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Becoming a Caregiver with Dia Rahman

November 15, 2021
56:00

Episode Summary

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are very excited to be accompanied by Dia Rahman who is a first-generation immigrant and a young caregiver working in tech. Dia is the oldest daughter in her family and became the primary caregiver to her mom in the middle of the pandemic after she had a horrific accident. She has been a patient herself since the age of 16 and that is why she uses the insights she gained from her experience as a way to navigate the health care system to advocate for her mother and her complex needs as a caregiver.

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Episode Transcript

Narrator: Welcome to Simply Unbreakable with Kristy Dickinson and Brenda Agnew, a podcast from Chronically Simple. Simply Unbreakable is about telling stories, learning from each other and forging new ways to navigate the healthcare system together.

Kristy: Hello, everyone. Welcome to another episode of the Simply Unbreakable podcast. I’m your host Kristy Dickinson and I’m here with our co-host Brenda Agnew. Today we are very excited to have Dia Ramen join us. I first met Dia via Twitter chats that she and I participate in, and Dia is a first-generation immigrant settler, and a young caregiver currently working in tech. She is also writing her thesis as a part-time public health grad student. So, just a few things on her plate.

[Laughter]

She is the eldest daughter in the family and Dia became a primary caregiver to her mum in the middle of the pandemic after a horrific accident. She has been a patient herself since the age of 16 and she uses the insights she gained from her lived experience as a way to navigate around the healthcare system, to advocate for her mum with the complex needs as a caregiver. Dia, we are so thrilled that you could join us today. Thank you so much for coming on. Would you like to start by just telling us a little bit about yourself?

Dia: Sure. Thank you so much for having me. It’s an honour to be here and it’s really amazing to be having this conversation and we, as you mentioned, connected on Twitter. A bit more about me. I am a caregiver and it’s a interesting space that I’m navigating around as part of the pandemic. And I became a caregiver by definition earlier, but more so the complex care need aspect came to the forefront during the pandemic after that horrific accident. And transitioning. I think that would be the word. Transitioning for the last year and a bit, year-and-a-half. It actually has been exactly a year last week when that happened.

And I also own to my privileged in terms of having that lived experience of being a patient, knowing how to navigate the system. Also being a public health grad student; that also gives me a privilege in terms of when it comes to communicating with the surgeons, specialists, and how do you speak their lingo, and almost influenced in certain ways to be the equal member in the healthcare team or in the care team and care coordination.

Kristy: That’s a lot on top of, you know, everything else that you’re doing, navigating the healthcare system in any way, shape or form is a – it’s a lot, especially when it’s for a loved one and, you know, layering during a pandemic and, as a result of an accident, that’s something that neither Brenda nor I have had to experience. But I guess no one really plans to become a caregiver. So there is that. Just transitioning from, you know, life before to what life looks like now.

Dia: Mm-hmm.

Kristy: How have you found that transition? In terms of support and resources for you, how has that been?

Dia: In one word I would say cathartic. And more so if I elaborate on that, I think it’s more so being thrown in the deep end and not knowing how to swim, and eventually learning how to swim out of survival mode. And then finally getting the best of things.  

And going back to the point about it being an accident, that entails legal work. That entails paperwork. Working with other stakeholders that I cannot obviously talk about in details. But on top of the healthcare navigation, and tons and tons of paperwork, phone-calls, going back and forth. And in one way I’m grateful that [unclear 00:04:34] things at the same time, but it was very isolating and lonely, for sure. And now I’m starting to understand, like, another layer of complexity is, like, the social aspect of it. And we’re still in the middle of pandemic and I’m choosing to stay socially distanced. I’m double vaccinated so whenever I meet my friends outdoors, like, well, hiking and whatnot, I’m starting to realize that caregiving is such a interesting topic that some people are very uncomfortable with.

Like, because first of all it is unique depending on what age group you’re in. Second of all, there’s a lot of discomfort now in discussing it because there’s a culture piece. There’s a piece around how as a society we take care of our loved ones who are not, quote unquote, able-bodied, right? What does that mean? There’s so many layers attached to it.

So I’m learning lots. I’ve learned lots about myself, foremost, and how resilient I can be. Even though there have been times that I have had breakdowns and it’s been really lonely sometimes. But at the root of everything I’ve found myself again.

And I’m grateful that my mom is still here and I’m really grateful for that we have this. Now we have a support network that we have established, whether through the means of working with a case manager, who is our occupational therapist, and, like, right now, like, I’m in the process of getting a fully vaccinated [unclear 00:06:17] come in help out and, like, take mom for walks several times a week. Like, usually I do it every day. But I’m recognizing that I have my limit, and also working.

Kristy: Yeah.

Dia: So, yeah. There’s lots going on, for sure.

Brenda: So I have a question for you Dia but before I do that I just want to say that, you know, I resonate with you on a number of different levels. First of all, in my other career I do work for a personal injury law firm. So I know very much about what you’re referring to. And also we have been through the legal process for my son. He had a medical negligence case. And so we had to navigate that on top of caring for his needs and everything that was going on with his diagnosis, his medical complexities. Also having to deal with paperwork and legalities and that whole process. So kudos to you because it is an additional layer of stress on top of everything. You know? Your hope in the end obviously is to have a positive resolution settlement so that you can provide what you’re going to need for that person in your life. But it’s complicated to go through.

