Episode Transcript
[00:00:02] Speaker A: When you wish upon a star, you will remember the beauty in the star.
And you wish upon a star because you wish on a star.
Cuz that's where the beauty comes from. You.
[00:00:28] Speaker B: And I think we're rolling.
Are you there?
[00:00:33] Speaker C: I am here.
[00:00:35] Speaker B: How are you?
[00:00:36] Speaker C: I'm Karen Edelson. I'm here and I am fine. How are you?
[00:00:40] Speaker B: I'm doing fine, thanks.
And I know this isn't necessarily pertaining to the podcast specifically, although it may. I would just like to commend you on your lovely gathering that you had last night with your yoga peeps.
[00:00:55] Speaker C: Well, now listen, if we include that as part of the podcast, then all of our listeners will be jealous that they weren't also included. And let's face it, they should be. It was a good gathering.
[00:01:05] Speaker B: Well, we are talking today about how caregivers can kind of take care of themselves and cope with what's going on.
And yoga is a big part of that. And you do a great job of embedding that into your life and making sure that you do that on a regular basis. I could do much better myself with that, even though I also love it and have done it for years.
And so kudos to you for doing that and developing. What is another thing that's going to be coming out. Sorry, spoiler alert. Community. Another important thing that's important to keeping your sanity. And that's a great community. You got there for sure.
[00:01:44] Speaker C: Well, thank you. I appreciate it. I will say that I got into yoga when dad was diagnosed because I really needed something that was going to just kind of give me sort of just a mental and physical peace combined. I had always worked out. I'd always, you know, been physically active. I actually avoided yoga for many years because I thought it was an expensive, expensive nap.
That is certainly not true, especially given the kind of yoga that I practice at Studio Citizen Yoga. That is a big part of my life. But I originally started practicing because dad was struggling. And as a result mom was struggling even though she was completely with it. It was just a really quick decline. His health was terrible.
At the time I was married, I was helping to raise my then husband's kids. I was working full time. Our lives were crazy and I needed something that was going to change, just kind of give me a level of calm. And what I didn't realize was that it gave me, in fact, this incredible community in addition to a strong practice that helps me both mentally and physically and I think will help carry me through my later years in a much better way than it would have if I wasn't doing this, but the people who are a part of my life as a result of that practice.
And not only that, the fact that I take what I like to call yocations, that I do a lot of yoga travel, so I go on retreats in different places around the world, and I meet amazing people through those experiences. I feel like it has enhanced my life in so many ways and also really gave me a place to calm myself mentally and physically on that mat when things. Things are challenging. And as we know, they often are, because. Oh, wait for it fits right here. If it's not one thing, that's Joanna.
[00:03:42] Speaker B: Oh, you nailed it.
[00:03:43] Speaker C: I did. Thanks.
[00:03:44] Speaker B: Absolutely. Absolutely. Well, everybody, welcome back to the pod.
That is a wonderful opening. And we're going to do something a little different with this sixth topic that we have. We're going to take today and over the next three episodes, do a deep dive into the experiences of family caregiving. And in particular, how do those of us taking care of our parents or other relatives or friends keep our sanity during the process. We've got three of our close friends, each who have been thrust into this situation in different ways, coming on to share their story. Howard, Alyssa and Jill are doing yeoman's work.
We're so impressed by what they're able to do, and we can't wait to share that with all of you. We'll publish these as separate episodes, but will be three parts of the same topic as always.
First, Karen and I will share our own history with our mom.
[00:04:43] Speaker C: Okay, so I want to talk about your recent trip to Los Angeles, which I was thrilled to have you take.
[00:04:51] Speaker B: Thank you, by the way.
[00:04:52] Speaker C: Yeah, well, you don't have to thank me. This was part of our deal that we knew that you needed to have a life of your own when you were taking on this massive undertaking.
And so you got to go to LA to be part of the bar mitzvah of our cousin, or technically our cousin's son, which I want to say I wanted to go. I thought it would be cool. But you and I actually really can't travel together at the same time unless we do a lot of coordinating because one of us has to be with mom.
And Julie had a prior commitment and even if she didn't, that's a lot for Julie to come from Ann Arbor and stay with mom for the week. And you and I are close and, you know, proximity wise and it. And you know, in other ways, you're my brother and my bud.
But we were really clear that you needed to get out of town. You went back to Asia for the first time. In February, I was at Mom's for almost two weeks. Then this last one, I was at Mom's for about a week. And I just have to say, every time I am at Mom's house, I am reminded of how incredibly challenging it is to be part of that world living in our house. Because the breaks that you have where you really can leave the house are only when caregivers or volunteers are there.
And as a result, it is a process to navigate that schedule.
