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
Mariko Sakamoto:memory loss. I'm Mariko Sakamoto, assistant professor of
Mariko Sakamoto:nursing at the University of Victoria, and host of Call to
Mariko Sakamoto:Mind. This podcast series is a deep dive into the experiences
Mariko Sakamoto:of caregivers. It's about the importance of being heard and
Mariko Sakamoto:being listened to. Here we bring you intimate audio diaries
Mariko Sakamoto:recorded by caregivers of family members living with Alzheimer's
Mariko Sakamoto:and other forms of dementia.
Gerri:Our relationship has now come into a new phase of
Gerri:caregiving for me, where that is my main goal in life, is to look
Gerri:after Don and it's rare that he can complete a sentence. So, our
Gerri:communication is very troubled, yet we do stumble through it.
Gerri:So, our relationship has turned the tide of caregiving, and I'm
Gerri:very grateful...very, very grateful that we had the time
Gerri:together to form a bond beyond what we have now. I guess now
Gerri:it's just come to making sure that everything just stays the
Gerri:same, you know, like, I just don't want anything to get
Gerri:worse. Who knows what will happen in the future?
Mariko Sakamoto:Caregiving is hard, and journeying alongside a
Mariko Sakamoto:life partner with dementia is like watching your lover and
Mariko Sakamoto:your relationship slowly disappear in the rear view
Mariko Sakamoto:mirror. It's heartbreaking, and you just can't sugar coat it.
Mariko Sakamoto:Then there's all the practicalities and complexities
Mariko Sakamoto:of caregiving. It can be overwhelming. You can hear the
Mariko Sakamoto:fatigue in Gerri's voice. This is a story about the heavy,
Mariko Sakamoto:emotional work of caregiving. It's also about finding rest and
Mariko Sakamoto:renewal in nature, friends, art and music, with a little help
Mariko Sakamoto:from singer and composer Jeremy Dutcher,
Gerri:Don and I met in Edmonton, Alberta, many years
Gerri:ago. It was actually July the first 1971 and I remember that
Gerri:date because it was Canada Day, and at a park near my house,
Gerri:they had tons of music, and it was the 70s, and they had really
Gerri:good music and bands. And I was 14 turning 15, and Don was 17
Gerri:turning 18, so he was an older guy with long hair, and he loved
Gerri:music. And I was smitten, and he was smitten, and we did a dance
Gerri:for 10 years, I guess, until we finally got married and settled
Gerri:down.
Gerri:I have Don beside me. You want to say something, Don?
Don:Hello.
Gerri:How was your day?
Don:How was your day today?
Gerri:How was your day Don?
Don:Oh, not bad, played some cards and crib.
Gerri:And what are you gonna do now?
Don:Watch some hockey.
Gerri:So who do you want to win?
Don:Florida.
Gerri:You want Florida and I'm gonna go for New York Rangers.
Don:Okay.
Gerri:okay, how do you feel like everything's going? Okay?
Don:Yeah, not too bad.
Gerri:That's good.
Gerri:I'm feeling very overwhelmed with lots of stuff that's going
Gerri:on in my life, and it's very hard to be patient with Don, who
Gerri:really is somewhere around a five year old child at times.
Gerri:And a lot of my caregiving ability is to sort of be before
Gerri:Don, be with him and be after him. I have to, I have to really
Gerri:know what's going on before, during and after. And meals have
Gerri:to be early, so 7, 11, and 4, which means a lot of prep work
Gerri:and a lot of cleanup. And then there's all the things that are
Gerri:breaking that have to be maintained and feeling well
Gerri:enough physically to do it all, and I'm tired. A friend just
Gerri:texted me and said, Hey, I've got two tickets to the Rolling
Gerri:Stones in Seattle. Are you free? And I went, yes. No. Anyways,
Gerri:it's a roller coaster. Don has unfortunately become a very old
Gerri:man, physically where he shuffles, he stoops, he needs
Gerri:assistance with just about everything, and it's like
Gerri:getting to know someone all over again when their physical
Gerri:appearance changes, because that's not who they were for
Gerri:most of their life. Before Don was ill with Parkinson's, he was
Gerri:active outside with friends that he used to go golfing with. He
Gerri:did love growing tomatoes. That was his sort of forte was
Gerri:tomatoes. He walked fast with purpose, and now he walks slow
Gerri:with uncertainty. So there's definitely a shift. This new
Gerri:pattern that I am noticing, and I probably had this pattern for
Gerri:a while. It is a go-stop energy, where there are certain days
Gerri:where I'm chop, chop. Let's do it. Eight o'clock, nine o'clock,
Gerri:I'm good, and I go and I go and I go and I go, and all the
Gerri:things get done, and all the extra things get done or
Gerri:started. And then at the next day or two, I am just doing the
Gerri:bare essentials. So I found that was interesting, because I
Gerri:thought maybe there's something wrong with my health, but it's
Gerri:quite common for people to have that pattern, so I feel good
Gerri:about that. I'm just going to embrace it and I'm going to just
Gerri:go with the flow, notice it and be a witness to it.
