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Navigating the Complexities of Hospice Care · Talking FACS

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  Welcome to Talking FACS, what you need to know about family,
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  food, finance, and fitness.
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  This nationally recognized, award-winning podcast is hosted by the University
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  of Kentucky Family and Consumer Sciences Extension Program.
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  Our educators share research knowledge with individuals, families,
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  and communities to improve quality of life.
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  Hello and welcome to Talking FACS. We share the news you need to strengthen
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  your family, your community, and your state.
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  I am your host, Mindy McCulley, Extension Specialist for Instructional Support
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  with Family and Consumer Sciences Extension at the University of Kentucky.
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  We are housed in the Martin-Gatton College of Agriculture, Food, and Environment.
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  FCS spends much of our time talking about quality of life issues.
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  And even as we look towards our end-of-life journey, there are many resources
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  that families and patients can access to ease this transition.
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  Brittany Thompson, who is the Bluegrass Care Navigator Provider Liaison, and Dr.
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  Amy Kostelic our Associate Extension Professor for Adult Development and Aging,
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  have joined me again to further explore the intricacies of hospice care.
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  And today, we're going to specifically focus on some of the challenges and barriers
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  that people might experience as they are entering hospice care.
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  So, Brittany, what are some of the biggest challenges that people face when
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  they start their hospice journey?
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  Sure. Hospice care requires quite the skill of myth-busting,
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  I've found. There's some misconceptions out there about what we do that kind
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  of start to feed a stigma around our services a bit.
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  And then there's just some really complex pieces of the human experience that
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  are happening when we step in to provide care.
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  So I would just, goals of care and hope shift at end of life.
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  They change, right? We are no longer trying to fix the root cause of something painful.
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  We are starting to put some Band-Aids on it so that we can really experience the rest of our life.
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  We are focusing on the quality of our life. We are not focusing on fixing everything.
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  That's a change as a human being in general in a mindset.
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  So imagine not only as the person walking through end of life, but also your family.
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  Changing the conversation, the mental mindset around new goals of care is really tough.
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  And so I never want to sound like that's not the biggest piece that we have
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  to start by stepping over, right?
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  Some of that self-awareness and some of that just understanding where we are in the journey.
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  And then you're walking into maybe as a family member being a caregiver.
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  And that's a new identity to take on, right?
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  That's a skill set that I'm not sure we all feel that we have.
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  Even, you know, if you're a mother or a father, caregiving for a child is very
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  different than caregiving for an older parent or another loved one.
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  So now we have a whole new identity and we feel sometimes a little bit incompetent
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  and a little bit lack of skills, right? Just we need to be equipped with skills.
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  So we're walking through that. And then to add the layer of our emotional experience,
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  we might all be walking through different parts of the grief journey.
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  Right? I don't know about you, families are, I'm sure your family is just so simple.
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  We all have such simple families, right? They're not complicated or layered at all.
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  But I can tell you, even from personal experience, when I look back on the passing
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  of my own grandfather a couple of years ago and where everybody was different
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  at a different spot in the process,
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  I can point to times where I was already angry that he was going to pass away.
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  My mom was already bargaining with the Lord. You know, so when you start to
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  think about anticipatory grief, what we say happens before the passing of your
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  loved one even, now we've got a whole new layer to the experience, right?
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  And a final piece that I think is really that we do a bad job,
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  again, of talking about not only is that transition, that dying process,
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  but financially, what's the burden of that on our families, right?
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  How much financial burden can we continue to endure and how much support do
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  we need there too to also be able to give our loved one the best possible care and end of life?
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  So there's a lot of questions as a human that I wanted to make sure we put on
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  the table first in terms of some challenges and some barriers.
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  Amy, don't we as Cooperative Extension have some resources that are very beneficial to the caregiver?
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  We have a series in Family Consumer Sciences Extension called Living with Loss.
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  And part of that series has a unit on self-care, self-care for caregivers.
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  And I was going to jump in and kind of highlight something that Brittany had said.
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  We don't do a lot of training for caregiving.
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  We don't do a lot of training for end-of-life care when it comes to the family members.
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  And so I do think it's important that those challenges are exasperated sometimes
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  by emotions, too, because you may have someone who you care about who's dying.
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  And so you're sad and you're grief-stricken, but you're also trying to still
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  balance your family or you're still trying to balance a job.
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  And dying doesn't always just happen overnight. It can be a process,
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  but it can be a lengthy process at times.
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  And so there are, in addition to physical care that a caregiver may be providing
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  at end of life, there's also that mental and emotional care for yourself,
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  for the person that you care about or caring for.
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  Like Brittany said, there's these spiritual needs and then a lot of just the
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  practical tasks. And so it's important that as a caregiver, you have a team
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  to help you get through this.
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  It's important that you also take that time to care for yourself during this
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  process and recognize what you're feeling and how you're feeling.
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  I think it's also what makes this conversation really special is that we kind
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  of are able to fulfill our mission through partnerships and conversations like
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  this because we will pull those resources in for our caregivers,
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  as well as you can pull some of the good things that we're doing into your support
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  and resources for caregivers.
