Episode 2: Speak Out With Courageous Conversations in Caregiving

Caregivers Out Loud

Caregiving brings all sorts of challenges that call forth growth, and communication can be one of them. In today’s episode, we hear about why good communication with family members and healthcare providers is so important, and often difficult for caregivers. In your role as caregiver, you have to speak up for the needs of the care receiver as well as your own. You need to think about the future and what is in everyone’s best interests. This can be especially tough within families.

Highlights

How bringing the conversation to families prior to when the caregiving starts, can be a potential growth experience for the caregiver.
2:27 The impacts of being a surrogate parent to a younger sibling when a child becomes a caregiver.
4:24 Establishing a relationship with at least one health care provider who is able to see the evolution of stress and burnout in the caregiver.
Why it’s important for the health care provider to not only deal with the patient’s medical issues, but also the caregiver’s feelings. It’s up to the caregiver to allow themselves to be seen in that vulnerability.
6:15 How caregivers frame the need for more home care support and what that really means.
Early conversations with health care providers can build continuity and provide the support needed.
How the model of care is changing in North America to provide support for caregivers.
The important role that caregivers play in changing the healthcare system.
12:46 Strategies for caregivers to be more effective at communicating to health care providers.
Navigating the health system tops the list neck and neck with family conflict.
Advocacy for caregivers and health system collaboration to change how the health system is working to improve it.
How impactful it can be if caregivers are able to voice their own feelings and needs as a caregiver.
Celebrating caregivers with Caregiver Month.

Quotes

“You have to be able to expose your own vulnerability so at least the healthcare provider can pick up on it. But you also need to be able to connect that to the provision of health care that the patient is no longer being able to receive from this exhausted caregiver.” – Dave

“The family friend caregivers, who the care recipient says it is, that experience is different and distinct from the patient voice. They’re not one in the same. Our work is to bring forward that voice that is unique. A family caregiver role is unique. So if you’re discussing anything about that role, it’s got to be that voice.” – Barb

“The steep learning curve that comes with being a caregiver can really take you by surprise. Trying to get the answers and care you are looking for and figuring out how to communicate with medical staff – it’s like learning a foreign language.” – Jodie

Thank you!

