Caregivers Out Loud
28% of Canadians or 1.8 million people, provided care to a family member or friend with a long-term health condition, disability or aging need in the past year. Three-quarters of this group (6.1 million) were employed at the time, accounting for 35% of ALL employed Canadians. More and more people are becoming caregivers and a lot of these caregivers are balancing employment and caregiving.
In today’s episode, we hear from Rachel, who not only witnessed at a young age her mother be a caregiver, but then found herself caring for her Mother in her adult life. Rachel is part of the ‘sandwich generation’, currently raising and nurturing her own child and family, maintaining a full-time job and caregiving for her mother in Ontario. Rachel is an employed caregiver. When we use the term ‘employed caregiver’ we do not mean someone with a formal job as a paid caregiver, but rather someone that manages paid employment and at the same time is responsible for caregiving for a family or friend.
Report Referenced: Vanier Institute of the Family Report, 2017
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When we use the term ‘employed caregiver’, we do not mean someone with a formal job as a paid caregiver, but rather someone that manages paid employment, AND at the same time is responsible for caregiving for a family or friend. Bill
As the visit went on and in the months to come, I noticed more of these out of character things happening and it wasn’t wasn’t just old age and anyone I brought it up with, you know, brushed it off. My mom was struggling too like I think she sort of knew and she would she would try to go and take things to her doctor but she would always come out with just, you know, another prescription for something and never kind of really addressing what was what was going on. Rachel
We use the term sandwich generation, because your mom obviously is your family, but you also have your own family. Bill
Maybe there’s a stroke or caregiver calls in sick and I’m just about to be facilitating a WebEx meeting with 80 people and I need to figure out a replacement because my parents can’t manage without a paid caregiver and these things happen and I, I never know when they’re going to happen. Rachel
Traditionally I’ve had a fear of sharing my personal situation at work. I didn’t see it as professional. I felt my work and personal life needed to be separate and I sort of still do still do in some ways, but I also felt like it was unwise to share at work and there’s lots of reasons for that. But I’m really fortunate. My manager is someone who really understands he’s been through his own family caregiving journey, I can be really honest with him about what’s going on for me and how I’m doing and where my limitations are and I have been able to access the flexibility that I need. Rachel
- Alzheimer Society First Link Dementia Helpline
- Supporting a Family Caregiver (a friend, colleague and/or employee) in the Workplace Webinar
- Work and Care Webinar
- Supporting Employed Caregivers Booklet
- Strategies to Make the Workplace more Caregiver Friendly
- Tips and Tools for Employees (Canadian Hospice Palliative Care Organization)
- Tips and Tools for Employers (Canadian Hospice Palliative Care Organization)
- Work and Caregiving: A Balancing Act (Ontario Caregivers Association)
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- Family Caregivers of BC Website
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In caregiving, we see how caring for multi-generations of a family can shape who one becomes. Our personal past certainly reflects the values we bring to how we enter and proceed as a Caregiver.
In today’s episode, we hear from Rachel, who not only witnessed at a young age her mother be a caregiver, but then found herself caring for her Mother in her adult life. Rachel is part of the ‘sandwich generation’, raising and nurturing her own child and family, and caregiving for her mother, while she maintains a full-time job; meaning she is an employed caregiver. When we use the term ‘employed caregiver’, we do not mean someone with a formal job as a paid caregiver, but rather someone that manages paid employment, AND at the same time is responsible for caregiving for a family or friend. More and more people are becoming caregivers and a lot of these caregivers are balancing employment as well as caregiving.
We start our conversation with Rachel sharing her childhood experiences of caregiving for her grandfather. These early experiences set the stage for her current caregiver role with her mother.
The first thing I thought about was my grandfather. And what came to mind to me was when I was around nine years old, and we so my parents and my two brothers lived in Toronto and Mike my grandfather and this is my mom’s dad live way up in Northern Ontario. He was a widower who had cancer and had a high level of care needs and my parents arranged for him to be moved to a long term care home in Toronto, so that he could be closer to him. At nine years old I was taking the subway and bus about an hour and a quarter to school, and then after school I would often travel another hour to where my grandfather was in this long term care home. And then another hour to get home at night and I would spend time with him there. As he was dying and everything that comes with colon cancer and the body, not working the way we want it to any longer and that’s what’s hard to see. He spoke little English so I often didn’t understand what he was feeling or what he did and he was an adult and I was a kid and some things were obvious like him needing changing and maybe the staff not being available and me, not knowing to advocate and we would just sit and wait together and it was a disconcerting experience in, in many ways, I didn’t feel equipped but there was also never a doubt in my mind that being there was the right thing to do. You know, my grandfather’s declining, and this time we spent with him was a big part of my nine year old experience. But as I kind of thought about that Bill but then I thought about an earlier experience that I think was even more of a pivotal shift for me, so I think about. I think about my mom. I think about when her mom was dying. I was about five or six. I can’t recall exactly but I remember my mom getting the call that she should come down. And she took me with her and I remember being on an overnight train to get way up to Northern Ontario where my grandparents lived and I remember lying with my mom and an upper birth of the train cabin. And she was tear filled and devastated and I remember her saying to her mother was the one person in the world. She knew that really loved her and it’s a different special kind of love she said I would understand when I’m a mother. And, so I actually think but this is sort of where that transition first took place where I shifted sort of just being a kid to playing what I would consider now more, I don’t know, more emotional support, and a higher care kind of way.
