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Episode 26: Secondary Caregivers Relieving Primary Caregivers Through Circles of Care

Caregivers Out Loud

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About this Episode

How can building a circle of care around yourself help you continue to deliver the best care?

Even the most devoted and capable caregiver needs support in their role. From weekends away to help around the house, letting another caregiver take some of the demands off your plate keeps you well enough, in body and mind, to continue your important work. 

Greer Rosequist has plenty of experience being a caregiver, from her former career as a nurse in long-term and palliative communities to offering respite to her sisters, who provide daily care for their mother. This experience led her to a different kind of network—a circle of care—full of friends who serve as consistent supports to those in the group and beyond. What began as a gathering of four has become a coffee collective of a dozen. They step in to assist in whatever capacity they can, from visiting house-bound friends to pitching in on yardwork to staying overnight so a primary caregiver can take some time for themselves. 

Though Greer has a background in healthcare, she encourages everyone to help out in whatever capacity they can. Anyone can call up a friend with a simple offer of a cup of coffee. You don’t need nursing skills, Greer says. “You just have to be there.” 

Discover the impact of reaching out, as both a caregiver and a friend:

  • How to balance care for others and care for yourself;
  • Recognize and respect the boundaries inherent in being a secondary caregiver;
  • Why it is helpful to appoint a spokesperson within your circle of care;
  • The societal importance of enabling people to live in their homes as long as possible.

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Quotes

  • “From the beginning of my career there was things available for the person who required the care, but the caregiver was just expected to carry through. But we are heading in an area now, and I think we’re already there, where people are going to stay home until they die. I just see in the future that we’re going back to, which I’m really happy we are, to family circles of care, and that people are more willing to help out if they have the right resources behind them.”
  • “Need a cup of coffee? Need to sit down for a few minutes? Why don’t we go outside on the patio for a little while? Why don’t we get out of the house? Why don’t we phone someone else and see if they can come and sit for a bit and let’s go out. Just that ease of allowing that person, the caregiver, to relax and to leave the situation, but know that the person they’re caring for is being respected and loved.” 
  • “It’s the most important thing. If you don’t have a village, you don’t have the care.”

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Transcript

[MUSIC IN // INTRO]

VOICE-OVER: You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel.

[MUSIC DEVELOPS]

BARB:  Welcome to the show, Bill is away today, so I’ll be filling in – I’m Barb MacLean, the Executive Director for Family Caregivers of British Columbia. You may recognize my voice when I shared my caregiving stories in episode 2: Speak Out With Courageous Conversations in Caregiving – and also in episode 4: How to Make Time to Care for Yourself with Self Care and Boundaries.

Today, we’re going beyond the strict definition of “family”, to include the power of building a circle of care.

[MUSIC CONTINUES]

For caregivers, members of their circle, like their parents, children, friends and neighbours, are really precious allies. They offer support in many ways, often with lasting impact. That role is also referred to as a secondary caregiver, and there may be more than one.

Greer Rosequist was part of my circle of care when my mom was diagnosed with cancer and dying. This is how I came to know Greer and her kindness is forever in my heart. Greer’s experience as a secondary caregiver, not only for her mom, giving her sister respite over many years, she also supported many friends when they needed it. This led to the informal formation of a Coffee Group, a like-minded group of women who said, “when you need something, we’ll be there”.

Having a network to draw upon in times of need, the Coffee Group nurtures everyone in the group when they need it.

I asked Greer about how the Coffee Group was created and how it enables support for everyone in the group.

[MUSIC OUT]

GREER: We started meeting a few of us in 2007, and with about, well, I think there was four of us at the time. We’ve now grown to 12 people and very close friends. And we also have pathways together outside of the Coffee Group. You know, we’re friends outside of the Coffee Group as well. We’re very tight knit. So when there has been problems in the past or people have needed support, emotional, physical, uh, support in their homes, we have come up to the plate.

BARB: How have you come up to the plate?

GREER: Well, I have one instance of our friend Susan. She had Parkinson’s, and as she was going through the process of the disease, becoming weaker, unable to walk, unable to drive, we all got together in a process of picking her up, making sure she got to coffee. And then when she was unable to come to coffee and it was too hard for her to have large groups, we went in small groups, two of us at a time, until she finally did pass away. So in that instance, it helped her husband. He could leave the house. He didn’t want to leave her alone ever. And it helped us stay in contact with her.

