Caregivers Out Loud
When was the last time you felt truly rested? For caregivers, making time for self-care can feel almost impossible with all the other demands on your time. And yet, it is an essential skill to learn in your role as a caregiver. In our final episode of the season, we look to why self-care is a fundamental part of being a caregiver. As a caregiver, you are often willing to make sacrifices and feel a sense of commitment. However, without self-care, how can you sustain caring for your family or friend and not run the risk of burning out?
Highlights
- 2:38 How to find balance and have boundaries to fit your life.
- The reality of the burden of caregiving impacting other relationships.
- Why it’s a myth that enough self care will offset how much energy caregiving takes.
- 5:37 The importance of filling up a caregiver’s own gas tank.
- Having the ability to see and hear yourself and show yourself some compassion.
- How 92% of caregivers find caregiving rewarding, but that there are high levels of distress.
- 12:35 The difference between running a marathon and a sprint in caregiving.
- The importance of being together versus the tasks of doing things.
- How deciding that your own well being is important to accept self care.
- Why laughter creates resilient caregivers.
- 18:13 Learn about the elements of caregiving.
- How knowing about anticipatory grief is a proactive step in caregiving.
- The difficulty of juggling what to do now versus letting go of tasks.
- How care giving is one of the biggest social phenomenons in our society.
- Caregiver needs are not the same, but there are common elements.
Quotes
“Self care at its basis is being able to see and hear yourself and show yourself some compassion for how difficult it is.” – Jodie
“Your self care can be absolutely on point and you can still sometimes feel overwhelmed. That’s just part of caregiving sometimes.” – Jodie
“You don’t ever imagine that it’s going to be like this. And yet, it can get so much better. It’s accepting what’s there every day and finding ease in it.” – Deanna
“If I were to look back and think about caregiving, it would be to really understand the feelings and emotions that you are going to go through no matter what, at different times than other people, and to learn about them. That’s one tremendous gift that you could give yourself as a caregiver.” – Barb
“The tasks will always be there but the person won’t.” – Barb
“It can save your life. It can be your lifeline. It can be that piece that just keeps you able to do this important life work for the person or people that need the care.” – Deanna on asking caregivers to reach out to get support
Links Mentioned In the Episode
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Transcript
Barb
So self care? It’s a tricky one. Because it is so much easier to say than it is to do. We have all the strategies in the world. Stay active, eat well. Get good sleep. Very hard to do when you barely have enough time to go to work, get home, prepare meals, run for medication, go over to dad’s house, make sure that the fridge is full, check on meals, check on dad, get him into bed. It’s very, very difficult at those times. So part of our awareness and our learning strategies is to help a caregiver make the distinction of when you’re running a marathon versus a sprint. It’s about perspective and learning, the impact of sustained stress on your body and your well being.
Intro
You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Jodie McDonald.
Jodie
How are you feeling? Right now? When was the last time you felt truly rested? For caregivers, making time for self-care can feel almost impossible with all the other demands on your time. And yet, it is an essential skill to learn in your role as a caregiver. In our final episode of the season, we look to why self-care is a fundamental part of being a caregiver. As a caregiver, you are often willing to make sacrifices and feel a sense of commitment. However, without self-care, how can you sustain caring for your family or friend and not run the risk of burning out?
Deanna
My name is Deanna Roozendaal, and I’m an only child, I’m caring for both my parents who are in their 80s. They split up when I was a youngster and they both don’t have partners. I’ve been caring for them both separately for about three years now. My mom, I was pretty sure that she had dementia. She wasn’t actually diagnosed until six months ago and had moved into a long term care center from the hospital. And my dad has a diagnosis of vascular dementia. And he has bipolar and has diabetes and a stroke as well. So there’s quite a few things going on for him and he remains in hospital and in the process of determining his placement where he will live. So yeah, it’s been especially a busy time with both parents, with both parents in the hospital. Long introduction there. (laughter)
Jodie
So that’s a lot.