But the question I – so Kristy and I are usually – we’re very much aligned with a lot of things but, like I said earlier, when we were introducing, is I come from a caregiver lens. Kristy comes from a patient lens. You know, we can somewhat understand each other’s perspectives, but you come from both. So, you know, I’m just wondering, maybe from a navigation perspective or from a management perspective, do you see differences between navigating, let’s say, the healthcare system or, you know, things like that from a caregiver perspective versus being a patient? Like, what have you found those journeys have been like from two different perspectives?

Dia: That’s a really great question. Definitely I’ve noticed differences. I think it goes back to autonomy and agency. I believe that – I have been asked more about my opinion as a caregiver than a patient.

Kristy: OK.

Dia: When it comes to my own patient journey.

Brenda: Right.

Dia: And maybe that could be the fact that I became a patient at the age of 16 when I had a bunch of specialists and XYZ and finally got those diagnoses that I got in my early 20s. But it was really interesting to hear, like, decision making is – sometimes I also have to, like, gently, but I’ve learned how to communicate assertively but respectfully to providers being like, hey, you can ask that question to her, to my mom, my loved one. She’s right here! Because they’re not addressing her. [Laughter]

Brenda: Right. Right. Yeah.

Dia: Just because she has a condition or she has complex care needs doesn’t mean that she doesn’t have agency or autonomy. So going back to your question, I found that as a caregiver definitely I have more agency when it comes to decision making. But it also becomes, like, more responsibility. Whereas as a patient I found that unless I spoke up explicitly, or asked questions, which would also make people uncomfortable, especially like doctors sometimes, which is interesting because, as the patient has the right to know.

Brenda: Right.

Dia: So, yeah. I don’t know if I answered that question.

Brenda: No. No. You did. And, you know, and I always have sort of said to Kristy, like, people say to me, you must be exhausted, you know, as a caregiver. You know, I’ve been doing it for a long time. He’s 14 now. And – but I always feel like it’s got to be way more exhausting as a patient navigating the system or navigating – because you’re sick.

Like, I – so when I take my son to the hospital, you know, or a procedure, whatever that might be, you know, I’m a little bit more on my game. Not all the time. Sometimes I’m exhausted. Sometimes it’s three o’clock in the morning. But sometimes, you know, most of the time I’m on my game, right? I’m prepared; I’m ready to go; I’m his advocate. You know? When you come in as a patient, again, you’re sick. You’re tired. You’re – whatever is going on with you, I mean, that’s got to be so much more difficult, I think, to advocate for yourself, to navigate things, because you’re just not on your game. You are not. You know? You’re sick. That’s the bottom line—right?—depending on what you’re dealing with.

So I always feel like, you know, I have it a little bit easier, if you will, as a caregiver navigating the system, because I’m, you know, I’m not feeling ill at that time, if you will.

Dia: Yeah. No. You’re totally right. And it’s also I noticed that, I mean, by now the system works in certain ways where documentation is everything.

Brenda: Mm-hmm.

Dia: But no, like, sometimes documentation can be incorrect, but it’s everything. So –

Brenda: Right.

Dia: – as a caregiver it’s easier to have that documentation prepared or, like, say things like have that narrative ready so the provider is, like, more like [unclear 00:11:28] because they’re still burnt out due to the pandemic and other things to begin with.

And I’ve noticed that, like, the dynamic steps, the moment they see that you came in prepared.

Brenda: Right. Yes. Yeah.

Dia: Right?

Brenda: Yeah.

Dia: And then they see the patient differently.

Brenda: Yes. It’s true.

Dia: So I totally get what you’re saying. It’s, as a patient, to be in a vulnerable spot by yourself, it makes me question whether there’s room for advocacy as a patient by themselves, because it is a privilege to have someone, a loved one with you.

Brenda: Yeah.

Dia: Not everyone is afforded that, right?

Brenda: No. No. Yeah. And it’s interesting you should say too about, you know, when you’re prepared, and we talk a lot about that. You know? And when I’m prepared to go in, you know, when I take Maclain in and we know something’s coming up or I’m really well versed in what that language or what that discussion is going to be like, I do feel really empowered, because I do feel prepared for it. And, you know, it really is amazing to me the perspectives that shift when you have an informed, prepared patient. And not everybody can be like that or, you know, a caregiver. Not everybody can be like that. Again, you know, depending on the crisis you’re in or what’s happening.

But once I start using the lingo, once I start, you know, showing that I know what I’m talking about, I have the documentation, this is not my first rodeo. It is amazing how it shifts. And I’ve always said to Kristy, I know from people who have told me anecdotally but I can’t imagine what it must be like for someone who is an immigrant, whose English is not their first language, who just doesn’t have that capacity to advocate or doesn’t have that voice. I can’t imagine how difficult it is for them. Because, you know, they’re right away at a disadvantage, and that just – that’s heartbreaking, to be honest, and I think that’s going to affect the quality of care they get, also to be honest.

Dia: Frankly, I see it with my mom. And that’s why I care-give. Like, as a family, we – like, there’s no if, but or what. It’s like figuring out who can go. Usually it’s me because I understand the system better and I’m up to date with everything. But yeah, there’s no way. Because my mom, she speaks English but English is not her first language.

Brenda: Right.

Dia: And a lot of other things make her more anxious in that environment, which is very stressful to begin with.

Brenda: Sure.

Dia: And unconscious bias, right?

Brenda: Yes. Absolutely.

Dia: I mean, very grateful for the care we have gotten. Like, when my loved one was in the rehab hospital for a month.  They did a stellar job but there were moments where unconscious bias was very apparent.

Brenda: Mm-hmm.

Dia: When you have a cis white patient versus someone like my mom in the same room, but the quality of care was totally different.

