on the radar, I think, is one of the first things that we

need to talk about a lot more than we do in general. Yeah, that's a good point. I think most parents don't want or loathe the idea of being a burden on their children. But at the same time, I would imagine, you know, they want and we want to be there to support them to have the conversations and all of that. And so it's, it is a juggle. But that's a good point. I don't I don't think our parents want us to have to do it the way some of us might be doing it. I think it's true. I think really understanding that and talking about it, because our nature is often to just jump in and take over. And that's not what's best for any of us. So really

sharing if you have a parent who's a little overbearing, and they're saying, I don't want someone else to do this, or I want you to do that. I think just being honest and saying, you know, I really wish I could, but in order for me to do this, I need someone else to take care of that. You know, it doesn't have to be a one man show. And if they're asking you to make it a one man show, I think you just have to make that honest conversation and let them know how just letting someone else do this piece can free you up to be at your kid's ball game or,

you know, be able to pursue your job or your career advancement, those types of things, because those are things your parents want for you. But it is all about the conversation. Absolutely. So let's talk about the, you know, being a working woman who maybe has aging parents or from your experience, both personally and working in the space, what does that look like? What are the challenges that come up? How much of a, and I put an air quotes burden, though it might actually be a burden? What does that look like? So let me share a little about my story. So my dad was diagnosed with Alzheimer's seven years after my mom passed away. And so we knew what it was going to look like. And that was tough. I think a lot harder with him than with her because we didn't have any idea what it was going to look

like when we started the journey with my mom. She was just 53 years old. And so it was completely different than with dad, but he sat down and he just shared with us, you know, I really want to stay at home as long as possible. His journey was a 14 year journey. His sister lived with him for a significant part of that time, but about five years before he passed away, it just got to be too much for her. And so as the primary caregiver, she wasn't doing a good job of saying I need help or even letting us help. And so she found herself just burned out and needed to move out. And so my sister and I did what most people do. We started looking at memory care units, looking at placing him somewhere. And as I would leave those places, I would just weep because I could not imagine my dad

living there. Don't get me wrong. They were beautiful. And many of them had lots of great activities. But my dad was different than a lot of people that were there. He was still playing volleyball three times a week. And he was lifting weights three times a week at 80 years old. He was a very physically fit guy.

And that was his passion. And so locking him up in a small room or small area was just not something that I saw would work well for us. So my sister and I sat down and had this conversation after my husband said to me, you know, Raina, if you need to move here and care for your dad, then you need to do that. My home on the farm was 220 miles from my dad's home. And so it wasn't just something I could do easily. It was something we needed to do as a family. So as I had the conversation with my sister and said, what would it look like if we kept dad at home? What if I came up three days a week and stayed with him and we brought in help the other time, would you be

willing to let us try that instead of going into a memory care unit? And she's like, sure, I can spend the night two nights a week. And my aunt stepped up and said, I'll spend the night two nights a week. So we just started forming this team and we brought in paid caregivers. We had a day stay option. We did lots of different things to be able to provide the support my dad needed. But mind you, at this time, I had a high schooler at home. I was also teaching four half days a week and I was starting coach training. And so I had a pretty full plate. So I would say to all professional women, no matter where you are in your life, the

most important thing to do is to stop and take inventory of what's already on your plate. Caregiving can be a creeping thing. It can be something that creeps in on you. Your parents just need a little help with the yard or they just need a little help with maintenance around the house or going to doctor's appointment here or there. Those little things start to add up as they age and as their independence becomes more difficult for them. And so we can slowly add those little tasks onto our plate where our plate starts to get overflowing. Or we might find we have a catastrophe or a crisis in our family or a big

change like my dad. And suddenly we're trying to put this big, huge thing on top of everything else. It just doesn't work. So I think the most important thing for women to realize is we have to be intentional. We have to really look at what do I need to move off of my plate in order to make room for this. And this is important. And this is more important than what I'm going to drop off. So after six months, I gave up my teaching job. I continued my coach training. I started my business because that was mobile and allowed me to do that. But sometimes we might need to make a pivot. We might need to make a little bit of a change for this season. And the reason why I call my company A Season of Caring is because I think that's just very

important for us to realize it's only a season. Our parent or loved one is only going to be here for a period of time. We don't know how long that is, but there will be a day that they aren't here anymore. And so that's where we want to be able to step back and look at and have no regrets because we did make the choices and the decisions that were so important. Again, I love that point of how do I not have any regrets with this season? Both of those angles, I think, are incredibly important. Coming from a place of how do I want to feel about this when I look back on it and this isn't a forever decision. What tips do you have for having the conversation with our parents about their desires and their wants, you know, as they age, or should they have something where they can't make the decisions for themselves? It's difficult. It just is. So you're going to be uncomfortable. You're going to not want to do it. They might not want to talk about it. You might not want to talk about it. I think part of it is just kind of knowing where the resistance comes in. Because honestly,

