Lewy Body Dementia Awareness Month w/ Leslie Leach

In this episode, the hosts discuss Lewy Body Dementia Awareness Month and share Leslie's personal journey with her father.  They explore the symptoms, the challenges of navigating the healthcare system, the importance of family support, and the emotional complexities of caregiving and grief. The conversation emphasizes the need for advocacy, understanding the diagnosis process, and the significance of support systems during difficult times. Leslie reflects on her father's legacy and the impact of his illness on their family dynamics, ultimately highlighting the importance of mental health and therapy in coping with loss.

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Joanna Anderson & Sue Nicolaidis

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Chapters

• 0:00 intro
• 7:00 Guest Intro
• 7:51 Bob's diagnosis & Care
• 10:42 Bob's Personality & Relationships
• 15:05 Bob's role in the Family & Moving to Assited Living
• 21:23 Taking driving privileges
• 27:30 Transition to Assisted Living, Long-term Health insurance
• 41:13 Therapy while caregiving

Transcript

Jojo (00:01)
Hi, this is Joanna Anderson and I'm with Sue Nicolaitis and this is You Forgot That I Existed. Hey Sue!

You Forgot (00:09)
Hey, Joanna, what's up?

Jojo (00:11)
Well, long time to see.

You Forgot (00:13)
Y'all, we're going to talk about this next week, but we did a road trip and we've been recording and all kinds of fun time together, but we could share that later. We'll save it for the pod. The other.

Jojo (00:23)
Yeah. Later. Say it for a while, because we have like actual important things to talk about today.

You Forgot (00:32)
Yeah, so October is Lewy Body Dementia Awareness Month and we were lucky enough

to have a guest on. We recorded it a few weeks ago, if not a few months ago at this point. Our friend Leslie was kind enough to join us and tell us about her and her family's journey with Lewy body. Her dad actually was diagnosed with it. And it was so informative. Leslie was the perfect person to have on to talk about this because she's a healthcare professional and

You know, it's like as much as she knew about dealing in the healthcare field, she was still a daughter trying to get answers for her dad and a diagnosis. And it's a really, really, really great list and I loved it.

Jojo (01:21)
it too and how what an advocate she was for her dad. I just loved it.

You Forgot (01:25)
Right. And it's a great example of how to not be afraid to be that advocate and really make doctors answer these questions that you have and just try to get answers for your dad or mom, whatever, your loved one. She's great. I can't wait for everyone to listen. But since it is Lewy Body Dementia Awareness Month, thought we'd talk about it real quick.

These are just facts that I've pulled from the Lewy Body Dementia Association's webpage. That's lbda.org. And it's just 10 things that you should know. Actually, I probably won't even do all 10 because a lot of it, you know, just go look at it. that's the dog. It's the second most common form of degenerative dementia. I didn't really realize that. The only one that's more common is Alzheimer's.

Jojo (02:11)
Shit.

There you go.

You Forgot (02:23)
Yeah, and can have, there's three common presentations. They'll start out with movement disorders, and then we'll start with the cognitive memory disorder. And then lastly, there's some neuropsychiatric symptoms, and that's hallucinations, sleep problems, and behavioral problems. And, you know, Leslie touched on all of that, you know, it was, yeah.

Jojo (02:46)
I know, I know. Her story is so good, so good.

You Forgot (02:51)
And she's easy to listen to. Common symptoms are impaired thinking, fluctuations in cognition, attention or alertness, the movement problems. She brings up that there's a distinct walk. you know, Daniel kind of brought it up with Parkinson's, the shuffling. And there's a lot of times, the Lewy body is lumped into Parkinson's.

but Lewy body has the proteins on the brain. So that's when you're like, gotta get those MRIs and neurology can see that. And it says like the symptoms of Lewy body dementia are treatable, like, cause you're like treating physical symptoms, but it's still really.

Jojo (03:45)
Yeah, putting a bandaid on a bullet hole.

You Forgot (03:50)
Ooh, where'd that come from? Is that a lyric? Is it? What is that? my gosh. How did I not get that? You know, she carries like medical grade wound care with her at all times. Yeah. She does too. She's had people in her apartment stalking all this stuff.

Jojo (03:52)
Band-aids don't fix bullet holes.

She does? her security does? Jesus.

You Forgot (04:19)
Yeah, I mean, there's a lot of this falls under the umbrella of all the other symptoms of dementia and Alzheimer's. But you just really got to get to a physician and start getting monitored. And there can be a quality of life after a diagnosis. So, Lewy Body Dementia Month, Awareness Month, October, go to the website.

get more information and I also want to bring up our Alzheimer walk is coming up fast.

Jojo (04:51)
It's less than a month away. I'm so excited.

You Forgot (04:54)
And if anybody would still like to donate to help out, help us raise money, because we have not met our goal.

Jojo (05:01)
We haven't met our goal people, please. I'm gonna.

You Forgot (05:04)
Which is so embarrassing for me. I feel like I always reach goals. Ha ha ha.

Jojo (05:09)
It's literally embarrassing and I'm gonna put so much guilt and pressure on you and just talk about my sick mom all the time until you help us out here. We need a solution.

You Forgot (05:21)
Y'all can go to You forgot pod on Instagram. The link is in our bio same with our Facebook page. You forgot that I existed and you can go to a ct dot a L z dot org and look up you forgot pod if you want to go that way

Jojo (05:38)
And if you want to hang out with us, you can come join us November 2nd for the actual walk.

You Forgot (05:44)
Because honestly, I think it's just gonna be us and our husbands. Everyone's out of town. Like everyone we talk to is out of town. Where's the, I mean.

Jojo (05:53)
I know it's no we gotta have like some friends can't just be hanging out with Matt and Anthony all the time. No.

You Forgot (06:00)
Again, speaking of, I gotta apologize to listeners for the crap edit on that episode. I did redo it, but I guess that's my karma for getting cocky with the new software editing system and think I could do it because I surely couldn't.

Jojo (06:19)
It's fine. Are you talking about the one with the husbands? Yeah.