But anyways, it’s really hard. It’s definitely a place where patients don’t have the convenience or accessibility that they need, whether it comes to communication or accommodation or other things.

Brenda: Right.

Kristy: Were you impacted by the mandates or the restrictions during the pandemic? Like, did your mum have to go in alone?

Dia: Yes. Latest ER visit. I’m grateful they kept me in the triage area. I wasn’t allowed to go in-in. So even though, like, I was told that they were going to call me when the doctor comes in. But that wasn’t the case. And that’s, like, the most recent instance. But overall, like, when, like, the hospital, like, when she was staying enough so for that long, there was an outbreak on the floor. A couple times. So that was pretty stressful, but really grateful that we’ve talked to the manager on the floor and then we talked to patient relations.

And they also said that given the fact that safety – patient safety is a concern. And obviously it is a headache for the hospital and for, like, patient safety is a concern. So it’s better that essential caregiver is given access to provide necessary care. And also the fact that the nursing shortage. Like, some nurses were taking, like, care of, like, six to nine patients some days, because of shortages, and that is – I am not an expert but from what I know, that is not the ratio it should be.

Kristy: No.

Dia: So, yeah, definitely.

Kristy: Brenda and I have talked a bit about this over the last 18 months, 19 months – I don’t know. It feels like forever that we’ve been in this. But it is, like, families and essential caregivers, they provide so much free caregiving and free support that our healthcare system has come to rely on them. I know I myself as a patient have come to rely on my caregiver being there with me. Just for things like getting me water or – Brenda’s the queen of getting the warm blankets. She knows where they are all kept. So I like to bring her with me when I can.

But those types of things, let alone like, you know, like Brenda will when she’s there with Maclain, like, she rolls him, she moves him, she feeds him. Nurses that are caring for that number of patients don’t have the time to do that. So the impact on the quality of care is 100% impacted by, you know, by removing this essential part of our system. This, you know, cog in our wheel, you take that out and it’s felt by every stakeholder.

Brenda: Mm-hmm. Mm-hmm.

Dia: Definitely. Yes. For sure. It also, I feel that – not I feel. I’ve seen it. I won’t go into specifics, but the fact that the reliance on unpaid care and overreliance on care provided by caregivers or family, it is also affecting the system or the healthcare, like, clinics or hospitals. Because errors happen a lot of the times, and I’ve seen it happen in our cases too. And the only reason that it didn’t become fatal or other things is because caregivers were there. Like, me and my sister and my dad – we were there. And I was like, nope. Like, we’re not going to let this go. Like, we’re going to have a conversation.

Another point is, like, on the economic side. Like, this whole talk about care economy. And Canada is not really – we just had the election and whatnot, like, but how does care economy look like, moving forward, given the fact that so many people have left work force, work labour force, mainly women, because they have a caregiving role, whether it’s a parent or a child or a loved one. How are you going to support that and build an equitable labour force?

Kristy: Right.

Dia: It’s not sustainable. It’s not equitable. It creates more unjust conditions for even people that are doing this online work and they need to be paid better, or protected better because they are usually in precarious work environments, right? So, yeah. So many layers right there.

Kristy: That’s a lot. I think there are there’s so many layers.

Dia: [Laughter] Going on a tangent.

Kristy: No; but it’s a tangent that, you know, Brenda and I have spoken about you. I don’t know if we’ve ever talked about it on this podcast but I know we’ve spoken about it together and it’s a topic that I don’t think gets enough attention or press time, and maybe that’s because people – like, they just don’t know how to fix it other – because, you know, there’s no more money. There’s no more access to resources. We’re going to come out of this with such a gaping, massive hole that the only way to rebuild it is to start from scratch in some areas. And I hope that where we start from is a, at least in my opinion, a table that everybody gets a seat at. Patients, caregivers, healthcare providers. Everybody that’s involved in the system needs to have a voice as to how they are utilized. Right?

Brenda: Mm-hmm.

Kristy: And what is expected from them. It’s unrealistic, like Brenda mentioned. It’s unrealistic to expect a patient who doesn’t speak the language to navigate a system that they don't understand.

Brenda: Mm-hmm.

Dia: Yeah.

Kristy: And it’s unrealistic to expect a caregiver to quite their job to take full-time care or to leave the workforce to care for their loved one because there’s no other options for them.

Dia: Yeah.

Kristy: It’s just not – you know, it’s not sustainable.

Brenda: Well, and I think, too, as you were talking a lot of things were coming up but, you know, this whole idea around essential and, you know, people leaving workforce. And I also think sometimes during this whole pandemic I realize, you know, to me essential was – the definition changed. You know?

Dia: Yeah.

Brenda: It was what was convenient for people, because you’re either essential or you’re not. And we heard people say, you know, we were looking at, in long-term care homes, people were being declared essential caregivers because they needed to have the support in long-term care homes. But in other residential care settings, they weren’t deeming parents – or, sorry. Yeah. Parents or siblings whoever it be. Essential caregivers. So you’re like, well, how does the long-term care home across the street deemed someone to be an essential caregiver to come in and help but the residential care facility across the street that may have pediatric or may have, you know, young adults, they can’t be – their caregivers can’t be declared essential?

So, again, there’s no consistency and – so you’re, again, are you essential or are you not?

Dia: Yeah.

Brenda: Your role is the same. The assistance you’re providing in those facilities is the same, but one could get it and one couldn’t. It’s just – it boggles my mind how inconsistent we are with so many aspects of healthcare and healthcare supports.

