Few things are sadder than seeing a loved one slip gradually into dementia.
This is what happened to my grandmother – my mom’s mom. She got to the point where she couldn’t live on her own any more, but she didn’t really have other debilitating health issues. So she didn’t need to be in a hospital, or a nursing home. She just needed someone around to help her with daily living, because she would forget things.
So my parents converted their garage into a small apartment so she could live there. And she loved this. At the time our two kids were young, maybe 6 and 8, and we’d go over and visit pretty often. We’d be in the main part of the house, and Grandma would ask, “Hey, have you seen my new apartment? Come on, I’ll give you the tour!” So we would all go over and she’d show us all around – this is my bed, and this is my chair where I like to sit and read, all the stuff. And then we’d all come back to the main house.
And then maybe five minutes later, Grandma would look up like she just thought of something, and ask, “Have you all seen my new apartment? Come on and let me show you!” and we’d just go and take another tour of the apartment. Our kids understood the basics of what was happening, and they just thought it was hilarious. We all just played along each time, because that’s what made Grandma happy. But it was also sad to see her gradual decline.
My guest today, Kari, could tell that her dad was slipping into dementia. And she wanted to help. But she never expected to see him decline so rapidly. And there was really nothing she could do, because it happened on a 1700 mile road trip.
If you’d like to contact Kari, she is in the WWTL podcast Facebook group –
https://WhatWasThatLike.com/facebook
Full show notes and pictures for this episode are here:
https://WhatWasThatLike.com/204
Graphics for this episode by Bob Bretz. Transcription was done by James Lai.
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Episode transcript (download transcript PDF):
Few things are sadder than seeing a loved one slip gradually into dementia.
This is what happened to my grandmother – my mom’s mom. She got to the point where she couldn’t live on her own any more, but she didn’t really have other debilitating health issues. So she didn’t need to be in a hospital, or a nursing home. She just needed someone around to help her with daily living, because she would forget things.
So my parents converted their garage into a small apartment so she could live there. And she loved this. At the time our two kids were young, maybe 6 and 8, and we’d go over and visit pretty often. We’d be in the main part of the house, and Grandma would ask, “Hey, have you seen my new apartment? Come on, I’ll give you the tour!” So we would all go over and she’d show us all around – this is my bed, and this is my chair where I like to sit and read, all the stuff. And then we’d all come back to the main house.
And then maybe five minutes later, Grandma would look up like she just thought of something, and ask, “Have you all seen my new apartment? Come on and let me show you!” and we’d just go and take another tour of the apartment. Our kids understood the basics of what was happening, and they just thought it was hilarious. We all just played along each time, because that’s what made Grandma happy. But it was also sad to see her gradual decline.
My guest today, Kari, could tell that her dad was slipping into dementia. And she wanted to help. But she never expected to see him decline so rapidly. And there was really nothing she could do, because it happened on a 1700 mile road trip.
Scott
Growing up, Kari was always a daddy’s girl.
Kari
I was always very close with my dad when we were young. He was a good dad. I remember, when I was little, I would sit on his lap at dinner or before dinner and in his reclining chair and cuddle with him. He always made a point of doing things with me, even though I was a girl. I have an older brother and they would go fishing a lot, but my dad would take me with him sometimes and stuff. But every time my dad saw me, he always did, like, a little fake pinch on my cheek and he would get a big smile on his face.
Scott
Kari’s dad was from Newfoundland originally, but their family made their home for many years in Acton, Ontario, before he retired.
Kari
Met my mom. She’s from the same town. She raised me and my brother here and decided to move back to Newfoundland in 2007 because it was my dad’s dream to retire and go back to his hometown. They moved there, actually, sold their house, packed up, and bought a house in Point Leamington in 2007.
Scott
So, they were enjoying retirement and would come back to Ontario to visit sometimes. But there was one visit in 2013 when Kari noticed some changes in her dad.
Kari
First sign was…. we have a gas stove and my dad had a small plate of leftovers. I think it was, like, Boxing Day or something. In his mind, I think he wanted to warm it up in the microwave – I think that’s what his intention was – but, for some reason, he took this plate and put it on our gas stove and turned the burner on. So I’m looking at him and I’m like, “Well, that’s weird.” and kind of panicked. I was like, “No dad, it goes in the microwave.” And he would get all frustrated really easily.
Another thing is boiled eggs. He forgot how to boil eggs and he loved boiled eggs. He probably boiled a million eggs in his lifetime and he completely forgot how to boil an egg. He said to me, “How do I boil an egg?” It was little things, but I wasn’t living with him, so I didn’t see this on a daily basis. But because there was so long of a gap in between seeing him, I would notice these big differences and things he would forget.
Scott
Kari and her husband, David, would also go and visit her parents most years but then there was a gap when they couldn’t make that trip, and the decline was more noticeable.
Kari
We went in 2019 and then COVID hit in 2020. We couldn’t go at all in 2020, so me and my husband went in the summer of 2021. We took them on a road trip for a few days and we stayed in cabins and he was still somewhat with it then. He could still say words properly. His sentences weren’t the best but you could still somewhat have kind of a conversation with him, but he wouldn’t say anybody’s names anymore. He knew who we were, but he couldn’t say anybody’s names. It was like a blank to him. Because I hadn’t seen him in two years, I noticed a big difference.
Scott
One of Kari’s biggest concerns was if her dad would ever need urgent medical care, there was nothing close by.
Kari
Where they lived, it was such a small town that, to go anywhere, they would have to drive to Botwood, which would be a 20-minute drive, and that’s just a tiny hospital. Grand Falls would be a 45-minute drive, Gander was an hour and a half. Everything was far away. It’s not like here or the US where we have towns with all these side roads and back roads – there’s one road in, one road out – to pretty much every town in Newfoundland. It’s just forest, ocean, and rock in between. There’s no little towns in between. There’s no homes on the side of the road. There’s nothing.
Scott
Kari’s mom was the full-time caregiver, but it was becoming too much for her.
Kari
I could see my mom was struggling with my dad. He wouldn’t take his medication anymore, so we used to have to grind it up and put it in chocolate pudding for him. It was the only way he would eat it without knowing about it. He was starting to get up in the middle of the night. For fifteen or twenty times, he would just get up and turn the sink on and not do anything. He was just up and down constantly all night long, and my mom was clearly getting frustrated. She had her own health issues over the years. She wasn’t in the best of health to be able to take care of my dad.
