Latest / Talking FACS / Kick Kentucky Cancer: Caring for those You Love

Transcript

Kick Kentucky Cancer: Caring for those You Love · Talking FACS

• 0:01
  Welcome to Talking FACS, what you need to know about family,
• 0:04
  food, finance, and fitness.
• 0:07
  This nationally recognized, award-winning podcast is hosted by the University
• 0:11
  of Kentucky Family and Consumer Sciences Extension Program.
• 0:16
  Our educators share research knowledge with individuals, families,
• 0:20
  and communities to improve quality of life.
• 0:24
  Hello and welcome to Talking FACS, what you need to know about family,
• 0:28
  food, finance, and fitness.
• 0:30
  I am your host, Mindy McCulley, Extension Specialist for Instructional Support
• 0:34
  with Family and Consumer Sciences Extension at the University of Kentucky.
• 0:38
  We are housed in the Martin Gatton College of Agriculture, Food, and Environment.
• 0:42
  According to the American Cancer Society, for the first time ever,
• 0:48
  there will be more than 2 million new cancer diagnoses this year.
• 0:55
  Colorectal cancer is the number one cancer in men and number two cancer in women.
• 1:03
  And while cancer risk does increase with age, it appears that cancer patients are getting younger.
• 1:11
  In Kentucky, cancer does continue to be the second leading cause of death. My guest today, Dr.
• 1:22
  Amy Kostelic, Extension Specialist for Adult Development and Aging.
• 1:28
  Along with her colleagues, Dr.
• 1:30
  Heather Norman-Burgdolf, Dr. Kerri Ashurst, and Dr.
• 1:35
  Natalie Jones, has developed a program called Kick Kentucky Cancer,
• 1:41
  which deals with this very specific topic.
• 1:45
  So we're going to dive right in and discuss caring for those you love. Welcome, Amy.
• 1:51
  Yeah, thank you. Thanks, Mindy, for having me. And as you shared,
• 1:56
  each year, cancer affects millions of people in Kentucky and across the world
• 2:02
  as a patient, as a caregiver, as a family member, as a friend.
• 2:06
  So I think it's important to remember that, that if it hasn't touched you directly,
• 2:12
  it it probably has indirectly in some way, probably will by the end of your lifetime.
• 2:17
  And so because of that, we did create a program under the leadership of Dr.
• 2:23
  Heather Norman-Burgdolf, Kick Kentucky Cancer.
• 2:26
  The premise behind that was it's a multi-lesson program where we talk about
• 2:29
  just some of the definitions of cancer and some of the basic cancer lingo.
• 2:34
  We've got a lesson on on cancer and nutrition, what you should do to help make yourself healthier.
• 2:41
  We've got a lesson on mental health and cancer. We also have a lesson on etiquette.
• 2:47
  What do you say? And we've even recorded a podcast on that one as well.
• 2:50
  What do you say? What do you do around someone who's living with cancer?
• 2:54
  And then we've got this topic as well, caregiving, caregiving for cancer.
• 2:58
  That's a big job and sometimes can be a little bit different.
• 3:01
  Different types of caregiving require different needs and education and such.
• 3:08
  And so we hoped that this lesson, that this podcast could give a little insight
• 3:12
  onto the day in the life of a a cancer caregiver.
• 3:16
  If my loved one has just been diagnosed with cancer, what do I do now?
• 3:21
  You know, I think that the simple answer and the first answer that would come
• 3:25
  to my mind is that as a cancer caregiver,
• 3:29
  now that you're entering that role is to really learn about the diagnosis and
• 3:34
  to really understand the disease process.
• 3:37
  And that's going to help you get an idea of what lies ahead.
• 3:40
  And it gives an idea for the patient
• 3:42
  as well, of course, but I'm talking specifically for you as a caregiver.
• 3:47
  What are we in for? What's coming down the road? So the American Cancer Society
• 3:52
  has a lot of resources available. They're online.
• 3:55
  We'll post some. And then locally too, we're blessed in the state of Kentucky
• 3:58
  to have the Markey Cancer Center out of the University of Kentucky.
• 4:01
  And even a variety of the area agencies on aging, health departments have different
• 4:06
  cancer-related programs, materials, support resources, and such.
• 4:11
  So there's a lot of information out there that's easy at our fingertips,
• 4:15
  and you can always contact our extension offices as well in the counties to get more information,
• 4:20
  whether it's on our specific programs like the Kentucky Cancer or supplemental
• 4:27
  programs just on nutrition, financing,
• 4:30
  housing, how to be safe, those kinds of things that will relate to caregiving issues.
