Caregivers Out Loud
A space to connect, listen and learn with other caregivers.
Episode 1: Accessing Caregiver Support Networks
Thank you for joining us for our inaugural episode! Over this first season, we’ll focus on caregiver wellbeing. How getting the support you need is vital. Why good communication with family members and medical professionals can be difficult, but rewarding. We’ll share some essential tips on how to look after yourself and you’ll hear stories from caregivers who have spent a great deal of time and energy living these experiences. These inspiring people will bring balance to caregiving along with the other aspects of your life.
Today, we take a look at how few of us can “go it alone” as caregivers. Having relationships with friends or organizations can boost your emotional strength for the marathon of caregiving. We’ll examine different sources of support available to caregivers, how to overcome challenges that prevent you from reaching out for support, and what it is like to really acknowledge your role as a caregiver. You’ll hear from caregivers who struggled with overwhelm before reaching out to access different kinds of support and the difference it made to their lives.
- 2:05 What is a caregiver?
- Only 42% of caregivers self identify as a caregiver.
- 3:55 The emotional work of caregiving.
- 5:38 The rewards or benefits for caregiving.
- Being an advocate – speaking on the care receiver’s behalf, not for them.
- Caregivers need to access support to be a good advocate.
- How to cope with caring for multiple people by sharing information with others.
- Acknowledging that you need help and educate yourself to be a better caregiver.
- Most people who come into the caregiving role are not trained for it.
- 15:52 How support services can normalize what it is to be a caregiver.
- 16:35 The benefits of a support group for caregivers.
- Connect with others as if you’re part of a neighbourhood.
- 19:00 How attending a support group meeting can leave you feeling with less weight on your shoulders.
- 20:44 How to ask for help and how to accept support.
- Know the importance of yourself; the healthier you are, mentally and physically, the better you will be able to care for someone else.
- “The more you open yourself up to communication with support groups, to support network, the more you think yes, you know, I guess you are right, I am a caregiver.” – Marlene
- “I acknowledged, I need help. It’s also very difficult for a caregiver to take that first step, thinking that it’s for themselves because I don’t need any help. But if we can share with them that the more you learn, the more information you have, the better you’re going to be as a caregiver.” – Marlene
- “Most people who come into caregiving, it’s not something they were trained for. It’s something that’s just come their way or they felt compelled to become a caregiver.” – Ben
- “It takes caregivers to participate in community and it also takes people to offer that community to the caregivers. If everyone’s doing their piece, then caregivers can feel held by community.” – Jodie
Links Mentioned In the Episode
- The Change Foundation. For a brief summary, see Spotlight on Ontario’s Caregivers.
- Spotlight on Ontario’s Caregivers report – November 2018; page 15.
- Caregiver Support Line, Toll-Free in BC, 1-877-520-3267.
Attending a meeting and having that support. The people that are there attending, they become your friends in a different way. They want the best for you too. They’re all caregivers. They all care about each other. And sometimes their experience is what’s going to be the turning for you. And sometimes hearing what others are going through is positive because A, I’m not alone. B, not so bad for me. I don’t think there’s one person that leaves the meeting without feeling less weight on their shoulders and a smile on their face.
You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Jodie McDonald.
How are you feeling today? As a caregiver, you probably didn’t plan for this role in your life. And with that comes a shift in perspective and expectations. Over this first season of Caregivers Out Loud, we’ll focus on caregiver wellbeing. How getting the support you need is vital. Why good communication with family members and medical professionals can be difficult, but rewarding. And we’ll share some essential tips on how to look after yourself. You’ll hear stories from caregivers who have spent a great deal of time and energy living these experiences. These inspiring people will bring balance to caregiving along with the other aspects of your life.
Today, we take a look at how few of us can “go it alone” as caregivers. Having relationships with friends or organizations, like Family Caregivers of BC, can boost your emotional strength for the marathon of caregiving. We’ll examine different sources of support available to caregivers, how to overcome challenges that prevent you from reaching out for support, and what it is like to really acknowledge your role as a caregiver. You’ll hear from caregivers who struggled with overwhelm before reaching out to access different kinds of support and the difference it made to their lives.
