Hope for living, loving and caring with no regrets!
- Provide care with dignity.
- More about Karen’s book Reaching Up for Comfort
- Nurturing your soul is a must- What does that look like for you?
- Staying in your lane as a caregiver.
- Establish the main goal to filter everything through- My filter was happy and healthy as long as possible.
- Pick your battles.
- Changing the environment to avoid triggers.
- Accepting change, grieve it, and then learn to move toward a new normal.
- A Challenge to care for you and them all the way home.
*Transcript is an actual recount of the live conversation
Aly Neises: Good. So Karen’s interview was amazing. When I look at all the things that she’s been through and what a great attitude she has with the daily demands on her as a caregiver, it’s pretty awesome.
I listened to your interview with Karen and all I kept thinking was, I don’t know that I could do it. Going from having your husband have this sudden stroke and now taking care of her dad. I think that taking care of her husband prepared her more so she could take care of her mom and now her dad.
But I cannot imagine being in the midst of that, you think you’re doing this journey together with your husband to raise your children, and that’s your main focus, and now you have to pivot and focus on taking care of him. And I just, I could not imagine doing that.
Rayna Neises: It is amazing when you think about that. And one of the things that really stood out to me as well as not only pivoting to care for him, but doing it in such a way that you’re still honoring him as her husband and as a dad and as a man, you know, just all of those things. To keep his self-esteem intact because to go from an able bodied individual who’s providing for his family and I’m in her book, she talks a lot about his personality and what, what a fun loving guy he, he is. but to keep that after suffering a stroke at such a young age and dealing with that disability from that point on in his life, just the teamwork that has to be there. Not to mention, you know, the wisdom for her to know how to do that.
Aly Neises: Yeah, I, I loved how she even talked about when he actually was having the stroke. She thought me was just kidding cause he was so ornery and so when she realized it was a serious thing, you know, your world just comes crashing down around you and you have to pick up the pieces to keep moving forward. But like I said before, I just, that had to be extremely difficult. So I admire the tenacity and the strength and the courage that she has shown throughout her life. And now that she’s spreading this other education, not only through coaching, but her book. That’s amazing to me.
Rayna Neises: Our listeners are coming from all different places as caregivers, and there definitely is such a difference in the different relationships with the people that we’re caring for, coming from it as a wife at such a young age would be a completely different experience then I went through, in supporting my parents. I just love her heart for caregivers because she has walked it for such a long time, 25 years. And she knows how difficult it is, but she continues to just give back. And I just think that’s so amazing how her heart is really to give back and to support others through their, whatever season they’re in their life.
And her book is, it’s great because in her book she shares just how her story, just how they met and what their relationship was like and how all of those things impacted her. Also helps her to reflect on caregiving itself because each chapter she lays out, you know exactly how she is been able to reach up for comfort. And that’s what she talks about, through each season, she can learn from it and continue to grow as a person and grow in her faith. And just keep reaching up, I think that’s what we see in her, an amazing, strong, wise woman who’s out there just giving and supporting and loving and all of those things.
Aly Neises: No, I agree completely. I also liked the way that her book is even organized. It’s shorter chapters, so you can read them when you have just a short amount of time, because we know as caregivers, sometimes you don’t have a lot of time to dedicate, but there’s also reflection questions and things for you to self-reflect and pray and contemplate so that you can grow. I love that is also an integrated into the book.
] Rayna Neises: Yeah. Giving you that opportunity to take what you’ve read and learned about her and how her attitude came into play within that specific chapter. Then those reflective questions really were simple but great to just make you stop and think and then being able to, you know, just pray and ask for the peace that you need because it’s not easy to find in the middle of a caring season. I love that too.
Aly Neises: I love throughout her interview with you, she talks about how the things we have talked about many, many times before, you know, nurturing your soul, how you have to take care of yourself so that you can take care of others. And she really emphasized that aspect. You need to find what’s important to you to nurture the soul of you so that you are able to pour from a fuller cup. As we all know, it’s impossible to pour from an empty cup. So when we’re giving and giving and giving, there’s nothing left to pour so you gotta fill that cup yourself. Cause sometimes in these caregiving situations, you don’t have the other person to fill it for you. Especially when we’re talking about dementia and Alzheimer’s.
In those kinds of situations when we’re taking care of those people, when they’re more advanced you’re not having conversations every day, especially meaningful conversations. So I know that you can really relate to that the further you are on your journey with your mother, but as your dad as well.
Rayna Neises: It’s so true. When you said that you can’t feel from an empty cup, we all know, immediately I started thinking what did I fill my cup with? And some of what I did fill my cup with, even in caring for dad when he couldn’t necessarily talk to me as much, was just those moments , those glimmers of little pieces of him definitely filled up quickly just whenever we got that funny smile or that ornery comment or. You know, just whatever it was in the moment that, let us be. who we are to each other. but then, you know, just thinking about other things was just reaching out to a friend and having a normal conversation. that kind of filled my cup and the regular lunches with my aunts.
