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Summary
In this episode of CareLab, Lori Williams, owner of Lori Williams Senior Services, and host of the "Aging in Style" podcast, shares her personal journey as a caregiver. She discusses the emotional challenges and lessons learned while caring for her husband, Mark, after he suffered a series of strokes on Christmas Day, 2022. Lori’s story highlights the importance of caregiving, stroke prevention, and the power of sharing experiences to help others.
Key Takeaways
- Personal Caregiving Journey: Lori shares the emotional and practical challenges she faced as a caregiver for her husband after his strokes.
- Importance of Stroke Awareness: Strokes can be preventable in many cases, and Lori emphasizes the importance of recognizing the signs early.
- Sharing Experiences: Lori's decision to write a book and share her story was driven by the desire to help others feel less alone in their caregiving journeys.
- Practical Advice: Lori provides insights into what she learned about navigating the healthcare system during a crisis.
- Emotional Support: The episode underlines the importance of emotional support for caregivers, acknowledging the complex feelings that arise during such challenging times.
Transcript
Emilia Bourland
Good morning, welcome to Care Lab.
Brandy Archie
Welcome to Care Lab. It's Care Lab Day. I'm so excited to be here with you all.
Emilia Bourland
Yes, Care Lab Day is the best day. And today we have a really exciting guest here with us. So we have Lori Williams of Lori Williams Senior Services. And she's here with us today to tell us her own caregiving story and share some of the important lessons that she's learned. But first, let me tell you a little bit about her and where you can find more about her. So as I said, she's the owner of a senior placement service, Lori Williams Senior Services.
She's also the host of the podcast, Aging in Style with Lori Williams. And as I said, she's recently added the title of author to her bio. She just published her first book, Surrounded by Love, One Family's Journey Through Stroke Recovery. In the book, she shares what she's learned as an advocate and caregiver for her husband, Mark, who had a series of strokes on Christmas Day, 2022. And we are so happy that Lori is here with us today. Thank you so much, Lori. Welcome to CareLab.
Brandy Archie
Welcome.
Lori Williams
Thank you. Thank you so much for having me on. I'm excited to be here.
Brandy Archie
Okay, now don't get too excited yet because we gotta, you gotta save, reserve your judgment for after we get done. But we gotta start with a icebreaker question so we get to know you a little bit better. It's not too controversial this time, but it might make you think. So here's a question, and because we're rude, you have to go first. What?
Lori Williams
Okay.
Emilia Bourland
Hahaha!
Emilia Bourland
Right. Yeah.
Lori Williams
Okay.
Lori Williams
Okay.
Lori Williams
Hahaha!
Emilia Bourland
Hahaha
Brandy Archie
Is there, because you have a book coming out, and so I wanted to know from everybody, is there a book from your childhood that you still enjoy to this day?
Lori Williams
yes, there actually is. there was a book and I'm trying to think of the name of it though. it was about, what is it? Shoot. I can't think of the name of it, but the book was about a family that adopted children of all different ethnicities. And I loved this book. Like in, I think it was fourth grade. I started reading it and,
Ended up adopting both my children who one is from Ecuador and one is from Korea. And so I told my daughter about the book and I described it to her when she was in about fourth grade, I guess. And she went to the librarian at school and the librarian knew the books. I couldn't think of the name. Like I can't think of it right now. And so, she, she immediately knew the book and I ended up ordering it and my daughter and I read it through a few times throughout her childhood. She's 21 now, but.
Brandy Archie
You
Lori Williams
I still have the book, but I just cannot think of the name of it right now. But yes, that is a book I still enjoy.
Emilia Bourland
It's because we're rude and we put you on the spot. That's 100 % why. Okay, so mine is not as cool and meaningful as yours is. This is gonna sound really weird. So this is like a little, little kid book, like one that I remember my mom reading to me when I was really, really little. And I actually like kept it and I read it to my own kids. And I cannot tell you.
Brandy Archie
That's cool.
Lori Williams
Yes, that's it.
Lori Williams
Hahaha!
Lori Williams
Mm
Lori Williams
Mm
Emilia Bourland
why it is that I love this book. It's like so simple, but it's there's something very comforting about it. Okay, it's called Thumpity Thump Get Stressed. It is! Do you know it? Do you know Thumpity Thump?
Brandy Archie
Mm
Lori Williams
Yes.
Brandy Archie
Is it about a rabbit? huh. I think I I don't know. I'm pretty sure I Thumbly Thump. I don't know if I know that book particularly.
Emilia Bourland
Okay, you know what, and I don't even know, there probably was like a series of books with the character Thumpity Thump, but the only one that I had was Thumpity Thump gets dressed. And like, he basically just, he gets up in the morning and he wants to do this activity, gets dressed for it, and he goes outside and like, the weather's not appropriate for that activity. So then he goes back inside and he changes and he goes back out again, and then the weather's changed again. And then he goes inside and changes and then like, the weather changes again.
Lori Williams
Yeah
Brandy Archie
I think so.
Emilia Bourland
And then finally, at the end of the day, he's dressed right and he gets to go sledding. But like I said, it's the simplest little kid book. And I can't tell you why. But immediately when you asked that question, I was like, Thumbity Thump gets dressed. I love that book.
