Hope for living, loving and caring with no regrets!

Caregiver Stories and Learning from Others

Episode 25

Rayna Neises, ACC, host, and Aly Neises, RN, cohost, reflect on the conversation with Kinsey Oglesby who experienced an unexpected healing during her caregiving journey.  Additional insights discussed are:

  • Even when there is a strained, difficult, or even non-existent relationship, the caregiver can still survive by shifting their heart.
  • Personal care situations are difficult for everyone and caregivers who show respect and explain what they are doing and how they are doing it will have an easier time.  It truly is not at all about the caregiver; it is all about the loved one and helping them because they cannot help themselves.
  • A difficult relationship will not get better because the caregiver changes the person being cared for, but instead because the caregiver changes their perspective.
  • Think about trying things that seem impossible because they might not be.  However, if the situation proves to be too difficult or toxic, think outside the box and find other solutions and ways to help. Being the day to day caregiver is not for everyone and that is okay!
  • Extend grace to all involved . . . Including yourself.
  • Ensure the approach to caregiving is not just from duty, but from the perspective of the heart.

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 cohost. And today we’re just going to take a look at the conversation I had with Kinsey Oglesby. Kinsey and I have been friends for years and she is an amazing woman, but when I hear her story of how she was able to care for her mom, after having such a difficult, difficult childhood, the cruelty and unkindness, I don’t even know. That’s not even a big enough word to describe, the types of things that Kinsey entered as she was growing up and then defined herself in a place where she had to care for her mom. It’s just an amazing story that I was really glad she was able to share with our listeners.

Aly Neises: 

I love that she was willing to kind of show a little bit of her heart and tell her story and give hope to others. I think a lot of times on this podcast in society, we talk about the positive things, the positive relationships, the positive loving things that caregivers do and how this was a little different, that relationship as a whole, from the beginning, it was difficult. And then to be at this point where her mom needed to be cared for and needed that extra support and that she did it would be very, very hard. I cannot imagine that. For her or for her soul and her heart, that would be a difficult pill to swallow.

Rayna Neises: 

I know Kinsey has sisters and they helped as well, but they had the same childhood she had. And so, I guess the thing that I am noticing is the fact that she’s not the only one. I know my story was very different than her story, but her story is not unique. A lot of our listeners probably find themselves in that same place. I know you as a professional have seen caregivers that have very difficult relationships with the person that they’re caring for and it is just a part of life because relationships aren’t easy. I so respect people who can step into that and do that because of the wounding that happens, you’re already wounded from the relationship not being good, but then as you continue to care, the wounds can get larger because of the way that they behave, as they progress through their disease. Lewi Bodies, dementia is very difficult, very difficult dementia. The paranoia, it, it just is hard. It’s a hard, hard disease anyway but to have this relationship that was so strained, would be hard to imagine, honestly,

Aly Neises: 

No. I agree. As you mentioned, Lewi Bodies is a very difficult dementia to deal with. There is a lot of paranoia. There’s also a lot of times, a lot of aggression and agitation, physical combativeness is very common. Mood swings and it’s just very difficult. So I can’t imagine of already having all of these wounds from childhood, the things that have occurred. Kinsey had mentioned that she had kind of moved past some of that, but it was still there. You forgive, but you don’t forget. And so it would be very difficult to be in a situation where you have this person you’re going to take care of day in and day out. Before you could kind of leave and separate yourself from the situation when it was negative or necessary. And now you can’t really do that. So that’s a whole new aspect and I really respect her and her sisters for showing their heart and showing their compassion and doing it so that they could walk their mom all the way home.

Rayna Neises: 

Five-year journey is I imagine would belong five years is a long time no matter what you’re doing. Much less to be in this type of situation. And so it took, Kinsey, being able to have a shift in our hearts, to be able to do that. And it was such a beautiful story to hear how she made that shift.

