Show Notes

About The Hosts:
Beth Koenig is a caregiver and entrepreneur who has firsthand experience in elder care and disability support. She has navigated the challenges and complexities of caring for her father and understands the emotional toll it takes on families.

Bethany Johnson is a mother and owner of her own local and online preschools who has a toddler. Coming from the childcare perspective, she relates to her experiences with her son and her aging parents.

Summary:
Beth Koenig shares her personal experience with elder care and the challenges she faced when her father had a health crisis. She discusses the suddenness of the situation and the emotional toll it took on her and her family. Beth also highlights the lack of support and resources available for caregivers and emphasizes the need for more awareness and discussion around elder care. She provides insights into the role reversal of caring for parents and the difficulties of watching their decline and loss of independence. Beth emphasizes the importance of focusing on quality time and finding support and resources to alleviate the burden on caregivers.

Key Takeaways:

• Elder care is often shouldered by a few individuals and is rarely discussed openly in society.

• Caregiving for elderly parents involves a variety of services and responsibilities, including financial, housing, health, and legal issues.

• The role reversal of caring for parents can be emotionally challenging, as it involves watching their decline and loss of independence.

• There is a lack of support and resources for caregivers, and the responsibility often falls on a few individuals without much assistance.

• Finding support groups and exploring financial assistance options can help alleviate the burden on caregivers.

Quotes:

• "Elder care is often shouldered by a few and rarely discussed with others."

• "Caregiving for elderly parents involves a variety of services responding to financial, housing, health, and legal issues."

• "The role reversal of caring for parents often involves feelings of sadness and denial as they are losing their abilities."

• "There is a lack of support and resources for caregivers, and the responsibility often falls on a few individuals without much assistance."

• "Focus on quality time because your quantity is rapidly decreasing."

• "If you've been caregiving for a long time and feeling at the end of your rope, take time for yourself and explore community resources for support."

• "We need to talk about topics that are often taboo to make people feel less alone."

Elder Care Resource List

[TRANSCRIPT]

0:00:00 - (Beth Koenig): Welcome to the Deep Dive Podcast with Beth and Bethany. I'm Beth Koenig, one of the hosts.

0:00:06 - (Bethany Johnson): And this is Bethany Johnson, your other host. Welcome.

0:00:12 - (Beth Koenig): Yeah. So today we are going to be talking about childcare versus elder care and telling a bit about our stories.

0:00:24 - (Bethany Johnson): Yeah, this was a good topic because Beth has some recent experience with elder care, and I definitely have some recent experience with childcare, and I feel like they're not really compared very often, although so many people are dealing with both.

0:00:44 - (Beth Koenig): Yeah, definitely. I wasn't aware of how prevalent issues with elder care were until I was kind of thrust into that world last year, which is really interesting. So I guess I'll start with my story here. Last year, I came out in May to visit my parents. I'm originally from California, and my parents decided to move to Pittsburgh. So the pandemic was kind of cooling down, and I decided to get a ticket out here to come visit them in Pittsburgh and came out and spent two months and decided to stay two more weeks.

0:01:26 - (Beth Koenig): So I extended my stay, and four days before I was supposed to fly back, my dad ended up having a heart attack. Yeah, he's currently 73. He was 72 at the time.

0:01:41 - (Bethany Johnson): Was he in good health before then?

0:01:44 - (Beth Koenig): He was independent. He did everything himself. And, I mean, he had some mobility of slowing down, things like that, but it wasn't anything that would keep him from moving around. And so, yeah, he presented as being sick for two days. In fact, the first day we're like, oh, dad has a cold. The second day we're like, he has COVID. Let's test him. The test was negative. And we're like, okay, well, I guess it's just a really bad cold. And so the second day we're like, he has COVID, or there's something really wrong with him. And his oxygen was below 88, which is when you need to get the paramedics when their oxygen is below 88.

0:02:31 - (Beth Koenig): And so we ended up in the cath lab that night. Me, my sister, my mom in the waiting room with my dad in the cath lab with the doctors, and me and my sister and my mom were sitting around talking. I'm like, well, I'm moving to Pennsylvania now. And I just stayed. As a matter of fact, I'm like, yeah, I'm moving to Pennsylvania. Obviously. I mean, it's not even a question. Seriously. I'm like, yes, of course.

0:03:02 - (Beth Koenig): I always said that if something happened, I would be here. And obviously, whatever happens, I'm here. And so I don't know what or where or why, but I'm moving to Pennsylvania. So we got to see him after the cath lab procedure that night, and he was fine. He was talking. We said good night. We loved him, and we went home, and we came back to visit him in the ICU the next day. And he wouldn't wake up.

0:03:31 - (Beth Koenig): He's just semi responsive. I've learned about the AB Poo scale now because I'm taking classes. Yeah, the AVP scale is, like, how to measure their alertness.

0:03:47 - (Bethany Johnson): Okay.

0:03:47 - (Beth Koenig): Yeah. And so it's really cool. It's alertness pain. Alertness and pain are two of obviously, you can see I really need to brush up on my acronym. I remember the acronym. I know exactly what it does, and I can probably look at the test question and say, yes, that person. Okay. That's their AFPU score. But then I'm like.

0:04:23 - (Bethany Johnson): We could even Google search it. Right now you're talking. And I will search avu.

0:04:30 - (Beth Koenig): Yeah. So that's kind of fun. But yeah, my dad was definitely very low on the AVPU score.

0:04:38 - (Bethany Johnson): Alert. Voice pain. Unresponsive.

0:04:41 - (Beth Koenig): Yes. So alert, their response to vocal stimuli, pain. And what was the one? Unresponsive.

0:04:48 - (Bethany Johnson): Unresponsive.

0:04:49 - (Beth Koenig): Yeah, so it depends on which they're at. So alert is like, they turn and look at you when you walk in the room.

0:04:57 - (Bethany Johnson): Okay. Are you reading these on, like, one to ten?

0:05:02 - (Beth Koenig): No. If they look at you and walk in the room, they're alert if you have to vocalize to get their attention. If there's no response until you do it like external rub or you touch them or something to touch, that's considered, like, pain stimuli. And there's ways that we can produce pain without actually causing too much pain. Sternal rub is one of those things. You take a knuckle and rub and it's an uncomfortable pain. In fact, I just feel it right here, right now.

0:05:36 - (Bethany Johnson): It's uncomfortable.

0:05:38 - (Beth Koenig): Yeah. So that's what they do. And if somebody responds to that and they say, oh, responsive to pain. If they don't respond to that, you mark them as unresponsive. And that's when you have to go off of things like, are they breathing? What's their pulse? Right? And so that kind of thing. But my dad was responsive to pain stimuli.

0:05:57 - (Bethany Johnson): Okay.

0:05:58 - (Beth Koenig): And he was sometimes responsive to vocal stimuli. Sometimes not always. Sometimes they had to go and do the sternal rub to him to like, oh, okay. So he was like that. By the time we left the first day, we didn't really know what was going to happen, but he'd kind of shown us signs that he's just very tired from the procedure and probably just needed to let him rest. And my sister got on the horn. It was like, you need to run tests. We need to know exactly what's going on. He needs to go in an MRI, like, stat.

0:06:39 - (Beth Koenig): So she was on that, and by the next day, we found out that he had two strokes.