Gerri:I did a personality test when I was a nurse at during my career
Gerri:and I'm an accommodator. That's what I am, and I think most
Gerri:nurses probably are. They try and make everybody happy, and
Gerri:sometimes there's a cost to that. I am feeling guilty, and
Gerri:the reason I'm feeling guilty is because I'm having it's a
Gerri:struggle to be with Don when he is so unhappy and so confused.
Gerri:That's one thing I'm dealing with, is trying to be nicer to
Gerri:Don because I'm just not very nice at times. And he's not very
Gerri:happy. He's never really been happy. He's always been the
Gerri:glass is empty, half empty, and anyways...had a fairly rough
Gerri:weekend, and it just really made me feel like I am so freaking
Gerri:done with this. I am tired of being a caregiver and not having
Gerri:a loving partner. I'm not very loving to him. And I am more of
Gerri:a mother than a wife. There's just really no solution.
Gerri:My heart is so full of love right now. How can one be sad
Gerri:and happy in such a short time? I lost two of my very deep,
Gerri:influential friends lately, and I was very sad. You know, life
Gerri:carried on, but while you're doing dishes or vacuuming or
Gerri:looking after things, you're still holding that sadness. And
Gerri:it is just such a stunning, beautiful day. Starting to see
Gerri:the fruits of summer blossom and life everywhere is just a joyous
Gerri:thing, and it is slowly turning the gage of sadness into joy,
Gerri:somehow. It's a miracle, really, how that happens. And obviously
Gerri:when I'm doing better, Don is doing better. So it's a
Gerri:beautiful morning. Beautiful. Stunning. I would like to share
Gerri:a song. Actually, it's lyrics to a song, that really express how
Gerri:a lot of my feelings beneath the surface. And it's called Take my
Gerri:Hand. And it's an amazing song. The lyrics go like this: Take
Gerri:my hand and walk with me. Together, you and I. [music
Gerri:playing and Jeremy Dutcher singing in sync with Gerri
Gerri:speaking the lyrics]
Gerri:Always remember sweetheart, I will always be there for you.
Jeremy Dutcher:[singing] Weya heya, heya heyo. I would walk
Jeremy Dutcher:through the night, Across the land to sea, And see you
Jeremy Dutcher:standing there In new light, Take my hand, walk with me.
Jeremy Dutcher:[Jeremy Dutcher's singing fades out]
Gerri:And that sort of sums it up for me, because today, Don
Gerri:needed a lot of walking help. Then I heard this song and was
Gerri:reminded how it touched my soul. Jeremy is an amazing artist. His
Gerri:lyrics of the song just sort of held me and also freed me in a
Gerri:way, if that makes sense. Being a caregiver can be very
Gerri:solitary, but the songs of the lyrics, really, they just
Gerri:touched my spirit. Because we are all connected, and I know
Gerri:I've said this before, we're all connected, and we all need to be
Gerri:held in a certain way, whether that's by nature or by novels or
Gerri:by music or by poetry or by reflection, words. And I just
Gerri:find it's, it's very, very necessary to find that somehow.
Gerri:And if you do find that, hold on to it just for a few seconds so
Gerri:you can find relief and some peace.
Gerri:I had someone come in and create a really beautiful forest place
Gerri:that I Don and I could sit and just be right in the middle of
Gerri:the trees on our property. And its level, so Don won't trip and
Gerri:fall, hopefully. It is a beautiful space. And nature is
Gerri:very restorative for me. And if he wants to nod off, great
Gerri:you're right in the middle of the forest to nod off. What a
Gerri:great place to have a rest. Two of my friends have passed away,
Gerri:which is very saddening to me. Makes me feel a little bit lost,
Gerri:and I'm sure that I will come to peace with it. There was a
Gerri:beautiful butterfly that accompanied me while I was
Gerri:resting in our forest, and I thought that was her spirit that
Gerri:was coming to say all is well.
Gerri:New challenges are that Don is very upset about the respite
Gerri:coming up. This has been in the works for months now, and
Gerri:probably the last two weeks or so, he's been packing and
Gerri:unpacking, and last night, he said someone came into the house
Gerri:and stole his wallet and sold his ID and stole his money. He's
Gerri:very upset and angry. He doesn't want... he's like shutting down.
