[The Well Endowed Podcast theme music plays]

Graeme Lummer [00:00:25] Hi everyone. Welcome to The Well Endowed Podcast. I’m Graeme Lummer.

Shereen Zink [00:00:29] And I’m Shereen...

Zink. This podcast is brought to you by Edmonton Community Foundation. We’re a proud affiliate member of the Alberta Podcast Network.

Graeme [00:00:36] Edmonton is full of generous donors who’ve created endowment funds at ECF. These funds are carefully stewarded to generate money that supports charities in Edmonton and beyond.

Shereen [00:00:45] On this podcast, we share stories about how these funds help strengthen our community… because it’s good to be well endowed.

Graeme [00:00:51] On this episode, we talk about the challenges of living with dementia and how one family has come together to support their mom.

Shereen [00:00:58] Dementia is overwhelming and it’s scary, both for those living with the condition and for their families who are also often their caregivers.

Graeme [00:01:05] There is still so much we don’t know about dementia. It can affect people of various ages and each person’s experience is completely unique.

Shereen [00:01:12] That’s why Candace Smallwood created an endowment fund here at ECF. The fund is called Shannon’s Fund for Dementia Research. Candace created this fund in honour of her mother-in-law, Shannon Heemeryck, who is living with dementia.

Graeme [00:01:25] We asked Johnna Lowther to join us as a correspondent for this story. Johnna is the producer of the podcast Life with Dementia, and she works with Caregivers Alberta, a charitable organization that supports caregivers of all kinds, including those working with dementia.

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Shereen [00:01:38] Johnna sat down with Candace Smallwood and Candace’s sister-in-law, Kristen Smallwood, to hear about their family’s experience in navigating dementia. Over to you Johnna.

Johnna Lowther [00:01:47] Our guests today are Candace Smallwood and Kristen Smallwood, daughter and daughter-in-law to their mother, Shannon Heemeryck, who’s currently living with frontotemporal dementia. Candace and Kristen are gonna share with us today how this experience, uh, has inspired the family to create an endowment fund in Shannon’s honour with the Edmonton Community Foundation.

Let’s just get some quick background for our listeners and, uh, tell us… how long ago was Shannon diagnosed? Or how long has she been living with this disease?

Candace Smallwood [00:02:22] Um, so I think she was diagnosed in 2016, so she would’ve been 59, I believe. And we started seeing… just some changes in her that led us to the diagnosis probably about two years prior to that.

Johnna [00:02:38] And earlier we were chatting and discovered that she was living with you at the time.

Candace [00:02:41] Yeah, so Shannon and her husband, um, live out in Kelowna in Winfield. Really amazing place out, uh, on Okanagan Lake. And so, she was here doing a contract. She had worked with Telus for many years, and she had come back to Edmonton, so was staying with, uh, my husband and I during that time when we had, yeah, just started to notice some different things happening that, uh, led us to where we are today, I guess.

Johnna [00:03:08] Tell us what that was like for the family. Receiving that diagnosis, discovering that diagnosis. You said it was a little bit of a… a long haul to get there.

Kristen Smallwood [00:03:16] Yeah, so i-it started like Candace was saying, you know, with kind of just little bits of odd behavior and we were, you know, just kind of, amongst our immediate family, just kind of talking about it. And more of the extended family kind of started noticing things and making comments. And, you know, we had lots of speculation. There’s this and that. And we kind of finally just got her to, you know, make an appointment and go see a doctor and get some tests and stuff done. And I think that was— early 2016, I think, was when she started to go and start the, like, testing and… and that kind of stuff.

And then… I don’t think it was very long, hey, Candace? After she went to the doctor and did, like, the initial testing and stuff like that before they had a pretty good idea of what, you know… what was going on. Um, I think they just wanted to make sure because of her age. She was still quite young for anything of that sort. So, yeah, they just wanted to try to get as much, kinda, everything else, I guess, sort of ruled out first, just to be absolutely sure.

Candace [00:04:17] Mm-hmm. And I think finding the right doctor to make that diagnosis. We had talked about, um, just how it’s a pretty unique type of dementia and it doesn’t present with the same types of symptoms and things that Alzheimer’s would. So, her general practitioner, like her doctor, he couldn’t use the clock test and that type of thing ’cause that wasn’t the types of things that we were seeing. Um, and so it was even hard just at the beginning talking about it because we just didn’t really know what was going on. We just knew that something was changing and that she just— she wasn’t really herself anymore. So it was hard to figure out where to go with that. But once she got in to start to see a neurologist, he obviously had a lot better understanding.