So knowing that I needed to get to yoga, or that I wanted to work out, or that I needed to come home and check on my house, or I have a tutoring business. And so if I needed to see students in person, I had to fit those into those hours of care. Or if I was tutoring remotely, I had to make sure that mom was set up and okay at home. And it's just so much running around back and forth, constantly looking at my calendar for the day and making sure that if a caregiver is leaving it too, that I'm leaving in ample time to get back to them. It's just a lot of juggling.
Not that I'm complaining. I'm not. I, again, would do it over and over for you to be able to get out of town, but because I don't live there, there's a lot more to it that involves a lot of complicated scheduling in order to make sure that I get to do the things that I need to do or especially the things that I have to do in the case of my other job.
[00:07:15] Speaker B: Yeah, it's definitely a lot of juggling and a lot of management.
And so that comes into play a lot. It's not just the actual taking care of her and being accessible and nearby, but there's just this whole apparatus to manage. And I thought I would just kind of review some of the details of what I do and this schedule so people can get an idea of exactly what my days are like.
So each day we have caregivers.
Again, we're very lucky to have special caregivers who are able to do two hour shifts, because for mom, it's just important that she gets meals and diaper changes and all the other adl showering and all that stuff at the key intervals. And so we have caregivers coming in from 7am to 9am, noon to 2pm and 5 to 7pm so every morning I get up like 15 minutes before they arrive and unlock the door for them. And make sure that mom hasn't had any episodes or anything in the middle of the night. Like we have the cameras there and there's motion sensors that warn if anything's happened. If she were to fall out of bed, which is really. She like slipped out of the bed once and landed on her tush. There was no big deal. But I heard that because my room was right above her.
But thankfully nothing much happens overnight. But I can just see if there's any real movement going on, if there's anything. Sometimes she would get up and be up and walking around before anybody got up. But at least she's contained in a room. So it's not that big of a deal.
But lately not much of that is happening. And so that's the day. And so anytime the caregivers are not there, I'm on. Which doesn't mean that I have to be eyes on her. She's still fairly independent within the house, but I just have to be nearby and then.
So that's a lot. You know, it's a lot of hours. But when you take away the fact that she does sleep 11 or 12 hours a night and there's another six that the caregivers are there, it's manageable on a daily basis, but it is seven days a week. And thankfully within that schedule, I do get breaks not only to go to LA and do other traveling every once in a while, but you're very good about making sure that I go out at night every once in a while. You, you and need to go out.
[00:09:34] Speaker C: At night more, by the way.
[00:09:35] Speaker B: Yeah, you're right. I, I need to do that.
[00:09:37] Speaker C: But, but which, which if anybody hears this and they want to call Andrew and say, let's go out at night, you should do that. I come over. I want you to get out of the house. It's good for you.
[00:09:46] Speaker B: By the way, I'm single, unavailable, so if anybody wants to reach out separately, I'm happy to have a chat. I'll have a coffee with anybody, by the way.
[00:09:53] Speaker C: So you are going to be so busy now that you said that you're.
[00:09:57] Speaker B: Well, let's all.
Let's hope so. Let's hope so.
And so Julie and Karen are very good about giving me at least three hours of their time during the week, usually on the weekend to relieve me. And we've got some other people that come in and out of the house several hours during the week. Our cousin comes over and takes mom out twice a week to go to the gym. She still gets on the bike and walks around and sees for people. So there's other stuff during the week that does give me a break and what I find interesting, and I take your point about needing to get out more, and that's true. But the one thing that I really miss about not having my own place and having lived alone for most of my life is that when I get a break, the assumption is, oh, I'm going to give you a break. You can go out and do something. But, like, for me, what I miss most is, like, being better for worse is being alone in my own home and having that kind of core privacy. So, like, some of my favorite things to have happen is when you take mom to your place and you have a little cooking afternoon, and you guys watch CBS Sunday Morning and those type of things.
And so, granted, I will have to get out more. But I do like that, and I miss that. And that's one thing I notice, is that I'm living with mom, and 90% of the time, she's there.
But even if you're there and cooking with her downstairs at her house, and I'm upstairs in my room, that is real time off. Like, I'm not worried about what's going on with her. I'm not checking the cameras. I'm not having the alerts on. And that is. That is good. The one thing I would say that I feel a little bit bad about is that because these two hours with each shift are my time off, what ends up happening is I don't really eat meals with mom because those are the times that she's eating meals. But that's also the only time that I have to get off. So I think I could do a better job of every once in a while having a meal with her or taking her out for dessert or something like that.
And I have a little guilt about that. But overall, I just realized that that's for me and to keep my sanity, that's something that I have to do.
I'm also trying to do yoga as much as I can. Even if I don't go to the studio with you, I do have the On Demand with Citizen, which does help to do. Even in the house, I. I try to meditate every day, even if it's only five minutes. I find that that really helps a lot.