• 4:35
  We often find that people are intimidated about asking questions of their doctor.
• 4:40
  So what are some of the things that we recommend that people should ask?
• 4:46
  Their doctor when they've been diagnosed with cancer? Great question.
• 4:49
  So again, according to the American Cancer Society, some of the first questions
• 4:53
  that you and the person living with cancer should ask your doctors and or the cancer team,
• 4:58
  there may be a variety of people that you're working with, but it's okay just
• 5:03
  to ask some of the simple questions and don't assume that you should know these answers.
• 5:08
  I mean, this is new territory for probably a lot of people.
• 5:12
  So to to ask the basics is okay. And people shouldn't feel silly or dumb or
• 5:18
  like they should know the answer.
• 5:19
  And even if you think you know the answer, ask it anyway.
• 5:22
  You can always learn from someone's response.
• 5:25
  And so again, the American Cancer Society suggests questions like,
• 5:29
  what kind of cancer is this?
• 5:31
  Where is it? Has it spread?
• 5:34
  Where did it start? What are my treatment options? And what do you recommend?
• 5:39
  What is the goal of treatment? How long will treatment last?
• 5:43
  What will it be like? Where will it be done? They recommend asking questions
• 5:47
  like, what sorts of side effects can I expect?
• 5:51
  How will treatment affect my everyday activities of daily living?
• 5:55
  And it's okay too to ask, what's the likely long-term outcome?
• 5:59
  And so again, those are just a few questions to get people started,
• 6:03
  but those are good questions to get people started as well. Wow.
• 6:06
  And some of those questions might have answers that you don't really want to
• 6:12
  hear, but it's really better to have the information than not.
• 6:17
  And I know good communication is so important. So just having all of the tools
• 6:21
  that you have available to you is going to make this process maybe not necessarily easier,
• 6:28
  but at least it will give you everything in your toolbox that you can deal with.
• 6:32
  Yeah. And I think that's a good way to look at it. How do you build that toolbox.
• 6:36
  And one of those ways is through educating yourself and knowing what to expect.
• 6:40
  And so sometimes it may be things you don't want to hear, but does that allow
• 6:44
  you to put a different tool into that box? It probably will.
• 6:49
  And so I think if you kind of think about it that way, I've got to build that
• 6:52
  toolbox so that I'm prepared.
• 6:54
  And it may be too that the person living with the cancer isn't maybe ready to
• 6:59
  do that or talk about that.
• 7:00
  You may know as a caregiver, I'm going to have to do that.
• 7:03
  I'm going to have to carry that weight and build those tools so that we as a
• 7:09
  team will be ready for when that time comes.
• 7:11
  Well, and I do think that you're right, that there is a team, the medical care team.
• 7:16
  Might consist of several different doctors or pharmacists or that sort of thing.
• 7:21
  But then also the caregiving team might consist of, you know,
• 7:26
  a spouse, a parent, a child.
• 7:28
  And so having everybody have the same toolbox is going to be beneficial.
• 7:33
  Yeah. And to go off of that kind of analogy and just to further reinforce the
• 7:38
  importance of a team, sure, you might have your care team of,
• 7:41
  of healthcare providers.
• 7:43
  But I think it's also a good idea in any caregiving setting to have a caregiving
• 7:49
  team of support, like you said, with your partners.
• 7:54
  Friends, family, the church community, the neighborhood, whoever you think fits on that team.
• 7:59
  Because even as the primary cancer caregiver, you can't do it alone.
• 8:04
  It's a really big job and it's a lot of weight on on your shoulders.
• 8:08
  And so to be the best that you can be at caregiving to help that person you care about,
• 8:13
  it's really important that you have a team that's all inclusive and that the
• 8:19
  person living with cancer is a team member as well so that their voice matters,
• 8:25
  so that their wishes are known and that sort of thing.
• 8:29
  So again, the cancer team in general should always include the patient,
• 8:33
  patient, all the healthcare providers are professionals, the family,
• 8:36
  the friends, but you as the primary caregiver may be the one who's kind of coordinating all of that.
• 8:42
  You know, so what is it that you can expect to do as that primary caregiver?
• 8:47
  Again, I keep referencing the American Cancer Society, but again,
• 8:50
  it's because they've got so many great references.