Dia: It’s very true. We navigate around two hospitals, one being rehab and obviously multi outpatient clinics. And the procedures and definitions and whatnot is – it varies so much. Not only about, like, essential caregiving but follow-throughs or policies or, like, communication. Like, always I circle back at the end to, like, when we have an appointment, especially our surgeons, like, reiterate what is the next step. I feel like that misses the point as well because, yeah, yeah. You’re fine. Let’s go, like, I’m like, we know that this is a complex care case, so what is the next step? Would you like me to send this to the specialist or surgeon? Like, close to you. And I’ve learned to do that as a caregiver because from my patient – being a patient those days, like, I knew that those gaps, communication gaps, cost a lot of effort and time down the lane when it comes to, like, surgery and whatnot.

So what I mean about, like, essential, it is definitely different depending on where you’re going. And sometimes you have to, like, break it down and speak their lingo and not – I’ve learned strategic communication, and I think I’m going to utilize it in my work life too because it’s like, well, like, they wouldn’t let us visit her or whatnot, except for, like, a couple days a week and I’m like, well, like, given the fact that at high risk and blah, blah, blah, blah, blah, blah, here are the reasons why you should blah, blah, blah. And they’re like, OK, you know what, we’ll get back to you. Because we are talking to them from their point of view, and how do we save their time and effort and lessen the load that they have?

That’s how I was able to navigate around that inconsistency in, like, what essential means for our family.

Kristy: Mm-hmm.

Dia: But that cost a lot of, like, time and effort and going back and forth, advocacy, right? And not everyone can afford that. I have to leave. I have to leave work. I cannot do this while working full-time.

Brenda: Right. Right.

Dia: So I totally hear what you’re saying.

Brenda: Yeah.

Kristy: And listening to you, the one thing that I think we are missing, is you guys are – like, you’re talking about it very factually, right? Like, this is strategic communication. 100%, that is so valuable. But what we’re overlooking is we’re talking about this in hindsight. In the moment when you’re trying to advocate for a loved one who has been in a horrific accident or is having a life-saving surgery or needs, you know, some type of care in a crisis situation.

Dia: Mm-hmm.

Kristy: I don’t know about you but I’m not pulling my – like, I’m an effective communicator but when I’m at the worst of it for myself or, heaven forbid, I’m trying to advocate for a loved one, I’m not at my best always.

Brenda: Mm-hmm.

Dia: Yeah.

Kristy: So we take, like – I mean, I think it’s fantastic that we’re able to sit and kind of boil it down from a 40,000-foot view now.

Dia: Yeah.

Kristy: But when I think so much of that mental health side of things is lost, when we’re trying to deal with it in the moment, we’re also trying to deal with, you know, anxiety, vulnerability, overwhelm, stress, sadness, anger, frustration. Like, you name it.  

Brenda: Mm-hmm.

Kristy: There’s a whole trunk of emotions that come with each of those visits. Right?

Dia: Oh yeah. You’re so right. Definitely when situations were not – when the communication fell through, when they’re like, oh, oops, our bad, we don’t know what happened but yeah, we got to go do this and that and we’re like, wait a second. What?

Brenda: Right.

Dia: Let’s rewind. And then being seen [unclear 00:26:14] – it was to be told to just sign off the consent form. We’re like, not we; I. And that was an interesting phase that because family-wise we were like, what’s going on? And everyone has a different understanding of the system and what’s being asked and whatnot. So I had to put my foot down. I’m like, nope. Like, how much time do we have? They’re like, oh, we want to go in right now. I’m like, we are on our way to the hospital. Tell me exactly. Are you going to really go to be going to the ER in 30 minutes? Oh sorry. OR in 20 minutes. Quiet. They’re like, no. We prefer that you [unclear 00:26:54] ASAP, that we can [unclear] the process going. I’m like, well, you know what? Like, we’re on our way. 20 minutes away. I don’t think you’re going to go into the ER in 20 minutes. I mean, we’re talking about COVID here. Pandemic. Like, everything is feeling – definitely didn’t have the strategic communication then.

But sometimes, like, it’s like, you got to put your foot down. And that also meant, like, a lot of other conflicts around me including, like, in the family and whatnot because you’re all, like, in a flight and fight.

Kristy: Right. Yeah.

Dia: So it’s really hard. We don’t talk enough about the emotional labour. I spoke of it too. It’s our loved one and we’ll do it. No questions asked.

Brenda: Yeah.

Dia: But the aftermath, you are so exhausted.

Brenda:PTSD. [Laughter]

Dia: Oh yeah.

Brenda: Oh yeah. I mean, there’s times where I can’t smell the smell of hand soap from a hospital because it just, you know, it brings back. But it’s interesting as you guys were talking because, I mean, I’ve had my breakdowns. But, I mean, they’re fewer and far between now because I’m just more used to it now. But what I find gets me is I actually do better when there’s an element of aggression or – I do – I do well when there’s a bit of a confrontation. So when I have a physician, and I don’t want to put them in a bad light, but if there’s a conversation with a physician or, you know, a surgeon, and it’s very adversarial, I am on my game. That is where I am like, let’s do this.

Dia: Yeah.

Brenda: Where I struggle is the person who says to me, I am so sorry. Or, you know, I wish I could help more, or we’re going to help you, and then I just break down into tears because, you know, because I’ve let my guard down, because I’m not in that fight mode, right? I’m not in that fired-up mode. And I find that’s where I get really weak is I almost need the doctor to be a little bit – a little bit, you know, pushy or punchy with me. Because the minute that someone shows that kindness or shows that caring, which is what you want, but the minute they do that, the tears flow, my guard comes down, and that makes it more difficult for me. You know? That’s where it becomes really emotional for me and it becomes harder to manage.

