The Current - Caring for an aging parent, when you live hundreds of miles away

Episode Date: April 7, 2025

Shirley Gignac is 73 and living with dementia, but she lives hours away from her two daughters, Annette and Natalie Goerner. As part of our series As We Age, the sisters share how they’ve navigated hard conversations and found ways to care for their mom from a distance.

Whose take do you trust during this election cycle? I'm Rosemary Barton, CBC's chief political correspondent. At Issue is also where I listen and learn from the very best. Chantelle Bair, Andrew Coyne and Althea Raj. They are political heavyweights. They write and talk about politics for Canada's biggest publications and broadcasters, and they help shape the national conversation. So if you're looking for people who can connect the dots, cut through the spin, check out

the At Issue podcast every week, wherever you listen. This is a CBC podcast. Hello, I'm Matt Galloway and this is The Current Podcast. She's been diagnosed with Alzheimer's. She's, you know, she's handling it pretty good so far anyway. That's memory loss. She got short term memory loss. We're getting through day by day. That's Ken Geniac talking about his wife Shirley. Ken and Shirley live in their home in Maidstone, Ontario. He's 80 and she's 73.

She's comfortable here. I think as long as I can look after her as far as getting her meals and keeping her happy. That's the main thing. She's not violent with me. She's not wandering. She's not a wanderer. She can dress herself, bathe herself. Ken and Shirley have been married for more than 20 years. It's a second marriage for both of them.

When Shirley was diagnosed with dementia, Ken tried to get some home care to help out, but Shirley didn't want that. Well, we tried that, you know, just to make sure that she was, you know, showering and taking her medications and stuff like that. She bucked that. She didn't want anybody to come in and tell her, you know, what to do kind of thing. Like, I know when to take a shower. You don't tell me when to take a shower, when to take my medications and stuff.

I've been making sure that she's been taking her meds pretty well every day, so on a routine basis. Ken's mostly on his own now, helping Shirley with day-to-day life. Shirley has two daughters from her first marriage, and they help as much as they can, but they don't live nearby. Annette lives in Ottawa with her family.

Natalie lives outside of Montreal with her family. As part of our series As We Aged, this conversation's around what it means to get older, I'm joined by Shirley's daughters to talk about the challenges that families like theirs face in trying to help their loved ones from a distance. Annette Gerner is in our Ottawa studio and Natalie Gerner is in our Montreal studio.

Good morning to you both. Good morning, Matt. Good morning. What is it like to hear that from Ken, Annette? Oh, it's hard because we love Ken so dearly, but I know that Ken, probably 20 years ago, marrying my mom, didn't think the role would be reversed where he would be taking care of her in his senior years.

I think he always thought he'd have this wonderful caregiving woman whose career was a nurse who's always been very nurturing. I always think he thought she'd be the one caring for him. And now he has to do so much more than he probably ever imagined. So it's hard to hear that. Natalie, tell me about your mom and what she was like before the diagnosis. Yeah, she was always a very busy woman. She, like Annette said, worked as a nurse for many, many years, so was a caregiver to many others. And she loved gardening and being with people,

but she didn't have a whole lot of time to receive and take care of herself. When did you know that something was up with her? Slowly, we would see that she would get a little confused or forget some things. It wasn't a quick, abrupt thing. It was over years. And she got the diagnosis in 2021. And I think the COVID pandemic and being isolated really exacerbated her symptoms and provoked the diagnosis. And what do you remember about that?

With Natalie and I living in Montreal in Ottawa, a big part of our relationship with our mom is by the diagnosis. And what do you remember about that? With Natalie and I living in Montreal in Ottawa, a big part of our relationship with our mom is by the phone. And in just things she would say to us, things she was telling us that she was doing, we thought we were out of character. Do you remember anything specific? Yeah, my stepdad, Ken, had had surgery.

He had hip replacement surgery, and she had back pain all her life, chronic back pain. And she said she started taking some of his pain medication. I said, mom, you know that's not the right thing to do. You're a nurse, you know better. And we thought that was a bit of an odd behavior for her. And then we talked to Ken about some of it and that summer he started to confide in us some of that behavior, confusion when they would go out for a drive. She'd ask three times, where are we going? And there were signs in that year that really pointed to the direction of dementia.

Pete How would you describe how she's doing now? Dr. Jennifer Linn She's certainly in decline. In the last six months, getting her to take her medication has been very difficult, a challenge to say the least. And when she was in that phase of not taking it, we would see a real quick decline in her ability to know who was who, what she was doing. I mean, she doesn't have the ability to even discern what day or year it is anymore. Natalie, it's hard to see our parents age, right?

