Hope for living, loving and caring with no regrets!

ep 131 caregiver warrior

Episode 143

Rayna Neises, your host, speaks with Angie Rischpater. Angie is an occupational therapist with over 20 years of experience. She helps family caregivers by teaching both a preventative and restorative approach to care which allows the caregiver to live a life beyond caregiving. While still working part-time in acute care at a hospital, Angie also offers private and group caregiver coaching. In addition, she writes and is a webinar host for Caregiving.com. Angie shares her mission, to ensure that caregivers have the power to design their experience using a therapeutic perspective, and provides the following insights:  

    • (6:53)  Don’t do everything for them. Instead, coach the person toward greater mobility, cognition, and independence.
    • (10:00)  Think about how you can work towards a common goal with the person you are caring for.
    • (13:08)  Figure out which deficit area is impacting you most.
    • (16:00)  Eliminate the barrier areas.
    • (17:06)  Become more of a coach than a caregiver.
    • (21:00)  Falls are almost always avoidable.
    • (25:00)  Investing upfront to get your time back in the end.  
    • (26:08)  Make every activity that you can into a therapeutic event.
    • (27:47)  Find Angie on Facebook at Caregiver By Design (https://www.facebook.com/caregiverbydesign/), on TikTok, and on her podcast (Caregiver by Design) where ever you get your podcasts.
    • Thank you for what you do!

Transcript

*Transcript is an actual recount of the live conversation

Charlotte Bayala: 

I sat down and I was like, All right, so I get it. Like I need to dial back and make time for myself and bring back these things that I spend all of my working hours trying to teach people to do. And so I did and things definitely became a little bit more balanced.

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 special guest, Charlotte Bayala. Charlotte started her caregiving journey in 2013 when her husband was diagnosed with incurable thyroid cancer. After spending some time stumbling through life as a caregiver, she was able to turn things around and use her training and experience as a yoga and meditation teacher to finally start enjoying her caregiving life. She uses her skills and her experience as a caregiver to help caregivers find easier ways to love their lives again and support them on their way to thriving instead of just surviving. Charlotte is the creator of the Love Your Caregiving Life podcast. The Caregiving Confessions Monthly digital magazine and continues to teach virtual yoga and meditation classes. You can find her at www.loveyourcaregivinglife.com. Hi Charlotte. It’s great to have you here today.

Charlotte Bayala: 

Thank you. Thank you so much for having me.

Rayna Neises: 

I just, I love the name. Just love your caregiving life because it’s so important to learn to do that and so hard.

Charlotte Bayala: 

Yes.

Rayna Neises: 

I love that you’re helping people be able to do that for themselves. So tell us a little bit about how you became a caregiver and what that journey looked like.

Charlotte Bayala: 