So and it’s funny because my husband will say to me, like, we’ll go into meetings and I – like, my, you can’t see me because, you know, this is a podcast but, you know, my shoulders are up around my ears. I’m already angry. And he’s like, we haven’t even left the parking lot yet. Like, why are you so angry? And I’m just so riled up and I’m so ready to go. Because I think it’s just a defense mechanism, right? You just go in like that and then – yeah.

Dia: Oh yeah.

Brenda: So it’s interesting, though, like when we’re just talking about that emotional piece and that.

And then I always say, like, I end up, when we come back from a situation we’ve been in that’s been really complicated or really difficult. I mean, I have a three- or four-day post-hospital-admission hangover.

Dia: Yeah.

Brenda: Like, I am exhausted from having to be on 24-7 and be that person and ask those questions, and I’m zonked after. Like, it’s a lot, because your emotions just, you know, have gone through the ringer.

Dia: Oh yeah. 100%. We went to an appointment yesterday and – I’m fine but definitely I know I’m a bit low energy today. And allowing myself that grace and it’s like part of myself [unclear 00:30:26] this point it’s like, you know what, I’m not going to do too many things that will rile me up or, like, get me back into the flight or fight mode. Today or, like. And I can totally relate to you. Like, usually if it’s like an ER visit or a hospital visit. Brings all those memories back, and it’s really tough.

Brenda: Hmm.

Dia: And going back to you about this point about when the provider shows the empathy, I can so relate to it. A couple of things. I remember the critical care ICU nurse; she’s so tough. And, like, bless – god bless those. I see nurses. Like, they’re so – they’re badass. I have to say –

Brenda: I couldn’t do it. Yeah.

Dia: I, like, seeing them do things, like, very closely. And we were only allowed for, like, a couple of hours per day. And that was, like, extreme accommodation. Like, usually they don’t even allow that during COVID.

Kristy: Right.

Dia: I know the critical care ICU nurse. Like, looked me in the eye. She’s like, I’m really sorry about your mom, but she will make it, so will you. This is really tough right now. But you will be even stronger coming out of this, and I’ll pray for your mom. And immediately I – I just – yeah.  I just – [unclear 00:31:38] now I’m getting a little emotional. Just –

Brenda: Yeah.

Dia: – time somebody showed me empathy when –

Brenda: Yeah.

Dia: – [unclear 00:31:44] like fight or flight mode for so long – [unclear 00:31:45].

Brenda: Yeah. Yeah.

Dia: So I hear you. It’s –

Brenda: Yeah.

Dia: It’s a tough place to be in, both as a provider and a patient and a caregiver. But a little bit of humanity goes a long way, I think.

Brenda: I agree. Humanity. I always say humility. A little bit of humility is really important.

Dia: Yeah. Yeah.

Brenda: But yeah. I mean, you know, again, to your point it’s been those people who – it’s the tough love. I don’t want them to – I don’t want anyone to tell me something to make me feel better, just to make me feel better, but it’s that person that says, you know, you’re stronger than you think, you’ve got this, there’s been other people come through before you. You know? You’re good. And it’s true. Like, you know, it’s the nurse who comes in that task on the shoulder who’s like, Mum, you got this. Go get a coffee. I’ve got this.

Dia: Yeah.

Brenda: And then I’m like [crying]. And sometimes I don’t know what to do. Because if they’ve had me there for a chunk of time, they’re like, OK, she’s a tough cookie. And I told this story before but we had to chase down a diagnosis. My son has really bad GI issues, and we had been chasing down some assistance for a long time. I mean, probably seven years, two different hospitals, and it was really, really difficult. And so we finally got this referral and we walked into SickKids and the GI doctor was there and I’d been so excited. And so – and she’s very stoic and I’m very stoic and she comes in and she says, you know, she’s asking this question. She said, listen. No matter what, regardless of what’s caused this, regardless of anything else, we are going to help, we are going to get this, we’re going to get your son what he needs, we’re going to get there. And I started bawling my eyes out.

And my husband is looking at me like, who are you? Because you don’t do this. And she didn’t know what to do. She was doing – like, she was – you could tell she was so comfortable and she was trying to do the old, you know, there, there. And it was just because she had shown that understanding of what we had been through, the journey we had taken to get there, and how much of a struggle this had been. And for her to just say those words that were, you know, we are going to help. That’s what it was. I’m going to help you regardless of anything else. Well, I just, yeah. Broke down.

Dia: Oh.

Brenda: And it was funny because every time after that when I’d see her she’s got to walk in assessing the situation, like, is she going to cry today? Is she – how is she today? But, you know, it definitely set the stage for our relationship moving forward and just had this different element of trust and understanding.

Dia: Of course. Yeah.

Brenda: But, and it can make a big difference, right? When you’re in that journey.

Dia: For sure. Level of stress is very important, and especially when it – and nurses do so much. I think they do so much. And being that side for more than three months, also, it just taught me so much more, and I have so much respect for nurses. So what you saying definitely, like – I think also they see – I really feel for them. I really hope they get better supported by our government.

Brenda: Hmm.

Dia: Because they really see everything on the front line. I mean, doctors are amazing too but, why, nurses did everything for my loved one.

Kristy: Nurses keep that hospital going.

Brenda: Oh yeah. They really do.

Dia: Oh yeah. Like, if there’s a nursing shortage, which I saw on the floor, it’s like – I always – I can’t share, like, specific details but –

Kristy: Oh yeah.

Brenda: Oh yeah. 100%. Absolutely.

Dia: Yeah.

