Hope for living, loving and caring with no regrets!

Caregiver Stories and Learning from Others

Episode 26

Rayna Neises, ACC, host, and Aly Neises, RN, cohost, reflect on the conversation with Nancy Bouwens who provided a helpful analogy as she discussed her caregiving journey with her mother.

  • Caregiving can feel like juggling pumpkins – responsibilities come in all different shapes and sizes and it is exhausting to keep them all ‘up in the air’.  Everyone is doing their best not to drop one and create a big mess!
  • We cannot juggle a lot of heavy pumpkins for long, so it helps to stop frequently and think about each pumpkin: Is it still important enough to keep juggling?  Can it be switched out for a lighter pumpkin?  Can it be handed off to someone else to juggle?  Can it be set aside now and picked back up after the journey?
  • Feeling forgotten is common for the elderly so giving of your time, proving care, and offering encouragement helps to improve the quality of their lives.
  • Teamwork is a wonderful way to reduce the number of pumpkins and spouses are an important part of the team. Acknowledging their participation and working to value that relationship while caregiving is critical.
  • When a loved one insists that you must be the one to help them, approach with respect and kindness, but honor your own boundaries.  You cannot juggle all the pumpkins all the time.
  • Asking for help is difficult . . . Avoid this by anticipating your loved ones needs and offering solutions in a respectful, generous, and loving way that hopefully will not add more pumpkins.

Transcript

*Transcript is an actual recount of the live conversation
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 Aly Neises, your co-host and today we will be discussing my interview with Nancy Bouwens. My favorite part about the interview with Nancy was when she talked about juggling pumpkins, I thought that was great. I’ve never heard that before. And I thought what an amazingly accurate visualization.

Aly Neises: 
No. I agree. It was the way she worded it. I was like, that is perfect. That makes perfect sense. Cause she’s right. You know, if you drop a pumpkin, it’s not like dropping something small, it’s heavy, it’s hefty. It’s going to make a big splat and there is no way to put those pieces back together where you have the same pumpkin as before. For me being so visual I just had this image in my head of people, juggling. Pumpkin’s all different sizes, all different colors, all different shapes, but they’re all juggling them and how they manage to do that day day in and day out how exhausting that is too.

Rayna Neises: 
Completely exhausting. And I think that was part of what made that analogy. We hear all the time, just juggling. That’s one of the things we hear about, and you’re juggling everything all the time. But like you said, juggling pumpkins. I mean, I can just see these giant pumpkins and then, small ones and the mess. I mean, the guts, the everything everywhere. When you drop a pumpkin, it’s just such a great visual. And I stopped to think to myself, how many pumpkins? I wonder how many pumpkin’s must caregivers are juggling.

Aly Neises: 
I don’t know. I wonder what the average pumpkin ratio is for per caregiver. I mean, if you think, and it probably depends on a lot of things, a lot of factors, you know, jobs, family, just your everyday obligations. You have those would each be an individual pumpkin, and then you have other stuff on top of that. And I think like my family pumpkin may not look like somebody else’s, it may be bigger or smaller, or it may carry more weight or not. But I think it’s just, it was a great analogy and I love it, every aspect of it.

Rayna Neises: 
Well, and the thought of when I first started caring for my dad. The pumpkins I had in the air. I was teaching. I had the house to take care of. I had a son in high school. I had dinner to get ready, groceries to buy, a house to clean. I mean, there were just a lot of pumpkins. And as the caregiving season went on and I realized, Hmm, this is going to go a little longer than I was thinking. Then I put down the pumpkin that was teaching. And I picked up a lighter pumpkin at the time, which was school for my life coaching. Just through out my season kind of took out some pumpkins added in some pumpkins, but really, I think the key for most caregivers is to realize you can’t juggle everything. This season, the caregiving pumpkin is good size and it has a lot of weight and sometimes it’s not as heavy as others. You know, you get into a rhythm and a rhyme and things are going well, but then illness comes or something changes and that pumpkin might change out. It might be heavier again, but just realizing that really stopping to think about what pumpkins are you juggling. And which ones are really, really important are very, very important. And which ones are, I need to set this aside for the season right now, and I can come back that pumpkin’s still going to be there. It’ll be okay. Being wise enough to do that can really make a big difference.

