Season Two: Episode Three

Transcript

Mariko Sakamoto 0:00

This is Call to Mind, audio diaries of love and memory loss. I'm Mariko Sakamoto, assistant professor of nursing at the University of Victoria, and host of Call to Mind. This podcast series is a deep dive into the experiences of caregivers. It's about the importance of being heard and being listened to. Here we bring you intimate audio diaries recorded by caregivers of family members living with Alzheimer's and other forms of dementia.

Lana-Michele 0:32

I think we always have to live our best life, no matter what that is, just we have the moment and we gottta make the most of it.

Mariko Sakamoto 0:42

They say it takes a village, and when it comes to caregiving for a family member with dementia, sometimes it takes a big family. Lana, Michelle and her dad, Ren, live on a ranch by a lake in rural BC, with her large family. She considers herself lucky to have family support and be able to afford extra care for Ren. Lana Michelle's story is about the pressure to create the best life for an aging parent and finding the right balance between encouragement and acceptance.

Lana-Michele 1:16

I am caregiver for my father Ren. He's been living with me in my suite for the last three and a half, nearly four years after suffering multiple injuries in a car accident. He spent a month in the hospital, nine days of that intensive care in an induced coma, very unsure whether he was going to survive or not. At the time, we didn't realize how much his memory loss had progressed. He's always been a forgetful kind of person, and so when he had had some weird episodes of not being able to find his way and being forgetful, we didn't pay too much attention to that. After coming to live with me, it became apparent that there was more going on than his physical injuries. And then he had a brain scan and a neuropsychological assessment and there was definitely signs of Alzheimer's present. He was diagnosed with vascular-related dementia as well as Alzheimer's.

Lana-Michele 2:23

[Horse whinnies] So this morning, I'm working on getting him up. I'm going to go down and check on him now and just see if he's had any success in staying out of bed this time, I usually have to go down half a dozen times. And we got his music on, we're gonna try and see if he's up. So checking in with dad.

Lana-Michele 2:51

Dad, you're doing okay? You getting ready?

Ren 2:55

Right? It's pool day today. Tuesday.

Lana-Michele 2:58

Okay? So yeah, not a lot of progress. He's up, but he is hasn't, hasn't got his clothes on, or hasn't made the next jump that he needs to make. So he really does enjoy himself once he gets up and moving. It's just a real hard, slow challenge in the morning.

Lana-Michele 3:33

My father, Ren was an educated man. He was a elementary school teacher until the age of 70, when he was forced into retirement. So yeah, he's had a busy, productive life. Always been involved in social causes and the political scene. Think it was really frustrating for him to lose that independence after his car accident. So we're living in the moment with him.

Lana-Michele 3:59

[Horse whinnies and hear footsteps walking outside] We live rurally. We are up in the mountains a little bit. So we have a little horse ranch. Here we have animals, my four grown kids. They all live at home here with me. Still. When they're home, they're very active, and they help out with their Papa quite a bit. [Background sound of dishes clattering and family table sounds continues through next clip.]

Lana-Michele 4:27

yeah, we are doing what we can to get him out there, get him active. He's sleeping more and more. It's a bit of a struggle and sometimes a bit of an argument getting up in the morning. Today, he got up a little bit quicker knowing he had someone coming to get him at 10. He wasn't as bothered by me getting him up and bugging him as he says. But when we don't have any scheduled activity, it's almost impossible to get him out of bed. So that's been our struggle lately, is trying to get him up and trying to get him moving, trying to use that brain and use that body, which is riddled with arthritis. So he's got that compounding the effects of the Alzheimer's and the dementia. So we're trying to battle that and trying to give lots of opportunity to engage him in different things. One of his favorite things is eating. So we can usually get him up if there's a meal ready. And he also really loves music.

