Season Two: Episode One

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 diariesrecorded by caregivers of family members living with Alzheimer's and other forms of dementia.

Ashley and Devki 0:35

[Speaking together in Punjabi]

Ashley 0:45

I'm Ashley. I am my nani's granddaughter. My nani is Devki and she is 73 years old and lives with dementia.

Ashley and Devki 0:59

[Speaking in Punjabi]

Mariko Sakamoto 1:14

When you think about family caregivers, you likely imagine a spouse or a son or daughter. But there are also young people out there who are doing the lion's share of care for a grandparent with dementia. Ashley was a full time student with two part-time jobs when she became one of her grandmother's primary caregivers in their multi generational home in Abbotsford. This is a story about racism and gaps in the healthcare system, and the need for human centered and culturally sensitive supports. It's also a story about how a young woman finds her way back to being a loving granddaughter again when she becomes lost in the role of caregiver.

Ashley 1:54

What is it like to be a 24-year-old caregiver? I am the only person that I know of in my age range that is a caregiver with someone with dementia. It has been a journey from 20 to 24 years old as a live,in, non-paid caregiver. My definition of a caregiver over time has changed and evolved. When I first started caregiving, it wasn't a choice. I was simply helping out here and there. Honestly, it was annoying at first. I had worked so hard in my final years of high school and during my university certificate. Wasn't this my time to go out into the world and live as a 20 year old? nani and I would often argue then about everything under the sun, which is something we've never done before. I would get frustrated when she didn't take her medications. I would break down and sob uncontrollably on the floor when my nani was sundowning and would not go to sleep until 1am I wanted her to be admitted into a residential facility. It's not in our culture to leave our elderly in the care of others. It is our responsibility as their kin to assure their well being, as they did for us throughout their lives. Everything was a battle. My nani was not happy. I wasn't happy. Nobody in the household was happy, and we did not know where to start to fix it. I couldn't turn to a friend in a similar situation to discuss what worked for them before it really felt like it was just happening to me,

Ashley 3:42

Since I was a child, I've been incredibly fascinated with time and memory. How much time do we have? How much can I remember throughout my short 24 years on this earth, I believe that one of my most formative times is a life that I've spent with my nani, Devki. nani is the Punjabi word for maternal grandmother. Typically, grandchildren would call their maternal grandmothers "nani ji" out of respect, but nani has always just wanted to be called "nani." I come from a large family with Indian roots. Specifically, we come from a village in Punjab called Moga.

Ashley 4:25

I've been there twice with my nani, and she was our navigator, translator and protector during her month long visits. nani, however, started her journey on May 10, 1945 in Lahore, Pakistan, where she was born. India was still under British rule for 200 years at the time, my nani came from a Hindu family as Pakistan declared themselves as a nation. My nani family decided it would be best for them to immigrate back to Indian borders, a displacement that affected 10s of millions of people in the region. Reasons my nana, my maternal grandfather, and nani husband for 60 or so years, has told me a long-winded story of how my nani and her family walked seven days and seven nights across the desert to find shelter in India. I wish I could have gotten her side of the story, before she slowly and seemingly all at once, started to slip away.

Ashley 5:30

I started living with my nani and my nana in 2007 the day my dad died. I didn't really know my nani and nana very well, but I knew they loved me and I was safe with them. As my mom grappled with her new reality without her husband, my nani picked up all the pieces left behind, mainly caring for myself and my siblings, dropping us off to school, picking us up from daycare, assuring my hair wasn't in a mess and neatly braided, comforting us in our grief for that I am ever grateful.

Ashley 6:14

Okay, so this is Ashley, and right now I am checking nani blood sugar. nani has type-two diabetes, and has had it since I was alive. So typically, we check it three times a day, most of the time. She knows exactly what I'm doing when I'm checking her blood sugar. When I started living with her when I was seven years old, I started checking her blood sugar. Then too, it's always been a fun bonding thing for us, even though it's just making sure she is well within her levels. [speaks in Punjabi]

Ashley 6:53

Okay, so I'm just prepping everything, making sure I have the strips, making sure her needle is changed and clean. You're supposed to use a new needle. I think every time, or at least every, every day, we change the needle so she doesn't get any infections.

Ashley 7:12

Yeah? [laughs and speaks in Punjabi]

Ashley 7:18

In my culture, we don't talk about our sorrows openly with our family. It is a spiritual matter that you'll have to take up to God. If you want coddling or answers, you won't get them on Earth. I never heard my nani complain once in her lifetime. She, out of many people I know, had the best possible reasons to throw in the towel, cry, complain or feel heard. I often worry that in her lifetime before dementia, that she felt as if she was never heard. With her aphasia, I don't even have the chance to truly hear her now, not that she would have shared with me to begin with, I think the first time my family knew that there was something going on with my nani was when she became very secretive or very emotional.