Johnna [00:05:01] Was that difficult to convince, uh, her to… to make the doctor’s appointment or, you know, was she on board with receiving that… that input from family?

Candace [00:05:11] It was a little bit challenging. Hey, Kris? She—

Kristen [00:05:14] It was, and it wasn’t. Um, it’s not that she, you know, didn’t like doctors or anything like that. I think she just… kind of played it off for the first little bit as, you know, us just saying, you know, “You’re… you’re acting a bit off.” An-and she kind of was like, “No, no, no. It’s just because I’ve been away from home and, you know, away from my husband. And once I’m done with this contract and I-I move back home, things will start to get, you know, better.”

So, you know, she was— she still had a little bit of time left on that contract, so we obviously were hopeful that that was the case and wanted to kind of give that the benefit of the doubt. But after she started to move back home, I think it was just noticed a little bit more, um, not just because of the amount of time that had passed, but I think while she was living with Candace and my brother, she was kind of isolating herself a little bit, so we weren’t really able to see as much of the behaviour. Just the behaviour we did see was odd. And then when she moved back home and my stepdad started seeing it for himself, like, while he was with her all the— ’cause he’s with her all the time, he started noticing it, too.

[00:06:21] And then, you know, she kind of… accepted that, “Okay, you know, I’m worrying them. An-and I’ve been home for enough time now.” Um, she still didn’t think anything was wrong. She— She’ll tell you even to this day that she only went to the doctor because, um— [Candace: Calvin made her.] Yeah, my brother made her. And, uh, she basically wanted to just put his mind at ease by going to the doctor, um, but obviously it led to where we are.

Johnna [00:06:47] I wanna briefly share some information about frontotemporal dementia. I gathered this from the Alzheimer’s Society of Canada. Anyone listening can reference that, but you’re right, frontotemporal dementia is very different than, uh, Alzheimer’s disease, but they’re both a form of dementia. And what I found really interesting was that researchers estimate approximately 5-10% of all dementia cases are frontotemporal. When the symptoms of dementia start before the age of 65, as was the case for your mom, that approximately 20% of those cases are frontotemporal dementia. And so, it sounds, like, a little more common when it’s a younger onset case. But Alzheimer’s Society of Canada describes frontotemporal dementia as an umbrella term for a group of rare disorders that primarily affect the frontal and temporal regions of the brain, hence the name. And these are the areas generally associated with personality and behaviour. And you both mentioned those. Those were the signs that you noticed just something was off, right? So you wanna give an example of… of one of those first signs?

Kristen [00:07:47] You would’ve noticed it first because she was living with you.

Candace [00:07:50] Yeah. So I mean, part of it, Kristen had already touched on. That she kind of started to isolate herself. She says that she’s not, um, an outgoing person, although she loves to chat with people. She always has. She’ll chat your ear off, which is amazing. But, you know, she just really kind of started to draw away. She didn’t really want to do a lot of things. So we were kind of thinking that it was more depression. Sad because she wasn’t at home with her husband, David. You know, missing her life at home in warm BC and instead she was here in cold Edmonton. Some of that was happening.

Just kind of like loss of inhibitions, too. She, you know, was starting to go up and talk to strangers about kind of unusual things where that’s something that, you know, in many cases people are more inhibited, right? You don’t really go up and talk to someone you don’t know unless you have something to say to them. [Johnna: Mm-hmm.] Um, but just passersby, she was more than happy to go up and tell ’em anything. Yeah. So there was just some unusual stuff with that.

Johnna [00:08:49] And what did you notice, Kristen?

Kristen [00:08:52] Um, my mom is a, uh, extremely intelligent person. She was very big on learning and education, and she was the kind of person that would soak up anything and everything that she could. So, you know, any question about anything ever anyone had, you just asked my mom and she’d have at least a tiny bit of information on it. It was actually just insane. So for me, it was seeing her kind of not, uh, recall… like, a song. She would know every word to the song, and she would know the song, but she couldn’t put the face of, say, th-the band or the musician to it. Or, you know, you could quote her something or talk about a painting or something that she really loved and she would start to just lose interest in that. So it started in-in my opinion, like, with what I noticed was yes, definitely behavioural stuff. But also, she just didn’t really have interest in reading anymore.

