Episode 3

Hosted by Debra Sheets, a nursing professor and researcher with the Institute on Aging and Lifelong Health at the University of Victoria.

Produced by Jenni Schine (jennischine.com); sound design by David Parfit (davidparfit.com); executive producer, Suzanne Ahearne (UVic.ca).

Storyteller bios and episode transcripts to come

This series was made possible by the University of Victoria, with funding from the Social Sciences and Humanities Research Council, The Alzheimer’s Society of Canada, The Alzheimer’s Society of BC, and Michael Smith Health Research BC.

Transcript

Debra 00:04:

This is Call to Mind, a podcast series from the University of Victoria, audio stories of love and memory loss.

Brian 0:22:

<singing> I was born one mornin' when the sun didn't shine I picked up my shovel and I walked to the mine La, la, la...

Margie 00:32:

Sounds good! My name is Margie Noonan, and I'm 80 years old. I'm speaking with my husband, Brian, and I'm recording this interview in Victoria, where we live at our home. So how does the banjo ukulele fit into your life? <laugh>

Margie 00:57:

I don't use music. I just have it in my brain. If people can get music into their brain, then that I think is a wonderful thing to have if you have dementia as I do.

Debra 01:14:

Hello, I'm Debra Sheets, a professor of nursing and host of Call to Mind. In this series, people living with dementia record audio diaries and conversations about their lives during the pandemic. Brian has been singing since he was an altar boy. Lucky for him, he's got a musical family, some who live right upstairs. Brian tells his wife Margie his secrets for finding happiness and why playing music and singing in a choir is a better team sport than football.

Brian and Margie 01:45:

<singing> Swing low, sweet chariot. Come for to carry me home. Swing low, sweet chariot. Come for to carry me home.

Brian 02:04:

I'm a little bit long on the tooth these days because I'm 83 years. Is it 83 - 83 years old? That's right. And I have a little trouble speaking. But sometimes I can make sensible noises and I try my best anyway. But anyway, Margie and I have had a wonderful marriage. It's been going on for 60 some years. Isn't it?

Margie 02:29:

60 years this summer.

Brian 02:30:

Oh, 60 years. Yeah. And it's been wonderful. I fell absolutely in love with Margie for the first time I've ever saw her. And that was 60 years ago. But we've had a wonderful marriage, and we plan on having at least another 40 or 50 years. At least I I'd like that. I went and stupidly played football in university and all the rest of it. So, I have trouble speaking because I've got concussions and stuff like that that you get when you play football anyway, I'll pass it back to Margie

Brian and Margie 03:03:

<singing> Well, I looked over Jordan, And what did I see, Comin' for to carry me home, A band of angels comin' after me, Comin' for to carry me home.

Margie 03:22:

So a little bit about our family. We are very fortunate to have four wonderful daughters and three of them actually live here in Victoria. One of them, one family lives above us. We share the same house, and that is great. The other two live in a house about seven minutes walk away. So, we see the three families quite a bit. And our fourth daughter lives in California. So, we do also have 15 grandchildren, and we're very lucky to have two great-granddaughters. One of them we just met for the first time yesterday.

Brian 04:09:

They are really incredible little girls.

Margie 04:12:

So that's a little bit about us. We're both retired, of course. Brian practiced law for maybe 40 years.

Brian 04:23:

I don't know. I've forgotten.

Margie 04:24:

<laugh> And I was a teacher. I taught mainly, I would say, most of my years in the areas of learning assistance in special education.

Brian 04:39:

Turned it off?

Margie 04:39:

Lost it. Maybe it never even recorded. <laugh> God. After all of that. Oh, maybe it is still playing. I'm going to turn it off now.

Margie 04:55:

We're gonna do a little recording now. Our daughter Linda's over. She comes over every Wednesday morning, which is wonderful for Brian and I.

Brian 05:06:

She's got a great big guitar in there.

Margie 05:08:

<laugh> So she brings her harp over with her and we just sing along a few songs. However, it goes.

Margie 05:17:

Can we start with Danny Boy? Okay.

Brian and Margie 05:21:

<singing> O Danny boy, the pipes, the pipes are calling From glen to glen and down the mountainside...

Margie 05:34:

How would you say that, you're now coping with dementia, what are the things you like to do now in your daily life that maybe weren't part of your daily life at one time?

Brian 05:49:

Well, I got advice from people telling me that riding a bicycle is always a good thing to do. You have to keep upright and things like that. The other thing is learning a musical instrument and I had played a piano and done things like that before. But now I have this, what's it called? Banjo ukulele. have been hammering away on that since August. And I think I can make some intelligent noises on it. Actually I can play the banjo ukulele better than I can talk. <laugh> So it's doing one thing for us anyways.

Margie 06:35:

So that was certainly something new that you learned, wasn't it?

Brian 06:39:

Yes.