You Forgot (06:22)
Yeah, I redid it though. had to redo it because music started playing.

Alright, well I just wanted to touch base with you before we dive into Leslie's episode. So that's all I have for you. anything for me?

Jojo (06:35)
No, that's it. I just hope you guys really enjoy this. She's like, her voice, first of all, is so sultry. So calming.

Honestly, her story is just so compelling. So I hope you guys enjoy it.

You Forgot (06:51)
Okay, well I will talk to you next week. Bye.

Jojo (06:52)
Okay, bye.

You Forgot (07:00)
We have a special guest today, Joanne. I'm so excited. Okay. Let me introduce her. Our guest today has been a nurse for 22 years with a background in neonatal intensive care, pediatric home care, and legal risk management. She has worked at Children's Medical Center here in Dallas for 11 years. In the last five years, she has developed peer support programs to support frontline team members.

She's also responsible for managing a volunteer cohort of over 100 multidisciplinary staff who provide one -on -one peer support following clinical adverse events, codes, and deaths. She's also one of the handlers for the facility dog, Nume Caramel. Along with her husband, Jeff, she has raised two amazing sons, Chris and Cody, who are off living their best lives in Nashville and New York City. She's here today to talk about her father, Bob.

who died of Lewy body dementia in 2021. Please welcome Leslie Leach to the pod. Welcome Leslie. Hi, I'm so happy to be here today. Hi. Hi. Before we get started, I told this story on the pod several times about when my mom got sick in a hospital, we realized the memory or assisted living was not good enough care and she was gonna need to move to memory care.

but the building she was in did not have a great memory care. Leslie was with me when we moved our, mom in the dark of night. It was like eight o 'clock or whatever, but it was definitely after hours and Leslie and our friend Sarah, Leslie got her husband's truck.

And we way back we went in there and took all my mom's furniture out and the ladies were like What are you doing? What are you doing? I was like, we'll deal with this later right now. I need furniture at this new place Wow, I know Yeah, was it was difficult because

it just sort of highlighted the care that can be subpar, you know, for our loved ones. And it was like, get her out. Yeah. And, you know, I think about that in retrospect, I wonder if I mean, should I have just moved her up into the next level and made it like easier on myself? But the new place, I don't know if you remember this, but it was so much nicer than it was like

a home, was like a family environment, like a living room. I don't know. It was just nicer. We toured that facility. The original one or the? The new one or the one that she was in. Yeah. Yeah, we liked it a lot. I can't remember what again. I can't remember. I've got to fill in the gaps of why we chose.

vitality in Alan, but we toured so many places. Yeah. But yeah, I think it's normal too, to look back and go, why shouldn't, should I have done that? You were in survival mode. Yeah. Yeah. That's come up plenty of times because I just, I hardly remember, you know, details and I don't remember like what year she died. The memory of her,

Celebration of life came up on Facebook last week and it was seven years and I was like seven years Wow what yeah, it's a really seven Yeah, I went back in my email and looked at the timeline. I had to piece it all together I hadn't really thought about it. Well, of course, I think about him all the time, but the actual timeline and I was like, whoa Certain things surprised me All right. Let's let's talk about your dad. Okay, can you? Well, first of all, how should we start this because I know he was

your guy, was your everything. So I don't want to just start with the diagnosis and the bad stuff. he was, you want to tell us about your dad a little bit? Yeah, I'll tell you about my dad. He was awesome. He was so charming, so funny. He was sort of the nurturing parent that

I would go to. He was my go -to person for questions, for advice. We had a great relationship. And I do think that influences the way things unfold when they have a diagnosis.

Depending on your relationship with them. It can be unique and layered anyway back to him He he and my mom met in Italy on a blind date. He was a Navy I knew the Navy He was in the Navy. He was in Portofino doctor or whatever and my mom She was born in Ohio and lived in Michigan for a while and at 21 she

applied for the Foreign Service and went to DC and she was

I guess, assigned to Genoa, Italy. And she was like this young thing and so independent. She was like, I'm not gonna get married, I'm not gonna have kids. And the captain that she knew who was in the Navy, he was like, well, I have a group that's gonna be here for a while and I could set you up on two blind dates. One guy's from Detroit, blue collar family, super handsome, super funny.

He described someone else and she just was like, I think I'll go for the Detroit guy. And that was him. grew up and born and raised in Detroit.

He's only child. His dad died in front of him of a heart attack when he was 10. He had a lot of trauma with that, but was raised by a single mom who, she was my person too. So I don't know, he's great. And then they were in love. I literally got engaged three weeks later. She packed up all her stuff and they went back to, I guess back then it was maybe Ohio, I can't remember.

they got married pretty soon after that. Isn't that cute? And honestly they've been in love, they were in love the whole entire time. Until I think he started not to be himself. Am I too loud or too sound? Until he started to not be himself, I think she couldn't be with him.

that way. mean, she showed up for him. She cared for him. But it really was like she was sort of like, I can't do this. He's not.

But she was there. She was there. Hopefully she's not listening. So your mom's still alive? Yes. Yes, she's still alive. And so he's just a great dude. we, let's see, they moved. I was born in Chicago, outside of Chicago, and my brother, who's older, was born in New York. So they got married. They lived in New York, had my brother, and then moved to McHenry, Illinois and had me. And then he got a job offer

Richardson, Texas when I was three. you know, I used to always go to McHenry. Do we talk about that? Yeah. My mom's ex -husband, like they were like best friends after. Yeah. That's where he had a family place and we would go there because he lived and we would, you know, what I know. Nobody's McHenry. Yeah. Nobody ever knows McHenry. No, it's so, no, there's nothing really there. It's just, I just.

We just went there. bizarre. Yeah. So we moved to, you know, Richardson and my mom hated it because she they're just very progressive and very just he was just a great guy. Yeah. And raised my brother and I and pretty, pretty chill childhood. But he was always sort of the one I went to for advice and nurturing and stuff. So, you know, after I got married and

I met my husband in North Texas and we got married. mean, he was close to Jeff as my husband and

He was always just such a big part of our lives. And they lived in Austin. They landed in Austin at some point when I was older. they were like, we're never moving back here. It's too conservative. We're not doing it. So we're going to stay in Austin and retire there. And that was their plan until my dad started to have issues in 2016. So in 2016, how old was he?

