Episode 2

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 Sheets 00:04:

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

Daphne 00:14:

Okay. So we are going to introduce ourselves. Okay.

Miki 00:19:

Hello everybody. Is there anybody there?

Daphne 00:25:

It doesn't matter. You're not speaking to anybody.

Miki 00:28:

Oh, okay.

Daphne 00:29:

We're just recording this.

Miki 00:30:

Okay.

Daphne 00:31:

Come on. Okay. We're trying to get the dog on the couch. Come on. There we go. Okay. That's April.

Miki 00:39:

Beautiful little dog.

Debra Sheets 00:47:

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. We're drinking lemonade with Daphne and Miki at their home in Victoria. Miki began her career in the military, but both their lives have been dedicated to advocacy, social justice, and mental health. This is their story about forging families and staying calm and in love throughout the seasons.

Daphne 01:19:

Okay. Go ahead. Just talk. Talk at your own speed and say who you are.

Miki 01:23:

My name's Miki and I'm living in - where do I live? Hmm. Here's a question,.

Daphne 01:35:

Victoria.

Miki 01:35:

Victoria. And we're getting ready to go and get our shots. Hopefully, that'll be really soon.

Daphne 01:45:

Mm-hmm.

Miki 01:45:

That will make a lot of change in our life.

Daphne 01:52:

Boy, we hope so.

Miki 01:54:

Yeah.

Daphne 01:54:

It will. It will. Once we have the second, for sure, right?

Miki 01:59:

Yeah. We have a lot of friends.

Daphne 02:02:

We have a lot of friends. We have been together for?

Miki 02:09:

Just a sec. Let me see.... it's 42 years.

Daphne 02:17:

It is 42 years.

Miki 02:19:

It is.

Daphne 02:23:

You know, I actually hate that word journey, to be honest with you. I know it's the word that gets used, and I can't really think of a number one that fits. But I guess, because we've done so much traveling, the word journey to me has very positive, exciting connotations. , in terms of Alzheimer's, just doesn't. There has to be a better word besides journey. So what does journey mean to you in this context?

Miki 02:58:

It's not - I'm just moving is what I feel right. And I'm doing what works.

Daphne 03:08:

Right. Getting by.

Miki 03:11:

Yeah, and I know that I can't do the things I used to do. You forgot the kleenex.

Daphne 03:20:

I know I forgot to bring it. Miki's a crier, but Miki's always been a crier. This isn't a new thing for her. She's somebody who, you know, cries through all the hallmark commercials.

Miki 03:35:

No, I don't.

Daphne 03:36:

Yes, you do. So do you remember when we met?

Miki 03:45:

Oh, did I ever?

Daphne 03:46:

Tell me.

Miki 03:48:

Okay. We were playing cards in, at our friend's place. We were living in, we were living in... where were we?

Daphne 03:59:

Nelson.

Miki 03:59:

Nelson. There. We figured it out. <laughs> And we were at this, it was all women and we were playing cards.

Daphne 04:16:

I think it was poker.

Miki 04:17:

Poker. We were playing poker. And I had met Daphne earlier in the day, but I had been watching her for quite a while. So she said she wanted to go to cool off because she's a person that is just like a little hot something.

Daphne 04:53:

Furnace.

Miki 04:53:

Furnace. She's a furnace. And excuse me, let me start this again. I had run my finger across the back of her neck, front at the office. And then I, you know, kinda looked at her and then I went to this game and she was there and we sat there with all the other players and stuff like that. And then she went for a walk.

Daphne 05:27:

What time of year was this?

Miki 05:31:

It was, it was warm.

Daphne 05:35:

It was what?

Miki 05:37:

Oh, it was warm or cold?

Daphne 05:39:

What was it doing outside?

Miki 05:40:

Raining? No, it wasn't raining. Snow. We had snow. Big snow.

Daphne 05:45:

Big snow.

Miki 05:48:

Yeah.

Daphne 05:49:

It was the Kootenays and it was December.

Miki 05:51:

Mm-hmm.

Daphne 05:51:

Big snow. Well, I went out the door first. I put my coat on and went out cause I was getting all hot and bothered. Right? And I went out the door.

Miki 06:08:

Yeah.

Daphne 06:09:

And then you came out the door after me and I went one way around the block.

Miki 06:17:

Yeah.

