April 11, 2023 | Hosted by Leanne Kaufman
Tips to deal with the challenges and uncertainty of caregiving
"One thing that always strikes me is that there are studies done that suggest that caregivers have a comparable level of post-traumatic stress disorder to military veterans who return from battle."
Intro Speaker:
Hello, and welcome to Matters Beyond Wealth with your host, Leanne Kaufman, president and CEO of RBC Royal Trust. For most of us, talking about subjects like aging, late life, and estate planning isn’t easy. That’s why we’re going to help get the conversation started on this podcast while benefiting from the insights and expertise of some of the country’s top experts. We want to bring you information today that will help to protect you and your family in the future. Now, here’s your host, Leanne.
Leanne Kaufman:
Did you know that one in four Canadians over the age of 15 cares for a family member or a friend with a long-term health condition, a physical or mental disability, or age-related challenges? With so much of our population taking on the responsibility of being a caregiver to a loved one, today we’re going to turn the lens to the caregiver, and touch on strategies they can use to take care of themselves and avoid burnout.
Hello, I’m Leanne Kaufman, and welcome to RBC Wealth Management Canada’s Matters Beyond Wealth. My guest today is Dr. Naomi Gryfe Saperia. She is a clinical and health psychologist in Ontario, with experience working in hospitals and private practice helping patients and families navigate the complexities of living with illness and disability. Naomi is published in multiple medical and psychological journals and combines her professional expertise with her lived experience as a caregiver to advise hospitals, regional and provincial health care related communities. She also teaches medical trainees on how to effectively communicate with patients and families, as well as teaching patients and families themselves how to advocate for their own needs. Her current clinical practice focuses on the mental health and well-being of those caring for a loved one with an illness or disability.
Naomi, thanks for being here with me today to discuss caring for our caregivers and why this matters beyond wealth.
Dr. Naomi Gryfe Saperia:
Thank you so much for having me.
Why don’t we start by having you tell us a little more about your background beyond what I’ve just said and the kind of work that you do?
Of course. As you mentioned, Leanne, I am a registered clinical and health psychologist here in Ontario. As a psychologist, I’ve worked in hospitals and private practice, treating people who’ve been struggling with a range of mental health issues, or those coping with the emotional toll of having really a medical condition or disability. Most recently, I work in private practice and I dedicate my time specifically to supporting the mental health of family caregivers. When I can, I teach medical professionals about how to work together with families.
I came to this work both through my professional practice, but also as you mentioned, through my own lived experience. For five years, I navigated the pediatric healthcare system for my daughter who was born with significant medical complexity and fragility. I spent my days advocating for her care, having beyond difficult conversations, and sometimes they even involve life or death decisions and taking on so much of her medical management at home. I came to see firsthand how little support there was for caregivers navigating this difficult path. Besides my own experience of being so infrequently asked how I was doing, I also met other caregivers who were so desperate for a break or feeling guilty and sad and anxious or burnt out, and they had nowhere to turn to for help. So now I’ve really dedicated my practice to try to fill that void and help caregivers alleviate some of that really unnecessary suffering that comes along with caring for a loved one with illness.
I’m very sorry to hear about your own experience. Your ability to turn it into something to help others is very admirable. Although I started off the top by saying that a quarter of Canadians are caregivers, I’m not sure that all people who are caregivers necessarily identify themselves as such. So in your practice, do most people self-identify when they are a caregiver for a family member and think of themselves in the context of this circle?
Well, I would say, by the time people are seeing me, they are already identifying as a caregiver. But that said, in the general population, I think that there are lots of people who hesitate to really call themselves caregivers, and that could be for a number of reasons. First of all, I think that what people think of as a caregiver differs. Not everyone has the same definition in their mind. Some people think in order to be a caregiver, you have to be caring for someone who is seriously ill. I would argue that actually if you’re just providing care to a loved one, you’re a caregiver in any capacity. Right?
Mm-hmm.
I think some people are hesitant to say that they’re a caregiver unless they think it’s really quite, quite a serious condition. I think others are hesitant because there is a fear of admitting that you’re a caregiver if it means that your loved one is ill or incapacitated in some way. Coming to terms with that or acknowledging that can be really difficult for some. For me, by the time people see me, again, you are identifying as a caregiver, but I think what people struggle with, with that identification is a hesitancy to say or talk about how difficult that role can be. So even if you say, “Yes, I’m a caregiver,” you may not be asking for support or help. Something I hear so often is, “Well, I just have to do it. What other choice do I have?” Right?
Right.
So people don’t necessarily admit to the idea that it’s hard. It’s hard. If you do identify as one, it can be really a tough role to play.
And some guilt may be associated with admitting that it’s creating stress and a problem in your own life.
For sure. For sure! Caregiver guilt is a huge issue and one that I see present to me all the time.
What are some of the other common struggles that you see caregivers present with when they come to talk to you?
Well, I think that the biggest overarching struggle is this idea of burnout and why we’re here talking about it today. What I mean by burnout is sort of that psychological, emotional, physical exhaustion of caring for somebody with a significant illness or disability. But that comes from the struggles that come up every single day. So if we break down those struggles, I would say there’s struggles in advocating for your loved one within the healthcare system that we find ourselves in. There are struggles of constantly feeling like you’re giving of yourself to others and difficulties with setting boundaries to ensure that you can still live your own life. There’s struggles with feeling overwhelmed and anxious about the tasks that need to get done or managing the relationships that come with caregiving, because there are a number of those too.
Many people also struggle, like you said, with those feelings of guilt or even feelings of loss too. There’s a lot of loss that comes with caregiving. These are struggles that really accumulate over time and they lead to stress, fatigue, burnout. Actually, one thing that always strikes me is that there are studies done that suggest that caregivers have a comparable level of post-traumatic stress disorder to military veterans who return from battle.