0:06:44 - (Bethany Johnson): Oh, wow. So you think if your sister wasn't on the doctors like that, they would have just been like, we don't know. They wouldn't have run those tests by themselves?

0:06:52 - (Beth Koenig): No, because the last time something like this had happened where dad had had to be in the hospital in 2012, he was in one of the top facilities in California and we kept asking them what was wrong with him, and they're like, we don't know. We don't know. He just had seizures, he had to be in a coma, blah, blah, blah, blah, blah. Really? And then we pulled his records, and one of his records said that he had a stroke back then too.

0:07:19 - (Bethany Johnson): Oh, wow.

0:07:20 - (Beth Koenig): And he hasn't driven since 2012 because he has seizures. Right. But he's been seizure free for years.

0:07:28 - (Bethany Johnson): Show how much. I mean, one of the first parts of elder care is just being an advocate so they can even get the care that they need.

0:07:36 - (Beth Koenig): Yeah. And that's why I'm really lucky. My sister works in healthcare. She is in the administration side. And I am telling you, if you think having a nurse on your side is good, get one of the admins on your side.

0:07:51 - (Bethany Johnson): Yeah, totally. Okay, so he had a stroke. So what happened then?

0:08:00 - (Beth Koenig): So then we went through the whole thing of, okay, is dad going to live or die? Because remember, his heart's the main thing. We didn't really care about his brain as long as his brain is there and he's kind of somewhat responsive, the next day or two, he kind of started coming out of it. One day we went to visit him and we went from him, like, just pointing around. We couldn't tell what he's trying to point to or say or anything.

0:08:24 - (Beth Koenig): Ends up he has been talking about the lights. We're able to discern that later, much later.

0:08:31 - (Bethany Johnson): Stroke. There's like a very short time frame that you need to get them to the hospital and get this procedure done for them to be okay. Is that not right?

0:08:39 - (Beth Koenig): Well, when he was showing signs, they had pushed meds for him, assuming that it was a stroke because we said, yeah, but anything like, if you think this is a stroke, push.

0:08:50 - (Bethany Johnson): Yeah.

0:08:53 - (Beth Koenig): There had been, like, stroke alert protocols run on him. We went back through his records to make sure they did everything correctly. And if things did happen in the timeline in which they reported it happening, then it was correct. Sometimes I don't know if that's the case, but I'm telling you, that hospital did save my dad's life, and I'm very grateful for them doing that.

0:09:16 - (Bethany Johnson): Okay?

0:09:18 - (Beth Koenig): Yeah. So I think they did the best that they could with what they had.

0:09:22 - (Bethany Johnson): How long was he in the hospital for before you were able to take him?

0:09:25 - (Beth Koenig): He was in the hospital for quite a while. And then after all of his heart stuff, again with us advocating, hey, if there's any issues with his heart, he needs to stay in the hospital. It got to the point where they're like, he's better off in stroke rehab. Like, okay, well, does he still need a heart monitor and stuff like that. And I didn't want him moved to a rehab facility until his heart was taken care of because obviously, if you don't have a heart pumping blood to your brain, you got problems.

0:09:56 - (Beth Koenig): And so eventually, his heart condition was considered stable enough because I had to put it in two stents. He had 100% blockage, and he had two stents, and then he had two other arteries that were also clogged at 30% and 40%, and to this day, that's still the case.

0:10:12 - (Bethany Johnson): Wow. Okay.

0:10:13 - (Beth Koenig): Yeah. So we got to keep an eye on those. But he is on a lot of medicine to prevent stuff from happening, and I keep double checking his meds. I'm telling you, the number one thing, when you have an elder that's on a lot of medication, you got to be on top of those meds.

0:10:33 - (Bethany Johnson): Yeah.

0:10:34 - (Beth Koenig): I literally have alarms going off.

0:10:37 - (Bethany Johnson): I mean, I have to have alarms going off for my own meds. I can't imagine having to there are six kids in my family, and for a while there, I thought my youngest two siblings, they'd be the ones that took care of my parents. They're 70 now, but then one of them went to the military, and one of them got married to an Israeli and lives in Israel now. So now I'm like, well, who's going to take care of mom and dad now? I don't know.

0:11:04 - (Bethany Johnson): It's like a very real it's on my mind because they're getting up there. They're not in the best of health. I mean, they're fine now, but anything could happen at any time. And who would be? They live in Missouri, I live in Vegas, and my other brother lives in Vegas. One lives in Colorado. Who's going to take care of them and how are we going to do that? So this is definitely on my mind lately.

0:11:26 - (Beth Koenig): Yeah, for sure. And it's scary, too, because my whole plan was if something happened, I'd just be here and deal with it. That was my contingency plan, and I implemented it.

0:11:47 - (Bethany Johnson): Yeah, you just did what you had to do.

0:11:52 - (Beth Koenig): Yeah. That was almost a year. It's approaching a year. We're recording this.

0:11:58 - (Bethany Johnson): You own your own business and it's online, right?

0:12:02 - (Beth Koenig): Yeah.

0:12:03 - (Bethany Johnson): If you hadn't, do you think you would have made the choice to move them to you?

0:12:11 - (Beth Koenig): I probably would have quit my job.

0:12:13 - (Bethany Johnson): Okay.

0:12:14 - (Beth Koenig): My parents get enough money where if I move, they could support until something happened to dad, I'd find another job, or I switched to remote work.

0:12:25 - (Bethany Johnson): Okay.

0:12:26 - (Beth Koenig): Yeah. It was never a question. Luckily, because of COVID I switched everything remote anyway, so that was a blessing. Yeah, yeah. And I, you know, everybody's like, oh, well, I want to go to in person, of course, you know, in person, because you're partially in person. And so I'm like, I'm not going to do the in person thing. I don't have the energy for it. I'd love to be able to just visit and hang out while it's going on type of a thing.

0:13:04 - (Bethany Johnson): Well, let's say a little bit about how me and Beth even know each other is that we both run well. Hers is a lot more than preschool. I run a preschool and she runs preschool and lots of other things. So that's how we know each other, because we both do that type of work, although hers is much more different than mine, much more extensive. But we both work with kids. I have a local preschool and an online, and all hers is online now, but she works with kids. From what ages do you work with?

0:13:37 - (Beth Koenig): Yeah, we work the whole gambit all the way from birth up to elder.

0:13:45 - (Bethany Johnson): Okay. So you have experience with all different ages, but thankfully it's all remote now. So you were able to do what you needed and wanted to do, which was take care of your parents when they needed you. Not everyone is able to do that, which is what we're going to talk about in a little bit, because doing some research on this, there's not a lot of support for people who are taking care of their elderly or disabled family members.

0:14:14 - (Beth Koenig): Yeah, there really isn't a whole lot of support. My dad happens to be getting Social Security, and he's considered 100% disabled. He was exposed to Agent Orange, and he has a lot of issues related to that, that they are related to it. Right. And of course, PTSD, because vets have a lot of PTSD. In fact, you can still kind of see it in him sometimes. He wants to know what's going on outside. He gets very uncomfortable if he doesn't know.

0:14:54 - (Beth Koenig): He's afraid that people are going to start shooting at him, which, given where he was in the war, given where he was in the war, he was in the Vietnam War, he was flying airplanes that were getting shot at, and he was shooting back. And so, yeah, he has a lot of issues with that kind of thing. He had those issues for 40 plus years. Right. Because I'm 40 now and jeez, when was the Vietnam War? Sometime before that.

