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 I want to welcome Aly Neises as we continue the conversation around what Deb Kelsey-Davis shared with us about taking what you’ve learned in your caregiving season to be able to handle the crazy of the season that we’re in today.

Welcome, Aly. It’s great to have you here today.

Aly Neises: It’s good to be here.

Rayna Neises: I loved Deb’s hearts and just her willingness to say, I didn’t do my best job in the first caregiving season, and I’m thankful that I had that season. So I can learn things not only about myself, but about what will make me a better caregiver and how to care for my parents better. I could really relate to that.

I know the caregiving season with my mom was a long time ago. And I didn’t know much. I was a lot younger, but I’m thankful for the things that I did learn in that season and how I was able to then use those things in caring for my dad. It was great to hear her heart of, I didn’t do it all right.

Aly Neises: Yeah. I liked that too. I liked that she could like was upfront and honest about it. Like, Hey, I messed up and it’s okay.

Rayna Neises: I loved that because we don’t do that. I don’t do that. And so I just, it would almost startled me each time she said it. I wasn’t very good at that, but it was really neat to hear that because we do, we only learn and grow when we’re willing to admit when we didn’t do it well.

Aly Neises:  Yeah, I agree. Also I like that she talked about, The things that caregivers have in this like tool chest that we all kind of learn just by being caregivers and how those things can kind of help us through this chaotic world that we’re kind of living in right now. You know, she talks about. How we’re as caregivers every day is not the same.

You kind of learn how to deal with that chaos and go with the flow more and kind of just being more flexible and how that can help dealing with the everyday changes that are happening on the news and in our daily lives.

Rayna Neises: Definitely, It’s unique season. We’ve not experienced anything like this before, and most people are just scrambling and struggling to deal with all of the changes that are happening. But I love the fact that as caregivers, we do have so many more tools in our toolbox to handle chaos because routine and rhythm are soothing for us and we love that, but they aren’t standard in a caregiving season. And so the tools that you have that have helped you find the rhythm and helped you find the peace in your chaos of caregiving seasons, can be what will help you now. We’re all trying to find our feet. We’re all trying to reestablish those routines and figure out what exactly we need to be doing to take care of the people that we love right now.

The chaos of the world is affecting us.  We do know what things bring us peace, what things help us stay sane, what things do not work. Being able to dig in that toolbox and really find those tools can really make a big difference. And I think the pivot that needs to happen right now is we, we know how to do this, so let’s, let’s figure it out.

Let’s not that we can keep doing what we’ve always been doing just because we’re already isolated. We are being impacted. As caregivers you don’t have the same support. You don’t have the options of the same support because so many people are staying home. but you do have some choices. As you’re trying to make the decisions, if it makes sense to have people coming into your home and helping to care for loved one it might not always make sense. You might want to limit the number of people you have coming in. But at the same time, you have to take care of you as well so knowing when to say, no, I need this support, really important.

Aly Neises: No, I agree completely. I think as caregivers, you’ve learned how to,  day to day, now that day to day is going to have to change because of everything else that’s going on, but you still needed to be true to the things that you really need. Don’t be afraid to express those needs.

I need a caregiver, an outside caregiver to come in still at least once a day to help dad or mom with this or whatever, whatever that looks like for you. That’s okay.  People are considered essential workers, so we will continue to show up at these times, you just have to tell those people what you do need.

I do think it’s also important to understand that the things that we reached out to you before probably may not always look the same. I know a lot of support groups that were held in churches and other avenues are now being closed down because of the Corona virus. So finding other ways to get support and have somebody to help you with those kinds of things is also going to be an important.

So things like technology is going to really help with that. There’s a lot of online support groups. I know we’ve talked about in the past.  Facebook. There are phone calls and things like that, reaching out to other people. Just verbalizing those needs when making sure that you’re filling that avenue as well, so you can be the best caregiver that you could possibly can be.

 Rayna Neises: [00:05:53] One of the things that does concern me when I think about all of our listeners that are in their home with their loved one is that heavy burden that can be there when this is it 24/7 I know as I cared for my dad and his, you know, ability to carry on a conversation wanes. Those three days can get really long and I really looked forward to when the caregivers came in and we can have a conversation that just didn’t have to do with putting on your jammies are doing the basics that happened with the everyday conversation with him. There’s still the phone, there’s still other ways to have those conversations. If you’re finding yourself in a place where you’re feeling really stressed or down. You got stop and think about what has changed and what you’re missing.

What is it that your needs are not being fulfilled right now, and how can you find a way to have them fulfilled? It might not look the same, but you can find that way. And so make sure you’re taking the time to just self-reflect and feel what’s happening in your body. If you’re feeling stressed, if you’re feeling that anxiety, you know, take the time to put your finger on what it is and get some help.

If you want to hop online and schedule a time to talk to me so that I can help you talk through what’s happening and why you’re feeling that way. I’m more than happy to do that, but I really want people to realize that there are other ways to get your needs met and to make sure you are looking at doing that.  You can’t just neglect yourself in the middle of this crazy season.