Brandy Archie
You
Lori Williams
Yeah
Brandy Archie
That book led you into occupational therapy. That should be your new story about why you became an OT. Because of all the dressing.
Emilia Bourland
Because of all the dressing. Maybe, Yeah. A precursor to my profession. Yeah, for sure. Okay, what's yours?
Lori Williams
There you go! Yes! It is meaningful, yes!
Brandy Archie
That's so funny.
Okay, so mine is recent because we were just at the library and they won some books for their, my kids won some books for their summer reading program. And so one of the books that was sitting there is called Miss Nelson is Missing. And it's this book about a very nice teacher whose class is running over her. And so she decides nobody's listening to me. And so she comes back as like a witch basically.
and is like a super mean teacher. And then...
Lori Williams
Emilia Bourland
What's her name? I know what book you're talking about, but I can't remember the... No, but what's the name of the mean teacher? I can't remember. Okay.
Brandy Archie
It's called Miss Nelson is Missing.
Brandy Archie
now I can't remember either. Even though I just read it to the kids the other day. But the mean teacher is her because she dressed up and the kids spend the whole book trying to find their teacher. And then of course the teacher comes back and then they all act good. And I don't remember why I liked that book so much when I was a kid. When I saw it as an option for the book that they get to win, I picked it for the two year old since she doesn't get to pick. And I read it to the kids the other day and they picked up
Emilia Bourland
Mm
Brandy Archie
in advance that Miss Nelson was the witch. And I was like, you guys are so smart. And they loved the book so much as they listened and sat and listened to the book. And they weren't playing around as much as they usually do. So I was like, that's a win from the past brought to the present.
Lori Williams
you
Lori Williams
That is a win, yes.
Emilia Bourland
You know, I think like the thing that's interesting about all three of our picks is it's something that we ended up sharing with our own kids. And I think that's what a great book from your childhood does. It's something that you like look forward to sharing with your own children. And it makes it so much. I think that reading with your kids is so special. It's one of like the most, even though my kids are older now, they don't really need, they don't need me to read to them. We still do like family reading time.
Lori Williams
Mm -hmm.
Brandy Archie
Mm
Lori Williams
Mm
Lori Williams
Yeah.
Lori Williams
Mm
Brandy Archie
Mm -hmm.
Emilia Bourland
where we will all have our own like books together and we'll just like all snuggle up in bed together and be reading our own individual book. And it's the most special fun time. It's just so nice to share like those kinds of those kinds of things from your own childhood with your kids.
Lori Williams
Yeah.
Brandy Archie
And I think that's like one of the most powerful things about books though, is that they don't get old for the most part. Like unless it's written about a current event, they don't get old. And so I have had so much fun with my kids just like seeing books that I remember and then reading to them and be like, read this book when I was a kid. And do know this book is old enough that your grandma read this when she was a kid? Cause we got some like really old books that still are in circulation. And so I also think that's why books are powerful. So.
Lori Williams
Agreed.
Emilia Bourland
Mm -mm.
Lori Williams
Mm
Lori Williams
Yeah.
Brandy Archie
Lori, tell me why you felt like it was important to put your story into book format. Because there's lots of ways that you could have told your story.
Lori Williams
Mm -hmm. Yeah.
Emilia Bourland
Wait, hold on, can I just say that was the best segue I've ever heard, Brandy. Best, that was the best. I had to, okay, sorry. Go ahead, Lori. Now you can answer the question now that I've messed up everyone's
Brandy Archie
But then you just had to kill it by d
Lori Williams
Yes, I agree that was an excellent segue. very good. So I had before Mark had his stroke, I was wanting to write a book. I've always wanted to write a book since I was a kid. And I had was had started on a book about senior living. And so when he had his stroke,
Brandy Archie
You
Brandy Archie
I'm working on my hosting skills.
Emilia Bourland
Yeah, yeah.
Lori Williams
I'm just a journaler as it is. And so when I was in, I mean, the first night in ICU, I didn't sleep for like three days. So I was taking notes on my phone, on my iPhone. So just in the notes section, like how I was feeling, things I heard, and I just kept thinking about seniors that I work with. Like, and I was thinking, what if I were 85 in this situation and no family? Cause we have no family locally.
And, know, I was just like, I don't know how you would cope. mean, I, it was overwhelming for me, even with the background in senior living and healthcare and kind of knowing what was coming next, but it was still overwhelming. So I was just taking notes on everything. And then with my podcast, I think I took like a couple of weeks off, but when I came back, I was still processing through all this. So a lot of my podcast.
We're just in real time, like through the journey for that whole year, I would talk about different things. And then I just thought, you I think this is really valuable information to share with other people. So they know that they're not alone, you know, with being a caregiver, the feelings that come up that you think. I probably shouldn't say to anyone, you know, I put in the book, those things, because I think.
I think it's valid for people to know that their feelings are, you everyone else is having the same feelings, they're not alone. And then just also sharing what I learned about strokes, because to know that they're 70 to 80 % of the time preventable, that's a big thing, because I don't want anyone to go through this. If you don't have to, if you can prevent having a stroke, that's the best way to go.
