Caregivers Out Loud
How can you build a healthier relationship with death and dying that will benefit both caregiver and recipient?
Aaron Yukich is an end-of-life doula, mindfulness practitioner, and hospice care worker. In his work with the Family Caregivers of BC Caregiver Support Line, Aaron incorporates meaning-making and self-reflection into his sessions with caregivers, helping them uncover new ways to provide support to their care recipients without overlooking their own well-being.
The end-of-life process has many varied aspects. Aaron helps caregivers navigate this intricate spiritual and emotional experience with grace, through activities and mindsets that can offer comfort and even joy. He also guides them in practical considerations, such as establishing often-overlooked financial and personal mental health support structures.
Aaron shares his holistic perspective on providing end-of-life care:
- Moving through the transition from palliative to hospice care
- Resources for addressing the impacts of caring for a care recipient
- Imbuing the time your loved one has left with more meaning
- Considering death and dying through a lens of celebration and reflection as well as grief
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- Death doesn’t have to be something that’s hidden away in a bedroom or that needs to be in a hospital or in a residential facility. It can be at home and the person that’s dying can be celebrated while they’re still alive. And they can be really in the middle of things. it invites families and the care recipient to come together and reflect on one’s life and what has been meaningful to that person in their life and how do they want to capture that in a way that their family can appreciate going forward. And family members can be a part of this as well.
- This is something that we always encourage family caregivers to do, is to make sure they’re a part of those conversations, so that they know what’s going on. Because they are the ones that are there on the ground all the time and they really know their loved one or their care recipient best.
- I think it’s worth looking at both sides of the picture. So we have what are the meaning-making activities, that we’re focusing more on the care recipient, but also perhaps more so later on, what are the activities that are going to be helpful for the caregivers, for the family members, the friends?
- United Way Better at Home – https://betterathome.ca/
- Island Health Dementia Video Series – https://www.islandhealth.ca/learn-about-health/seniors/dementia-video-series
- BC Centre for Palliative Care: www.bc-cpc.ca
- Discover a local hospice – https://www.chpca.ca/listings/
- Canadian Virtual Hospice care information and assistance – https://www.virtualhospice.ca/
- Hospice resources with a cultural focus – https://livingmyculture.ca/
- Navigating the End of Life: A Road Map for Caregivers webinar – https://www.familycaregiversbc.ca/archives/video/navigating-the-end-of-life-a-road-map-for-caregivers
- Finding Peace at the End of Life: A Death Doula’s Guide for Families and Caregivers by Henry Fersko-Weiss (2020 edition) – https://bookshop.org/p/books/finding-peace-at-the-end-of-life-a-death-doula-s-guide-for-families-and-caregivers-henry-fersko-weiss/13032460?ean=9781590035023
- Caring for the Dying: The Doula Approach to a Meaningful Death by Henry Fersko-Weiss (2017 edition) – https://www.amazon.ca/Caring-Dying-Doula-Approach-Meaningful/dp/1573246964
- BC Grief and Bereavement Society lists of support groups and other helps for BC residents (also some options are across Canada) Support Groups & Events | BC Bereavement Helpline (bcbh.ca). Contact the Helpline at 604-738-9950 and Toll-Free 1-877-779-2223
- TalkDeath – Death Positive, Grief and Bereavement Resources – www.talkdeath.com
- Family Caregivers of BC Caregiver Support Line: 1-877-520-3267 (Monday through Friday 8:30am to 4pm PT)
Connect With Us!
- Family Caregivers of BC Website
- Visit us in person at #6 – 3318 Oak Street, Victoria, BC, V8X 1R1. Hours are Monday through Friday, 8:30 am to 4:00 pm
- Telephone: (250) 384-0408
- Toll-Free Line Within BC: 1-877-520-3267
- Email: email@example.com
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[MUSIC IN // INTRO]
VOICE-OVER: You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel.
BILL: Everyone copes in their own way with shocking news impacting their life. The reaction may depend on age, family situation, cultural background, and spiritual beliefs. As caregivers, we advocate and provide a voice for our care recipients, especially when going through the death and dying process. In our era of medical and information culture, we must remember the important layer of the non-cognitive and spiritual aspects of end-of-life care, that requires a human touch. When entering this death and dying territory of hospice and palliative care, having someone along your side who understands the process is valuable.