So, what is a caregiver? One of the things that might make it harder for caregivers to self identify, is the natural tendency towards giving and fixing. One of the difficulties in offering caregiver support is that you don’t recognize yourself as a caregiver, in the formal sense.
We don’t think of ourselves as caregivers until something happens. Maybe you’re more open to listening and accepting that you are human and what you are doing is not, I’m going to use the word normal, normal for a caregiver because we don’t think about it. But for the general lay person, it’s not normal. And the more you open yourself up to communication with support groups, to support network, the more you think yes, you know, I guess you are right, I am a caregiver.
That’s Marlene. I connected with her over the phone to chat about what it meant to be supported during her caregiving journey.
My name is Marlene Schlotterbeck. Over the last 17 years, I’ve been a caregiver to my mother, my mother in law, very dear friend, and for the last five or six years I’ve been a caregiver to a wonderful gentleman and his sister. He is now 99. And she is 92.
As you can hear, Marlene is a caregiver. But in the beginning, she didn’t even realize it. A recent Ontario report found that only 42% of caregivers self identified as a caregiver. 35% didn’t understand they were caregivers until the role was explained to them. And 24%, even after the role was defined, still didn’t see themselves as caregivers.
The work of caregiving and not just the physical tasks, but the emotional labour of caregiving, the holding all the pieces together in your mind on a daily basis does go beyond being a daughter or a daughter in law or a friend.
It’s really difficult to accept that you are a caregiver because that’s not who you think of yourself. You think of yourself as the daughter, the daughter in law, the friend, someone that wants to be there to help them to do what you can. All of these people that I’ve been so blessed to care for to be part of their journey are beautiful people. They gave all their life to others and it’s their turn.
I know the gentleman, Vern, that I now care for at 99, he has looked after every one of his siblings over the course of his lifetime at some point or other. His sister and I were very, very good friends and we never thought about him as needing assistance. We talked about the mentally challenged sister in that, you know, when something happened to Helen, I would be there for Eileen. At no point did we ever think of her and because he was always the head of the family. He was always the grounding point for everyone. And for him to look at me and say, I’m so lucky to have you in my life, it just warms your heart and you think no, the family was lucky to have you in their life. And now it’s your turn and I am so honored to be that person to make every day of your life more enjoyable.
Oh, that’s so lovely. So what else about caregiving do you think is rewarding or beneficial for the caregiver?
You can’t put words to seeing the joy that you bring to someone else. Knowing that I honestly don’t think Vern would be alive today if it wasn’t for me. And that’s not patting myself on the back that’s just being able to be there for him, to advocate for him, and I think that is the biggest role that a caregiver isn’t prepared for and it’s so absolutely necessary. The medical system in Canada is far above and beyond many other countries and we’re so blessed to have it. However it has its faults as well. Overwork, understaffed. These people in our care, these people that we love and cherish, are not able to speak for themselves in many situations. In Vern’s case he is an absolute gentleman. And if a doctor were to tell him to jump it would be how high and which way because doctors are professionals that you always admire and listen to. Unfortunately, they still are excellent professionals, but they don’t have the time that they once had to know their patients. So we have to sometimes question them and we have to be the one to give them the information on this person that can no longer speak for themselves.
And what I hear you saying Marlene, is how much you value Vern as a person. And that part of the role of caregiving is for you to sort of be a bridge and an advocate for medical professionals to also see his value as a person.
That is so well said. And I think for all caregivers, it’s really important to know you’re speaking on their behalf, not necessarily for them. I always take the time to speak with Vern to let him know what is going on. And what do you think would be the right way to handle this? What would make you happy? Get his feedback because it’s about him and in the end, he’s the one that’s being affected. I will take what he says and either adapt it or maybe add to it, to what I feel is overall beneficial to him. But at no point do I ever forget, it’s about him and he has a say in his life. And he needs to be made aware of what’s happening and kept up to date on things. So often, we get so wrapped up into the role of taking care of this individual that we forget to bring them in on the conversations or keep them up to date on what’s happening.