Brandy Archie
Mm -hmm.
Emilia Bourland
So would you tell us, and obviously I shared a little bit at the beginning of the podcast, that your husband had a stroke on Christmas Day 2022. The other day I got to hear Lori speak in person about this and it's such like a moving and compelling story. Would you share that as much as you're comfortable with sharing your story here?
Lori Williams
Mm
Lori Williams
Mm -hmm. Christmas time.
Lori Williams
Sure. So Christmas day, everything was like totally normal, like a boring Christmas actually, because we, was just our little family. We were going to go out of town and then we didn't because we had a new puppy. And so it was just too much. So we just stayed home and dinner was late. I just feel like everything kind of came together as it was meant to, I guess.
Dinner was kind of late getting done, so everything wasn't ready until seven o 'clock. And so I called everyone into the kitchen. Normally we would sit at the table, Mark would say the blessing. And that day, because it was so late, we were all so hungry, we just had everything on the island and we were just gonna do buffet style. And so I just said to Mark, I said, can you say the blessing? And he went to say it and nothing came out. And he had this weird look on his face and...
And he said, you say it. And I was like, okay, something's wrong. And, know, for whatever reason, I remember there was a commercial years ago that was called fast and it was all about strokes. And I, that just stuck in my head. I'm like, I may need this one day. And I looked at him and I said, say something and he, whatever he said, it made no sense. And so I immediately knew he's having a stroke. And I said, you're having a stroke.
Brandy Archie
Mm -hmm.
Lori Williams
They told my son who was 26 at the time, my kids were 26 and 19. And I said, stand with dad. What I should have done was called 911, but my whole thought was fast. I've got to get him to the emergency room fast. And so I just threw on my shoes. was freezing cold out. I didn't put a jacket on or anything. Got it. He could walk still. And he got in the car. He buckled the seatbelt and I.
Brandy Archie
Yeah.
Lori Williams
called my friend Carol who had worked in hospice at the time and I said, which hospital do I go to? And she said, go to the closest. So I went to the closest, which was just a few minutes away, but it wasn't a hospital that did Nures. So this is where I kind of messed up because I should have called 911 and I've learned since that they take them to the right hospital and while they're assessing them in your house, they're in contact with the hospital, they're getting ready to
take someone who's had a stroke. you know, instead I feel like I waste it time with that. Just not knowing which is, I mean, I'm not beating myself up or anything, but I just want to share. Yeah.
Emilia Bourland
Yeah, I was going to say, don't be so, I mean, I think that you did what lots of people do. I also think it's so, like, it's really wonderful of you to share that with folks so that other people who, if they find themselves in that situation, they'll know, okay, I do need to call 911. I shouldn't try to do this on my own. Yeah.
Lori Williams
Mm -hmm.
Lori Williams
Yes, yeah, don't get stuck on the whole fast thing, because that's what I was stuck on. Like, I just got to get in there fast, you know? But, you know, we went to the wrong hospital and they had to call their sister hospital and, you know, they ended up care -fighting him, which was a huge expense that we wouldn't have had had we gone to the right hospital. But he gets to, he's care -fired it to a hospital like 20 minutes away.
Brandy Archie
Mm -hmm.
Brandy Archie
Mmm.
Lori Williams
I drove up there when I got there, they had given him the clot busting drug prior to putting him on care flight. And when I got there in the emergency room, he was talking and he was like, he kind of slurred a little bit, but he said that was so weird because they were asking him, what's your name? And he couldn't say his name when he was in the first emergency room. you know, what's your birth date? And he would just kind of like look and laugh. Like he could not recall these simple basic things. So.
By the time he was in the second emergency room, he was, he was saying he could talk and he just said, was so weird. And then he told me that, prior to saying the blessing and not coming out, he was having some symptoms that he didn't tell me. So he had been trying to call his niece and put a number into his phone and it numbers weren't making sense to him. And I don't know for whatever reason he.
Brandy Archie
Mmm.
Lori Williams
decided not to share that information. You know, I don't know if he thought it was just some weird thing. I don't know. But so he ended up being admitted. We use an ICU and you know, they confirmed he had a stroke. It was just one stroke at that time. And, you know, the next day when the neurologist came in, he said, you know, he kind of dodged a bullet here. It's looking good. Probably by next Christmas, you won't even be able to tell that he had a stroke.
And so we're all like, yay, that's great. The next day though, I'm sitting there talking to him, looking right at him and I just see him just go down and his face, everything just went limp and drooped. And he had what I found out later was three strokes, a stroke shower, which I'd never heard of, but they were just boom, boom, boom, three strokes at one time. And they did severe damage, unfortunately. So, so that's kind of been our story in a nutshell. And it's been,
You know, lot of figuring out next steps, being his advocate, you know, he was in the hospital because of course this fell right between Christmas and New Year. So it was kind of a nightmare getting through that because people weren't working. Nothing was moving quickly and we were changing insurance at the first of the year. So we had all that happening as well. But he finally, think it was January 6th.
He was sent to a rehab hospital. Then he was in a neuro rehab for seven months. And then
Brandy Archie
Whoa, what kind of neuro rehab did he go to for seven months?
Emilia Bourland
like a day neurorehab program.