BC Ministry of Health – Patients as Partners Initiative

Organized Sound Productions

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Transcript

Dave Even though you may have a designated caregiver, the comprehensive role that that individual has to play in terms of communicating and taking the pulse of the family. It’s been about risk. It’s been about guilt and fear that if we leave that at home to fend for himself, something bad is going to happen and I can’t live with it. It’s risk that feeds into that guilt and again it goes back to the more that you can anticipate and have these conversations, have things like living wills, revisit these things frequently as a family, you can do so much to make whoever provides the future caregiving to make their life easier and to make the one who’s being cared for, to make his or her life easier. Intro You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Jodie McDonald. Jodie Caregiving brings all sorts of challenges that call forth growth, and communication can be one of them. In today’s episode, we hear about why good communication with family members and healthcare providers is so important, and often difficult for caregivers. In your role as caregiver, you have to speak up for the needs of the care receiver as well as your own. You need to think about the future and what is in everyone’s best interests. This can be especially tough within families. Dave If one can even bring those conversations to the family, prior to when the caregiving need starts. I mean the typical path to caregiving is the individual who has the most fears about what might happen, volunteers to be the caregiver. The rest of the family who may not even want to think about this right now, is so grateful. But there’s been no conversation within the family, where the one who’s volunteered to care give say, “Here’s my beliefs about what the care means.” The more you can open up those conversations, the better it is, as difficult as that is. In many ways, it’s a potential growth experience for the caregiver. Jodie That’s Dave, a retired physician. I sat down with him to chat about how being a young caregiver to his mother as a teen, guided him later in life into his chosen career path. Then we dive deep into how you can navigate the current medical system and how that affects you in a caregiving role. Dave I had a wonderful father, who was a very small businessman who was working seven days a week 10 hours a day. And I had a wonderful mother who developed very, very severe heart and kidney disease and really became bedridden for the most part. And I had two younger siblings. When I look back on it, as a young person, you’re frightened at the prospect of your parent dying. She did end up dying at quite a young age. When I look back on how that impacted me, you know what made it a little more difficult for me to attend to my schoolwork. One of the biggest I think negative impacts, I had a very active youngest brother, who could be a handful and every time he would act up, my mom would kind of get upset, but she was in bed, so you end up becoming a surrogate parent. Because you’re not really at a stage of life where you understand really what parenting is all about. What you end up doing is, you becoming a disciplinarian. So it wasn’t good for my youngest brother and it wasn’t good for me. Many years later, we talked about it and things are fine now, but it wasn’t really good for either of us. And I think the other fallout was that, after I had finished university I ended up in a job that was quite removed from healthcare, but ended up at a late stage of life applying for medicine in my case, and wanting to go into healthcare, and I think it was probably those early formative experiences that drew me back to wanting to be a caregiver myself. Jodie Now at the end of his medical career, Dave has seen both sides of the story. He has seen how hard it can be for caregivers to communicate their needs and shares some thoughts on how to make it easier… Dave A 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. 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. Jodie Yes. So what you’re saying is it’s important for the health care provider and in this case hopefully the family physician, to be able to not only deal with the patient’s medical issues, but then you can just take a beat and say, “How are you doing?” Take that little snapshot each time that they are seen, so they can have some track and I think even, I know for caregivers sometimes when they’re even asked that question, it can be quite emotional for them, to be seen and even to have that lens turned back on themselves. So then I also hear you saying, it’s also up to the caregiver to allow themselves to be seen in that vulnerability. Dave Absolutely. The one thing caregivers should feel free to do is to say to the individual they’re providing care for, I’d really like to come to that visit, so that I can be seen in that role by your healthcare provider so that a bond of trust can develop. Because all the personal information, confidentiality, things start to fall away when you can build that bond. And it just makes everybody’s life easier. Jodie Yes. As a health care provider did you have lots of experience with caregivers saying to you, “I’m going to need some support because I’m coming to the end of what I’m able to do?” Dave Yes. Most often it’s framed either around a need for more home care supports. Or a crisis where there needs to be real consideration to make the transition from living at home in the community to a more structured long term care facility. That’s often where those things really hit the road. But the more that one is able to plan and predict when those things are going to happen, the earlier the intervention can occur. It’s far better for the caregiver to have the early conversation with the healthcare provider, you know I’ve been feeding this individual for the last two months and I think I can maybe do it for another month and that’s going to be it. Rather than I can’t do it anymore. Because it takes a while to plug in the home care supports and it certainly takes a while to arrange whether it’s respite care and long term care or a transition to long term care. So again, that’s why the honesty, the openness, and building continuity in that relationship between the healthcare team and that informal caregiver. Jodie So one of the challenges there I think is that there’s often quite a lot of emotional charge for the caregiver around the idea that maybe I can’t do this. And especially what we tend to see is when decisions have to be made about potentially