Gerri:It's difficult to live with someone who is so confused and
Gerri:upset. It's difficult enough when they are confused and
Gerri:compliant, or they take your word as the honest truth, but
Gerri:now he seems to not trust me and doesn't think that he's coming
Gerri:home again after a week. What I am noticing is that I am very
Gerri:tired and not sleeping great, but functioning well, if that
Gerri:makes sense, I feel like the disease is taking from me, and I
Gerri:have to still, you know, carry on. Things just have to be done.
Gerri:So we'll see. I've got to get some good coping skills to get
Gerri:me through the next week and get some sleep. That would be
Gerri:paramount. And we'll see what tomorrow brings.
Gerri:Evening of Monday night, eve before I go on my little hiatus,
Gerri:only for four nights, but so much is going through my head
Gerri:about, will everything be okay without me? I feel so sad
Gerri:because Don just can't follow threads. But he is being a
Gerri:trooper. He knows that it's going to be a couple of nights
Gerri:away from me and home and his dog, and he hasn't been too
Gerri:confused, just minor confused. So we'll see what happens
Gerri:tomorrow. Sometimes I just want to stay home, bury my head in
Gerri:the sand, but that's not life, and I know that I need to
Gerri:nurture my relationship with my friends, and it's only four
Gerri:nights, so we'll see what happens.
Gerri:Good morning, we are now in Royston, so this is day one of
Gerri:my respite day, and I'm in a car with my friend Deborah, who's
Gerri:driving. Say hi, Deborah.
Deborah:Hi!
Gerri:And my other very good friend, Trish. Wanna say hi?
Trish:Good morning!
Gerri:... and they're looking after me. I phoned Don this
Gerri:morning, and he was very sad because he didn't quite
Gerri:understand what was happening, and he wanted to know when I was
Gerri:coming to pick him up, and I wondered if it was a mistake to
Gerri:phone. Anyways, it is a gorgeous day today, and I feel very
Gerri:supported with my friends. We've shared many teary moments, and
Gerri:I've received many beautiful hugs.
Gerri:Don is back, and he is so confused. It's unbelievable.
Gerri:Four nights away really put him into a tailspin. He keeps asking
Gerri:me what the plan is and if I'm going to dump him somewhere
Gerri:else. And so I don't know I have to be patient and I have to be
Gerri:kind and compassionate, because I know that he is slipping, and
Gerri:I think, honestly, he is so much better with a routine and at
Gerri:home. So I'm not sure if I will do any more respite at this
Gerri:point. It was beautiful. It was wonderful. It was surreal. It
Gerri:was almost otherworldly-like because there was no stress,
Gerri:which was very different for me. I noticed that I ate so much
Gerri:slower, and I noticed the foods that I love to eat like peanut
Gerri:butter. You just can't eat peanut butter fast, right? And
Gerri:just really slowing down to a minute cellular level where I
Gerri:loved taking walks by myself through the garden and just
Gerri:observed certain things. It was just so wonderful. But now I'm
Gerri:back to reality, which is a good reality, but it's just a busy
Gerri:reality.
Gerri:Had an interesting thing happen this morning. Don got up and
Gerri:asked me if I was intentionally making him miserable. So that
Gerri:sort of opened up conversation as to why he thought that, what
Gerri:things I said that might have triggered those feelings, and he
Gerri:couldn't put into words why he thought that. And then I asked
Gerri:him what he thought I was going through, hoping to start a
Gerri:discussion the other side of the coin. And then I tried to
Gerri:explain to him that why I think he's feeling that way is because
Gerri:of the lack of the dopamine. And dopamine is such a strong
Gerri:neurotransmitter in the brain for motivation and happiness and
Gerri:joy and energy, and with his disease process, there's so
Gerri:little of the dopamine left in his brain, and there's no
Gerri:production being made. And I don't know if any, if he
Gerri:understood any of what I was saying, but to me, it made
Gerri:sense, and I've been trying to understand it more myself, so
Gerri:that I don't take things personally, either from Don or
Gerri:from myself. When I try to beat myself up, I beat myself up a
Gerri:lot as far as why I'm not doing things, physical things when I
Gerri:should be. Anyway, so just exploring what the physiological
Gerri:reasons might be helps me understand it and depersonalize
Gerri:it.