Being an advocate for the person you are caring for can be rewarding. You bring knowledge to the care team that they might not otherwise have. But like the over one million caregivers in BC, many are not currently accessing any kind of caregiver support. Whether it’s education, such as learning a different understanding of communication skills or even that emotional support. It wasn’t until the pressure of caregiving brought Marlene to her lowest point, that she was given a nudge to recognize her role as a caregiver and accept support.
Vern was in independent living and one of the management could see that I was failing emotionally, physically. I was on the verge of emotional breakdown. And she stopped me and she said, hey Marlene, I have something that I think would be of interest to you. She handed me a caregiver connection, one of your newsletters. She said, I think you would be very interested in this. They have a support group. And I think it would benefit you of going. Oh, thank you so much. I really appreciate that. Yeah, okay. I’ll look into it. As I walk away and in my mind it’s like how on earth am I going to add something else to my life? There’s no way I can do that. I don’t have the time. And I’m like, okay, well, that was really sweet of her, I appreciate it. But, you know, we’ll put that on the back burner. Well as I said, I also care for Vern’s sister, who had been in care for 20 some years at the same facility, everything was smooth. Now, Eileen had to move into full care which was a huge change. And I’m like, oh my goodness, how am I going to cope with this? How am I going to be here every day for Vern and be there for Eileen? So Vern and I discussed it. So I am going to attend the family council meetings, because I can’t be there every day for Eileen, but I can be there and learn what’s going on. So I did that. And I could see, hey, these are all caregivers. These are people going through the same thing that I’m going through. These are people that need to know about Family Caregivers of BC so I brought it up at a meeting. Well, how can you talk about something if you don’t have the foundation? So I said, oh, there’s a meeting coming up, and I’m going to attend the meeting. So I’ll come back and share what I’ve learned with everyone. And that’s why I attended the meeting, not for myself, but to share information with others. And I attended that meeting and that was when the light went off, that oh my goodness, you are wound up like a top and that’s when I just spun out of control and blah, blah, blah, blah, blah. Yeah, I went back and reported it to the group. But more importantly, I acknowledged, I need help. It’s also very difficult for a caregiver to take that first step, thinking that it’s for themselves because I don’t need any help. But if we can share with them that the more you learn, the more information you have, the better you’re going to be as a caregiver.
That’s a lovely story of going from not having any support to it’s a funny idea that of course, you were learning about it in order to help others, but then understood, oh actually this is for me. This has a value for me. What is the difference when, as a caregiver, you get support for yourself? What changes?
First thing that comes to mind, a weight off your shoulders. You’re not alone. There’s help. You don’t have to deal with this on your own. There’s a phone number. You could just call. It could be two in the morning that you wake up and you think, Oh my goodness, how do I handle this? Well, you can log onto your computer and find the answer. It’s hard to put into words how something or one organization can offer so many different things and be so invaluable. I can’t put it into words. It was like hitting my head against a brick wall. Oh my goodness, there is help out there.
Marlene mentioned that you don’t have to do this on your own, that there’s a phone number. Make that connection and get the support you need, just like Marlene, by calling the Family Caregivers of BC, toll-free in BC to at 1-8-7-7-5-2-ZERO-32-67.
Support networks offer a chance for your feelings to be seen, heard, and validated. You can talk more easily with other caregivers about things you may struggle to share with healthcare providers or the person you are caring for. Going it alone without a support network can leave you feeling overwhelmed. Ben has heard first hand many stories of overwhelm shared by caregivers who struggled alone before finding support from a group.
My name is Ben Ziegler and I am a support group facilitator with Family Caregivers of BC. Mostly I facilitate a men’s support group. So that’s a support group of men only who are also family caregivers.