BARB: As a secondary caregiver, you often provide valuable support without being in the lead. When it comes to decisions, how does that dynamic feel for you, and how do you navigate that space? So, for example, are there moments when you found creative ways to contribute while honouring the primary caregiver’s role?

GREER: Being that caregiver for a friend, you have to be even a little bit more careful that you don’t step over boundaries. You’re entering into someone’s private space. Their home and into their relationships with either their partner or their children. So maintaining respect for what they want, but still being able to do just simple things, even if you just do some baking, even if you just make the phone calls. But if you’re invited in, that’s even better, physically, I’m talking about, coming in and actually helping them with care needs, housekeeping, yard work, such as what’s happening right now with my friend who fell and broke her hip. She’s going to be coming home from the hospital in a couple of days, and family has come out and, you know, they’re in charge. We are available for them. So on the periphery. We’re, you know, asking anybody what they could do to help and if they can help and if they’re going to be available to help. So we’re on the periphery.

BARB: In your approach, your coffee group is a circle of care. And it sounds sometimes very organized, but mostly it’s a group of people that care, and they’re ready, willing, and able to do what they can. So would you say it’s important for circles of care to give some thought then to what is possible for them in advance?

GREER: I do think that’s important, very important. But I also think that you need to have a spokesperson for the group. You can’t have the whole group calling and saying, you know, I’ll do this, or I’ll do that, right now myself and one other friend, because we were there right from the beginning when she fell, and have followed her through the hospital process. We’ve been talking to her and the family. 

So I feel like we are the instigators of care. So we’ve been communicating with the rest of the group and getting things together. And we’re going to make up a list of things that maybe we think need to be done for Michelle and check that out with her once she’s home and then have the rest of the group come in through coordination through my friend and I.

[MUSIC IN]

BARB: Greer’s perspective as the “instigators of care” is significant. As secondary caregivers, it’s important to facilitate the process with the care recipient’s family or those who are living with the person benefiting from the care. The circle of care created by the Coffee Group becomes its own family. They’re a unit that shifts along with the needs of the care recipient.

Caregiving in this way can also extend in different ways. Greer has also been a secondary caregiver as a respite caregiver for her mom, to give her sister relief.

[MUSIC OUT]

GREER: It’s been difficult for my mom. She expresses that she wishes I was there more often and closer, but since I live a distance away and, you know, yeah, have another life other than being close by, I also have two sisters who live right there. They need some respite as well. My mom is able to do quite a bit for herself within the confines of her house. But to get her to social things, to just have different situations within the house. Cooking, making meals, clean up, that’s all on my two sisters all the time. 

So I take several times through the year and go for blocks of time, so my one sister who lives in the house can leave. She has family in England which she needs to go see. So I’ve been over there many times for a month so she can go away. My other sister is there every day. She lives about 10 minutes away. But physically, she’s not as able to care for mom as I am because of her disability with her knees. So we all coordinate that. You know, if Michelle wants to go away, she lets me know she wants to go. I give her the dates or change dates around for doctor’s appointments, et cetera, and make a month clear and we make it work.

BARB: You know the saying, it takes a village.

GREER: Yes.

BARB: It sounds like the concept of the village is very much family, but it is also how the family works together as a team. And how fortunate for your mom that all of you sisters are able to do what you’re doing for your mom.

GREER: Yeah, and my mom appreciates that, we know that she does. And I enjoy it too. Like where she lives is where I grew up. So all my childhood friends are there and there’s a group of eight of us. So when I’m over there, it’s like going home again. You know, after you’re there for a month and the girlfriends are around and actually they’re the support for me, because I can’t really leave mom too much. So they coordinate around that and they’re the caregivers for me when I’m there for a month.

BARB: Greer, you are a retired nurse, and I can imagine some people might think, oh, well, that’s well and good. You’re a nurse, you have all these skills, you know what to do. What part of your role as a secondary caregiver has been related to nursing and what has been something else? And how might the ordinary person who doesn’t have your background be confident in being a secondary caregiver?

GREER: That’s interesting because I do think that my work as a nurse helps me when I have to go into a situation, because my work wasn’t in the hospital. It’s always been in the community, through long term care, through palliative care. So I think I have a little bit of an edge and I kind of feel like I can see a situation. But I find, too, that sometimes I don’t reach out for enough help because I think I can do it. And I think that’s very true of a lot of caregivers. They think they can do it until they burn themselves out. 