Deanna
Yes, no shortage of words. (laughter) When I speak to the caregiver support line, they were always really supportive that it’s not that you have to, that I have to be everything in the same way to both of them. The self care that’s necessary and the boundaries. I’ve been so thankful to have that encouragement to have those boundaries. Because I think, had I not been speaking to people, a professional about that. I would’ve thought that no, I just have to, I have to put everything on the table for both of them no matter what because this is what the power of attorney document says for both. This is what the health representation document says for both, it says I have to do all this. And I was so thankful to have the encouragement to say, stop, that this is not working. You may want to completely take yourself out of this. And I certainly tried that at times to just remove myself. And then I’ve also been trying how much can I give to some part of my dad’s caregiving, but still take care of myself at the same time. So a bit of the cold turkey approach and then that just didn’t work. And then it’s okay no, how can I find balance? And where can those boundaries be that fit for me for that system and for my dad.
Jodie
Can you speak to how your role as a caregiver for the last three years has impacted the other relationships in your life?
Deanna
(sigh) That, that one makes me feel emotional.
Jodie
Yeah that was a big sigh Deanna.
Deanna
Yeah. It’s really really hard. It’s really really hard because there’s just no energy for anything. It feels to me like the parts of my, of my life and my relationships that I enjoy, I just don’t have the energy for. You know the people in my life who care about me they understand that but, but it feels like it’s there for me is how long can I sort of short change the people in my life that are not you know, it’s triage. Who absolutely needs my care and attention today and the people that I love that really don’t need it, aren’t getting it in the way that I want to be giving it to them. And that’s really hard. And I have really understanding friends and I have a wonderful supportive husband, but I just hope that there’s going to be more time for me to, to be living my life more with them than I am in the caregiving role. It’s, it’s hard. Yes, it’s hard.
Jodie
I really appreciate that honesty, because again, we’re sometimes afraid to talk about the reality of the burden that comes with caregiving. There’s a myth that you can somehow provide yourself with enough self care to offset how much energy caregiving takes and I don’t think that’s true. I don’t think that’s true.
Deanna
And I agree, because I actually feel like I’m an expert in self care. Because I had cancer in 2011. And I’ve had a couple of incidents tense and fortunately the wonderful thing that cancer brought into my life was the need for self care. The need to look after your body through nutrition through exercise. I meditate, I do yoga, I listen to music, I go for walks in nature, I do so many good things for myself. Those things help. They really, really help. But the caregiving is, it is about resilience, and it’s about not depleting yourself. Self care gives back. It puts the energy back in the tank. It’s like the universe gives you too many things that are depleting you at once. If you could somehow spread things out, and you know interspersed the bits of self care in between. But there’s times when it just feels so impossible to give yourself that bit of self care because of the level of crisis and demand that is needed for the people. They just needed more than you do at the time and you push your self-needs off. But the feeling that that is a slow diminishment of your resilience and the tank getting just that little bit less full all the time and then not having the time to go to the gas station to fill it up.
Jodie
Yeah, I think that’s a great metaphor.
In caregiver support a lot of the time when we talk to caregivers about self care, it’s often met with a bit of an eye roll or a frustration because I think it does often feel like oh, all this and self care too, like it’s just one more thing I have to do. And I feel like it’s important to recognize that self care at its basis is being able to see and hear yourself and show yourself some compassion for how difficult it is.
Deanna
You don’t ever imagine that it’s going to be like this. And yet, it can get so much better, but it could also get so much worse. You know in the worst moment there’s that too, but it’s like wow, actually I’m healthy at the moment, my husband’s healthy at the moment, how hard would this be if we weren’t healthy and trying to be the caregivers as well? You just don’t know what’s around the corner and that’s always hard. That’s acceptance, from my mindfulness class. It’s accepting what’s there every day and finding ease in it.
Jodie
I really appreciate that the message that you’re offering here, which is that your self care can be absolutely on point and you can still sometimes feel overwhelmed, That’s just part of caregiving sometimes. So a few years ago, there was a report on caregivers that Isobel Mackenzie, the Seniors Advocate for BC did and in that report, there are really high levels of caregiver distress and particularly in BC. But there are also 92% of caregivers in that report said that they found caregiving rewarding. So it’s an interesting thing, how distress and a sense of satisfaction or the importance of being a caregiver, like you said, you know, I’m committed to the caregiving even though you know, that there’s a certain amount of distress in it.