Aly Neises: 

I think without that shift, they never would have made it. I shouldn’t say that they never would’ve made it, but the journey would have been much, much more difficult. That mindset change for her put a whole new perspective that she was able to do some of the things that would have been a lot more difficult before. One of the things that really stuck out to me that I never even considered was, just the day in and day out duties you have to do as a caregiver. Especially when you’re talking about somebody that can’t do things for themselves, intimacy and things like that are a whole new dynamic. When we’re talking about family caregiving, In a normal relationship, you know, we probably didn’t see our parents without clothes on or help them to the restroom or gave them a bath and Kinsey and mentioned, she can not recall any time that her mother had even touched her, let alone hugged her or was affectionate, something as simple as like, holding a hand or giving a hug or a pat on the back. Something that in my family is very natural. We do it without even thinking. Kinsey mentioned that the aspect of taking her mom to the restroom or giving her a bath actually made her feel physically ill that it was allot, I just gave her a lot of anxiety and angst about how she was going to approach it. And so she mentioned about just taking little baby steps and after she did it the first time, the next time was so much easier, but I didn’t even consider the. That big hurdle that you would have to overcome. I know that it’s a hurdle that a lot of family caregivers have to overcome like I said, it’s not normal to have to see our parents or touch her parents in intimate places or things like that to help physically take care of them. So one tip, I always tell my caregivers that I work with is that just have some dignity and have some respect and tell them what you’re doing and how you’re doing it and treat them as if you would want to be treated. I know that’s a common thing we tell everyone, but it’s very true, especially when we’re talking about caregiving and something that we often forget when we’re talking about physical attributes, especially with patients that have dementia, you know, their cognition and their reasoning, isn’t always there. And so somebody touching them in their private area can also cause them angst and anxiety. So we’re going to talk about it, probably over talk about it before we do it, just so we can try to precursor some of that. It’s not always going to work based on processing and where we’re at the disease, but it’s what I would want. It’s what I would want for my parents is what I would want from my grandparents. So I think it’s just a good thing to kind of remember those kinds of things and to take those baby steps in those kinds of tasks.

Rayna Neises: 

You know, it’s funny. I was so young when my mom was diagnosed that, we didn’t have any adult relationship early into her disease, she wasn’t able to talk. As she grew in her physical need to shower and to wipe her when she went to the bathroom and things like that. That was just what I did. She just needed help. She couldn’t do it herself. And I just did that. We never really had a different relationship, so it didn’t feel as awkward, but that was one of the things that I talked to my sister about whenever we were talking about caring for my dad at home was I said, I’m not bathing him. I don’t want to see my dad naked. I don’t, I don’t think I can do that. And it was funny cause she even mentioned that not too long ago about you weren’t ever gonna that’s like, I don’t think you can say those things because you really don’t know for sure, dad was very modest. and so helping him to keep his modesty as much as possible when we were bathing, he still showered. He still used his washcloth and did things like that. And you can remind him of those things, but times where he had an accident and especially, a bowel movement that we had to clean that up, that was so hard because he didn’t want help, but he also didn’t know how much of a mess it was. And so I learned that at that point, Hey, let’s jump in the shower because it’s more likely to get it all clean than it is for me to be trying to clean him with him not understanding why I was doing that, but it was such a different experience with my dad because my dad and I were adults and we did have a great relationship. I dreaded it. But I also found, when he’s sitting there in his own poop, I’m not leaving him there. And so I was able to just move in and help because he couldn’t help himself. So it really didn’t help shift that perspective for me to, yes, this is my dad, but it’s not about his parts. It’s about my dad. Not being able to do it for himself. But I did love how she shared what a shift it was for her when she was able to just pray about it and really have a strong word from the Lord of saying this isn’t about you, Kinsey. This is about my daughter, my Bobbi, who I love. And I adore she’s my princess and making that shift of understanding the value of someone to God. And that you just get to be his hands and feet. It’s just beautiful to see how that just opened up a whole different relationship with her mom.