0:15:29 - (Bethany Johnson): Yeah. Okay. All right, so what has this year been like being the caretaker?

0:15:41 - (Beth Koenig): Well, it's been interesting. I kind of liken it to what I studied about child development, because my dad had this period of time where he's just able to point his finger. He kind of moved from the infant phase to the kind of pre verbal phase. Within a day, we got there and he could only gesture towards things, and we tried to give him a pen, and he couldn't write at all. It was just scribbles. And we're like, okay, dad, can you point to this letter?

0:16:19 - (Beth Koenig): And we quickly figured out that his eyes were his eyes, like he couldn't really see. And so we're like, okay, well, we need to give him an alphabet board. Give him some alphabet letters so he can spell stuff, because we quickly learned that it's dad. He's obviously responding. He's showing that he knows things, right?

0:16:40 - (Bethany Johnson): Yeah. He can't communicate.

0:16:42 - (Beth Koenig): Yeah. He couldn't talk at all.

0:16:47 - (Bethany Johnson): That's hard. That is hard when you know they just can't communicate. I can't imagine how frustrating that would be for him and for people. For you guys.

0:16:57 - (Beth Koenig): Yeah. And he had so much patience, though. We kept explaining where he was, what was going on, what was in his environment, and kept talking and explaining things to him. And occasionally we would hear some word that we thought was what it was. And so we were just, like, playing this guessing game. And so that morning, we thought, okay, at lunch, we're going to go out and buy dad an alphabet board, and we're going to train him how to do the letters so that he can spell stuff out and communicate to everybody.

0:17:28 - (Beth Koenig): Right. Then by the time that afternoon rolled around, he was starting to spell out words letter by letter, vocally. We could barely make them out, but he was starting to spell them right now. Of course, we switched to the International Phonetic Alphabet. Both my dad and I are ham radio operators.

0:17:49 - (Bethany Johnson): Okay?

0:17:50 - (Beth Koenig): And so we were able to switch to the International Phonetic Alphabet. But that first couple of days, we're in emergency mode, like, is dad going to die again? Like, die or something, because we still don't know anything about his heart condition or not much anyway, because we're not cardiologists and stuff.

0:18:08 - (Bethany Johnson): Yeah.

0:18:09 - (Beth Koenig): And so that first time, I was like, okay, well, that's just spelling stuff. And so he would try to say stuff, and when we didn't understand, he'd try and spell it. And so he had been pointing down his bed, right? Try and point down below his bed. And he was like we knew he was talking about something to do with below his bed and something to do with the blanket. And we kept hearing food. He was saying food.

0:18:34 - (Beth Koenig): Food. And they spelled it F-O-O-D. We're like food. Okay, but dad, there's no food under your bed. There's no food there. You don't have food. Do you want us to get you some food that you can hide under your bed for later? You have your food up there. It's going directly into your stomach. The poor guy, he then figures out how to grab his blanket, and he pulls it up and keeps grabbing it and then makes a tossing motion. And my mom's like, oh, you want your foot under the blanket?

0:19:15 - (Bethany Johnson): Foot with oh, man. Wow.

0:19:23 - (Beth Koenig): Yeah.

0:19:24 - (Bethany Johnson): I'm going through that with my two year old. He's pointing and saying something, and I'm like, what is it? What is it? What do you want? And then I'm finally like, oh, yes, that so it is like, reverting back to childhood and infancy.

0:19:39 - (Beth Koenig): Yeah. And toddlerhood. And it's interesting because that's how I relate it. My dad is smart, much smarter than me, knows much more about what's going on, but physically, he is a toddler. You know how you have to make sure that you have food that they're not going to choke on and stuff? My dad is a choking risk. The other day I had to do the Heimlich on him.

0:20:06 - (Bethany Johnson): Oh, my God.

0:20:07 - (Beth Koenig): Days ago, he was choking on a noodle in his soup.

0:20:11 - (Bethany Johnson): Wow.

0:20:12 - (Beth Koenig): Yeah, it went down the wrong way and he was turning purple, which is the first step to going cyanotic because they get the blood rush to their face from the straining, and then that starts turning purple because they're using up all the oxygen. And I'm like, no, we're going to get this out. So I just jumped behind the bed and squeezed them real hard and it popped out.

0:20:35 - (Bethany Johnson): Wow, that's scary.

0:20:39 - (Beth Koenig): Actually, yesterday I was in class and we were looking at the back of an ambulance. Well, it's actually a QRS truck. Anyways, they have these things that probably people have seen on TikTok. It goes over the face and it's like a plunger.

0:20:51 - (Bethany Johnson): Lifeback. Yeah, the life back because I'm terrified of and we did baby led. Weaning with Silas, so we're feeding him food at like two I mean, at six months, we're, like, feeding him normal food just at baby pieces. But I was so scared. So I got the life back. And thank God we haven't had to use it yet. But yes, I have one right in the kitchen next to his chair. We have one in the car.

0:21:13 - (Beth Koenig): Yeah. I'm telling you, I can't wait to get ours and train everybody how to use it. And we will probably end up ordering, like, one to keep in his go bag.

0:21:23 - (Bethany Johnson): Yeah, definitely.

0:21:25 - (Beth Koenig): Because I can't rely on somebody being able to get behind him and do the heimlich. And the life facts are more effective sometimes, especially if you can't do the heimlich effectively. I could barely get my arms around him, and then I was just pushing forward and basically pushing him forward with my chest while pulling in with my arms because I couldn't get all the way around him to get really good grip.

0:21:51 - (Bethany Johnson): Yeah, that was great.

0:21:54 - (Beth Koenig): Yeah. Luckily it worked. But we're going to fix that. We're getting life back.

0:21:57 - (Bethany Johnson): Get that life back. Yeah, totally.

0:22:03 - (Beth Koenig): It's so fascinating, the parallels, right? Like, you already have a life back. I should have asked you. Hey, what do you do if Silas chokes?

0:22:12 - (Bethany Johnson): I mean, I am CPR and heimlich certified and all that, but lifeback honestly, I trust more than that because I've never had to do the heimlich on anyone. For real. They say that to use that after you do the Heimlich if the heimlich is not working. But I don't know, I probably like, in a panic moment would probably go for that first just because I'd be so panic trying to get it out as quick as I could.

0:22:37 - (Beth Koenig): Yeah, and I think the life back is probably more effective because we don't want to do stuff where we could potentially get that stuff further down in. We want to get that stuff out.

0:22:54 - (Bethany Johnson): I don't know, I have on hand for kids and elderly and anyone, really. I'm like carried in our diaper bag or in my purse or something. You never know when someone's going to choke. Even myself. Like you could do it on yourself.

0:23:07 - (Beth Koenig): Yeah, right. And that's exactly what we're doing is we're going to be training dad to grab it and use it if he needs in case he lives around somebody who's like panicking. He can just grab it and do it himself and stuff. I think that I was talking to the QRS guys that had the Quick Response Unit. Paramedics. Not Paramedics. I think it's EMT. Quick response unit.

0:23:34 - (Bethany Johnson): Okay.

0:23:35 - (Beth Koenig): It's basic life support. Basically. The difference is that those are just EMTs. They're the basic level EMTs. They're not advanced EMTs or paramedics. Paramedics are the ones with degrees and they have a lot more experience and stuff.