[00:09:47] And when she was staying, uh, with Candace and my brother, she would display birthday cards around her room of people that literally lived blocks away that she could go and visit. And it just— Yeah, like, strange things that mostly I attributed with just a complete opposite of… of her, you know, intelligence and her wit. And that’s what I kind of started noticing first, instead of the odd behaviour. My mom’s always been a tad eccentric in certain ways. So some stuff that my brother and Candace were noticing, I-I kind of was like, “Yeah, well, you know, sometimes she can just be weird.” But it just became a lot more than just one-offs. [Johnna: Mm-hmm.] Um, it was a little bit more obvious, I guess, at that point.

Johnna [00:10:27] This type of dementia can cause behaviour changes. Uh, it causes difficulties with speech and movement or memory loss. But it’s important to note that frontotemporal dementia, again, is a specific form. It has some similarities to Alzheimer’s disease. You know, people living with Alzheimer’s disease often also can’t remember certain names of objects, or they might have some inhibitions, you know, in their… in their behaviour also. People with frontotemporal dementia often remain conscious of time versus people with Alzheimer’s disease. Is that true for her case? Like, did she know what year it was? Was she aware of time and date?

Candace [00:10:59] Absolutely. Yeah. I think still. I mean— [Kristen: Still does, yeah.] We’re quite a few years into her diagnosis and yeah, loss of time, that hasn’t been an issue at all. Even with people, except for people that she hasn’t seen in, like, a really long time. But I guess maybe that’s starting now.

Kristen [00:11:17] It’s connecting the dots, I think. [Candace: Yeah…] Because she could talk about someone and they could be standing right beside her, and if she hadn’t seen them for an extended period of time, she couldn’t put that person’s face with her memory. But she can remember, you know, stuff from when she was a little kid. And she can remember a family tree like nobody’s business. So she’s definitely had no issues with concept of time. She doesn’t think she’s in a different time. Um, she doesn’t have those kinds of periods where, you know, she’s— thinks that it’s, you know, X year or she’s in X place. She never has that. She does sometimes, I think, feel emotions of time. She’ll hear a song or… or something will happen and, you know, we all get nostalgia or we all… feel emotions. But she, I think, will feel the emotions of that time. And it almost brings her there. But she knows what year it is. I don’t… I don’t know if that really makes sense, but—

Johnna [00:12:17] That’s a very distinct difference between this disease, this type of dementia, frontotemporal dementia, and Alzheimer’s disease. Because very often Alzheimer’s disease, um, very quickly confuses time and place for people with that disease. So very— that’s very unique.

For those who have experience with Alzheimer’s disease specifically, you can see some of the symptoms that we just talked about are similar. However, frontotemporal dementia affects different areas of the brain than Alzheimer’s disease. So current available dementia medications, which are primarily used to treat Alzheimer’s disease, do not work for the treatment of frontotemporal dementia. And so this means at present, there is no effective way to slow the progression of this form of dementia. Is that true?

Candace [00:12:58] Nope, no treatments.

Kristen [00:12:59] Yeah. It’s, um— We’re kind of in that phase right now, um, where my stepdad is working with the doctors to try to not find, um, a cure or… or, you know, something to slow it down. At this point, his big thing is a medication that will kind of… dull the, you know, inhibitions. I think it’s more just the effect— [Candace: Quality of life.] Yeah. The effects of… of it. Not so much aggression but, you know, um, it’s more trying to control the symptoms, I guess, [Johnna: Mm-hmm. Absolutely.] is a better way of… of putting it. Kind of like cold medication. You know, you can’t always get to the root of it, but you can try to mediate the… the symptoms or… or the effects, I guess, of it.

Johnna [00:13:44] Yeah, you treat the symptoms, you know, in order to have a better quality of life. So, absolutely. I— There’s certainly that treatment option to treat the symptoms. Um, you know, I think, too… most researchers will say, you know, like, the… the duration of living with any of these diseases often depends on, you know, th-the health of the body that’s experiencing it, right? So there are just so many factors, you know, and they’re just— they’re continuing to discover so many different factors that… that impact all these various forms of dementia. So it’s… it’s interesting to see, um, what’s coming out and what will. I’m really curious to see what the future, uh, is gonna look like for people living with dementia. Yeah. I-I myself have a family history of it, so I— I’m— I will always be keenly interested [laughs] in what… what are the science and technology, um, you know, changes that are gonna create a better quality of life for living with this because you can’t… you can’t change living with it if you have it, you know? [Candace: Mm-hmm.] And so how do… how do we live well with it?