Aly Neises: 

I mean, we’ve kind of talked about that before too is like figuring out what is most important for you during this season in realizing what things you can divvy up or give to someone else or be okay to ask for help. You don’t have to juggle these pumpkins alone either. The heftiness and the weight of some of those pumpkins can wear on you. And so if you can give maybe the larger pumpkin trade it for two smaller ones and give one of the smaller ones to somebody else, you’re going to be able to juggle those pumpkins longer so you have less chance of dropping them. And if we drop them, like we already talked about, it’s a mess, a big mess. So, if we can avoid that as much as possible, the better off we’re going to be. And the longer I think we can handle this journey as well, because this is all about walking our parents all the way to at home. And so sometimes we don’t know how long that caregiving journey is going to be. So it’s okay to reevaluate your pumpkins and figure out what’s important. And what was important in the beginning may not be important a couple of years from now. And that’s okay.

Rayna Neises: 

For sure. And that was one of the things that I thought was so beautiful as Nancy talked about how important it was to keep her mom encouraged and how frustrated her mom is feeling about aging in general and just being so old. And being restricted probably by her age at this point. I remember when my great aunt got to be 90. She used to say to me, Rayna, I think God just forgot I’m down here. And it’s such a funny thing to say, but it’s just really sad to think about, to realize that you feel like all my friends are gone. I’m the only one here. And I can’t do all the things I wanted to do at one point. Remembering that walking them all the way home is so important and what a blessing it is to have Nancy there with her mom. I mean, her mom has to know that Nancy’s making the sacrifice to be there and that Nancy is making her a priority. And I’m sure that that is encouraging even as she feels discouraged at times.

Aly Neises: 

What Nancy’s mother is going through is very common feeling. In my line of work, I’ve taken care of people that are as young as in their thirties, even younger actually, but I’ve also taken care of older people. I’ve had a lady I used to take care of that was over a hundred and she would tell me all the time, you know, I just, I don’t, I think God forgot me. I think he pulled my number and put it somewhere and then forgot where he put it, and now He can’t find it. And here I am waiting for him every day and I’m ready to go. She had outlived her husband by a long, long time she was starting to outlive some of her children, which is, we all know is difficult. You know, friends and other losses. She had endured, she’s seen a lot of life in those hundred years and she was done. So I love that, Nancy even mentioned, what do you say to somebody like that? Like I just constantly try to encourage her and breathe life back into her, but she’s right. That’s difficult too. So I do think you’re exactly right. That it is a blessing that they are there. It’s a blessing that she can be there during this time, just to help take care of her. And I do think too, it’s probably given her a lot of quality of life. She wouldn’t have had any other way and be very lonely living alone at 92 and so I know that they’re just in the basement, not that far, even if they don’t interact 24 seven, there’s somebody that’s close and it’s somebody you trust and you love, and you know, it’s not a stranger either, and that’s beautiful.

Rayna Neises: 

Definitely. And so that makes one of those pumpkin’s that I didn’t even say, but the emotions of the person that you’re caring for, and then another pumpkin that you’re juggling is your emotions and how all that impacts things. But I also liked how Nancy talked about how supportive her husband is. And I can kind of visualize her, juggling her pumpkin’s and saying, Hey babe, catch this one. And just handed it off to let him juggle it for a little while. It was such a beautiful picture of how they’re working together to make the best for her mom.

Aly Neises: 

I liked that too. And that’s exactly where my mind went is like, she’s not the only one that’s juggling these pumpkin’s, he’s also juggling them too. She mentioned that after work, he comes home and he sits with there and they either watch sports or Jeopardy or whatever. And it’s yeah, like it’s not a big sacrifice necessarily. But it’s something that I’m sure means the world to both of them, that little blip of time. And I’m sure to Nancy too, just to know that he’s there and she doesn’t have to worry for 30 minutes, an hour, couple of hours. What a relief to know that you’re not juggling those pumpkins alone, too.

Rayna Neises: 

Teamwork is so important and acknowledging it too, you know, she really acknowledges, she said he needs to be a Saint. You know, when all of this is, this journey is over. So just really acknowledging, I look back at that and feel the same way about my husband and the willingness that he had to carry on and do what needed to be done at home. When I was up in Kansas city, caring for dad, it’s just such a blessing to have that team member who isn’t saying, Hey, when are you going to do this? But rather is everything okay. Are you guys doing all right? How can I support you? You know, just those simple things. Do you need the world changed? I’m just remembering those things that kind of help you juggle better.