0:23:47 - (Bethany Johnson): Okay.

0:23:49 - (Beth Koenig): And so, yeah, the QRS guy was like, yeah, we've had two saves in this township alone. In our township they've used it twice and saved people.

0:24:00 - (Bethany Johnson): Nice. Yeah, the Facebook ads got me on that one. Honestly, that was enough because I was already paranoid. I mean, I worry about everything. So once I saw that I was like, oh, that's what I'm getting. And then I felt better, even though gave me peace of mind. Thank God I haven't had to use it.

0:24:19 - (Beth Koenig): Well, speaking of peace of mind and baby equipment, I've thought about putting my dad on Apnea monitor.

0:24:26 - (Bethany Johnson): Like the owl at we All Got a Baby when he was a little and then I read that it's pretty much just for peace of mind and it wasn't like it has an oxygen monitor, but it only beeps if it goes below 80. And I'm like, what? Aren't they already dying if their oxygen is below 80? Right. Stuff like that. But then they ended up recalling it anyway.

0:24:51 - (Beth Koenig): Oh my gosh. They recalled it?

0:24:53 - (Bethany Johnson): Yeah, because it was either giving people false alarms and making them crazy because they thought their baby was dying when it wasn't or it wasn't notifying them when they needed it to notify them. Never like FDA approved anyway. So I think they're trying to redo it so they can get approval or something.

0:25:13 - (Beth Koenig): Yeah. I think we'll all end up doing is just buy some medical equipment, 1000 some OD dollar medical equipment that you can just have on them when they're laying down. I'll probably end up forking over a lot of money for the equipment.

0:25:31 - (Bethany Johnson): I understand that.

0:25:33 - (Beth Koenig): Yeah. Because I'm like, I am not losing my kids to sit. This does not have me.

0:25:39 - (Bethany Johnson): So scary. So scary.

0:25:41 - (Beth Koenig): Yeah. Luckily you're out of that time frame now, aren't you?

0:25:45 - (Bethany Johnson): Yes, I am. He's like 26 months now, so that's good. It doesn't keep me from worrying about everything. I feel like I keep my worries pretty in my head because my husband's very why would you think about that? Don't think about the bad thing. Blah, blah, blah. And I'm like, how do you stop thinking about it? It just blows my mind that he doesn't worry about all of this. It just blows my mind. He can just turn his worries off.

0:26:16 - (Bethany Johnson): We're working on me turning my worries off, but that's not happening.

0:26:21 - (Beth Koenig): The way I turned off my worries is I went to go take an EMT class. I was going nuts with all this stuff. I'm like, what the take the power.

0:26:30 - (Bethany Johnson): In your own hands.

0:26:32 - (Beth Koenig): Yeah. I went and I signed up. The EMT class is actually just around the corner from here at the community college. We live, like, literally a block from the like, not even a block from the community college, literally. Right. Actually, if that house over there wasn't in the way, I could just walk directly to the college nicer. Into the street, basically.

0:26:59 - (Bethany Johnson): So did you move your dad back into your mom's house?

0:27:04 - (Beth Koenig): Yes. So originally when he went home from rehab, he was at my sister's house. He was there for 12 hours. And then my sister woke up and my dad was cyanotic and had to go to the Er and ended up having COVID pneumonia.

0:27:21 - (Bethany Johnson): Oh, man. I had that when I was pregnant. That's no joke.

0:27:25 - (Beth Koenig): Yeah. And of course, the rest of us caught COVID, so dad got over his pneumonia in time for all of us to be better. And then we went and we were doing shifts. Three of us, my sister, my mom and I were doing shifts, taking care of him. Twenty four, seven, at my sister's house. Instead of putting him in a nursing home because they wanted to send him to a nursing home, we're like, no, we do not approve that placement.

0:27:52 - (Beth Koenig): You will not be signed to a nursing home. You're going to send all the equipment here to my sister's house. Right. And so we arranged all of that and got them sent to my sister's house.

0:28:03 - (Bethany Johnson): Was all the equipment and stuff covered by his insurance and everything?

0:28:09 - (Beth Koenig): Well, we found out later that the greater majority of everything we bought was yeah, it was covered by the VA, but we spent, like, $1,000 on all the stuff. My sister thought we might need to take care of him because ultimately, we wanted the best for him, and we wanted to have stuff on hand to use right away and just be prepared. And we're overprepared. We still have stuff left over that we bought.

0:28:34 - (Bethany Johnson): Yeah. I can only imagine that his life is in the three of your hands. Learn a lot and buy a lot and just be on all the time. When you're on shift, you're literally someone's life is in your hand. Your dad the most important person to you a lot.

0:28:55 - (Beth Koenig): Yeah. And so we would hang out in that room at night in the living room, we'd watch TV and stuff and try and develop some sense of normalcy, and we'd pause the TV for diaper changes and stuff. It was going back to infancy, basically, when he had that COVID, all the potty training independence he had at the rehab facility that he came to my sister's house with was lost during that COVID pneumonia.

0:29:30 - (Bethany Johnson): Oh, man.

0:29:30 - (Beth Koenig): And he regressed, and he had to build back his strength and stuff. And then eventually he had another episode that landed him again in the hospital, but this time he was going to be able to go to rehab again and get stronger. And I told dad, Listen, you're going to do this. I'm going to go to California. I'm going to bring back Bobby, my business partner. I'm going to move him to Pennsylvania to help with the house and everything. And we need this.

0:30:08 - (Beth Koenig): So I'm going to go and I'm going to get a U Haul. So I went off there playing, got a U Haul, went and got the trailer, went and drove. I'm driving across the country with my business partner, his dog, his cat, and me and the U Haul and the trailer behind us. Like, large white trailer we had it's one of those trailers that you haul, like, equipment and stuff in, like a big one, though. Our entire ebay store fits in there.

0:30:41 - (Bethany Johnson): Okay.

0:30:42 - (Beth Koenig): Yeah. So it was an adventure, and I got back, and we had a few days before they let dad out, and we focused on getting my mom's house ready, and we thought he was coming home one day. And so we called these movers, right? Because he had this hospital bed, this giant hospital bed, like, heavy thing, and the VA was like, we can't move that. It belongs to the prosthesis department, which means he owns it. It's part of him.

0:31:13 - (Beth Koenig): Any vet that has a prosthetic, which they consider the hospital bed to be a prosthetic for some unknown reason. Yeah, I know, right? That's the category it falls under. It's so weird. Yeah, but they said, we can't move it. It's a prosthetic device. We can't move it. You own it now. You have to move it yourself. And so we called moving Company, and they're like, yeah, for $600, we'll do same day move. So we forked over $600 to move it the 15 minutes from my sister's house to my mom's house.

0:31:44 - (Bethany Johnson): Wow.

0:31:45 - (Beth Koenig): And they're like, hey, there's room in the truck. Can we take some of this other stuff for you, too? We're like, oh, yeah, that'd be great. Thank you so much. And so we brought over a bunch of other stuff that we needed, and then we filled my mom's car with some miscellaneous stuff, and we got him moved over, like all this stuff moved over to the house and set up not that day, because in the middle of setting it up, we figured out that.

0:32:08 - (Beth Koenig): He wasn't coming home that day. Why do we have emergency moving then?