Scott
So Kari and Dave decided that a change was needed.
Kari
Basically me and my husband, Dave, came up with a plan. We were going to say, “Come back to our house. We’ll build you an apartment in our basement. You and dad can live there where we can all help you take care of dad and you’re not on your own.”
Scott
It still took a bit of convincing to get her mom to agree to leave Newfoundland.
Kari
As frustrated as she was, it was a bit of a tough sell because she loved her house. They owned it outright. They had a beautiful plot of land in Newfoundland, high up on the hill. You could see the bay out from the distance, and it was just beautiful. It was just forest. It was nice. I mean, it was a nice house with a beautiful property and it was, like, her dream home, her whole life type of thing. So it took a lot of convincing to get her to come back with us.
Scott
But her mom did agree that it was best. So the house was sold and the plan was for Kari to fly back in September. Dave couldn’t go with her because he had to work, so Kari would spend three weeks getting everything either packed up or sold, and then drive them back to Ontario. This was a big project.
Kari
It was after much trepidation with my mother, her trying to get rid of stuff, I’m like, “Keep or get rid of. Quick response. Keep or get rid of,” because they were moving from a three-bedroom home to a one-bedroom apartment, essentially, so they had to significantly downsize a lot of their stuff.
Scott
Kari’s dad, at this point, didn’t really understand what was going on, but he didn’t like it.
Kari
He was not happy. He just knew there was a lot of commotion going on in the house. Things were changing. Everything was different. My dad had become very much of a routine person. Everything had to be familiar to him. So, once things were being moved around and in boxes, and a lot of people were coming in and out, he was very agitated and mad that stuff was going out the door and not coming back. He didn’t understand what was going on at all.
Scott
But he had his cat.
Kari
His beloved cat, Kirby. Oh, he loved that cat. Yes, that was his pride and joy, Kirby. Kirby the cat was the size of a dog. He was a big cat – a big orange and white cat.
Scott
So everything is done, and they’re ready to embark on this trip to Acton, Ontario. Kari will be in the driver’s seat, her mom in the passenger seat, and her dad in the backseat, with Kirby. This is a long trip – it’s around 1700 miles or about 2800 kilometers. That’s about the distance from Chicago to Los Angeles. Before we talk about what happened on this trip, you need to understand that it’s divided into six different segments or legs. I’ll kind of summarize what those are and the trip can begin.
First, you leave the house. You’ve got a three-hour drive to Corner Brook, Newfoundland – and we’ll talk about that – that was a visit. And then another two-hour drive to Port aux Basques – that’s where the car ferry is. Then you’ve got the 6-hour ferry ride over to Nova Scotia. And then from there, you’ve got a two-hour drive where you’re going to stay overnight. The next day, a 10.5 hour drive, that’s leg five. And then, finally, another 8.5 hour drive to get to your house. I’m exhausted just thinking about all of that. And your mom doesn’t drive either, right?
Kari
Well, she does drive, but she didn’t want to drive. I said I would do all the driving just to make it easier on her because then she could control my dad and do what she needed to kind of keep my dad settled in the back. So, I said I would do all the driving. I’d always wanted to do the drive from Newfoundland to Ontario or vice versa. I did it once when I was a kid with my family. I was like six, but I’d always wanted to do it as an adult. So I thought it would be a great trip experience.
Scott
Okay, so let’s start off from their house to Corner Brook, Newfoundland. Why stop there?
Kari
We went to Corner Brook so my dad could see his sister, Mildred, for the last time. She was about 8 years older than my dad, but she was always very close with my dad because he was the baby of 13 children. All of his older sisters treated him like he was their own child. She was one of the few that was actually left in Newfoundland, so we had to make a stop there so he could see his sister, Mildred. She knew it would be the last time she would see him, but he didn’t understand what was going on. He just thought he was visiting his sister.
Scott
Yeah, that’s got to be kind of a bittersweet visit.
Kari
Yeah, I mean, that first leg of the drive, he was okay in the car. He wasn’t too bad. He had his cat in the backseat in the carrier with him at this point. We just told him we were going to see Mildred, so he was okay with that stretch of the drive.
Scott
And that was a 3-hour trip.
Kari
Yeah, it’s about three hours. Not too bad. We left early in the morning, so we were there at a decent time.
Scott
So you stayed overnight at a local hotel there and then, the next morning, you drove for a couple of hours to get to the ferry. Take us from there.
Kari
Yeah. We left from Corner Brook to Port aux Basques. I think we left 8 or 9 in the morning because you get to the ferry– and it’s a big ferry. It’s called Marine Atlantic and it carries a lot of cars, but it also has three decks above where you have cabins, or you can have a chair and an open room and it’s got restaurants and all this stuff. But this being COVID, nothing was really open yet and there were a lot of restrictions in place. We had to be there really early and then you kind of get to the parking lot, wait in line with all the other cars, and they tell you which lane to go in based on the size of your vehicle where you’re going to park on the boat.
Scott
How many cars can that ferry take?
Kari
Oh my gosh. I would easily say a couple hundred plus transport trucks. They park a lot of the transport trucks on the top deck of the boat. They have a fleet of a few different boats, so you kind of drive into the bottom of the ship when you get on. So it’s kind of a cool experience, for sure.
Scott
Yeah, it sounds interesting. You were going to be on this ferry for 6 hours.
Kari
As long as you have good weather, yeah, 6 to 6.5, depending.
Scott
What do you do on a car ferry for six hours?
Kari
Well, luckily we got a cabin. Even though it was only 6, 6.5 hours, we thought it would be best to have a cabin because it had two little single beds, a TV, and our own bathroom. So if my dad was to get agitated or tired, at least he could lay down and have a nap. And we had our own bathroom, which made it a little bit better. And we could hopefully try and keep them kind of chilled out on this experience because my dad loved the water and my dad was a fisherman. He did a lot of fishing growing up when I was a kid. He just loved fishing. But the dementia made him afraid of the water.
Scott
Oh, so he wouldn’t want to be out on deck looking at the water then?