• 8:52
  We want you to look on their pages as well because they're certainly the experts.
• 8:57
  But again, they're going to say as a primary caregiver, like Mindy and I already
• 9:00
  talked about, you've got to educate yourself, but you also have to educate and
• 9:04
  inform the rest of the team because they may not know and you can't make assumptions
• 9:09
  as to what they know or don't know.
• 9:12
  So you've got to learn about the diagnosis again, the treatment options,
• 9:15
  the side effects, and just the proper support materials that the team can pitch in with.
• 9:21
  You've got to be able to find healthcare providers that you trust.
• 9:25
  And again, that might be you and the person living with cancer working together.
• 9:29
  It may be getting second opinions, you know, those sorts of things.
• 9:33
  You've got to know how to contact those healthcare providers and to have an
• 9:37
  opportunity for communication with them.
• 9:40
  So it may be even looking at things like putting in powers of attorney for health.
• 9:45
  Sure. so that you have that ability to talk and communicate with people,
• 9:49
  especially if there are times that the person living with cancer can't do that for himself or herself.
• 9:55
  You're going to maybe coordinate patient care. And that may be from things like
• 10:00
  keeping records of their medical history, their medications,
• 10:03
  their test exams, results.
• 10:05
  Making sure different providers are communicating with other providers,
• 10:09
  looking at new symptoms and kind of monitoring those things so that you're able to tell a doctor.
• 10:14
  I always say to people, even if you're healthy and you go to a doctor,
• 10:18
  it's good to bring someone with you because another and a second set of ears
• 10:23
  can hear things differently than you can.
• 10:25
  They can remember things maybe better or differently than you can,
• 10:28
  or they may even think to ask questions that you may not think to ask.
• 10:31
  And I say that on a good day, on a healthy day, on a regular checkup day.
• 10:35
  So think about that. If you've been taxed with an illness, a treatment,
• 10:39
  you're on medication, it can be really overwhelming overwhelming to be at an
• 10:43
  appointment by yourself and then to try to remember all these things.
• 10:47
  And you may miss a question or you may not hear something quite right.
• 10:50
  And then you go home and everyone's asking you all these questions and you think,
• 10:53
  I don't remember all the answers to that, or I didn't think to ask that.
• 10:57
  So I do think it's a good role for that primary caregiver to try to go to those
• 11:01
  appointments and help coordinate some of that conversation as well.
• 11:05
  And really kind of taking some of the burden off the person living with cancer.
• 11:09
  So you might oversee paperwork just just so that they don't have to deal with
• 11:12
  that. You know, they're,
• 11:13
  What they need to deal with is their fight. Let you be the one who's going to
• 11:17
  deal with all the other stuff, the communication, the paperwork,
• 11:20
  the appointments, how to get someone to and from an appointment,
• 11:23
  coordinating schedules.
• 11:24
  So really, the primary caregiver has a big job, for sure.
• 11:28
  The primary caregiver is often, like you alluded to, it's a spouse,
• 11:33
  it's a partner, it's a parent, an adult child, family member, close friend.
• 11:36
  But what they are, regardless of your title, what you are is a lifeline.
• 11:40
  And so I think you really have to look at that, whether you've been trained.
• 11:44
  Most of us have not been trained in caregiving. We've taken a variety of classes
• 11:49
  over reading, writing, and arithmetic, but we don't typically take a class on caregiving.
• 11:54
  So we don't really know what we're in for.
• 11:57
  However, all of a sudden, you're in this role where you're providing ongoing
• 12:01
  care, support, encouragement.
• 12:04
  You might be someone's line to survival. survival
• 12:07
  and so what you as a lifeline looks like is
• 12:09
  going to be really different too and so it could be that
• 12:12
  you're grocery shopping you're preparing meals you're
• 12:15
  doing housekeeping and laundry you're paying bills
• 12:18
  you're caring for kids administering medications
• 12:21
  you might be transferring someone to and from wheelchairs and beds and helping
• 12:25
  someone in a bathroom i mean it's amazing what we learn on the job but again
• 12:29
  when you start to build that team that team can help you with some of those
• 12:33
  different lifeline sort of jobs that may come up in cancer caregiving?
• 12:39
  I mean, cancer caregiving is tough. It's rough.
• 12:42
  I guess there are sunny days because you're spending time with a loved one.
• 12:49
  And so there is a little bit of sunshine and rainbow, but it's not going to
• 12:54
  be all sunshine and rainbows.