 Aly Neises: Right.  Something that our caregivers have to understand is that as you’ve learned on caring for another person, is that you can’t control everything. And so being able to identify the things that you can control and try to take that control back is going to help us get through the day to day stuff.

I have realized that the news is inundating every part of my life.  I get a lot of emails and Facebook invitations and the newest guidelines and all of the current updates on Coronavirus and what’s happening in the newest numbers, and it was overwhelming, so I had to limit.

My access to those things because I can’t control what’s happening outside of my own home, but I can control that part.  Understanding that some of that is overwhelming and that’s okay but taking some of that control back just so you can find that balance and so that you can handle the day.

Cause sometimes it’s just too much and that’s okay.

Rayna Neises: [00:08:35] It is.  I’ve enjoyed hallmark movies recently, and picking up a book, I’m listening to music. You know, a lot of other things that can just eliminate what’s happening. It’s there whether we pay attention to it or not, when we certainly don’t need to pay attention to it 24/7 so great suggestion.

Aly Neises:  100%.  Another thing that Deb even mentioned is how important it is to be present when we’re caregiving for another person. And I think that’s hard on a day to day basis in a normal situation, but it’s a very unique situation that we’re in, so I think it’s even harder to be present.

And so, have somehow to kind of make that happen? Be more purposeful with those times, especially now

 Rayna Neises: Yeah. It’s funny cause we throw around a lot of those words, be present, be present. And sometimes we don’t even really know what that means. So, the first thing I went into kind of talk a little bit about is just what is presence? You know, what is being present? It’s being in the moment is the easiest way to put it.

It’s paying attention to your feet on the ground, the chair you’re sitting in and the person who’s right here in front of you. Our minds especially because we want to care and we want to do a good job and for who we’re caring for. We’re thinking of all the things that need to be done. What am I going to cook for dinner? When am I going to get the laundry done? You know, when was the last time I did meds? When do I need to roll this person?

They’re just all of these two dos that are in our mind and they are things that are important and they have to be done. But in this moment right now, taking that deep breath and feeling the air come into your lungs and letting it go.

Looking around and seeing what you see. What is your loved one doing right now? Is the sun shining in the window? Do you hear a bird? Do you hear the dog snoring? You know what exactly in this moment right now is happening. And then being able to kind of move over into what you’re doing. Are you focused right here and now?

Are you borrowing trouble from the future? Are you worrying about things you can’t control? What are you doing right now? Are you folding laundry? That’s great.

How can you then move into engaging with the person that you’re with? One of the things my dad loved was coffee table books, baseball books had Babe Ruth and famous old players and he would just sit and flip through those books.

It was a great independent thing for him to do, but it was also a great time for me to engage him right then and talk about, Oh, who is that? What are they doing in that picture, dad? And getting. Him to tell stories, because oftentimes looking at that picture would then bring him into his own story about, I remember when I did this or that, and he would tell me about a ballgame, and that engagement is being present right there with him, listening to his story, watching him smile, seeing the sparkle in his eye.

Just noticing the little things that are happening right here and right now, like Deb mentioned the fingernail polish on her mother-in-law, Eva, you know, it brought a smile to her face to see those fingernails. Even in the midst of that sorrow of having her gone, there was still that glimmer of reminder of what fun they had had while they were doing that.

[00:11:59] So being present is an important part of living, loving and learning in that caring how to be present in the middle of it. Because really those moments of being present are what lets us look back without regret because we have those things to cherish. They are a precious and there are only as many of them as we intentionally create because there’s always a million things to do.

So taking the time to create those moments, to feel your breath, to think about, what’s going on around me, what am I doing and how can I engage the person that I lead? We can’t do it 24/7. We can’t even do it three hours out of the day probably. But it’s those little moments of time when we do think about once they’re gone. So it’s important to do, not easy, but really important.

Aly Neises: I agree completely and I love how the finger nails and how that still brings a smile to Deb’s face when she thinks about it and the laughter and all of that as I work with terminally ill patients. And so we talk a lot about that just alone with my patients. Even they’ll talk about the little memories that they remember, and it’s simple things.

The dew on the grass or the smell of cut lawn, the way that their child used to laugh when they did certain things. Those are the memories that we hold on to. It’s not the big life moments usually. It’s the small little things that make it easier when that journey’s over and when you’ve walked your family all the way home. That’s going to make it easier for you to grieve and have those memories.

Rayna Neises: So true. And, and I think another thing that you just said that’s so important is having the conversation with the person that you’re caring for. We avoid sometimes just talking about the hard stuff with the person that we’re caring for. And I know in my situation, my dad was limited. We didn’t always know what was getting through, but if we didn’t ask, we would never know.

And I think asking the person that we’re caring for, especially in this unique season, whether it seems to be so much chaos and concern about the future and, and what’s going to happen, I can imagine it would be easy to just avoid the subjects and not really think about how the person that we’re caring for is handling it, what they know, what they understand but it seems like to me it’d be pretty important.