Kari
No. Well, at one point, I did try to get him out on the deck when he would stay kind of close to the wall but, yeah, he was kind of scared. It wasn’t the clearest day. It was a little foggy and misty rain, so we didn’t stay outside too long but, yeah, he was deathly afraid of the water at this point. We watched TV and he was getting agitated at one point, so I said to my mom, “I’ll take him for a walk around the boat. We’ll just kind of kill a little bit of time. Maybe it’ll take his mind off him and distract him a little bit.” So we were on the 7th floor, which is where our cabin was. We have access to floor 7, 8, 9. You cannot go down deck to the cars once the boat has left the dock. So we were on the 7th floor.
I was walking with my dad to the elevator. My dad was a very friendly man. He would talk to anybody and everybody. He just loves to be social, even though his words didn’t make any sense anymore – just would come out as gibberish. I pushed the button to the elevator and he started talking to some man behind me. I didn’t really notice that he wasn’t still kind of with me, so I stepped on the elevator. When I turned around, the doors closed and my dad was still left on the other side of the elevator. Instant panic set in because I was going up to the ninth floor and my dad was left on the seventh floor, and he had no idea what was going on, where he was, and he didn’t understand anything anymore. So I am completely freaking out, panicking. “Oh my god, I lost my dad on the boat!”
Scott
It feels like it’s kind of the same feeling as losing a small child.
Kari
Exactly. It’s the exact same feeling as losing a child. Exact same feeling,
Scott
So what do you do?
Kari
I had to wait till I got to the ninth floor. Luckily, the stairs were just right there too, so I got off the elevator and quickly ran down the stairs back down to the seventh floor. Of course, my dad was not there. I was running around panicking, looking for my dad. I couldn’t find him anywhere, so I had to enlist a worker who I found on the 7th floor to help me find my dad. Luckily, I had a recent photo of him on my phone, so I’m like, “I lost my dad. He’s 80 years old. He has dementia. He doesn’t understand anything anymore, and I don’t know where he is now.” The worker went one way, and I went the other way. It took 15 to 20 minutes and, luckily, the worker found him wandering around on the 8th floor by the cabins, and it’s just a maze of hallways where all the cabins are.
Scott
So he must have either gotten on another elevator or took the steps to the 8th floor.
Kari
Yeah, apparently. But we found him on the 8th floor, wandering around. It was a big sigh of relief when I found him. But now I’m thinking, “Oh my God, now do I tell my mom I lost my dad on the boat? Do I not tell my mom I lost my dad on the boat?” Before we went back to the room, we made a pit stop at the canteen area so we could grab some snacks and drinks and stuff. I did go back and I did tell my mom I lost my dad on the boat. She was a little taken aback at first, but she kind of laughed it off. But yeah, it was scary because I’m like, “What if he goes outside? Or–” It was fear. It was absolute fear.
Scott
Yeah, when his behavior is so completely unpredictable. That’s the scary thing. You don’t know what’s going to happen.
Kari
Yeah, because at this point, in my dad’s dementia, he’d had it for probably, I would say, 8 years. He probably had the mentality of a child at this point.
Scott
You get back to the cabin. Was he okay for the rest of that ferry ride?
Kari
Nah, he was up and down. He would get bored. We tried to find something on the TV for him, and he would get agitated. I would take him on more walks to kind of distract him, but I made sure I had a good eye on him the whole time.
Scott
The ferry ride takes you to Sydney, Nova Scotia. There, you had, of course, the car. You get the car off the boat, and you have a 2-hour drive. Is it still daytime?
Kari
It is just starting to get dark. It was like dusk, I would say, when the boat pulled in and we were just getting off the boat. I’m not the best night driver due to vision, but neither is my mother, so I’m the better option of the two of us.
Scott
This isn’t a surprise though. I mean, you knew it was going to be getting dark when you drove.
Kari
Yeah. There are different schedules for the boat. This was the best schedule for us.
Scott
You had a 2-hour drive ahead of you to get to the hotel for overnight. How did that ride go?
Kari
It was not terrible. Got off the boat and we were driving from Sydney, Nova Scotia to Port Hawkesbury, Nova Scotia. That was kind of a good distance for us because it was kind of two hours into Nova Scotia, which got us a little bit closer to Quebec where, if we had stayed in Sydney, Nova Scotia, it would have been a 12-hour drive the next day. That’s kind of why we stayed in Port Hawkesbury – because it was getting dark. And my dad had this thing about lights moving quickly. I think it freaked him out and scared him a little bit. So this was literally the first night we had driven in the dark. I think the movement is in the motion and staying in different places, being in the car so much is kind of what set him off at this point.
Scott
And it’s already been a long day.
Kari
It had already been a long day at this point, yeah. So we had done pretty good with him up until this point, but this is kind of where it all went to shit in the hand basket with my dad. He was not too bad on the drive but, once we got to the hotel, he was starting to get really confused about what was going on. I don’t even remember if we stopped for dinner that night. I remember getting to the hotel and trying to get to bed at a decent time because we had to get up very early the next morning for our long leg to Quebec. So we did our magic pudding mix for my dad with his medication in it.
Scott
And was the medication partially designed to help him sleep?
Kari
Yes. So it was a sleep aid – a prescribed one – which is kind of a sleeping aid, plus it helps with mental disorders and stuff. There’s no real good medication for dementia. I think he had behavioral issues, so I think this kind of kept him in check a little bit, but he wouldn’t sleep otherwise. So, he had to take the pill, but the only way was for us to crush it and put it in his pudding, but we had to dilute it too. Otherwise, if he felt the granules in there, he wouldn’t eat it. So he was smart that way. He was very picky.
Scott
You got to outsmart him.
Kari
Yeah, we tried a few different things to outsmart him.
Scott
So did he sleep overnight that night?
Kari
He did after a while. He was doing weird things that night. He had gone into the bathroom and, for whatever reason – I don’t know why – he peed in the garbage can instead of the toilet, and this is where his confusion really started to show and he would just not settle. He was laying on the bed and he kept reaching for the cat. I don’t know if he was trying to pet the cat or what he was trying to do, but his hands were just kind of going at the side of the bed almost all night long, like he would not settle down.
Scott
Which means you couldn’t sleep either.
Kari
Yeah, I couldn’t sleep because I was filming the little things that he’s doing to show Dave when I got home, and also for doctors and stuff so they could see what was going on. We managed to get some sleep that night – not very much, but we got some. We had to get up at 5.30 the next morning to head for Quebec.
Scott
And this was leg 5, so this was a 10.5 hour drive.
