March 24, 2026
The Power of Presence: How End-of-Life Doulas Support Families with Karon Keller McGovern
Send us Fan Mail In this heartfelt interview, Karen McGovern shares her personal and professional journey caring for loved ones at the end of life, highlighting the importance of compassion, preparation, and presence. Discover insights into end-of-life care, the role of doulas, and how to navigate grief and caregiving with grace. About Karon Keller McGovern Certified End of Life Doula (2022) National Accreditation (2026) Reiki Master (2016) and Reverend - Celebrations of Life & Weddings (...
In this heartfelt interview, Karen McGovern shares her personal and professional journey caring for loved ones at the end of life, highlighting the importance of compassion, preparation, and presence. Discover insights into end-of-life care, the role of doulas, and how to navigate grief and caregiving with grace.
About Karon Keller McGovern
Certified End of Life Doula (2022) National Accreditation (2026)
Reiki Master (2016) and Reverend - Celebrations of Life &
Weddings (2016)
Business: Loving Embrace – Transition Service Guiding the Client
and Family through the final Transition (2025)
Executive Assistant: 50+ years small businesses, churches,
University, and major corporations
End of Life Doula Training by Suzanne B. O’Brien R.N. (Surgical,
Oncology, and Hospice)
Karon saw a real need to change how end-of-life patients were
not receiving the best care with our medical system
Professional Goals:
1) Love and care for others during the final transition of life
2) Educate people on ways to make dying less chaotic and
look at death in a new light
Professional and Personal accomplishments
- Star Achievement
- Going to Waveland MS for two weeks right after Katrina
hit to help those in need where the hurricane landed
-Citizen Teacher (US STEM) during my career at Cisco Inc
Hobbies and personal interests:
- Crafting, reading, hiking, baking,
meeting new people and listening to others
stories/journeys in life
Chapters
00:00 Introduction to End-of-Life Care
05:21 Navigating Dementia and Family Dynamics
10:50 Becoming an End-of-Life Doula
Video on Ask Dr. Mia YouTube channel
Transcripts on www.miayangmd.com. Transcripts are automatically generated and may contain minor inaccuracies.
Email: ask@miayangmd.com
Opinions expressed are exclusive of Dr. Mia Yang and not reflective of her or guest speaker's employers or funders.
WEBVTT
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Thank you for joining this episode of Ask Dr.
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Mia.
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I am excited to talk to you all today with Karen McGovern.
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She is a certified end of life doula and has had personal experience caring for multiple family members.
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And I'm excited for our conversation today to really talk about what she has experienced both personally and professionally.
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navigating through the end of life journey.
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So welcome to the podcast, Karen.
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Thank you, Dr.
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Mia.
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It's a pleasure to be here.
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Thank you for joining.
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And just to start out with, I was hoping you can share with the listeners a little bit about who you have cared for and what that experience has been like, as well as who your family members are as people.
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Okay, thank you.
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um I have cared for uh several online virtual, so I can do virtual work as well as in person.
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um I do like being in person so that I can be there with the person.
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m But that is a challenging piece because you're trying to work with what the family's telling you because usually the patient or the client cannot.
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so...
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It took me a couple times to be able to get into that smoothly, but it is good to know in the end that everybody is pleased with having someone there that can, you know, kind of calm things down and talk things down when they get crazy.
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As far as so sorry.
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think I meant like the how who you have cared for personally, not professionally.
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Personally, I have helped with my uh father.
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He had cancer for two years and um he was about three to five years old when he passed and I was 13.
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My baby brother was five.
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uh And that was, uh it was challenging in so many ways because my mother at that point had an eighth grade education.
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She was learning to, you know, balance a checkbook, write a check, drive, and how do you raise six kids all of a sudden by yourself and you're 28 years old?
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um But we did it.
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um And mom and I took care of dad the best we could.
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And then um with the cancer getting worse, then he eventually went to the VA hospital.
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But watching what they go through is very tough.