Lana-Michele 5:29

It's been a bit of a struggle today. The weather hasn't been great, and there's nothing scheduled for for Ren, my dad, to do so he is struggling to get out of bed and stay out of bed, so it's been a slow day for for me. Overall, this week has been a pretty good week. He was able to get out with his care aide, which was really good for me, because it allowed me to get away and do some self care myself and spend the day with my family and my kids, and we went rock climbing. So that was awesome. And then dad got to his aqua therapy on Tuesday, which is always a good thing. Today's been a struggle, but I have to remember that the rest of the week was pretty good. It's been hard for me to to get a real idea of what to expect. I think everybody's different, but sounds like vascular dementia and Alzheimer's can can affect the person quite differently, and he's got the both of them. So, yeah, just trying to try to figure out, I spend a great deal of time trying to think of things for him to do and hope that he's living his best life and happy, and I know it's important for him to remember birthdays and things like that, so trying to remember birthdays for him, for myself, and get him to make phone calls. And sometimes I'm forgetting about my own life, it seems. But you know, it's okay. It's that that's okay because I I'm in a situation that hasn't really affected my life, my day to day, as much as it would somebody who had to move away to care for a friend or a family member, he's come here to live with me in my life, and we've tried to incorporate as much of that to suit him. You know, I was self employed, and my schedule is flexible, and so it's been okay, especially with the addition of his care aide and my sisters, who moved from their locations to be closer to us so they could help out as well. We're really fortunate. Dad's really fortunate. He's got a lot of people love him and and the family's really stepped up. Brother and sister come up to see him and spend time with him, yeah, day by day, got to remember day by day, and gotta just be thankful for what we are able to do. And just takes a couple smiles from him, so.

Lana-Michele 8:06

We had a busy day around the ranch here, lots of different people coming and going and tried to get my dad engaged somehow in some of the things that were going on. Just was frustrating, because every time we got him up, as soon as I turned my back and went to do something else and came back to check on him, he was back in bed sleeping again. So really frustrating day. It's not unusual when he doesn't have things to do, he tends to just sneak back to bed again. Just doesn't seem to be too engaged in things that he normally used to be. doing his own thing with gardening, reading the book. None of those things seem to happen anymore. You'll get up and watch some news, but that's about the extent of what he'll do. And if somebody's around to play crib, he'll he'll jump to that opportunity. That seems to still entice him into participating. So yeah, bit of a frustrating day. I worry that maybe he'd be better in some kind of an environment where he had other people to engage with more often. But then I worry about that too, because I'm afraid that if he ends up in a care home, he'll forget us all. So may

Lana-Michele 9:22

be it's a bit selfish, but that's what I've been told, is that to try to keep him in his family and normal surroundings as long as we can, because typically, it's not unusual for people to lose their memory faster when they end up in care home situations. I don't know if that's 100% true, but that's what I've heard from from others. So he seems to enjoy being here. I'm just going to do a check in and see if that's changed or what other thoughts he has. I.

Lana-Michele 10:05

[Sound of TV News] Hey, Dad, OK if I just turn the TV off for a minute, just so we can check in with each other.

Ren 10:12

Yeah [News turns off]

Lana-Michele 10:18

You having a snack?

Ren 10:19

Yeah? No. What's up?

Lana-Michele 10:21

I just wanted to check in. We were checking in earlier about just health and you being here, and what, what you've been involved in, and that sort of thing. So just checking in with you

Ren 10:33

Haven't been involved much,

Lana-Michele 10:36

yeah. So what kinds of things would you like to be involved in?

Ren 10:41

Being kind of interesting to find out what was involved in politics up there.

Lana-Michele 10:47

So you'd like to get involved in politics?

Ren 10:48

Well, I'd like to find out more about it up here. Just find out who's involved and what point of view they have, all that kind of stuff.

Lana-Michele 10:58

Okay.

Ren 11:00

There just 23 NDPers up here, but it's a rural area, so probably fewer NDP

Lana-Michele 11:08

Dad's still really focused on his previous interests. Of course, wanting to get on the NDP campaign. He's a lifer NDP. He used to be very involved in his area, but he's unable to formulate lists and follow through with jobs, so he wasn't able to do that anymore. So we're maybe just trying to keep him updated in current news. Kamloops is not an NDP town, so it's hard for him to get connected in even a small way up here.

Ren 11:45

Okay, so aside from politics, what other things?

Ren 11:48

That's a good place to start doing so,

Lana-Michele 11:53

But in terms of keeping you healthy and keeping you moving, what kinds of things would be beneficial?

Ren 12:05

Anybody around here do curling?