Daphne 06:17:

And you went the other way.

Miki 06:19:

Yes.

Daphne 06:20:

Around the block. And then what?

Miki 06:21:

We were - we went to your place.

Daphne 06:26:

No, not then.

Miki 06:26:

Oh, okay. I don't know.

Daphne 06:28:

No, we walked around. I walked this way and you walked this way and then we met in the middle under a street light.

Miki 06:35:

That's right.

Daphne 06:36:

In the snow.

Miki 06:37:

And we kissed.

Daphne 06:42:

We did! We had our first kiss in the snow under the street light.

Miki 06:47:

Yes.

Daphne 06:47:

Right. Then after the poker game.

Miki 06:53:

Yeah.

Daphne 06:55:

You came home with me.

Miki 06:56:

That's right.

Daphne 06:58:

And stayed.

Miki 06:59:

That's right.

Daphne 07:00:

And that was the beginning of our 42 years together.

Daphne 07:19:

Okay. Here we are again. I think it's recording. The little button is flashing. What would you like to talk about?

Miki 07:29:

One of the things that I did through my life, I played sports.

Daphne 07:37:

Mm-hmm. Let's talk about that. And baseball was your big love starting at a very young age. Well, how old were you do you think when you started playing baseball? Must have been elementary school.

Miki 07:53:

Yeah.

Daphne 07:53:

And that's where you got your name?

Miki 07:56:

Miki.

Daphne 07:57:

Miki mm-hmm. You were called Miki when you were young.

Miki 08:00:

Mm-hmm.

Daphne 08:00:

Your real name is Anne.

Miki 08:03:

Ann Elizabeth.

Daphne 08:06:

Yes, but somebody nicknamed you Miki because .... No? Oh, okay. Because you played the same position as Mickey Mantle.

Miki 08:24:

Oh, that's right.

Daphne 08:25:

Remember?

Miki 08:25:

Yeah.

Daphne 08:26:

Yeah.

Miki 08:28:

I didn't play with him.

Daphne 08:29:

No, no. But you played the same position he did. So you got that nickname when you were playing baseball.

Miki 08:36:

Yeah.

Daphne 08:38:

I had two sons.

Miki 08:40:

Yep.

Daphne 08:41:

Who were 10 and 12. They were in Vancouver visiting their dad. We never did sit down and have a conversation. You and I about, "so, Miki. How do you feel about raising two sons?"

Miki 08:59:

Mm-hmm.

Daphne 08:59:

Cause Miki had been a lesbian basically since - she told me once from the age of four, she knew.

Miki 09:08:

Mm-hmm.

Daphne 09:08:

For me, it was a whole new ballgame. Never been there. Never imagined being there. It was like totally out of the blue. So for her to be suddenly co-parenting two boys.

Miki 09:27:

Yeah.

Daphne 09:29:

Did we ever have that conversation? We never did. They just came home and we sat the boys down. We said "Oh." Do you remember what we told them?

Miki 09:39:

I don't remember.

Daphne 09:40:

No. Okay. Well, we told them that we were now a couple and that we weren't gonna shove it down their throat. But it ended up that our house was a teenage drop-in centre because they didn't have any problem with it and they brought all our friends home all the time and had overnights. We went to all our parent-teacher meetings together as a couple. So that was the beginning in the snow in Nelson.

Daphne 10:23:

Okay. So let's bring it up to date here. Let's talk about how things are now. Like we have a beautiful home.

Miki 10:33:

Yeah. Okay. I really like being in my room.

Daphne 10:36:

Mm-hmm.

Miki 10:36

You know, like I do different things while in there. I like to be quiet.

Daphne 10:44:

Mm-hmm.

Miki 10:45:

With what I'm doing and that feels good.

Daphne 10:50:

Mm-hmm.

Miki 10:51:

This house is lovely.

Daphne 10:56:

Mm-hmm.

Miki 10:56:

And we're not in a place where everybody can look into the door.

Daphne 11:03:

No.

Miki 11:03:

All of that kind of stuff.

Daphne 11:05:

So it's private.

Miki 11:07:

Yeah.

Daphne 11:08:

Mm-hmm.

Miki 11:08:

We like the private. We've been together all this time.

Daphne 11:15:

Mm-hmm. 43 years this year. Yep. We have.

Miki 11:26:

And I love being here.

Daphne 11:27:

Mm-hmm.