That train trip was a growing up experience significant growing up experience for you.
The carer train was literally and figuratively out of the station.
Wow. Yeah and what a lovely way to put that and what an endearing story thanks for, for sharing that. So, then as your life proceeded, and you move then into facing the reality of caregiving responsibilities, entering your life as an adult to talk a little bit about how that transpired then Rachel. As you begin seeing your own mom needing your support and your help.
Now I can remember very clearly when I started to realize that my mom couldn’t do the things that she could always do so easily before and I think it was 2004 My mom was visiting me in North Carolina. She was an interior decorator and helping me with something in my new apartment, we were taking measurements, very straightforward. My mom was really struggling through it all and you know I just didn’t get what was going on at that time because this is something she could do better than any of us with our eyes shut. It was incredibly frustrating at the time. As the visit went on and in the months to come, I noticed more of these out of character things happening and it wasn’t wasn’t just old age and anyone I brought it up with, you know, brushed it off. My mom was struggling too like I think she sort of knew and she would she would try to go and take things to her doctor but she would always come out with just, you know, another prescription for something and never kind of really addressing what was what was going on so it was very it was a very difficult, frustrating, 10 year road till we finally got her an Alzheimer’s diagnosis. so it’s really in this part of my caregiver journey that I first learned how big a role advocating for a family member is within our system of care.
Wow, and that realization has grown over time is that your caregiving started. Talk a little bit about the fact that you in addition to being a caregiver have a full time job.
I really like the work that I do and the work is meaningful to me and how I work with my colleagues and how we impact our clients and the community and it’s all important to me. And we’re a high performing organization and I like to think I contribute in a high performing way as well. But this is where we get to the tricky part. I love my family and I’m committed to making sure they do receive the care they should. I feel like everyone deserves to age with dignity and so when it comes to my parents I feel that in spades.
Yup and we use the term sandwich generation, because your mom obviously is your family, but you also have your own family.
I do, yeah I have a six year old and my husband and there’s, there’s a lot going on and it’s all incredibly fulfilling but it’s also really hard at times. And on the surface, it seems like it should be doable, you know, work. Yeah, and family doesn’t everybody do it, but there are times where it is felt really impossible and completely overwhelming to the point where I can’t sleep or, think and you know think straight. The unpredictability is a huge part so more than my paid work and more than caring for my six year old, there are of course the predictable parts, whether it’s coordinating doctor’s appointments or caregivers or that kind of thing but as my parents age, their needs grow and they often come out of left field. You know, maybe there’s a stroke or caregiver calls in sick and I’m just about to be facilitating a WebEx meeting with 80 people and I need to figure out a replacement because my parents can’t manage without a paid caregiver and these things happen and I, I never know when they’re going to happen.
As well you’re doing this from a distance for your mom.
Yeah I am absolutely doing it from a distance, it’s tricky I’m in Vancouver and my parents live in Toronto and sometimes I can’t be there to actually see what’s happening. I can’t be there to advocate maybe in the same kind of way so you know I’ll be the first to trumpet the wonderful healthcare system we have but there are parts which are rough and whether it’s because the health care systems and providers maybe don’t talk to each other as well as they would ideally, there’s lots of sewing to gather to make sure one provider is speaking to another and the reality is I don’t do it all. I let a lot of things a lot of balls fall and I pick up where I can.
Yup, for sure. So you and your mom and the healthcare system, and your work. I think you’ve got an example of how things can fall apart fairly quickly.
We were in a particularly difficult place so my whole family was involved my mum had broken her collarbone and two vertebrae in her back and my dad had car accident and they were in a place where they really needed to move out of their home their family home but they didn’t want to. And we found them a place to live, then their suddenly the family home was on the market and and then suddenly there was a short closing and there was a lifetime of belongings to deal with and there was a surgery happening for my mom and it was a very stressful time. It was a very emotionally charged time. I, you know, at the time wasn’t giving anything to my little one, and I was making all kinds of mistakes at work, and I was letting my colleagues down and I can tell you even 18 months later we’re still trying to recover from this so it’s difficult. It can be difficult.
And you’ve also spoken about your friends. Some support there?
Yeah, my friends wow I think about two friends of my, my mum’s Marjorie and Stella are two longtime friends of mine Natalia and Kate and I greatly dislike asking for help. These four friends have given so selflessly to me. They were in the trenches with me and like they were physically showing up. I told you we had this whole house a lifetime, my mom being an interior decorator with a collector of antiques and all kinds of things that were so meaningful for her. Trying to figure out, you know what what we could do with these things and they were right there on my side, you know, get their hands dirty and trying to help me make some of those decisions and sort through it. Anyway all kinds of different things they did that I just never expected.