Gerri:There seems to be a little bit of a change in Don,
Gerri:unfortunately, and I think this is just the natural progression
Gerri:of the disease of dementia, where he is getting more
Gerri:paranoid. And unfortunately, a couple days ago was the first
Gerri:time, at three o'clock in the morning, he threatened me with
Gerri:death. So that's not good. He said he was going to, I think,
Gerri:shoot me, which is ridiculous, because he doesn't have a gun
Gerri:and has never had a gun, and doesn't know how to shoot a gun,
Gerri:but something triggered his brain. And then there's
Gerri:definitely a change in our relationship now it's like for
Gerri:the first time, I seriously thought it would be so nice not
Gerri:to have him around. You know, as far as the freedom I would have
Gerri:and, you know, I wouldn't have to have things so scheduled, and
Gerri:I could have freedom for the first time in my life, since
Gerri:whatever you know, 40 something years. So I don't know what that
Gerri:means, either if that's normal or not. Anyways, I'm just tired.
Gerri:Just tired of it all.
Gerri:A very, very quiet day today. Don was really hungover from
Gerri:when he had his delusional episode. When was that? That was
Gerri:yesterday, I guess, um, so unfortunately, it was not a good
Gerri:day yesterday. He was very delusional. And I do have a
Gerri:phone call out for my case manager. I have been waiting for
Gerri:two days for her to get back to me, so I need to talk to someone
Gerri:about getting him into placement. It's just not working
Gerri:any longer, and it's a really hard call, and I don't even know
Gerri:what that looks like, as far as you know, assessments, and I
Gerri:don't know it's a whole new ball game, but it's time. I can't
Gerri:watch him, 24/7, any longer. It's just not fair to him or I,
Gerri:you know. People want me to do things with them, and I can't.
Gerri:I've turned down half a dozen things with family members just
Gerri:because he's too unpredictable. He gets very agitated at times.
Gerri:He's delusional. So it's not fair for either one of us to
Gerri:have a life like this, and I did mention it to him, and he did
Gerri:agree that he would go to care. So that may change for sure. And
Gerri:also he asked when I was going to Spain, and I said, Well, I'd
Gerri:like to just go to Superstore and refill a medication, but
Gerri:that's not even happening. So anyways, it's tough. It's a
Gerri:tough road. I feel like sorrow is like a very heavy blanket,
Gerri:and not in a good way. People have weighted blankets to help
Gerri:them feel secure. Well, this is a cloak of of heaviness that
Gerri:it's like a wet blanket. Sad. Sad that I have to take this
Gerri:step because I didn't think I would have to do this step, but
Gerri:I'm hoping that I will get a sympathetic ear and a listening
Gerri:ear when I do talk to someone about the recent events.
Gerri:Uh, just an update. I did get to talk to someone today that sort
Gerri:of represented my case worker who gave me some guidance.
Gerri:Truly, it is overwhelming to go through all of the hoops to try
Gerri:and figure out how to get what you think you need. Anyways,
Gerri:Monday is when a psych nurse is coming out to the house and
Gerri:going to have a visit with both Don and I, so that's good.
Gerri:Just had a really good meeting with the psych nurse. He brought
Gerri:up some really good tips on what to do when Don starts escalating
Gerri:and deflection and what to expect in the future, what part
Gerri:of the brain is being affected when he makes decisions. All
Gerri:kinds of things came up that I had the opportunity to talk to
Gerri:him about. We also spoke about long term care and the
Gerri:transition for movement into that, and how it best case
Gerri:scenario, how to move forward as a family towards that new state.
Gerri:Last night was a rough night. Don he started ruminating and
Gerri:escalating in his behavior. Started with losing his wallet,
Gerri:which I haven't seen for a long time. Anyways, he starts pulling
Gerri:the house apart, and he was much better this morning. One of the
Gerri:first things he said to me was, I'm so sorry I didn't get you
Gerri:anything for my for your birthday. My birthday is in
Gerri:August. And I said, Well, don't worry about it. You know, it's
Gerri:not for another month and we'll go shopping. And then he said,
Gerri:I'm so sorry I forgot our anniversary, which was in
Gerri:September so and I reminded him of that. It's interesting how
Gerri:his particular disease and part of the brain time is is so
Gerri:confusing for him. He will stare at a clock and not understand
Gerri:what time it is. So the numbers confuse him and the calendar
Gerri:confuses him, dates, numbers on a piece of paper, just they
Gerri:don't connect. They don't make a meaningful connection.