Kari
Yeah, this stretch was 1,093 kilometers – 679 miles for you guys.
Scott
And it’s still just you driving.
Kari
Just me driving.
Scott
So you had a full day the day before, not much sleep that night, and now you’ve got over 10 hours. How did he go along that way?
Kari
It was not good at this point. We got up at 5.30. I think we left by 6 am from Port Hawkesbury. We were heading for Quebec City – that’s where we had booked our next hotel – because it was kind of a middle point, like, a good stretch between there and home. In Nova Scotia, we decided to take the cat out of the cat carrier because he was just meowing constantly and he just wouldn’t stop meowing. So my mom, for whatever reason, decided to throw the cat carrier behind the motel down a big hill. I’m like, “What? I don’t understand why you just wouldn’t leave it there,” but she thought it was funny, so she ended up tossing it down the hill. So we didn’t have the cat in a cat carrier anymore at this point either.
Scott
So you no longer have a cat carrier now?
Kari
No, we have the cat, just not in a carrier anymore. So he was roaming free around the car.
Scott
Well, that’s what I mean. She threw the carrier away.
Kari
Yeah.
Scott
Okay.
Kari
Because the cat was doing okay in the car outside of the carrier, we thought, “Okay, well, maybe it’ll be better. He’ll be quieter. Maybe it’ll keep my dad settled down because he can pet him and such.” We had the cat roaming loose in the car, and my dad was in the backseat on the passenger side. We had stopped for coffees along the way and my dad wasn’t even drinking them – he just started dumping them in his lap.
Scott
Hot coffee in his lap?
Kari
Well, not hot. It wasn’t hot at this point, it had cooled down, but I don’t know. He just wasn’t drinking. He would just dump it in his lap and then he would try and steal mine, or he would try and steal mom’s. But yeah, he just kept dumping it in his lap for whatever reason, I don’t know why. I can’t figure that part out. So his pants were soaking wet. This just kind of went on all day. He kept trying to open the car door when we were on the highway. It was so hard to explain. You could literally see him losing his mind in the back seat. The motion and everything was just way too much for him. He couldn’t handle it. He didn’t recognize anything anymore. I think that’s what was wrong. He didn’t recognize anything. Nothing was familiar. We’re always constantly moving.
Scott
And your mom was in the front seat on the passenger side, so he’s back there kind of by himself. How do you have any kind of control over that especially when you’re trying to drive?
Kari
Yeah. I’m obviously yelling at him cause I’m frustrated. The cat’s wandering around and the cat’s climbing on my lap and not on the dashboard. It was complete chaos. It was complete chaos in the car. Driving from Nova Scotia to Quebec, we also have to pass through New Brunswick. So, we have to go through another province.
Scott
So what does that mean as far as the trip? How does that affect things?
Kari
Well, that didn’t change the distance, but we had to go from Nova Scotia through New Brunswick to Quebec. This one big stretch of highway through near Brunswick was down to one lane. So, you know when they do contra flow and they make you switch to the other side of the road? So we were down to one lane on the one side of the road and the other side was where they were redoing the road but, to the right of us, it was all construction cones. My dad was making motions like he had to go to the bathroom, but he couldn’t verbally say it anymore. He just couldn’t communicate that. At this point, there was nowhere for us to pull over. We’re in the middle of a construction zone, so I had to pull off between the cones. I didn’t have a choice at this point. So the construction worker on the other side of the road is yelling at us, “You can’t park there. You can’t park there. You have to keep going.”
Scott
So you pulled off into the construction area rather than just stop in that one lane and block everyone.
Kari
Yeah, I couldn’t stay on the road. We had to pull off, we didn’t have a choice. So the construction worker was yelling at us and my mom was making the motion like my dad was throwing up or something, just trying to hopefully get this construction worker off her back. So she’s making these motions like my dad’s throwing up when, actually, he’s got to pee. So she gets him out of the car in the back seat, fiddling with the zipper, and getting him to go pee, and he is completely taking it the wrong way, thinking she’s getting randy with him, so he’s being silly–
Scott
–on the side of the road in a construction area. Okay. He’s ready to go anytime.
Kari
He’s ready to go anytime, yeah, which is amazing at 80. You think, wow, they still think that way, even with dementia, it’s crazy. The car doors are open and I’m like, “I really don’t want to see this because I could see everything.” My mom just made this comment, “I’m not trying to play with your bird.” I just started laughing because it was the most ridiculous comment. “Did you just call it a bird? really?!”
Scott
I had not heard that before. That’s interesting.
Kari
No, me neither. But she ended it. It took a while, but she finally got him to go pee on the side of the road. The construction workers are still yelling at us at this point to get out.
Scott
Well, at least that was a little bit of success, though. He was able to pee and you could proceed.
Kari
Yep. We drove through there. You could tell he was losing his mind at this point. He was just doing weird things and he was very fidgety in the backseat. Like I said, he kept trying to open the car door and take the seatbelt off while I was driving at, like, 100 kilometers an hour at this point, so it was scary. I’m yelling at him to keep closing the door. He’s just not understanding or getting anything. He’s completely confused as to what’s going on.
We finally got to Quebec. It was about 5.30 – 6.30 at night. We got to Quebec City. My dad was completely out of it at this point. He was almost uncontrollable. We got our stuff into the room and we were all hungry at this point. I remember we went to a restaurant and, of course, French-speaking, we’re in Quebec, so we were trying to order off the menu and my dad is just being silly, so we ordered him a Coke. He had this Coke on the table and he just kept playing with it and playing with it, and I’m like, “Dad, stop playing with it. You’re going to knock it over,” and he got mad at me because it’s almost like you were scolding a child. That’s how he would react – like he was getting in trouble all the time. Well, of course, he knocks his drink all over the table. People at the next table are looking at us, and my dad’s basically having a temper tantrum at the table. We managed to get some food down. My dad had started this thing the summer when we were there. I don’t know if he thought it was gravy or what, but he would pour his drink on his plate on his food, and he was trying to eat his dinner with a straw instead of his fork, and people were staring at us. People don’t understand what’s going on. We left the restaurant and my dad was mad. He was mad. He was yelling and carrying on and making a scene and everything. So, we’re like, let’s just go back to the room and, hopefully, he’ll settle down.