Brenda: And Dia, I have another question for you if you don’t mind, and I feel like I want to be intrusive but I – so, again, you know, you’re already – you’re dealing with, you know, your own health issues and you’ve been a patient since you, you know, you were 16, and have this, you know, catastrophic event that happens with your mother and you’ve stepped into this caring role. You know, how has that affected your health? Like, how is that – I mean, has that had a negative impact? Have you been able to take care of yourself as well? Like, how have those two things worked together during this?

Dia: Yeah. And so I struggle with my mental health a lot [unclear 00:35:58].

Kristy: OK.

Dia: Winter was horrible. And I think it was, well, it was like, a combination of pandemic, indoors and everything.

Kristy: Hmm.

Dia: But it really made me reassess, recalibrate my boundaries. I – previous to becoming a primary caregiver, I was very active in my community, helping women. Especially women in tech. I, like – I really care about community, helping people. And I also medicate – like, still I do medicate a couple hours, a few hours per week doing things like – but I realized that I needed to step into my power in a sense that claim back a lot of my time and focus on what needs to be done for me.

Kristy: OK.

Dia: Sometimes that means that I have to do a lot of, like, proactive maintenance in a sense that – so I do have, like, chronic pain and stuff because I had a car accident several years ago so, like –

Kristy: OK.

Dia: I have an amazing RMT that I’ve been going to for years. So, like, almost, like, setting a calendar reminder. OK. Check in and see, like, I need to book something and I book it. I’m not waiting for, like, a [unclear 00:37:11] to flare up and then be like, oh my god. Like, because then who’s going to take care of Mom and do other things?

Kristy: Yeah.

Dia: I’ve learned through trial and error what works for me in terms of, like, regular self-care and, like, also, like, surrounding myself with good people.

Kristy: OK.

Dia: Whether it’s digitally because, like, we are in a pandemic and a lot of my – I feel like now a lot of my online friends have become, like, good friends.

Brenda: Wow.

Dia: And it sounds strange but – [unclear 00:37:39]

Brenda: No. Not at all.

Dia: – so yeah.

Brenda: Yeah.

Dia: So being proactive with my own care and carving out that boundary and that sometimes that can also mean, like, hey, pretend like I’m not home. You’ve got XYZ. If you need something, there’s that. There’s my sister. Like, XYZ. I’m going to need that two hours off. Like, unless the house is burning down. [Laughter]

Brenda: Right. Yeah.

Dia: Yeah. So that’s what I do to take care of me. And that has gotten me back to feeling better about myself.

Brenda: Good.

Dia: Yeah.

Brenda: OK.

Dia: So that’s something there. Yeah.

Brenda: Yeah. Because, I mean, just to what we had spoken about earlier is, you know, I know for me as a carer, and I also struggle with my mental health and I make no secret of that. So I’m obviously – I can obviously care for him when I feel better, when I care for myself. As a typical caregiver that often falls to the wayside. I mean, for parents it does but as a parent and a caregiver it falls to the wayside.

Dia: Yeah.

Brenda: And so that’s why, you know, I was curious. Because I’m not – you know, so I don’t want to diminish mental health because, like I said, it’s a big part of who I am and I do struggle with it. But when I look at, you know, other people who have chronic conditions or chronic disorders and then to try to manage that and then take care of somebody else. Like, that’s just – I can’t even imagine, you know? It’s just such a different level.

Dia: It is definitely hard. I’m grateful that my journey as a patient, I did have a surgery, like, years – like, a couple years ago and, like, the four months [unclear 00:39:22] has been good. But then, like, there are, like, it’s part of life. Chronic pain. I have something that I’ve chosen – not chosen but I have accepted that it will be part of my life and it is a maintenance piece that I have to stay committed to. I also have a therapist. Like, I am committed to that.

Brenda: OK.

Dia: [unclear 00:39:42] And I really took my self-care – and I think self-care is such a term that is so centred towards, like, consumerism. It’s not about, like, what you’re buying yourself and what not; it’s that practice of, like, working out or, like, having that 10-minute walk.

Brenda: Mm-hmm.

Dia: And those little things should really help to shift your perspective. And I’ve learned to say no. And no is a sentence on its own. And if you’re not going to respect my boundaries, well, you know what? I mean, yeah.

So it’s really tough. I think as women we are socially expected to be people pleasers. But a lot of the times it’s like I’m learning that, especially also working from home, how do you [unclear 00:40:35] that boundary and communicate? But also it’s a complex conversation to be had. If their employer knows that, like, you are a caregiver, and I’m really grateful to be working with a very supportive team right now where other members are also caregivers. So they understand.

Brenda: OK.

Dia: I think it’s very important to build that psychological safety. But does it happen everywhere? No. I’m not –

Kristy: Right.

Dia: I think there’s – there’s so much research out there saying that so many people don’t disclose their caregiver status to their employers because they’re afraid that that will result into a lot of other types of biases. So, yeah.

Brenda: Right.

Dia: Another tangent.

Brenda: No; that’s not a tangent. I mean, that’s a real point, right?

Kristy: Yeah.

Brenda: It is. And we’ve had conversation. I mean, I just did a webinar, what, last week or the week before that was all about caregiver and caregivers in the workplace and how employers can best support caregivers in the workplace and the struggles that caregivers – that are unique to caregivers. And, you know, yeah. And just that there needs to be different accommodations for people who are caregivers. Because I think there’s just this assumption by society that – I mean, I know I find it as a parent when people are like, well, OK. But, you know, you’re still his mom so you’d be taking care of him regardless. And I have to say, well, no, he’s 14. And so most 14-year-olds, I’m not having to dress them, make their dinner, feed them, bathe them, turn the TV channel, all of those types of things. So those fall into that, you know, that caregiver bucket.