What I do say to people, there are resources in the community that you need to reach out to. If you don’t know what they are, then let’s research them. Let’s see what’s available for you, because you don’t have to do this alone. I have actually learned, especially with my mom’s care, that we were all in there doing it together, but we weren’t reaching out much, because we knew we could still manage it. But all of a sudden, it wasn’t manageable completely. So there are so many resources, such as family caregivers, need to reach out to that, they need that information, which is quite very available to us.

BARB: When you think about what you have created in your life as a caregiver who’s continuously thinking about the needs of others, and you help when you can. When you think about the future, how important do you feel it is for people to intentionally build their circles of care in their networks so when something happens, they have your back?

GREER: It’s very important. From the beginning of my career, there wasn’t that much available for caregivers. There was things available for the person who required the care, but the caregiver was just expected to carry through. And we could see that as nurses as we went along. But we are heading in an area now, and I think we’re already there, where people are going to stay home until they die. And I think families are more accepting of that. Not everybody, because it’s not an easy thing to do. We need to have those resources available for that person to be properly cared for at home and the caregiver to have the support to do that. I just see in the future that we’re going back to, which I really happy we are, to family circles of care, and that people are more willing to help out if they have the right resources behind them.

BARB: And family is who you say it is. It’s your circle of friends and people that you trust, right?

GREER: It is, absolutely.

BARB: Members of caregiver circles don’t always realize the importance of the support that they have offered. Sometimes it might seem a little small. After all, you’re not the primary caregiver, right? Looking back, what do you think the impact has been for the people you’ve cared for?

GREER: I think the Impact has been very positive and not just for the person that you’re caring for, but the caregiver. Because you can’t do it yourself. You really can’t do it yourself. You’re doing it for the caregiver. You’re helping them help the person who they want to keep at home. And I really do think that keeping people in their own environment, if possible, is the best thing to do. 

Before, when we first talked about this Barb, I looked back on different situations that I’ve been in with friends and family and keeping people at home, which, because of my background, I could do that, but I didn’t want to be the decision maker. I just wanted to be the person who could be there and support. But then you also fall into the role of being the nurse. And so for me personally, I think I was very fortunate to have those skills because I could do it where some people may not been able to. But you don’t have to have the skills to support a caregiver. You just have to be there.

[THEME MUSIC STARTS]

BARB: Greer has shown us that building a network of care for friends and family supports a primary caregiver. And yet, not only for the caregiver, but also for the care recipient. Being a caregiver you’ve probably thought about your own future and who will care for you.

Follow in Greer’s wisdom by creating your own circle of care. Find free guidance to build that network by calling the Family Caregivers of British Columbia Caregiver Support Line. Call toll-free at 1-877-520-3267.

[MUSIC CONTINUES]

Take steps to invest in your social relationships, keeping people close to you, because when you need them, they’ll be there. Every circle of care will be different based on what the care recipient needs, and yet, I wonder what “being there” could look like and sound like on a fundamental level.

GREER: [SIGH] Well, need a cup of coffee, need to sit down for a few minutes. Why don’t we go outside on the patio for a little while? Why don’t we get out of the house? Why don’t we phone someone else and see if they can come and sit for a bit and let’s go out. Just that ease of allowing that person, the caregiver, to relax and to leave the situation, but know that the person they’re caring for is being respected and loved. It does come down to just helping people get through a rough spot. And I think probably your caregiving, family caregivers has helped people get through a lot of rough spots.

BARB: I would definitely agree. And I am in awe of how you have lived your life in supporting other people. And I can only imagine the many, many, many lives that you’ve impacted, you and your circle, your families. And that is the gift that you’re giving and giving and giving.

GREER: It’s emotional, isn’t it? It’s the most important thing. If you don’t have a village, you don’t have the care.

[MUSIC DEVELOPS // OUTRO]

VOICE-OVER: Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel. Produced and sound edited by Organized Sound Productions. We acknowledge the financial support of the Province of British Columbia and the BC Ministry of Health – Patients as Partners Initiative.

If you like what you’re hearing, discover more episodes, and find more caregiving resources at FamilyCaregiversBC.ca. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.

Finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you can take us with you wherever you go. Thank you for listening and taking the time to learn and care for yourself with other caregivers, out loud.

[MUSIC ENDS]