Caregiving is hard. And journeying alongside a life partner with dementia is like watching your lover, and your relationship, slowly disappear in the rear-view mirror. It’s heartbreaking and you just can’t sugarcoat it. Then there’s all the practicalities and complexities of caregiving. It can be overwhelming. This is Gerri’s story about the heavy emotional work of caregiving. It’s also a story about finding rest and renewal with her husband Don in nature, with friends and through art and music…with a little help from singer and composer, Jeremy Dutcher.

This 2025 podcast series is made possible by the generosity and creativity of the participants in Mariko Sakamoto's research project, and by the University of Victoria, with support from the Social Sciences and Humanities Research Council, and with Scholar Award funding from Michael Smith Health Research BC/Alzheimer Society of BC.

Go to CalltoMindPodcast.com to see storyteller photos, read episode transcriptions and learn more about our research project.

Host: Mariko Sakamoto, assistant professor of nursing, University of Victoria

Producer: Jenni Schine

Sound designer: David Parfit

Executive producer: Suzanne Ahearne

Credits:

Take My Hand by Jeremy Dutcher

Lyrics by Jeremy Dutcher, Basia Bulat and Maggie Paul

Courtesy of Secret City Records

This is Call to Mind, audio diaries of love and

memory loss. I'm Mariko Sakamoto, assistant professor of

nursing at the University of Victoria, and host of Call to

Mind. This podcast series is a deep dive into the experiences

of caregivers. It's about the importance of being heard and

being listened to. Here we bring you intimate audio diaries

recorded by caregivers of family members living with Alzheimer's

and other forms of dementia.

Our relationship has now come into a new phase of

caregiving for me, where that is my main goal in life, is to look

after Don and it's rare that he can complete a sentence. So, our

communication is very troubled, yet we do stumble through it.

So, our relationship has turned the tide of caregiving, and I'm

very grateful...very, very grateful that we had the time

together to form a bond beyond what we have now. I guess now

it's just come to making sure that everything just stays the

same, you know, like, I just don't want anything to get

worse. Who knows what will happen in the future?

Caregiving is hard, and journeying alongside a

life partner with dementia is like watching your lover and

your relationship slowly disappear in the rear view

mirror. It's heartbreaking, and you just can't sugar coat it.

Then there's all the practicalities and complexities

of caregiving. It can be overwhelming. You can hear the

fatigue in Gerri's voice. This is a story about the heavy,

emotional work of caregiving. It's also about finding rest and

renewal in nature, friends, art and music, with a little help

from singer and composer Jeremy Dutcher,

Don and I met in Edmonton, Alberta, many years

ago. It was actually July the first 1971 and I remember that

date because it was Canada Day, and at a park near my house,

they had tons of music, and it was the 70s, and they had really

good music and bands. And I was 14 turning 15, and Don was 17

turning 18, so he was an older guy with long hair, and he loved

music. And I was smitten, and he was smitten, and we did a dance

for 10 years, I guess, until we finally got married and settled

down.

I have Don beside me. You want to say something, Don?

Hello.

How was your day?

How was your day today?

How was your day Don?

Oh, not bad, played some cards and crib.

And what are you gonna do now?

Watch some hockey.

So who do you want to win?

Florida.

You want Florida and I'm gonna go for New York Rangers.

Okay.

okay, how do you feel like everything's going? Okay?

Yeah, not too bad.

That's good.

I'm feeling very overwhelmed with lots of stuff that's going

on in my life, and it's very hard to be patient with Don, who

really is somewhere around a five year old child at times.

And a lot of my caregiving ability is to sort of be before

Don, be with him and be after him. I have to, I have to really

know what's going on before, during and after. And meals have

to be early, so 7, 11, and 4, which means a lot of prep work

and a lot of cleanup. And then there's all the things that are

breaking that have to be maintained and feeling well

enough physically to do it all, and I'm tired. A friend just

texted me and said, Hey, I've got two tickets to the Rolling

Stones in Seattle. Are you free? And I went, yes. No. Anyways,

it's a roller coaster. Don has unfortunately become a very old

man, physically where he shuffles, he stoops, he needs

assistance with just about everything, and it's like

getting to know someone all over again when their physical

appearance changes, because that's not who they were for

most of their life. Before Don was ill with Parkinson's, he was

active outside with friends that he used to go golfing with. He

did love growing tomatoes. That was his sort of forte was

tomatoes. He walked fast with purpose, and now he walks slow

with uncertainty. So there's definitely a shift. This new

pattern that I am noticing, and I probably had this pattern for

a while. It is a go-stop energy, where there are certain days

where I'm chop, chop. Let's do it. Eight o'clock, nine o'clock,

I'm good, and I go and I go and I go and I go, and all the

things get done, and all the extra things get done or

started. And then at the next day or two, I am just doing the

bare essentials. So I found that was interesting, because I

thought maybe there's something wrong with my health, but it's

quite common for people to have that pattern, so I feel good

about that. I'm just going to embrace it and I'm going to just

go with the flow, notice it and be a witness to it.