I talked to as many people that their parents are like, I'm not talking about it, as they feel I don't want to talk about it, you know, so I think it's really important to realize where the resistance is coming in. But to have an intentional conversation to sit down and write your thoughts out and make sure that you're able to communicate your love for them and how important it is that you know what they want and that you're able to help them get what they want, like my dad did with us, or to be able to also communicate that it's important for you to be able to support them, but that you need to know what that looks like for your family as well. So again, I think offering to them, I want to be able to do everything you need or want, but I also need to be able to do these things for myself.

So I need to be able to be home with my kids. I need to be able to do whatever it is that it looks like for you. And so I think being really clear with that and then just dropping in some of those questions. I think it also cushions it if you have another family member or they have a friend who took a fall and they're in the hospital and they had to go to rehab, you know, just being able to say, hey, mom, what would happen if you took a fall? Where would you want to go? What would that, have you looked at any rehabs? Have you visited anybody? Do you know of anything? And then, you know, well, what if you couldn't come back home or what if we needed to make some changes to home in order for you to be able to come back home? Would that be important to you?

Or have you ever thought about living in a retirement community? Just having those conversations. But I think it's a lot easier when you bring up someone else who's in that. So that because they're seeing it, your parents are aging, they're losing friends and family members, they're watching that journey, too. And so I think it's a natural way for it to not be on the spot, but really finding a way to bring it up. And and I always say it's not one conversation. It's many small conversations because this is an emotionally charged topic. And we just need to be able to honor each other's emotions in that too. That's great advice. And then my follow-up question in this similar vein is I've heard stories of where caring

for aging parents can create a lot of tension among siblings. Any tips about having that conversation? Like, is it better for everybody? I mean, I know it'll be different per person, but how do you navigate through that part without creating resentment and tension, if at all possible? And I think that if at all possible is a key part of that question, because everybody's family is different, like you said, and they all have a lot of history. And so sometimes we just anticipate or we have old past stuff that's stopping us from working

together. And so understanding that just because your parents in a place where they need you more does not mean that everything from the past is going to disappear and we're all going to hold hands and walk happily ever after down this journey. It just doesn't happen. So understanding those dynamics, it's not unusual for one person in the family to step up and be the primary caregiver. The key with that is if you are that person, you can't step up and take over. Because again, the dynamics of siblings is you usually have one sibling that is just more bossy or more in charge, and that's just more their personality.

And that's great. But you also might be pushing away your siblings because they aren't doing it the way you think they should, or they're not as available as you want them to be. That kind of thing. So making sure that you have just conversations around it. I always say when you're in a situation where you have a sibling that's not participating, your job is to offer. Make an invitation.

Hey, we're going to have dinner on Sunday. We'd love to have you join. Now the key with an invitation is it needs to be a meditation without an expectation because if you're expecting them to do what you're asking them to do it's not really an invitation because an invitation allows you to say oh that doesn't work for me so it can't be an expectation it has to be an invitation and those people that are not participating I think think inviting them to participate, inviting them to do what falls within their skill set is also really helpful. If you have one person who's good with the money, let them help with the money. If you have one person who is a medical professional, let them go to the doctor. They're going to understand more. They're

going to be able to be a part in the way that they can be a part. So look for the ways that you can invite them. I often hear from family members that I live a long way away. I'm not close by. That doesn't mean you aren't part of the family. So find a way to serve, whether it be take a vacation and spend a week with mom and dad and let everybody else off for what they're normally doing or be that person that makes phone calls. You know, when I wasn't there with my dad, I was one who helped to find new doctors or investigate new caregiving teams. I could do things from 200 miles away. And so I offered to do those things instead of expecting my sister to do them all because she was two miles away. So it is difficult. Nothing's going to change your relationship with

your siblings pretty much is what it is unless you really are intentional. And for us, we were very blessed in our time together. My sister and I actually grew a deeper friendship and a stronger relationship than we had before. But for most, there is a lot of tension and there is a lot of stress. So I would also say the reason why my sister and I got closer together is not because we agreed 100% of the time. It's because we valued the relationship over being right. And by making that choice, it made all the difference.