So he would do the math for me. He was born in 1940. so he's 66. 66? 76. 76. Has to be 76. Yeah, because he was, I think, 80, 81 when he died. Wow, he was? Mm -hmm. Gosh, I never thought your dad was that old. I know, because he always looked down. I saw him a couple of times here and there. yeah, he was cute.

He's very George Clooney like. He was very cute. You're gonna have to send us a picture. He's so cute.

So how did you get them to move back up here? So he had an episode in 2016, like a neurological event. We don't even know to this day what it was. He had this weird, they were eating dinner out at a restaurant and he just was like, didn't know where he was. And he walked out and my mom followed him and he was like, couldn't speak. So she thought stroke, took him to the heart hospital. Everything was ruled out. Nothing. They found nothing. They did CT scan and

everything. And they found nothing. And so they sent him home. And he seemed okay. And then he had another kind of weird event where he just didn't know where he was. And my brother and I went out there and we spent time with them to just see what was going on. And he seemed okay. He just started to like

forget things and not know where he was or not know how to do things like he used to. Not as sharp. He's a very smart dude, like super smart, which he always said.

if my mental faculties go, God, I don't want to do this. And we always thought my mom was going to have it. My dad and I would have conversations because her parents died of late stage Alzheimer's, both of them, and I played a part in taking care of them. And so all eyes on my mom. And so when this started happening, I was like, no.

So, you know, can't plan for any of that, So, that, what happened was he started to decline and we would have conversations about it. I would go to Austin a lot. We got him a neurologist. I had a fight with a neurologist. I demanded to see the MRI. I was like, you tell me, I was such his advocate.

because they would just be like, eat a Mediterranean diet, know, walk. And he always walked. He was pretty healthy. He was real healthy dude. he did smoke early on and would sneak smoking from my mom. So yeah, there are risk factors there, but he was always so active.

led that healthy life, but the neurologist was like, yeah, Mediterranean diet, this should be okay. I'm like, don't discharge him with an unknown diagnosis. What were those episodes? I looked back at the emails and I saw all these emails that I was typing out to the doctors. Number one, number two, number three. That's sort of how I operate. then, yeah, but you also know how to talk to medical professionals. Yeah. That's another thing being a medical professional

wanting to be in charge of it, knowing the medical terminology, but that meant I was in charge of it. And so I think I leaned on that so much throughout the years that I didn't process the emotional part. I I did, you know, was crying. You're just one foot in front the other, getting business done. Yeah, it was real hard. those, so neurology there in Austin, it was then COVID 2020,

and my mom was holed up with him in their apartment and she had to put bells on the door. I wasn't really sure like what was going on because we couldn't go see them. And then finally Thanksgiving 2020. I'm like come please. And I knew he came downstairs with my mom's pants on. So I was like God. And he couldn't make coffee. His

to make coffee, loved coffee, loved to get up at five and he was the first one up always and he was fumbling and couldn't make coffee. I was like, I'll help you dad and then I was like, crap, you know and that's when they left. I called my mom and said you have to move here. If you want the support you have to move here and she was always like never, we are never.

And she said, yes. Do you think she had been like hiding and, you know, a buffer there for a while and you guys didn't catch up, catch onto things he was doing? Like she didn't call you and go, he's wearing my pants. Like, right. She, I think when you saw it for yourself, when I saw it for myself, I think it was a game changer. think she would say he was like hallucinating a little bit and having really bad dreams and flailing at night, really weird stuff. And then, you know, of course he couldn't drive anymore. He got really upset about that.

But I was like, no, I stepped in and I think that was probably 2018. I was like he cannot drive. That's not fair to other people. So how did what was that process like? You had to take the keys away. It was horrible. He was so angry and he was with it enough to know like something's wrong with me. We don't have a name for it. You know, it's dementia type, but we don't know what type and I said I had to talk to him. We all did but I finally said, dad you you're done

What if Cody or Chris were driving beside you and you You know had a wreck and hurt them or something. You just don't know and it was hard. He was so independent That's right. You're taking away their independence. he always played golf. He would always leave in his car That was a huge thing. That was that was pretty bad. I found an email that I was like He cannot drive everyone has to step in and we just all did and you know, he got depressed

because of that, so that didn't make things better.

So yeah, I think she was not telling me everything, but she was also telling me everything. And then once I saw it, I was like, you have to move. And she goes, well, I'll tell you one thing. We're not moving anywhere that says over whatever age and not anything that insinuates we're old because we're not. And she's very stubborn. And so I go, okay, so not this independent living. That would be great. You'd meet ton of people. No, we want to tour this, this and this anyway. We ended up touring over by city line. It's called the register.

and it was like all 20 year olds.

We moved them in and was it like an apartment? Yes, like like if your son or Kid who's in their 20s. They would live there. It's so cool. That's just my mom I just like to do everything opposite and she just didn't want to be labeled As a whole even though she was in her late 70s. That is kind of amazing She is something else. She's unique

unique and very, very smart, they're very well traveled. They traveled in between that 2016 and 2019. They went on trips. He broke his femur, falling. He fell all the time because his brain was changing and so his balance was changing and the type of dementia he was eventually diagnosed with causes balance issues. So.