Ashley 8:12

Typically, she was upright, quiet, did her duty as a grandmother, mother, sister and wife, and that was it. Having my nani withdraw made us worry a little bit. We didn't chalk it up too much. Her family was going through growing pains seven years ago anyways. So maybe that was it. My mom and my aunt, who I call Masi, would sometimes ask her what was going on. She'd push them away and say that they wouldn't understand what was happening with her. I wish I held her so much closer then she would then forget where she was going when she was driving. I remember overhearing a conversation with my mom, and must see where nani had called my mom and told her that she was lost on her way to her spiritual study center, I could hear the concern in their conversation. My nani driving became from being lost to driving into medians on the wrong side of the road, even getting lost going home, my nana decided it would be best to take her keys. It was so confusing for my nani, although it was so clear to us that she couldn't drive anymore. Then I felt it dementia. Could that be it? It is that the future for my nani?

Ashley 9:42

As immigrants to Canada and their experiences with racism in the medical field, there was no way my nani would have gone to the doctor to tell them what was happening to her. So why didn't we say anything? I think speaking it would make it true and our. Dreams with my nani would crumble before us.

Ashley 10:05

My nani is a fierce woman where there is a will, there is a way, she wanted out of the house, no worries, no car, just fine. She'd only walk to my masi's home, which is only a 25 minute walk from our home. Although strange to us, at least she was walking on the sidewalk and being safe. Then she'd go missing. I remember calling the police for the first time to help us find her. It was a huge argument in the family whether we should or not. I called anyways because I needed my nani home, and nobody would stop me from finding her. I cried so much on the phone with the police. I felt neglectful, I felt judged. I felt like I was responsible for her being lost, even though the responder on the line was very nice, the dispatcher told me to go to an address. I didn't ask why or where it was. My sister drove us, as I was too in shambles to drive, I thought maybe this was it. She got hit by a car. She's gone. That's why they aren't telling me anything.

Ashley 11:13

We arrived at a residence where a police officer was and my nani was drinking tea with a stranger outside of their garage. I ran out and held her. We didn't know who these people were, but they saw my nani wandering, and they felt like she was lost. They brought her back to their residence and let the police know. I was so thankful. I was so ashamed. My nani looked happy, though she couldn't figure out why I was so upset. We put child locks on our doors. My nani was so angry with us. I was too. We essentially trapped her at home. But what else could we do? This kept her safe. She couldn't leave and become lost anymore. It was probably humiliating for her, but she couldn't vocalize how this process made her feel. She had no say, no understanding, no will to tell us what to do. We had family, but we had no idea what to do, and we argued over what to do while my nani continued to change.

Ashley 12:28

My nani is about, like, I say like five' six". So she's like, average height. She's very thin right now, but she has beautiful, dark golden skin, almost. She has a lot of wrinkles, but they, I always find that they show her a wisdom more than they show her age. She had veneers, but they had fallen out earlier in her stages of dementia. And so she has like, almost like half a smile, but it's always like, really pretty, because she's always brightly smiling. She likes to wear vests and long T shirts and very comfortable pants. She always has a toque on or a hat, and although she doesn't wear it anymore, I always envision this on her, because this is like her like, look was she'd always have a gold nose ring on and gold hoop earrings on.

Ashley 13:22

Oh, how would I describe myself? Short, I'm five foot on the dot I like to say I bring six foot to energy in my five foot body. [laughs] [Punjabi music transition]

Ashley 13:49

In 2020 It was when our lives exploded. My nani was getting worse, repeating the same phrases, missing her diabetic medication, running around the house confused. Her diabetes became uncontrolled, and one day she was hospitalized. I remember us calling the ambulance because she kept telling us, I can't feel my left arm. We thought she was having a stroke. The ambulance came and whisked her off to the hospital. I cried so much on the couch. The last time someone I loved was whisked off in an ambulance so abruptly, was when my dad died. Was this the end for my nani too? That trip to the hospital was a blessing in disguise. It was where the doctors did the test that showed my nani, our fierce leader, was diagnosed with frontal temporal lobe dementia, with aphasia. It was a sigh of relief, but also a new heavy weight was given to our family. We are different now my nani is different.

Ashley 14:56

[Ashley and Devki speak in Punjabi] I have the strip in, and I've prepped the needle, and she's given me her hand because she knows what's going on, okay, and so I'm just about to give her a poke. Sometimes it hurts a little bit. [Devki speaks in Punjabi and Ashley laughs] She likes her sweets and she gets into things sometimes, but she's been really good about it lately, huh? Okay.