Deanna
Yeah. The reward in it, is a blessing. It will feel like a curse as well because I realized that so much of my life now centers around it. I so often have a wonderful visit with my mom. It feels rewarding and I feel like I can say, I’m having these wonderful moments that always cherish after my mom is gone. But the sad side of it and I shouldn’t call it a curse but it feels like the sad side is that I also know that so much of my life is centered around this now that when my mom is gone especially and when my dad is gone as well that there will be a massive gap. And it is to figure out who I am then not as a caregiver. And to fill that again with something that feels rewarding. There will be a very hard time after it ends as well to figure out who you are without the caregiving and fill it with things that feel rewarding and feel like they’re you. And I think there’s going to be a sense that real loss of the people who care for but also of yourself and who are you when that roll is out of your life. It has filled so much.
Jodie
Part of self care while caregiving is to find a strong sense of self, that you are not JUST a caregiver; that you are still whole and that you have the capacity to sustain being a caregiver for the long run. Most of us are able to go fast from time to time, sprinting from one task to the next. But what if you have to run a marathon instead? And then run another one the week after, and the week after that, and every single week thereafter? Chances are, as a caregiver, you are running a marathon not a sprint. But this marathon wasn’t something you signed up for or could train for. So what can we learn now to sustain ourselves over the long run? A couple episodes ago, we heard from the Executive Director of Family Caregivers of BC, Barb Maclean. As well as having so much professional experience helping caregivers, she was also a caregiver herself.
Barb
My mom was diagnosed with cancer and she died probably just six months later. So it was a very quick experience. But the most powerful thing, aside from childbirth I’ve ever gone through. What I reflect on during that time was the sheer power of our family and our friends and the circle of support around us. And at the time, I had a baby. I was returning to work. And I worked in a family caregiver support setting and it was the best place to work on Earth at the time, and it was still incredibly difficult. Even given what I know, I had to learn to let go, ask for help, figure out what’s important, not important, and those things change when you have such a limited time in front of you.
Jodie
So I imagine that your personal experience as a caregiver has informed your work with Family Caregivers of British Columbia.
Barb
The number one thing would be about how much it hits you in the heart. You’re not being logical some of the time. You’re wrapped up in emotion. Especially if you have other competing demands like a baby or a child and trying to, I mean I was supposed to come back to work and I did. Wow. Right at the same time, my mom was diagnosed. What a juggle. It was, it was so so difficult. Even though I knew the system, how to make that work for my mom and my family, and being able to see it through new eyes of it isn’t a job, it’s my life. Now when I talked to caregivers, I feel the preciousness of each moment they might have but they don’t know it.
Jodie
Understanding the sprint versus the marathon is the idea of also putting your own self, your own emotional needs, your own experience, and the meaning you’re making of the caregiving experience on the map as part of, you know, what we call the caregiving journey. To just sort of also write yourself into the narrative. And it’s really hard sometimes to do that when we’re really caught up in making sure that the person that we’re caring for that their experience, is as good as it can be.
Barb
If I were to look back and think about one of the most precious lessons I learned about my mom dying from cancer and being an employed caregiver, juggling that baby, is that being together is way more important than the tasks of doing things. And if I had a choice, looking back to get somebody to help with tasks and spend time with my mom. That would be my choice and it wasn’t always my choice then, there were so many tasks. You don’t always see that, in the moment. Because you cannot be running a marathon and a sprint and sustain your own well being is just not possible.
Jodie
So what advice would you have for other caregivers about how to look after themselves?
Barb
Self Care is an individualistic thing. There is no one right answer for me or for you or for anyone else. The intention to put yourself in the mix and say I am important is the critical thing, from my perspective. Once you decide that your own well being is important, everything else follows from that. Unless you have that realization and belief about yourself, you’re probably not going to do it. So how important are you in the scheme of things?
Jodie
As a caregiver.
Barb
As a caregiver. It’s more than just taking time for yourself and there comes the eye roll. Yeah, yeah, yes, it’s the most common eye roll in caregiving circles is the eye roll of you should care for yourself. And yet, it is one of the most powerful things you can do to be a good caregiver over the long term. To sustain your energy and your sense of commitment, without falling into anger, resentment, grief, guilt. Exercise, get some sleep, do fun things. Those are sustaining and good things for yourself.