Lori Williams
No, no, he lived at Pate. He was at Pate. Yeah, yeah. He lived at Pate for seven months and then came home and he did outpatient neuro until about a month ago. Now he has a neuro rehab that comes to the house for him. So, but it's been, it's been quite a journey. And, you know, I mean, I'm, thankful that, you know, you kind of listen to
Emilia Bourland
he lived there. Yeah, was in, yeah, living there. Okay.
Lori Williams
when you have those feelings like intuition. And I'd had a feeling in early December that I needed to get us on like a regular insurance. We were on a Metashare plan, which was great. I'm self -employed, so it's not a whole lot of insurance is available to you. So we were on this Metashare plan, which had we not been going onto the insurance January 1st onto the regular.
and it was an exchange program that we went on, he would not have been able to go to the hospital rehab unless I paid $80 ,000 upfront. And I did not have $80 ,000 to pay upfront. So thankfully everything worked out and I had listened to my intuition to get this regular insurance. It had gone into effect January 1st. And so this insurance, which is a Blue Cross Blue Shield HMO has covered
all of this rehab, seven months living in rehab, everything has been covered. that's the good news. So always listen to your intuition is my other kind of takeaway from this whole story.
Emilia Bourland
also want to point out something that I think that you have done really well as an advocate, which you have done something that I think a lot of people don't realize is even possible. You have advocated and gotten way more rehab than just a couple of weeks in like an IPR or inpatient rehab, which is what a lot of folks end up getting. And of course, like inpatient rehab, if you have a stroke that has significant impact, really should just be the first step.
Brandy Archie
Mm -hmm.
Emilia Bourland
of the journey once you're discharged from acute care because we know that people continue to recover from strokes for a long time. In fact, we still see pretty, we see like, you if you look at the research, we see the most recovery in the first six months. We could see continued substantial recovery through the first year. And then actually the research kind of drops off after that. But in my own clinical practice, I know that...
Brandy Archie
Mm -hmm.
Mm -hmm.
Emilia Bourland
we can continue to, the brain is never static, it's always developing and it's always changing and we can always use that neuroplasticity to continue to get positive change. And so something that I want to point out that I think you've done really beautifully and that I want to, you know, encourage people to do is advocate for more rehab and more therapy because recovery doesn't end a month after stroke. In fact, that's just
Lori Williams
Mm
Lori Williams
Mm
Lori Williams
Exactly.
Emilia Bourland
barely, barely the beginning. And so, you know, making sure that he's had the opportunity to get all this rehab on an ongoing basis, like, I just know has made, I just know has made a difference, you know.
Brandy Archie
barely the beginning.
Lori Williams
Mm -hmm. Yeah.
Lori Williams
Mm
Lori Williams
It has. I mean, you're right that he is, I mean, he is, it'll be two years this Christmas and he now gets where they come to him. He's on a rehab without, what is it? Rehab without walls. I always want to say rehab without borders, that's not it. It's rehab without walls is who comes to him now and he gets 24 hours of rehab a week, which is kind of incredible. Now here's the thing. This is the, yes, yes.
Brandy Archie
Yeah.
Emilia Bourland
in his own environment, which is like the best.
Brandy Archie
The best and so important.
Lori Williams
with our, with, yeah, with our dog who has made herself into a therapy dog, laying on the bed with her, you know, face on his shoulder, you know, and he's doing PT. So that's, mean, that's beautiful that, and that's what he, you know, it, it really makes a difference for him. But, here's the thing though that I've learned. So he is not Medicare age yet. Had we been on Medicare, these options would not have been available to us because
Brandy Archie
Okay.
Lori Williams
Medicare does not pay for it. I've asked the questions of, he's been at PAID, he's been at Center for Neuroskills, and now he's Rehab Without Walls. And so that's the problem is Medicare won't pay for it for whatever reason. Also, I want to say because we are in a big city like Dallas, he has had more, there are more resources because I have a friend who's a neurologist in Mississippi and she said there is nothing, nothing like this.
Emilia Bourland
Mm
Lori Williams
And I recently had lunch with someone from CNS, Center for Neuroskills, and she said that they have teams who go all over the country and will bring people from other states here to do their program. So, I mean, I think those were the things that were on our side. Now, Mark will be 64 and a half on December 22nd. And at that time, he has to go on Medicare because he gets disability.
So when he goes on Medicare at that time, we won't be able to get what he's been receiving. So I'm just, you know, hoping we get all of this until the very last minute until we have to switch to Medicare. And then that will look a little different. So he'll still be able to get some rehab, but that I know that'll be limited.
Brandy Archie
I think you have just dropped a whole lot of gems and wisdom in a short amount of time. And I just want to backtrack just a small bit to be able to like lay that out for people and how they can enact that in their own spaces. And so first of all, you reference FAST, which is a commercial thing that went out. And think there's a new, a longer Ackerman is BFAST. Yes. And we should say what that stands for. So the B is what?
Lori Williams
Mm -hmm.
Lori Williams
Mm -hmm.
Emilia Bourland
It's actually be fast, be fast.
Lori Williams
Yeah, fast now.
Lori Williams
balance.
Emilia Bourland
is for balance.