0:32:16 - (Bethany Johnson): Oh, man. Wow. There's so much involved that you wouldn't think about until you're going through it.

0:32:24 - (Beth Koenig): Yeah, it's really amazing. I guess it makes sense because technically everybody owns their own bed, right?

0:32:35 - (Bethany Johnson): Usually not like if you're staying somewhere, though.

0:32:39 - (Beth Koenig): Yeah, I know. And it's kind of weird because they considered my sister's house to be his home placement.

0:32:46 - (Bethany Johnson): Okay.

0:32:47 - (Beth Koenig): Whereas technically it wasn't his home placement, it was just where we had space for him.

0:32:53 - (Bethany Johnson): So now he's all set up back in his old house with your mom?

0:32:56 - (Beth Koenig): Yeah. In fact, my dad is the only one who really has the stuff set up. The rest of us are kind of still trying to work out the house.

0:33:09 - (Bethany Johnson): Yeah, well, at least he's set up. Okay. And how's he doing now?

0:33:15 - (Beth Koenig): He's doing better. He went from that infant phase to the toddler phase where he's using a walker and able to walk around with assistance. He can go from his bed to the bathroom by himself and back again. He's able to eat most foods, but we still have to watch him for the choking risk. So he's very much very much like a typical toddler would be physically, but mentally he's much higher functioning, of course.

0:33:49 - (Bethany Johnson): Is he talking now?

0:33:50 - (Beth Koenig): Yeah, he still has speech issues, but he talks and for the most part I can understand him. I repeat back what he says and then he realizes if I mishear something and he'll correct me.

0:34:08 - (Bethany Johnson): Okay, so I have some things here, some bullets that I'm going to read out and then we can discuss them as they come. Okay. Here's just a few things that make it different and or harder for elder care as opposed to childcare number one. Unlike childcare, which is often shared and even celebrated in our society, elder care is often shouldered by a few and rarely discussed with others. Does that apply? I mean, right now it's you and your sister and your mom, right?

0:34:40 - (Beth Koenig): Well, in the house it's me, my mom, and my business partner. But my mom's memory may be going.

0:34:50 - (Bethany Johnson): Downhill and that's another thing that comes up, is that, let's see, where is that one? Most family caregivers don't have a nine month preparation time for their new role as mothers do. Friends and family don't throw a party or a shower for new caregivers with gifts. As pregnant moms get, friends are often uncomfortable to offer respite. Whereas some friends might be willing to babysit your kid. There's no implicit rules on the roles or clear cut timing for when to assist in a greater capacity, when to call upon paid help. Many families find themselves caring for multiple family members at once over a period of many years. So, like, if something happens to your mom, then you're caring for both of them and you don't know.

0:35:35 - (Bethany Johnson): It's not like it reaches this 18 year old all right, you're on your own. It's like until a parent passes away, which is not what any child wants, but also at the same time, it's really different in that way, the uncertainty of how long this is going to go on and you don't have as much support. It's not this thing that's, yay, there's a new baby. It's like, oh, I'm sorry, you have an ailing parent and then you're not really getting any help, any babysitting services to give you a break and that type of thing.

0:36:07 - (Beth Koenig): Yeah. And luckily, because my dad is a vet and he's considered 100%, the VA is paying for a caregiver to come in three times a week for 4 hours and then we get respite every other week for 8 hours.

0:36:24 - (Bethany Johnson): Okay.

0:36:24 - (Beth Koenig): And so we have like, I think it's every other Tuesday we have the eight hour respite and then Monday, Wednesday, Friday, we have the four hour caregiver that comes in. She helps with challenging and doing all these things. I mean, at any point in time, if my dad has an accident or something, me and my mom will have to clean them up. In fact, I had to change his bed the other day, right? It's like, okay, dad, what happened here? And he explained it to me. I'm like, okay, well, these things happen. Let's get you in the bathroom and let's go get everything.

0:36:59 - (Beth Koenig): And I stripped the bed and made it and that's just the way it is, right?

0:37:03 - (Bethany Johnson): Yeah. Just as if a preschooler did that. All right, well, let's just there's a lot of similarities and a lot of differences and even the role reversal talk about, like, these are the people that took care of you for your entire life, who changed your diapers, who raised you and taught you how to talk and feed yourself and all this. And now you're doing that for them. What is that like for you?

0:37:31 - (Beth Koenig): Well, you know, it's interesting because I was changing my dad's diaper back when I was at my sister's house and we were going through twelve diapers a day. It was unsustainable. And luckily the VA eventually kicked in and started sending us diapers and stuff, otherwise just spent thousands of dollars in diapers. And so a couple of times my dad's, like, essentially he really didn't like that he had to do this, that I had to do it. Right.

0:38:00 - (Beth Koenig): Like, dad, well, listen, you took care of me when I was a kid and now you need help. And so that's what I'm doing. This is just what has to be done right now. There's nothing we can do about we just have to do it. I don't mind. I'm here.

0:38:19 - (Bethany Johnson): Yeah. It's such like a vulnerable place. I feel like for the parent to be in, they've always seen themselves as your caretaker and the person who's going to be there for you no matter what. And then all of a sudden you're changing their diapers. I can only imagine what he's going through, just experiencing that loss of autonomy to me for himself, while also knowing that you're stepping up. What would it be like to know that his family wouldn't step up?

0:38:53 - (Bethany Johnson): It would be hard either way, but at least he has someone. But getting over that, that like, okay, my kid's changing my diapers now. I can only imagine. I mean, when that time comes with my dad, I don't think he's going to be very gracious about it. I think that's going to be like a thing, just personality.

0:39:11 - (Beth Koenig): Yeah. We've been very fortunate with my father. My mother is notoriously a lot more difficult to take care of because I've been there for her surgeries and different things like that, and she's just more difficult to take care of. My dad is relatively easy now. From a medical standpoint, he's been a lot more difficult.

0:39:32 - (Bethany Johnson): Yeah.

0:39:33 - (Beth Koenig): And the worry and the constant anxiety is definitely heightened with his care versus my mother's. Just more difficult to take care of. Like, oh, can I get more salt on this? Or oh, can I get this? And I need their water. And I'm like, yeah, buy a shorter cook. She's like, Well, I want all my food at the same time. I'm like, no, this is the way that it came out of the oven. This is the way you're getting it.

0:39:59 - (Beth Koenig): You can eat the same way I eat. It won't kill you. I don't care if your potato and your salad don't come out at the same time. One's cold and the other is hot. Deal with it.

0:40:12 - (Bethany Johnson): Yeah. So I think that greatly depends on the parent, how difficult it's going to be. For sure.

0:40:18 - (Beth Koenig): Yeah. I definitely can see my mom. And then of course, with her memory issues and stuff, she's had cognitive issues before. In fact, that's why she was eventually let go from Home Depot. Young she had an accident that drove the disc into her spine. She had to have surgery, cervical spinal cord surgery to get that disc fixed so that it would not go into her spinal cord and cause paralysis, potentially.

0:40:47 - (Beth Koenig): And she was able to do that. That was one of the other times I saw my dad really scared and worried.

0:40:54 - (Bethany Johnson): Yeah.

0:40:56 - (Beth Koenig): She was in the surgery way back then. That was in the early two thousand s. I was still in high school at the time.

0:41:02 - (Bethany Johnson): Okay.

