Katie MacDonald 3/25/25

(This interview has been edited and condensed for length)

Zack: Thank you for joining us, Katie. Please introduce yourself and tell us about your caregiver journey.

Katie:  I'm Katie MacDonald. I am from Ontario. I have been a caregiver for what I would consider my whole life, but I really didn't know that until, my thirties…. My middle brother, Neil, is a gentleman with Down syndrome…. Whatever we did my brother was always part of it. I think that's probably why I didn't really realize that I [was] a caregiver until I started getting to a place in my life where I was starting to make big decisions. It was like, where am I going to go to university?... Where am I going to locate for work?... And I realized that I felt a little lost because I had this sense of something pulling me back to… where my family was. And I thought to myself, surely, I am not the only person in the world who has ever gone through this. 

You know we were speaking earlier, Selma, you said just knowing you're not alone is so powerful, right? At that point I realized there had to be other sibling caregivers who went through these different chapters in their life as well and found ways to navigate and ways to identify their own values where they needed to go in life… but it didn't mean that they couldn't also be a brother, a sister, and a caregiver. It was at that time that I reached out to what is now called Siblings Canada… part of the Canadian Center for Caregiving Excellence. And they had just done a national survey of sibling caregivers, and they were doing a little bit of a podcast review.

I remember so vividly. I was driving home from Collingwood, which is beautiful up north, listening to this, and I was like, I feel seen. I feel understood. I get these stories. I get these people, the things that they were worried about, the things that they were struggling with, the ways they wanted to be involved with their siblings' lives just resonated deeply with me. I got connected to the organization, first through drop in informal meetups online and then joined their peer mentoring program… fast forward now, that was five years ago… I've now been running the peer mentoring program for the organization for the last four years. So that's my foray into caregiving…

I ended up moving close to home… And I was able to provide care for my brother…it was a natural progression… My parents are in their early seventies. They need a bit more breaks… My brother doesn’t want to hang out with them all the time… He's a social guy. He wants to chat with everyone. He's so involved. He does all different kinds of Special Olympics. He volunteers.  He works. He goes to a day program. He travels. He's such a unique person, and for him to also have the freedom and the opportunity to be a little more independent was also really important to me…

Zack:  What year was this?

Katie:  It would have been 2023.  It felt like out of nowhere, my mom… had a mental health breakdown. Forty years of caregiving along with all her own stuff that she's been through in her life. But my brother is who he is today because of her and her relentless pursuit of building a rich life for him, but it's come at a cost to her. She had a total mental health breakdown, but we didn't know what it was. And she's given me permission to share her story because she knows it's part of my story now… And so, at that time… our whole family kind of spun into crisis…  at the same time that this started for my mom, I moved, and my brother moved in with me… my dad and I were tag teaming it.  My dad was taking care of my mom and getting her to her appointments, and I was taking care of Neil and trying to figure out what he needed in his life.

Selma:  Katie, were you still working at the time?

Katie:  I was still working at the time. But it did come to a head…. my story of one thing ending is also my story of something else beginning. I try to keep that in mind. I had taken a week off as vacation time as most caregivers do, the theme of taking vacation time to look after their loved one. I was like, everything was really bad, and I thought we're going to have to get her [my mom] admitted into a psychiatric hospital…. I went into my employer on the Wednesday. I'd only been off since Monday. I was only planning to be off till Friday. I went in on the Wednesday, and I said, “It's not getting better. I don't know if it's going to get better. I think I'm going to need to take another week.” I had five weeks of vacation. The time was there.  And she said, “Well, I'm off on holidays next week, and someone else is off on holidays the following week, so keep that in mind when you're making your plans.”  I was completely caught off guard. Here I was, worried that my mom was dying and my world was collapsing around me, yet I was being asked to consider someone else’s vacation time? 

I have to say it wasn't just that one comment, obviously. We had a whole, leadership change. I didn't expect anything more from this particular leader. However, my leader previous to that… I know what her response would have been, and I would still be working there right now if she had been there. Because she would have said, “Take the time you need. We'll get things covered for you. Make me a list of things that you have coming up. Who on your staff can we delegate some of this to? Let's book a meeting with HR. Let's find out what your options are.” That's what she would have done.

It doesn't get better because then I went home. I really thought about it, I don't see when it's going to end with this leadership because she had just been moved in, and I don't want to work in that environment.  And I need to prioritize my family right now. I felt like I had no options. So, I wrote a letter of resignation. I didn't just silently quit, though. I called HR, and I said, “I'd like I’m going to resign. I'm going to submit my letter, and I want you to know why.” So, I brought it to their attention. They were like, oh, well, is it okay if we plan an exit interview for you sometime? There was no recognition that this situation had other possible solutions to it – that there were other avenues available to me other than quitting. At the time, I wasn’t aware what was available to me, but I would have expected HR to know more than me. But there was no further discussion, no opportunities presented to work together. They just let me walk away, taking all my years of experience, outstanding relationships and track record of success in my role with me. What a loss to them! It makes no business sense and no common sense to me.