I feel like there are so many important points that you made. It's been a recent learning and reminder for me that people have different ways that they want to help, different ways that they can or feel comfortable or sort of their go-to. So there is a component of that. And then also one of the things that I think creates a lot of angst in relationship is when you expect people to show up or help in a certain way without factoring in or asking about their preferences. And so there's so much of that in what you were saying that really resonated with me. So what I'm taking away is asking siblings, these are our parents' wishes. How can you help? What fits best with you? And I know nothing about being the bossy sibling.

Obviously I do. But, you know, that important reminder that it's not one person's job to control, take charge and tell everybody what to do. So, and I love the inviting with no expectation. Easier said than done, I think, but very, very important nonetheless. You know, another thing that we did through this journey was I had a personal mantra and it allowed me to focus where the focus needed to be. I wanted my dad to be as happy and as healthy as long as possible. So everything that happened, whether it be a caregiver that came in to be a part of the team that didn't work out, or whether it be a decision my sister made

that I didn't necessarily agree with, I had to put it through that lens. Is this making dad happy and healthy? And if it is, then it doesn't matter. If it isn't, then I'm going to assert some disagreement and try to work that out and say, I don't think this is making him happy, or this isn't in the best interest of his health. And so really, that lens helped me to put myself aside and say, it doesn't matter if they stepped on my toes, it matters that dad's happy and healthy. And so even that was a terminal illness, it was happy and healthy as long as possible. So conversations, I like the mantra being really clear about where you're coming from and what's really important in the grand scheme of everything that's going on.

And I wanted to also ask a little bit about any sort of pre-planning that can be done. So a couple of things come to mind is like trust or will, naming power of attorney, long-term care, or any sort of financial planning that might need to be done. In your experience, what are some things that we might be better off thinking about or addressing as a plan before the fact? And how much do those things impact the choices and situations you find yourself in? Yeah, no, all of them are so important. So we're going to kind of go back over them. And again, we were blessed because my mom was so young when we faced this that my dad did a lot of these things and he knew what was coming and made sure everything was updated and prepared for us. So first of all, that will or trust whatever direction your family decides to go, it definitely needs to be in place and it needs to be discussed. Again, some of these topics people feel a little uncomfortable talking about, but if we don't know what's in the trust, we can't follow the trust once you're gone. So we have to know what's in it and we need to understand your

decisions and nothing can replace that coming from the parents. You know, if they're explaining it was their choice and that way there's no, again, the sibling tension because it's not about me doing something dad didn't want to do. It was about this is what dad wanted. Long-term care insurance. I cannot say enough about how important I feel it is. In fact, when my husband and I were married 11 years ago, I said, he's a farmer. And I said, I won't marry you unless we get long-term care insurance on me.

Knowing both of my parents had this disease. I'm not saying this is where I'm going. I'm saying if I go there, I don't want to impact your legacy. And that's important for me to make sure that your legacy is protected as much as possible. So I personally had long-term care insurance at a young age compared to most people because I just really feel so important. My dad had that for both he and my mom, which was very unusual in the 80s. He took that policy as soon as possible. It doesn't pay for everything, but it does help to support your choices. And so the last part of your question was what impact does it make? It makes a huge

impact because it gives you options. That helps to support your choices. If you have that underlying support financially, then you can afford to bring private carry and you can afford to go to the nicest facility. If that's what you want to do, you will not be able to afford to do those things if you don't plan for it. And the last one, that durable power of attorney is invaluable because with my dad, you know, oftentimes people think with Alzheimer's and we're talking 14 years of progression, you don't see it until it's too late. So dad knew I'm having trouble balancing my checkbook and he asked my sister, Hey, can you help me with this? Will you take over paying my bills? Will you, he was willing to give those

things up. That's unusual. A lot of people are not willing to do that. So those things come up and you need to have access to everything to pay the bills, to be able to follow through with what they're doing already. And so I think if you don't have power of attorney, both medical for someone to make that and financial, you're going to be in a tough spot. So planning ahead, having those conversations, again, they're not comfortable, but the more often you have them checking in, making sure you know their desires and wants the better. Again, I just felt we had marching orders because we understood what my dad wanted and it gave us confidence to make the decisions that we needed to make. And it also kept