• 12:56
  It's also a way that you can show a love that you never ever knew that you would be able to do.
• 13:01
  It is an opportunity to love in a way that you never know you can, maybe.
• 13:08
  Yeah. And there's some emotion with that. I know Mindy's lost her mom.
• 13:11
  I've lost my dad. And the same thing, we were able to provide care for him in
• 13:15
  a way that I never dreamed I would provide care for my father.
• 13:19
  But sometimes I don't like when we talk about caregiving in general,
• 13:25
  sometimes we skip over the sunshine days, like Mindy just said.
• 13:29
  So you might have that you're changing a depend or a bedpan day, and those are bad days.
• 13:34
  But the fact is, if you're in a loving relationship, or it's a loving opportunity,
• 13:40
  that there's a lot of silver lining in that too, that you can be the person
• 13:44
  providing that level of care and that level of support. court.
• 13:48
  In your own way, you can sort of cherish those moments because it is out of
• 13:54
  love. It is out of someone.
• 13:55
  And you think, I wouldn't want
• 13:57
  someone else to do this because this is my person and I love this person.
• 14:00
  So again, I think Mindy's right. We don't talk a lot about the sunshiny days.
• 14:04
  And it's not to say that the burden isn't there. It's hard.
• 14:08
  It is hard. I remember with my own dad, he started having some night terrors.
• 14:12
  And my mom, who never left his side, one night came down to me and she was beat.
• 14:18
  She was exhausted. She hadn't slept and she had stayed by his side and she felt
• 14:23
  so defeated that she couldn't do it.
• 14:26
  And I remember I hugged her and I said, I'm so glad you came down and woke me
• 14:30
  up because I'll sit by his side right now and hold his hand and listen to him.
• 14:35
  And I was grateful for that and those opportunities.
• 14:40
  So it's not to say that it doesn't come with burden. It does.
• 14:43
  No matter how much love is in your heart for somebody, it is hard at times and
• 14:48
  you don't sleep and there's stress and there's anxiety involved and there's
• 14:52
  anticipated loss potentially involved.
• 14:55
  It is certainly not an easy role. But again, I think that reinforces the importance
• 15:00
  of a team, reinforces the decision that it's okay to take a break.
• 15:05
  And sometimes we're going to have to force that break on people.
• 15:08
  And it's so important to choose our words carefully, to think before we speak and to to be empathetic.
• 15:14
  And I think that that is so important, not only with the person who is living
• 15:19
  with cancer, but also with our other caregivers, because we don't have any idea
• 15:23
  how they are processing.
• 15:25
  Every person processes differently. And so we need to really think about our
• 15:30
  own feelings and our own emotions and be respectful that everyone else is doing the same thing.
• 15:36
  And so thinking about how they're doing it and how we're doing it,
• 15:40
  how we're all living through through this together and just being,
• 15:44
  giving grace, I guess, all around,
• 15:46
  whether it's to the person who's living with cancer or to our fellow caregivers.
• 15:53
  Amy, thank you for joining us today. I am grateful for the time that we have
• 15:57
  spent together because while my caregiving role was a long,
• 16:01
  long time ago, and it's been a few years since you had that caregiving role
• 16:04
  too, I know that the experiences are still fresh in our minds, aren't they?
• 16:09
  Very much so. Yeah. And I would not do it over any different.
• 16:15
  You know, I am so grateful for that opportunity to be with my dad and to have held his hand.
• 16:21
  And I know, yeah, I know the only thing I would like to change is for it not
• 16:27
  to have happened, right?
• 16:28
  We would like to still have them here with us, but be that as it may, we can't have it.
• 16:34
  So if you are just joining us, you have tuned into Talking FACS.
• 16:39
  And we are available on all major podcast providers.
• 16:44
  Thank you for listening to Talking FACS. We deliver programs focusing on nutrition,
• 16:50
  health, resource management, family development, and civic engagement.
• 16:54
  If you enjoyed today's podcast, have a question or a show topic idea,
• 16:59
  leave a like and a comment on Facebook at UKFCSEXT or send us an email at UKFCSEXT at uky.edu.
• 17:11
  Visit us online at fcs.uky.edu to learn more about the University of Kentucky
• 17:18
  Family and Consumer Sciences Extension Program or contact your local extension
• 17:22
  agent for Family and Consumer Sciences.
• 17:25
  We build strong families. We build Kentucky. It starts with a.
• 17:29
  Music.