Lana-Michele 12:07

Well, not this time of year, but there is curling, yeah. Right now, actually, the seniors group that we went to down at Riverside Park that play games and crib and things, they're actually doing some lawn bowling. You used to bowl right?

Ren 12:29

Something to look into all right.

Lana-Michele 12:32

What about just like day to day? Like things that like are a little bit easier to do on a regular basis, because you need to be active every day.Yeah. So we've talked about that quite a bit, but we seem to be having a hard time getting getting that going.

Ren 12:56

Just leave the garden tools outside my window when I spot them I'll figure out okay, this time.

Lana-Michele 13:02

He's brought up gardening again, wanting to do more gardening. So I'm trying to get his carry to maybe focus just one of her days that she's here, if the weather cooperates, doing a little bit of gardening. Independently, he just doesn't do it. So it's kind of sad. He looks out the window and says he wants to do these things, but unless I'm there doing it, essentially, he he doesn't get it done. So we're kind of stuck on rewind and restart with that conversation. So that's another thing that came out of our check-in discussion.

Lana-Michele 13:40

I'm gonna head to bed. It's 10 to 10, so I'll check in. I've given you your night beds already. You're just gonna watch a bit of news and then head to bed.

Ren 13:49

Yep, have a good sleep.

Ren 13:50

Yeah, you too. A proper sleep so you get up at nine o'clock. Okay. Okay. Can I down? Do you want me to turn the news back on. [TV news sound and then door shuts.]

Lana-Michele 14:04

I find myself thinking about my dad. He does come across as this, but it hasn't progressed that far. But if you check in with family members and people who know him, or if you have a conversation with him within the first minute or so, you can tell that he's a lot farther along than than meets the eye, initially. Things are are progressing, and we keep being told that there's just no way of knowing. They can't predict a timeline and and things like that. Just been thinking a lot more about that. I have to say, my dad doesn't initiate anything. Everything is prompted. Sometimes he's really it is neat to hear his sense of humor, though. But as far as his day to day stuff goes, he doesn't get out of bed if he isn't prompted. He doesn't get dressed, he doesn't do anything without being prompted. I kind of feel that frustration. It's just hard to see somebody who was fiercely independent, kind of wait for your lead all the time.

Lana-Michele 15:16

Yeah, it would be really hard if you were on your own trying to do this, I'm really fortunate that I have my family. He gets a look on his face when he's standing in a space and doesn't quite know what's going on or why he's there, and it's just a look of confusion, not distress, particularly, but confusion. And then when he sees somebody he recognizes, he just lights up. Sense of relief on his on his face, yeah. And he tries to, he tries to just kind of go along with things. Doesn't complain. He doesn't really, I think he's in, in denial a little bit about the Alzheimer's, or, I'm not even sure if that's the right way to put it. I'm not sure. I'm not sure what's going on, you know? And I guess so long as he's happy to be there, and he's in the moment, he's still willing to get out and do things, and I know that that's not the experience that some of my other friends and other family members have had with their loved ones with Alzheimer's. I guess mentally, it's quite fatiguing to be taking in all different kinds of things at once. So his stamina is actually not very good. You can see a change to his face, he kind of shuts down after a while. He really needs to close his eyes and go to sleep and rest. After a while, he just can't take in any anymore. And honestly, he doesn't remember anything that's not really exactly in the moment. As soon as we start another sentence, or we move into a different room or location as we're driving, he has to keep asking me where we're going, what we're doing, because I guess the scene is changing. He just he cannot remember where we're going and what we're doing, I can repeat it sometimes just over and over and over and over again with even less than a minute in between. So he's not really, you know, as high functioning as he might appear at the beginning. And some of the things we do with him. Maybe some people might think it's a bit much, but so far, he seems to be loving the moment and living in the moment, and we're gonna just keep doing that until it looks like it's something that he he just can't manage anymore, and we'll break things down into little smaller pieces, I think. But until then, we'll, we'll keep on living, I guess, as much as we can so,,, because there will come a day when that stops, and that's going to be really sad for everybody.