Brandy Archie
Balance, okay, balance, face, arm.
Emilia Bourland
No, balance. So it's B, B, E. So it's balance. Take it, take it away, Lori. I know you got this.
Lori Williams
Okay, B is for balance, E is for eyes because you can have vision changes when you're having a stroke. F is for face if you see any kind of drooping, A is for arms. You ask them to lift their arms. If one is drooping, there's an issue. S is for speech, which was what was happening with Mark. And then T is time and call 911.
Brandy Archie
Right, but also because he had a stroke that was embolic or that was able to use the TPA in order to break up the clot the first time, my question to you is did you note the time and did they ask you what time it happened at the hospital and were you able to provide that for them?
Lori Williams
Mm
Lori Williams
Mm -hmm.
Lori Williams
Mm
Yeah, because it happened at exactly seven o 'clock. And I know because when we were standing in our kitchen, we have a big clock in the family room and I was looking at it and it was seven o 'clock on the dot. So I could tell them that he got the clock buster probably by seven 30, I would say by the time we were there and they were talking to the other hospital. So yeah, he got it quickly because I believe it's a two hour timeframe and he had it probably within 30 minutes, 30 to 45 minutes.
Brandy Archie
Which is why it was effective originally, having not had multiple strokes. But like, it's really, did you, my other question I guess is, did you intentionally note the time because of the fast acronym, or did you happen to know because you had a big clock?
Lori Williams
Yes.
Lori Williams
had a big clock and I just, I had looked at it and was just thinking, I were eating so late at seven o 'clock and then, you know, I asked him to say the blessing and that's when, you know, okay, this is happening. And then with the stroke shower, the reason that the, wasn't effective on those is that it was actually plaque that came from his carotid. So, and you know, as we learned more about what was happening with him, his left -sided
Brandy Archie
You
Brandy Archie
Mm -hmm.
Brandy Archie
Mmm.
Lori Williams
carotid was completely calcified. And so there's nothing they can do to clear it at that point. But it threw the, I guess like the plaque clots. And so that's why it wasn't the tenectoplasm was not effective.
Brandy Archie
Mm -hmm. So I just wanted to highlight that because I want people to know that like that's a, you can't have the TPA after a certain time window. And if you're not a hundred percent sure or like pretty close to sure about what time has happened, then they can't really administer it. And that can be a big difference between what level of disability occurs after the stroke or lack thereof. And so I'm so glad that you had like that.
Lori Williams
Mm -hmm.
Brandy Archie
the acronyms stuck with you and that you were able to do those things. And then the other thing is that I'm really interested in some of the mechanics of the actual rehab and the stuff that you got, because you see my face drop when you said he stayed at that place for seven months, because that doesn't usually happen, even if you're on private insurance. And the intensity of the rehab that can occur when you have an inpatient stay is significantly different than what usually,
Lori Williams
Mm
Brandy Archie
typically occurs in home health or outpatient or some other mode. And so especially for stroke and other neurological things, it's like so all encompassing that you really want to have as many skilled clinicians around as possible for as long as possible to get as much rehab. So can you tell us just a little bit more about, was it a particular program that allowed him to stay that long or were you like, no, he's not ready and can we stay here longer?
Lori Williams
Mm -hmm.
Lori Williams
So it was all kind of on them. with his strokes, when he had the strokes, so when the strokes happen on your left side, it affects your right side. So it affects the left side of your brain, it affects your right side. So he has severe aphasia, apraxia, and when he left the hospital to go to the first in hospital rehab, he was paralyzed on his right side. So he left the hospital
you know, medical transport on a gurney. So he could not even like move. So once he finished the in hospital stay, there was no way I could bring him home. I mean, he still, was not able to walk at all. They had had him in a wheelchair. He could sit up in a wheelchair and things were getting better. Like he doesn't have a significant droop in his face. All that kind of like went away in like probably the first two weeks.
And he initially had a lot of vision issues as well, which have since gotten much better. So, I mean, I don't know if other people like knew, I asked for Pate because people were telling me that because I also work in this in senior living. So people were reaching out to me who,
Emilia Bourland
So, yeah.
Lori Williams
you know, we're worked in home health or different things and they're like, Lori, you need to contact Pate, which I had known of Pate. I had never been there, but I knew of it. And so I called them and I said, this is where I think my husband should go. And they came to visit him. They assessed him and said he would be right for them. I also learned later that there's some kind of mandate in the state of Texas. It's like a brain injury mandate. I think is what it's called where you, where they have to provide
so much rehab for someone who's had a brain injury, whether from a stroke or a TBI traumatic brain injury. So I don't know a whole lot about that, but that's what I was told by Pate and then also CNS mentioned this mandate. So I don't know if y 'all know about that or not, but that's something in the state of Texas, which I believe helped us also.
Brandy Archie
Mm -hmm.
Brandy Archie
I think that's super important because every state has different things going on. like, even though Missouri, for example, doesn't have hate to my knowledge or Kansas City, there are other waivers and other things that are going on with brain injury. so because the way our healthcare system works and the payment works, it's all very disparate. And I think the biggest thing to note is like ask more questions and connect with people who might know about things that you haven't heard of because you haven't had a reason to hear about it, you know?