[00:06:35] Being able to take my dad’s to get our hamburgers and go over and visit his sister for a while and just be able to stay in touch with her and have a normal conversation with her after three days of not a lot of normal conversation was a way of filling my cup. Music is a huge thing for me. I love to listen to music, upbeat music that just encourages my heart and for me to prayer and journaling is a big piece of that as well. So really taking time to stop and think about what is it that fills my cup. They aren’t things that are big investments of time because you don’t have it. You have to find those little things that can fill you, so that you can get it in those little short moments that you have.
Aly Neises: I agree we’ve talked about before, not the big, big investments, not the big time constraints, but just little bits throughout the day to get you going to keep you going. That you can keep doing this cause we don’t know how long this journey is gonna last. And the goal is to walk them all the way to the end to home.
So we have to take it day by day and moment by moment. And I think the biggest thing that getting you through some of those days is that we kind of understand that we’re not completely in control. And sometimes as caregivers, and as just people sometimes that’s the hardest part is that we’re not in control, especially when we’re talking about dementia patients and Alzheimer’s patients.
So you have to kind of pick your battles and figure out what is important and what’s important today may not be important tomorrow. What is vitally important today, and I know you can definitely relate. So what are some of your tips for our caregivers on trying to figure out what is important to them and what kinds of things they need to fight for in their caregiving?
Rayna Neises: It’s funny because I was a teacher and so I frequently. Tease that I became a teacher so I could boss somebody around because I’m the youngest in my family and my sister was very bossy. And so, I always told her that, you know, you boss me around when I was little, so I had to be a teacher, so I have somebody to boss around. Right? Being in control and wanting to have things in a certain way, it’s very much my nature and was very much something that I had to let go of and learn to a relax. I think that the older we get, the more we realize all of life is that way. But the season of caring for my dad was a big piece of that.
So I frequently had a little thing that went through my head. My goal was to keep my dad as healthy and happy as possible, as healthy, and happy as possible. And so each thing went through that filter, does this equal something that keeps him healthy? Does this equal something that keeps him happy?
And. I couldn’t have one and not the other. I needed them to be both. So if I was only worried about healthy, I would have totally restricted all of his diet. The doctor recommended we take all gluten away, all dairy away, and. I just felt like that was kind of cruel, to be honest with you.
No, I wouldn’t want you to take all of my gluten and all of my dairy away. I mean, my dad loved his ice cream and he loved having cookies and pie and cake and all of that stuff. And so it was just like, Oh, as soon as I heard that and I thought, Oh my gosh, okay, so we have to keep him healthy and that’s going to help because we had reflex and other things that were just really flaring from the those things.
And so I started looking at what are our options? What can we do? We found Rice Dream, which was a substitute, a rice milk ice cream, and with some chocolate on it. And then I made him homemade cookies and they were not gluten free, but he had just a small cookie every night with his ice cream it was kind of that in between. It kept him really happy and overall helps with his health. So. You know, my filter was happy and healthy, so it was really keeping that in the forefront for him. What was most important to him now as a caregiver, because I was one of 12. Even going into his home, I grew up in this house. This was my room, but there were other people sleeping in this bed.
There were other people in this room when I wasn’t there. And so it wasn’t my space. And so figuring out how to make it as much home as possible when I was there, and then how to tuck everything away and leave it all, as it needed to be for someone else to come into that. Space was really important because I needed to nest. I was there for three days and I needed it to feel as homey as I could, but at the same time, I needed to respect everybody else. And so. I think for me, I also had to realize, what do I need? I need to have my music. I need to have my books. I need to have those things that nurture me as well in order for me to make it through the season.
I think happy and healthy for dad was important, but I also had to consider that for myself. One could not completely overwhelm the other. As far as his happiness and healthiness, completely taking over my happy and healthy. And so, that balance is you know, to integrate both of those things. But the things that I fought for were the things that I knew would impact his health the most or his happiness. So when it came down to having someone around him that wasn’t listening or wasn’t with his needs, you know, they weren’t there. I got rid of them because that impacted both his happy and healthy. That was kind of the filter that I used, you know, really realizing I can’t be completely in control, but I need to make sure that I’m doing as much as I can to give him those things.