0:41:04 - (Beth Koenig): And he was very worried about that. And then the other time I saw him worried was when he was going to go into the cath lab. He was scared. You could see it, but yeah. My mom, she had the cognitive issues. She worked for Home Depot and some other places, and she eventually got let go from Home Depot because she was falling asleep in the call center. Just like, couldn't stay awake. She was having issues with other things there and so they let her go and I said, mom, you know what?

0:41:35 - (Beth Koenig): You have issues. We should really apply for disability because this is not normal. A normal employee would not do this. And this is why you were let go. Like, we have a case here. And I helped her apply for disability, and she ended up getting it, and she cried. She's like, Beth, I didn't know there's anything wrong with me. I'm like, mom, yeah, you did, because you were telling me your symptoms. The doctors, they took one look at her and they're like, yes, something's wrong.

0:42:08 - (Bethany Johnson): I was just diagnosed with a REM sleep behavior disorder, which oftentimes leads to Parkinson's. So, like, one of my biggest fear is that Silas, my two year old, before he's going to have to be him and my husband are going to have to be caring for me before size even an adult, he's going to have to move into this caretaker role especially. I mean, hopefully it would be Cameron, but God forbid anything happens to Cameron, it's like putting that on him.

0:42:42 - (Bethany Johnson): And would I be the I say this about my dad, like, oh, he'd be hard to take care of. Would I be hard to take care of? Am I going to be in this mental thing? Don't remember or where I'm just like so I don't know. I would hope that my mental health would be okay, that I won't turn into a mean person when someone's taking care of me. But these are definitely fears I have that if that happens. I don't know.

0:43:09 - (Bethany Johnson): I don't want my son to have to take care of me when I'm not even elderly.

0:43:14 - (Beth Koenig): So you're talking about REM sleep disorder?

0:43:18 - (Bethany Johnson): Yes. Just how after getting diagnosed with that with REM sleep disorder and finding out that it usually leads to Parkinson's or Alzheimer's, and I'm still young and they say within twelve years. 70% to 80% within twelve years of the sleep or ten years of the sleep disorder starting, which was seven years ago for me, there's 70% to 80% of people develop Parkinson's. So that would be in like three years. There's like a 70% to 80% chance that I would develop Parkinson's. And I'm only 35, and my son is only two.

0:43:55 - (Bethany Johnson): So if he has to start taking care of me or at least see me, whatever I may end up at before he's even an adult, then, like, this might be a reality for him way before it ever should be. And I don't really know. Just that thought if I'm I'm already thinking about, like, what to do with my parents, and now I'm thinking about what do I do with me in the next ten years.

0:44:25 - (Beth Koenig): Yeah.

0:44:26 - (Bethany Johnson): Want to put that on him? That is not what I want his teenage years to look like, or even in his 20s.

0:44:34 - (Beth Koenig): Yeah, I know, and it's weird because I had something similar. I actually had a medical diagnosis myself recently where I was having trouble with UTIs. And I went to the doctor, and I was on my third antibiotic when I went to the Er. And they're like, you know what, let's just go and do a Cat scan. They did the Cat scan. Then they come back and they're like, you need to go see a specialist. We're going to get you to a specialist.

0:45:03 - (Beth Koenig): Here's the specialist you need to call and make the appointment with. And of course, they got me, like, an almost immediate appointment. But in the meantime, I'm looking up my condition, bladder diticulitis, and seeing the pictures of these bladders and seeing that the preferred treatment is surgery and saying, oh, my gosh, I might need a surgery, and surgery means that I might die. And I just saw everything start flashing in front of me, right? And I'm like, my parents, and I'm like, okay, well, what's the fastest way to get everybody up to speed with my business? What's the fastest way to make sure that my parents are taken care of? Because my sister actually has kidney stones and stuff, and she was dealing with a kidney stone surgery last week.

0:45:47 - (Beth Koenig): Our family just has a huge amount of health issues that we're dealing with. Luckily, my dad's the only one that's been quote unquote life threatening thus far, so we've been very fortunate for that, but still a lot. And so I went, like, nearly a week thinking I might need surgery and could potentially die. And I was like, okay, I got to go see the specialist. And I was just so nervous walking in and see the specialist ends up he's referred me to a specialist specialist.

0:46:20 - (Beth Koenig): So the two questions he did answer is, yes, I could fly because I had a trip going to Phoenix, in fact, in person for the first time there. Yeah, that was super fun.

0:46:31 - (Bethany Johnson): Yeah. Meet in person after what, like, three years of knowing each other online?

0:46:37 - (Beth Koenig): Yeah, we knew each other for three years and finally met in person, like, a week or two ago.

0:46:43 - (Bethany Johnson): Yeah.

0:46:45 - (Beth Koenig): Crazy to think, but yeah, we're like, let's start a podcast.

0:46:53 - (Bethany Johnson): Yeah. And my parents are like, when I'm telling them this, they're like, we're going to be here. We're going to take care of you no matter what happens. I'm like, guys, you're, like, 70. I probably going to have to be the one taking care of you. So who's going to take care of all three of us?

0:47:08 - (Beth Koenig): Yeah.

0:47:09 - (Bethany Johnson): Work out.

0:47:11 - (Beth Koenig): Yeah. It's like, you basically have to get enough money where you can literally afford to turn your house into a private nursing home.

0:47:17 - (Bethany Johnson): Yeah, exactly. Which will never happen for my parents. And I'm not making that much money or anywhere close to that much money right now. Yeah. It's scary to think about. You don't want to think about that your parents take care of you or then wondering who's going to take care of them. And I don't know, it just makes you think about a lot of stuff that you wouldn't normally have to think about.

0:47:40 - (Beth Koenig): Yeah, it's really interesting because I know this other guy, he's disabled. I think his name is Shane, shane Burkhart. He actually married a woman that they just lived together and she takes care of him and people are like, oh, your relationship is fake, and blah, blah, blah, blah. Right. Because she has to physically take care of him. But she's also gained things out of the relationship and things too. Right.

0:48:10 - (Beth Koenig): And so in this case, she chose she knew going in, this is what this is going to be. And she chose that life for herself to be with this person. And I totally get that. I mean, my fiance is blind. I chose to be with him. Like, he's my best friend, right. Eventually he'll move out here. He's actually out here visiting. He flies back in three days. Yeah, I'm doing a podcast stuff, spending time with them.

0:48:37 - (Bethany Johnson): Oh, no, sorry. The update.

0:48:44 - (Beth Koenig): Yeah, but it's really good because I think I need to get out and talk about this stuff because that thing you were reading on that bullet point, it's like, yeah, people don't want to talk about it. Everybody prefers talking about the cute baby and stuff. And then there are a lot of parents that don't get enough support, even with the cute little babies.

0:49:05 - (Bethany Johnson): Exactly. Yeah, totally. I mean, listen to this. Seasoned mothers are happy to impart wisdom on new moms. Parents gather at school pickup and informally support one another. Friends are eager to babysit. Employers are often forgiving when parents need time off to care for their sick child. And that's not very true. But demands of care typically get easier as the child ages. And many families plan children separate ages. Whatever. But that doesn't happen. There is no, like, let's meet up at the parent drop off and talk about how hard things are.

0:49:37 - (Bethany Johnson): I did see some support groups when I was looking this up, but it's just not something that you hear about a lot. So people who are doing that or caring for people are often alone in that, and that just makes it so much harder.