[00:14:44] We often talk about the changes we see in the person living with such a diagnosis, but we don’t often talk about the changes that occur in us as a friend or as a family member. Uh, so what have you noticed looking— from the outside looking in on the relationship between mother and son, say, Candace? Um, or, you know, son and wife, you know, between h-how did that affect your relationship with your husband? You know, and, um, Kristen, whatever you would want to share in that space, too. What have you noticed from the outside looking in on relationships?

Kristen [00:15:17] Um, well, myself—It’s… it’s obviously a different relationship with her, but it’s changed the dynamics of our, um, immediate family a lot. You know, my stepdad is alone in BC with her, so there’s a lot more, um, that he’s taking on by himself. But it has changed the dynamic with us and him especially, you know. Now more so. But [sighs] it’s… it’s hard. You know, everybody deals with things in their own way an-and, you know, you kind of go through your own… process, I guess, of coming to terms with… with things. And Candace and I were always very [laughs]— we’re always right in there, kind of like a, uh… a dirty shirt where we wanna know what’s going on and we wanna figure out how to fix it ’cause we don’t wanna deal with it anymore, we want it to stop. Whereas, you know, some other people in our family are more along the lines of just live and let live, just kind of leave her alone… or avoidance. So we’re just a little bit different with that.

[00:16:16] And maybe it’s just who we are or the re-relationship we had with— or have with my mom. But, um, it’s definitely made things, you know, certainly closer in certain aspects. But it’s tough because… just, like, you know, you get more than what, two, three people together, you all kind of start to get differing ideas and it’s, um… it’s definitely a process, for sure. An-and, you know, you kinda have to navigate your way, um, with each other and how everyone’s handling it and how you’re handling it and whether you’re giving them the freedom and the space to be able to deal with it how they wanna deal with it. And so, it-it’s a bit tricky. I mean, I’m kind of on my own in this aspect. Like, over here. So I think Candace being an in-law, it’s a little bit different for her. Candace?

Candace [00:17:06] I mean, dementia’s hard… on everyone. [Johnna: Mm-hmm.] Yeah, I mean, it’s tough to watch Kristen and my husband, Calvin, go through it. They’re very different people. Um, it’s a tough situation. There’s really nothing… that we can do. There’s nothing that can change it. And, you know, seeing the changes in the relationship between… well, Shannon and everyone. She’s a different person. Completely. She doesn’t have the same interests. She loved gardening and cooking and children and, you know, just being involved and doing things and going out for lovely, big family dinners or having everyone over. She, like— She’s— She doesn’t really have any interest in hanging out with her grandkids ’cause there’s just no— nothing in common. Like, she doesn’t have a lot of interests anymore. She’s just kind of here, existing, and it’s tough.

Johnna [00:18:07] [sympathetic] Mm. What… what have you done, um, either of you, to sort of… um, build a relationship with this new person that your mom is?

Kristen [00:18:18] That’s a tough one. Um, it’s hard because we know who she was and who she is now, but she doesn’t. She thinks she’s the same person. So it’s tough, um… in the sense that she doesn’t obviously understand or… or even notice that anything is happening or changing. So when you have someone who doesn’t really have any interest in anything anymore, she’ll love to talk about all these things. Like, “Oh, I love my grandkids. Oh, it’s so nice having grandkids.” But then when she’s with them, she just sits there, um, and is not at all present. She doesn’t show any sort of positive, negative, any emotion.

[00:19:02] That’s… that’s been a very big thing, I think, is she is utterly and completely void of any emotion. Good or bad, she has no emotion at all. You know, I know with certain types of dementia, some people can get really, um, angry or… or aggressive or, you know, she— I mean, I’m glad she doesn’t, but she has absolutely no emotion. Nothing. So it’s difficult to find a connection or… or do things with that person or talk to someone like that when they have… no emotion. They don’t get happy about anything. They don’t get sad about anything. They don’t have interest in anything. So it’s… it’s difficult because you just feel like you’re on a one-sided conversation because there is no way to connect with someone who… can’t connect.

Johnna [00:19:51] Yeah. That’s gotta be hard. But you still visit, you still spend time with her.