Yeah and good for you to accept them. Sometimes it’s hard to say you know I appreciate and I needed that and I didn’t even know it. In all of that, you’re going to work everyday. You’ve got some full time responsibilities. Talk a little bit about your experience there and how you have begun to utilize what resources are available to you at work.
Yeah, I would say the first thing that pops to mind and this is a really bright spot is my manager. Traditionally I’ve had a fear of sharing my personal situation at work I didn’t see it as professional. I felt my work and personal life needed to be separate and I sort of still do still do in some ways, but I also felt like it was unwise to share at work and there’s lots of reasons for that. But I’m really fortunate. My manager is someone who really understands he’s been through his own family caregiving journey, I can be really honest with him about what’s going on for me and how I’m doing and where my limitations are and I have been able to access the flexibility that I, I need I mean I can’t tell you how grateful I am for that, but I also just want to say that that comes with a lot of guilt because I know that many of my colleagues. We’ve got a lot of frontline workers who are working directly with clients and they don’t have access to that level of flexibility that I do.
And you began to encounter some other resources then too.
Yes there’s other, a few other resources I love to point out I mean one is the Alzheimer society they have this first link Dementia Helpline program and like lots of programs they provide information and guidance and all that great stuff. What I wanted to point out there was that there was a social worker, Rebecca, who had called me as part of this, you know the back and forth we had and just wanted to check in with how I was doing and like she just sort of stopped me in my tracks like whatever I was saying or trying to inquire about or program for my mom or whatever and she just wanted to stop and ask me about me and how I was doing. And I recall just kind of welling up and trying to contain my tears and it’s always been about running hard and trying to find the best supports for my parents and it didn’t occur to me that someone might stop and ask me about me in this time. Anyway, she’s not there anymore but I will never forget her. That’s sort of one amazing resource is Alzheimer society. We have as a large organization like many, we have a great employee assistance program and there’s all kinds of resources in there. They’re often they’re often buried in there and it can be a bit of a bear to try to tease through them and find what is helpful for me at any particular point in time. There was a working carers program which was like a support group that was incredibly helpful for sharing it you know I didn’t even realize that I felt alone until I started hearing the experiences of others in the group. The one other resource which is really kind of been unique and interesting for me and maybe even more powerful than, then you know anything in our employee assistance program. It’s been an internal group and it’s a group of employees that within our company from across the country who are employees and they’re also family caregivers. So similar to me we all have our own situations. It’s helpful for us and we’re hopefully helping the organization and employees but it’s also on a, certainly on my own personal journey, being able to play an active role and making it better hopefully for others, it’s a very satisfying helpful part I think of my own journey. It fills the bucket in a unique way.
What a great way to say that. What else can you say about what you’ve learned in this caregiver role as a full time employee.
Well, one thing that, me realizing that I’m a caregiver. I never identified with that term. I think you could have splashed as much media resources at me. When I think of that term I really do think of the person who’s a paid PSW or paid in some way to do this as a job and so it’s been really helpful to me that I’ve come to realize that, that’s me. I am a family caregiver as well and that’s been really helpful. What I’ve also come to realize is there are tons of resources. But I, I, and I don’t think I’m alone I really struggle often with how do I make time and mental space and whatever I need to actually sift through those and kind of match them up with what I need when I need it and I feel like that’s still a big gap, but I feel like, you know, first step of the journey I guess is understanding that that’s something that I’m struggling with. And you know even FCBC you know the Family Caregivers of BC, I have known the organization for the last five years and have I reached out to leverage the resources there. It’s really easy to tell people there are resources available but it’s also hard to make that connection or close the gap when the person and the caregiver actually needs it.
Rachel’s candid and heartfelt words bear witness to the importance, even the necessity, of ongoing support for one’s self. Pressed with her responsibility as a full-time employee AND caregiving for her parents from a distance, Rachel speaks from experience about reaching out and finding her own support at work and elsewhere.
So many caregivers experience the same personal fatigue and stress, and the need for support and self-care. In the midst of one’s caregiving challenges, comes the still small voice, an awareness of need for self-empathy and compassion. Rachel’s caregiving has enabled her to see her own life and that of her family, in a wider and more compassionate context.
No matter what stage of caregiving you are at, you can choose the support from Family Caregivers of BC that best works for your capacity. Ask your questions by calling our BC Caregiver Call Line, share your thoughts in our Caregiver Support groups, and grow as a caregiver from our Caregiver coaching. And as an employed caregiver, you may need to learn whenever you have time in your busy schedule. Go online to our Caregiver Learning Center; full of articles, blogs, webinars, and the full list of episodes from this podcast. Get your personalized support at www.familycaregiversbc.ca.
I guess I’ve learned a lot about myself on the way and I’ve also needed to let go of certain ideas I had about my even about my career. I’m in a place where I’m kind of reimagining what the future can look like and sometimes it’s hard to let go of an old vision. I’ve gotten a lot clearer about, I don’t want to see where my priorities, but whether it’s my values or my family or whatever it is but I’ve gotten a lot clearer around boundaries. Boundaries setting for myself to make sure that I can be the best I can for my six year old and my husband and my parents and friends and community and trying to achieve what that sense of balance is for me at this point in time and I don’t know and how that will need to evolve.