They would travel. He was hospitalized one time in Africa and my mom didn't tell me. She accidentally forwarded me the email. Accident? Yeah, it was an accident. She was like, copied me accidentally and I immediately texted her. go, what is this hospital report for dad? And she was like, yeah, about that. I didn't want to tell you. And I was like, so mad. my gosh. Yeah. So your dad, let's talk about.

his type of dementia. Louie body dementia. Took so long to get that diagnosis. That's what I was... Yeah. Because they're like unknown. they're like, that when I said I took the neurology when I was at the appointment and I said, look at the MRI with me. Let's look at it together and you tell me what you're seeing. Because did he have a stroke? I mean, they didn't see any of that. There were some deposits though, white...

deposits, could be a protein buildup and dependent on the type of protein that's the diagnosis. But there's no really way until you look at the, you know, obviously the symptoms and stuff. So he was then it was like vascular dementia, possibly. So let's go with that. And so for a while, because he had trouble finding his words and we thought primary aphasia, vascular dementia. And we're like, OK. And then they moved here and we got a new neurologist. had all my medical contacts

with the best doctors, could not remember their name, so don't ask. But I will if anyone needs them. It was basically THR, Texas Health Resources Presbyterian kind of system. And they sent him to a psychiatrist because they put him on antidepressants and then also a couple of other drugs. And we thought the side effects were...

We thought his behavior, his hallucinations were the side effects of the medication, but really it was really his. And when you have Lewy body, you're sensitive to all of that. So anyway, it wasn't until 2021 because he started to walk rigid. He started to shuffle. It looked very Parkinson. Yeah. That's, isn't there like a Lewy body or Parkinson's Lewy body? There's some look like you have Parkinson's. don't necessarily have it, but Lewy body mirrors some of those symptoms. So he was really rigid.

he shuffled and it was the hallucinations that really the neurologist said we have a diagnosis and now that is Lewy body he he also there's a weird a walk to they like kind of hunch over it's kind of interesting I learned all about it but when my mom's told me it was that I knew

It would go faster. Alzheimer's tends to last a little longer. And Louie Body is just with all the balance issues, with the movement, therefore your propensity for pneumonia is high. So I was like, God, this is not good. What they did tell us too, Louie Body, you are aggressive. You get mad, your personality changes, and I was really afraid that was gonna happen. But I have to say, his kindness, his patience, the way

was never left him. I know. Till the very end. I'm sorry I'm tired. You can. You can. That's fine. That's fine.

Really, that was a blessing, I guess, because we thought, gosh, the aggression. And so when we did move them and found Friends Place, which is a great resource for anyone out there in this area, it's on Nantucket, Campbell. my gosh, they have resources, they had a support group for my mom. What is it? Is it like a nonprofit? I don't know how they make their money. No, they make their money because you pay to do it.

You pick, so half day care. It's a daycare. It is a daycare. And so this was sort of an in -between before assisted living. So he could only do it for a certain amount of time. It was not long. It was probably a month.

They were amazing, but they were like, he has Lewy body. Okay, well, we have to watch that because we've had people with Lewy body who really are aggressive. And I was like, he's so kind. But can we try it? And there were veterans there. So they like honored him. They played games. gosh, I will send you the link for it. I, you have to, because it was sort of a soft place to land before we

to go the assisted living direction but it's not open on weekends it's like you sign up for a five -hour block or a you know eight -hour block and we would drop him off and they would come get him hi dad have a good day and we would call it work yeah we did a lot of that a lot of there's a lot of fibbing involved in dementia

Yeah, well they're not in reality. Mm -hmm. So it's okay to play into that. You have a job to do. Go have a good day and go do it and make friends. That's adorable. Yeah. It's so adorable. He's adorable. Okay, so there must have been something that happened that made you have to move them out of the 20 year old party complex. Yeah.

He, again, with the bell on the door and all that, I think we even got something from Amazon that is like a lot.

or something, he ended up, he wandered a lot, but he got out one night, in middle of the night, my mom woke up and he wasn't there, and that was like, gosh. She found him, thankfully, in the lobby, the cool, hip lobby, sitting on a couch, sweaty, because he had been lapping, just walking and walking and lost and lost. And he kept saying, I saw the sign, that sign that's there,

But I couldn't, I don't know where I am. And he was so frustrated. And that's when we said, okay, let's do this. And that's when we started touring, but we couldn't leave him alone. That's another thing. We couldn't leave him alone. who, my brother's kids, he has three kids who are kind of in the same age range as mine. They were helpful. Everyone chipped in. My brother was great. He's just like, you tell him what to do, he'll do it. He's just that. Your brother? Yeah.

Yeah, super late. We have so many families that like, you just can't get them. Just tell them what you need. tell me what to They're not going to infer what needs to be done. No. They will look at the trash. They will look at like, they just don't. That goes along with just life, not even.

caretaker. You just have to tell them what to do sometimes. exactly. So we would tell a lot of people what to do and they would sit with him while we had to go tour all of these places around here. We ended up landing at Vitality. It was the right fit. And because long -term care insurance was... So that's what you guys had a policy for that. It was... What is it called? John Hancock was the name of the policy. They got it when they were 55.

Thankfully, or we'd be paying 4 ,000 a month. And it covered a good portion of the rent. It covered like 3 ,800. That's amazing. So I don't know why. I don't think they offer that now. I don't think they do either. so much.

But I'm going to start researching that because we've got to do that. We go in Friday to meet that lawyer that was on. Yes. I'll let you know. cannot wait to hear it. Yeah, I want to know too because we just need to do it. It's one of those things you don't want to do. I brought it up to Anthony years ago when I was dealing, because my mom did not have it. My dad did. And I was like, we need to get this. And he was like, kind of like,

can get hit by a bus tomorrow. Like, I don't know, but you know, it's for the kids. mean, I don't see any of them having this money laying around, you know, for us to care for us. one does bankrupt people. know, we talk about that all the time.