Ashley 15:31

So, my nani has dementia. Now, what eventually everyone started to shift into a new role that they played in the family. I found the process as complicated as ever. I was no longer my nani's granddaughter. I was a caretaker. Not only was I a caretaker, I was 21, a full time student, and had two part-time jobs every single minute of every single day, it was like I was running. I consider myself a marathon runner when it comes to challenging life's problems. I have experience. I've been doing hard work for a long time. Nothing was compared to taking care of someone with dementia.

Ashley 16:20

We brought in nurses. At first. They were part of a pharmacy program, and it was around $5,000 a year. The nurse's roles were to check my nani's vitals, check her sugar levels, give her insulin and give her medication. When my nani's symptoms started to progress and she became more and more aggressive, especially when it came to medications. I did not feel confident in the nurses to treat my nani with compassion and dignity. The nurses were kind for the most part. Some simply did their job and left. Each day, the nurses were there for about 10 minutes and not a second longer. Their job was to take care of my grandma, but mostly just to assure her physical medical attention was met, not her emotiona.

Ashley 17:13

I did not know who I was to my nani anymore, and it scared me to think that she didn't recognize who I was to her either. There became this odd distance between myself and my nani that we could not figure out, and I could tell that she was so tired trying to explain herself to me, I knew I couldn't keep living life that way, and reluctantly, I put myself back into therapy. It was when I deconstructed my thoughts with someone outside of my family home, where I was able to understand how I could not hide behind the role of caregiver to mask the emotions of the granddaughter inside waiting for her nani to just say her name again.

Ashley 18:03

I felt like I had to do everything all at once, and I had this like notion that, okay, well, I'm a social worker, and I have so much education and knowledge of how to help people. How can't I help my family? I felt like such a failure as a granddaughter, as a niece, as a social worker, and then when I realized I'm not a superhero, as much as my brain may like to think, I cannot do it all, and it's unhealthy for me to try, and I feel like caregivers are really put into that role to fit in so many types of relationships and maintain those relationships and that they have to be the person to do so because they're in that caregiving role, they feel that pressure. It's like, okay, in order to control my life as a caregiver, I have to control all other aspects of my life. Otherwise they'll just fall apart. And that's just a notion that we have in our brains when we're on, go, go, go, right? We do not have time to stop and think someone else can take care of this. I'm allowed to have a break.

Ashley 19:05

I remember when I really had my breakdown, like on the floor, just crying, knowing that I couldn't do it all for nani. And that's when I was like, I just want to be a granddaughter. And like, I don't know what happened in my head, but I have these like, little moments where it's like, Well, why not? Why not just be a granddaughter? Why not act like a granddaughter to your grandmother instead of a caregiver? And I'm like, okay, well, yes, I'll try it out. I just pretended that my grandmother was just fine, and my grandmother was like, sitting on the couch, and I sat on the couch with her, and I just put on, like an old TV show that I used to watch as a kid. I was like, nani, can you make me noodles? And she's like, Yeah, I can make you noodles. And she doesn't know how to make noodles. And she forgot two seconds later, but she went towards the kitchen to make noodles and so, but it felt so natural. And I'm like, Why do why don't I just treat her like a grandmother, because that's exactly who she is. To me, I can do caregiving absolutely that can be part of my role, but my primary role will always be a granddaughter, and that's where my love is, and that's where my love lies from my grandma.

Ashley 20:17

When dementia robs us of our loved ones abilities, we have to remind ourselves that they are just as frustrated as us. I also had to come to terms that this is life now, and the only way my nani and I were going to have our relationship back was to accept our new reality with no expectations, although I wished I had learned this sooner rather than later. Now I get to cherish every day with her, and I'm slowly learning to take steps back when I'm hiding in the caretaker role and let myself feel like a granddaughter again. [Punjabi music transition]

Ashley 21:10

I hate asking for help. I have always visioned myself as the helper in all aspects and to be helped felt alien to me. I looked up dementia support in BC and found the Alzheimer's Society of British Columbia. I decided to give them a call as my last shot before I gave up and completely folded-in on myself. I let them know my situation when I was looking for and at the time, it was just culturally sensitive resources that I wanted. My nana tells me that in India, at least when he was living there, no one ever talked about dementia. People would walk around in the villages and be in disarray, and others would just say they're old and crazy. What can we do about them? I got to talk to this amazing woman from the Alzheimer Society of British Columbia. It was almost a surreal moment, because it was the first time I actually felt seen. Because she was near my age, she was quite young, and she was also Indian. And I'd come from an Indian household, so when I was crying on the phone and telling her, I don't want to put my grandma in a home, but I can't take it anymore. She knew exactly what I meant, and she knew almost exactly what I was looking, for groups like this.