Kristen [00:19:57] Yep. Yeah, we try… we try to do— Um, you know, with them living away, it is difficult. But, uh, anytime they come and visit, which they’ve been visiting quite a lot, and, um, we try to get out there as much as we can. But we do see them, I would say, probably upwards of four or five times a year minimum. [Candace: Mm-hmm.] Different durations of time. But, uh, anytime that they’re here, we’ll see them regardless of how long. The doctors did say that communication with people, like, seeing them face to face is the best thing that we can do for her. So we… we used to have a schedule. It’s a little bit more different now with, you know, lives and work and stuff, but where we, um, video chat with them so that she can continue to see our faces, even though we’re far away.

[00:20:43] Because she will look at a photo and not know who anyone in that photo is. But when she’s talking to you, she knows who you are. So the best thing that we can do, especially for connection-wise, is just… see her, be with her. And that’s something that she does enjoy regardless of what you’re doing. If she’s just with you, she’s… pretty happy about it. Even if she doesn’t come across or show happiness, she always talks about how just being around her kids and grandkids makes her happy. So whether that does, it’s something that, um, the old mom would love, so— [Johnna: Yeah.] Regardless of what we’re doing, we just… spend time with her, you know? [Johnna: Mm-hmm.]

Candace [00:21:21] Yeah. Everyone kind of has, like, a standing date every week or every second week. Like, all of the kids. So there’s— It’s a big family. There’s Kristen and Calvin and their two stepbrothers as well. And then she has… you know, a number of siblings as well. So I think everybody tries to make a big effort just to make sure that we’re connecting because they do live away. It’s hard to— You don’t get to do those Sunday dinners anymore. [Johnna: Yeah.] So at least, you know, trying to connect every week or every couple of weeks, which I think is nice. And then doing the things that she still does enjoy. Like, she still enjoys going out for walks and she does like colouring with the kids and stuff. So, I mean, there’s still some interest there. And music. [emphasized] Oh. My. Goodness. Uh, so I mean, there’s still some things that, I think, although it’s hard to see, that she enjoys these things, I think she really does. So.

Johnna [00:22:15] Yeah, ’cause even though she can’t express it. You know, the disease has affected her ability to… to express that, but [Candace: Mm-hmm.] she’s obviously still enjoying it if she’s still participating and engaging, right?

Kristen [00:22:24] And she’ll dance with strangers in the street.

[Johnna laughs]

So she knows… she knows how to engage that way. She loves it. Anytime she hears a song, it’s really triggering for her memory. So it… it’s nice in that way. You know, we hear the same songs and it drives us nuts, but it… it does trigger so much in… in her brain an-and… brings her wherever in time that that song was of, you know, some sort of sentimental importance. But she’ll dance. She’ll dance for any reason, at any point.

Johnna [00:22:52] That is true for… for many types of dementias that music is a trigger. [Candace: Yeah.] Like… like you both are mentioning. It’s… it’s been a very healthy intervention for Alzheimer’s disease, people living with that, an-and lots of other kinds of dementias. You know, I remember my first interaction with someone living with Alzheimer’s disease specifically, and I played the piano— I grew up playing the piano. And, um, I was working in a… a senior center and I sat down to play the piano. And this— one of the residents who lived there, who walked often, just kind of, you know, walked to work out her anxiety, but didn’t really speak much. She… she really had a hard time putting words in front of each other and creating a sentence. And so she was a little, you know, antisocial, a little isolated because it frustrated her that she couldn’t speak in a sentence with anyone. I started playing the piano and it happened to be a song she knew and she sat down next to me and started singing the song. An-and I was blown away. I was like, “W-w-what is this? Like, what is happening right now?” Right? And then, of course, I— that… that spurred my interest to learn more and more about Alzheimer’s disease specifically, which then just, you know, I just kept learning more about dementias in general and then… and then ended up in the— in a— sitting with my grandfather who ended up having Alzheimer’s disease at a later date after that. And so that experience has just been forever… ingrained in my brain. An-and music is very valuable.

Candace [00:24:17] Yeah, it’s incredible.

Kristen [00:24:18] They don’t have to worry about what they’re gonna say ’cause they know the words are already laid out for them. So it’s almost like they might not be able to express exactly what they wanna say verbally, but it’s almost like the words of the song can just say almost what they wanna say or what they think they wanna say. [Johnna: Mm-hmm] Um, and the words never change. So [Johnna: Yeah] it’s almost like— I don’t wanna say muscle memory because it’s worse. [Johnna: Yes! Yes.] But it kind of is muscle memory.