And so I think it can be difficult to try to explain sometimes. And even, like you said, even culturally or there’s, you know, there’s cultures but the expectation is that you’re going to take care of your parents or take care of your grandparents or take care of someone. That’s what just happens in the natural evolution of life. But that doesn’t mean that that doesn’t come without the burdens that come with being a caregiver. That’s a real thing and it’s just because it’s maybe a natural progression.

And I try to explain to someone there’s a big difference between taking care of a parent who’s become elderly because they might need some assistance with daily activities or mowing the lawn or whatever. That’s very different than taking care of a parent who has medical complexities, a lot of things going on. You know, again, they’re not comparable, in my opinion. You know? One is much differently. Yeah.

Dia: Yeah. For sure. It’s – that’s something that I’m learning to do – the explaining piece – because it’s like I’m getting messages from friends. Oh still taking care of Mom? In my mind I’m like, when I read that text I’m like, what do you mean by that? Like, that’s my mom.

Brenda: Yeah.

Dia: And I’m like, you know what? I’m not going to respond right now because I am reactive right now so I’m going to let it simmer and, like, think about, like, a neutral-tone response to that. Because I’ve got no energy or I don’t want to put energy into this whatever is going on. Because a lot of people – I think going back to this thing on, like, perception, right? People’s perception of caregiving is totally different and it is highly influenced by what society thinks it should be.

And thank you for sharing a bit about how you explain things because that’s something I’m learning to do right now in my role. And also sometimes it’s just that piece around, like – I think in the pandemic it’s really highlighted how we need to change the way we look at caring for people, our loved ones, whether it’s, like, elderly or kids with disabilities or with, like I said, accessibility needs.

And it’s going to get even more complex with long COVID. I’m not trying to minimize things here but it’s a part of the reality. Like, I had COVID and I’m grateful that I’m functioning relatively normally. But a lot of friends that I talk to who had COVID, they’re like, yeah, like, I don’t know if this is, like, burnout or long COVID. And, you know, so we need to shift our outlook on how caregiving fits in into the society.

Brenda: Right.

Dia: I think it’s affected everyone’s life, so.

Kristy: Do you think, one thing we haven’t talked about and because it’s a podcast, you know, our listeners won’t be able to readily see the age difference between the three of us. [Laughter]

Brenda: What are you talking about?

Dia: What are you talking about? Yeah.

Kristy: Brenda is in her golden age. And then there’s me in the middle.

Brenda: Whatever! There’s, like, three years’ difference between us or something. Four years’ difference. Get lost. [Laughter] But you’re much younger, Dia, is what the point is, so.

Kristy: Yeah. Yeah.

Brenda: So you’re much younger than both of us.

Kristy: And so my question to you is: in your experience, do you think being a younger caregiver has posed greater challenges for you, or – you talked a bit about the perception with your peer group. And I know, you know, even that, you know, fast forward 20 years to where we are, and I probably wouldn’t get those same questions because people my age would know if you’ve taken on a caregiving role for a medically complex parent, yes, we are still caring for them.

Dia: Yeah.

Kristy: And so just that lived experience that sometimes, you know, you don’t have until you reach a certain age.

Dia: Yeah.

Kristy: How’s your experience been from that perspective?

Dia: It has been lonely sometimes. Not going to lie. I feel very isolating initially but I think that’s why I became a bit expressive and [unclear 00:46:31] on Twitter, because I really did not have a community at all. Really grateful that through Twitter I’ve also [unclear 00:46:38] I have several friends who are young caregivers and we have check-ins whenever life allows it. And our conversations are very in-depth in terms of what we are doing. Like, a friend, just literally I was having a long conversation with her yesterday, just catching up, and she talked about the caregiver recharge program that is supported by the Saga Lynn system.

Kristy: Hmm.

Dia: I mean, obviously there’s a waitlist to it. But things like that I’m really grateful for. Yeah. My village has become way smaller and I don’t – initially I felt like I had to explain a lot of things, but now it’s more so I think I feel more self-empowered where, like, yeah, like, I don’t have to explain anything to anyone. Unless it’s my mom’s specialist or surgeon; then I care. [Laughter]

Kristy: Hmm.

Dia: And yeah. I lost touch with friends. And I’m also – this is kind of the perspective that, like, I was very involved in the community and now people, I guess, notice that my energy and attention is somewhere else, and now some of them know that I am a caregiver and I own it. But, again, it goes back to the boundary. And yeah. Like, a lot of projections and a lot of [unclear 00:47:51] like whatever caregiving means to them, is I see that there is respect and curiosity in the other side, in my peer group, where they want – they’re generally curious and want to learn and whatnot, but they’re just part of life, as Brenda mentioned. Evolution of life. Like, all of us at some point or another will become caregivers for the people we love.

Kristy: Mm-hmm.

Brenda: Yeah.

Dia: Yeah. Long story short: very isolating but throughout this journey I really have found friendships and support from key people who are going through a similar or same journey or who have recently, and I’m really grateful for that. I – yeah. There’s no way else to put it. It’s a very interesting space to be in right now. [And things to do with the pandemic? 00:48:42].