So they had that, so that was good. So did your mom stay in the apartment then? Your dad just went to the assisted living? Yeah, that was real hard. was real hard. Because he was confused. He's always connected at the hip with my mom. How long were they married? my gosh, they married in what, 66? So lots of years. But he was like, where are you coming? And we just had to do a lot of reframing, a lot

this is a resort, this is a cruise ship. We've heard someone say it was a cruise ship. One thing, you know, we got him moved in, sort of he wasn't there part of it. So we just got him moved in. We all helped and got it decorated. And then once they were really great about like welcoming him. And so they did and they were like, you will love it here. And here's this. And he was like,

Okay, so you leave, you all leave and I'm here. And I just put like pictures up. I was just, there's no way to make it easy. No. No way to make it easy. And one thing I did do to kind of help.

like make him feel like he had a job or something was give him a wallet, air quotes, and keys that were just not real. And because he had that muscle memory, let me get my wallet, let me get my keys. And so we, and gave him a phone that was not real either. that's actually really smart. Yeah. Yeah. So I'd be like, get your wallet and keys, dad, because they need you out there. They need you out there in that activity and you're going to be, you're going to be a leader and stuff. And so you got this.

So that helped. So cute. And so he would be like, everyone loved him. Everyone. I mean, there are a couple times.

I visited him in the evening and I shouldn't have. knew never again to do that because some of the women would come in and sit in his room and clothes would come off and I'd be like, hello, can we get some assistance? Whoa. Yeah. Well, you hear about that all the time. yeah. mean, and you have different levels of memory loss and people were like, she's been here for nine years. And I was like, no.

It turned out to be a very short time there actually, which I look back on again and say that was a blessing, but at the time I did not think it was. I also got him, he was a dog person too, always had a dog. And I got him this like stuffed dog and I thought this is not gonna work. He's gonna like get out. Don't, you know, like undermine me. Anyway I brought him and I'm like, dad, look what I got you.

I think we named him, and I can't remember what we named him. His other dog was named Jack, so I think I probably led with Jack. I was like, Uncle Lee brought you, and he was like, And he literally was like, this is my dog. I'm like, he can sleep on your bed. I think, you know, he doesn't need to eat a lot. So it was a really great.

I don't know, it kind of helped. Every time I visited him, I'm like, how's Jack? How's he doing? And he'd be like, my God, he's such a good boy. He's silly. I was like, yeah. He's silly. Yeah. Yeah, it was pretty. So you mentioned that he wasn't there that long. Yeah. I mean, and it is unfortunate, obviously, but.

You also didn't have to watch the years and years of the decline. Yeah. He got sick then. Yeah. And I would go almost every day. I couldn't leave his side. I know that differs. And my mom, she couldn't. She had to go once a week, if that. wow. Yeah. So I sort of felt like I was kind of maybe stepping in for her a little and just.

stepping in for everyone I guess because but I just needed to check on him eyes on him it could be a five minute visit it was very close it was easy but you know there would be days that would go by I wouldn't go and then I'd be like I just I don't I'm so scared he's gonna forget about me and I wouldn't ever I mean one time he was

Anna Carol, and that's my niece. And I was like, it's your daughter, your favorite daughter. And he's like, yes, of course. And so I would never let him not forget me. I would just tell him who I was because I didn't want that pain. And you want to give him some dignity too. Yeah, for sure. I didn't want it to be like, he forgot me. That happened. So I would be like, it's your daughter, your favorite. And he'd be like, yeah, of course. Who knows? And so with this

with Alzheimer's and every type of dementia, the part of your brain shuts down that swallows and your digestion and everything. And so I always thought he was at risk for aspiration pneumonia because I just could tell his swallowing was off.

And you know, COVID was kind of there. We moved him in. So they moved in to that apartment March 2021. And then he moved into Vitality August. And then he got pneumonia in November 2021. really wasn't long. It felt long. Yes, I agree. It felt long. Like, I felt like it was long. It was one day I came in for a visit and he was in bed and it was like one o 'clock.

And he had like, you know, diaper on and just like, Dad, what are you doing? And he was burning up. and I was like, can you guys what's happening? Is he sick? Does he have COVID? Like, what's going on? And they we tested him. He does not have COVID. He has a fever, though. And I was like, OK, what are we going to? And they hadn't told you? No. So my mom came up, I called her, she came up and I go, he's man. Look good to me. And then.

You know, ambulance came took him to the ER and so we all were in the ER. My mom and I went to the ER I think it was Presby, Allen. It was really a good hospital Shockingly, you know, I think of the big Baylor's and the big Presby's but this was a really great hospital Never forget the care they gave him ever. He was in the ER

chest x -rays, etc. blood work and he was all bruised up too just because you know they fall and bump and yeah they admitted him.

And I remember the male nurse that was taking care of him once he got to the floor and they got him all settled. They're like, you know, step out of the room, we'll get him settled. And they did such a great job. I was like, you're amazing. Like, thank you so much for what you do. And that nurse was like, what? Because that's what they do. And the next day I came in and he's like, I just have to tell you what you said was.

forget it and that was just me thanking him. It's crazy. Wow. sad that there's so much that we just take it for granted that they're there to take such great care. Yeah well I he was you know doing hygiene and stuff and I knew it had to have been hard.

And then they were getting him up for like, like you mentioned in the podcast or the episode of Shannon, think she was saying you guys were talking about they try to get them better. They try to get them up. The physical therapist came in, they were like getting him up. And I was like, so he's gonna be okay. Yeah. And then he did have a day where he was like,

sitting in the chair and you know we were chatting. My mom was sick so I spent the night there and just brought my stuff. We all kind of my brother and niece would spend the night too. just switched long was he there?

So I think day three. So he was there, I think it was right before Thanksgiving. I think it was the day before, the two days before Thanksgiving. So I don't know what date that was. But kind of like in between of is he getting better? we rehabbing him? What you want him to walk? And in the meantime, these like veteran volunteers came in and they were like, I hear you're a veteran. I just want to give you this. And it was like it was like a, well, I don't remember if it was a bandana or a

shirt or something, or a blanket, was a blanket, they gave him the blanket. And he was like, thank you. And the guy was talking to him and I knew, my dad knew what they were doing. And so they said, we just do this for veterans. I was like, that's so nice. Anyway, I left, I'm like, he's getting better, he's doing well. And my mom came in and she called me and she's like, his O2 sats are going down and he's having a hard time breathing. And so they're gonna put him on oxygen and all of this. And I was like, no, what do they think? And she said,

it's pneumonia. It's like okay. And then Thanksgiving was the next day and we had people in town and I couldn't. That's his favorite holiday. I was like I can't be in this house. I'll be back. I'm going to give dad pumpkin pie thinking he was gonna eat it. And I brought it in too trying to feed him. God, I knew better. He did not eat it. And then they started talking about.

