Season Two: Episode Two

Transcript

Mariko Sakamoto 0:04

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.

Gerri 0:35

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?

Mariko Sakamoto 1:38

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,

Gerri 2:18

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.

Gerri 3:17

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

Don 3:20

Hello.

Gerri 3:22

How was your day?

Don 3:23

How was your day today?

Gerri 3:25

How was your day Don?

Don 3:27

Oh, not bad, played some cards and crib.

Gerri 3:32

And what are you gonna do now?

Don 3:34

Watch some hockey.

Gerri 3:36

So who do you want to win?

Don 3:38

Florida.

Gerri 3:39

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

Don 3:43

Okay.

Gerri 3:44

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

Don 3:49

Yeah, not too bad.

Gerri 3:51

That's good.

Gerri 3:54

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.

Gerri 7:44

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.

Gerri 9:21

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]

Gerri 11:03

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

Jeremy Dutcher 11:22

[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]

Gerri 12:03

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.

Gerri 13:29

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.

Gerri 14:35

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.

Gerri 16:19

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.

Gerri 17:37

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.

Deborah 17:48

Hi!

Gerri 17:50

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

Trish 17:55

Good morning!

Gerri 17:56

... 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.

Gerri 18:30

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.

Gerri 20:13

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.

Gerri 22:25

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.

Gerri 23:44

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.

Gerri 26:36

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.

Gerri 27:28

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.

Gerri 28:28

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.

Gerri 29:47

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]

Jeremy Dutcher 32:18

[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.

Gerri 32:56

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.

Jeremy Dutcher 33:54

[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.

Mariko Sakamoto 34:45

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.

Mariko Sakamoto 35:03

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.

Mariko Sakamoto 35:26

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.

Mariko Sakamoto 35:59

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.

Mariko Sakamoto 36:16

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.