Yeah. It was, wow, we’re almost at the decade mark of my husband’s diagnosis. You know, we were just living our lives, you know, having fun as a fairly young couple. My daughter, I believe, was around eight at the time, and everything, seemed to be going pretty good. And one day he wasn’t feeling well and he went and had this lump in his neck checked out, and it was fast. It was within a week when he found out that he had thyroid cancer. No joke. This, it, it was like within a second. It was at the end of his sentence of him telling me, because unfortunately he found out without me nearby. Everything changed. It was like, A flip, a flipped switch was on, and I was like, Holy cow. Like, what, what, what? You know, you have these, these moments where you’re like, no, that’s this, you know, this isn’t really happening until it really starts to hit you and you try to figure out what, what does that mean? And so we went through the normal kind of phases. Coming to terms with what it meant for our family. All of the emotions that we all went through in different ways. Him as a person who found out that he has cancer, and me trying to figure out how do I not let this change my world so drastically that we just come to a place of not enjoying our lives. Right? And so it, it was a good six months of me trying to figure things out. Me trying to just research and be prepared for doctor’s appointments as if I could just cram, you know, all of oncology into my brain. But I really wanted to be as informed as I could, and I wanted to make sure that he was getting the care that he needed, that nothing was gonna slip through the cracks. And so at one point a nurse told me, I really hope that I could have someone like you as my caregiver whenever I need it, because you are very persistent. And I was like, I didn’t take no for an answer. And, and that took a lot of energy. And all of my focus was how do we fix this? With little spurts of me going to work and I was teaching full time as a yoga meditation teacher, and I very quickly found myself overwhelmed and, contacted my doctor and said, Look, this is what I’m feeling. This isn’t like, I don’t think I can maintain this. And she said, Well, have you ever considered meditating? And I got so angry. Cause like, what do you mean that’s it? Like That’s what I do for work. And what I realized, that was the kind of wake up call that I needed because I had all of these systems in place for caring for myself when life was easy. And as soon as I became a caregiver, I went into this mode of kind of like protection. Like there was a threat to our family. And I needed to, to protect us from it. And everything for me kind of fell to the side. And so once I real, like once she said that and I got over kind of the anger, and frustration, right? You know, when someone tells you to do something that you should have thought of doing in the first place or You know, I sat down and I was like, All right, so I get it. Like I need to dial back and make time for myself and bring back these things that I spend all of my working hours trying to teach people to do. And so I did and things definitely became a little bit more balanced. I was able to really work on boundaries, but what I realized was, If me a person, who lived in the world of self care essentially, right? Could so quickly lose sight of how to care for myself. How difficult is it for someone who didn’t have a good kind of hold on caring for themselves and finding themselves as a caregiver? And who am I to keep that to myself, right? I needed people to tell me that I wasn’t the only person feeling resentment and regret and shame and fear. And I didn’t have that because at that time we didn’t have, you know, Facebook groups and, and things available to us. So I just thought, well, I’m just gonna tell people about my stories. I know we’re all kind of going through the same thing no matter who we’re caring for and what our situation is. So I’m just gonna be vulnerable and, you know, share myself and then also share things that I know can help so that they don’t have to spend years and tons of time trying to figure it out.

Rayna Neises: 

It is amazing how the diagnosis just changes everything and depending on that diagnosis, depends on how quickly it changes everything. With cancer, you’re immediately, like you said, just trying to learn everything you can. All the options that are out there, because there are so many different voices,

Charlotte Bayala: 

right?

Rayna Neises: 

what direction do we go? How do we handle this? Something like Alzheimer’s and our family. Obviously when my mom was diagnosed and I was just a teenager, it hit me that she was dying. That’s kind of what I got out of it. But of course it was a 12 year process. But then when my dad was diagnosed, because of already living through my mom’s passing and that journey, it was like this sudden change of everything because of knowing what was coming. So many times. As a caregiver, I don’t think we really know what’s coming. We don’t really know what the battle looks like. And I do think that’s part of why it’s so important to have voices like ours that are encouraging others and are farther down the path, whether it be post caregiving like me or still in the trenches, but almost 10 years out like you.

Charlotte Bayala: 

Mm-hmm.

Rayna Neises: 

can be such an important voice of encouragement and of knowledge. You know, so I love that our listeners are here, that they are listening and they’re learning, but I think it’s also so important to have different voices. So I appreciate, that you found that voice to be just real and honest and to share your journey because it is so important. As you do that what have you found has been most helpful in sharing your voice for you?

Charlotte Bayala: 

Getting over myself, I think as just normal humans and definitely as caregivers, you know, if you are not a hundred percent secure, in what you’re doing and feel like you have a handle on things. The last thing you wanna do is tell people about your experiences. So I had to let that go. I mean, we can’t be perfect at any anything really. We just have to come to a place where we feel happy with the results. Right? And so In the beginning I thought, Oh, I’ll just say words into a microphone. Like, I don’t really do things with a lot of planning. I just, I’m like, Oh, that sounds like a good idea. Let me do that. And so I started podcasting and I would in the very beginning, as I’m scripting out what I’m gonna say, cuz I couldn’t do it on the fly because all I would do is cry. So I realized that this wasn’t just for other people, this was for me to process things that I wasn’t able to because I really didn’t have a person to talk to that would actually understand and ask, you know, ask the questions that would matter. And for me to be able to say things without worrying about offending them. Because the worst thing is, you know, when you talk to a friend and then, or I even have some people listen to my podcast who know me, and then they might say, Did I do that? I’m so sorry if I did that. I’m like, No, it’s not about you. Like, this is not me. Somehow, weirdly trying to tell you something through a podcast episode, right? This is just me sharing myself. And so I think it helped me, helped me understand more of what I needed going forward into caregiving and how better to help people understand that doing this long term, whether it’s a few weeks, months, or decades. We shouldn’t have to feel like we need to give everything up in order to do this, this selfless thing for the person that we love, the person that we care for, and that we can have both. And so I think it really helped me understand caregiving a little bit more by sharing and voicing how I felt about things and you know, just putting myself out there.

