Transcript 33

Speaker 1 [00:00:11] I'm Elaine, we are smart. I am the director of the Center for Education Research on Aging and Health at Lakehead University in Thunder Bay, Ontario. And today I have the wonderful privilege of having the Mercer family with me. The title of this podcast is It's a family affair, and we really wanted to get the perspective of families and of a family who is dealing with dementia. So we have Bill and Clara Mercer Road. Clara was diagnosed in 2016 about four years ago, and their two daughters, Patty, who lives outside of Thunder Bay, and Joanne, who lives here in Thunder Bay. And so we want to we want to talk with them a little bit about their family experience with dementia because dementia doesn't just affect individuals, but it affects families as well. So, Bill Clara, Patty, Joanne, thank you so much for taking the time. How would you describe your family?

 

Speaker 2 [00:01:16] We all get along very good. I always hold each other that each other's if they need help or whatever, we've never, never really feuded or anything

 

Speaker 3 [00:01:26] and they're always there for us. We're very privileged to have a family like we do.

 

Speaker 4 [00:01:32] Yeah, I would say that we're close and it's like, it's not one of those we're close to where we're always together or we're spending every moment together. But I know that in the blink of an eye, my sister, my mom or my dad would be there for me. Like I might not talk to my sister for a couple of weeks. But if I said to her hair, need a chat like, we could face time. And I know that my mom and dad have always been there almost innately when I needed them. But they also know that, you know, even though I'm busy doing the things I'm doing, they know that if they need me, it's a no brainer. Like, I will be there. And so I think that closeness, even though we're not in each other's lives every minute of every day. I think that we know that we can rely on each other where when I think of our family, I never think of close, even though they we are. I just thought of us as a fun family.

 

Speaker 1 [00:02:24] Claire, I'm going to turn to you and ask you to tell me a little bit about giving your your diagnosis of dementia and how that happened, but also what your response to that was.

 

Speaker 3 [00:02:37] I've been waiting for since so much of it and my family. Long story short, they told me I had it. I was devastated for about five minutes and then I said, I may have it, but it ain't getting me. And today it's not like when my mother was diagnosed or my sisters, because today they know what to do with people like us that we need. We need to be social. Don't hide. I am not ashamed of having my Alzheimer's for me so far. I have no complaints. It doesn't change your life that much. You lose on independence. But I like being alone in my health. I like to do all my own stuff. I pick up after pill. My biggest worry is people aren't expecting it because there's really nothing. I'm not sick. I can still do things I can. I can. I can do everything. Still nothing to be ashamed of. I am not ashamed of having Alzheimer's.

 

Speaker 1 [00:03:48] You have an incredibly positive attitude to Clara. Bill, when when you kind of came home and the news was given to you, what was your response and your reaction?

 

Speaker 2 [00:04:00] I can't say it was a complete surprise, but it kind of snuck up. I can't say it was in my mind that it's not going to happen. It just never occurred to me that it would happen. It kind of snuck up in what she just explained, the things she does and everything. It's it's hard to believe that she has it other than being forgetful and that there's no marks on her forehead or she doesn't like with a limp or something like that to make it known that there is a problem there. Anybody that would come in the house would never know. All these years knowing, say, for the past 20 about her mother and her sisters that it never I never looked ahead. Always she did. It was probably in the back of her mind, but it wasn't in the back of my mind until we got the word. I've seen her the way her sisters and her mother do when it was sort of crippling to them in a way. And it's not to her. It's declarative. She's so functional. It's hard to believe that she, I don't know. Maybe somewhere down the road things will change. But as far as when she was first diagnosed, nothing changed.

 

Speaker 3 [00:05:07] My mother always told us if there was anything bad happens, there's always something good in it. You just have to look a little harder

 

Speaker 2 [00:05:16] because of her attitude and what she says. It's hard for us, even the kids, to believe that she has it.