We got back to the room. We gave my dad his meds and his pudding. My mom, thinking we were settling down for the night, decided she was going to take her sleeping pill too. My mom was laying in the bed and she was almost asleep, but my dad just would not settle. He would not settle. He was up and he was down. He was up and he was down. He went into the bathroom and tried flushing an entire roll of toilet paper down the toilet and clogged it. it was overflowing everywhere, so I had to call the front desk and they had to come and fix it for us, and I’m just like, “I’m so sorry. I’ve been trying to explain to them about my dad, and he just didn’t understand.”
I tried to get him to settle down and he wouldn’t settle down in bed and he just kept jumping up and wandering around. He would lay down and he would jump up and he would wander around. It was 9.30 at this point. It’s almost like they fight the medication. It’s hard to explain but he would fight it in the end, like he just would not give in to the medication. If any normal person took this medication, you would be out cold, and my dad just would not go to sleep. We couldn’t control him, so I just suggested to my mom, “Look, at this point, let’s just pack it up. I’ll drive through the night and we’ll just get home.” I just wanted to get home. I was so tired. I was so worn out. I was so exhausted. I was really upset about my dad. It was a lot.
Scott
It sounds like just sensory overload.
Kari
It was, yeah.
Scott
Just overwhelming – the exhaustion and frustration. And you’ve still got an 8.5-hour drive to get to your house without even sleeping that night. You’re just going to drive through the night.
Kari
Yeah, I’d been up since 5.30 that morning. I’m like, “Let’s just drive through the night. I just want to go home.”
Scott
Are you some kind of superwoman or something? I mean, anyone else would just pass out exhausted.
Kari
I don’t even like driving at night and I have never been up that long, let alone behind the wheel of a car. It was just so frustrating being in the hotel with him. We couldn’t. I’m like, “The neighbors, people in the next rooms are going to hear us.” He just was yelling and just carrying on. I’m like, “We can’t stay here. we just got to go.”
Scott
Yeah, regardless of how tired you are, you really had no other choice. No, you couldn’t do anything other than just see if we can just get home.
Kari
We had to get to where we were going. That’s the best we could do. So we packed everything up again and got into the car. It was maybe 10 – 10.30 when we got back in the car and hit the road again. So we had to drive from Quebec City. We had to drive through Montreal in the middle of the night. I thought, “Well, maybe he’ll settle down in the back seat. Maybe he’ll fall asleep back there.”
Scott
Yeah, he must be exhausted too.
Kari
You’d think. No, not at all. He was the opposite. He was completely wired. He would not sleep. He was up the whole night. My mom obviously had taken her sleeping pills, so she fell asleep in the passenger seat, so she was of no use to me and my dad was in the backseat literally losing his mind. Like I said, he was opening the car doors in the middle of the night, undoing his seatbelt, pouring drinks all over himself, and he was rooting through my purse that I had kind of stuffed beside me. He was rooting through my purse, taking everything out. He had a shaving bag which I guess he’d found in the backseat somewhere- a turquoise-y color shaving bag – and it had toiletries and stuff in it. He had taken everything out of it and he put it on his foot, thinking it was a shoe. So, he had this blue shaving bag on his foot like it was a shoe, and he had a towel over his head. I got pictures of these because I thought nobody would ever believe me. I got to get some of these pictures thinking hopefully people will believe me and stuff. So, I do have a picture of him with a little towel on his head, and you can see he’s fiddling with the shaving bag that he had on his foot. This just went on all night long. My mom’s out cold in the passenger seat, and I’m yelling at my dad to close the door, to stop opening the door. You’re going to let the cat out.
Scott
Right, the cat could jump out the door or out the window.
Kari
Yeah, and he’s poking me in the back of the head and everything while I’m driving. He’s just out of it.
Scott
I’m thinking that, for you, this has to be so frustrating, just trying to get home. It’s got to be so sad for you to see your dad like this.
Kari
Yeah, it was hard. I literally watched my dad have a mental breakdown from Newfoundland to Ontario in the backseat of the car. It’s one of the most traumatizing things I’ve experienced. I haven’t talked about it a lot in the last three years. It’s very sad seeing somebody you love so much disappear in front of your face.
Scott
That’s what dementia does.
Kari
Yeah, I wouldn’t wish it on anybody. It’s horrible. So we were driving and this carried on all night, like I said. We got to Ontario at dawn-ish. I don’t know if you’ve ever been to Toronto or whatever, but Toronto has the Highway 401, and it’s one of the biggest in North America, or Canada maybe, but it’s one of the busiest. It goes all the way across Canada. You can take it from one side to the other. It’s also known as the TransCanada Highway. When you’re going through Toronto, you’re kind of going through the gauntlet of the busy area. So there’s nowhere to pull over at all because – you’ve got collector’s lanes, you’ve got the express lanes – of course, I was in the express lane, so all you have is concrete barriers on either side of you. Even at 6 o’clock in the morning, it’s busy. My mom had kind of woken up at this point.
My dad was saying he had to go to the bathroom, but there was nowhere for me to pull over. There was nowhere. I could not pull over at all. So, he ended up peeing in his pants. His pants were already soaked to this point with drinks and coffee and pop, and then he peed in his pants, so my mom was kind of leaning over the seat in between the two seats trying to get my dad’s pants off him while I was driving on the highway in Toronto. She managed to get his pants off. We had a blanket back there, so she tried to wrap the blanket around his waist to kind of cover him up because he had no underwear on either. Here is my dad sitting in the back seat with his blanket wrapped around him, a towel on his head, and a shaving bag on his foot, like a shoe. This is where I made the decision that I had to take my dad to the hospital. There was no way he could come home in this condition because he was just completely out of his mind.
Scott
How close were you at this point to being home?
Kari
Toronto to Georgetown is about a 40-minute drive, depending on traffic. That time in the morning wasn’t too bad. I think we made it to Georgetown Hospital in 40-45 minutes. I pulled up at the emergency in Georgetown and my mom got my dad out of the backseat of the car. He had this brown blanket wrapped around his waist, this shaving bag on his foot, like a shoe, and I got a picture of my mom walking my dad into the hospital and he had no idea what was going on at all. I kind of just had a moment of pause for a minute because I was so tired and so exhausted from everything that I had experienced in the car. I had to call Dave and tell him what was happening and I was just bawling on the phone. Just bawling. I was so tired and I was so upset.