us from having disagreements. It's so uncomfortable, yet so important to think about these things and have the conversations. And you already said that didn't eliminate all of the tension, that didn't eliminate all of the stress, but so much of it, I think how much worse would it be if, you know, you are having to not only make financial decisions, but come up with the money yourselves. Exactly. I'm with you though. When I first heard about long-term care, I called my parents and I said, either you're going to get this or I'm going to get it for you.

Either way, I'm good. But this is so important. And I think I bought my own long-term care policy in my early 30s. Yeah. Which I know is very unusual, but I've had a lot of experience in financial services and exposed to the concept of insurance at a very young age. And this just to me was a no-brainer because of exactly what you said. I want options and choices and I don't want financial pressure and frustration to be part of that decision-making process as much as I can avoid it. So what typically do they want? Is it the conversations? Is it time with the grandkids? Is it like, just based on what you're seeing and experiencing, what are the most important themes?

I really think it all boils down to time with you and your family. And you mentioned grandkids kind of separate of yourself, but I think they both go together. We are their legacy. Every sacrifice they've made their whole life was to build a better life for us. And they love and adore us and want us around. And so I think there is an uncomfortableness of losing your independence. So getting to a place where you can't do all the things you used to do, whether it be mow the grass or change the light bulbs or even change out the batteries in the smoke alarms. I mean, we don't think about that, but when we think about a 70 year old mom doing that, we probably don't want her on a ladder doing that. So we need to start to be aware of those things. So time to me is the most valuable thing you can give. And that

is the biggest blessing of what I received in that four and a half years of caring for my dad, though he wasn't totally himself. And though there was a lot of heartache of being forgotten and not having him know my name and, you know, just the drama that can come with confusion that can come with Alzheimer's, anger, hitting, cursing, those kinds of things. I lived through all of those things. Not every day, not every time, but it was a part of the time with my dad. But I also would not have gotten the time with my dad of the laughter and the hugs and the just being together. Dad was physically fit and loved to do those kinds of things.

And so one of the things I rediscovered was playing ping pong. And my husband and I bought a used ping pong table from Craigslist and we put it in the formal family room. And dad and I played and laughed and had such a great time doing something I wouldn't have thought of doing. And I wouldn't have taken the time to do whenever I was an adult living 200 miles away. I went home to visit, but those weren't the kinds of things that we did during our visits. And so the four and a half years I had with him was just filled with memories of blessings as well as heartache.

But I'm just thankful that I had it. And I think as people age, they hate to ask for help. We all hate to ask for help. That's just human nature, I think. But realizing that they need help really only comes from investing time, spending time with them, starting to see the things that they're struggling with, and just offering to step in and help, or to find the neighbor boy who can mow the grass or to give mom a house cleaner for Christmas or for Mother's Day, whatever it is, offering those gifts that will support them as they age. We only know what those needs are when we see them and we can only see them when we're

there. I'm fortunate to have not had to experience this personally yet. And it sounds heartbreaking, but also has the opportunity of joy and connection. So my final question are, what are some things that caregivers should be mindful of to help with their emotional needs. So you talked about having a team that resonated with me. Are there any other things, example, maybe seeing a therapist during that time so you have a place to unload? So I'm going to go back and hit the team a little bit harder again, because my concept of a team is probably a little bigger than a lot of people. And it might come from being a business owner. I think I approached the caregiving with my dad somewhat

in that way. And that I realized that part of our team was the guy who mowed the grass. Part of our team was the housekeeper who came in and kept the house clean because no one lived there but my dad 24-7. Our medical professionals were part of our team. If we didn't have a doctor that was functioning as a part of the team, we found one that would. And that had to happen. Our caregivers, our paid caregivers, had to be a part of our team. If they couldn't buy into our vision and our vision of caring for my dad and keeping him happy and healthy, they couldn't be a part of our team. So hiring and firing was a part of that season. Bringing in the financial advisor and making sure he was a part of the team and understood what the needs were to be able to pay the bills to care for my dad.