And in general, I just try to have an attitude of not being too.
What's the word? Agitated or anxious or reacting to things that happen. Like, I'm still in this mode where I've almost. I feel like I've built up. I don't want to jinx it. I'm looking for some wood to knock on. I feel like I've built up this expectation that something pretty big is going to happen, like a big fall or something, and it really just hasn't because we think we took it for granted. Like, as long as you have the care in place and she's being watched and she's not alone, things are pretty much in control now. Is that going to change for sure? I'm still waiting for that to happen, but overall, it's working out pretty well. And honestly, compared to what we're going to hear from our wonderful friends upcoming, my work is pretty easy work. It's a lot to manage. I manage all the caregivers and doing all the schedules and all that stuff and keeping things in order. But the actual work is kind of a joy. And I must say, it's not all hard work. It's something that I'm happy to do at the moment. I was never expecting to do it, but here we are.
[00:13:27] Speaker C: Yeah, that's a great point. And also, I will work on getting her to my house more often. It's been tricky because she doesn't want to leave her house, and so sometimes we'll be.
[00:13:36] Speaker B: I get that. I understand.
[00:13:38] Speaker C: And I almost wonder, even I don't know if she remembers it, but I feel like she kind of stood still, harbors a bit of that trauma of being removed from her house and into assisted living for that 14 months. Because sometimes we'll be sitting at my house and I will have made something, and she's sitting on the couch nearby, and so I have put something in the oven, and she'll be getting up, and I'll say, what are you doing? And she said, oh, I have to go. And she'll kind of get up and move toward the door. And I'm thinking, does she think she's driving herself home? She'll just say, all right, I got to go home now. And obviously I have to distract her. And I. But yes, I was doing a better job of getting her on the weekends when I would have her on my own for the, you know, three hours at a time, we would come to my house. So when I get back from my upcoming trip, I promise that I will do a better job of getting her out of the house. Because you're right, I feel the same way about my house. I love to be alone in my house and feel like it's such a great pleasure. So I get that. But, yes, you're right. In General, we've been fortunate that, again, knock whatever I can knock on.
We've been pretty fortunate that things have gone. We've been very fortunate that things have gone well with her, that we've got a good pace going. And yes, compared to what we're about to discuss with these three special people in our lives, we are extremely, extremely lucky. So fingers crossed it stays that way.
[00:14:58] Speaker B: Yeah, I mean, that. Just hearing that, it sounds so long ago. It was just over a year now where she was in her assisted home. And I understand if she had that trauma because we would regularly take her out of there and to your house. Yes, but not to her own house. And then she would be escorted back to the assisted home after that. And so, yeah, maybe there's some synapses that remember something about that. But so I understand her being home. And again, that wasn't a shout out to please increase the amount of time you take her out. But nonetheless, just an observation.
All right, well, with that, we're going to take a short break, and then when we come back, we're going to talk to Howard, who's going to tell us about his situation. In the meantime, as always, here's mom.
[00:15:54] Speaker A: Everything is coming up.
Rose, you're going to have a lot of stuff.
[00:16:04] Speaker B: Things.
[00:16:07] Speaker A: Everything is coming up to the roses.
And that's the thing you're going to have attend to. You and me and him and her.
[00:16:23] Speaker B: Can edit out anything. So it's amazing.
[00:16:25] Speaker C: Yeah, I mean, I can edit out anything is what Andrew means because I'm the editor and Andrew.
[00:16:32] Speaker B: And we have a live studio audience.
[00:16:33] Speaker C: And we have a live audience, which is really fun.
[00:16:35] Speaker D: You can clap or.
[00:16:36] Speaker C: I mean, Boo Jojo's been part of the live studio audience already, so.
So, yeah, I mean, she's familiar. You are not. Our first interview that we recorded sitting in this spot.
[00:16:50] Speaker D: Perfect.
[00:16:50] Speaker C: Love it. Okay, so I have pressed recording. It does appear that it is recording.
I mean, I'm assuming, right, Andrew, like, do take a look because every time we have to go through, you're just.
[00:17:03] Speaker D: The editor, not the. Oh, so it's video I'm good at.
[00:17:08] Speaker B: She's the expert editor. For sure.
[00:17:09] Speaker D: I look good.
[00:17:10] Speaker C: You look great. But nobody will know because it looks.
[00:17:13] Speaker B: Like it's recording just fine.
And so. All right, so I'm just going to say it's my honor.
It's my honor to welcome one of my good buddies and fraternity brother. Sigma Alpha Mu Sigma Iota, University of Michigan. Go blue. Howard Krugel to the podcast. Howard, how you doing?
[00:17:31] Speaker D: I'm doing great. Shine, nice to see you.