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Even though I was there, I don't think I really grasped all of it until I got older because he wasn't able to always walk well or dress himself and things of that nature.
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So that was my first, I guess, really challenging experience.
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Others had died but hitting home when it's your parent.
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Oh yeah, I'd have been 11 when he first got sick.
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And then from there, there were family members.
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My father died in 1969.
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My great aunt or yeah, my great aunt died in the same year from breast cancer.
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My grandfather died in 1972 with emphysema and it just kind of kept rolling.
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So my family, we all have come to accept cancer is the biggest issue we have to deal with and it's not environmental.
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I'm sorry, it's not family, it's environmental.
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um So where we grew up, there was a refinery and an electric plant.
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Across the river was a nuclear plant.
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And then all of the herbicides, pesticides, everything we put in the ground that we didn't even know could cause issues.
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So uh a big majority of my family has died of cancer or had breast cancer or various other cancers.
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um My mom has had it.
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I've gone through that with her.
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and um I've gone through with my stepdad and I will call him dad going forward.
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um He had Alzheimer's and so that was a totally different experience to go through and I will say right now the one thing is I was a firefighter and a first responder and one of the first things you learn is that if it's a family member you must step back.
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And if you do not, you can be put on suspension.
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Because when you're working in these positions, it's absolutely difficult to remove yourself emotionally.
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You try to do what you know is right by all of the rules and laws, but it's so hard for that flip of, they're mine.
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Yeah, yeah, and that's kind of how I felt personally too.
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It's different.
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My mom died from ovarian cancer and, uh you know, being the daughter is definitely different from being the doctor.
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ah Professionally, I think I've given plenty of hard news to people, but it's a totally different experience when it's your own parent or your own family.
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And I think that we had that similar experience of when it's your own family, particularly for someone with dementia, it hits differently, uh more on an emotional level in addition to an intellectual level.
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But I think that advice from firefighting academy or first responder training is really useful to keep in mind that even if you are professionally doing this work as a caregiver, it's still different and you still need help.
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um Even if you know all the things to do, it's still different when it's your own family.
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Yeah.
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And how was it in terms of your dad, your mom's second husband in terms of his dementia?
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I think we noticed it early on, but I did verify things with mom.
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So um it really became uh serious in 2016 and um mom had to have open heart surgery.
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So we had to put him in a facility because there wasn't anybody else to help take care of him as brothers and sisters were all across the United States.
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So that doesn't help a lot.
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But, um and when she got out, you know, it had advanced and um in two years he was gone.
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But dealing with it, I think that one of the more difficult things for me, and again, because you're talking family, was watching, that wasn't necessarily always the easiest person to talk with, but now there was this violent, I call it, side to him.
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um And...
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You're trying to grasp that.
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How did this appear?
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What made this come out?
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um And there was a point where he pushed furniture up against the door to keep people out.
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He broke family pictures because he didn't know who they were and why they were in his room.
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Trying to feed him and dress for him and care for him was very challenging.
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There were a lot of issues at the nursing home over that.
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um And then, My mom called me and I went back to Illinois when things really started, you know, seemed to be going down quickly.
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And they allowed an eight month uh pregnant, they allowed a nurse who was eight months pregnant to take on my dad that day.
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And dad got violent and he knocked her down and hurt her.
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And so they automatically transferred him an hour away to a lockdown facility.
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They call them behavioral lockdowns for them.
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And in a week, he just started deteriorating.
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They brought him into the hospital after a hospital close to that location.
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And they did a series of tests that they should not have ever done.
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There was no reason for him in my opinion.
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I'm not a doctor, but it's my opinion.
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um And within two weeks, it was pretty much over because The doctor had told us that they could get the blood pressure kind of, or the blood sugar to balance, but he was going to come back every two weeks.
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It would not stay balanced.
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They weren't able to do that.
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And um it was at that.
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diabetes as well.
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Okay, that that was the sugar related to that.