 

Speaker 4 [00:05:23] Of course, I think it was always in the back of my mind, and I was always worried because of my nana and my aunts. So I think that I was always hyper aware of it. And so I think that I watched for it again, I saw some of the signs and I was absolutely 100 percent devastated. It took me. It was in October, I think, and probably till about the summer it took me to accept it. And what I did was every morning when I ran, that's when I cried and I curse the heavens. I cast the universe because nobody deserves that, especially my mom. So it took me almost a year for me to accept it. I mean, I still functioned. I still went on with life. Nothing. You know, there were there were certainly days that were worse than others. But it took me. I was, yeah, I was angry. I was sad. I just wanted to protect her for me. I don't think I'm waiting for it. But when I heard it, I was ready to fight it. But as far as the diagnosis, I it scared me. It really scared me. But I never I just thought I had to pay attention more. And thank goodness Joanne was going to my mom's doctors appointments or investigating or reading everything so. I'm not an investigator or a researcher, I'm a doer. So when Joanne tells me what she's learned and this helps, I do that and when this helps, I'll do that.

 

Speaker 1 [00:07:13] How did you kind of come to terms as a family? Is it something that you talked about together as a family after the diagnosis? Or was it something that you just kind of individually process together and then talk together? Like, how how did you all kind of come to terms with it together as a family?

 

Speaker 2 [00:07:31] A few challenges here and there, but it's she's up and running every day. You know, it's she's making it easier for us. Her attitude is what's keeping us above water?

 

Speaker 3 [00:07:43] Wow. Thank you. So to me, you are the best in the world this year.

 

Speaker 4 [00:07:50] When we speak as a family, I think that we tend to be more individual would be my take on it. But then every once in a while, I will have a giant meltdown with Cuddy. She'll she's sort of my shoulder and my grounding source, and it's every once in a while. I just I fall to pieces and she's kind of one of the people that I lean on. It's easier for us because my mom is coping well being that again that I'm far away. I feel like my dad and Joanne are dealing with stuff, and then I get a report after. Not that that's a bad thing. But like Joanne said, all I can do is mail my mom cookies. I try and listen when I can, and I try and focus on I have two years, one month, my son don't speak. Listen, I don't speak.

 

Speaker 1 [00:08:44] And we often hear a lot within families with somebody living with dementia. That relationships can change, sometimes for the good, and sometimes things become a little more challenging. And so there's no judgment here, but whether things are right or wrong. But but things do change, you know? And so I just I just wanted to ask you as a family, have your relationships with each other changed since your mom's diagnosis?

 

Speaker 4 [00:09:12] I never thought that I didn't have a strong relationship with my dad, but I have a stronger one now. I think because everything was done through my mom. Would tell dad this or do this or whatever. But now I just talk straight to my dad. So that's kind of nice. That's that's a new avenue that wasn't there before, I guess, for Joanne and I, I don't think anything's changed. And my mom and I don't think, I don't think anything's changed. And I have to agree with Patti now. We reorganize and talk more to dad and and I, and it's the same thing. But then I then I feel guilty. I'm like, Well, I'm not talking to mom, and then I want to leave mom out of it, right? So I get this. So I'm like his mom on speakerphone because I want to make sure she's included in the plan. But yeah, no, I would have to agree. And it's cool that Patti said that because it's what I was thinking, but she articulated it well as now. My dad is the person we talk to all the time. And I think that's maybe one of the silver linings that that comes from this is that that has changed that dynamic and where we're spending more time with dad and with mom. The things that have changed are, I think that we still talk all the time and we still hang out and we go out shopping and stuff like that. I think I almost think we laugh more than we used to because we talk less about all the serious stuff and talk about all the fun stuff. So I think that's one of the dynamics, and I think that I cherish every moment more.

 

Speaker 2 [00:10:49] I really don't think they've changed much. We've always been close, so it's it's not like it brought us closer together. We couldn't get any closer than we are now, but no. Yeah, that's the day to day things and talking to them and keeping them updated. But other than that, it's status. Quality of life goes on and we like to see each other. We're dying to get the street party to the end. But other than that, no, we've always been close and that's the way it's going to be.

 

Speaker 1 [00:11:24] Has your sense of kind of who you are and and like, have you changed since your diagnosis?