Margie 06:39:

That you have found to be very, very helpful. In fact, I think you told me once, if you didn't sort of play the banjo ukulele, first thing in the morning for a while, you just felt that you weren't yourself.

Brian 06:54:

Yes.

Margie 06:54:

That you really think it's important.

Brian 06:56:

So I get up and I wake everybody up by playing the banjo ukulele, and everybody really loves to be woken up that way. <laughs>

Brian 07:05:

Isn't that right?

Kathy 07:06:

It's very pleasant sounds coming up.

Brian 07:08:

Very pleasant.

Kathy 07:08:

Yes, you can never really go wrong.

Brian 07:10:

That's this is our upstairs daughter.

Kathy 07:11:

Daughter.

Brian 07:11:

She is upstairs, and she really appreciates it. She appreciates this banjo ukulele so much that she went out and got one.

Kathy 07:27:

Well, no. My mother gave me her ukulele. So I've been learning how to play on that. And dad has actually helped me out a lot in learning. I'm not quite there yet.

Brian 07:39:

But she's very very musical and she loves playing different thing. So she's helping us out. So, there's Kathy and me.

Margie 07:52:

And then, of course, Linda comes over with her guitar.

Margie 07:56:

So we've got a fairly musical family, which has really been a very supportive thing. So what do you want to play now? Do you want to do Swing Low or do you want to do Whiffenpoof? Or what do you wanna do?

Brian 08:08:

Whiffenpoof.

Brian 08:12:

Whiffenpoof comes out of the universities. Every university you go to, it's always the Whiffenpoof song sung by somebody.

Margie 08:20:

So it's an old favorite of yours from many years ago.

Brian 08:23:

It came initially on Yale University in the States.

Margie 08:26:

Yeah. That's true.

Brian 08:27:

Hundred years old

Brian and Margie 08:30:

<singing and playing ukelele> From the tables down at Mory's, To the place where Louie dwells, To the dear old Temple Bar we love so well, Sing the Whiffenpoof assembled, With their glasses raised on high! And the magic of their singing casts a spell.

Margie 08:55:

Does playing the banjo or singing, how do you feel about that?

Brian 09:01:

Oh, I feel really, really good and I don't come out and start singing instead of talking, but I just tell them, I say, you know. It depends how close I am to the person.

Margie 09:14:

Okay. But just in day-to-day life, when you're not - the only one around is me, do you like playing the banjo ukelele?

Brian 09:23:

Yes, I do. Yeah.

Margie 09:25:

And how does it make you feel?

Brian 09:25:

It's very comforting and it makes me feel confident.

Margie 09:29:

Yeah. Yeah.

Brian 09:30:

For that one ability, and I think I'm pretty good too, as to playing the banjo. Maybe you wouldn't agree.

Margie 09:40:

<laugh> No, I think you're great. <laugh> I know I can't do it. That's for sure.

Brian and Margie 09:46:

<singing> We're poor little lambs who have lost our way Baa, baa, baa We're little black sheep who have gone astray Baa, baa, baa

Margie 10:11:

Then the other thing I'm just looking at, I'm sitting on the couch beside Kathy, we have, have our dog, Che. And what's your role with Che would you say Brian?

Brian 10:20:

Che. He's named after Che Guevara. And what's my role with Che?

Margie 10:27:

Yeah.

Brian 10:27:

We took Che from -

Margie 10:27:

Cuba.

Brian 10:27:

Cuba. And he was a street dog in Cuba. We were allowed to take him home, and we did take him home. We've had him for seven -

Margie 10:39:

I think six, yeah. Six or seven years, right?

Brian 10:41:

Yeah, he did. He's been a great little dog. Aren't you?

Margie 10:46:

And Brian basically feeds him, you know, gets some dinner. That's his responsibility and that's been wonderful for me too!

Brian 10:58:

Anyway, we've always had dogs because I've been crazy about dogs. I can talk to dogs more than I can talk to anybody else. And I think dogs, they understand that I don't make real sense, but anyway, they can read me.

Margie 11:26:

Brian, we're gonna do another recording today. Are you ready for that?

Brian 11:33:

Well, I guess so. Yes.

Margie 11:35:

<laugh> We know that it's important for you to speak about your experience with memory loss.

Brian 11:41:

Yes, I have.

Margie 11:42:

Yeah, and why do you think it's important for you to talk about memory loss to people?

Brian 11:49:

Well, so that other people if they have memory loss are more comfortable with it because I am comfortable with my memory loss as long as I get an opportunity to tell people that I've gone through this concussion thing. And, I've had several or almost many concussions when I was playing sports and football. Because I was fine going into university, and I know my memory was good coming out of high school. But that's when I really started playing football in earnest, and that's when my memory started deteriorating because I simply wanted to be a good football player.