Luckily, it was only a 15-minute drive from the hospital to my house in Acton. I got home and I pulled up in front of my house on the street and I just kind of sat there. Dave came out and greeted me and I was just so upset. I just literally crumpled in his arms. It was so hard and upsetting. I was so sad. I was just so tired. That’s just not something you think you’re ever going to experience – watching that happen to somebody right in front of your face. I mean, the whole point was I just wanted to get to where we’re going. Dad didn’t really make it to my house.
Scott
At least he’s at the hospital, he’s going to get taken care of.
Kari
Yeah, I could not bring him to my house in his state. There was no way. You just could not control him at all. He was just completely out of it. So they sedated him at the hospital. Emergency being emergency, they’re like, “Well, we can’t keep him. There’s nothing we can do for him.” So they called us and we had to go pick him up. He was heavily sedated. So here we are. We had to go pick him up and Dave was with me this time. We had to get him into the car and it was completely dead weight, and he’s still not sleeping, he’s still awake, just refusing to sleep. My dad would not sleep. It’s crazy.
Dave, my husband, is a big guy. So Dave managed to get him into the car and he was in the back seat. We drove to Acton and we had to stop at the drugstore for my mom to run in and pick up medications for herself and for my dad. I was in the passenger seat and Dave was in the driver’s seat. My mom had been sitting in the backseat with my dad. My dad was still in the backseat when my mom ran into the store. I don’t know what my dad was thinking. For whatever reason, he just did this big hork and spit on me and Dave from the backseat. He just spit all over us and we were, like, really taken aback. That is not something my dad would ever do in his right mind. He would have been absolutely mortified, if he knew he had done this. It was, like, all over us, and we’re covered in my dad’s spit.
We managed to get him home to my house. Our house– you have to climb ten steps to get up to our front door, so Dave was trying to get my dad up. We managed to get my dad into the spare room, which was on the main level. My dad had been there for a couple of minutes and then we were like, “Well, maybe he should go to the bathroom.” So Dave and my mom tried to get my dad on the toilet to go pee. He was not budging. He was squatting over and he was tensing every muscle in his body. He just would not give in. He was refusing 100%. Again, he thought my mom was trying to play with him. This is where his mind kept going.
Scott
Well, he is a man.
Kari
I know. She kind of kept batting his hand away because he kept trying to put her hand down there. Dave was like, “Oh my god.” He didn’t know what to do at this point. So we just brought him back into the room and we laid him down on the bed, hoping he would just kind of lay down and chill out and have a sleep because we didn’t know what else to do with him at this point. We kind of closed the door and, a few minutes later, we heard a bang from inside that room. He tried to stand up on his own and had fallen down because he was so heavily sedated, but he had fallen down right in front of the bedroom door, so we couldn’t even get the bedroom door open.
Scott
So he had it blocked by his own weight from the inside.
Kari
Yeah, he was just laying down on the floor and could not stand up. We’re like, “Well, we can’t keep him here. This is insane. Why would they send him home in this state? There was nothing we could do with him.” So we’re like, “We have to call 911 and they have to come get him.” So I asked my husband this question the other day, “Dave, who called 911 that day for my dad? Because I could not remember if it was me, if it was Dave, or if it was my mom or my daughter. I could not remember.” He says, “I think it was you,” but I do not remember making that phone call. Apparently, it was me and that’s just something I blocked out. I can’t remember it.
Scott
Yeah. After all you had been through for this whole past few days and lack of sleep and everything, it’s not surprising you would not remember a phone call.
Kari
No, cause I still hadn’t slept at this point. I was still awake. Yeah. Dave said, “You called,” but I don’t remember calling.
Scott
So they show up.
Kari
They show up. We managed to get the door open and the EMS helped us get my dad on the bed, but he was just kind of out of control, resisting and stuff, so they had to put my dad in a wheelchair and they had to put a restraining jacket on him to get him out and to take him to the hospital because we were afraid he was going to hit somebody. That’s how out of control he was. My dad was not a violent man in any way, shape, or form. My dad was a very gentle, loving man.
Scott
At this point, you really have to think that this person– he’s your dad, but he’s not really your dad anymore. I mean, it’s not who he was.
Kari
No. They ended up taking him back to the hospital and we refused to bring him home because we’re like, “We cannot take care of him. There’s no way we can take care of him.” The doctor was mad at us because we wanted to keep him there. The doctor was literally getting mad at us, and we were like, “Well, how are we supposed to take care of him? We can’t take care of him. He needs care. He needs full-time care. “
Scott
Was the hospital saying that they couldn’t provide the care that he needed?
Kari
At this point, I think they just thought of it more as a burden and that he didn’t really need to be there. But after I explained the story to them of the drive, where he came from, and what had happened to him, they kind of relented and kept him at this point. So they kept him in the hospital care for a few weeks and tried different meds to try and get him stabilized. He was kind of out of it for about a week or so. He slept most of the time. They kept him there for three weeks and then they moved him over to the CTC side, which is called Continuing Transitional Care. I call it purgatory because you’re kind of in limbo. You’re not really in the hospital, which is not anywhere else either.
Scott
So it’s more of a long-term kind of thing?
Kari
No, it’s temporary until they could find him a long-term home.
Scott
Oh, okay.
Kari
So yeah, he was in limbo land for about eight months. They kept him there because they just had no long-term care available because we kind of wanted something that was kind of close to us. Finally, something opened up in Guelph after eight months. So in May of 2022, he moved into St. Joseph’s long-term care facility in Guelph. He had to go into the behavioral unit because of his outbursts and he got handsy and stuff like that. It’s just like a hospital floor with nothing out. He was there for a year. It’s funny because he always knew who I was and he always knew who my mom was, but he didn’t know anybody else. He didn’t know my husband. He didn’t know my daughters. He didn’t know his other grandchildren, my niece and nephew. He didn’t know who anybody was, didn’t recognize anybody except me and my mom. He would always smile when I would come in and see him, but it was hard. It was hard to go see him.
Scott
What made those visits difficult? Anything specifically? I mean, you could see that he wasn’t himself, obviously.
Kari
He was always happy to see me or my mom, but he would walk around a lot and they had a tendency to kind of walk into everybody else’s room. They all thought everybody’s room was there.
Scott
Well, they all kind of look the same, right?