All of those pieces were a part of the team. My sister and I were part of that team. My dad's sister was a part of that team. But it has to be a large group and they don't all have to be related to you. So many times caregivers only think they should be able to ask family members to help when really you need to ask the people to help that will step up and do it. And so find the help that you need because that is the number one way you can care for yourself is not doing it all. Take off your Superman cape and get the help that you need to get the support that you need.

I did create a quiz called caringquiz.com. And it is a quiz to see what your caring personality is like. Because we've talked about before, one of the best ways to get people engaged in your team is to make sure they're doing the things that they enjoy doing. And so the quiz just takes a look at the hope team, four different personalities, skill sets that make them better at some things than others.

And you can find that at caringquiz.com. If you'll just go and take a look at that the first day, you'll learn about yourself. And then the second day, I challenge you to ask the people on your team to take the quiz too. Because if you have all hopes on all of Hannah's on your team, and no opals, then you're going to have a really boring group of people, you know, so really looking at those different types of personalities, looking at how diverse your team is, and are your people functioning within their strengths, because that's going to give you the best functioning team. So first of all, just thinking team bigger than most people think. The second one, I would definitely agree, you have to find time for reflection. And that's what I felt like I did well throughout it,

mainly for my coach training was learning to understand I have to slow down. I have to find quiet. I have to ask myself. Now I had a really built in period of time. I had a four hour drive from my house to my dad's every week. And so I, you know, as I pulled out of the driveway, I would start asking myself questions. What went well? What didn't go well? Why didn't it go well? Was it me? Was it him? Was it the environment? What can I control? What do I need to change? So we had a season where dad was up three and four times a night and I was there three nights in a week and I'm a girl who needs her sleep. And it was just hard. I got, I was crabby. I was tired. And I went to my sister and said, okay, I, I need somebody there longer in the morning so I can get a long, a three hour span of

real sleep, get showered and get ready to handle the rest of the day. And so really looking at what's working, what's not working and finding solutions to those things is going to give you a lot more longevity in the process. You can burn yourself out or you can walk them all the way home. And our goal is for you to walk them all the way home. And that's part of why I took a pivot in my coaching practice before I was coaching Christian women in transition and just talking about job changes or divorce or those types of things. But after losing my dad, I just really became passionate to help others realize this is not a journey you can go on your own. And there are support groups and that can be really helpful. But a coach is a person who's going to listen to your heart and ask you questions

you've never thought of before and help you find answers that you didn't realize you needed. And so that's why I'm so passionate about coming alongside others. And again, our goal is always to walk your parent all the way home and still have a life that you love because it's not about one or the other. It's about both. And if you're listening and you're looking for support or resources or want to take the quiz, you can check out Raina and her work on her website. It's aseasonofcaring.com. Or you can follow Raina on Instagram at Raina, R-A-Y-N-A, N-E-I-S-E-S, so at Raina Nises.

Or check out her podcast, A Season of Caring, which is available anywhere you listen to podcasts. Raina, before I let you go, will you tell us a little bit about your book that just came out June 1st, right? June 1st, it hits all bookstores. No Regrets, Hope for Your Caregiving Season. And I designed it in a way, the first 10 chapters is just kind of things that we learned as a family. Medication management, getting those doctors on the team, how to keep the family a unit through this process. And the last six chapters are about self-care. And I'll have to be honest with you, I got tired of hearing about self-care when I was in that season. But I know how important it is. And it really is a process of just really learning how to keep yourself healthy so you can give all that you need

to give. So you can learn more at noregrets-book.com. There's some additional resources from the book, but it is available to all major retailers. Raina, thank you for sharing your story and covering such an important topic. I'm so appreciative. Okay. So I typically close my podcast by saying this is woman's work, but you won't catch me saying that caring for the elderly or supporting our parents is only woman's work because it's not. Of course, different cultures have different expectations and different paradigms about what it looks like to respect your elders and care for your parents. But I am firm on the belief that this is the work of sons and

daughters, of humans in general, who owe a debt of gratitude, of love, of care to those that provided those things to us. Because you can't convince me that in raising their sons, parents put any less hard work or any less unconditional love or any less prayers, hope, or heart than they did their daughters. So I won't conclude by saying this is woman's work. I'll sign off by saying that being there in the best way you can for a loved one that's aging or at the end stages of life is the work of angels, of children, of those who've benefited from their parents showing up in the best way they could. Care, appreciation, and respect. This is everyone's work.