Aly Neises: I think those are some great tips and some great things to think about. You know, we frequently talk about that you need to focus on yourself and that kind of thing. But we also talk about how you need to focus on who you’re actually taking care of so they are our main focus always. Like you said, think about What’s going to make them happy? What’s gonna make them healthy? What’s the best for them? Then I think it’s easier to let go of some of those things that we feel like are important. I know helping taking care of patients like I do and being in healthcare as long as I have you learn that sometimes a dirty shirt isn’t the end of the world, you know? I know as it would bother me, it’s something that frequently is on my mind. I don’t want people to feel dirty, but I’m not necessarily going to force them to change clothes because it makes me feel better. It’s just one of those things that you have to figure out what’s important for the patient or the person you’re taking care of what would make them happy, if that, if it’s not a big deal, it’s not a big deal to me and I just have to let that mantra kind of go through my head a lot and I’m not doing caregiving 24 seven so.
Rayna Neises: I agree. The little things like that, he spilled something on his shirt, you know, that kind of thing would have bothered my dad at one point in his life, but it didn’t bother him at that point. So it really wasn’t that big of a deal at the end of the day. But I think one of the things that I did see is that, you know, then how can I. Not fight him over it now, but how can I prevent him from putting those same clothes on tomorrow? Thinking ahead and problem solving. You know, what is it that the trigger that’s gonna cause a problem that I’m going to have to fight versus what can I do to control the environment in a way that just gives us less of a chance to have that issue?
One of the things that comes to mind was, you know, Alzheimer’s is just typical for people to put things away, to hide things. I don’t think they’re really hiding them on purpose necessarily, but I do think, sometimes wallets, money, that kind of thing goes missing. They don’t know what they did with it, and so it’s very. Unsettling for them because they’re looking for it. And my dad, his wallet was just kind of part of who he was, you know? I mean, it was, man, he always had as well in his pocket. Right. And so when his wallet was not where he could find it, it was a big deal. And we spent hours early on sometimes looking for that wallet, and eventually.
I said, okay, I’m buying two new wallets. Look, just like the one that’s missing. Can you make copies of everything that’s in his wallet and let’s just put them in these other ones and see if we can pull it off. And so when a wallet went missing, we would go, Oh, I found it.
And we would just substitute the other one until the other one showed up. So, but having those different ways of relieving his stress. But still honoring him. And what made him feel most comfortable was to have his wallet. Even as Ron and I would go up and have dinner with him, He always wanted to pay and so we learned that when we were up there visiting at night, I’d slip money in his wallet. And we would go out to dinner and he would pay with our money. He didn’t care. He didn’t know. It didn’t make any difference, but it made it easier than him feeling like we were not allowing him to do something he really wanted to do.
So I think sometimes just finding those things in the environment that you can help them with so they stay happy and healthy. it is always the best way to do that. And I know as I coach people at times that are caregiving, they’re like, but you’re lying to them. I’m like, yeah, but at this point, it’s not a bad lie on intentionally negative thing where it’s it. So it’s something that’s helping the person have peace and that’s what we want to do. We’re not lying about anything big that wouldn’t, you know, that would hurt them. But we’re lying about things that actually help give them peace. And so sometimes being sneaky like that is the only way to help handle it.
But I definitely learned some different tricks of how to just avoid some of the things that might cause irritation on dad’s part and irritation or frustration on my part, just learning not to allow those triggers to be in his sight really did make a difference for us. So. As caregivers are listening. I hope some of those little things are maybe going through your mind of what triggers might be there for your loved one if you really can pay attention to their environment and what things kind of prompt them to start doing something, you’ll be surprised what things you can do to minimize that.
]Aly Neises: I think one of the best ways is changing behaviors and changing surroundings to make it as easy as possible for the people that we’re taking care of and removing triggers and understanding what is triggering them is going to make it more peaceful for them. But like you said, it’s also more peaceful for you.
[00:17:06And what a great way to honor your dad and his wishes to pay for things. That is definitely part of who he was. He would not let anyone else pay. Knowing him as I do like that is a great way just to give him some dignity and let him do what is very much part of him, even up until the end. I think that’s beautiful.
Rayna Neises: We didn’t want him carrying a lot of cash around for no reason, because he would put it away somewhere. And I think that was also part of his nature, being kind of thrifty. Then he would see cash and be like, Oh, that can’t, you know, I don’t want that. There that’s not safe. And so he would put it somewhere that was safe and it was so safe no one knew where it was or it took us a while to find it later. And so, you know, oftentimes as I talked to family members, I talk about money missing.
[00:17:55] And I think, you know, honestly, it’s just a really natural thing to do, to not leave money out. And even if it is in your wallet, if they weren’t used to having much money in their wallet when they were younger. They might feel like that’s too much. And so they’re hiding it to make it safe, but they don’t know where it is later. Just, finding those little ways that you can, given the money when they need it, and then let them spend it and then go back to not having a lot of money in their wallet. So just some ways to kind of think through that when you’re dealing with somebody that has those kinds of struggles.