Kari
They do. But yeah, they would all just walk into each other’s rooms and take everybody else’s stuff. My dad had this little orange and white cat that looked just like his cat, and he thought it was his cat, but it wasn’t a real cat, obviously.
Scott
Oh, it was a stuffed animal, okay.
Kari
Yeah, but it looked like it was sleeping, laying down, and it was kind of hard to the touch, but it had soft fur, but my dad thought it was his cat. So that kind of kept him happy. He would wander around and then I would say, “Dad, don’t go in that room. That’s not your room.” And he would get mad. So then I’d say, “Okay, well, if you’re going to be like this, I’m just going to go home then.” And he would get mad that I’m leaving. So it was a vicious cycle all the time of having to see my dad.
There was one time he got really mad when I left and their doors were locked. He couldn’t get out of that ward. He had to use a code to get out and he was mad that I was leaving. He actually put his hands on me, grabbed me, and was screaming in my face saying, “I’m going to kill you! I’ll kill you!” That’s not my dad at all. My husband, Dave, had to get in between us both to kind of protect me so I could edge out the door. As we got on the other side of the door, he was banging on the window, still screaming at us. It was just heartbreaking every time I had to go see him. It was so hard. It was so hard. He was there for exactly a year and he passed away on May 11th of 2023. He just stopped eating and stopped drinking. His body just said no more. His mind just forgot how to do things, can’t even do the basics anymore. It was a blessing. I wouldn’t want anybody to live like that, and I know he wouldn’t have wanted to live like that.
Scott
But it’s kind of an interesting situation. He’s not on life support where you could make the decision to turn that off. He’s just misbehaving a lot, not really knowing what’s going on. You mentioned that you feel guilty for having them make that traumatic trip with you. Where does that guilt come from? You were doing what you thought was the best for them.
Kari
I was, and I thought it would be best for them to come here, but I also think on the other hand, maybe if I didn’t make that long trip with my dad, he may not have gotten the way he was to that level. I mean, obviously, it was inevitable he had dementia. You can only live with that for so long before your brain starts to shut down. But, I sometimes feel guilty that I pushed him into it by bringing them here. Was I being selfish and bringing him here because I wanted to see my dad before he got really bad? My kids wanted to see him. My niece and nephew wanted to see him. On the other hand, I think maybe he would’ve been better off in Newfoundland. I don’t know. It’s one of those “I wish” scenarios,
Scott
But you can only make a decision based on the information you have at the time, and you were thinking that was the best thing. How’s your mom doing now?
Kari
My mom still lives in the apartment in our basement. We’ve had a lot of things happen. It’s not easy being an adult living with a parent. We’ve had a lot of issues and we currently do not have a relationship even though she lives in my house. It’s been tough. I’ve actually had therapy over it. It’s been tough. I lost my dad and my mom all in the same year, essentially, both in different ways. Along with dealing with my dad, I was dealing with his other sister, my aunt and uncle. They lived up north. They never had kids, so I was their power of attorney. They were failing in health, so I was also taking care of them at the same time my dad was in the hospital, and trying to go see him. So that year was a bad year. I ended up losing all three of them in six months. As far as my mom, I don’t know what the future holds. I don’t completely close that door, but there’s also been a lot of things that I don’t know that are fixable. It’s a tough call. It’s a very tough call.
Scott
It sounds like that could be a whole other conversation.
Kari
It is. It’s a whole other story. It’s crazy.
Scott
What’s your advice for anyone dealing with a loved one who has dementia?
Kari
First off, don’t argue with them because it’s like you’re fighting with a five-year-old, literally. It’s like you’re arguing with somebody who doesn’t understand. So as frustrating as it can be– and yes, you can lose your patience. It’s very easy to get frustrated and not have the patience to deal with somebody in that situation. Just take it one day at a time and enjoy what time you do have with them because you literally watch them vanish before your eyes and there’s nothing you can do.
Scott
What’s your favorite memory with your dad?
Kari
I don’t have just one. I love my dad so much, and I miss him a lot. I just remember him taking me fishing as a kid and cuddling with him in his chair. My last best memory of my dad is, six months before he passed away in the nursing home, me and my husband were visiting him and we were about to leave and I’m like, “Oh, I forgot my purse in your room. I have to go get my purse.” So Dave stayed with my dad. I started to walk away from my dad and he yelled out my name, “Kari!” That’s the first time he said my name in years, anybody’s name. It was just one of those moments like, “Oh my God, my dad just said my name.” It was just one of those heartfelt moments that is just one of those lasting things with me. It was probably just a memory, almost like muscle memory. It just clicked into his mind cause I was walking away from him, but it was just that special moment in a time when there weren’t any anymore.
Scott
A little glimpse of him as he was before maybe.
Kari
Yeah, he was a good man. Just cherish what you have and just try to remember them for who they were and not who they are at the point of what you’re going through because you do tend to get lost in their illness as well. It’s not just hurt on them, it’s hurt on everybody. As a child, watching your parent disappear year by year is a hard thing, but you just got to keep them alive. Remember who they were.
Scott
Kari also told me that she has taken advantage of having therapy over the past few years to help her process what happened on that trip and afterward. You can see pictures of Kari and her parents in the episode notes at WhatWasThatLike.com/204.
And she’s also in the Facebook group – so if there’s something you want to ask her that I didn’t think of, or if you want to just comment on the story you just heard, you can do that there. Just look for the post with this episode title – Kari’s dad had a dementia breakdown – in the podcast Facebook group at WhatWasThatLike.com/facebook.
And if you’re in that group, you know the current question that we posted that everyone is answering now is this: What did your boss do that made him or her the worst boss ever? So if you have a terrible boss story, come on over to the group and tell us about it!
Also going to play this voice mail that came in. And this one is kind of interesting – most of the time voice mails are like “yeah I just listened to this episode and I wanted to say…” you know, a comment or something. This person listens to the show, but just wanted to remind everyone to be aware of child predators.
Lexi
Hi, Scott. My name’s Lexi. Just recently, I found out that my high school history teacher was arrested for having 14 counts of child pornography. I was just calling in because, when I was in high school, I was in his class and he was the coolest teacher. He was very chill and very nice. He didn’t come off in that way at all. He was also targeting boys. I didn’t really get that side of him but he was just a really good teacher. So, it was just extremely shocking to find out that he was doing those things. By the way, his name is Drake Sherman. I am totally fine with putting him on blast because I think that child predators do not deserve any sort of protection. To everyone out there, be aware, stay alert of your surroundings and the people that teach your children. Just beware. It’s crazy, but have a good one. I love the podcast.