0:49:55 - (Beth Koenig): So that was my Echo auto trying to connect to my phone.

0:50:00 - (Bethany Johnson): That's okay.

0:50:01 - (Beth Koenig): I can barely hear it, but yeah, it's so much hard. And I hear a lot of parents that are complaining about stuff I'm like, that relates to me and my parents, like, what's happening with the ultra care situation? I'm like, why is there just so much correlation? I never heard about this before. Right. I was aware of people that, oh yeah, our moms lives with us and we help take care of her and take her to her doctor's appointments and stuff. I'm like, okay, cool. So you kind of do the stuff that I was doing with the group home where we took care of people with disabilities right. And so that's the world I came from.

0:50:42 - (Beth Koenig): We ran a private group home where we help people with disabilities take care of each other. We all pitched in and all helped take care of each other and we had an informal group home going that eventually I decided that I wanted to do a foster adult. And so I had a foster adult guess you call my foster son for four and a half years.

0:51:08 - (Bethany Johnson): Oh, okay, that's cool.

0:51:10 - (Beth Koenig): Yeah. And so I did that for four and a half years and then I got sick and I couldn't take care of him as well. And so he decided to go live with his parents. And I eventually figured out that I should not be eating meat products because it was making me smoothies.

0:51:32 - (Bethany Johnson): Girl, I've been doing those smoothies.

0:51:34 - (Beth Koenig): Yeah, that should probably be an episode in of itself, all the Christian stuff.

0:51:42 - (Bethany Johnson): Yeah, for sure. We should definitely do an episode on that.

0:51:45 - (Beth Koenig): Yeah. But yeah, it's amazing. I just come from that world of disability centric stuff and so when my dad can't communicate very well, I'm like, okay, well, make adaptions for it, right, no big deal. It's like, okay, he could talk better before, but now he can't, so we'll just do this. Right.

0:52:11 - (Bethany Johnson): You have a lot of experience with that type of stuff and with caregiving in general.

0:52:15 - (Beth Koenig): Yeah. Growing up autistic, I grew up, I have Asperger's syndrome, high functioning autism, and I never understood what's going on. I had so much anxiety, I'm like, and I just couldn't understand anything that was going on. But I'm probably the last person my parents were pegged to be taking care of them. Right. Like, this is the kid that people said we should have institutionalized. Right.

0:52:46 - (Bethany Johnson): Wow, that's crazy just to think about it that way. But you knowing what it's like to not be able to kind of understand what's going on and communicate makes you, I mean, almost makes you a better caregiver. And just that being leading into your role of your own company and all the stuff you've done kind of makes you the best option for a caregiver. So that's really funny how that changed and worked out that your experiences helped you take care of them when it was so hard growing up and now you're able to do it for them like they did for you.

0:53:19 - (Beth Koenig): Yeah, because it was my dad. My dad would talk to me for hours on end and explain everything to me and that helped me so much, that helped me learn and grow so much. And then later on when I branched out and I was kind of doing my own stuff in my twenty s and figuring out things from there, I was able to be like, okay, well, I need to make people explain things to me. And so I did. When I didn't know something, I made people explain it to me and I asked questions and I got good at asking questions, and so sometimes I know to stand back and let things play out and then I go back and I ask questions later because my dad taught me there's a time place to ask questions too.

0:54:06 - (Beth Koenig): Like you don't ask about the black girl in the car skin color when you're driving with her right there. Right. Because I grew up in a very sheltered white Caucasian environment. Yeah. My parents were very everybody is equal and all these things, but at the same time I'm like, but her skin is so pretty. Maybe we shouldn't talk about that. Like with the kid right there. Because she was a kid, she was my sister's age, three years younger than me, and so it wasn't socially appropriate to be wearing in that context.

0:54:49 - (Beth Koenig): Right, yeah, I mean, maybe if they were talking about makeup or something, but just out of the blue.

0:54:59 - (Bethany Johnson): Yeah. Okay, here's another some bullet points. Let me see how they hit you. Elder care is unpredictable, variable events that can occur suddenly or creep up slowly. Obviously, yours was pretty sudden. Childcare focuses primarily on healthy children who live with the person. But elder care involves a variety of services responding to financial, housing, health, and legal issues that often need to be delivered at a distance. So it's like you're not just worrying about I mean, you're not just worrying about, as a parent, your own finances and they're part of they're all just kind of under you. But then you're dealing with a parent and it's your finances and their finances and their house.

0:55:47 - (Bethany Johnson): And so it's like the responsibility of a whole nother life that is now on you to figure out and they may not be in reality of what needs to happen or be happy with what needs to happen. So that's a whole nother can of worms that you're dealing not just like trying to keep them alive, but also trying to deal with their assets and their finances and all of that. And you might not even have the I mean, most people don't have the legal understanding on how to take care of that or even the financial ability to hire lawyers and do all this stuff. So then you have all of that falling on you as well.

0:56:25 - (Beth Koenig): Yeah, it's really hard. In fact, we're still trying to work out some of the legal stuff and figure out what we're going to do with that. So yeah, maybe text me later, figure.

0:56:39 - (Bethany Johnson): Out your legal stuff. Beth.

0:56:44 - (Beth Koenig): Yeah. Literally, I'm really bad. I'm always on lives telling people like, oh, wait, can you text me later about that?

0:56:53 - (Bethany Johnson): I understand that. I forget. I just had to tell my employee. She's like, I'm really sorry to bother you. I know I already brought this up and it was like, oh, please don't be sorry. I'm like, you need to remind me. It's totally fine if you need to remind me like, ten times, I promise. I have ADHD, so my brain is like my working memory is, like, zero. So I will forget something immediately after.

0:57:14 - (Beth Koenig): Being told, yeah, my working memory is okay until something more important comes up and then gone. And my preferred focus. I can focus on things with infinite patience and infinite focus for hours and hours on end. I will forget to eat. I will forget to sleep. I will forget everything but what I am obsessed with. And that's really good for getting projects done, but.

0:57:53 - (Bethany Johnson): Not so much like, oh.

0:57:56 - (Beth Koenig): My gosh, the Alexa alarm is gone off. Maybe we should go give dad his meds right now. You can need to get up and walk. You watch Sudden move like, 10 minutes ago.

0:58:08 - (Bethany Johnson): What about feeling side of things? Let's see about this. Plenty of feelings come into play for caregiving scenarios. Both emotions are very different. Raising a child is filled with moments of joy and satisfaction as the little ones grow and become more independent, which I can vouch for. Watching Silas grow and become more independent, he's now in this me phase. Everything is no me, no me, which is frustrating, but also like, oh, he's wanting to be his little person.

0:58:33 - (Bethany Johnson): But caring for parents, on the other hand, often involves feelings of sadness and even denial as they are losing their abilities. Instead of becoming more independent, they're becoming less independent and requiring more assistance. So what's that like? Just like knowing that at least when you're taking care of a kid, you're raising them for the purpose of raising them into an independent adult. And you see that happening every day. They're getting more independent and they're learning more stuff. Whereas when you're caring for a parent, every day, they're deteriorating, almost.

0:59:01 - (Bethany Johnson): And you know that the goal isn't to raise this functioning human into a it's to take care of them as they're going, as they're deteriorating. So what's that like on your own psyche and emotions?