[00:17:33] Speaker B: Nice to see you, too.
[00:17:34] Speaker D: Thank you for hosting me.
[00:17:35] Speaker B: It's my pleasure. Howard is through my whole life, been one of my good buddies.
And he is not only a great father, husband, athlete, sports executive, entrepreneur, human. He's one of the goodest. He's one of the goodest people I know.
[00:17:52] Speaker C: He's the goodest.
[00:17:53] Speaker B: I'm using goodest. I think the audience knows what that means.
[00:17:55] Speaker D: Best intro ever.
[00:17:57] Speaker B: It's not even over yet.
[00:17:58] Speaker D: Oh, sorry.
[00:18:00] Speaker B: And we got to add the drama because Howard has been through some stuff over the past couple years. We wanted to have him on today because he has one of the most unique perspectives on how to care for yourself when caring for an aging loved one.
His mother has recently passed. Rest in peace, Mrs. Krugle. Dad has been moved into an assisted home to help with his challenging condition. And you yourself has been living with a diagnosis of als. And, Howard, I just must say I'm still in awe of your positive spirit and how that seems to carry you through these things as. As well as possible. And first question, how are you doing?
[00:18:36] Speaker D: Oh, thanks, Shine. I'm doing really well. I'm three years into the battle against ALS right now, and I'm going to call the last three years the honeymoon phase.
So I've been blessed with very slow progression. I'm getting great care from University of Michigan ALS clinic, and they're actually amazed at how slowly the disease is presenting itself in me.
But these last couple months, it's getting more significant. It started in my right hand. Now it's in both arms. So I'm about to three months away from not having use of my hands, and it's starting to get into my feet now. So I will have challenges walking coming up, and I'm having a little challenge breathing, but other than that, I'm kicking ass.
[00:19:28] Speaker B: You are kicking ass. Well, you look great.
[00:19:30] Speaker D: Thank you.
[00:19:32] Speaker B: That's evident. And I can only imagine with all this going on, there's something else which is the main thing we want to talk about today is how your dad's doing, how to care for him. Can you tell us a little bit about, like, what his condition is right now and where he's at?
[00:19:47] Speaker D: Yeah. Let me go back and start with both my parents. So my parents, last December, would have been married 60 years.
Amazing love between the two of them. Fantastic parents. And amazingly, starting just coming out of COVID they both in lockstep, started to get dementia.
So I know that that's not a very common thing for both Parents to get sick at the same time.
My mom's progressed faster than my dad's.
So starting in 2023, my father was in the hospital for 10 weeks, had his gallbladder out, got an infection secondary to the surgery, had sepsis, endocarditis, infection went to the brain, and then when he came out of the hospital, he was gone pretty much.
So he surpassed my mom in terms of his mental deterioration. So we hired Cynthia for 24 hours, 70 a week care in their house.
And that continued for 15 months while my mom then passed my dad again and wound up getting sick in the last fall and died last September.
Then we weren't sure what to do with my dad because he was just a shell of who he was.
[00:21:16] Speaker B: And I remember at the time, even at the Shiva you were mentioning, you weren't sure if your dad knew what had happened.
[00:21:21] Speaker D: Yeah. In fact, amazingly, maybe there's lots of blessings that go along with aging parents and dementia. And one of them is that since we lost my mom, my dad has never mentioned her, never asked about her.
He's got pictures of her all over his room. But he's doing really well with that. And I think the dementia is what is helping him through that. Yeah. Because this would have broke his heart.
So we had him in the house with Cynthia and he was doing well, but it's not a great living situation, just being alone with one caregiver. And we were paying for evening care because Cynthia could only do 12 hours a day. So we had someone come in just to sleep with them, but he was sleeping through the night, no problems. So that was a significant financial burden on our family to be paying over $100,000 for care from 8pm to 8am when he's asleep. So we thought both for maybe a little more socialization for him and to save some money, we would try and get him over to Federation Apartments in West Bloomfield.
We had him evaluated for that and he wound up only qualifying for the memory care unit, which is full lockdown, third floor there.
So we moved him in March of this year over there, and again, same thing. Amazingly, he went to the Brown center, which is a daycare facility that Federation Apartments have.
And he'd been going there. Thanks, Joe.
[00:23:18] Speaker B: We have an audience member here.
[00:23:21] Speaker D: Have you been to Brown Center?
[00:23:22] Speaker A: Yeah.
[00:23:23] Speaker D: Awesome.
[00:23:23] Speaker B: She has been.
[00:23:24] Speaker D: So he went to Brown center three days a week. So one of the days that he went to Brown center, we dropped him off at 10 o' clock in the morning. At 3 o', clock, we walked him upstairs to the third floor showed him his new room.
He didn't question it, he didn't fight it. He wasn't anxious or aggravated. We said, you live here now?