Years ago, I was a part time caregiver for both of my parents and they didn’t live together. So there was different aspects that I became familiar with. They’re both since passed away. But when I reflect back on it, I think of all the challenges I had, and how hard it is to deal with the system. And I had no support. Well, I had siblings support I had some, you know, friends or whatever, but there was no formal organization supporting me. And so five or six years ago, I heard about a volunteering opportunity with the Family Caregivers of BC. And I thought, wow, I’m going to give back because I sure wish there’d be something like that out there, so I haven’t looked back. Certainly, people who end up in the caregiving role, it often comes all of us all of a sudden. And the overwhelm and stress, stress hits all of a sudden, and inevitably, they’re in react mode until they get a handle on things or trying to get some stability back in their lives.
So you mentioned earlier the word overwhelm. Do you find that that’s a common experience that caregivers have?
Maybe overwhelm, I’m not sure if that’s the best word necessarily, but most people who come into caregiving, caregiving role, it’s not something they were trained for. It’s sort of something that’s just come their way or they felt compelled to become a caregiver. It’s something new. Whenever we change, there’s a situation that’s changing and I think that’s maybe where the overwhelm is. But I think it’s, it’s our natural reaction as people to get a little flustered when something new is put on our plate. For caregivers, that’s often the case. It’s new. They don’t know what’s involved. There’s all this uncertainty out there. And when we feel a loss of control that’s, that’s really the definition of stress is feeling a personal loss of control.
So how can organizations like Family Caregivers of BC or other organizations across the province, how can they address the feelings that caregivers have towards that change through caregiver support services? What does that do for caregivers?
My experience is primarily in the support group context. It normalizes what it is to be a caregiver. That includes all the challenges that caregivers face. So it’s okay to feel, we use that word overwhelmed but to feel stressed out, and not sure of what to do. That is totally normal. Family Caregivers helps with that. Because I think when people feel comfortable, or they feel more inclined that, hey, others are going through the same thing, then that’s a little bit of a reference point for where do we go from here? Like it’s okay to feel the way you’re feeling. Now, maybe we can talk then, individually or one on one or in a group. Where do we go from here? How do we move forward?
Sometimes you see someone or you know someone who you think might benefit from being in a support group. And what are those benefits would you say? More connection, less stress? How do the group’s benefit caregivers?
Yes, and yes. More connections, certainly, making connections is good and that could be personally within the group. In the groups I’ve been involved with, sometimes the people in the group becomes friends outside of the group. Or they get the, going through the right channel to get the name of the other person and then they do something with them, right. So that’s a connection that’s outside of the group. Those kinds of things like venting, getting information, hearing peer advice about some situation. We feel stressed out, overwhelmed, back to overwhelmed, when we don’t have control over things. When you are able to sort of vent then you are, in some ways emotionally purging some things that it’s sort of blowing off steam, literally, I think you’re venting. That lowers your, those attributes which you probably don’t feel good about. You know, like, being snarking off at somebody just because you’re so wound up and concerned.
Right, so you can leave some of that in the group. And when you leave, you’ve left it behind, you feel lighter.
Yeah, exactly. Yeah. Yeah. And same with getting information. So if you were wondering about where can I put my wife or my husband or my mother, what are my housing options here? She can’t live at home with me anymore. So often there’ll be somebody in the group who has a, has had experience with that and had to make that same decision or investigate that and they can give, help with the roadmap.
Right, so we’re not always reinventing the wheel.
Exactly. Because that’s more information, right? Then we feel, we feel empowered and we don’t feel quite as stressed out knowing that there is these options or this is the path we have, I have to go to, you know, to do good. Connect with others. Think of it as, in a way as if you’re part of a neighbourhood. Get to know your neighbour. Maybe your neighbours are other caregivers. Or people who are in the business of working with caregivers, supporting caregivers. So get to know your neighbours and the street won’t be so threatening a place.
Marlene echoes this feeling. After attending a couple of support meetings with Family Caregivers of BC, Marlene has felt the benefit of a confidential space to share her feelings with other caregivers.