Well... the other part of it was that right after my mom's mental health crisis, she was diagnosed with bilateral breast cancer and had to have a double mastectomy and go through treatment. So, it was not going to end in the foreseeable future…. In Canada, we have benefits through our employment insurance where a caregiver caring for people who are at a critical stage, (i. e. cancer) can take up to a fifteen-week paid leave of absence… I didn't know anything about it. I had no idea what was available to me…

Selma:  Is this insurance privately sponsored or through the federal government?

Katie:  It's federal.  And my HR department didn't know about a federal program! So, I resigned, and the same manager that said to me, well, don't forget, I'm on vacation, replied and said, “I think you're doing the right thing by taking care of your family.” I took it at face value, but there was a slow burn in my mind, it just didn’t feel right. It took me a full year afterwards of reflecting and learning about working caregivers and what could have been done in my situation to realize how wrong it was that I had to choose between working or caregiver. It never should have happened.

Selma:  If you ran into that employer today, as you look back over that experience, what would be a lesson learned that you would share with that employer, because they lost a valuable contributor to the organization.   

Katie:  It's a good question. I think the one thing is we know anecdotally and from the research that managers and anyone in leadership who has had caregiving experience is often far more receptive and understanding and empathetic to their employees and their staff who also are caregivers. So that lived experience, I think, is huge…. that was one difference between them, as far as personalities go. As far as how it was executed my employer should have known a lot more about how to support their employees who are caregivers. They had a responsibility to work collaboratively with me to find ways to accommodate my caregiving needs while continuing to be employed. We have standards, acts, policies and practices in Canada that are meant to guide this. In the case of my workplace and many others, there are accommodations and supports already available to employees for various reasons, expanding that to caregivers is an easy win.   And I don't think it takes a lot. It's an expansion of language…. I think there's lots of opportunities for organizations to look at their existing policies and their existing accommodations and say, would this be something that's helpful to caregivers? If the answer is yes, add that group, that demographic to the eligibility list…and make sure HR, executive leaders and managers are all aware of how this can look in practice.

Zack:  Let's switch to the employee perspective. What would you tell yourself before your mother had that tragic mental health breakdown? What would you tell that Katie then to prepare for the future, to be ready for this experience?

Katie:  I think it's hard… I think once you become a caregiver, you realize how much you're grasping at straws of control... But I think one thing that I would tell myself would be to inform myself. I didn't have the information that I needed to advocate for myself. If I can connect it to the work that I'm doing right now, what we know in Ontario is that just like in the States, the number of caregivers is going up, is just going to grow exponentially in the coming decade. And we know… at least for Ontario… 67%... are working caregivers… they are in your workplace whether you know it or not, they are there and they are coming.

 We just published a preparedness report for how caregivers can be prepared for what's coming… we pulled not just existing caregivers… but we pulled care people who imagine they're going to be caregivers in the next five years and asked them what are they prepared for, what are they not prepared for? And so many of them said… they're not prepared for the impact that it's going to have on their life. And I translate this into the workplace.  One, we don't have control when caregiving is going to hit… But we can be prepared for it and we can learn how it's going to impact our work and how we can inform ourselves of policies that exist, legislation that exist, how we can see what's already being done in the workplace and know what's available to us and how organizations like ours are connected to these employers to help provide support. That's what's within our control. So, I would tell my younger self to focus on what's within my control and that would be arming myself with the information.

Zack:  Let's close with this. How about some advice that you would give to any working caregiver who's reading this on how to approach their employer, because maybe quitting isn't an option.  

Katie:  I think the first part is embracing vulnerability and being courageous because a lot of the time our caregiving stories can be very intimate and very hard to share. And the first step of it is self-identification. You don't have to use the word caregiver. Some people are sticky around that word, but identifying that you’re supporting other people and that you also need support is basically what it boils down to… If it's something that doesn't come naturally to you, rehearse that conversation. Write your thoughts down, come prepared and organized. It's that emotional piece that can creep up on you when you're sharing such a vulnerable story. I think that's one thing.

I think the other thing is people can come prepared, like I wish I had been, with an awareness of what was available to me, whether in the organization or on a provincial or a federal level. So, you're coming with some potential solutions and suggestions that might work for you. You're presenting a bit of a plan, doing some of the thinking for them. I think that's the best place to start.  I think then, hopefully, from there, it's well received. But also… I guess, the third part would be to know if it's not well received, what other options do you have? Who else can you talk to in your organization? Do you have an HR rep? Do you have a union rep? It might not feel comfortable to go above a manager's head, but when it comes to your wellness and your ability to stay in the workforce, who else can be on that team with you?

Zack and Selma: Katie, thank you so much.