Rayna Neises: 

That point is the one point that I also camp out on is that this is a new lifestyle. This is not just, I can lay it all out and then I’m okay

Charlotte Bayala: 

Right.

Rayna Neises: 

You know, as a caregiver, so many times I meet those caregivers that have been doing this a long time, that are angry and resentful and have given up everything about who they are except this identity as being a caregiver. And I always say I feel like it’s so important for people to understand from a daughter’s perspective, which is my role. I’m my parents’ legacy, they would never want that for me. And I’m sure your husband as well, he fell in love with who you are, all of you, not just that one piece of you. And so to watch you give up everything is not bringing joy to him either. And so I think it’s so important to go on that journey of figuring out how to be you and do what you love and do what you’re made for at the same time as love and serve and care for your loved one.

Charlotte Bayala: 

Exactly. I mean, I have had, I, I try not to always talk about a caregiver’s identity because I would love to talk about that all the time in all my episodes and all the things I put out there, because quite frankly, if you don’t understand that your life has changed. And you don’t fully understand that you are now a caregiver and that is a new role. In the same way you would understand having a new job is a different part of your life, then there’s no way for you to find that path through all the difficult parts of caregiving and still have a part of you. But that part of you is just a small part of that pre caregiver person. You have to figure out who this new person is. When you’re giving up things, if you have to give up your job or you give up things that you did for fun because you can’t, in the beginning, figure out how to make it all work, and you come back around to understanding who you are, like in a way date yourself or. Take it as trying to figure out who this new friend is because you change your interests might have changed, your ability to do things may have changed, but there are still things that you loved doing that you should do everything you can to bring it back. But until you become aware that you’re a caregiver and you’re able to grieve the parts of your life that you had to give up. It’s a hundred percent more difficult to go forward without being bitter and angry because you’re always using how life used to be as the marker for what happiness is, and that that has to change. Your goals, change what happiness means, changes, and until you understand that you’re always gonna try to be that person you were before and it just isn’t possible.

Rayna Neises: 

As you said that I also thought about just becoming a parent. I mean, that changes you too. It’s a new identity, but it, if you allow it to become your only identity, then you end up lost and totally abandoning who you are and what you were made for

Charlotte Bayala: 

Yeah.

Rayna Neises: 

being a parent. So I think all roles can do that to us if we allow it. So it’s a part of living and growing and it’s part of what we learn. And being a person and being a human is learning how to have those boundaries, how to hold on to those things that we love. At the same time move into and embrace the new season of life.

Charlotte Bayala: 

Yes.

Rayna Neises: 

So why do you think self-care is different for caregivers compared to that self-care before you have that identity?

Charlotte Bayala: 