Aly Neises: 

I think it’s great that it’s also somebody that you’ve chosen to do life with. Mean, I know that that’s something we talk about is that this life partner that you choose to do life with that they’re supposed to help you walk this journey. But sometimes I know that’s difficult, especially when you have a big restraint, like caregiving for a loved one, especially the parent, like she mentioned, it’s put a stressors on their relationship that wouldn’t have been there otherwise. So I think taking the time, they try to have fun. Spontaneity and some purposeful dates and things like that. Just spending quality time together. Just the two of them too, is something that they’ve really put forth an effort for. And I think that’s something that has really benefited them it sounds like as well.

Rayna Neises: 

I liked when she mentioned that friends had come in to keep an eye on her mom, when they got away, it sounds like they’re not doing that as much, but they really need to make sure they focus on that and, and plan ahead and find a way to get some of that time together. Since Nancy is the only one who’s able to help in their family at this point. Bringing alongside some of those other caregivers that can support Nancy is so important. It’s challenging though, because many times the person we’re caring for wants us, like she talked about after the surgery, she felt like, you know, her mom was like, no, I need you. I need you right here. And sometimes that’s tough whenever her mom was already really open and said, Hey, I’d love to have you here. Move in here. So she was being aware and open to having help from Nancy. But so many times parents, number one, won’t ask, or number two, won’t be willing to take someone else. They want you to do a hundred percent of it, and that can make for a really difficult season.

Aly Neises: 

I agree. And we’ve kind of mentioned this before, understanding your own boundaries and your own limitations. You know, Nancy had said like, knowing I need to go back downstairs. I’m not that far away. I’m still here. Just knowing that she had hit her limit and it was time to respect your own boundaries and take some of her own, autonomy back. I think is very important, but I think you’re right. That a lot of times, as we age, especially here in the Midwest, I think we are very determined and independent and willing to do whatever it takes to get something done. And so I think a lot of times we’re more reluctant. Shouldn’t speak for every Midwesterner everywhere, but I do know how my family is and how my husband’s family is, is that we’ll do whatever it takes to get things done. And if that means we have to fight tooth and nail for kind of do it. So as we age, I think. That makes things more complicated for family, especially because we are reluctant to ask for help. And I think part of it’s just a prideful thing, but I also think we, we don’t want to burden other people. So I think some great ways that as a family remember is that we’re going to probably see those things that mom or dad need help with before they do. So just being very sensitive to that and trying to find ways to help them without just doing it for them, because that would be very degrading almost. And it would hurt my heart if somebody would just take over it for me, because I think I can do that. I do it. It’s fine. To do it in a respectful way and a calm way, I think is the key.

Rayna Neises: 

Relationship is just a key, that relationship is being able to navigate that with respect and kindness and at the same time concern, you know, I’m noticing that it’s really hot out and I know that, it’s really hard for you with the heat. Is it okay if we mow or I have a great lawn guy and he’s looking for somebody else to mow for, are you just offering those things? Because everyday maintenance of life can be challenging as we age. We don’t have the energy we once had. Our body doesn’t regulate heat the same or cold. So those sidewalks need to be shoveled, and you certainly don’t want them out there doing that, just noticing some of those things to kind of come in alongside. And problem solve with them offer suggestions, offer your help, but also offer to find some help because you don’t always have to be the answer. I think sometimes in the beginning, there aren’t very many of those things. So we put ourselves in that place and say, Hey, I’ll do it. But then the more we do that, then the more we’re putting on our plate and we already have our own responsibilities. So it’s that creep of caregiving responsibility that comes in and it is important to be there to support, but it doesn’t mean you have to do at all. Some of the things that you need to do that nobody else can do go to doctor’s appointments. Sometimes that can be a little tricky too. I know my aunt mentioned whenever she had her daughter with her at doctor’s appointments. It felt like the doctor no longer talk to her, but just talk to her daughter. And so they had to really have a heart to heart about it because she got to the point where she didn’t want her daughter to go with her. And it really hurt her daughter’s feelings because she wanted to know, and she wanted to support and she wanted to make sure she was getting all that she needed. And my goodness, always helps to have more than our ears listening because so many times there’s a lot going on. So having that extra set of ears can make a big difference, but not when you feel disrespected because the doctor doesn’t look at you anymore or acknowledge you anymore. So after that conversation, then they were able to negotiate that between the two of them. When the doctor asked a question that he should have been asking my aunt and my cousin said, mom, what do you think? She didn’t speak for her. She jumped right in and just directed it back to where it belonged. And they were able to navigate that. So there are some things that only we can do as family members, but there are some things that someone else can do. And so taking the time to really take a look at what you’re doing again, kind of where we started, what pumpkins are you juggling and which pumpkins have to be you and which pumpkins can be someone else. And it might be a teenager from church. It might be a neighbor. There’s just all kinds of people around. We just have to keep looking and asking for help whenever we get to that place. But I think it is difficult. It’s difficult for all of us to ask for help even we say it all the time for caregivers, they have a hard time asking for help. That’s why the person that they’re taking care of has a hard time. It’s just something we don’t do well. So making that list and really seeing what can I hand off, which pumpkin can somebody else handle really can make a big impact on your self care, on your ability to have that full cup, to be able to pour from.