I mean, seeing them get older can be really difficult. For you, what has this been like? Absolutely, and just to add too about, one, I think one of the biggest markers was she would get confused driving. I think one of the biggest markers was she would get confused driving. I think that was the biggest first thing for me to see that was really difficult, like her really losing

her independence and have her driver's license revoked. That was really challenging. How often, Annette, do you get to see your mom and Ken? This has become the hardest part, I think. We don't see them as much anymore as we used to. Last summer, we made the decision that it was no longer viable or safe for my mom to travel here. Since my oldest was born, he's 10 years old, my mom has come to visit usually either Montreal

and then she'll hop a train or a bus over to Ottawa or vice versa. She makes a two trip out of one every six to eight weeks. So you can imagine the air miles over the years and years because she was just enamored with her grandchildren. She loved coming, but in the last recent years, it was getting harder because she couldn't do it by herself. Ken would have to travel with her and he was never really big on the travel part, but he would do it. And there were a couple really scary moments. He lost her at one point in Pearson airport, just by turning his back for one second and she wandered off.

And it got to the point where last summer, mom came to visit. We brought her back here to give Ken a little bit of a break because he was really struggling with the caregiving responsibilities. And so I drove down, I grabbed mom, I said, I'm going to give you a little break, I'm going to bring her to Ottawa. I'll work from home and I'll just do puzzles with her and keep an eye on her. And it was so disorienting for her. We realized in that moment, we can't take her out of her home anymore.

So the trips now are when we go there. And you know, for Natalie's family of four, mine, we're all working, the kids are in school and have activities. It's hard to manage. So we don't see her as much as we would love to. Natalie, tell me about how hard that is to manage. Because again, they are in kind of the far corner of the southwest corner of Ontario. That's right. Yeah, it's a 10-hour drive for me from Montreal, so it's not a short drive. But I think there's a big realization for me that it's not quantity, it's really quality.

And you know that you just have to be in the present moment and just be with them when you can, and that's okay. We've also, I think, and I had the big realization that as much as we want her to see our children and have that life experience, we've also decided that it's really important and crucial for us to have our time with her now. And so we've decided to go on trips, just the two of us to see her

and not bring our partners and children. And then maybe a trip or two trips a year with them as well. But it's important to have that time, just us with our mother and like enjoy these years we have still. We heard Ken at the beginning of our conversation, he talked about how they're getting by day by day, that he tries to do everything that he can. How do you think Ken is doing, Natalie?

It's not easy for him and I think a lot of people and caregivers have a hard time reaching out for help too and Ken has also experienced being the caregiver at the end of his first wife's life as well. And for me it was important just to acknowledge that to him. I think he gets a lot of support from just conversations with Annette and I, but everyone gets support in the way that works for them. So maybe he'll speak to his brother

or to people in his life. And as a therapist and someone who's worked in mental health for my whole career. I know people do what works for them. One of the things that's working for them right now, and Annette hinted at this, is being in their home, that she feels most comfortable being in that home. And I think that's obvious to most people, that you'd want to stay in your home as long as possible.

I want to play something else from Ken. Have a listen to this. Well, I would like to stay as long as possible. I've been in this home for maybe just about 40 years, I guess, so this is my roots. I got my roots here. This is where I'm comfortable here, I guess. You move to a different city, it's like a,

you move and be too much of a change for me anyway, and probably surely too. Pete And those are tough conversations, right? Julie It has been the hardest conversation we've had on this journey because we have two different lives who are intertwined and married and love each other and want to be together, but on very different journeys. Ken is 80 years old. He is healthy. He loves to golf. He was out golfing in Windsor the other day, believe it or not. And he's very social. He likes to be playing cards. He goes to church. He's

active in his community. My mom can't do any of that stuff. So does Ken want to stay in his home so he can have that freedom? Absolutely. But is it safe for my mom? Not necessarily. That's the hardest part is there is going to come a time where it's not ideal for my mom to be in a home like that, where she doesn't have professional care. And that's the part of like, when do we push a little bit harder to nudge him

into a senior's residence where he still has that freedom to come and go, but mom has always looked after. We tried it a couple of years ago in early days and realized they were nowhere near ready for that. He didn't even want to entertain it. He humored us by going and looking with us at some of the facilities, but it really, we could tell, did not even register for him yet. That is slightly changing. Conversations in the last few months have started to weave in

some language that suggests he is starting to think about what that next step might look like for them. But I know it would be extraordinarily difficult for him because leaving his home is, is leaving part of his life. Natalie and I have had some people tell us, you know, if they leave their home, this is the end of it for them. And. Is that why this is the toughest part of all

of this for you? Oh, absolutely. Because it's balancing Ken's needs as a very social and active senior and making sure he lives out his final years in the most healthy and active way he can. And also looking after what's best for my mom right now so that we don't have a fall or we don't have an accidental issue in the kitchen. Let's say it's that balance that is the hardest thing and understanding that it is their journey.