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  So it's encouraging to always to have these conversations where we know what's
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  on the table so we can make sure families get what they need to address their
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  needs. So we might be physically in the home kind of demonstrating how to roll
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  somebody over in the bed or change a dressing.
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  But there's a big self-care component that we don't talk about.
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  Respite is a big component that we should talk a little bit to as well.
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  Are you ever going to get a break as a caregiver?
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  If you have hospice care, you definitely are going to get that type of engagement.
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  And then, you know, just finding other resources to, yes, take care of yourself
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  100%. And Brittany, I think hospice does a really nice job of helping families
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  feel okay about taking those breaks and recognizing why that break is needed.
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  Because sometimes there's a lot of guilt that you want to be vigilant and you
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  want to be by that person's side.
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  But sometimes that's not always helpful either.
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  Someone gave me the analogy one time of when you have a dog on a leash and the
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  dog is walking next to your side. Well, every emotion, every tension,
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  every stress goes right down from, you know, your neck and shoulders and arm
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  through that leash into the dog.
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  And the dog can feel that and sense what you're going through.
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  And I don't know if there's truth to that, Brittany, but that analogy has stuck
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  with me that the person you love and care about can also, even at end of life,
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  sense your stress or your worry or your concern or your sadness.
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  And so sometimes taking that break, you need that.
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  And so the person you love or the patient might need it too for a small time.
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  Absolutely. You spoke to it, again, occupational hazard of working in hospice.
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  I read books about death and dying and communication and end of life.
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  And that is where we get that piece that comfort is not just a pill that we take.
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  It is, you know, having conversations with our loved ones, working through any
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  sort of interpersonal discomfort.
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  And sometimes I just would, I would put this in front of our caregivers and
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  challenge them to, like you said, what's the benefits of self-care?
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  Well, the benefit part of it is that your loved one isn't absorbing some of
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  that as well, that they're able to find the comfort and the peace that they need to pass.
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  Well, and I was touched by something that you said earlier that you as the caregiver
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  might not expect to find yourself caring for your parent in the way that you are expected to do.
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  And it reminded me of a time when I was caring for my mom and she said to me,
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  but you were never supposed to do this for me.
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  And it makes me think that sometimes being cared for in that way is just as
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  hard for the patient as for the caregiver.
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  And so we have to remember to be careful and to be cognizant of that need to
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  let the person who's being cared for know that we want to be there.
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  We want to care for them and that it is a gift to us to be able to do that care.
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  It was for me to be able to care for my mom in that way.
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  It is a gift to be a caregiver, but I just imagine there's a lot of questions
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  that come along with accepting that gift.
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  And to your point, I think I'm sure this will go out to people that culturally
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  get what I'm saying, but I come from a Southern family as well,
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  where we want to appear that we have it all together, right?
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  It's hard for us to accept that help.
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  It's also hard for us to be a burden on others.
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  And I think that's what you're speaking to, a really beautiful piece of that,
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  Mindy, is that we have to take care of ourselves in order to really effectively
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  and intentionally take care of others.
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  And that's what we try to work with our caregivers to do.
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  You know, we try to have good conversations about that shift in goals of care
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  with them. So they're also mentally on the same page that we are.
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  We have our chaplain check-in to monitor for their anticipatory grief so that
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  we can start to offer services as soon as possible if that layer becomes a lot to handle.
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  And again, like you said, you're busy being a caregiver. You've taken on a new role, a new identity.
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  And so to be experiencing your own complex emotions, we need to wrap around you as much as possible.
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  And we do that through the team that we discussed in our last conversation,
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  our interdisciplinary team.
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  We have that chaplain accessible to you. We have your social worker accessible to you.
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  And then we have our team accessible to you on a 24-7 basis.
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  So we're not going to come in and care gift for your loved one.
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  I love to make sure that we, again, lots of, I'm a myth buster, okay?
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  So I want to just make sure I don't set any bad precedents of our services.
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  We are not going to be there.
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  24-7 in your home, we are going to be over the phone though.
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  And we are going to be leaving behind tools and education for you to look back
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  on so that you feel confident during your caregiving time when we might not be there physically.
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  And again, our 24-7 phone support, I think, is one of the, I don't know about
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  you, but that gives me a lot of comfort.
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  I don't necessarily need to know that somebody is going to be in my house all
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  the time, but I need to know that they're accessible to me.
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  And that is what we try to do a really good job of doing. And I think that's
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  a perfect way to wrap this up because hospice is available 24-7 whenever the care is needed.
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  Absolutely. Thank you for your time. Thank you.
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  If you are just tuning in, you're listening to Talking FACS and you can find
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  us wherever you listen to your favorite podcast.
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  Thank you for listening to Talking FACS. We deliver programs focusing on nutrition,
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  health, resource management, family development, and civic engagement.
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  Visit us online at fcs.uky.edu to learn more about the University of Kentucky
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  Family and Consumer Sciences Extension Program or contact your local Extension
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  agent for Family and Consumer Sciences.
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  We build strong families. We build Kentucky. It starts with us.
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  Music.