Jodie
Is there something that you wish someone had said to you or told you at the beginning of your caregiver experience?
Barb
What I wanted is completely unrealistic. I wanted to know what was going to happen with my mom and her cancer. Nobody could tell me that. That was my biggest wish. So I spent a lot of time and energy trying to figure out cures and hopefulness. And looking back, I don’t know that there is a crystal ball. I couldn’t trade it that was saying, well, instead of spending all my time researching, maybe I could have done something with my mom. But there was no crystal ball. So I don’t know that there’s anything in terms of being prepared for anything. It’s just, I think about making sure no matter what that you spend time, if you love somebody, do not let the day to day things that will always be there get in the way of your relationship and spending meaningful time together.
Jodie
I mean obviously you’re speaking of a situation where someone has a cancer diagnosis, we talk a lot about with caregivers who are caring for someone with dementia and many times those caregiving journeys are quite long. And maybe longer than the person ever would have anticipated at the beginning. One of the things you’ve talked about is how often the journey changes for caregivers. Even if you think you have a sense of how things are going to unfold, it’s probably not going to be like that, in reality.
Barb
And with so many diseases, dementia, other chronic long term disease, you are slowly watching the person that you once knew one way to become different. They are different. What isn’t different is your hope for the best for them. Understanding the disease or the condition as best you can and deciding to meet life full on and enjoy differently. You’re not going to change that person’s disease trajectory, but what you can change is how you view it and take the opportunity to shift over time and so how you enjoy that person’s company is going to be completely different than it once was. And maybe laughing along the way. I see that laughter is what some of the most resilient caregivers I’ve ever seen in the face of horrifying disease and disability. They find a window of positivity, they can laugh. They’ve changed their perspective on how they’re going to live their lives and they’re going to enjoy it to the last minute regardless and I totally admire that. Learned a lot from people that have that ability.
Jodie
Yes. Yeah. And also support groups or a formal caregiver support can help is in helping caregivers to understand anticipatory grief. That while the person is still there, and maybe their prognosis is not dire or urgent, but the loss and the sense of grieving catches us at many different times along the way because that person is changing and our relationship with them is changing. So the idea of grieving while a person is still with us, can be a tough one until we really understand how normal and necessary that process is and to have language around it is really important too.
Barb
Learning about the elements of caregiving, like anticipatory grief, learning about the dynamics of guilt. Learning, learning. Learning about those things is one reason why we have an education program. The more you understand it, the more you can deal with it effectively. So if you don’t know anything about anticipatory grief, and it hits you, you might feel like you just don’t know what’s going on. But if you can put a label on it, and you’re talking around a support group table and other people know what this is, you can deal with it in such a more proactive way. So if we circle back to, if I were to look back and think about caregiving, it would be to really understand the feelings and emotions that you are going to go through no matter what, at different times than other people, and to learn about them. That’s one tremendous gift that you could give yourself as a caregiver. So dig in.
Jodie
What do you think at that time of your life was the hardest thing about caregiving for you?
Barb
The hardest thing was watching a baby grow and a mother die. That was the hardest. I was dealing with grief and loss at the same time as a second hardest thing was juggling time and not disappointing everybody and especially my little girl and then my family. Trying to also work full time because I had been off on maternity leave for an entire year and just at that time, I was coming back to work. I had the most supportive workplace I can ever imagine. My team, everybody around me said, do what you need to do, but it was me who really struggled with well, how do I know what the most important thing to do is today, I’ve never watched anybody die before. And I didn’t know my mom was going to die. So I was sprinting and marathoning at the same time and I figure I’m going to do this because I can. The difficulty of constantly examining, am I do, I could be doing more. How do I do this and do it all well, and letting go of some things. And I was very, very, very lucky that I had a circle of support around me. I had my family, I had friends, and I had work. Not everybody has that in place. Again, looking back on if there’s one thing that was my strongest desire, my wish for other people, it’s spend time with the person you love, you’ll never get it back. And I don’t mean by doing tasks, I mean being with. The tasks will always be there but the person won’t. So if you take a moment of reflection that is for me the or desire that I could ever hope for someone else.