 

Speaker 3 [00:11:32] Yes, I have. Yes, it did change because I am more social and more yaphe than I've ever been. I have never, ever had confidence in myself. Never because I was told from the time I could well when I started school and I was going to school part. But they they who were in my school told me. The teacher told me. She said, Oh, don't worry about that. You don't worry about that. Don't worry about that. You'll make a good housewife and a mother. I don't know. This did something good for me because it made me. Now, when I go anywhere, I have something I can talk about. There is something I do know something like, you know, and you really have really pushed that for me, and I will thank you till the day I die.

 

Speaker 2 [00:12:23] One of the things she stresses is the reason she's she likes helping people. She always did that. I always called her Joel Delbarton that listened to the sob stories, so she always helped her friends them and vice versa. But she's doing this also for her daughters. She's helping with your research and all that to help nail it down. Make a cure. Think about a cure or what can be done. And that's that's part of her initiative and that brings out her.

 

Speaker 3 [00:12:54] I want to get everything out there I can possibly give tours to. I don't know if they can cut my toe off and it'll make it some kind of fine for the Alzheimer's. They can do it. I just want to get something out there and I want the name to be changed, to be something that you can accept and you don't have to be ashamed of it. It doesn't mean I'm stupid or that, you know, like you've lost your mind like or something. I mean, and it's got a bad reputation, so we have to clean that up. I just want to do everything I can. So what if you've got so long that my girls get up that they can handle like I do or better? I just want people to know your life still goes on, you can still have fun, you can still live, you can still do silly things and have fun and never mind the stress of who cares what the heck they think of if my neighbor thinks I'm not OK, I'm fine.

 

Speaker 1 [00:14:01] So, Patti, I'm going to ask you as as the daughter who lives far away and knowing the challenges that come along with it. Tell me, tell me a little bit about your experiences in supporting your parents and your role and what that looks like for you.

 

Speaker 4 [00:14:20] I wish I could do more.

 

Speaker 3 [00:14:22] No, you do enough, I

 

Speaker 4 [00:14:23] try to I try and do what I can, you know, and work hard to to not be consumed with guilt like I. I can understand the geographical and I have to be confident in doing what I'm doing. I'm doing what I can and try and do it the best that I can.

 

Speaker 1 [00:14:46] Joanne, you're the daughter that lives in town. Tell me, tell me about about your role and what you know, what you do and what you play and and in supporting your parents.

 

Speaker 4 [00:14:58] But yeah, I feel like sometimes it is only me and I want to make sure I'm doing what I can because they don't want to have to be asking their friends. It's easier to ask your family, right? And I try to be available as available as I can, and then I get caught up in work. And sometimes I forget, and even today I was going to go. I went to go yesterday, but I just didn't feel like driving in the snow, which is ridiculous. And then so I said I'd go by today, but then I, I got caught up. I ended up working later than I thought it was going to work. And then my lesson got my writing lesson gradually. So I was rushing out there and then they took longer and then I felt guilty. So I think that I have a lot. I carry a lot of guilt and I live here and I feel like I'm doing enough and I feel like I'm never over there in enough. And so I say, and I think that because I'm the one that's here, I should be doing more and I should be like there every day.

 

Speaker 1 [00:15:51] What advice would you give to other daughters who are supporting, you know, maybe a mother living with dementia? And of course, you know, a father as well, right? Supporting parents, both of them. What advice would you give to other daughters?

 

Speaker 4 [00:16:08] I think just to follow their lead. My mum's the lead in her life and my dad. I don't want to say my dad the follower, but he's also letting her lead right now, too. And we just have to listen to ourselves and and do what feels right. And as long as everyone's safe and well-fed and warm, there's not much we can complain about. And like I said in the beginning, I was really devastated and it consumed me. And I think that that's okay because I think you have to feel it. And I want I would love for people to know that that's normal. Get through that, get through the motions with that diagnosis and learn and trust that there will come a day. You can talk about it without crying. And that's that's when you're moving forward and that's when the healing starts to happen. And that's when you see your healing starts to heal others.

 

Speaker 1 [00:17:06] Claire, do you feel like your role as a mother hasn't has changed with your dad?

 

Speaker 3 [00:17:10] Oh, I don't think so. No, not in the least. No. Like, they don't like Joanne when she comes over. She doesn't have a role over me or, you know, like that. It's one thing I can't stand. It's when people just. However, you're like, Oh, no, I can't afford my own tea anymore.