Attending a meeting, and having that support. The meetings are held monthly, so you know, it’s been a month since you’ve been there. And if you’ve had a bad month, which has happened to some people or you’ve had a bad situation, just to know that it’s a safe place. All of these meetings are confidential. So what is said, happens in the room, stays in the room, and so that’s a comfort. You know that you can say whatever you want and you’re not going to be judged. The people that are there attending, they become your friends in a different way. They want the best for you too, they’re all caregivers. They all care about each other and sometimes their experience is what’s going to be the turning for you. You’re out of your normal situation and you’ve made it to the meeting. So you need to pat yourself on the back because you’ve done something for yourself. And sometimes hearing what others are going through is positive because A, I’m not alone. B, it’s not so bad for me. And learning that is, is so beneficial. At the meetings I attend, I don’t think there’s one person that leaves the meeting without feeling less weight on their shoulders. And a smile on their face.
Although meetings can create a wonderful space for connectedness and sharing stories, what about your personal network of family and friends? How can they provide value and support for you to continue to be a caregiver? Marlene offers her advice about asking for and how to receive help.
How can I support you? That’s really important, as a caregiver to be able to ask for help. And so often someone will say, well, is there anything I can do for you? Do they need it or not? It doesn’t matter if they’ve asked the question. It’s up to you to say yes or no. So I think it’s really important to have a little notepad and make little notes of things that people could do for you. Because if somebody says, is there anything I can do for you? If you keep saying no, thank you. They’re not going to ask anymore. So I think it’s important to think, you know, these people have asked, I should accept it.
And I should take it seriously. What if they actually mean it? Because I think they do, but they don’t necessarily know how to be more specific.
Exactly. They don’t know what your needs are, what your wants are, but if you have that little notepad handy and as things occur to you, you just write something down. You can say, Oh, you know, thank you for asking. You know, I’m all out of whatever. And I could really use that next time you’re at the store. Would you mind picking that up for me? You know, and, and then you’ve opened up another layer of friendship and support for yourself. And now this person feels Oh, I can genuinely help. And next time I go to the store, maybe I’ll call them and ask them. You’ve opened up a whole new avenue of communication.
Yes. And what you’re speaking to Marlene is the fact that it’s actually maybe the caregivers responsibility to know what they want and need and what would actually be supportive.
And you can’t do that if you’re not paying at least a little attention to yourself.
Exactly. Know the importance of yourself. Know that the healthier you are, mentally and physically, the better you will be able to care for someone else. Taking baby steps at the beginning will go a long way. Because again, you don’t know if you’re going to be a caregiver for weeks or years. And taking immediate care of yourself so that you never get into that totally exhausted state. Because once you’re in that exhausted state, it’s nearly impossible to get out of it. Accepting help from others is so important and finding a support group. Just because the first support group you go to, if it doesn’t give you what you need, that’s just one. There’s one that’s out there for you and it’s really important to take advantage of it and learn. Take the time to read about self care and about communication. You have to prepare yourself for what the unknown is. And don’t be afraid to ask for help. It’s human.
It takes caregivers to participate in community and it also takes people to offer that community to the caregivers. If everyone’s doing their piece, then caregivers can feel held by community. Marlene and Ben have experienced first hand both the overwhelm of going it alone as a caregiver and the huge difference it can make when you open up to receive support from your community. As Marlene said at the beginning of the episode, the more you open yourself up to communication with support groups, and support networks, the more you think yes, I guess you’re right, I am a caregiver. If you recognize some of the stories shared here today, and feel that you or someone you know could benefit from caregiver support, pick up the phone and call toll-free in BC at 1-877-520-3267. You can find out more about the kinds of support available on the Family Caregivers of BC website at www.familycaregiversbc.ca.
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. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.
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Next time on Caregivers Out Loud…
The foundational piece of that is being able to establish a relationship with at least one health care provider who is able to see the evolution of stress and burnout in the caregiver. Honestly, that’s nine times out of 10, that’s most likely to happen at the primary care level, because that’s where most of the contact is. If the patient is involved with several specialists, that care coordination, the continuity still in most cases, is with the family doctor or nurse practitioner. And so the more you can be part of the encounter, so that relationship is established, the less likely things are to go off the rails for either the patient or the care caregiver.