And we can't force them to make those decisions. It has to be when it feels right for Ken. There's a lot of that that is really hard on Natalie and I. Natalie, I could hear you in the background. Go ahead. Yeah, it's so hard. Usually there's not changes made until the time of crisis. And that's when people feel more ready to make a big serious decision like placing a loved one. So...

Pete Are you comfortable with them still being in that home? Jennifer Yeah, yeah, I am. I've had very candid conversations with her family doctor, which is reassuring to me and it's different being the daughter, but like health professional to health professional. Pete You said it's different being the daughter though, too. Jennifer Yeah, it's much harder. It's, I'm on the other side, right? So it's hard not to put my social worker hat on

and try to push resources and this would be good for you and why don't you do this activity or that activity. We've tried all of these things, but at the end of the day, people are gonna do what's comfortable and familiar for them. And I know they're so comfortable in that home, and like Annette was alluding to, when people go somewhere else, it's a whole identity change.

That can provoke disorientation, confusion for Ken too, and that could be problematic. And so I think things will happen when it's time, and that's okay. – This is something that Ken clearly has been thinking about as well and we asked him what it would be like for him if Shirley had to move out to get more care. Have a listen. I guess leave me with a little bit more freedom, I guess, but that'd be selfish. I'd be selfish thinking that. I wouldn't have to worry about her, I guess, to make sure that she's okay,

she's safe. It would be strange to be by myself, really. I mean, because every time you look across sitting in her chair, I'm sitting in my chair kind of thing. Yeah, it would be strange. It would be strange. And what do you think when you hear that? Yeah, that gets you in the feels when he describes them sitting in their chairs and gosh, that would be so difficult. You know, I think what I discovered last year when mom was visiting and in my home, home for someone with Alzheimer's is not just a physical space, it's the person they're with. And in that case, from my mom home is Ken. She is

in a better place when she is with him. There's a stability, a familiarity. She's had lows. She's had moments where she has called me in January in a panic saying, I'm with this man and he's so lovely and his name is Ken. I don't know exactly who he is. He says he's my husband and, you know, walking her off that ledge. That's heartbreaking. It was very heartbreaking. It was him who called me actually and said, you need to talk to your mother. She's very confused and doesn't know who I am. And so, I reassured her in that moment how important he is to her, that he keeps her safe. And it was in the evening

when you know, you hear the term sundowners and my mom was very disoriented at the end of the day. And I suspect it was a time where she was not on her medication regularly and feeling quite exhausted. And I said, why don't we talk about this again tomorrow? I'll call you first thing in the morning and we'll talk about this nice man named Ken. Outside of that outside of that moment, he has been everything to her. He is home to her. So when I think of the two of them being separated, if she were to go into a facility that could take care of her and he stayed back in the home,

I don't know that that would be best for either one of them. Natalie, can you imagine your mom living without Ken? Oh yeah, it definitely brings up all the emotions. And, um, for me, like the biggest word that comes up is just loss, you know, like that would be so difficult for the two of them, the two of them. And what a big loss that would be for Ken.

I don't think she's there yet. And of course, day in, day out, it's a struggle. It's frustrating. It's challenging for him. But as he said to me, he's not ready to give up on her yet. Yeah. Yeah. Yeah.

And I think between the three of us and the conversations we have on the regular, Natalie and Ken and I, I think we have built a foundation for him of support that when that starts to become more abundantly clear that it's time to make a really hard decision, I think he'll be ready to have that conversation and to tell us that. He was not as open in the early days, three, four, few years ago about what was to come on a journey of Alzheimer's. You don't really want to face it. I think he has really awakened in the last six months to where things are

going to inevitably go. And who knows, because we don't know this disease, it takes on a life of its own in any individual, but knowing that it could be six months or maybe six years down the road that there will come a time where we have to make that decision. But I think because Natalie and I have supported him so well in every way we possibly can imagine and we have tried everything, I think that conversation and that decision will hopefully just be a little bit easier for him. I'm Zing Zing. And I'm Simon Jack. And together we host Good, Bad, Believer. easier for him. One of the really interesting things about this, this is a tricky thing to ask, but it's

important I think because there are a lot of people who are listening who might be in the same position, siblings and they have a family member that they are worried about, that they're keeping an eye on. And there might be tensions and points of disagreement in terms of how to go about this, that one person believes one thing, the other person believes something else. How do you manage to share the load and to keep this civil, if I can put it that way? Annette? That's a great question.

And yeah, Natalie and I have always been close, so we're very fortunate. This is hard. This is really hard. Absolutely. And we could see it differently. I mean, and I can see how these kinds of decisions can tear families apart.