Miki 11:28:

We do things together.

Daphne 11:30:

Mm-hmm.

Miki 11:32:

That part is nice to me.

Daphne 11:34:

Mm-hmm.

Miki 11:34:

Sometimes you go and do something.

Daphne 11:38:

Mm-hmm.

Miki 11:38:

Because you help other people like I used to do.

Daphne 11:45:

Mm-hmm.

Miki 11:45:

Right?

Daphne 11:46:

Mm-hmm.

Miki 11:46:

If I'm at home, that's fine.

Daphne 11:50:

Yeah.

Miki 11:51:

And I don't feel like I need to go anywhere or go for a walk and not know where I am or anything like that.

Daphne 11:59:

No.

Miki 12:00:

None of that happened.

Daphne 12:00:

You're happy being at home.

Miki 12:02:

I'm happy being at home.

Daphne 12:03:

Right.

Miki 12:03:

But this particular area.

Daphne 12:05:

Mm-hmm.

Miki 12:05:

It makes it easy.

Daphne 12:09:

Mm-hmm.

Miki 12:09:

To know...

Daphne 12:11:

Where you are.

Miki 12:13:

Where I am.

Daphne 12:15:

Mm-hmm.

Miki 12:18:

So every time I do something like that - I don't have to ask anybody.

Daphne 12:24:

Right.

Miki 12:26:

I'm slowly learning, getting to know people.

Daphne 12:30:

Mm-hmm.

Miki 12:30:

But I'm still...

Daphne 12:32:

People in our neighbourhood.

Miki 12:35:

Yeah. In our neighbourhood.

Daphne 12:36:

Mm-hmm.

Miki 12:40:

We've worked it out, you know, about how we are and we have a clear sense of what I'm like and what she's like. Well, I think I've told you anyway, that I do like some alone time. We don't have the same choices. We have two - what do you call them?

Daphne 13:06:

Televisions.

Miki 13:07:

Televisions.

Daphne 13:08:

We have totally different tastes. Well, not totally. We both love British shows and there's lots of stuff that we watch and enjoy together.

Miki 13:16:

Yeah.

Daphne 13:17:

But then there's stuff that we do separately. I'm an HGTV girl. She's a Star Trek girl. So, you know, we have two TVs and she gets to watch her TV.

Miki 13:28:

But if I leave, I'm going to go into the sky.

Daphne 13:37:

You're gonna, yeah. Mm-hmm. All right then.

Miki 13:41:

Yeah.

Daphne 13:45:

Partly because I'm a Leo, I think.

Miki 13:48:

My God, is she ever.

Daphne 13:49:

Oh, she is. But I think patience has never been my strong suit.

Miki 13:58:

Oh, yes. I can tell you about that.

Daphne 14:01:

Yeah. OK. However, I have to say, in the last year, I have had to learn and work on patience.

Miki 14:20:

Yeah.

Daphne 14:25:

You know, I use little tricks like counting down or leaving the room. I mean, all the little tricks of the trade that I've read about out and talked about with my support group and with courses that we've taken at the Alzheimer's society and so on. It's a lifelong challenge, but I am so much more patient now than I was even a year ago. I am way more patient than I used to be. And she doesn't see a lot of it maybe, but anyway, it's so much better.

Miki 15:11:

No, I have noticed your changes.

Daphne 15:17:

Have you?

Miki 15:18:

Yeah, and I also started to focus on myself.

Daphne 15:25:

Mm-hmm.

Miki 15:25:

So when you're - I don't know how to say this nicely - if you're ahh <screech sound>. I just walk away from you.

Daphne 15:39:

Yeah. But I'm not like that.

Miki 15:41:

No, you're not like that.

Daphne 15:41:

Anywhere near as often as I used to be.

Miki 15:45:

No, God.

Daphne 15:46:

Learning to accept help. It's a big one. And that is another one that I, lifelong, you know, people offer and I'm always the one that helps other people instead of being the recipient of help. But, you know, in this situation you kind of have to. And I'm trying to learn that one, too.

Daphne 16:15:

You know, I have a lot of guilt about these months of COVID because I feel really badly that I haven't, you know, gotten Miki out of here.

Miki 16:27:

Oh, thanks.

Daphne 16:28:

No, no, no. But like two or three days a week that we haven't gone off and done something exciting.