I did a personality test when I was a nurse at during my career

and I'm an accommodator. That's what I am, and I think most

nurses probably are. They try and make everybody happy, and

sometimes there's a cost to that. I am feeling guilty, and

the reason I'm feeling guilty is because I'm having it's a

struggle to be with Don when he is so unhappy and so confused.

That's one thing I'm dealing with, is trying to be nicer to

Don because I'm just not very nice at times. And he's not very

happy. He's never really been happy. He's always been the

glass is empty, half empty, and anyways...had a fairly rough

weekend, and it just really made me feel like I am so freaking

done with this. I am tired of being a caregiver and not having

a loving partner. I'm not very loving to him. And I am more of

a mother than a wife. There's just really no solution.

My heart is so full of love right now. How can one be sad

and happy in such a short time? I lost two of my very deep,

influential friends lately, and I was very sad. You know, life

carried on, but while you're doing dishes or vacuuming or

looking after things, you're still holding that sadness. And

it is just such a stunning, beautiful day. Starting to see

the fruits of summer blossom and life everywhere is just a joyous

thing, and it is slowly turning the gage of sadness into joy,

somehow. It's a miracle, really, how that happens. And obviously

when I'm doing better, Don is doing better. So it's a

beautiful morning. Beautiful. Stunning. I would like to share

a song. Actually, it's lyrics to a song, that really express how

a lot of my feelings beneath the surface. And it's called Take my

Hand. And it's an amazing song. The lyrics go like this: Take

my hand and walk with me. Together, you and I. [music

playing and Jeremy Dutcher singing in sync with Gerri

speaking the lyrics]

Always remember sweetheart, I will always be there for you.

[singing] Weya heya, heya heyo. I would walk

through the night, Across the land to sea, And see you

standing there In new light, Take my hand, walk with me.

[Jeremy Dutcher's singing fades out]

And that sort of sums it up for me, because today, Don

needed a lot of walking help. Then I heard this song and was

reminded how it touched my soul. Jeremy is an amazing artist. His

lyrics of the song just sort of held me and also freed me in a

way, if that makes sense. Being a caregiver can be very

solitary, but the songs of the lyrics, really, they just

touched my spirit. Because we are all connected, and I know

I've said this before, we're all connected, and we all need to be

held in a certain way, whether that's by nature or by novels or

by music or by poetry or by reflection, words. And I just

find it's, it's very, very necessary to find that somehow.

And if you do find that, hold on to it just for a few seconds so

you can find relief and some peace.

I had someone come in and create a really beautiful forest place

that I Don and I could sit and just be right in the middle of

the trees on our property. And its level, so Don won't trip and

fall, hopefully. It is a beautiful space. And nature is

very restorative for me. And if he wants to nod off, great

you're right in the middle of the forest to nod off. What a

great place to have a rest. Two of my friends have passed away,

which is very saddening to me. Makes me feel a little bit lost,

and I'm sure that I will come to peace with it. There was a

beautiful butterfly that accompanied me while I was

resting in our forest, and I thought that was her spirit that

was coming to say all is well.

New challenges are that Don is very upset about the respite

coming up. This has been in the works for months now, and

probably the last two weeks or so, he's been packing and

unpacking, and last night, he said someone came into the house

and stole his wallet and sold his ID and stole his money. He's

very upset and angry. He doesn't want... he's like shutting down.

It's difficult to live with someone who is so confused and

upset. It's difficult enough when they are confused and

compliant, or they take your word as the honest truth, but

now he seems to not trust me and doesn't think that he's coming

home again after a week. What I am noticing is that I am very

tired and not sleeping great, but functioning well, if that

makes sense, I feel like the disease is taking from me, and I

have to still, you know, carry on. Things just have to be done.

So we'll see. I've got to get some good coping skills to get

me through the next week and get some sleep. That would be

paramount. And we'll see what tomorrow brings.

Evening of Monday night, eve before I go on my little hiatus,

only for four nights, but so much is going through my head

about, will everything be okay without me? I feel so sad

because Don just can't follow threads. But he is being a

trooper. He knows that it's going to be a couple of nights

away from me and home and his dog, and he hasn't been too

confused, just minor confused. So we'll see what happens

tomorrow. Sometimes I just want to stay home, bury my head in

the sand, but that's not life, and I know that I need to

nurture my relationship with my friends, and it's only four

nights, so we'll see what happens.