You know, you might have scenarios where, and I think this is pretty common. I know families that have experienced this where there's two, three kids, adult children, and one does the majority of the caregiving and the others kind of back off a little bit. And I think in a lot of cases, it's sometimes the daughter, and sometimes it can create rifts in the family where some people say, look, I'm doing all the work, so I'm going

to make this decision. And the others are like, well, no, we don't want mom or dad going into a long-term care facility. These kind of decisions are not easy. Natalie and I have been able to stay on the same page because we've always kept that dialogue going and we check in with each other on what we're learning from mom and Ken. Like, we just make sure each other's in the know so that we're constantly in this stage of evaluating where things are. That's a good bit of advice for other people. Natalie, you're a therapist.

You've talked about that a couple of times. How does that help in terms of you being able to help yourself through something like this? Well, I actually teach about mindfulness meditation. I don't know if you know anything about that, but it's become very big and popular lately. And so- So what is that idea of being present and being in this moment?

What does that do for you? Oh, it's incredibly powerful, but so hard for all of us to do, to just slow down, quiet down and just be in the present moment without trying to multitask or do many other things or problem solve like we all would tend to do in this sort of situation, right? Are your mothers ill with something? How do you fix it? How do you find the resources? How do you make it better? Well, we can't, right? We have to radically accept, which is another big therapy term that we use, that this is the way it is. And we have to lean on each other and find support. And we both kind of take the different roles.

And then we would just, you know, come together and share what's happening. You can't go 10 steps forward because you're not there yet. That was the best advice we received from someone who was a dear, dear friend of my mom's. She says, just meet her where she's at, you know, and you're not going to apply to so many things in life. But with my mom, it's so ironic because mom lived so stressfully. She was so high-intensity.

It was like everything was just a go, a rush, and now this diagnosis has changed her and changed us and our relationship. How has it changed her, do you think? My mom, for years, I just remember my mom not really laughing and smiling a lot. She's a beautiful woman with a beautiful smile. I don't know if it was the high intensity career of being a nurse or raising two children. I don't know what it was, but it just seemed growing up that mom always felt like she was under such stress all the time. And I remember as a kid, a teenager particularly, just trying to lighten the mood and making her laugh and

she'd say, oh Annette, like almost dismissing it, like this is no time for laughter. Since the diagnosis, I don't know what has happened to her brain to make this happen, but she laughs and giggles all the time. Sometimes you almost think she's drunk because she's like that she's had glasses of wine and she doesn't drink anymore because of the medication. And making her laugh is as easy as ever now. I can call her and the minute I just say, Hey mom, how's it going? And she breaks into laughter to tell me that it's cold outside in Windsor that day. So that's part of the every step by step that Ken talks about and living in

the moment that Natalie talks about that I think is a family we're really embracing and the tiny little small silver lining to this diagnosis is that we're treating every moment we have with her right now is just such a blessing and such a gift because she laughs. She's not in that state of anger and irritability. And don't get me wrong, she can be. She gets there when the evening rolls around or when she's overtired. But on the day to day, when we call her or FaceTime her with the kids, just things make her giggle.

And it's just, that is a joy that a small silver little piece lining of all of this that has really made something really special for all of us. I'll let you both go, but there are people, as I said, Natalie, that are going to hear themselves in the stories that you're telling. What would you say to those people, especially if they are at a distance from their loved ones?

They're not living in even the same house, same block, but they might be hundreds of kilometers away from each other. You can only do what you can do. You can, it does feel good to take some actions because that's how we're wired as human beings, especially in our society nowadays. So, you can look into the resources and see what's available. That does help and that does make you feel good. That grace that you just said, you can do what you can do is really important, right? Yeah, it's okay to just call and have a little talk, even if it's three or four minutes, that's okay during your busy work day.

We got to let go of the guilt. There's too much guilt there for I should have, would have, could have done this, that and the other. That's not helpful. All we can do is take, do something in the present moment and that's enough. That's enough. And that what would you say? Yeah, I'd say give yourself some grace. You know, Natalie and I, our story, what we've shared today is definitely not unique. And yeah, there's going to be days where you feel so guilty that you're not doing enough or you're not there

with them and you're too busy doing other things and you want to prioritize, you know, your aging parents. But you know, we are by definition the sandwich generation raising our children, worried about our parents. And we always have to remind ourselves we do it for each other. We do it for Ken. And I really implore this to anybody who feels this to you to give yourself some of the grace that you deserve that is a terrible disease, but that it is a day-by-day journey and you have to do it gracefully and understand that everything will be okay in the end. And you're doing the best you can. Yeah, absolutely. Yeah. I'm really glad to talk to you both and thank you for being, this is hard, and you're both really honest in this conversation and that's not easy as well. So I really do appreciate that.

Thanks, Matt. Appreciate the opportunity. Thank you. Annette Gerner is in Ottawa. Natalie Gerner is in Montreal. As I mentioned, I think a lot of people can probably hear themselves in that conversation. If you are one of them, you can send us an email, thecurrentatcbc.ca, and we will continue

to bring you stories about getting older coming up in the weeks ahead.