I think self care is different for caregivers because unlike parenthood where society kind of celebrates it in a way. No one really understands when you become a caregiver that, first of all, that your life has changed. So even from outside, you don’t have the support that you would have if, let’s say you got a new job or you had a child. You know, all of these other things that cause changes in the role that you play in your world are usually celebrated or talked about or seen as you moving forward in life, whereas caregiving, you know, I don’t think we have had enough good marketing for caregivers for people to understand how important that role is and how challenging it is. And so whereas let’s say you were an oncologist or a neurologist and you have a job that’s demanding it’s socially acceptable for you to take a month long vacation. Everyone would say, All right, well, they have an important job. They work hard. They’ve spent years learning. They should be able to take off all this time. Or for a parent to ask someone to come into their house to watch their child, whether it’s a babysitter or a family member, they would do it without any judgment. But then as caregivers, we aren’t given the message that it’s okay for us to do these things that are completely socially acceptable for other people to do. And so self-care is kind of this big looming thing that I think if we don’t understand what self care is, we think it’s a vacation or expensive massages or hour long yoga classes. All of those are awesome to do, but that isn’t the kind of self care caregivers need to be able to continue long term in their caregiving. They need something they can do every day. And if you have a world full of people not understanding that you need to take these breaks, or if you feel that you’re going to be judged, then already self care is sabotaged before you even figure out what it is that you wanna do. So what I try to do is just kind of hone in on the point that you have to grab the reins of your care. No one else is gonna make time for it for you. You have to really advocate for yourself, and you have to learn how to make yourself a priority, which is most likely gonna be difficult. But I can tell you that when you do that, you will realize that all of that work in the beginning was well worth it because there is nothing better. Then being able to just sit next to your parent or your spouse or your child and just be able to enjoy time with them. And if you’re a caregiver a hundred percent of the time and you don’t let yourself be that person without caregiving, then that never happens. And so you spend your whole time being a caregiver, working to keep a person alive and not actually live with them and enjoy them. And that’s, that’s really sad..

Rayna Neises: 

And that leads to the regret that I always talk about in that you’re finding yourself at the end of the road looking back going, Why didn’t I do this differently? Why didn’t I cherish that moment? Why didn’t I notice? Why didn’t I, All of those questions that lead to such a Hard place to recover from. So I believe learning, as you said, learning caregiving in an everyday routine in your rhythm of life brings you to a place of being able to enjoy that, to love your caregiving life, and to really be able to embrace the moment and be present. When you’re always frantically running from one thing to the other and wearing yourself completely out there is no option of enjoying the. It just isn’t possible. I think that milestone is kind of what you’re talking about. That milestone of taking on that label or that identity within caregiving is something that we are trying so hard to, to put it out there and to get people more aware of, I don’t know if you’ve heard of Jen Chan, but I had her on quite a few episodes ago, and she talks about throwing yourself a party when you

Charlotte Bayala: 

Mm.

Rayna Neises: 

a caregiver. And actually, you know, she’s like, We have baby showers, we have wedding showers. These big moments in life when things change, we celebrate and we ask our family and our friends, How can I do this? Well? What can I learn from you? And, and I love that concept because I do feel like if we were more willing to be, first of all ourselves, to realize to not just slide into this role like many people do when it’s not a sudden diagnosis, I think oftentimes we just find ourselves sliding into doing more and more and more. But rather realizing in this moment, this is a new label, this is a new job that I’m taking on, and celebrate it with me and know that my life is changing and know that that means that things will look different, but it doesn’t mean that I’m leaving you behind or that I don’t need you and I don’t need these relationships and this support that comes with it. So, so important. I, I really appreciate you bringing that back out because it is something we just don’t think about on our everyday basis.

Charlotte Bayala: 

Mm-hmm.

Rayna Neises: 

And we can do that in our own way by just asking people to come on the journey with us, you know? And just to be able to say to those friends. I am busy, but hey, you’re important. This is important to me. Let’s get it on the calendar.

Charlotte Bayala: 

Definitely

Rayna Neises: 

let’s plan to be together and spend time and have those fun events and life still, because life’s still going so well. What’s one piece of advice that you’d give a caregiver who wants to care for themselves better?