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But yeah, yeah, he was not the same after that transfer to that uh lockdown facility and being sick.
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And I'm so sorry that happened.
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It sounded like your family did not get a choice as to whether he he had to be transferred.
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They just transferred him.
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They didn't even call us, Dr.
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Mia.
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They moved him an hour, a little over an hour away, and then called my mom and I.
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And we were shocked.
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And of course, like anybody, all you can do is react at that point as, okay, we've got to get everything together, all the paperwork and drive and get there.
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When they transferred him again, it was to the hospital.
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And again, they didn't call us until, you know, they had to move him.
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And so, you know, driving for an hour and you're you know, mom and I are both trying to figure out is it as bad as it sounds?
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You you don't want to overreact.
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But uh when we saw him, he couldn't hear, he couldn't talk, he couldn't move.
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He just laid in the bed.
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And it was very heartbreaking because I didn't get to see him one more time, nor did mom is able to have any kind of conversation with him.
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uh But it was very challenging to get him moved.
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They had him in Indiana.
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We lived in Illinois.
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And so that's when I learned what a challenge it is to move a fragile patient.
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And um so we learned that we had to get permission.
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We had to know that if dad died on the way, we had to stop at that point in the road and wait for the coroner to come and be released to, you know, go on home.
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Now, Many prayers were said and we were able to get dad home about 45 minutes before he transitioned.
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But it allowed all the family that could get there and see him one more time.
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And I know the hearing is something that goes, that's a very last sense that we have that goes.
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So I'm hopeful that he heard the voices even though he couldn't respond, but he knew that the people in the room were family and loved him.
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ah It was a big learning experience, it really was.
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Yeah, that sounds traumatic in many ways too, in terms of not having a choice and getting him move and his quick deterioration.
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And unfortunately, I see not the part about moving him without requesting to move him, but the part about how quickly someone with dementia declines when they move to a new environment.
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And there's oftentimes no no right time to move um and moving him closer to at the end for a family to be able to see him is definitely reasonable and appropriate uh and taking that risk of potentially dying on the road to back home must have been really scary too.
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Yeah, we were all, and I was the one that made the choice.
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So I knew all my family was like having a cow.
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That's we put it in the country.
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um But you you have to sometimes just step up and go, I know this is what he wants.
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Mom had said he wanted to be close to home.
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And I just felt like we had to take that chance to getting close.
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um And we made it.
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And you know, um I'm just grateful the powers to be got us there.
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Yeah.
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Yeah.
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And that you were able to say goodbye, and you didn't want him to die alone.
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And how much did that experience influence kind of what you do now as an end-of-life doula?
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Every one of these, you know, with family, had a, in my, I believe it was my sophomore year, we lost a young man to a farming accident.
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So all of those things that led up to that have all influenced me doing this.
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I think that's why I was a firefighter and our first responder was again, trying to find that way of serving others.
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And um I didn't know there was a title for what I was doing, you know, sitting by people.
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helping feed them or dress them or whatever they needed or supporting my mom or whoever.
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m And I had a girlfriend call me and she had gone to the seminar on being a death doula and she's like, Karen, you've been doing this your whole life.
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All you need to do is get certified.
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um So I took the course and um I had a double mastectomy in 23.
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And it was like, all of a sudden it was like, this is what you're supposed to be doing.
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Retire from work and do what you want to do.
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And it has been life changing because this is what I have been meant to do.
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And my goal is to sit with people um and love them and care for them, even though I know nothing about them, because we have that capacity.
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um there's a lot of people that don't have that.
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So every one of the instances I've gone through with my family and friends, et cetera, this has been my path, I think, all along.
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And I do appreciate being here at this point and doing this.
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Yeah, and thank you for sharing that.
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think this reminds me a lot um of a previous episode where I had interviewed uh a counselor who really is interested in grief counseling.
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And interestingly, David McLaughorn, I'll link to the show notes for those who want to go back and listen to that episode.
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when I asked him how he got into grief counseling, and he basically said the same thing.