Miki 16:34:

Oh, just the two of us.

Daphne 16:35:

Yeah. To go off and you know, you know, just do more stimulating things. Right? I'm always tired. I just feel like I'm on a base level of exhaustion that is unheard of, for me, I'm pretty much an ever-ready bunny, but not this year.

Miki 17:01:

You need time for yourself.

Daphne 17:02:

Well, I know, but right.

Daphne 17:12:

So it's been about six months since we did our last recording. So there have been some fairly major changes since then, which I'm sure you'll notice as we go along. Changes, eh big changes, big changes.

Miki 17:32:

Yep.

Daphne 17:33:

Our relationship as a couple has certainly changed.

Miki 17:39:

Yeah.

Daphne 17:40:

From, you know, a fully functioning relationship to, you know, a very caring, gentle, loving relationship. But not the way it was, is what I'm trying to say.

Miki 17:56:

Mm-hmm.

Daphne 17:56:

Well, you know, like most couples as we were together all those years, we sort of had different things that we took care of. I loved to cook. Miki wasn't. She never loved cooking. But when we met, I said, "well, okay, you don't like cooking, but can you read?" And she said, "yes." And I said, "well, then you can cook." And I gave her lovely cookbook and she actually did some very nice meals over the years.

Miki 18:30:

God, I forgot all about that.

Daphne 18:31:

Uhhuh.

Miki 18:31:

Right now. I'm just-

Daphne 18:33:

I know. So cooking has gone by the board.

Miki 18:38:

Yes.

Daphne 18:39:

Because she can't follow the sequence of what to do next. The car was Miki's thing.

Miki 18:46:

Oh yeah.

Daphne 18:47:

And she would keep it clean. I don't keep it very clean. I'm sorry. And I also have a job where I'm delivering newspapers every week. So the thing gets filthy all the time. But yeah, the car was her kind of her thing. She would make sure the gas was full and the maintenance was done on time. And gosh, just the fix-it stuff. You know, Miki was very good at carpentry stuff. She built a jewelry box for me. She built a window seat with all storage and everything underneath it. She did all the crown molding in one of the houses that we lived in. None of it's possible now. There's just a lot. It is a lot.

Miki 19:41:

Yeah. For you.

Daphne 19:43:

Yeah. Well, it is. But it's in good cause. You being the cause.

Miki 19:52:

Yeah.

Daphne 19:56:

Are there things in our relationship that are still the same?

Miki 20:01:

Oh yes.

Daphne 20:01:

What would those be? What things are the same you think?

Miki 20:07:

Well, one is that we've come to a place of calm. We're not fighting. We don't argue. We don't do any of that stuff.

Daphne 20:21:

Mm-hmm.

Miki 20:22:

And I'm happy with that.

Daphne 20:26:

Mm-hmm.

Miki 20:26:

And we figure out how to do handle things that need to be done.

Daphne 20:35:

One of the things that has happened really in the last, I would say in the last year, even.

Miki 20:41:

For what?

Daphne 20:43:

Well, what you were just saying about. We don't fight anymore. We don't.

Miki 20:49:

Yeah.

Daphne 20:49:

You know, we, our relationship has not always been, you know, roses. Right. We have had many issues in our relationship and there were certainly times when it was stressful.

Miki 21:06:

Yeah.

Daphne 21:07:

To say the least. Part of it, I think is that I have somehow come to a place of learning patience, which has never been my strong suit, but I am calm. And I think because I am now calm, you are. Well, you've always been fairly calm. I mean, calm and cool and collected. Right?

Miki 21:36:

Yeah.

Daphne 21:37:

But I think our relationship has gone from being, you know, major highs, but also major lows. And now we're like on this lovely even keel.

Miki 21:51:

Yeah.

Daphne 21:51:

Right. This lovely sort of calm, loving place. Right?

Miki 21:57:

Yeah.

Daphne 21:58:

And we are affectionate with each other all the time. We tell each other, we love each other all the time. It's very calm and very loving and it's different than it's been. But I think that is the most significant change.

Miki 22:20:

Yeah.

Daphne 22:21:

Wouldn't you say in the last year? Well, in the last, yeah, I say the last-

Miki 22:27:

Maybe couple of years.

Daphne 22:27:

Maybe. So how has that change felt for you - that calmness?

Miki 22:36:

I feel it inside mm-hmm and I'm thankful for that.