Aly Neises: I love that. I also like how Karen talked about how she wished she would have embraced earlier in her caregiving journey that. The person and the relationship that you have is never going to be the same. I mean, especially with her husband, that relationship is going to forever change. You know, as marriages, we plan for the future. My husband and I talk all the time about what retirement looks like and what even 10 years down the road looks like, and I can’t imagine having all of that disappearing with something like a major health issue with one of us. So I know that that had to be very difficult for her. We kind of negate that and push it in a corner, but in order to move forward, it’s important for people to understand that it’s not going to be the same. It’ll never be the same, unfortunately. That’s just how things like this happen. So the sooner that you can almost grieve that, grieve your hopes and your dreams, and your ambitions, this, the sooner I think you can move forward. Do you have any tips on how to do that or how to even identify ways to do that, to move forward?
Rayna Neises: You hit the nail on the head when you said grieve. And I think so many times when we’re in a caregiving situation has come on suddenly we’re so in crisis mode, we’re so busy just handling the day to day that we forget to stop and think about what it really is that is affecting us emotionally. And that emotional upheaval is the grief or the lack of grieving what’s been coming. So, you know, when I think of, sudden you know, one of the things that comes to mind was even just my dad being able to, stepkids and my grandkids. Those are people that are important to me and bring a lot of joy to my life. But my dad, because of his illness, couldn’t engage in the same way in my family and the way that I really wish that he could have. I think it would have brought him so much joy to be able to be around my family. really, he didn’t have that chance. He didn’t enjoy Jeremy near as much as he enjoyed Delaney, his first granddaughter brought him so much joy and they buddied around together. They just had such a cute, neat relationship and he and Jeremy never really got to bond quite like that because Jeremy was so young when dad started really struggling and not be able to be himself completely.
Now he enjoyed watching them. He enjoyed having them around, but for them to have a two-way relationship was not the same. So realizing that, Oh, they’re missing out on that was disappointing and it was a point of grief of just saying, you know, my dad can’t be the grandpa to them that I know he would have always wanted to be. And I know that had to be heartbreaking for my sister as it was for me, just to see as an aunt know that they didn’t have that relationship. So there’s oftentimes those little griefs that we don’t even realize that’s what it is. It’s just is the new life. But embracing, embracing this is the new life doesn’t mean that there can’t be wonderful parts in it. So watching dad play ping pong with Jeremy and watching them laugh and, and how much Jeremy loved dad’s dog and how they share that love for their dogs looking for those little things can give us hope and give us. They just weren’t the same things that we kind of had dreamed of or expected it to be like. Grieve those things and then embrace what is happening. So again, mindfulness in the moment, they’re still blessings. It just isn’t what we thought it was going to look like.
Aly Neises: I think you’re exactly right. You just have to shift your expectations and like you said, be very open minded about that. There are in a still be good times it’s not all downhill from here. There are definitely going to be happy times and I’m sure Karen can attribute to that. They, her and her husband have seen plenty of things that still occurred. Their children grew up, they’re now adults. Those are some big milestones you go through together. I think. Even when you mentioned earlier when your dad was very advanced, like even seeing those little glimpses of him again, just brought this life back. I think even looking forward to the next time that those moments happen, it’s not very big. It’s not huge by any means, but it’s a little bit of glimmer of hope.
Rayna Neises: And realizing that can happen sometimes you forget to pay attention to the person and realizing that that little smile or that little wink is something that that could happen anytime. Makes you more aware of paying attention in those little moments. Cause you never know when they’re going to happen, noticing and paying attention, we will see them
Aly Neises: Yeah, you can just refocusing you every time. And when they start occurring less and less often, I think you’re more apt to sit and wait and hope for them again to occur more. And so when you do get that moment, I know it’s amazing. It’s that, that little window into their soul almost.
Rayna Neises: It’s that reminder. They’re still in there and they are, they just can’t communicate in the same way. I won’t know exactly what he knew. I, couldn’t tell you but I knew what those little windows of time that he, he knew I was there and he knew that I loved him and he knew that I was helping him. And I think it’s just important to be able to look back on that and say, I know I did everything I could. No regrets.
Aly Neises: No, exactly. That’s the goal to caregive through this season with no regrets, to walk our family members all the way home with no regrets, so that’s beautiful. I love it.
Rayna Neises: I love that I can look back and say, I have no regrets in the way that I cared for him. And I also love that I cared for him in a way that allowed me to walk back into my life and still have a life, have relationships with all those people that I love and have no regrets on that end to.
And so I want to challenge you listeners to make sure that not only are you caring for your loved one in a way that you have no regrets. But you’re also living your life in a way that you have a life to walk back into so that you don’t have regrets for that reason. So just a reminder, you can do it.
Stay focused on the moment with your loved one, as well as being intentional with your own life.
Thanks again for joining us listeners, and this is just a reminder that A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, and legal questions, please contact your local professionals and be sure to take heart in your season of caring.
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