Meet Aaron Yukich, who is passionate about empowering caregivers and their recipients to create care plans and support systems that uphold their dignity and sense of autonomy, while honouring their unique cultural traditions, belief systems and lived experience.
When you call the family caregivers of BC Caregiver Support Line, you might reach Aaron, who draws on his training as an end-of-life doula mindfulness practitioner and time spent working in hospice care. Aaron also encourages you to invite presence, self reflection and meaning making into your caregiving relationships. We sat down with Aaron so we could chat first about the distinction between hospice and palliative care.
AARON: Today, the one time that I see palliative kind of used on its own is more about what’s happening on the medical side of things. So when there is a palliative diagnosis, there’s usually some sort of prognosis that’s given of that you have this many months or this many years left to live. And I guess there’s a focus on managing symptoms as best as one can during this time. There may still be some curative measures that are attempted. But then, when it comes to hospice, I guess traditionally that was often reserved more to perhaps the last weeks of life and some people may think more of hospice being limited to like, a residential setting. But I think, yeah, there’s been a lot of evolution where we now have the term hospice palliative care being used kind of together like that. And that now extending to a much longer period of time. So once that palliative diagnosis is there, then people often becoming eligible for hospice services or or, hospice palliative care, which no longer just needs to happen in a residential facility in the final weeks, but can happen a year away from death, and can happen at home in the community and can include more supportive services. And then definitely hospice, I would say is what’s bringing in a lot more of the emotional, social and spiritual aspects of care and not just looking strictly at the pain and symptom management through conventional medical means.
BILL: Sure. In which I differentiate the palliative from the hospice is that as you said, there’s still a curative hope with palliative, that perhaps the disease or whatever it is can be postponed or alleviated in some way. And that there is, what I call a spiritual bridge that gets crossed, where the curative no longer is a reality. But my question here is about the kind of experience people have of the word hospice. Because often they have a fear about, if I’m going to the hospice, that means I will now die immediately. Have you had that experience of people kind of resisting?
AARON: Yeah, definitely. I think even with my role here at Family Caregivers of BC, you know, speaking with some family members that have just found out that their loved one, you know, has a terminal illness. And when I make the suggestion of you may want to consider reaching out to a hospice right away, they think oh, we’re not there yet, but the reality is that, yeah, hospice is often about bringing more meaning to the time that’s left. and that can exist in many different ways. It’s not about, you know, being confined to a bed in a residence. It’s about what sort of services and what sort of companionship and community can you build around you in this last, just these last months or this last year to make the time as meaningful as possible.
BILL: Yeah, that’s a very interesting distinction. I like that, that the hospice experience is about meaning making now and maybe we can chat a little bit more, detail about it, so what does that mean?
AARON: You know, a big thing today is really honouring the fact that death doesn’t have to be something that’s hidden away in a bedroom or that needs to be in a hospital or in a residential facility. It can be at home and the person that’s dying can be celebrated while they’re still alive. And they can be really in the middle of things. It invites families and the care recipient to come together and use that as a time for finding meaning, for doing reflective exercises. You know, there’s things like doing life review and legacy work, creative exercises to kind of reflect on one’s life and what has been meaningful to that person in their life and how do they want to capture that in a way that their family can appreciate going forward. And family members can be a part of this as well.
BILL: I work with this program with Family Caregivers. It’s a journal writing process. And the author of the process itself had a fascinating almost a motto, about caregiving, that while death ends a life, it never ends a relationship. So that as a palliative care hospice connection gets made, a lot of times the caregiver encounters their own mortality and the relationship with their care recipient. Let’s talk a little bit about that. When you cross that bridge that now we are in the meaning process of the end of one’s life. Any household hints about how, as I sign up for hospice and get the palliative care treatment, how does that impact the caregiver to begin to understand that I’m on this trip with my care recipient?