Brenda: I also find too that as you were talking, Dia, I was thinking about, you know, I have to be really cognizant, too, of – so, you know, we try to run our life, like, normal and things are normal. And I think that sometimes people don’t always remember that we have a child with a disability or that we have these extraordinary pressures on us because we just do. It’s just what our family has always done. And I have to be careful sometimes. You know? And I was saying to someone the other day, you know, a friend of mine said, oh, I’m tired. I thought, you’re tired? You’re tired? I’m like, I’ve got, you know, two jobs. I’ve just started a digital marketing course. I have two teens, my youngest son has cerebral palsy, and I don’t [unclear 00:49:31] you’re tired? [Laughter]

But, you know, but then I have to take a step back to say it’s all relative. I don’t know what is going on in their life but, you know, when I hear things like that I think, are you – are you for real right now? And I really have to watch myself in my peer group because – and listen, all of them would be around for me in a heartbeat. And I’ve seen that. When we have been in the hospital or something has happened, they come out to support in droves. But again, for the normal everyday I’m, you know, the same as they are. And I have to watch when comments like that come forward about how busy they are, how tired they are. I just want to –

So like you I just take a moment to not respond and remember it’s all relative and that’s just, you know, the nature of the beast. But it’s hard sometimes. You know?

Dia: It’s so hard. Yeah. It’s so hard.

Brenda: Yeah. Yeah.

Dia: Well, I really admire – yeah. Admire both of you for doing what you’re doing. It’s pretty admirable, so.

Brenda: Oh. And back to you.

Kristy: Yeah. Seriously.

Brenda: Yeah.

Kristy: Neither of us are working on our thesis.

Brenda: No. No. We’re in our golden years. That’s why, Dia. We’re in our golden years and so we can’t work on our thesis anymore because we’re too old.

Dia: I have my first right here.

Brenda: Oh good lord.

Dia: I was like I’m kind of like is that a grey hair? And I’m like, you know what? I’m going to own it. Why not?

Kristy: Yeah. Yeah. That’s been earned.

Brenda: That is – yeah. I’m blonde for a reason. And it’s not just because it’s the cool thing to do; it’s because it has a definitive purpose of hiding my multitude of greys, but I digress.

Kristy: Well, I think it’s a good place to wrap. And, like, I think that point, we’ve talked about it a few times, but just because someone carries it well doesn’t mean it’s not heavy.

Brenda: Mm-hmm.

Dia: Oh yeah.

Kristy: And, you know, Brenda, the examples that you give, Dia, the examples that you’ve given, just because you’re able to navigate it well or you’ve figured out your stride, it doesn’t mean that it doesn’t take a toll. And I think especially for younger people it’s just not as talked about. The resources aren’t there. The supports aren’t there. So it’s off – again we go back to burden, right? The burden’s on you to while you’re helping sort out your mom and make sure that she’s looked after, OK, now I’m going to go and try and dig to find resources to help me and to support our family and – I don’t know. I just –

Dia: Yeah. Yeah.

Kristy: It should be – it shouldn’t be as much – like, it just shouldn’t be so hard.

Dia: Oh yeah. It’s – I wish no one has to go through this experience. But I’m grateful for what life has offered me and us. And definitely, like, [unclear 00:52:31] in terms of when it comes to supporting women with a lot of different accommodation in the workplace. And also in the community aspect. Like, community care is so important.

Kristy: Mm-hmm.

Dia: And I feel like we don’t talk about that enough or invest in it enough. And that COVID situation is a total reflection of that, I think, from a public health point of view. And I really appreciate this chat. I honestly really, especially at this time, exactly at this time last year, I – it was a really dark place for me personally. So really grateful to have connected with you, Brenda and Kristy, I really hope that we can keep having different types of conversations like this because there’s tons of, like, room for – need for that. So, yeah.

Brenda: Absolutely.

Kristy: That’s the whole reason why we started this podcast and I’m so grateful that you agreed to sit and chat with us. And I think it’s such an important conversation. And to your point it’s not talked about enough. So if we can continue to work together to amplify the message that, you know, just, you ladies, I’m astounded by the capacity that you have to give and to care for your loved ones and continue on with all of the other things that you do on a daily basis. It’s just astounding, really.

But I do – I have to mention your socials and where people can find you because I get in trouble when I don’t close out properly. So you are working on your thesis research problem on digital health and wearables, and I’m really looking forward to hearing about that.

Brenda: That’s – Kristy, yeah. That’s – and we’re super excited for that. Yeah. [Laughter]

Kristy: And of course, so for socials you and I connected on Twitter.

Dia: Yeah.

Kristy: And your Twitter account is Dia Rahman TO. And I know I learned a lot from your tweets. You’ve got such insights and just such an eloquent voice to you. So, you know, I would recommend everybody go give you a follow. And your website at Dia Rahman dot com. So –

Dia: Yeah. Thank you so much.

Kristy: That’s where people can find you and I hope that you will consider coming back so that we can continue to have this discussion or maybe flesh a few other things out that we can, you know, the three of us can put our heads together and try and solve.

Dia: For sure. Definitely. I had a lovely conversation. And thank you so much for your time. And I know it’s a Friday late afternoon, like, after all, so really appreciate it, and I had a real lovely chat, so thank you so much.

Brenda: It was worth it. Thank you and good luck to you, and we look forward to talking to you again soon.

Dia: Ciao.

Brenda: Take care.

Dia: Take care. Bye.

Brenda: Take care.

Dia: Bye.

Kristy: Bye.

Narrator: Thank you for listening to this episode. To make sure you never miss an episode, please subscribe on Apple Podcasts, Google Podcasts, Spotify or the app you’re using now. Visit us on the web at chronicallysimple.com. There you’ll find recaps of each episode as well as links to all of our social media channels. Like Simply Unbreakable? Leave us a review to help others find us as well.

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