And he said, cool in the game.
[00:23:51] Speaker C: That's amazing.
[00:23:52] Speaker B: And so since he's been living there, what kind of work have you been doing on top of, like, what are your duties with him? How much time?
[00:24:00] Speaker D: So as. As I said, there's blessings in people getting older. There's also blessings in me getting sick.
He was having anxiety, and this goes back even to when he came out of the hospital.
Not only was he not my sweet, kind dad once he got sick, but he was dealing with psychosis, hallucinations, anger, verbal abuse, physical abuse.
So when we moved him in there, Cynthia was still helping for the transition all the way through the end of April, beginning of May, she went back to Africa to visit her family.
And he kind of went off the rails and was very violent, both physically and verbally, to the nurses there.
So they were going to boot him. So they gave us a choice of finding care that could help him transition, medicate him and turn him into zombie pops, or he would have to go somewhere else to live.
So I applied for SSDI Social Security Disability Income, which I qualify for because of my ALS. I reduced my role at my company down from 50 hours a week to 15, 16 hours a week.
And I now take care of my dad Monday, Tuesday, Thursday, Friday and Saturday from 7am until 11am or noon.
I get him out of bed, I shower him, I shave him, we use the toilet, I get him dressed, fed his meds into him and comfortable through breakfast so that he's more manageable for the staff over there at Fleischmann. And that's been going amazingly well. He doesn't know who I am, he doesn't know my name, but he knows A, I'm a guy, and I'm bigger than the nice, sweet nurses over at Fleischmann, so he's yet to physically challenge me. And then, B, there's something in him, I think, that knows that I'm his son. And so he is a lot more cooperative with me than he has been with the staff.
And although we asked them to do Wednesday and Sunday because I need two mornings off, they've appreciated that we've made that accommodation for them. And even if he's not as cooperative, those two mornings, they take good care, and he's been a lot better.
[00:26:47] Speaker B: Well, that's pretty amazing, Howard. I mean, that's the heavy lifting of the morning work, as we know, Karen knows I've never done it.
[00:26:54] Speaker C: Yes, the morning is really the most.
[00:26:56] Speaker D: You're right.
That's the game.
[00:26:59] Speaker B: When you first realized you must have not assumed earlier in your life that this is something you'd for sure have to be doing, how did you cope initially with recognizing that that's work that you'd have to do?
[00:27:10] Speaker D: Well, it's interesting.
For sure, my dad was going to pass before my mom. Like in all the conversations our family had.
First of all, Kruger men don't live that long. And secondly, my dad was for sure the less healthy of my two parents. So we never envisioned a time when we were only going to have to take care of my dad and my mom wasn't going to be around to help.
Had my dad passed before my mom, even in her condition, she would be like Joanna and she would still be taking care of us no matter what she was going through. Just the sweetest, kindest, most loving mom ever.
[00:27:52] Speaker B: That's a compliment for you mom.
[00:27:54] Speaker D: So shine. I never thought about what it'd be like to take care of my dad.
With that said, we didn't have a choice.
We couldn't send him home. He wasn't going to move in with one of us. We weren't prepared and we don't have the skills to deal with this on a 24 hours, 7 day a week basis.
So I just said, let's see how it goes. And it's not rocket science. You need lots of patience.
You have to understand an empathy, what they're going through. You have to kind of put yourself outside of your relationship with your father and know that he's really not your father anymore, even though he is, he can't.
The things he does aren't who he was.
So you're just trying to honor him the best you can, make him as comfortable as he can.
Because the memory care unit on any facility, no matter how great it is, is a tough place for patients to be.
It's the end of the road, really. And then you're just. You try and make them, you try and decrease the stress on their experience the most you can.
So it's a little harder for me because I don't have hands. So compression sucks, right? To get the vasculature to go up and the ankles not to swell because the diabetes, it takes us a good long time to get those on. And sometimes he's even funny if we do it wrong or if it takes too long or if he gets aggravated while we're trying to put his socks on. Once I Get him on, go wash my hands. He takes them off and throws them at me. And I say, all right, dad, we'll try again. And we just, we start over.
[00:30:08] Speaker C: Do you, I mean, it must be. Listen, you are a light hearted guy with a great sense of humor. Are you able to keep your cool when all of this is going?
[00:30:18] Speaker D: Yeah, no, no, I, I laugh at him.
[00:30:21] Speaker C: That's amazing.
[00:30:22] Speaker D: He's funny, he's goofy.
I don't get mad or frustrated. I parented the same way. I never yelled at my children.
I always just tried to take life as light hearted as I could.
I realized very young in my life that when I get upset, it doesn't really help the situation, it doesn't help a relationship, it doesn't help a friendship, it doesn't help in a work environment.