Aly Neises: 

I agree completely. I believe when we can kind of step back from the situation and value a person for a person and not a duty, not a task, not just another thing to do. You’re going to have a much more meaningful relation if we can think of people as people and change that mind shift, but it’s not a task. It’s not. just another job you think you’re going to have more meaning in your day to day relationship within yourself? Cause sometimes when we’re talking about difficult relationships and difficult caregiving situations prior to this very intimate time, we’re not gonna always be able to fix the relationship between myself and my mom or myself and my dad, if we had a bad relationship before it’s not necessarily right to think, okay, so now they’re sick and now everything’s just going to be magically better. It’s not reality. So if we can shift that and just to kind of be okay with what’s internally kind of that personal peace and be okay with that and do that what’s right by our hearts. I think we can get more rest at night and feel more fulfilled in that caregiving journey as well.

Rayna Neises: 

I think it’s important to also consider where the boundary is of healthy caregiving. If the relationship is still abusive, if the relationship is still one that you cannot handle emotionally, then you aren’t the one to do the caregiving. And there’s different ways to caregive. There’s ways of supporting through doing finances, through helping with scheduling, through taking the doctors and being that communicator. There are so many hats that you have to wear as a caregiver, being the person who is hands-on is not one that you have to be. You might push back listeners when you hear me say that and say, but nobody else will do it, but you don’t know that until you ask or until you look for resources that are available to bring someone in to do that. There are people that can help with that. And if the relationship is not healthy for you, then it’s important to realize that it’s not going to change. You’re not going to change the person that you’re caring for. So unless you can find peace like Kinsey did through a different perspective than it might mean that somebody needs to step in and do this and not you.

Aly Neises: 

I too will say it’s completely okay to say no, it’s completely okay to say I can’t handle this. I can’t do this. That is fine. One thing I wish we could do and one thing I learned a long time ago is that we don’t know everyone’s situation. You know, Kinsey mentioned about the caregivers at the end of life and how the one caregiver was just very distraught when her mom passed away. And she had a different relationship with her mom, then Kinsey did. You know, Kinsey had all these wounds and baggage from her childhood that she definitely I’m sure worked through to the best of her ability, but they’re still there. They’re never going to go away. Those wounds have now become scars that you will always have. And so that’s okay to understand that their relationship is going to be different. And it’s okay to also find some peace in knowing that they might have an opinion about how you should act or how you should interpret a situation or how you should handle it. And we both are here to tell you, I guess I shouldn’t speak for Rayna, but I’m here to tell you that. No one knows your situation, but you, and in order to be a healthy caregiver, you need to do what’s best for you and you alone, because when it’s best for you, it’s best for your loved one. And that’s all we want is for what’s best for them as well. But most importantly, what’s best for you. And as you mentioned, Rayna, you know, if it’s a toxic relationship or if it’s physically or emotionally abusive in some sort of way, it’s okay not to be that person that’s in there day in and day out. In fact, we would prefer it’s not so that after you have walked your family member all the way home, That you don’t have these new wounds and these new scars that you have to deal with because that’s even harder. It’s going to be more complicated than too.

Rayna Neises: 

Caregiving for someone that you love is challenging caregiving for someone that you love and don’t get along with is really, really difficult. It’s so important to take a look at what you’re doing and how you’re doing it. And we’ve mentioned that earlier, as far as task versus heart. It was amazing to me to see those that loved my dad and did the jobs well. And that’s what it reminded me of when I heard Kinsey talking about the caregiver that was so deeply affected by her mom’s passing was how well that woman loved her mom and Kinsey loved her mom and was able to serve her mom well by being the hands and feet of Jesus, as he asked her to be. But there are people out there who can do it for your loved one if you can’t. And that’s important to consider because many times we feel like no, I’m the right person. And I just want to encourage you, listeners, to really think about who is the right person and you, there’s a lot of things you can do to care for your loved one that, wouldn’t necessarily take. Bathing or those types of things. There was a whole period of time that, just fixing lunch for dad and hanging out with him was part of the job. So you can have those parts of the job that you’re still able to be a part of their life without being the one who has to do all of those tasks. It helps just to think outside the box. Sometimes we define our job as caregiver, as one specific thing, when it really can be a lot of different things in our loved one needs a lot of things. And so being able to. Do what you’re good at and do what you’re comfortable with and putting yourself in a place where you can see if you really can do what you think you can’t, because just like Kinsey, it was difficult. She thought she can never do it. I didn’t think I could ever do it, but we were able to step into it and it had what we needed to meet those needs. So don’t count it out before you try it. But at the same time, I think if the relationship is toxic, it’s not something you need to continue.