Good morning, we are now in Royston, so this is day one of

my respite day, and I'm in a car with my friend Deborah, who's

driving. Say hi, Deborah.

Hi!

And my other very good friend, Trish. Wanna say hi?

Good morning!

... and they're looking after me. I phoned Don this

morning, and he was very sad because he didn't quite

understand what was happening, and he wanted to know when I was

coming to pick him up, and I wondered if it was a mistake to

phone. Anyways, it is a gorgeous day today, and I feel very

supported with my friends. We've shared many teary moments, and

I've received many beautiful hugs.

Don is back, and he is so confused. It's unbelievable.

Four nights away really put him into a tailspin. He keeps asking

me what the plan is and if I'm going to dump him somewhere

else. And so I don't know I have to be patient and I have to be

kind and compassionate, because I know that he is slipping, and

I think, honestly, he is so much better with a routine and at

home. So I'm not sure if I will do any more respite at this

point. It was beautiful. It was wonderful. It was surreal. It

was almost otherworldly-like because there was no stress,

which was very different for me. I noticed that I ate so much

slower, and I noticed the foods that I love to eat like peanut

butter. You just can't eat peanut butter fast, right? And

just really slowing down to a minute cellular level where I

loved taking walks by myself through the garden and just

observed certain things. It was just so wonderful. But now I'm

back to reality, which is a good reality, but it's just a busy

reality.

Had an interesting thing happen this morning. Don got up and

asked me if I was intentionally making him miserable. So that

sort of opened up conversation as to why he thought that, what

things I said that might have triggered those feelings, and he

couldn't put into words why he thought that. And then I asked

him what he thought I was going through, hoping to start a

discussion the other side of the coin. And then I tried to

explain to him that why I think he's feeling that way is because

of the lack of the dopamine. And dopamine is such a strong

neurotransmitter in the brain for motivation and happiness and

joy and energy, and with his disease process, there's so

little of the dopamine left in his brain, and there's no

production being made. And I don't know if any, if he

understood any of what I was saying, but to me, it made

sense, and I've been trying to understand it more myself, so

that I don't take things personally, either from Don or

from myself. When I try to beat myself up, I beat myself up a

lot as far as why I'm not doing things, physical things when I

should be. Anyway, so just exploring what the physiological

reasons might be helps me understand it and depersonalize

it.

There seems to be a little bit of a change in Don,

unfortunately, and I think this is just the natural progression

of the disease of dementia, where he is getting more

paranoid. And unfortunately, a couple days ago was the first

time, at three o'clock in the morning, he threatened me with

death. So that's not good. He said he was going to, I think,

shoot me, which is ridiculous, because he doesn't have a gun

and has never had a gun, and doesn't know how to shoot a gun,

but something triggered his brain. And then there's

definitely a change in our relationship now it's like for

the first time, I seriously thought it would be so nice not

to have him around. You know, as far as the freedom I would have

and, you know, I wouldn't have to have things so scheduled, and

I could have freedom for the first time in my life, since

whatever you know, 40 something years. So I don't know what that

means, either if that's normal or not. Anyways, I'm just tired.

Just tired of it all.

A very, very quiet day today. Don was really hungover from

when he had his delusional episode. When was that? That was

yesterday, I guess, um, so unfortunately, it was not a good

day yesterday. He was very delusional. And I do have a

phone call out for my case manager. I have been waiting for

two days for her to get back to me, so I need to talk to someone

about getting him into placement. It's just not working

any longer, and it's a really hard call, and I don't even know

what that looks like, as far as you know, assessments, and I

don't know it's a whole new ball game, but it's time. I can't

watch him, 24/7, any longer. It's just not fair to him or I,

you know. People want me to do things with them, and I can't.

I've turned down half a dozen things with family members just

because he's too unpredictable. He gets very agitated at times.

He's delusional. So it's not fair for either one of us to

have a life like this, and I did mention it to him, and he did

agree that he would go to care. So that may change for sure. And

also he asked when I was going to Spain, and I said, Well, I'd

like to just go to Superstore and refill a medication, but

that's not even happening. So anyways, it's tough. It's a

tough road. I feel like sorrow is like a very heavy blanket,

and not in a good way. People have weighted blankets to help

them feel secure. Well, this is a cloak of of heaviness that

it's like a wet blanket. Sad. Sad that I have to take this

step because I didn't think I would have to do this step, but

I'm hoping that I will get a sympathetic ear and a listening

ear when I do talk to someone about the recent events.

Uh, just an update. I did get to talk to someone today that sort

of represented my case worker who gave me some guidance.