Lori Williams
Mm -hmm.
Lori Williams
Mm -hmm.
Lori Williams
Exactly. And again, another reason why I wrote the book is that I was fortunate in that I had people who work in this industry and that work that had knowledge and were coming to me because, you know, I wouldn't have known any of this. once I assessed and they said he would be a good fit for paint and they have three locations in the Dallas Fort Worth area. And I went and visited all three and chose.
Brandy Archie
Mm -hmm.
Lori Williams
chose one that was an hour away from my house because I just felt it was right for Mark and it was out in the country. It's in Anna, Texas and they had donkeys and horses and my husband was a farm guy. So I just felt like that would be a healing environment for him. And that was six hours and they're licensed like an assistant living. so he lived.
Brandy Archie
Mmm.
Lori Williams
And there were two different houses. You had the first house you go to and you live there and you go to therapy five days a week, six hours of therapy and it's physical therapy, occupational speech. I mean, they did other things with him too. Like I think they had like a therapist talk to him. Just make sure he wasn't becoming depressed. Yeah. Yeah. So there was, mean, all kinds of resources available.
Emilia Bourland
Yeah, they have neuropsychologists like there too.
Brandy Archie
Mm
Lori Williams
Their social worker was wonderful. She gave me a great resource that helped me get, disability for him much quicker. And, so that was, that was great. And, I put that in the book as well. It's called also .com. If you, there's anyone trying to get disability, they, we were able to get disability for Mark. As quick as I think anyone could, we had to wait three months after the stroke to apply. And then we had disability within three months.
So that was kind of crazy.
Brandy Archie
That was literally my next gym I was gonna say you dropped because I said he's already on disability which and it's been less than two years and usually it takes people that long. So that's really awesome and glad you put that resource in the book too.
Lori Williams
Yes. Yeah. Yes. Yeah. I just thought it was so important because I see so many people struggling with getting disability and I started filling it out on my own and I was like, holy cow. So when I got that resource, I contacted them and I mean, I think that's like a record to have it within six months of a stroke. were, yeah. Yeah, it really is. So, so he did the therapy there and
Emilia Bourland
Mm
Brandy Archie
Yes.
Emilia Bourland
Yeah.
Emilia Bourland
It's pretty insane actually, it's pretty insane. Yeah.
Brandy Archie
Yes. Yes.
Lori Williams
towards, I guess about maybe like five months in, he graduated to the next house, which is the big house. And that one, it's like, it looks like assistant living. So he had like a little apartment and they start teaching him to do things like wash his clothes. And he was able to do things in his wheelchair. And each month our insurance would say, you know, yes, we'll continue paying for it. It was based of course on if he was getting better and participating, which he was.
really has through all of this, he's had a very strong desire and strong will to get better. which I think is huge because mindset is, you know, that's a big part of it, which I even talk about that in the book too, that without him having that mindset, he wouldn't have continued being approved for all this therapy. So he always gave it a hundred percent. And they were just, they were wonderful. They let us bring our dog to visit him and
Brandy Archie
Mm -hmm.
Lori Williams
you know, outside, but you know, it's just things like that that make a difference for people. So we had hoped that he'd be able to stay, you know, maybe like eight months, but at the seven month mark, they said, you know, it's, we, we feel like he can just go to the day neuro program. Now he was at the point where he could walk with his, with his cane walks short distances and transfer well. So, and during this time they had sent an occupational therapist to my house and Mark.
to figure out what we need to do to our house. Because here's the other thing people don't realize, your standard house, and like, why would you know this? The standard house, the doorway into the bedroom is wide enough for a wheelchair. The doorway into a bathroom is not. So we had issues, and like in Texas, a lot of the master bathrooms are built where you've got the big bathroom and then you have like the little potty room kind of thing.
Emilia Bourland
the tiny toilet closet.
Brandy Archie
A little toilet closet. Yep, hate those.
Lori Williams
Yeah. Yeah. And there's nothing, yeah, there was nothing we could do to fix that. So thankfully we had bought this house 27 years ago. And when we bought it, I still remember to this day walking in and Mark saying, this is the perfect house. Cause the master's down, there was another bedroom and bathroom down. And he said, when we're old, we can stay here. We will never have to go upstairs. And so I was like,
Brandy Archie
Mm
Lori Williams
Ha ha, that was funny when we were 30. But I kept remembering that. I'm like, my gosh. And so I ended up having a friend who is a realtor and she has helped people redesign bathrooms and she designed the perfect bathroom for Mark. We had to blow out a closet to make the doorway big enough, but we built a huge shower, everything so that he could come home. so.
I was very proactive and I think that's important for people to do too because they told me at PAIT that most people wait to the last minute. You can't wait till the last minute to rebuild a bathroom because that took about eight weeks to get it completely done. So you have to be on it right away. you know, that was one thing throughout all this. I was trying to stay a few steps ahead and know what's going to be next.
Brandy Archie
Yep, exactly.
Brandy Archie
so that's a great point. My question for you is, how did you try to stay one step ahead or two steps ahead? Because you don't know what to do. This is not even an experience that you've had. So what tactics did you use in order to try to look ahead?