Lana-Michele 18:26

He's just very confused. But honestly, when I think back, what sparked it was when he woke up. I didn't have his whiteboards organized. I hadn't got them ready yet with the dates and times and his schedule and what he was up to for the day, where he was all those kinds of things details on his whiteboard. So when he woke up, he went to the bathroom earlier than he normally would get up. And I came down to do that, and he was already in the bathroom. So he looked around and he had no idea where he was. He I asked him how he was feeling, and he said he was very confused. I said, about what? And he said, I don't know where I am. And I said, Well, Dad, you're you're at home, you're in your bathroom, at home, at your home. And he said, I live here.? And I said, Yeah, like you, you live in the suite in my home. You've lived here for four years. And he said, four years, I've lived here four years? And he was quite shocked by that. So we sat down and went over the story of his accident and how he came to be here, and he takes it all in stride. He doesn't, you know, seem to be distraught when we talk about that stuff. It's the first time he didn't say he he has not got dementia. Anytime I've mentioned it before, he says he thinks people are wrong. he just has a memory problem. So,that was a new thing. He was realizing that he was quite confused, and there must be a reason for it, and he accepted the fact that he's been diagnosed with Alzheimer's and dementia, and he seemed to just accept that. But I do now realize how much he depends on these notes and the whiteboard for sure. If it's not there, he he has no idea what's going on. It's a bit crazy for me to kind of just get in my head. I just can't believe that he cannot know these things. It's just bizarre. Dementia is bizarre.

Lana-Michele 20:21

Really would be nice to see some more well rounded, inclusive ways of dealing and living with dementia. It's only going to increase in our population, being that we have quite an aging population, and it would be nice to have some more things developed in helping us all understand and go through this, because I think it's going to be a big part of a lot of people's lives. So caregivers have a lot on their plate. I've learned that and yeah, I'm just really fortunate that my father has the resources available to him to to live his best life out. I don't know when things are going to change drastically. I definitely see signs that things are progressing and his independence is becoming less and less. I see that frustration for him, but for the most part, he just seems to go with the flow, like just go with what's going on. And I see the fight in him going away. He doesn't have that same drive to to get things done and to be involved. He sort of sits, takes a back seat. He's still willing to do things, but he he will not take any initiative. It just just doesn't happen. Someone's going to make it happen for him. He's got a good network and a good support team, so he's lucky, and I wish that could be the way it was for everybody. It's something that we all are going to be facing with our loved ones. Possibly it could be happening to ourselves down the road. So I think it's important to understand it's important to help the people around us understand it, and I think it's important to be clear now, when we all are of sound minds and motivated enough to maybe make it known to the people in our lives how we'd like to see our journeys go if this happens to us, you know what kinds of things we'd like to do, if at all possible.

Mariko Sakamoto 23:13

Since her last recording, Lana-Michele and her family continue to support Ren at home on the ranch. They enjoy adventuring outdoors as much as they can.

Mariko Sakamoto 23:27

Family caregivers are the lifeblood of the healthcare system for people with dementia. By 2030, it's expected the number of people living with dementia in Canada will be close to a million. This journey is different for everyone, whether you're a caregiver or know someone living with dementia, we hope this podcast series gives you a deeper understanding of the family caregiving experience.

Mariko Sakamoto 23:50

This series is part of a research project that explores storytelling, different ways of listening and the power of being heard. It's made possible by the University of Victoria, with funding from the Social Sciences and Humanities Research Council to see storyteller photos, access episode transcriptions and learn more about our research project, go to our website, at call to mindpodcast.com. And for caregiver resources and to find local supports and services, go to alzheimer.ca.T

Mariko Sakamoto 24:22

This podcast series was produced by Jenny Schine. Sound Design by David Parfit. Executive Producer, Suzanne Ahearne. And I'm Mariko Sakamoto, assistant professor of nursing and a research affiliate with the Institute on Aging and Lifelong Health at the University of Victoria. Thanks to other members of our podcast team, including research coordinator Paulina Santaella, and our research assistants Cole Tamburri and Cynthia McDowell. Technical support, Bruce Devereux and Mendel Skulski. The founder of the Call to Mind podcast is Debra Sheets, professor emerita of nursing at UVic. And of course, I want to thank all the research participants who generously shared their time, stories and experiences as part of this project.