moving the care receiver into long term care or a residential facility, that’s often perceived by the caregiver as a failure of their caregiving. Often when they’re finally having those conversations with healthcare practitioners, it’s not just a conversation about planning and practical things. Even the asking for more homecare is sometimes that feeling of I’m letting this person down, and that can bring a fair amount of um, let’s just say static to the conversation that caregivers are having with healthcare practitioners. Dave Yes, yes yes. That’s right. Jodie So what’s being done to change things? How are healthcare providers working to improve communication, and what can caregivers do to help themselves? Dave shares his view from the inside. Dave The model of care itself is changing. At a primary care level now which is where most individuals are going to contact either a healthcare experience for themselves or a caregiver experience. In fact, all of North America is moving to a concept called the medical home, where it’s no longer just an isolated physician or a nurse practitioner, but it’s a team where you can draw on a broad range of expertise and skill sets. And I’d like to think now that nobody with healthcare needs, gets into that system without being asked, “Who are your caregivers? Where are you finding support in your own community or family or neighbourhood?” And that’s really important. It’s just that we’re very, at very early stages with that. It really does need a bit more formalization and maturity, it’s a big ship to turn around. Jodie Absolutely. And it’s the caregivers’ insights that are going to improve caregiver support. It’s the caregivers who know what they need and if they can continue to communicate that, then caregiver support can only get better. And I understand how isolating it can be to be a caregiver in this society, but just to know that there are people who care about it a lot and there are people who want to improve daily life for caregivers. Absolutely. That takes a much bigger societal shift. Dave It does. It really does. A really good example is the ability now for physicians who for so long have laboured in a fee for service system which has many perversities built into it, to be able to talk and not lose income I mean that’s a crass thing to say but it’s a reality because office overheads are very very high. So the ability to actually talk whether it be patients that don’t have to come into the office because you know them and you can solve the problem over the phone or over a video link. And similarly, with caregivers, who need to raise the flag about something or ask a question about something. Jodie Yeah. And that they can be compensated for this conversation because they’re important medical conversations. Dave Exactly, exactly. Jodie So it sounds like you’re saying that you see it changing. You see the need for it to change. But you also see some movement in the way that we’re approaching caregivers. Dave As I say, it really is a very big ship to turn around. I think one of the most encouraging things is the new grads that are coming into the system now, whether they be nurses, physicians, nurse practitioners, the whole gamut of important healthcare providers. They are demanding a different kind of paradigm of care, a different model to work in a much more collaborative, family centred with a broad definition of family. It’s whoever the patient defines as family. That bodes well for sure. But it just takes a lot of work and time and patience and continued advocacy to change that system. And if we’re going to continue to be able to afford the kind of healthcare system I think we’d all like, it just emphasizes the important role that caregivers play. Jodie Those of us in caregiver support have spent a lot of time and we have webinars about this and we do workshops about trying to do some education with caregivers. Not only about what is normal about caregiving and that’s often a really important piece is for caregivers to understand that the guilt and the resentment and the exhaustion and the all of those emotions are actually pretty normal in caregiving, but also to try to coach caregivers in more effective or beneficial ways to communicate with the healthcare system and the practitioners there. So what do you think would actually help care caregivers do that? Dave That’s a very big question. One strategy is to be able to as clearly as possible define the challenges that the caregiver is facing through the lens of the individual who is receiving that care. Let’s presume that the caregiver is coming in with the person who’s receiving the care and they’re having an encounter with a health care professional. It’s being able to frame the problem as an informal caregiver no longer able to provide this very important service or this function. What can we do about that? How can we solve that? On the other side of the practitioner, it’s really important that the practitioner be able to twig to inordinate stresses that the caregiver is under, so that the health care professional is able to shift the focus to the informal care provider and attend to any crises in that individual’s life. So in many ways, the informal caregiver has to juggle those two scenarios. You have to be able to expose your own vulnerability so at least the healthcare provider can pick up on it. But you also need to be able to connect that to the provision of health care that the patient is no longer being able to receive from this exhausted caregiver. Jodie The steep learning curve that comes with being a caregiver can really take you by surprise. Trying to get the answers and care you are looking for and figuring out how to communicate with medical staff – it’s like learning a foreign language. Barb Navigating the health system, that’s what we call it, the ins and outs of how it works. How do I get it? Why is one place different than the other? Jodie That’s Barb Maclean, Executive Director for Family Caregivers of BC. Barb That whole system is filled with unique pockets of do it this way under the circumstances and then it changes and so it can be one of the most frustrating. In fact, it probably tops the list neck and neck with family conflict is navigating the system. Often it is so confusing and frustrating that people don’t know what to do next. That is why we offer support around navigating the health system. Trying to help caregiver plan about what you could do next, how to advocate for yourself, try this, not doing it alone. And understanding that it is complex that if a health care professional themselves finds it complex, you can bet