I don't think he's going to turn the corner. And I'm like, yeah, I guess I know that. And then the doctor, I just sort of took over. And the doctor, the attending.

He called me and I said, what would you do if this was your son or your parent or whoever? What would you do? He said, based on everything I'm looking at, would recommend a hospice. And I was like, thank you for being honest. And I will do that. And then I went into task mode. Let's do this hospice. We're getting them on the phone. Can you do it here? They said, yes, we can do it here. Let's do that. And this company came in and took over care. The nurses would still do vitals there.

but they allowed him to be in that room, which was fine. We were all there. We would all come up. I mean, we would, it was, I we'd be watching games. We were watching football. We were just in there. So he had all his grandkids in there. that's amazing. Yeah. And then they brought in the chaplain who my brother really bonded with. They had a, I get really weird when people start telling me about religion. I get all weird.

But I'm like, don't tell me what to do. I believe what I believe. It was weird. But my brother was eating it up and he's like, you know, he really helped my brother and he could tell I was the one who was kind of a little more difficult. But I let that all unfold and he was just good about telling us about the dying process, you know? And there was a lot of things my dad was doing. He used to be a rower, a scholar, you know, in...

Western Michigan when he was on that team. And he was doing that in the bed. He was like rowing. And they're like, this is kind of what they do when they start to go. They start doing a movement to get them somewhere. And that's what he was doing. It crazy. my God. Whoa. He was doing a lot of that. And then he just, so uncomfortable. I was like.

more morphine he He was uncomfortable? He was. I was like, he's not comfortable, I can tell. I need you to order whatever morphine and I need Klinazepam because, and they're like, yes, we will do that. So they did and they got him comfortable. And then that means he's not awake, basically. But I was the one who was like, we need more morphine, we need to go up. And so I held that a lot of guilt thinking I killed him, basically, because I was the one saying,

He's in pain. Yeah, I know it's not rational, but it's what we talk about all the time. You always question, of course, every decision. Yeah, yeah, of course. And so the last time I looked at my brother and said, you order, you call them, you call them, please. I can't do this. And he's like, OK, I'll do that. You know, again, telling him I had to do that with Anthony. I didn't ask Anthony to do. I mean, Anthony was always there, you but like I didn't have him do anything. Administrative it didn't make him call anyone.

or get anything, nothing. And then at the end I was just like, I can't. Like I couldn't make those decisions anymore. You have to make that call and you have to do it all. And did he do it? yeah, mean he had to. couldn't move. yeah. Sort of at that point where I was like, yeah, I can't tell them to up the morphine anymore. And so I was there all the time. I was like, I'm gonna be here. I'm gonna be here when he dies.

wasn't sleeping, I was disheveled. And I finally, it was on the first of December, I finally was like, my mom and I were a little bit bickering a bit. And she's like, just go home and shower and sleep. I'm here. I was like, okay, okay. know, we end up acting like petulant children when we have our parents telling us what to do with. And so I left and you know, went home and

told Jeff I'm just gonna take a nap and he's like yes please do and I did and then like five minutes later he came over and he's like she he died he died mm and then I was like he died like no but he waited for him and my mom to be alone that's what it was I know because that was his person it had to have been and she didn't know what to do she was like I'm gonna leave and I was like stay

They ended up doing, like we all went up there, they ended up doing this service, a veteran service. right there in the hospital. the people, funeral home, all of them, and I made all those decisions before, cremation and all of that. They came and we waited downstairs. They prepared everything.

They said, there's gonna be a, for every veteran we do this, so just wait downstairs. And we're like, okay. And everyone stops and they stand. I have it on video, it's crazy. And they play, you know, taps or something. And they wheel him out with the American flag. I was like, and what's so funny, my dad was like, so unserious in the Navy. He partied all the time. And he joked about never being in combat.

Yeah, I went to Fiji one time or something. I he was like always joking and then he got out. was just, but seeing the, you know, reverie and the honor, was really, it was really overwhelming and really hard, really hard. Even one of the pharmacy

like stopped and stood and looked at Chris and was like, Chris, and it was his classmate. Is this for you? He's like, he's my grandpa and he hugged him. was just, everybody was crying. That's really special. I've never heard of that. Like right after someone passes and that they rally the troops like that and get it done. was, it was bizarre. was very respectful and it's really nice. My dad was also a vet.

I can't remember obviously when he died what they did. I don't think they did that. I've never heard of that. He was at the

I'm saying is weird how everything sort of... They did that at his actual funeral. Yeah. That would have been so cool to have that done in the hospital.

It was really cool. I mean, we didn't expect it. We had to kind of hold my mom up a bit. And it was really hard. But when I looked back on it, it was great. And when they rolled kind of the thing out with the flag and everybody was standing, I had a weird vision of him walking and laughing about it. I saw him. It was weird. And it was for a brief second. And I thought, yeah.

That's him. Yeah, he's laughing because this is funny. It's hilarious because he wouldn't ever the pomp and he'd never wanted that. Yeah, never liked attention and all that so funny. Yeah

That was your little gift. I think so. Mm -hmm. Yeah, had a couple of those when I asked for it. It happens. It's interesting. I totally believe in You do? Totally. I'll tell a story if you want me to. my god, I live for this stuff. Yeah, it's kind of happier. He called me Pumpkin all the time. Like that from day one. That was my name, even as a grown woman. And so I think it was February, so he died in December.