And then I just feel like crap for a couple days afterwards. So it's not worth it. I would rather just try and think of things logically and with humor and just put my head down and get done what needs to get done.
[00:31:13] Speaker C: That's impressive. I remember there would be times when I would be with my mom and I would get frustrated about something and that would be the end of the visit and I would leave and I would just be gut wrenched over it that I can't believe that this situation ended this way, this conversation ended this way. And then I will say like again, the beauty of this circumstance is that when I sometimes, because I live close, I would actually come back to just try to like give that a better ending, that particular visit. And she would have no recollection that that had happened. And I thought, yeah, I guess there are some real small blessings in this that I could be gut wrenched and feeling terrible over it. And she was. As if this was a brand new day.
[00:31:53] Speaker D: Yeah, I mean my whole experience with both my parents and the dementia is because we've got, our family's very loved in the community here and we've got a great support system. And everyone keeps saying to me, I'm so sorry you're going through this. I'm so sorry. And it's, it's the empathetic sorry. Right? It's not the, they can't do anything about us. Sorry. But my, my reaction to that is that it's, it's not hard on my, it wasn't hard on my mom, it's not hard on my dad, it's not hard on Joanna. It's, it's hard for us, their family, to watch them go through this and, and to deteriorate like this, but they're mostly at peace.
The other thing that I would say for families that are going through this, you have to realize that the pride factor in elderly people is significant.
And the biggest problems that we're still having with my dad, because he doesn't have agency anymore, he can't decide that he wants to do something. You have to direct him around all day long.
He would lie in bed all day if you didn't say, we're getting out of bed. He would sit at breakfast all day if you didn't say, breakfast is over.
We're going to go into the TV room right now. We're going to go for programming.
But if things go wrong and he gets embarrassed, it's amazing how powerful that sense of pride and that how they try and process and react to the embarrassment. And that's still when we have problems, is if something. If he has an accident and he becomes embarrassed that he had an accident and they're trying to get him cleaned up, it's a mess.
He's off the rails, and that's when we have the problem.
[00:33:58] Speaker B: That's one of the things that I learned early on, too, is this dignity piece.
And thankfully, the people who we were working with in the beginning were very good at reminding us that there's still a person there, you know, and they have a personality, and they may seem different, but they still hear you, they still understand, they still have instincts about the activities of daily living and want to be in control of those things. And you really have to do be reminded that you have to be compassionate and remind them that, you know, dignity is important and to help them retain as much of that as possible.
[00:34:31] Speaker D: Yeah, it's amazing. The two things that I think are deepest in his soul are the dignity and the pride and music. Like, it's amazing what.
What he can do with music.
[00:34:45] Speaker B: Music's your favorite, right?
[00:34:46] Speaker D: Yeah, he. He sings all day long, every day. Put music on. He knows all the songs. I take him to religious services every Saturday morning over at Cheresetic, and it's the best two hours of the week.
He'll stand up when they tell him to stand up, sits down when they tell him to sit down, and he knows every single word of the morning service.
And all the people that he was friends with that are still congregants there, they hate to see him in the mental and physical condition that he's in, but they love seeing him Saturday mornings over at Sheratzadduck and watching him sing the songs and know the prayers and.
[00:35:33] Speaker B: Physically he's still in pretty decent shape.
[00:35:35] Speaker D: Yeah, yeah, he's. I mean, he's. He's lost a bunch of weight, but, yeah, physically, his heart's good, his cholesterol is good, his lungs are good, and his musculature is good. It's really just his brain that's gone.
[00:35:55] Speaker B: And what do you. So have you been focused at all on?
I mean, my sisters are very good at reminding me that I have to take breaks and make time for myself and get out of the house. And do you remind yourself or your brothers help you remind yourself that you need a break or what do you do to kind of help cope with the situation?
[00:36:14] Speaker D: Yeah. So, I mean, just like your family, Andrew, we're really lucky. I've got two brothers that live in Detroit, which is rare for families that grew up in Detroit. The kids seem to disperse around the country.
Right.
[00:36:32] Speaker C: China or around the continent.
[00:36:34] Speaker B: The world.
[00:36:35] Speaker D: The world and all that. But we've all settled in Detroit, and we have a very close family. And amazingly for three brothers, we all get along. And it's perfect that there's an odd number because if we don't, majority win. So there's no arguing or bitterness about decisions from my parents.
A quick example was when it was time for my mom to go on hospice and end of life care and the morphine to help her find peace. I was ready and my brothers weren't.
So I waited. And then a week went by, and then one of them was ready. Two to one, the other way. We moved forward, but I wasn't. I didn't try. And they had to come to it at their own pace. And I didn't try and argue with them, but.