Margie 12:39:

Now that you're older, you can look back and realize that playing football as much as you did did result in problems with your memory, but at the time of course, I don't think that you felt you had memory loss.

Brian 12:56:

I didn't relate it.

Margie 12:58:

No, you didn't relate it to the football. So I'm just thinking, when did you start to recognize that it was a bit of a problem and did you keep it a secret for a while? Certainly, as your wife, I don't recall any discussion of memory loss in the early days of our marriage.

Brian 13:19:

No, that's true.

Margie 13:19:

And certainly not till you retired. Really?

Brian 13:22:

Well, I wanted to hang on to you as a wife. I didn't want you walking away. <laughs>

Margie 13:28:

And, oh, dear. Anyway.

Brian 13:32:

Yeah. Anyway, I don't remember, you know, as far as an age. But it would be when I was entering into my BA. Not seriously, but I just thought of it. It was kind of funny, but anyways, it wasn't serious. But when I went into law school, I knew it was happening to me then. I wasn't sure why, but the football coach, for instance, at Dalhousie, every time I made a tackle or a hard tackle or whatever I played defensive linebacker he would get me off the team and he would look me in the eyes and say, "How are you?" I thought that's a funny thing to do, but that's what he'd do. He'd grab me by the shoulders and give me a little shake and say, "How are you?" And this happened, and I'd say, "I'm fine. What's the matter with you? <laugh> I mean, why are you doing this to me?" But I guess he could recognize that maybe I was hitting the line a little bit too hard.

Margie 14:41:

Yes. Yes. I think you're remembering a lot of those details now that, you know at the age that you are. You recognize that you have memory loss that's right.

Brian 14:57:

Yeah.

Margie 14:57:

For a long time.

Brian 14:59:

No, I didn't. When it started becoming obvious, then I would sit. I would say that, well, you know, I got knocked on the head too often.

Margie 15:10:

I see.

Brian 15:10:

And I told people that.

Margie 15:12:

Okay.

Brian 15:13:

And I'm not ashamed of it. I'm just thinking boy, that was a stupid way to way to go to university and get your head knocked off.

Margie 15:29:

So one of the things that Brian and I like to try to do every day, or at least every second day is to practice our songs for the VIM Voices in Motion choir and the choir practices are by Zoom on Wednesday afternoons. And, so we're just gonna try and practice a couple of songs today.

Brian 15:51:

Usually for the first time.

Margie 15:53:

Usually. Yeah. Summer. Well, maybe not the first time. So anyway, we'll just maybe get going with one of them and see how it goes. We are now being able to practice with video, singing the baritone part. That's what we listen to and try to join in with. So just let me try to find it here on the computer where oops it says - Oh, that's it Lean on Me. Okay.

Brian and Margie 16:38:

<singing> Sometimes in our lives, we all have pain, we all have sorrow But if we are wise, we know that there's always tomorrow.

Margie 16:54:

How do you feel that COVID has affected things for us as a couple and maybe for you as a person? I don't know. Would you say that COVID's made a difference?

Brian 17:05:

Yes. Yes, it has. Well, I've always sang with choirs pretty well all my life and as have you Margie, But it's a little different playing with the -

Margie 17:19:

Zoom.

Brian 17:19:

Zoom <laugh>.

Margie 17:20:

Yeah, that's right.

Brian 17:21:

But anyways, it's very, very, very good for me. And it helps me out just the same way riding a bicycle helps me out with my brain.

Margie 17:30:

Right, right. I think that I'll just pick up on that a little bit. For me, I don't think COVID has made a huge difference in our lives. We've still been able to get out and go for walks and life is not that much different. But the big difference, as Brian mentioned, is our singing with a choir. It's not the same on Zoom as when you're actually sitting side by side with people who are singing the same part that you are. So that's been the most difficult thing I think for us.

Erica 18:09:

<listening to zoom video and singing along>. Okay. We're gonna do some warmups. The exercise we've done it before goes "zing-ee, zing-eh, zing-ah, oh". Oh, okay. Let's try that. Let's go down little bit "Zing-ee." So, "ee, eh, ah, oh. Zing-ee." We'll do it a few times. So we get used to it. And, "zing-ee, zing-eh, zing-ah, oh". From the top. That's great. Okay. So we're gonna start with a song called We Rise Again. I love this song. So here we go. I'll sing it, and then you can sing it after me.

Erica 19:00:

When the waves roll on over the waters...

Margie 19:10:

With the zoom practices. I just sing baritone with Brian.

Erica, Brian, and Margie 19:31:

<Singing together> We look to our sons and daughters To explain our lives As if a child...

Margie 19:31:

A new appreciation for me as the caregiver is certainly the fact that I've been at home so much more. And I think that it's really helped me accept Brian's diagnosis of dementia and be able to support him more and to learn, to understand and appreciate the struggles that he has just by being here and our life slowing down a bit. And, so COVID's had a silver lining for sure.