AARON: Oftentimes through the health authority, there will be a palliative care interdisciplinary team that you will be connected with. So you’ll have nursing, ah, a doctor, physiotherapist, occupational therapists, perhaps a nutritionist. These type of people that can come to the home, and the home care support that the care recipient needs in terms of help with their activities of daily living, with bathing and that type of thing. So, you know, you can expect those supports to become available at varying degrees depending on where they are on their palliative trajectory and yeah, I just really strongly encourage family caregivers, to ensure that they’re a part of that team, so that the health authority team, actively engage the family caregiver in meetings and care plan review and that type of thing. But this is something that we always encourage family caregivers to do, is to make sure they’re a part of those conversations, so that they know what’s going on. Because they are the ones that are there on the ground all the time and they really know their loved one or their care recipient best I think it’s really important that they recognize that that’s an opportunity for them to have their voice, in that discussion.
BILL– When you’re a part of these conversations and a part of that team, you begin to understand that in both the palliative care process as well as the hospice experience, they’re deeply connected through your own fears about the meaning of life – and the responsibility you have for enabling your care recipient to move through this process.
Less is more when it comes to connecting with and, um, meeting these apprehensive feelings. Even as you are listening to this podcast, simply stop for a moment and be with the natural flow of your breath, observing your breath for even 30 seconds. Every little break you can do to try and coax yourself back into being a little more present and a little more still, that makes you more available for yourself and more available for your care recipient.
Part of Aaron’s role at Family Caregivers of BC is to recognize when the caregiver starts to cross the bridge from palliative care into hospice. This shift in thinking requires the caregiver to abandon the curative thing now and work toward meaning, which is delicate and hard to do. This requires the courage to invite people into this very private space, this very intimate space of not only some of the physicality that we’re engaged in, looking after your care recipient, but the spiritual nature of it, that there are relationship issues here that we are treading on very lightly. And Erin helps facilitate this process. And yet it’s the courage to ask, to have these conversations is what’s. Important.
AARON: You know, and sometimes just opening that side of yourself and what you’re experiencing, to be able to have that conversation with someone like one of our staff here with the caregiver support line that’s part of what we’re here for. We’re here to hear your experience. We’re here to be present with what you’re going through
BILL: Sure, not judge it.
AARON: And not judge it and you know, validate that this is hard and that this is a lot, but that we’re here to stand by you as you go through it. I don’t think that anyone can do it alone. not only is it a lot, emotionally, but just the physical demands, often the 24 hours care that needs to be there, especially later on, in, the illness, help is needed. And so just, we want to make sure that you do have the supports that are available to you. We want to make sure that you are connected with the health authority and that you’re receiving care at home through the health authority. And if that’s not enough, we want to make you aware of what other options are there, you know, there’s other, initiatives, such know, you know, there’s Better at Home, which is delivered through United Way that offers a lot of free or subsidized supports for seniors, you know, help with shopping or going to appointments, things like that. These are the types of extra services that we want to make sure family caregivers are aware of. We want to make sure that you have the financial supports that you may be eligible for if you need to step away from work. We want to make sure you know, whether there’s certain EI benefits that support caregivers for periods of time, all of these types of things. And, yeah, oftentimes we do encourage, uh, caregivers to find someone that can support them specifically at an emotional level. So that may mean, uh, having some counseling support, which is nothing to be ashamed of, and it’s something that can allow them to lighten their emotional burden to some degree, to be able to continue to provide for their care recipients. So all of these things are not signs of failure. They’re signs of you taking time for yourself so that you are more available to support the person you care about. You know, we always promote the peer support groups that we have at family caregivers. Ours aren’t necessarily focused on end of life, but definitely a lot of people are experiencing significant illness and may have palliative prognoses that do attend our group. So there are groups that we offer here, but also I definitely recommend exploring what’s available through local hospices that may be near you, connecting with. They may have a social worker on staff, or they may have their own counsellors and just connecting with that avenue to see what services they can support you with.
BILL: So are there any other sort of meaning making activities that come to your mind as we’re in hospice now, for example, of the sort of things that are not invasive, but enable, a communication between me and my care recipient, in spite of maybe some, Dementia or Alzheimer’s, Parkinson’s, whatever that enables me to stay in the room.