Lori Williams
Mm Yeah. Mm -hmm.
Lori Williams
Well, I mean, I would stay, talk to the social worker a lot. And so we kind of, had the game plan. So from the moment he went to PAIT, which was the end, like end of January, he went to PAIT. They were talking to me about, okay, we, we believe we'll be able to keep them until May. That was the original thought. And then, so I said, okay, great. I went, they told me about the occupational therapist coming out and I'm like, let's do it now. Let's do it as soon as possible. So she came early March.
Brandy Archie
Mm
Lori Williams
So it was like not putting off and I was like, let's get this done. Like, mean, I honestly could not sleep at night just for all the things swirling in my head. Like I've got to do this, this and this and I've got to keep working. I've got a kid in college, you know, it was just a lot. But I mean, I'm just, I'm a planner by nature. So I think that probably helped me. So when they came out, you know, immediately I knew what we needed to do to the house. And so, you know, I got on that because my initial thought he was coming home in May.
Emilia Bourland
Mm.
Lori Williams
And then they ended up keeping him until the end of July. So everything was ready when he came home. We were able to start bringing him for short visits at home, which was nice. And because I had a bathroom he could use and, and he was able to transfer. So, so that's, that's why I think it's so important, like know what's coming next. And I was always asking the social worker, okay, what's the plan once he's done here?
Brandy Archie
Mm -hmm.
Lori Williams
what's the next step? And that's when they said he would go to the outpatient neuro, they provide the transportation. And then that was, you know, that was intense for him. but it helped, it helped a lot.
Emilia Bourland
think one of the other like really important takeaways from listening to your story is how well you utilized your resources, both in the community around you and then the people who were currently serving Mark and serving you at that time. You talk to them, you ask them questions, you ask them about that next step and what that meant, you know, early on in the journey.
Lori Williams
Mm
Lori Williams
Mm
Emilia Bourland
I think that's one of the things that unfortunately sometimes healthcare providers don't always, you know, they get in the rush and they don't always necessarily do the best job letting you know, okay, what's the next resource after this? Because as you said, we're really, really lucky in the DFW area to have two really excellent neuro specialty rehab centers in PAIT and CNS. And that's not necessarily everywhere, but
Lori Williams
Mm
Emilia Bourland
The only way that you would know that those things exist is if you are already in that world, right? So asking the people around you, asking the social worker, the physical therapist, the occupational therapist, the speech therapist, the neurologist, hey, is there another level of care after this that you would recommend? Is there another resource out there that you think that we should be looking into? And how soon can I get started on that? And I think that you...
Lori Williams
Exactly.
Brandy Archie
Mm -hmm.
Emilia Bourland
you know, having those conversations and really being engaged yourself as an advocate with that rehab team makes a huge, huge difference. Because if you, if you don't engage with the rehab team and, know, sometimes I think people just, the, the, don't, people think, I don't want to, I don't want to bother the therapist. I don't want to bother the social workers. I just want them to, you know, go do what they need to do. And like, they're the bosses, but actually it's
Lori Williams
Mm
Emilia Bourland
It's all teamwork and it's all a partnership. So being engaged in that process and getting that information makes such a huge difference for the kinds of resources that you'll know about, the resources that you can get access to, and ultimately like impacting that long -term outcome in a really positive way.
Lori Williams
No, I do want to add one thing though. you know, I never, I don't like going negative, but I do want to say this that in two, and I'm not going to name them two of the places Mark was, the social worker case manager never helped us at all. Not at all. And so that can happen. And if that does happen and, honestly, I mean, I'm just thankful I had other people. mean, I guess you could ask to talk to us another.
Brandy Archie
Mm -hmm. Mm -hmm.
Emilia Bourland
Mm
Lori Williams
social worker, mean, just you have to be the advocate. For me, after trying several times, I just went to my resources, my people that I know in the industry and they helped me. So, I mean, that was an advantage that I had, but if you run into an experience like that where you're not getting any kind of feedback, you're not getting the resources that you need, you just have to speak up.
Brandy Archie
Mm -hmm.
Emilia Bourland
Yeah, yeah. And talk to something, you know, I think you were really lucky that you have so many connections in like the local industry here. For folks who don't, make sure that you, and you're not sure who to ask or where to go, don't just talk to the social worker, ask every member of the team who walks in the door. Do you know anything about this? Do you have any recommendations? Someone, at least one person should be helpful and should know.
Lori Williams
Mm
Brandy Archie
Who should I talk to?
Emilia Bourland
what to do. And if they, if really no one is being helpful to you and no one seems to know what to do, then maybe it's time to think about, you know, asking for a different provider or asking to see another, another team member to get those resources because someone's got to know something, right? And it is the job of that healthcare team to not just help you right there in that moment, but to help lay a foundation for a stronger, better recovery in the longterm, no matter what level of care you're at.
Lori Williams
Exactly.
Mm
Brandy Archie
Mm -hmm.
Brandy Archie
And at the bare minimum, at least help you know how to do the next step, even if they don't walk you through the whole process, but like at least help you get to the next step. And if you're not getting that, then reach out, you know? like, even if it's to somebody who's not in your area, just somebody who's in healthcare or shoot, literally at Ask Sammy and find a clinician there who can help you navigate, like that's really the most important part. I'm so, I'm so conflicted, I think.