Scott
So yeah, you can call in and say something about the podcast, or anything else if you think it might be useful or entertaining. The podcast voice mail line is open 24/7, and it’s never answered by a human, so you can call anytime you want. That number is 727-386-9468.
And I also want to give a big shout out to a specific listener, Janet – she actually listens to the podcast on the website, which is not something that’s very common. But – because that’s where she listens to the show, she was able to discover some problems with the website audio files and she let me know about that so that I could get it resolved. So thanks very much Janet, I really appreciate it!
Graphics for this episode were created by Bob Bretz. Full episode transcription was created by James Lai.
And now we’re about to hear this week’s Listener Story. This is what comes at the end of every episode – an audio story, around 5-10 minutes long, sent in by a listener just like you. We’d love to hear a story from you! Just record it on your phone and email it to me – Scott@WhatWasThatLike.com.
This week’s story is about a scary situation with a tornado.
Stay safe – and I’ll see you next time.
(Listener story)
December 9th, 2023 started out like any normal Saturday for my family. We all had various plans. The weather was mild and it was overall just a nice morning. It was getting close to Christmas, so I had ordered some Christmas cards from Walgreens. My husband had work at the post office, and my oldest was headed to Greenville, Kentucky with his girlfriend for a go kart race. My plan for the day was to pick up the Christmas cards, go to a Red Cross blood drive, and then drop my youngest off at a sleepover. He begged me to let him stay home while I ran my errands and then took him, but I just didn’t want to leave him home all alone.
We left the house around 11 a.m. and headed to Walgreens. We chatted a little bit on the way while listening to the radio. As we pulled into the parking lot to pick up the Christmas cards, a weather update came over the radio. They said that the forecast called for some storms in the afternoon. They said there was a chance for heavy rain, some wind, and that they couldn’t rule out an isolated tornado. My son asked, “Mom, what’s an isolated tornado?” I told him it was really nothing to worry about, just a random small tornado that could come up in a field or something, but they didn’t last long and wouldn’t really cause any damage. Boy was I wrong. We picked up the cards and talked about how good they turned out as we drove to Charlotte, Tennessee for the blood drive.
Anytime we go to Charlotte which is about a 45-minute drive with light traffic, we make sure to stop at Sweet Charlotte, a cute little soda shop, for lunch. After I donated my pint of blood, we headed there. As we were finishing our lunch, I got an alert that a tornado was spotted in Indian Mound, heading in the direction of Clarksville where we live.
My husband is a mail courier and I knew he’d likely be delivering mail in packages, so I called him to give the heads up to be careful and to find somewhere safe to take cover if needed. I was shocked when he answered the phone and he told me that the tornado was there and they were running for the storm shelter inside the post office. I thought, surely, it wasn’t actually hitting the post office. He said he had to go and then he called me back. Trying not to panic and scare my son, I offered to stop at the little country market down the street from where we were. It wasn’t even raining where we were. So I thought it best to hang tight for a few minutes and make sure the weather cleared.
Then I got a text from my oldest, the one who had gone to the go kart race in Greenville. Greenville is about an hour from home in the opposite direction – almost two hours from where I was at the time. His text said, “Mom, they’re saying there are funnel clouds over the arena. We are hiding under the bleachers.” At this point, panic set in. I quickly got myself and my youngest in the car and we headed toward home. I called my oldest and he said they were okay for the moment, just hiding under the bleachers and he’d keep me updated.
Then I called my husband to check on him. It kept going to voicemail. My youngest got scared and thought we’d get hit by the tornado, so I kept trying to keep him calm and stay calm myself. I called my sister and she tried to help me to call my husband. Neither of us could get through. Finally, about 20 minutes later, I got a text from my oldest that they were getting the “all clear” at where he was and that he was okay. It was a huge relief.
Still, about 30 minutes from home, I kept trying to call my husband. Still nothing. I kept calling and kept going to voicemail. I called my sister in tears, begging her to tell me he was okay. She said that he’s likely fine and that the cell towers are probably just jammed, which made some sense. She stayed on the phone with me as I got a bit closer to Clarksville. The sky seemed to clear up a bit, which helped to calm my son.
As we got into Clarksville, I tried to call my husband again. Still nothing. I was on the phone with my sister as emergency vehicles went flying past me in the direction of home and the post office. Side note, we live less than five minutes from the post office. So I was heading towards both. I tried to call my husband again, and again, it went to voicemail. My sister tried to reassure me that the cell towers were probably just knocked down. Then it hit me that I was still on the phone with her and I was only about eight minutes away at that point. She and I both started crying. I got to the light before the light at the post office. My light was at the top of the hill and the post office was at the bottom, so you could see it. I could see emergency vehicles everywhere. I told my sister I had to go, and then I lost it. I was so scared that I had just lost my husband. Reminding myself that my son was in the car, I tried to wipe my tears away, and I said, “Let’s go home and make sure the dogs are okay.”
I didn’t even think about how our neighborhood had fared. As I went to pull into the neighborhood, there were emergency vehicles all over. We couldn’t get to our house. Panic returned for both my son and I. We couldn’t get home because of all the vehicles blocking the streets and power lines and trees down. That’s when I decided to carefully turn around and take one of the unblocked back streets back towards the post office. There was a back entrance to the Sonic on that street and the intersection for the post office was just diagonal from there. I pulled into the Sonic and I parked my car. I told my son to stay there and that I would be right back. I wasn’t thinking quite straight, but I told him I was going to walk across to the post office and get dad and I’d be back.
As I started to open the door, my phone chimed. It was a text from my husband. He said, “I’m okay. Post office hit. My truck is damaged, but I am okay. Calls not going through. Love you.” At that moment, I could finally breathe. I slowly made it back into our neighborhood, half of which was destroyed but, by the grace of God, our street and our house was safe. We didn’t have power, but we didn’t care. We spent the next days helping folks in our neighborhood who lost their homes in the unexpected EF-3 tornado that hit Clarksville on December 9th. I’ll never forget how scared I was, nor how lucky I am, to have my husband and my kids safe at home with me.