AARON: Yeah, I think it’s going to depend on the scenario and the level of engagement and the level of cognition that’s still present. for those that are still able, I did briefly mention before, you know, doing things like Life Review and Legacy Work. So Life Review could be maybe journaling their stories, some of their most meaningful experiences from their life, things that they want to recount, and Legacy Work, that could be something as simple as making a scrapbook together, or finding anything that’s kind of most meaningful for the care recipient and transforming that into some sort of creative project. It can be as simple as they are able, if it’s just recording their story, or is it, uh, you know, collecting Grandma’s favourite recipes and making a book out of that. Situations where maybe they are a bit more advanced with their illness and not able to engage in those same ways, perhaps then you can be the one that’s sharing the stories to them.
Or in the case of Dementia, I keep thinking back to this study that was done where they showed that people with very advanced Dementia, if you played music for them, that was the music from their youth, from their 20s, that sometimes it would actually awaken them out of the depths of their Dementia and they would become more animated again. Little things like that, that can be quite meaningful, and I think it’s worth looking at both sides of the picture. So we have, you know, what are the meaning making activities that we’re focusing more on the care recipient, but also perhaps more so later on. What are the activities that are going to be helpful for the caregivers, for the family members, the friends? Maybe when we’re getting to the time of death, there’s other things that might come in know, maybe certain rituals, things like bathing the body, things to help you kind of integrate the experience.
BILL: Are there any other things, in terms of the role you have here at Family Caregivers of British Columbia, Aaron, that you would advise for the caregivers who are listening, about the resources that are available here you’ve mentioned some of them so far?
AARON: You know, the one thing you mentioned, there Dementia. So, just as an, you know, here on Vancouver Island Island Health, they have put together an excellent video series, for caregivers, “Caring for People with Dementia”, that kind of walks you through all the things to expect along the way. So resources like that are super helpful. But, yeah, getting more into hospice related things, aside from connecting with a local hospice, there’s also really great, online resources. There’s virtualhospice.ca, which is an excellent resource for exploring all sorts of topics related to caring for people at end-of-life. They have kind of a partner website, livingmyculture.ca, which explores indigenous and multicultural perspectives around end-of-life and then, yeah, there’s some great books out there. I know one that we have here in the office at Family Caregivers of BC, we have a caregiver’s guide, a handbook about end-of-life care. And then for those that want to maybe explore, some more, even more holistic approaches, I did briefly mention earlier, like The End of Life Doula model, there are some great books on that topic. One, in particular that I think really moved me when, I got into this work. There’s one called “Caring for the Dying: The Doula Approach to a Meaningful Death”. That was a very deeply moving book that kind of moves you through from creating a care plan, to doing legacy work, to you know, holding vigil, to supporting family through grief, all these types of things, super helpful to learn from the experience of people that have done this, in some cases many times.
BILL: The book that Aaron mentioned, is by author Henry Fersko-Weiss. In 2020, a new edition was published with the updated title “Finding Peace at the End of Life: A Death Doula’s Guide for Families and Caregivers”. As always, all the resources mentioned in our podcast episodes, including the two books, are linked in our show notes, which you can find on your podcast listening app or on our website.
BILL: As we come to a close with Aaron, and reflect on caregiving as a society, how can we develop a more healthy relationship with death and dying?
AARON: These are things that in many traditional cultures would have existed as an intrinsic part of the culture, as an intrinsic part of the family system. You would have had extended families living together where members of the family would be able to care for, the elders, this type of thing. But, yeah, our society is different now we typically, all, adults in the household often have to work full time jobs and don’t have that time to provide that care. To some degree, we’ve lost touch, with that natural kind of tradition, of supporting the dying. So I think we’ve lost touch as well, with the normalcy of it. We need to keep that conversation going. We need to be comfortable with using the word death ah, talking about dying and not make it something hush hush that needs to happen behind closed doors. We need to make it visible, and we need to celebrate the people that are dying. We don’t need to wait until their funeral to have a celebration of life. Let’s have it while they’re still alive. Let’s have it every day for their last few months. there’s this line that I find myself saying lately, but I feel like it’s very to the point, which is, let’s recognize that it doesn’t only take a village to raise a child, but it takes a village to care for people that are sick and people that are dying.
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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.
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