Emilia Bourland
Mm -hmm.
Lori Williams
Mm -hmm.
Mm -hmm.
Lori Williams
Yeah.
Brandy Archie
It's sad that you have to, you and the greater you of all of us in America have to be such big advocates for our family members and friends in the healthcare system. And it doesn't just flow easily like that, but I'm really glad that you were able to navigate in that way and then also share all of those learnings with others so that they can also find ways to apply that in their own situation.
Lori Williams
Mm
Lori Williams
Yeah, agreed. I feel like, you know, one of the things I was making notes on on my phone was when Mark was in the first hospital. I mean, it was just like, once he went from ICU to the, I think it was an ICU four days, and then he went to a room on the neuro floor. And that morning, like the fourth day he's there that morning, a doctor came in and said,
when is he leaving? When are you getting him out of here? And I'm just like, he's hooked up to everything. He can't walk. And, you know, all I could think was, again, if I were 85, instead I was 58 at the time, but if I was 85, I mean, older people have a different way of responding to doctors. They think they know everything. you know, I was like, kind of like dumbfounded. And I'm like,
Brandy Archie
Mm
Lori Williams
I'm waiting on insurance, we're trying to figure a plan, he has to go to in -hospital rehab. Well, mean, fortunately, you I do know people in senior living and in all the different, you know, in healthcare, one of my closest friends is a neurologist in Mississippi and my sister -in -law is a nurse and nespetist. So I had them, and so I'm telling my sister -in -law who happened to be there at the time, and she's like, no.
This doctor cannot be trying to force you out of there. comes back the second, like the, or the fifth morning again, when are you leaving? And my sister -in -law was up there later and she told the neurologist what was going on. And he's like, no, this is not okay. This is, mean, adding more stress to a family, but I mean, if I didn't have all these resources and if I were, you know, an older person, I might've been thinking I have to go now, you know, I mean, it's just, you've, felt kind of.
Brandy Archie
Mm -hmm.
Lori Williams
Honestly, I felt bullied, like, you need to leave. We want you out now. And I'm like, what do you want me to do? I mean, he can't walk. mean, he can't talk. What am I supposed to do? So, so that's, mean, that was why I really, another reason I wrote the book, just, you have to be an advocate and you have to ask questions. And if you don't like what a doctor is telling you, like this doctor wasn't even my husband's doctor. You've got to tell.
Emilia Bourland
Mmm. Ugh.
Lori Williams
the doctor in charge, know, tell whoever is treating your husband or wife or whoever it is, tell them what's going on, speak up.
Emilia Bourland
So I think it's pretty obvious from the like number of absolute golden nuggets of information that you dropped during this conversation, why people should check out your book. Would you please, and I think we could probably talk ad nauseum. There are actually so many more questions that I had for you and I just don't think we have time for everything during this conversation, but we would love to have you back if you would ever be interested in that. But would you?
Lori Williams
Sure. Yes, of course.
Brandy Archie
Yes.
Emilia Bourland
Would you tell people where can they find your book?
Lori Williams
Okay, it's on Amazon and it's in hardcover paperback kindle and it's coming soon on Audible. that probably in another three weeks or so, I hope. But it's called Surrounded by Love and it's, I don't know if you can see it here. This is what it looks like. And I chose a picture that, not actually my husband and dog, but it really looks like them. So put that on the cover.
Brandy Archie
Mm -hmm.
Lori Williams
with his, can't move his right arm, so he's doing his left arm in victory because he's overcome so much. But you can find it on Amazon.
Brandy Archie
I am just so grateful that you came to the podcast and you know, Emily, mean, sorry, Amelia and I, I don't know why I said that. Amelia and I are.
Lori Williams
Thank you.
Lori Williams
You
Emilia Bourland
Story of my life, dude. Story of my life.
Lori Williams
Hahaha!
Brandy Archie
I think like there is so much power in hearing things come from somebody who's experienced it. And Amelia and I, both in healthcare, we both worked with patients who've had strokes and we could have said all these same things, but it means so much more when it comes from somebody who's experienced it. And so thank you for coming on the podcast to be able to share that with others and for putting it in book form so that people can access it for forever.
Lori Williams
Mm
Lori Williams
Mm
Emilia Bourland
Yeah, I really, really believe that this is the kind of information that can genuinely change people's lives and really make people's lives better. So thank you so much for sharing it here. Thank you for sharing it in your book. As I said, we'd love to have you back again. Listener, if you enjoyed this information, if you thought it was helpful, if you liked the podcast, please make sure that you are...
Lori Williams
Sure, thank you.
Brandy Archie
Yeah.
Emilia Bourland
liking us subscribing to CareLabs so that you get notifications when the next episode drops, which is every Friday. Leave a comment if you can. Ask us your questions. If there's something that you want to know about or a subject that you would love for us to cover, let us know. And Brandy, anything to add before we sign off here?
Brandy Archie
know, like and review it and we'll see you next time.
Emilia Bourland
We'll see you next time right here on Care Lab. Bye.
Lori Williams
Bye.
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