Aly Neises: No, I agree. And I think that’s also part of being present is just identifying that whoever we’re caring for also has needs and concerns and fears. Understanding and kind of meeting them where they’re at with those things. I know with this virus and everything that’s on the news, it’s freaking people out.

Just having that conversation and having them express their needs to what they need from you as their caregiver. And it may be really simple things like they need you to wash your hands or often, or they need you to take their temperature every day just to calm their mind, to know that that’s okay. And that’s okay to take those moments and do those things for her or him because I think it’s going to help you as a caregiver also to have some peace of mind if they’re more at ease as well.

Rayna Neises: Well sometimes we worry about our turn something into something that it really isn’t. And so something as simple as saying, no, mom, you don’t have the virus just because you have a little cough. The virus starts with a fever and you don’t have a fever, and actually being able to reinsure her that you don’t have a fever and you’re okay.

It’s just a little cough, or I don’t have a fever. Yeah, I coughed. It’s allergy season. You know, but I don’t have a fever. I’m not bringing it in here to you. Just helping to alleviate those fears for them as well can be just such a gift. Because I think sometimes we just get busy, think about what, they need in that way.

Aly Neises: I think too, as caregivers and as humans, I think we’re in our heads a lot. And so if we’re in our heads like mullein, all of this over, it’s only understandable that they also are mullein, all of this over and trying to figure out things. And I think just like you said, having a conversation in just that back and forth of trying to talk it out.

I’ve found a lot of people are very anxious about this virus that’s going around. And like you said, like something like a cough really gets people on edge. But if we talk about. How long have you had this cough? Well, I’ve had this cough for a year and a half. Well, then it’s not coronavirus and this look of relief.

Oh, you’re right. Like that’s completely true. It’s just, I don’t think people even understand how terrified we are in our everyday lives, let alone how somebody else might be without having that conversation. Treating them as a human and like just validating like, no, this is scary. Do you want to talk about it?  You know, what are your fears? What are your concerns? What can I do to help? I think even that, what can I do to help? It’s such a simple, that’s not only applicable to right now, but throughout this whole season, what can I do to help you?

Rayna Neises:  So important. It really does bring it to a level that the person can share their heart. And there might not be anything you can do. But listen and listening really does help. But I never have quite figured out how getting it from our brains out of our mouth can make us feel so much better, but it always does.

And being that person that just is listening and reinforce that you love them and that you’re there for them and that you can help however you can help, you’re going to do what you can do. That’s such a gift and it’s so important.

As we listened to our loved one that we’re caring for and their needs, one of the things that reminded me of was the conversation with Deb when we got to talking about how saying no opens the door for other people to say yes. And my situation of bringing other people in, how it helped my dad and it gave him different personality and different people to be around and in this season of crazy,  maybe say no and allow others to say yes because it is a little crazy.

Aly Neises: Yeah. I think we have to understand that it’s okay still to say no, that you still need to have that personal boundary, whatever that looks like to you and be able to verbalize the needs that you have. And understand that it may not be exactly the same, but there are probably other options that people can help you maybe they can’t come be this you and your loved one, so you can run out and do errands, but maybe they can go get groceries for you or run another errand for you just to give them that opportunity to even help can maybe alleviate some of that stress that you’re feeling.

Rayna Neises: I think sometimes that no also opens the door to a yes you hadn’t even thought of before. So, when you’re thinking of cooking all the time. It’s not my favorite thing to do. I used to take my dad to see my aunt and we would have hamburgers on Saturdays, and we looked forward to the outing. We looked forward to something different that I didn’t cook.

Just having the opportunity to have someone drop off the hamburger so we enjoyed something other than something I had to cook would have been a blessing. Just allowing the blessing of letting someone else be your support, be there for you.  Even if they just come while your loved one is napping and they keep an appropriate distance. for you to be able to get out of the house and walk the neighborhood or something. Finding those ways to allow the support that you need now is just as important, if not more important than it was a month ago.

Aly Neises: I agree. Checking in with yourself and making sure you are good. So, you can help take care of this other person. Like we’ve talked many a time before the season doesn’t have a time limit. It doesn’t always know when the end is. So, we just have to take it day by day and moment by moment. And I think right now, especially with the surrounding unique situation we’re in, it’s even more important to make sure we’re taking care of ourselves as caregivers so we can help take care of others.

Rayna Neises: That’s the reminder every time we get back to that same place, you have to take care of yourself. It’s so important.

We’re so glad, listener, that you joined us today and we hope that you have walked away with some new ideas on how to be present in this moment with your loved one, so that you will have those opportunities to look back with a smile, your own funny story with your loved one once they’re no longer here.

Just a reminder, A Seasonal of Caring Podcast is created to support family caregivers. If you have financial, legal, or medical questions, be sure to consult your local professionals.

Thanks again for joining us and we’ll see you next week.