[00:24:45] So it is interesting because my mother actually also plays the piano, so it’s… it’s… it’s kind of bizarre to— for me, I don’t know about how Candace is, but, uh, it’s so crazy to me that she is still— well, I guess she’s not as much now, um, but taking piano lessons and she’s learning how to play the piano while all of this is going on. I don’t even know how something like that can be possible when you’re losing so much information, um, or the way to access that information. But yet you’re somehow able to bring in new information. So it’s… it’s crazy. But yeah, she will sit down an-and play the piano. She likes to call people, um, on their birthday and play happy birthday to them. So it’s… it’s pretty… it’s pretty crazy. I— Just kind of blows my mind sometimes.

Johnna [00:25:33] You know, they— researchers an-and physicians and practitioners will, um— have been talking a lot about that learning anything new is… is a really, uh— it’s… it’s a— they’re seeing that it’s a positive intervention and can actually slow progression with certain forms of dementia. So maybe that’s certainly the case, you know— With… with your mother, too, she’s been living with this for almost eight years, it sounds like. [Candace: Yep.] So to be able to still be at that, um, high… high capacity, you know, tha-that’s amazing and that’s wonderful.

Candace [00:26:04] Yeah. Well, and she— I mean, she does consider it as something that’s really important to do that. And her Sudoku puzzles. She— I mean, she knows that it’s good for her memory and she knows that there’s something going on there. So before she was diagnosed, or right near the beginning of her diagnosis, when she started to take piano lessons. So, yeah.

Kristen [00:26:23] So it was definitely right around the very beginning, for sure, when… um, when she started taking those lessons. But it’s just funny because it’s stuff like that that you almost see a little bit of her old personality come through because she would always try to learn everything and anything she could. And she bought a ridiculously… extravagant piano just to learn how to play it. [Johnna laughs] So that… that is kind of like little bits of her kind of shining through that she’s that determined to learn something, anything, that I guess even, you know, a brain disease can’t stop that. But, uh, the Sudoku thing? That also blows my mind. I can’t even do that and I don’t have any sort of—

Johnna [00:27:06] I can’t, either. No, I hear you.

Kristen [00:27:08] Brain deterioration. And she does it no probl— It’s almost like… like a word search or a crossword for her. It’s— So it’s crazy how, you know, some… some things can fire and connect so well, and so almost seamless for her and then other things…

Johnna [00:27:23] Yeah. And it’s important to attempt to… to learn new things because our brains have the amazing capacity to heal themselves. With Alzheimer’s disease and dementias and, you know, it’s… it’s injuring the brain, but our brains can recover from certain injuries. And so they can route around, you know, those… those gray areas and those roadblocks sometimes if they’re— if they’re given the— if they’re given the right exercises to do, I guess. And, you know— And there’s no… there’s no magic exercise, you know, again, it kind of depends on the… the cognitive status of the person living with the diagnosis, what was their previous knowledge base. And all of that factors into it.

[00:28:02] Dementia can feel very scary or overwhelming, and it can affect not just the elderly. Uh, that’s a very common stigma that it only affects the elderly. You know, your mom’s a perfect example of an earlier in age diagnosis. So we’ve chatted a little about the challenges for what it’s like to live with this type of dementia. We’ve heard a little about how this diagnosis has affected your family and relationships. Let’s talk about how families and individuals living with dementia approach these challenges and build community to support one another. What are those key pieces of support you have experienced on this journey so far?

Candace [00:28:38] I think that’s something that our family is still working on. So I mean, we’ve tried to look for opportunities. They’re in a pretty small place. So Kelowna, I think, as it stands, there isn’t a ton of just resources there. So there is a— I think there was an Alzheimer’s support group or, um, kind of a program that she had looked at getting into, and I think it only lasted about one or two days, unfortunately. So honestly, it’s something that we’re really struggling with. I think especially, you know, where their house is. They’re kind of up in the hills. And I mean, they have good neighbours and things, but there’s just not a lot of resources out there. And it is a very isolating disease.

[00:29:23] And it’s hard, although I don’t think we’re at that point yet, but it’s hard for David to, at this point, I think, still feel comfortable having to go out and get groceries and, you know, have time for himself. We’re kind of getting to that point where… we need to figure things out. And so, you know, it’s something that we’re just trying to work on as a family. How we can continue to support, especially being away. Kristen and I always have our own thoughts on that and how much we would like her home. [Kristen: [laughs] Yeah.] Uh, but that’s not gonna happen. So just trying to get creative on how we can make sure that they’re both supported.