Wow.
It’s those constant… Yeah, I mean that, to me, is so striking. The struggles are real. They’re significant and they’re daily and they build up over time.
Yeah, I think sometimes it’s just hearing from someone like you that it’s okay to feel like this might be part of the journey of helping to get help. A lot of us are helping to care for aging family members while still raising kids of our own. How often do you see being part of that, what’s always called the sandwich generation, play into this burnout or sense of overwhelmed-ness?
I think it’s such an important point you raise because the truth is with the advances of medical technology people are living longer, and couples are having children much later too with the help of medicine. So people are finding themselves more and more in this sandwich generation. If you think about it, I mean what’s happening is you’re basically being placed in a double caregiving role, which means that the demands on your time, on your emotional energy, on your resources are all doubled. And yet, while all that doubles, you’re still only one person, there’s still only 24 hours in a day, there’s still only seven days in a week. So your demands are being doubled, but you can’t double that time.
If being overwhelmed leads to stress, as I mentioned before, then that’s really doubled for this sandwich generation. Caregivers who I speak to in that situation have often expressed feelings of burnout or feeling depleted. One thing I hear in particular, like you mentioned before, those feelings of guilt. If you’re giving to a caregiving task in one area, then you feel like it’s at the expense of the other. So that’s really hard for that sandwich generations.
What are some of those strategies you recommend to people that you’re speaking to that are getting overwhelmed by the responsibilities of caregiving in addition to their everyday lives?
Yeah, sure. I think that’s such a really important question. There are a number of things that caregivers can do to help feel less overwhelmed, but I do want to say this with a caveat because the way I say them is probably going to come across as them being easy, and I know that they’re not. Also, there isn’t a one-size-fits-all solution here. What might work for one may not work for all, but I do want to offer these to you and maybe see as a listener what resonates with you.
Firstly, if you are afforded the luxury, have conversations with loved ones early about their wishes and their desires, because often stress comes with making big decisions, and knowing what your loved one wanted really helps with the pressure and guilt that so often comes with making these types of decisions.
Second, if you can, mobilize and leverage your strengths. So what do I mean by that? We all have things that we’re good at that energize or that excite us. If you can identify those strengths and weed them into your caregiving tasks, you’re going to feel less depleted by the tasks at hand and more fulfilled, which actually leads you to be less overwhelmed. For example, if you’re a musician and you play an instrument and that energizes you, you can play for your loved one when you’re going on visits. My point is to find things that you can do that also bring you joy in that task.
Another thing, but this is really hard for people, is to work to set boundaries. Nobody can do everything on their own. If you think about supports that you have that maybe help you share the load, I would really encourage you to use them. Tied to boundaries, it’s this idea of being kind and compassionate to yourself, too. We’re always harder on ourselves than we are on others. So one thing I tell people, just ask yourself, “What would I say to a friend in this situation?” Because chances are, it’s a much kinder response than what you’re affording to yourself. If you’re really struggling and feeling completely overwhelmed, then I really encourage people to seek support. In my opinion, seeking support will only help position you to better support your loved one. It’s not a weakness, and it’ll help you to just navigate your journey with a little lighter load.
Yeah, great tips. As you said, some of them will resonate more than others, but all things that we need to bear in mind because we’re all caregivers in one form or another at some point in our lives.
Absolutely. Exactly. We all have different definitions, right? In some way, you’re right, almost everyone is a caregiver.
Mm-hmm. What are you seeing people who you would say are thriving as caregivers, doing well? And maybe you’re not seeing them thriving because of the nature of when you enter the relationship with them, but maybe through the course of your journey together, you see them start to thrive. Is there anything different than what you’ve already told us about some of those strategies?
Yeah. I actually hope that I do see them thrive by the end of our work together. I love the premise of your question because it means people have the ability to do that, and I do think that people do. Even in my own personal journey, I saw caregivers who were really strong and really got through the journey so well.
I read a quote recently by a psychologist by the name of Dr. Megan Devine, and she said that some things in life can’t be fixed, they can only be carried. I think that it really spoke to me because I think when I think of caregivers who really thrive, they can see that while they can’t necessarily change the circumstances, they can take measures to sort of manage that load. They do engage in more of that self-compassion, less blame, less shame, really. They create boundaries on what they need to achieve their goals and use their values to guide them. I would say also most importantly, [they] are open to asking for help, because a big thing is, we can’t do it on our own, even though sometimes we feel like we should.
If you could hope that listeners would just remember even one thing from our conversation today, what would that one thing be?
Yeah, it’s a hard question, but I think when talking about caregivers, a lot of people use the term resilience or this idea that people can bounce back from adversity. Resiliency is so interesting to me because it’s not a skill that you’re necessarily born with—although of course some of us have more of a predisposition to it—but it’s a process that can be taught. And I think what I would want to leave listeners with is that I know caregiving is so hard and comes with so much uncertainty and challenges, but with the right things in place, we all have the capacity to be resilient. There can be beauty and meaning and purpose in caring for your loved one. You all have those unique strengths that can be harnessed to help you weather whatever storm comes your way. And I hope you have the self-compassion to recognize that. But if you need help finding it, to reach out to me or another health care professional. And in the meantime, I suppose I’m sending all of the listeners just much strength in their journey.
Well, thank you, Naomi. It was such a powerful conversation, and I really appreciate you joining us to talk about caring for our caregivers and why this matters beyond wealth.
Thank you so much for having me. It was really my pleasure to be here.
You can find out more about Dr. Naomi Gryfe Saperia at gryfesaperiapsych.com. If you enjoyed this episode and you’d like to help support the podcast, please share it with others, post about it on social media, or leave a rating and review. Until next time, I’m Leanne Kaufman. Thank you for joining us.
Outro speaker:
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