February, so yeah, it February. And Jeff and I went on a walk with our dogs and I just said at beginning of walk, was like, dad, show me something, please. I can't do this. I was really in a bad place. Just in a month or two, if you could just show me a sign, I will be forever grateful. And so we were walking down.

that street right over there anyway the main one anyway it doesn't matter not Hawthorne but right before you get to Hawthorne in a parallel to my street anyway doesn't matter yeah yeah we were walking and Jeff goes why does that house have two pumpkins it's not even October and I was like what did you just say no seriously what did you just say he's like well I just said look there's two pumpkins sitting beside each other

I would. In February. In February. I mean, and it was right after I said it. I didn't mean for it to happen right then. I didn't. I wanted it to happen like, you know, in a couple months. So it was special. love when those things happen. I always just laugh about it. You know, like I don't get super sad, but I'm just like, that was for me. That was, I think so. I believe in it. And it was, it was just, it was really special. I was like, okay.

But yeah, my grief process was so layered and different than my brother. He said he grieved him when he started to have the dementia that he grieved. He went through a grieving process then so that when he died, he didn't feel sad. And I did the opposite. I held off. was in, I mean, you're in a work mode. You were taking care of everything. Not that they weren't there too, but it's just, I mean,

you know, lucky you with all your medical knowledge and everything. You were the person. It was going to land on you no matter what. Yeah. You want me on your side when there's a medical issue. Cause I will ask the questions. I don't really get any fear of anyone who's high up or credentials. don't care. That's good to know. Call me. Yeah. I mean, it's, it is, it's so hard dealing with it because you were just, you just

hit brick walls every time you try as a lay person, know, like you're just, cause you don't know what to say. You're asking what you Googled earlier and then there, you know, like you don't know, but yeah, you had a nice little advantage there. How is your brother now

Did you talk about it? Yeah, I mean he was so great after because I was struggling and the boys were so great. mean Chris would always be like, mom you're grieving and you let yourself grieve. I was like, I taught you boys so well. They're all talking to me about it, comforting me. was very sweet. But my brother, he's like, I feel bad. I feel bad that I'm not going through what you're going through. I was like, don't feel bad. You can't do anything about it. you know, we've been what?

years out, two and a half years, he now will say things like, I'm watching that spin -off of Star Trek because Dad and I used to always watch it. Or he'll be like, I did this for Dad. Because they had a different relationship. It was based on sports mainly. But they really bonded over that. so that's his way. And that's OK. I don't expect him to.

do anything else. Yeah, we all have our different people griefs. So differently. It's okay. There's no right or wrong way. think grief is so, so hard and complex and it hits you unexpectedly in times of you didn't even know you weren't even thinking about them. I've landed on the floor sometimes, like not so much my parents, but like

Yeah, but yeah, it happens. It does. And you're just like, where'd that come from? Yeah. You know what? Has this happened to you guys yet? Like you have like a terrible day. You can't shake it. You don't know what it is. Like you're just like shitty mood, woke up on the wrong side of the bed. And then it turns out to be like a day. Like I've done that on my dad's birthday. I've done that like on, not the day you passed, cause that was like the day after Christmas and I have to be happy then. But, yeah, like his birthday it's happened. What?

happy every year? Well I mean I don't know like my dad I mean it was super sad but it was it wasn't tragic and you know me and my dad were so good like everything was said every you know I felt fine about it whatever but so yeah I don't really even think about it though. Well that's good. I don't I just yeah.

No, I've definitely had that where you're just like, God, what is wrong with me too? Because I'm normally pretty peppy. Like annoyingly so. And then you're like, it's his birthday. Yeah. OK. Yeah. So interesting. Because I do have days like that. I wonder, because what I've been told just through therapy and stuff, your body knows.

your body knows, your brain might not know, but your body sure does know. Because I'll feel that over Thanksgiving or I'll feel that in August, you know. I'm like, what? And I mean, of course, that's when we were, you know, figuring it out. So it's interesting to, well, you just have to honor that. Yeah.

I'm so glad that you talked about therapy too. yeah. I'm a huge advocate. Like everyone get your asses into therapy. No matter if you have healthy parents or not. No, it's true. I think it's hard to find a good one though. That's the struggle. you have to sort of know. I think there was one that I just grew out of and I found a really good one. I have to do it for my job. I'm around death all the time every day. Pediatric death. So it's really

It and it affects me a lot. So I found a therapist who really helps with like You know just getting your body. Okay, you know after a day or in the moment or I mean I do debriefs after a patient has been here, know at the hospital for you know weeks and they bonded and everybody's grieving and we do debrief if they die or We do group sessions or one -to -one support after a code or after you know A lot of nurses are getting beat up right

And so a lot of that happens and from patients and so there's a lot of behavioral health kids mental health issues I mean it is crazy right now and they're stuck in the ER because there's no place to take you know put them and so those are those are hard things all when you Every day all day. mean, of course I have a team and we we debrief with each other and we're really close and I have Caramel and she helps me do my work and that's another thing we we I do that work with her so

They're good things too. We try to do happy things at the hospital, but I have to have therapy or I won't be a sustainable human being. Yeah, and that's good. I didn't realize you all had that kind of support. Yeah, that's nice. Yeah, I created this program. was, I worked with all the attorneys before and I heard about all these events and I was like, who's supporting the people? And it turns out they were looking for someone to create a program for staff support. So I did. I went and did the work and now it's paid off.

really well. have physicians who are doing the work with us and it's good. It's just heavy. Yeah, it's That is heavy. I'm glad someone like you is doing it that needs therapy and debriefing. mean, you could have a robot person in there and that's the person that you're putting in families faces and other co -workers to help.

they're they could tell that you really

Yeah, and you have to walk the walk if you're doing this work. We have another director who runs like a resilience program for health care like burnout and mindfulness and all that and she has to walk the walk. And the other director who's running another program, we're all doing it together. And if I'm telling people you need support outside of this, so let's talk about what you're gonna do for yourself today and if you need other resources, here they

I can't go around not having therapy. Yeah, true. No, I tried that. Didn't work out. Didn't work out.

So all of that work, I I started in 2019, so you can imagine it was going alongside of my dad's journey. And so that's why I was really close with a lot of his caregivers. And I really tried to make, you know, have a relationship with them. And they, but I didn't have to, they fell in love with him. He was easy to fall in love with. But yeah, it was real sad. yeah. He sounds like just a super sweet guy. Bob.