Truly, it is overwhelming to go through all of the hoops to try

and figure out how to get what you think you need. Anyways,

Monday is when a psych nurse is coming out to the house and

going to have a visit with both Don and I, so that's good.

Just had a really good meeting with the psych nurse. He brought

up some really good tips on what to do when Don starts escalating

and deflection and what to expect in the future, what part

of the brain is being affected when he makes decisions. All

kinds of things came up that I had the opportunity to talk to

him about. We also spoke about long term care and the

transition for movement into that, and how it best case

scenario, how to move forward as a family towards that new state.

Last night was a rough night. Don he started ruminating and

escalating in his behavior. Started with losing his wallet,

which I haven't seen for a long time. Anyways, he starts pulling

the house apart, and he was much better this morning. One of the

first things he said to me was, I'm so sorry I didn't get you

anything for my for your birthday. My birthday is in

August. And I said, Well, don't worry about it. You know, it's

not for another month and we'll go shopping. And then he said,

I'm so sorry I forgot our anniversary, which was in

September so and I reminded him of that. It's interesting how

his particular disease and part of the brain time is is so

confusing for him. He will stare at a clock and not understand

what time it is. So the numbers confuse him and the calendar

confuses him, dates, numbers on a piece of paper, just they

don't connect. They don't make a meaningful connection.

So that's interesting, and then I'm just reading this

interesting book on Carl Jung. And Carl Jung wrote and that

"how much more of this perspective asks us, namely, to

move from victimhood to participation in the meaning of

our journey and to recognize that in all events, even the

traumatic, there's an invitation to greater engagement with depth

and with mystery." So our subconscious is something that

we don't control. So I have been trying to make note of my

dreams, and one was very interesting with Don, where we

were somewhere in a very large city like Chicago, and it was on

a rooftop restaurant, and it was very, very windy, and things

were flying all over the place, and I remember them serving a

mushroom dish to us. And I took a scoop and put some on my

plate, and I I asked Don to lift his plate up so that I could put

a scoop on his and he couldn't make that connection on how to

lift up his plate. And since that dream, Don is making less

and less connections. Last night, I was helping him with a

shower and cutting his nails, and I and then I said, Okay,

could I please have your left hand? And well, let's do that.

And he started trying to give me his foot and take his sock off

and and it's sort of interesting how the dream of the wind and

inability for me to feed him and care for him because he was

unable to participate is sort of what is happening in real life,

and it is a mystery, and I am going to take this as an

invitation to greater engagement with my life in the depth of it

and the mystery of it. [Transition to Jeremy Dutcher

song]

[Singing] Take my hand and try to see, cross

rivers that you've feared. Stories you're afraid to hear,

can't keep our love away. I will always be there for you.

Stories definitely help us connect with others. That is

why we read novels and why we listen to documentaries and why

we connect to music, because we are all in a human web.

Everything is connected. And I believe the stories that we tell

are also someone else's story. And it might not be exactly the

same, but maybe it is, you just never know. So there are hard

times for everyone, you will have issues that other people

can share and relate to, and that's I think, what the stories

bring out in us, is a connectedness.

[singing] Take my hand and walk with me,

together you and I. Always remember sweetheart, I will

always be there for you. Weya heya, heya heyo.

Since her last recording, Gerri and Don are

still waiting for a care home space to open up. It may take up

to a year. In the meantime, she's spending as much respite

time as she can in magical, healing places like Tofino.

Family caregivers are the lifeblood of the healthcare

system for people with dementia. By 2030, it's expected the

number of people living with dementia in Canada will be close

to a million. This journey is different for everyone, whether

you're a caregiver or know someone living with dementia, we

hope this podcast series gives you a deeper understanding of

the family caregiving experience.

This series is part of a research project that explores

storytelling, different ways of listening and the power of being

heard. It's made possible by the University of Victoria, with

funding from the Social Sciences and Humanities Research Council

to see storyteller photos, access episode transcriptions

and learn more about our research project, go to our

website, at call to mindpodcast.com. And for

caregiver resources and to find local supports and services, go

to alzheimer.ca.

This podcast series was produced by Jenny Schine. Sound Design by

David Parfit. Executive Producer, Suzanne Ahearne. And

I'm Mariko Sakamoto, assistant professor of nursing and a

research affiliate with the Institute on Aging and Lifelong

Health at the University of Victoria.

Thanks to other members of our podcast team, including research

coordinator Paulina Santaella, and our research assistants Cole

Tamburri and Cynthia McDowell. Technical support, Bruce

Devereux and Mendel Skulski. The founder of the Call to Mind

podcast is Debra Sheets, professor emerita of nursing at

UVic. And of course, I want to thank all the research

participants who generously shared their time, stories and

experiences as part of this project.