Kristen [00:30:03] We definitely have a lot more resources here than they do. I think for a few of the things that she had to go through, they had to go to… was it Vancouver, Candace, or was it Victoria? [Candace: Yeah, for some of the testing.] So it’s, um— it being a small place, it’s not easy for them. But yeah, they did… they did try what was offered, um, there. It was supposed to be a… kind of like a group thing where, um, you know, a bunch of people in the community who have family members that are suffering from any form could come. They could all be together and, um, nobody had to worry about whether they were gonna go and, you know, say something inappropriate to a random stranger. Um, and the caregivers could have a little bit of time to themselves or be— you know, get a little bit of a break.

[00:30:49] But it’s difficult, just like any situation where you have a lot of people together, some things can clash and it’s even more difficult when the people don’t understand if they are doing something or not doing something. Um, they don’t understand. So… unfortunately, that did not go too well with, um, just some behavioural stuff, so. [Johnna: Mm-hmm.] Which is really sad because she really enjoyed it the first day. There was— they were painting. Um, I think she said they did some dancing. It was nice for… for her to be able to go by herself and do her own thing and not, um, have anybody… kind of hanging on to her or watching her or anything like that.

[00:31:29] So it was nice, but, you know, with it not working out, it’s kind of like a “Well, that’s kind of all we have to offer. That’s all there is.” So it is hard because I do definitely think my stepdad is starting to now really feel the heaviness of it, and it is getting more challenging for him day by day. So when there’s not a whole lot of resources for you, it just… can make you feel like you’re by yourself in— on this stuff. You know?

[00:31:54] An-and with us being here— I do think the most important thing for anybody going through any version of this is… you gotta be with your family regardless of where you are. You’ve got to do whatever you have to do, move what you have to move. From my personal experience, it’s so much more added stress and, um, just disruption, having distance because, [Johnna: Mm-hmm.] you know, if you’ve got your family with you, people can take turns doing certain things. You have a lot more physical support, not just the emotional, because the emotional’s always there regardless of where you are. But with these kinds of things, you do need physical support, you know, so I-I think honestly, that’s the most important thing is literally having your family present so that everyone can get— band together an-and deal with it as a family and make decisions as a family. I mean, it’s obviously easier said than done, but, um—

Johnna [00:32:46] No, but that’s great advice. That’s— you know, because even… even if, uh— I mean, many families all don’t live in the same space. So long distance caregiving is… is a real reality of our modern world, right? But finding opportunities to bring family together, you know, however often that you can and/or, you know, bringing what I… what I call “chosen family” to… to the support network. [Candace: Mm-hmm.] So who’s… you know, wh-who’s the neighbour that’s known my grandfather for 30 years that can, you know, kind of step in and give my grandmother a break. Things like that. It’s obvious, regardless of where you live, that more support could be provided and should be provided for the kind of care, uh, that people with dementia and their caregivers need most. You know, there’s… there’s long-term or home-based assistance with activities is… is a huge… a huge need or just help navigating the complex medical care system. You know, just finding a few local resources is a challenge.

[00:33:38] Of course, respite care is… is a huge support as well as caregiver training to help caregivers better manage the role of… of caring for a loved one at home. And, uh, the-these are some of the things that Caregivers Alberta offers, a nonprofit organization that I work for right here in Alberta. And I’m personally based in Edmonton, where we… where we are today. But we have staff in areas all over the province, and we work very closely with partners and collaborators within both urban and rural settings. Supports and services available within cities versus small town or rural areas can differ greatly. You guys have already highlighted that. The great thing about Caregivers Alberta is that the services we directly offer are accessible regardless of where you live.

[00:34:21] We’ve always offered a… a provincial-wide, toll-free caregiver support line. And that’s been the basic founding service of the organization, which was founded 20 years ago by family caregivers, for family caregivers. And we-we’ve always— that’s always been the basis, that’s always been th-the core service. And that continues to be the primary support service we have, as well as programs like COMPASS for the Caregiver and our caregiver support community programs that offer education and training and peer learning opportunities, which are extremely valuable services when you’re feeling scared or overwhelmed with a new diagnosis or just facing burnout from years of being a caregiver. So you guys living here in Alberta can access those programs and services. We actually have a sister organization in BC. There’s the Family Caregivers of British Columbia as well who offer very, very similar types of services that your stepdad would certainly be eligible to… to access and [Candace: Mm-hmm.] they’re free services, they’re free programs.