the average person is finding it tricky. And that’s just the way it is at this time. I mean, we’re working on improvements in health care, system transformation, team-based care, but today, getting support around health system navigation is one of the most powerful things that we offer here. Jodie There’s actually also a lot of advocacy that happens at the levels of health care planning and systems as well that Family Caregivers of BC is at lots of different tables trying to effect some change in the way health care systems are delivered as well. Barb In addition to the one on one and group caregiver support directly and the education components of what we do, it’s a little bit hidden from the public view, but it’s behind the scenes advocacy, and health system collaboration to change how the health system is working to improve it. Sitting at tables, working on policy changes, and training physicians and healthcare providers in educating them to the role of caregivers so that they can support the identification, the referral, and the inclusion as partners of care. Really, really important work that we’re doing. Jodie And I know that one of the things that most strongly informs that work, are caregiver voices themselves. Barb There’s nothing more important. If you have an experience on any topic and people are planning to make changes and improvements around that topic you need to be there. The same is true for caregiving. So if there’s a table where caregiving is being discussed, there needs to be a caregiver voice there and we work really, really hard to work with, recruit, and support caregivers to be that voice. Often we’re there in the early stages, and the role of caregivers is increasing. In person and family centered care, the family is often represented really by the family caregiver, the family or friend. And the family friend caregivers who the care recipient says it is, that experience is different and distinct from the patient voice. They’re not one in the same. Our work is to bring forward that voice that is unique. A family caregiver role is unique. So if you’re discussing anything about that role, it’s got to be that voice. Jodie Caregivers focus so much on the small daily small changes in the health of the person that they’re caring for – accompanying them to doctor’s visits, monitoring health indicators, observing symptoms… It makes sense that the health of the care receiver is in the spotlight, but what about the health of the caregiver? This is a question you might not hear very often in a formal healthcare setting. Imagine if you were able to voice your own feelings and needs as a caregiver. What impact would that have? Barb I’ll share a story. It is a story that’s repeated hundreds and hundreds of times a year here. And that is, somebody talking about the health of the person they’re caring for. And we get past that in the conversation and then the question comes, so how are you doing? And there’s a pause. And perhaps a tear. Someone is usually choked up. They will say, nobody’s asked me that before. I find that amazing. So if we were to change one small thing in our system, it would be to stop and ask how a caregiver is doing? The good news is that that is happening more and more as our health system shifts toward person and family centered care, health professionals are realizing that the well being of caregivers is an important element of good health outcomes for a patient too. As we as caregivers become more knowledgeable we begin to realize that for ourselves too. That we are as important as the care recipient. Ultimately our health matters too. I know it’s been used a lot, but when you’re on an airplane and you put your face mask on for oxygen, you’re no good to helping other people if you can’t breathe, and that’s the same philosophy of caregiver support. You need to be well and resilient to be a good caregiver. What people are doing in a caregiving role is amazing. It’s above and beyond a lot of the time. I am filled with admiration, respect, and such a need to recognize that role. And that’s why we, once a year we celebrate family caregiver week, this year we’re moving into family caregiver month. And it is really meant to shine a light on the incredible role and the value that caregiving plays in society and really to expand our awareness of what’s really going on with 80% of the care is by family members and friends. 80%. It’s not healthcare providers. It isn’t the paid health care workforce. It is our family members and friends. That’s truly significant and valued and so we just want to shine a light that this is going on because most people don’t realize it. So May family caregiver month. We plan to celebrate. Jodie Yes. Hug a family caregiver today. Barb Hug a family caregiver today and say how can I help you? And don’t take no for an answer. (laughter) Jodie Dave and Barb have shown us that, in your role as a caregiver, you need to communicate effectively with both family and health care professionals. You have to advocate for the needs of the person you care for, but also for yourself. It helps to attend appointments with the care receiver, becoming visible to healthcare teams and making your wellbeing part of the picture. How can you step forward and be seen? It is important to start conversations about caregiving early – to find solutions together before you reach crisis point. What conversations do you need to start? And who will you ask for support? You can call the Family Caregivers of BC Caregiver Support Line toll-free in BC at 1-877-520-3267 to discuss these and any other questions you might have about caregiving. 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. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories. And finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you don’t miss an episode. Thank you for listening and taking the time to learn and care for yourself with other caregivers out loud. Next time on Caregivers Out Loud… Jim I was concerned about my friend, but I was also concerned about me. I really value my friendships and the thought of losing gradually through something as strange as simply distance. Losing a friend like that troubled me a great deal and I pondered and thought and wondered how to do this. Part of the distance was not knowing what to do. But a big part of the distance was simple respect. Respect for him. Respect for his wife. Giving them privacy. They’re going through a growth era in their life that I have no business entering. So showing that respect was on my mind. So I needed some way to balance my caring for my friend and the respect that I have for him.