Aly Neises: 

So one of the things that as we get older, I mean, I, I can already attest to this. I have nephews that can use my iPhone better than I can. So I know that as people, age and technology changes and it’s changing rapidly all the time, there are new apps, phones, laptops, tablets, anything, and everything could ever need. It’s always constantly changing. And my grandmother will always tell me once I figure something out, they come out with something new and then I have to relearn it. So one thing we did is when they both got smart phones and my grandma will tell you, like, we never thought you could carry a phone in a pocket. A phone was attached to a wall with a cord. Even when they got a cordless phone, like that just blew her mind. So here we’re talking about smartphones and they also bought tablets. And so we, as a family just sat down and had these classes essentially for them. What it was was me helping them maneuver technology, and we went really slow and explained things so that they could understand. And I think that was a great way. Like they didn’t really ask for it. They didn’t. Have to ask for it. I just knew that they needed it. And so I just showed up one day and I said, all right, grandma, let’s try to figure out your phone today. Let’s get to where you can at least make a phone call or let’s get to where you can text people. Now she texts all the time or she does video chat. I get a video chat request at least once a week. So she’s come a long way. But I think that that’s a great avenue to start with some of these people that are more reluctant is technology. Also, we’re living in a pandemic and we’re not having that contact in person as often because we’re trying to protect each other. So technology is a great way to connect and we’re also in an age where we don’t all live in one area anymore. It used to be very common that families grew up in a small radius and now we’re all across the United States sometimes across the world. And technology is a great way to connect. And see people without being there. It’s also a great way to break down some of that isolation that could be happening. So if we can help, even in that way, with some of these people that are a little more reluctant to ask for help and do that in a way that’s respectful and generous and loving, then I think there’ll be more apt to say, you know, I’m having a little trouble cleaning out the gutters or Hey, those light bulbs are burned out. Do you think while you’re here, you could change them, stuff like that, or even while I’m there, like, I might notice some of those things, grandma, can I get that stuff down for you for Christmas or whatever, little things. I think it’s just a more of that give and take is going to make it a lot easier too.

Rayna Neises: 

Completely agree. The relationship is the key. Being able to keep the relationship going and kind of tackling things together as a team. That helps them not feel like they’re being a burden or that you’re bossing them around, but rather you’re just right alongside helping them to be able to negotiate life as they age. I love that technology is always changing, but amazing all the things that they can do. I talk to caregivers that have the little portals that they’re able to see their parents and talk to their parents that are a long way away. And it really does just put them at ease and lighten their load a little bit, knowing that they can check in and ask about, did you take your meds and that kind of stuff. So I think that’s great. Listeners, I hope that you found some interesting things to think about today. I come right back to those pumpkins. What pumpkins are you juggling? What pumpkins can you ask for help with? Who’s on your team? Can you make sure that the person you’re caring for is a part of your team and be able to work together to problem solve when you’re feeling burdened or overwhelmed by the pumpkins that are flying around you? So if you find yourself in a place where your pumpkins are overwhelming, I would love to have a conversation, so feel free to reach out at www.ASeasonofCaring.com and see if we could walk alongside each other to help support you in your pumpkin juggling. Just to 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.

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Meet Your Hosts

Rayna Neises, ACC

Your Host

An ICF Certified Coach, Pod-caster, Author & Speaker, offers encouragement, support and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.

Rayna Neises & Aly Neises

Aly Neises, RN

Your Co-Host

A registered  nurse, has worked in healthcare for over ten years. Currently she is a case manager for hospice taking care of terminally ill patients and their families.

Her passion is to help and care for others.

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4 Things you need to know as you begin your season of caring

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