[00:35:12] When I first started working for Caregivers Alberta, I was amazed at how many people I would talk to on the phone who were caregivers who were unaware that, you know, they may be eligible for… for home care services. You know, hadn’t even thought to check into that yet. You know, and of course it’s a process and there’s assessments and all of that. All right, we know our medical system can be confusing and frustrating and complex, but there are services there. It’s just knowing how to find them. And so, that’s… that’s another thing that we do a lot of is just talking with caregivers on the phone an-and helping them discover what are the resources within healthcare or within the community-based organizations in their area.

Candace [00:35:48] Yeah. And I— you know, I just— I think it’s important to eventually come to that acceptance that we can’t do this all on our own, any of us. And at some point, you know, we do have to talk to someone. We do have to ask for help. How do you even navigate the resources that are out there? Maybe just, you know, a shoulder to cry on or someone to commiserate with. But either way, it’s not something, I think, that you can do completely on… on your own. It’s… it’s heavy.

Johnna [00:36:13] The ability to ask for help is that first step towards recovering from burnout, um, or building tha-that resilience to sort of be able t-to handle the… the stress that it… that it does cause. You know, the disruptions that it does bring to your life, all that is real. Certainly, some of that is what caused or inspired you and your family to start this en-endowment fund, I would assume, through the Edmonton Community Foundation.

Candace [00:36:37] I like to solve problems and figure out solutions to things. And this is one of those things in my life. There’s— I don’t have control. I can’t figure it out. I can’t find a solution. I can’t find any way to fix it. And by profession, I’m a fundraiser. So, I don’t know. It was my first instinct to just— if we can’t figure out any way to help our family and change our situation, maybe we can do something so families down the road have a different experience. And so, that’s kind of where Shannon’s Fund came from.

Johnna [00:37:09] I think that that’s a… a beautiful example of how, you know, you all sort of processed, uh, an-and met the challenges that dementia brought to your family. And… and I think that’s a— it’s a lovely way to close the conversation today. So thank you so much, Candace and Kristen, for opening your heart and sharing so that we can all learn from your experience.
Uh, if you wanna know more about the endowment fund we talked about, please visit ecfoundation.org and click the donate button. You can find information about Shannon’s Dementia Fund there. Uh, if you are a caregiver needing more support, please reach out to Caregivers Alberta. You can visit our website, CaregiversAlberta.ca, or phone us toll free, 1-877-453-5088. Again, thank you so much, Candace and Kristen.

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I hope those of you listening today found some hope, encouragement, and a little more knowledge about how you can approach life, uh, with dementia. I believe it’s all of our job to take care of and better support families and individuals touched by any kind of dementia in their life. So, thank you.

Graeme [00:38:11] A big thanks to Johnna Lowther for bringing us this story. And thank you to Candace and Kristen Smallwood for sharing their time and experience with us.

Shereen [00:38:22] Head on over to our show notes to find out more about Shannon’s Fund for Dementia Research, and for links to Johnna’s podcast and other resources.

Graeme [00:38:30] We’ll also have links to information about how you can create a fund of your own to support the community needs that are important to you.

Shereen [00:38:36] And for more stories about ECF and Edmonton’s charitable sector, check out ECF’s Well Endowed Web Show and read the latest on our blog.

Graeme [00:38:43] We’ll have those links, too, along with more information for upcoming granting deadlines and funding opportunities. There’s always lots to check out.

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Shereen [00:38:49] That brings us to the end of the show. Thanks for sharing your time with us.

Graeme [00:38:53] Yeah, we appreciate it. If you enjoyed it, please share it with everyone you know.

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Graeme [00:39:04] You can also connect with us on Facebook where you can share your thoughts and see some pictures.

Shereen [00:39:07] Thanks again for tuning in. We’ve been your hosts, Shereen Zink—

Graeme [00:39:10] And Graeme Lummer.

Shereen and Graeme [00:39:12] Until next time!

Andrew Paul [00:39:14] The Well Endowed Podcast is produced by Edmonton Community Foundation—

Lisa Pruden [00:39:18] And is an affiliate member of the Alberta Podcast Network.

Andrew [00:39:21] This episode was edited by Lisa Pruden.

Lisa [00:39:24] You can visit our website at TheWellEndowedPodcast.com.

Andrew [00:39:27] Subscribe to us on iTunes—

Lisa [00:39:28] And follow us on Twitter at @theECF.

Andrew [00:39:31] Our theme music is by Octavo Productions.

Lisa [00:39:34] And as always, don’t forget to visit Edmonton Community Foundation at ecfoundation.org.

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