Ashley 22:29

And I come to tears thinking about it, because it wasn't until I connected and decided to accept help, and that's where my life changed, with my nani, and I was able to become her granddaughter again, because I said yes to help. And it wasn't invasive help what I was looking for. A lot of the time, people assume that caregivers need someone in there to step in and so they can go take a vacation. But I'm not that kind of person. I can't take a vacation. I don't want a vacation because I don't want to be away from my grandmother. I just want the relationship as it was before. And because of groups and societies like this, I am able to have that relationship while still being able to be a caregiver.

Ashley 23:20

I mourn the relationship I had with my grandma before dementia. I mourn being a kid with her. Like before dementia, my grandma would have gone to shopping with me and would have done all the deals and the hagels and gotten me the best suit ever. I have to do that now, and so I'm like, Oh God, this is so uncomfortable. But if I get my suit, even though my grandma can't pick it out with me, I can bring it back home and put it on for her and show it for her. And she can tell me how she likes it. And she's still very honest in her dementia, even more, like brutally so now. [laughs] So some of them, she's quite like, ruthless, like she won't even look at me. And so that's how I know she doesn't like it. And I'm like, Do you like it? Do you want to touch it? And like, for her, it's like texture, so if she likes it, she'll like, touch it a little bit, or tug on it. Or if she doesn't like it, she'll like, do this with her hand, like, go away.

Ashley 24:18

My nani has aphasia, so she can't understand the words I say to her, and when she tries to project out any like sort of language, it's not coherent, and it has to do something about the brain and dementia. But right now, we're on the couch just hanging out. [Ashley and Devki chat in Punjabi] And so she's she's giving me pats on my back, and she's trying to tell me, Oh, come on, let's go. Let's go. So whenever she says ajoji, or aja, it's like, Okay, let's go. So it usually means like she wants to take a walk or do something. [Ashley and Devki speak in Punjabi] Okay, I think she is done with our conversation. I think she's just trying to walk away. [Punjabi music transition]

Ashley 25:44

Dementia in the healthcare system? Is it even there, is my big question. My family's experience with the healthcare system, while my grandma has had dementia, has been sour, to say the least. For me, I'm in a very interesting position, because I am not my grandmother's power of attorney. I am simply her live-in caregiver. But that doesn't mean a lot to our health care system right now, most of the advice that I get from practitioners is: make sure you are doing self care, take breaks, or do yoga or something like that. But that's not the advice or answers that I'm looking for. I am looking for, how are you going to ensure my grandmother's quality of life while she lives with dementia? You have no cure to present to me, and that's just fine. I hope we get there someday, and we are working towards it. But from now until then, how are you going to assure my grandmother's quality of life, and how are you going to ensure that her caregivers are able to maintain that while maintaining themselves?

Ashley 26:59

It's been a very frustrating journey to navigate that health care system with my grandmother. We talk a lot about how health care is free, but you might die waiting for it with the amount of wait lists. One of my biggest hurts and hurdles in the health care system and dementia is the way that my grandmother is treated. I understand that she doesn't quite understand what you're saying at all, and she cannot voice how she is feeling. But that doesn't mean you treat her like she's a fly on the wall. My nani understands tone of voice, and she understands when people are stressed or there's something serious going on. Or if it's something about herself, she understands that. I know she understands that because of her body language, her tone of voice, and how she reacts to it physically. You know, we have a lot more language and conversation other than just our vocal language, and I feel like practitioners easily forget that.

Ashley 28:04

Needless to say, it has been hell navigating the healthcare system while my grandma's had dementia. I'm at a loss of what to do and what to say, and so I just kind of truck along and hope I get the best medication. I do my own research and like holistic healing, wise and understanding what we can do at home to make my grandmother's life better. But it is such a burden on me to do everything. I just want the health care system to hold our hand through this, rather than run away from us just because there is a caregiver there. Good enough. It's not good enough. It really isn't, and that needs to be said. It is unacceptable that we are leaving our loved ones and our seniors behind as they have created such a foundation for us to live on.

Ashley 28:55

I don't think it'll be in Devki's lifetime where we'd be able to get the culturally competent care that I envision like for us. We do it as a family. We are very much intertwined with each other, right? It'd be nice to have like other individuals explain to things in my grandma in Punjabi, sometimes you can get a translator, sometimes you can't, or even just having it for my grandpa, like he can speak English, but he's more comfortable in Punjabi, right? Ask people what they're comfortable with, you know, and ask them what they want. I don't think we've ever been asked like, hey, what do you want? Or, how can we make you comfortable? You'd hope people would just ask. [laughs] I mean, it's a simple question, what would you like? Oh, thank you. Someone asked! [Punjabi music transition]

Mariko Sakamoto 29:58

Since her last recording, Ashley and her family continue to share caregiving for Devki at home. Recently, they've been watching a lot of daytime talk shows together, and Devki loves the drama.

Mariko Sakamoto 30:13

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 30:36

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 31:09

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 Devereaux 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.