So we've got other people that help. Noah goes over there. It's my younger brother. He goes over there a couple days a week. Joel goes over there. My older brother, a couple days a week. He. And we have the Fleischmann staff who we pay them.
[00:37:42] Speaker B: Right.
[00:37:43] Speaker D: That's paid care. Right. They're supposed to be. There's not supposed to be a me or Joel or Noah helping. They're supposed to be their care, and that's what they're responsible for.
[00:37:54] Speaker C: And so is the circumstances of your dad's sort of, I guess, aggressive behavior that caused this.
[00:38:02] Speaker D: Correct.
[00:38:03] Speaker C: And this was the solution.
[00:38:04] Speaker D: Correct. I mean, the other choice was Zombie Pops.
[00:38:08] Speaker C: Yeah.
[00:38:08] Speaker D: With Ativan, and we. We didn't want to do that.
[00:38:11] Speaker C: And you're happy with this decision despite the fact that it's hard on you?
[00:38:15] Speaker D: Oh, it's. It's the best hours of my day. It's such a blessing that I get to do this and spend this time with him. And it's. It's even a blessing on my health circumstances that I was able to carve out this time to be able to do this. It's great. I love it. And I don't just help him. There's 14 people on the fourth floor, and I'm friends with all the residents there, and I hang out with them and I help the staff when I can. It's really a blast.
[00:38:51] Speaker B: As I said, one of the goodest people I know.
[00:38:54] Speaker C: I would agree.
[00:38:55] Speaker D: So, Andrew, to your question. I don't.
It. It doesn't.
I'm not exhausted. I've got time for myself because once I'm done with that, I go, I get professional challenge still with my company.
And then it's. I.
I have not needed a break.
[00:39:16] Speaker B: Well, on the. The fact that you enjoy the work and feel blessed to be able to do it is a blessing in itself. You know, a lot of people don't. Don't feel like that.
So let's get you out of here on this. If you're giving any advice to people who are approaching this situation, anything they might not be looking out for, that they should prepare for.
[00:39:39] Speaker D: I would say try your best to mitigate the accidents.
So like, Andrew, I know I called you when he was leaking through the diaper, right? We need a better diaper.
Right. Because a better diaper makes a huge difference.
[00:39:57] Speaker C: It does.
[00:39:58] Speaker D: Now we do double diapers. Right? So. So a first diaper and then a second diaper. So whatever you can do to control the environment so that they're not getting embarrassed or not losing their dignity or not getting their pride hurt is huge, because that's when things can get more difficult. And then I would also say be intimately involved in their medicine regimen and make sure that they're getting their meds, whether you have to give them their meds if they're in a home situation, or you have to make sure that the care facility is giving them their meds, because the care facilities are all understaffed.
And with 14 people, if they go to give your loved one their meds and he tells them, get away from me, I'm not taking that. And then they try again, say, time to take your meds, and he takes a swing, tries to knock the meds off the tray, they're done, right. They're not trying a third time. The meds go in the garbage, and then you're on A cycle of. Not only are they hallucinating or delusional or aggravated, but now they don't feel well because they didn't get their blood pressure meds or their heart meds or their cholesterol meds. So just like, raising children, being regimental in their day really helps.
And trying to mitigate when they could get embarrassed or feel ashamed, and that really helps.
[00:41:46] Speaker C: Yeah. Amazing.
Howard, you're an incredible human being. The goodest. Coming from an English teacher is really hard for me to say, but true to believe, and we're grateful for your time, and we're grateful for all you're doing for your dad. And.
Sorry, I'm choked up, but I. I think that you will always be grateful for this time you have with him. And I know that somewhere he knows that you're doing this for him. And I think it's delightful and wonderful, and we thank you for.
[00:42:17] Speaker D: Thanks, Special K. This was fun.
[00:42:19] Speaker B: I love you, buddy. Thank you so much.
[00:42:21] Speaker D: Yeah.
Awesome. Thanks. All right.
[00:42:24] Speaker C: Okay. Mom. Mom, Would you like parting words for us?
[00:42:26] Speaker B: I'd like to say. Mom, you want to say we'll be right back?
[00:42:30] Speaker A: We will be right back.
[00:42:31] Speaker B: Okay.
[00:42:32] Speaker D: Good job, Joanna.
[00:42:41] Speaker A: Sunshine, lollipops and rainbows they pretty trim over the rainbows Skies are blue.
[00:43:05] Speaker D: And.
[00:43:06] Speaker A: The dreams that we use Always will be here.
[00:43:15] Speaker B: And we are back wow. What an incredible discussion with Howard, who is just such an incredible person. I'm amazed at his positive attitude and the fact that, I mean, he. He says he feels blessed to be able to do this work for his dad. I mean, I just like. And of course I believe him. He's obviously telling the truth. He's not just sugarcoating it. I mean, it takes a really special person to feel that. And I'm just thinking maybe Howard's story can inspire people to try and have a more helpful outlook in these tough times, which is very difficult to do.