Brian 20:03:

And we go over a number of songs every morning.

Margie 20:05:

Yeah, we do a lot of singing together, so that's been great. So what? Do you have anything you'd like to add Kathy at all?

Kathy 20:14:

About COVID? Well, I think in some ways it's been a good thing for dad because mom is home more as she mentioned. So from that point of view, I think it has been good.

Brian 20:28:

Keeps me out of the pub.

Kathy 20:30:

Yeah. Keeps dad out of the pub. Now mom always knows where he is cause she's around. Without dad's bike and his best friend, Che, and his ukulele, he wouldn't have nearly as much to fill his days. He seems to be busy with the three of them.

Brian and Margie 20:49:

<singing> Remember me when you come into your kingdom. Jesus, remember me when you come into your kingdom.

Margie 21:04:

What would you say makes you feel strong now with your memory loss? What helps you, for instance, when, you know, days when maybe your speech doesn't seem as strong? What do you like to do instead of talking?

Brian 21:23:

Well, I love riding my bike.

Margie 21:27:

Yeah.

Brian 21:28:

And I have to make decisions on the bike, you know.

Margie 21:36:

You have to be thinking all the time you're riding and focusing.

Brian 21:39:

Well, you don't. It's not called thinking. It's just reacting.

Margie 21:41:

Reacting.

Brian 21:43:

And that was really good for me.

Margie 21:45:

Yeah. Yeah.

Brian 21:45:

Because I enjoyed that reacting. I didn't have to say, "Oh, oh, maybe I've got to move. Turn my head, or not my head, but my wheel, my front wheel. I've gotta turn it to the left in order that I can keep my balance." You don't do that.

Margie 22:04:

Yeah. Yeah.

Brian 22:04:

That just comes up automatically. And, so I think that really helped me the bicycle. I've rode a bike, you know, or a tricycle or a bike or whatever it is all my life. I ride the bike every day on one or two occasions. I go and get groceries sometimes. Not huge groceries, but it's helpful.

Margie 22:32:

You haven't driven for maybe about five or six years now. So the bike has just been wonderful for you to keep your independence and get out on your own and get fresh air. But also helping out with getting the groceries as you say.

Brian 22:51:

Yep. No, I agree with my wife. It gives me a good thing to do, and it's a good exercise.

Margie 23:09:

Do you have any advice for somebody that has dementia? What would you say to them?

Brian 23:15:

Well, I would say that having dementia is not that difficult. And, I fill up my time with my banjo or my banjo ukulele and riding the bicycle and keeping as busy as I want to keep to. And I'm feeling really good about that because I'm not - I don't know. I've run outta words.

Margie 23:50:

So, basically, it sounds like you feel that people with dementia just should find something that they like doing and do it, which is what you do.

Brian 24:03:

Yes. And I think they should find things that really interest them and do those things.

Margie 24:16:

How do you feel when you sing?

Brian 24:19:

I feel good when I'm singing if I sing what I sing when I was a little kid. I sang over CBC in Christmas morning one time. My mother, she was proud of my singing. She wasn't at all proud of my football.

Margie 24:37:

She preferred you sing than play football.

Brian 24:39:

Oh yes. Yes. She didn't like it at all. <laugh> I sang Panis Angelicus for about six different other churches. And, I loved doing that.

Margie 24:49:

Yes, you love singing Panis Angelicas. In fact, I often hear you singing that. Play it on your banjo.

Brian 24:57:

Okay. Ready?

Margie 24:58:

Yeah, you go ahead.

Brian 24:59:

Okay. Wait a minute.

Brian 25:09:

<sings> Panis angelicus Fit panis hominum Dat panis coelicus Figuris terminum O res mirabilis! Manducat Dominum Pauper, pauper

Debra Sheets, host 25:37:

Margie and Brian are back to singing in person with their favorite choir: Voices in Motion.

Debra 25:51:

This podcast series was produced by Jenny Schine. Sound design by David Parfit. Executive producer, Suzanne Ahearne. And I'm Debra Sheets, professor of nursing and research affiliate with the Institute on Aging and Lifelong Health at the University of Victoria. Caregiving is hard, even though it brings joy and meaning. We hope this podcast gives you a deeper appreciation for family caregivers. Thanks to other members of the podcast team: our research assistants, Ruth Kampen, Cynthia McDowell, Matt Cervantes, and Chanel Mandap. And thanks to the Voices in Motion choir in Victoria. To see photos, read storyteller bios, and access episode transcriptions, go to our website at calltomindpodcast.com. And for more resources and supports go to alzheimer.ca. This podcast series was made possible by the University of Victoria with funding from the Social Sciences and Humanities Research Council, the Alzheimer's Society of Canada, the Alzheimer's society of BC, and Michael Smith Health Research BC.