0:59:18 - (Beth Koenig): It's hard because I'm like, well, I have this toddler, right? Essentially my dad and I have this teenager, like, cranky teenager, which is my mom. Mom. I'm sorry I called you cranky teenager. But at times, that's just the way it is. And so I kind of equate it to that because it's easier for me to think in those terms. And then I realized that I'm not raising people that are going to continue on. They're going to be at the end of their journey.

0:59:57 - (Beth Koenig): I am marching not towards the future, but towards the end. And that fills me with anxiety. Yeah, I don't want to march towards the end. I want to march towards the future. And that, to me, is the hardest thing. It's really the hardest thing. And that, I think, takes the most toll on me is when I stop to think about it. Marching towards the end is not something I like. I want to be moving forward. I want to keep everybody happy and healthy and moving forward as much as possible.

1:00:42 - (Beth Koenig): And so on my day to day things, part of Dad's rehab and stuff is that I can't do too much for him. We shouldn't be doing too much for him. He needs to do more for himself. He needs to practice moving. If he's in an OD position and he's okay, then we're going to leave him there to get himself out of the odd position he's in. If he's doing something OD that looks strange to us, we're going to ask him to explain it. And if he can explain it, we're going to let him do it because he's an adult.

1:01:12 - (Beth Koenig): Right. Whereas if it was a toddler, be like, we probably shouldn't do that, but it's my dad, so I let him use his reasoning and tell me what's going on. And so I guess in that way, it is quite a bit different. Right. You have to respect their autonomy and all these things. So it's not like a toddler. I can just pick them up and say, okay, we're going to go to the room now and do this and that. Right.

1:01:39 - (Beth Koenig): But it's also my dad, so it's like, dad, we need to do this because of X, Y and Z. He's like, oh, okay. And so that kind of makes things easier, too. And of course, my dad loves us and he wants to be around for us, and he understands that you go anywhere and that's not part of the deal. You're going to stay here and you're going to live with us, and that's the way it's going to be, period. Yeah. And my mom is like, she's having those memory episodes and stuff, and we're trying to figure out her medications.

1:02:19 - (Beth Koenig): And there's an interesting story about cat bite, but we need content for another day, too.

1:02:30 - (Bethany Johnson): Okay, well, just to give a few for anyone who is going through this and needing some support, there are caregiver support groups out there, so check those out. As we talked about, there's not a lot of support for that. There's also financially, there's medical care, tax deductions, dependent care accounts, dependent care tax credits. So look into those. If you are a caregiver and you get all the help financially, you can for that.

1:03:03 - (Bethany Johnson): And what else, Beth? What would you like to say to anyone who might be going through what you're going through right now?

1:03:10 - (Beth Koenig): Well, you have to remember that it's not exactly something that most people would choose to do, but if you're choosing to do it, your heart's in the right place and stuff and just enjoy the time you have. Focus on quality because your quantity is rapidly decreasing, right, every day. And so focus on quality. Focus on okay, well, I have 10 minutes here or 15 minutes there. Go in and say, hey, I keep books around. Like, we have this one called Stupid History, and it has. All these little antidotes throughout history and stuff. And so I open that up and I'll read a couple of those out loud and we can laugh about them.

1:04:03 - (Beth Koenig): My mom likes to do crosswords, so sometimes we'll do crossword puzzles together, and me and my mom will take turns writing stuff down and dad will spell words for us or come up with the answers. And we like to do that kind of thing. Just focus on the quantity and stuff. And if you do focus on the quality, focus on the quality. See, I get the cute. I get words to have the letters flopped.

1:04:31 - (Bethany Johnson): I get it. What about if you've been doing this for a long time and you're feeling at the end of your rope? Do you have any advice for that? Because some people I mean, this is years and years and gosh, my poor husband, if I get Parkinson soon, it's going to be a long time for him to take care of me. What can we give to people who've been doing this for a long time and they're just feeling at the end of the rope?

1:04:59 - (Beth Koenig): Yeah, it's hard, but when I feel like it's too much or something, I get out. I get out of the house, I take a walk. I make sure that all the safety stuff is done before I leave. Right. And I'm like, I'm out in my car right now doing a podcast. This is how I'm dealing with my mental health. My business partner watches my parents while I go to my EMT classes at night, the emergency medical technician classes. And so I get out of the house and I do my other things.

1:05:37 - (Beth Koenig): We go places when we have the caretakers and stuff. And you just have to kind of figure out how you can build in this lifestyle. And also if your loved one needs certain things, that there might be senior centers. There's daycare programs where seniors can meet and stuff and talk to people. And there's just different programs out there in the community where if you do need a few hours to yourself, you might be able to just drop them off for a few hours. They can have lunch and hang out with their friends, and you can go off and do other things. I mean, that's now opening back up because it was all shut down from COVID of course, but everything's opening back up, and those resources are available.

1:06:25 - (Beth Koenig): If I wanted to, I could drop my mom off at the mall and let her play in the senior center all day. Now I might want to take away because dropping my mom off in a mall with the credit cards is a little dubious.

1:06:45 - (Bethany Johnson): Yeah, that's good, though. Places like that, definitely. Well, that might be me. And in ten years, I'll just be dropped off at the senior center. You don't have to worry about me with the credit cards, though. I'm way too cheap to do that, but I'll be the young one with all the old folks. Hey, guys, I belong here now. That may be me. Well, this was fun, our very first episode.

1:07:13 - (Beth Koenig): Yeah.

1:07:15 - (Bethany Johnson): Did we deep dive enough for you? Thoughts you want to throw out there?

1:07:23 - (Beth Koenig): Well, I think this is a good start because I think people now have more of an idea of where we're coming from.

1:07:32 - (Bethany Johnson): I think we're one autistic person, one ADHD person who love to talk about things that usually are, like taboo or not talked about a lot. That's why we started this thing. I was like, I always want to talk about all this stuff, and I never can. And everyone tells me, you shouldn't talk about that. And then you're like, Me, too. And I'm like, we should talk about it together.

1:07:53 - (Beth Koenig): Yeah, exactly. And I'm sure we'll have plenty of topics to talk about.

1:08:01 - (Bethany Johnson): There's tons of stuff up here that I shouldn't be talking about that I really want to talk about, fascinated by. There's so much stuff that we don't really talk about in this society that I feel like we need to, because people would feel a lot less alone if we did.

1:08:16 - (Beth Koenig): Yeah. So, anyways, I guess we'll leave off with if you're on YouTube, please, like, comment and subscribe. If you're on a podcast app, please leave us a good review or subscribe to the podcast. We can be reached. We'll put our information in the show notes, and we'll try and include some of those resources for you, too.

1:08:39 - (Bethany Johnson): If topics you'd like to bring up, tell us too, and we'll try to deep dive into them.

1:08:47 - (Beth Koenig): Yes. And our website is thedeepdivespodcast.com we have a website.

1:08:54 - (Bethany Johnson): Look at that. Beth is on it.

1:08:56 - (Beth Koenig): Beth is on it. Yeah. I moonlight.

1:09:02 - (Bethany Johnson): Tech. Beth I am not the tech Beth. I don't know which Beth I am, but she's the tech Beth.

1:09:10 - (Beth Koenig): Okay. And with that, we'll sign off with our first episode, and we'll see you guys for episode two.