 

Speaker 1 [00:17:27] So, Bill, I'm going to ask you as the husband of somebody who you know, has a diagnosis of dementia and also as a dad, what advice would you give to other men? You know, other husbands see other men in supporting somebody with dementia just in this journey. What advice would you give patients?

 

Speaker 3 [00:17:50] You took the words right out of medical practice patients.

 

Speaker 2 [00:17:57] It's hard for me to give anybody advice because everything is going well for me. I will admit it's challenging, sometimes nerve wracking, but she keeps busy. I think she will go to vacuum cleaners on me. She's always doing something. She keeps herself occupied. I can leave the house, go golfing or be gone for three or four hours and not have to worry. Or cell phones are a good thing nowadays because we stay in touch and I can track her on mine if if I need to. I don't know what advice to give them as. I just hope that they they have somebody that accepts it like she does. I hope for their sake that they get one as good as I've got. Your time is going to be consumed because of it a little bit. Just get ready to accept there.

 

Speaker 1 [00:18:56] I'm going to. I just got a couple more questions, but I'm going to ask you, what advice would you give to other women who are mothers and who are wives who have a diagnosis of dementia?

 

Speaker 3 [00:19:09] Except that because it's not that bad, we forget things anyways, whether we have Alzheimer's or not, it doesn't matter. We can still forget. So just be patient. With the people around like me, like if anybody jumped on it right away, who wouldn't upset me because I know how to handle it. But I think just accept it and make the best look for the good points because there's a lot. Look at all the socializing I can do. You know, there's this group, I can go to that group I can go to and you know, and of course, you got to have a sorry bill. You've got to have a good partner sport person to. I mean, it's just without, you know, because he encourages me to do these things and like, you know, he backs me up. He doesn't make me feel guilty about 0.4. So to me, if anybody's diagnosed, they've got it. They just have to accept it. All I can say is when you get that diagnosis, I have good pictures of it because I've watched my mother. She lived to be 95 with it. Make the best of it. I take the medication for it, and I think taking the medication is a good thing. But I think the most important part is the person with it takes charge.

 

Speaker 1 [00:20:39] So it's been four and a bit years since Clara's diagnosis. How would you describe for each of you? How would you describe your family now?

 

Speaker 3 [00:20:52] Even closer,

 

Speaker 2 [00:20:54] I don't think, like I say, I don't get to go much closer.

 

Speaker 3 [00:20:57] No part, never. Yeah, everything we did together, we had

 

Speaker 2 [00:21:01] lots of fun together going up. We just all we have to be more aware now and go with her and. Keep her happy.

 

Speaker 4 [00:21:14] You know, I think it's strengthened the bonds we have. So I think it's it's strengthened our family. So I guess ultimately it's making us closer, but it was just kind of we're just floating and doing our own thing and staying connected and that foundation held us. But then all of a sudden it just pulled us closer. And I think that now we're we're not drifting as much, not in a bad way. We were just all doing. But now it just brought us that much closer and in awe that that those ties are tighter.

 

Speaker 2 [00:21:49] Anybody that's listening to this podcast? At the end of it, what we've all talked about. Go out there or come and meet us in our Northwest Dimension working group, the Dementia Cafe, the Alzheimer's, all affairs roll out. Get out there and take part of them. They're out there for you. You're going to meet new people and you're going to make new friends, and that's going to help you through the journey.

 

Speaker 5 [00:22:19] Thanks to Clara, Bill, Patty and Joanne for joining us in this episode. And to Elaine, where host, you know, in case you missed it, Clara was also part of our preceding episode Solidarity of Sisterhood that you might enjoy listening to. Lots is happening at dementia dialog with three series now in production. Parts of dementia, LGBTQ to us and our French language series, our fall season is shaping up. Please share your feedback and suggestions with us at dementia dialog. At Lakehead, you see a following and liking us on Facebook and retweeting on Twitter helps us reach more people thanks to the Center for Education and Research on Aging and Health at the university. Our institutional partner into the Public Health Agency of Canada. My name is David Harvey.