Charlotte Bayala: 

I think I would make sure that they know that they do deserve to enjoy their lives. I think oftentimes caregivers wait to care for themselves. It’s like a carrot at the end of the stick that’s never ending. When they feel better. I’ll do this, or, next week might be easier or, you know, we, we keep putting ourselves off for a better time. That is never going to come because once that moment comes where things are better, we are gonna fill it with something else. So I think it’s important to know, don’t wait for that perfect time. The perfect time is right now. And don’t feel like you have to deserve to do something for yourself because you did something good. Everything you do is good. It needs to be a requirement, not a gift, not kind of a prize at the end of the day for you to do something for yourself. And just know that when it becomes difficult, if you try something and it doesn’t work, It’s not a failure on your part, it’s just like trying on clothes. You try on multiple pairs of genes until you find the right one. And you don’t like try on the first pair of jeans and then walk out with it feeling horrible and it like digging into your body. You’re like, No, this doesn’t feel right. I want something that makes me happy. Right? Something that feels good, that makes me feel good. And that’s what self care should feel like. And there’s no requirement for time or the amount of effort. It could be simply you just sitting on the stairs and breathing for five minutes. So don’t complicate it, but just know that it is part of the requirement of being a caregiver. It’s not a an added thing that you try to do whenever you know you happen to have the time. It should be done all the time.

Rayna Neises: 

It’s not an event.

Charlotte Bayala: 

No.

Rayna Neises: 

something that you just do here or there. It’s an all the time thing. So important. And I think one of the things that comes to mind for me is I don’t know that I was ever good at self-care before I was in a caregiving season.

Charlotte Bayala: 

Mm-hmm.

Rayna Neises: 

So oftentimes I think our caregiving season just magnifies. What we’ve already been experiencing, and that was living a very busy life, doing a lot of different things. Sometimes taking care of ourselves, sometimes not, but typically just being overextended and then you add to that already heaping plate. I often imagine looking at that food, you know, and you’re already have this big plate full of, of things that you enjoy and love and have to eat and all of those things that are on that plate. And then you take and smash this big responsibility of caregiving on top of it, and you have this gross mess that certainly isn’t appetizing or something that you wanna participate in. We can’t just add this responsibility on top of everything else, especially when we weren’t doing a good job of taking care of ourselves to start off with.

Charlotte Bayala: 

Exactly. Yeah. Yeah. And I think that the difficulty is then you’re told as a caregiver, I mean, the message is very clear that you need to care for yourself. Or you might, you know, see your sister after being a caregiver for six months and they look at you and say, have you been caring for yourself? And you know, the message is never, I feel. In your best interest, And so if someone sees you and is like, Oh man, have you been caring for yourself? I know clearly I look like crap. And they’re like, you make me feel uncomfortable because you clearly aren’t able to handle what is happening. So I’m going to say these words to make sure that you understand. We all know we need to do something. The problem is, when we become a caregiver, we’re handed lists left and right. Here are the things that you should do. Do yoga, meditate, journal, go for a walk but nobody, nobody tells you how to do these things. You know? Nobody, takes time. Like a friend doesn’t say maybe, Hey, you need to care for yourself. So what I’m gonna do is tomorrow I’m gonna kidnap you from your house and we’re gonna go to Starbucks and we’re gonna sit in the car and cry. Right? Everyone needs to do better in helping caregivers figure out how to care for themselves because quite frankly, if you can’t continue to care for the person that you care for, someone else in your family is gonna have to do it, or they’re gonna have to hire someone to come in to help. And I think that the better option is for people to put those resources and time into helping you, figuring out what you need.. Instead of waiting until you break down and need to find help from somewhere else.

Rayna Neises: 

I love how you even said that because they’re going to have to put money towards bringing someone else in. Even that is like this big have to do when actually it needs to just be part of it. There is no way for one person to provide the care that’s needed for people who need care. We need to come around and offer support in every way, and we need to be willing to have the resources to bring the support in so you can have the time for the self care. We need to have the resources to allow you to get the support that you need, whether it be coaching or counseling or classes, whatever it is that you need for your self care. You have to put the resources towards those things. Or like you said, they will get. They’ll get drug out of you. The resources will eventually get spent one way or another, and you can either end up having to take care of the caregiver once the person’s gone because they’re now not healthy and can’t handle things on their own either. Or you can do it in a healthy way and keep everybody as healthy and happy as long as possible.