Daphne 22:43:

I think the fact that we had a rather, maybe not tumultuous, relationship, but we certainly had lots of ups and downs in our relationship. Dealing with your dementia all these years, it's, it's been hard for both of us.

Miki 23:05:

Mm-hmm.

Daphne 23:05:

But somehow in this past year and, you know, I think part of it, believe it, or not might have to do with COVID because we have been so isolated. So we have had to be together 24 7, you know, with whatever it is that's going on with you.

Miki 23:31:

Yeah.

Daphne 23:32:

And I don't know, it's just kind of created this easy, calm, surprising, but calm environment between us. Right? Or in our home with our animals and everything. Right?

Miki 23:54:

Yeah.

Daphne 23:54:

Yeah, it's there. It's definitely a surprise because it has been and is really hard. I mean, everything's on my plate now. So that is a burden in the sense that there's a lot to keep track of. But nevertheless, we have come to this place of calm and loving.

Miki 24:24:

Yeah.

Daphne 24:26:

And affection and it's pretty special I'd say.

Miki 24:33:

Yeah.

Daphne 24:34:

It's quite amazing. Which doesn't mean that, of course, there aren't times when I'm not with you that I don't go screaming off into the woods because you know, sometimes I do, but not around you. Yeah. Not literally, but figuratively. People like yourself.

Miki 24:58:

Yeah.

Daphne 24:58:

Who are going through what you're going through. Do you have any advice for them? People who might be listening to this and down the road people who are going into, let's say an earlier stage of this.

Miki 25:13:

Yeah.

Daphne 25:13:

Or they know that they're facing that, what kind of advice do you think you might say to them or give them?

Miki 25:25:

I'm not sure that I have the abilities to respond to that. But I do know that I love my wife.

Daphne 25:42:

Mm-hmm.

Miki 25:47:

And I'm happy to talk to people. But I can't. I have to be there.

Daphne 25:57:

Mm-hmm.

Daphne 25:57:

Miki understands that this recording is to help other people, right. Going forward to help other people who are like me as a caregiver and like Miki is who has dementia. So she knows that doing this could help someone else. Right? You know, just by being that kind of calm and loving and supportive person.

Miki 26:31:

I would now want to tell people and talk to them whether I say the words right or not.

Daphne 26:47:

I mean, she's always been like that. People talk to her, you know. She has spent her life counseling people and people know they are safe with Miki. They are safe to talk to Miki. She's very, I would say in tune with people who are hurting or needing something, and we're talking about even now, when she can't really express herself very well. But if we're out somewhere and there's someone who is visibly upset about something, Miki is like tuned right in, she may not be able to say anything intelligible, but she is tuned right into how that person is feeling. Right? When they're upset or angry or loud noises, a plane going over. Now, I mean, a loud noise upsets you like, you'll hear a motorcycle and you'll get mad about that because it's an offensive sound to you. I mean it. But it never has been, you know what I mean? Like it's a very sensitive level of awareness of both sound and feeling that is very heightened, I would say, with Miki right now.

Daphne 28:05:

Is there anything we could tell people about keeping our love strong during this whole, like as people are going through what we're going through. Is there anything we can say to people about keeping our love strong?

Miki 28:33:

I'd have to think about that one.

Daphne 28:37:

We really love each other.

Miki 28:38:

Yeah, we do.

Daphne 28:40:

And I think we accept each other.

Miki 28:43:

Mm-hmm.

Daphne 28:43:

And we're in this together.

Miki 28:50:

Yeah.

Daphne 28:51:

Forever.

Miki 28:52:

Yeah.

Daphne 28:52:

Right. And that's the truth.

Miki 28:56:

Yeah.

Daphne 28:57:

Right? We have a strong love and we see other couples that are in the same boat that we are. Yeah. And we're all paddling like hell, but we are very sure in our love for each other. And that has definitely not changed.

Miki 29:20:

Yeah. That's true.

Daphne 29:24:

What makes you feel happy?

Miki 29:28:

You. <laughs>

Daphne 29:31:

Me. Thank you. <Kiss>

Miki 29:32:

I love you, Honey. Big time.

Debra Sheets 29:42:

Since their last recording, Miki and Daphne are back to enjoying more in-person activities, their love still strong.

Debra Sheets 29:51:

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 support 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.