I mean, he's. He's really able to put things in the proper light.
While he has, to put it mildly, a lot going on.
I mean, I gotta believe there's. There's definitely something special in his DNA. I mean, I've known him forever, so I know that there is something special. He's just a truly good person, and there's something special in his DNA that helps him approach things the way he does.
I mean, this is a guy, by the way, who signs his text, you know, so, like, I agree.
And not just with people he doesn't know. Like, within our good friends group chat, he'll sign his text and when I first saw him do this, I was like, you know, Howard, we know it's from you, right? I mean, there's like technology has figured that out and of course he knows, but it's, you know, it's just this personal touch that he does, which is technically unnecessary, but very old school friendly. And I've come to love seeing his Dash HK signature.
[00:44:49] Speaker C: So funny. I feel the same way. In fact, I didn't realize he did that with everybody because, you know, I know Howard very well over the last few years, but certainly not lifelong like you have. We share a birthday, we've celebrated many birthdays, shared many cakes together. I love that he calls me special Gay.
I love that he calls you Shine, your nickname with your friend.
But yes, that is such a sweet piece that people don't do that because you don't have to. And I love that he signs that it's such a. It's a just a tiny piece of his personality that is so larger than life and warm and loving and incredible.
[00:45:30] Speaker B: Yeah. I mean, he's genuinely. And he's generally a kind hearted soul. But what's interesting, he also mentioned that he made a conscious decision when he was younger and encountered some stressful times to not let that stuff get a hold of him, to put it in its proper perspective and move on. And so that is behavior that can be practiced and learned, and we could all probably do a little bit more of that. If Howard can do that in the midst of all he has going on, we can surely make an effort to do the same.
[00:46:02] Speaker C: Yeah. I also just want to add in that I thought there was such a sweetness that first of all, Howard came to our mom's house to do the interview of a house he's probably been coming to, I don't know, since you guys were kids.
And I love that when he walked in the door, he immediately went over and greeted mom, who was sitting in her favorite chair in the living room. And then while we were getting ready to record, she pops herself up in her walker and came and sat down with us. So she was sitting with us during the entire interview and just sort of nodding and smiling. And she seemed like she was glued to his story, even though I didn't know if she really necessarily understood it. She loves to be part of the fray of everything going on. And, you know, he talked about the blessings that his dad doesn't know what's happening around him, which feels like a blessing when you're in these circumstances. And I often feel that way about mom. That she just seems so blissfully, joyfully happy.
And she doesn't. I don't feel like she's, you know, mourning losses in her lives or sad about situations that are going on. Even, you know, mom used to be so deeply, intensely involved in politics, and I almost feel like there's a piece of it that. All right, well, she has no idea what the craziness is going on right now. And in some ways, I look at her blissful example existence and think, okay, silver lining. Silver lining, right. Howard really does a beautiful job of reminding us that we are surrounding these people who have raised us with loving care that they deserve. And I, I just cannot get over his story and his attitude. And it is really a true indication of who he is and has always been.
[00:47:46] Speaker B: Indeed.
Indeed.
[00:47:49] Speaker C: On that note, I want to say this because we left this off the last episode.
[00:47:52] Speaker B: Yeah, go for it.
[00:47:55] Speaker C: Our purpose of this podcast is to share these stories because they're poignant, they're meaningful. But I also feel like we have a world of listeners, I hope, who have their own stories to share or questions to ask. We've had some follow up questions come in that we'll address that I think were great. But we want people to know that our goal is not just to interview people we know or to chat with people we know, but to talk to people who are listening, who might say, oh, I want to tell you about this experience I have, or I want to ask you about this, or could you provide advice from an expert? So I want to leave in our email address because I think it's really important. If it's not onemail.com I think the goal is for us to have a community and you and I both know how important that community is and we hope we'll hear from you.
[00:48:41] Speaker B: And I'd also just like to mention that we have had some discussion about when we give you the email address, if we need to specify whether that's the numeral one or the word one, I admittedly have come out on the side of we don't need to because you'll figure that out. But you know what? Maybe it is a good idea. So, Karen, why don't you share which one is it in that email?
[00:49:05] Speaker C: Well, funny you should ask.
It's both because I grabbed up both those Gmails.
So you can either use the word one o N e, not W o n o n e or the numeral one. Either way, we're going to get it. I check the email often and we're excited to watch our inbox fill up.
[00:49:24] Speaker B: Sounds great. All right, well, that's all for this one. We'll be on for parts two and three before too long. And for now, here's mom to play. Play us out.
[00:50:02] Speaker A: And you are only going to be and.
[00:50:16] Speaker D: You, Sam.