Charlotte Bayala: 

Definitely caregivers need a team of their own. I think that most of us feel like that’s not even, that’s not even a thing because the person you care for has a team of doctors and nurses and, and people that come in to help in the house or help with food or nutritionist. And, the list I’m sure is long for every specific person that we care for, but who’s on your team? And so I think it’s hard because if you don’t feel like you, you again deserve to have other people help you. Or if you feel like if you ask someone to do something on a regular basis that you can already do. Right? Because we always want to just do everything that we can on our own. But if you, if you bring someone in, then there’s these issues of, well, does this communicate that I can’t do this, that somehow I’m deficient in my ability to care for the person? Or will I be judged because I’m bringing someone into my house to do something to help me? I. But you know what I mean? Don’t we all have something that in the past we’ve had people come help us with? Whether it’s mowing the lawn or cleaning snow off the driveway, or having someone come spray our house for bugs. I don’t know. I mean, we all have like some kind of service that we may have used in the past without even thinking about it, because that was something that we weren’t skilled in doing. Well, there could be someone out there better skilled to cook dinners or to do the grocery shopping for you. Like there are so many things that we can even ask people to volunteer for and not have to have money be an issue or a boundary. And we don’t do it because then we think, well, then people are gonna think, I can’t do it all. You can’t do it all..

Rayna Neises: 

That’s right

Charlotte Bayala: 

You shouldn’t be doing it all. You should not feel like you do or you have to and you should be. And if you can understand that and acknowledge that, then it’s easier for you to ask for help so that you can get that time to try to figure out what, who you are. What do you wanna really do for fun right now? What can really get you to stop and breathe and just enjoy a moment at a time.

Rayna Neises: 

So much wisdom. We could talk forever. So thank you so much for being here and just for sharing your journey in that honest, real vulnerable place of saying that a lot of this has to do with our head and how we think about it, and the shame that we have a tendency to put on ourselves or we allow others to judge us or to feel judged for being human and having needs, and that’s what it boils down to. We have needs that we are neglecting when we don’t implement self care. And in order to not do that, then that means we’ve just gotta do what we need on top of caring. And that’s okay.

Charlotte Bayala: 

Exactly. Yep.

Rayna Neises: 

Thanks Charlotte, for being here today. Remind my audience how they can be in touch with you and find additional resources from.

Charlotte Bayala: 

Yeah, you can find me at LoveYourCaregivingLife.com. All my socials are Also Love your caregiving life.com, so as you type it out, start to believe it, and I hope to see you over there soon.

Rayna Neises: 

I love that. Thank you so much. Thanks for listening. This episode of a Season of Caring podcast has been brought to you by the Encouragement Series starting November 8th through An opportunity to learn from some amazing women how to implement self care in a different way. We hear so much about self care and. Charlotte did an amazing job talking about how self care has to be an individual ongoing process, and I found these women to have some different takes on self-care, some ways that maybe you haven’t thought of before. It’s a free series available in bite size pieces, less than 15 minutes a day to just let you stop and think about how are you caring for you. So join us. Sign up today@encouragementseries.com and I look forward to seeing A Season of Caring Podcast has been created for the encouragement of family caregivers. If you have financial, legal, or medical questions, be sure to consult your local professionals and take heart in your season of caring

Angie Rischpater

Angie Rischpater

Occupational Therapist and Caregiver Advocate

Angela is an occupational therapist with over 20 years of clinical practice that she has crafted into messaging created for the family caregiver with the objective of teaching both a preventative and restorative approach to care so that the caregiver experiences more liberty to live a life beyond “caregiving”.

She continues to work in acute care at a local hospital while offering private and group caregiver coaching to meet the needs underserved by the healthcare system. She is also a contributing writer and webinar host for Caregiving.com. Her mission is to ensure that caregivers have the power to design their experience using a therapeutic perspective.

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Meet Your Host

Rayna Neises

Rayna Neises, ACC

Author of No Regrets: Hope for Your Caregiving Season, ICF Certified Coach, Speaker, Podcast Host, & Positive Approach to Care® Independent Trainer offering 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

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