Jodie
And would you say that was the most rewarding thing that you did at that time was to have that awareness? Was to know that sometimes you could put the task aside and just be present.
Barb
Absolutely. Absolutely. There were times when my daughter, who was just barely walking at the time, laying on the hospital bed with my mom, and not caring about any other thing than that moment of just being together and having that time. I look back on that and there were a million other things to do, I probably should have been in a meeting and I wasn’t. That was one of the most beautiful memories I have.
Jodie
So as the Executive Director of Family Caregivers of BC, one of the themes that I love or the sayings there, is the idea that as Family Caregivers of BC you want caregivers to be identified and to be connected and to be valued. Is that right?
Barb
One of the most important things with Family Caregivers of BC is that in society caregivers are valued and identified and supported as partners in care. The realization from a society I mean, I, we’re not ready for this. Most of us don’t understand that we are facing one of the biggest social phenomenons that our society’s ever seen and that is care giving. And to label it, know it, see it, and have it valued. That can, that’s a game changer.
Jodie
As the head of this organization, the provincial organization, designing, offering, always evolving services for caregivers, what do you want caregivers to know about Family Caregivers of BC and how it can help them?
Barb
We want family caregivers to know that we’re here for you and with you. And as needs change over time, we want to be responsive with arms wide open saying, what do you need and we are going to do our very best to create those services and supports that meet your needs over time. And we’re celebrating 30 years this year. We were the first organization of its kind in Canada and that’s quite a legacy. And knowing that there’s 30 years of research as well, that understand that caregivers needs are not all the same. But there are some real common elements that there’s the emotional support, you need to learn stuff, and that you’re in the company of others who understand what you’re going through. And to avail yourself of all of those things over time is going to make you a stronger caregiver, a healthier caregiver. And that’s why we exist. We’re 100% there for you as a caregiver.
Jodie
Barb and Deanna have similar messages about self-care; doing everything on your own can feel very isolating. It helps having someone to talk to.
Deanna
I want caregivers to know that they’re not alone. That they’re not alone. And the professional support. The different ways that the professional support can direct you in directions and connect you with others who are in the same situation as you. It can save your life. It can be your lifeline. It can be that piece that just keeps you able to do this important life work for the person or people that need the care. I’d like the caregivers to reach out as early as possible and before the crisis. At a time when it feels it may feel like the last thing that the energy to do is to make the phone call or to sign up for this three hour workshop. I felt that way. I felt like I can’t. I can’t do it. I can’t. It’s three hours, once a week for eight weeks, I can’t. And yet I feel like had I not done that course, I would not have survived through this time. I would have gone flat myself. But I had so much information. And it’s not that you take it in, it’s that you just know it’s there. And that you know that the people are there to help you and you have just this little inkling that there’s something you can do in this. Rather than feeling absolutely powerless and unable to know one single thing that can help. But it’s gonna make the difference. So reach out caregivers, please, please reach out as early as possible. And even if you have five minutes, reach out.
Jodie
Deanna and Barb both struggled to find balance between their role as caregiver and finding time for self-care. This is one of the most common challenges for caregivers. If you struggle with making time for self-care, you are not alone. But as Deanna and Barb discovered, it’s an essential skill to learn. Remember, caregiving is a marathon, not a sprint, and you will need nourishment to sustain you along the way. Talking to others is an act of self-care. Reaching out for support can help you find time to care for yourself, and your relationships outside of your caregiving role. Call the Family Caregivers support line, toll-free in BC at 1-877-520-3267.
Finally, as this is our last episode of our first season, we want to thank you for listening. We’ll be back soon with a whole new season. We hope that listening to this podcast has given you a fresh perspective and renewed sense of meaning for caregiving. And if it has, it would mean a lot if you shared this podcast with family or friends, that you feel needs to hear these stories too. In the meantime, breathe in and breathe out. Know that you have a community and someone here to help at Family Caregivers of BC.
Outro
Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and produced in partnership with the BC Ministry of Health – Patients as Partners Initiative. Hosted by Jodie McDonald. Produced and sound edited by Organized Sound Productions.
If you like what you’re hearing, discover more episodes, and find more caregiving resources at www.familycaregiversbc.ca. Thank you for listening and taking the time to learn and care for yourself with other caregivers out loud.