Aly Neises: 

Knowing your strengths and your weaknesses and knowing your boundaries are what is going to really save you during those times. And I feel really strongly that like you said, sometimes you have to try some things before you understand that well, that wasn’t really a boundary, you know, we’ve talked before about soft boundaries and hard boundaries. And so figuring out what’s a soft boundary for you and a hard boundary for you. Before you get in these relationships, when we’re talking about walking somebody all the way home is going to be beneficial for you, especially when we’re talking about a toxic relationship. Something that’s been very difficult before, like I’ve said, those last years and moments, usually in my experience are just as difficult. You can’t expect somebody to suddenly change because they have a certain diagnosis or because they have a different perspective on how the end of their lives will be. Sometimes the perspective is we put ourselves in their shoes and the way that we would handle the situation is the way we want them to handle this

Rayna Neises: 

Hmm.

Aly Neises: 

And that’s not always the case. And so extending each other, grace, not only to the person you’re taking care of, but also to the other people on your team that are helping and take care of, Kinsey had sisters, they also had a difficult relationship with her mom. I’m sure. I’m sure it was not just Kinsey. And so, extending them grace and letting them kind of find where they needed to be and their situation and where they were comfortable in that caregiving role as well is something that you’re going to all. Because in the end, you want a relationship with those people after this is over. So sometimes that’s hard too, especially when we’re in a stressful situation, like caregiving for a loved one.

Rayna Neises: 

We always want people to think just like us and they never do. So being able to negotiate those relationships all the way around, I think is part of what is so challenging in caregiving. Not only do you have the person you’re caring for who has a strong opinion and things done their way, but you have five or six other people who were trying to team with you and they all want things their way too. It was funny that, after probably a year and a half of my dad being gone, my sister and I were talking about how we had teamed together. And I said, what do you think this reason for our success was? And she said, Oh, I think I just let you do stuff you thought was important. Even when I didn’t get it, I laugh because I thought. I didn’t know. You thought that I thought the same thing, you know, there were things that were important to her that I was like, why is that such a big deal? But obviously there were things that were important to me that she didn’t get either and allowing each other to have what we needed, to do, what needed to be done, let us get along. like you said, treasuring and valuing that relationship not only with family members but caregivers. In order for them to hang in there with you, that respect has to be there with them too. And it’s challenging to negotiate all relationships in life. And these are just relationships. So finding the way to have the grace that you need to keep those relationships. The communication is so important to keep the relationships going throughout the season and beyond. As we consider the biggest takeaway from our conversation with Kinsey, that perspective of duty versus heart, it stood out to me when she said it, that every person who’s caring and cares what the heart it’s obvious. Considering the difficult relationship they had I don’t know that would have been possible to just stay in the duty and do all the things for five years that needed to be done. So thankful that she was able to find a way to engage the heart. So caregivers today, I just want to challenge you to really think about where’s your hearts and what’s the heart in what you’re doing as you’re caring for your loved one. Burnout is obvious when you find you’re only doing things in duty and not in heart. So consider if you’ve lost your heart for caregiving with your loved one, that possibly it’s just burnout and really evaluating what you need to get the respite, the refreshment, the recharge that you need to get your heart back in the ballgame and make it a priority to figure out how to do that because your loved one needs your heart. They need your heart more than anything else. Thank you again for listening today. Remember a season of caring podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, 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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