Gerri:So that's interesting, and then I'm just reading this
Gerri:interesting book on Carl Jung. And Carl Jung wrote and that
Gerri:"how much more of this perspective asks us, namely, to
Gerri:move from victimhood to participation in the meaning of
Gerri:our journey and to recognize that in all events, even the
Gerri:traumatic, there's an invitation to greater engagement with depth
Gerri:and with mystery." So our subconscious is something that
Gerri:we don't control. So I have been trying to make note of my
Gerri:dreams, and one was very interesting with Don, where we
Gerri:were somewhere in a very large city like Chicago, and it was on
Gerri:a rooftop restaurant, and it was very, very windy, and things
Gerri:were flying all over the place, and I remember them serving a
Gerri:mushroom dish to us. And I took a scoop and put some on my
Gerri:plate, and I I asked Don to lift his plate up so that I could put
Gerri:a scoop on his and he couldn't make that connection on how to
Gerri:lift up his plate. And since that dream, Don is making less
Gerri:and less connections. Last night, I was helping him with a
Gerri:shower and cutting his nails, and I and then I said, Okay,
Gerri:could I please have your left hand? And well, let's do that.
Gerri:And he started trying to give me his foot and take his sock off
Gerri:and and it's sort of interesting how the dream of the wind and
Gerri:inability for me to feed him and care for him because he was
Gerri:unable to participate is sort of what is happening in real life,
Gerri:and it is a mystery, and I am going to take this as an
Gerri:invitation to greater engagement with my life in the depth of it
Gerri:and the mystery of it. [Transition to Jeremy Dutcher
Gerri:song]
Jeremy Dutcher:[Singing] Take my hand and try to see, cross
Jeremy Dutcher:rivers that you've feared. Stories you're afraid to hear,
Jeremy Dutcher:can't keep our love away. I will always be there for you.
Gerri:Stories definitely help us connect with others. That is
Gerri:why we read novels and why we listen to documentaries and why
Gerri:we connect to music, because we are all in a human web.
Gerri:Everything is connected. And I believe the stories that we tell
Gerri:are also someone else's story. And it might not be exactly the
Gerri:same, but maybe it is, you just never know. So there are hard
Gerri:times for everyone, you will have issues that other people
Gerri:can share and relate to, and that's I think, what the stories
Gerri:bring out in us, is a connectedness.
Jeremy Dutcher:[singing] Take my hand and walk with me,
Jeremy Dutcher:together you and I. Always remember sweetheart, I will
Jeremy Dutcher:always be there for you. Weya heya, heya heyo.
Mariko Sakamoto:Since her last recording, Gerri and Don are
Mariko Sakamoto:still waiting for a care home space to open up. It may take up
Mariko Sakamoto:to a year. In the meantime, she's spending as much respite
Mariko Sakamoto:time as she can in magical, healing places like Tofino.
Mariko Sakamoto:Family caregivers are the lifeblood of the healthcare
Mariko Sakamoto:system for people with dementia. By 2030, it's expected the
Mariko Sakamoto:number of people living with dementia in Canada will be close
Mariko Sakamoto:to a million. This journey is different for everyone, whether
Mariko Sakamoto:you're a caregiver or know someone living with dementia, we
Mariko Sakamoto:hope this podcast series gives you a deeper understanding of
Mariko Sakamoto:the family caregiving experience.
Mariko Sakamoto:This series is part of a research project that explores
Mariko Sakamoto:storytelling, different ways of listening and the power of being
Mariko Sakamoto:heard. It's made possible by the University of Victoria, with
Mariko Sakamoto:funding from the Social Sciences and Humanities Research Council
Mariko Sakamoto:to see storyteller photos, access episode transcriptions
Mariko Sakamoto:and learn more about our research project, go to our
Mariko Sakamoto:website, at call to mindpodcast.com. And for
Mariko Sakamoto:caregiver resources and to find local supports and services, go
Mariko Sakamoto:to alzheimer.ca.
Mariko Sakamoto:This podcast series was produced by Jenny Schine. Sound Design by
Mariko Sakamoto:David Parfit. Executive Producer, Suzanne Ahearne. And
Mariko Sakamoto:I'm Mariko Sakamoto, assistant professor of nursing and a
Mariko Sakamoto:research affiliate with the Institute on Aging and Lifelong
Mariko Sakamoto:Health at the University of Victoria.
Mariko Sakamoto:Thanks to other members of our podcast team, including research
Mariko Sakamoto:coordinator Paulina Santaella, and our research assistants Cole
Mariko Sakamoto:Tamburri and Cynthia McDowell. Technical support, Bruce
Mariko Sakamoto:Devereux and Mendel Skulski. The founder of the Call to Mind
Mariko Sakamoto:podcast is Debra Sheets, professor emerita of nursing at
Mariko Sakamoto:UVic. And of course, I want to thank all the research
Mariko Sakamoto:participants who generously shared their time, stories and
Mariko Sakamoto:experiences as part of this project.