Bobby, how's your mom real quick?

She's in Overture, which is an over 55 independent community. We got her there. We got her there. She's making friends. Shocker, she's like, this is where I should have been. Pretended like she never said the thing. It's okay, I'll let her have that yeah, Don't throw that back in I'm dying on that hill. It's great. I recommend it. I do worry she's starting to lose her words and stuff. And so I'm like,

Bye.

If she's listening, she's super smart, super on the ball. Just kidding. Is overture an independent living? Yeah, over 55, which scares me. I mean, we're not that far away. It kind of sounds amazing. I know when you said that, I was like, shit. Well, it is fun. Jeff and I met all the ladies there and everything. And they're playing cards. They're having mimosas every Saturday. mean, yeah. And they have like pool and tennis courts.

and all the things, right? It's like regular apartment complex. Yeah, yeah, it's great. She's liking it. It's just, you don't know also grief changes relationships. And I think our relationship took a hit. And I think it was because my dad was the buffer and he is gone. And so it's just, so it's very interesting. it like back to like a...

typical mother -daughter relationship type thing? Kind of, yeah. It's real, it's real, it's hard. We're having to kind of do some work on that, which, yeah. She's still driving and stuff? Yeah. So she can come over, you can go over. Okay. yes. She might ditch you guys. Well, and I think we just have

We see her maybe once a week, not all the time, maybe once every other week. She's having us all over Sunday for a dinner, all the kids that are in town. And my kids are never in town. They're gone. My niece is a nephew, and my brother, and Jeff and I, and Jeff's parents. She's rented out the little dining room, and she's making dinner. cute. That's cute. Yeah, that'll be fun. So we're trying to do regular things like that.

And she misses him, you know? Yeah. Real bad. So I think she, you know, having her keep busy, she volunteers at the opera, the Richardson Symphony, something or other, I forget what it's called. The Eisman. Yeah, I was like, I could see it. could too. Thank God I found the word. But yeah, think she just has to keep busy. She travels a lot on her own, like solo.

Which kind of worries us, but she's living her best life. Do you have her on location? I don't. I should. That's good idea. That's a great idea. I'm going to put a little AirTag in her purse. Or find my friends app. Yeah, or do Life360 like I do with my Well, yeah, once my mom started getting her gift, we just put her on location. Because she got lost one time. Yeah, I need to do that. That's a great idea. Just because I'm noticing little things.

And she doesn't have to now. No, that's true. I could just take her phone and... That's what we did. Great idea. I have a story for off camera. mean, off camera. We didn't have a camera today, guys. Thank God. That's okay. I know. I was like, I'm too dirty to have a camera. I Sue. said, is it a camera day? Because I really don't want to wash my hair. So funny. All right, girls. Do you have anything else you want

add or questions, comments? don't think so. I think we covered it. think mainly the long -term care insurance is just worth it, I guess. So we had to start doing that. That's it. think just letting everyone know there's anticipatory grief too while you're going through it, as you go through it with your mom. I think just letting yourself.

do and be whatever that is, not going by some script or someone you heard. giving yourself grace. Yeah, for Well, thank you so much for sharing your story. I was telling you before we hit record, these stories mean so much to so many people, and you're carrying on your dad's legacy of kindness and gracefulness. I think it's a gift, so thank you. Thank you so much for having me.

You're so good. You're so good. But it is true. Like that's always our feedback. Someone will have a similar situation to someone that's been on and you're just like, you would never think that they would relate to this one little weird thing. And it was like, it made their day. Yeah. It's very odd. It's girlfriend chat. Yeah. I know. speaking of girlfriend chat, she's a good one to ask. What are you reading, watching? I'm reading. It's not my usual genre. Fourth wing? Yes.

It's so spicy! take it back. I read fourth wing. Now I'm on iron flame. Okay, is that the second one? Yeah. I gotta finish the first one. Yeah, so do I. I got it. I was all excited. like...

like you said, not my regular genre. And then I get it because I was like, it'll be good for the pool, but it's so big. So it's not like a good pool paperback. know. And I have it on my Kindle, but then I'm to it in the pool. I took it to bed with me two nights ago so I can get back into it. I started like a few chapters and I know I'm going to love it and I know I have to read it because there's another one and another one and I haven't, I haven't been into books, you know, in doing spells. Yay. That's so We're so

influenced by TikTok right now. See, I didn't know it TikTok. She told me. I didn't know. My boss told me, but my boss is younger. So she keeps her So what does that check? She's, I think, she's a baby. I was like, I'm not going to like this. And then I started reading it, and I was like, it's kind of easy to get into, right? Like, it's a good message, too, just with like, Yes.

But I telling myself like, I'm not better than anyone else. If the general public loves this book, I'm going to love it too. my God. I read it ends with us. Or is that it's called? Yeah. All the calling over. I know. Well, my daughter was reading it and she hasn't read a book since like, you know, me and grandpa over there. And so I was so excited that she was like, I'm reading this book. So I mean, I got it immediately because I wanted

Talk to her. read with her. And you know, all the movies coming out. August 9th! I know. Wait, what? With Blake Lively. It ends with us. Is that what it's called? It with Okay, yes. I thought you meant fourth wing. was like, wait. no, not yet. But that is, it has been optioned on the streamer, I think. No? Or a movie. I don't know. You're always up to date on that. I don't know either. I'll try. Yeah. Alright. Everybody out there?

Fourth wing. Is it called fourth wing? Fourth wing. Fourth wing. When I say that, didn't sound right, even when I said it, like, just looking at you. so funny. I'm not surprised. Well, thank you so much for doing this. having me. Thank you. Thank you. And will you send us a picture of your dad so we can put it on the gram? Yeah. I'll send a cute one of him when he was younger, and then one that more recent, like one with his little dog that I bought him or Please do. Yeah. Jack. Yeah. Yeah. Maybe. Maybe. Or.

whoever it was that day. Alright guys, thank you.

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