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was essentially, his life had gone through a lot of loss and a lot of death and his family, and that he was almost led into this path because of what he had personally experienced.
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And I think in many ways, it's sort of why, you know, I am doing the work that I am doing now, both professionally and on this podcast, is to really kind of support people who were in the same position as I was, you know, as a sandwich generation caregiver.
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ah So here we are, our loved ones experiences at end of life really inspire us to kind of help other people who might be going through similar things.
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um So thank you.
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So let me make sure that I tell the audience what is an end of life doula.
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And I know that this is someone who is not uh not medical uh in terms of physician or advanced practice provider or nursing, but is someone who is providing that compassionate, thoughtful, dying support and building a relationship with the person who is dying, as well as advocating for their needs and wishes.
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uh How is an end of life doula different or similar to what hospice provides?
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um We are different, but yet hospice and the doula can and often do work very closely together.
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So um being a doula, as you said, we are not medical.
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However, our training does take us through different diseases, what they look like at different stages and the medication so that we understand what we should see when we're there.
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um So we we can't use patient, so we use client.
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um And our goal is to go in and give relief to the caregiver.
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Now there is a process where you set up how you interview and then you set up how often do they need you and is that something you can do.
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And then we're there to um help in any way that we can't bathe.
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or dress someone that we need to pull them up in the bed, if they need to want to be read to, they just want someone sitting by them.
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um That gives the caregiver time to step out.
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An hour, it doesn't sound like a lot of time, but if you're caring for someone all the time, that hour feels wonderful.
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And as one person said, I got to go outside and feel the sun on my face.
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Now we don't think that's a big deal in everyday life, but if you're doing this, you may not get to go out because we can't leave them too long by themselves.
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um So what we do is we work with the family.
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What do they want?
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What's their goal for this patient?
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um We uh work with hospice on who's the hospice nurse.
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How do we touch base with them when we see something um instead of um kind of adding to the craziness of the patient's family's life, we contact hospice and ask them, you know, or let them know what's going on and then hopefully they will come in.
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ah And I think for hospice, we have to understand too, times have changed.
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We don't have a lot of extra doctors and nurses around.
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um where a doctor may have come by, you know, once a month or something to see uh a patient or hospice was there more often, maybe once or twice a week.
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it's gotten to the point doctors can't usually come to a patient's home.
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And the nurses are overloaded too.
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So from what I know right now, it's mostly one time every couple of weeks at best because we just don't have enough.
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So that's where doulas can come in because we can step in and be eyes and ears for the hospice nurse and the doctor and even for the family.
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um And we know the changes in the stages of transition and we know the noises and understand when the body no longer is wanting food or drink, which is something a lot of people don't understand.
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But we're there to say, no, this is normal.
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And we have to honor that because if we feed or give too much fluid, we can actually hurt the person and make it worse.
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So uh Yeah.
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Thank contact lists of who might help someone, you know.
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So it's a little different than the medical side, but we're seeing how much we do need it.
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Right.
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how much it can help the family get through things.
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And doulas can work in many ways.
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I'm hopeful at some point we'll have more doulas at the hospital and emergency rooms so that if people are coming in without a family member or have no family member, there's someone that can sit with them when they're getting a diagnosis and what's next.
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Because that's very traumatic.
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know, that's just, nobody hears everything.
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I would like to see more Anyways, yeah, yeah.
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And so all of those things make a difference.
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And I think of doulas, probably most people have heard about doulas when it comes to childbirth, know, the entering life, entering life, that process of giving birth and navigating the healthcare system and advocating on behalf of your clients in terms of what they need.
00:21:32.692 --> 00:21:41.992
And I think even as a physician, the healthcare system is not easy to navigate and the support.
00:21:42.484 --> 00:21:46.728
from someone else uh is really very much appreciated.
00:21:46.728 --> 00:22:06.343
And I think in this culture too, where many people may not have experienced death up close and personal in the same way that maybe prior generations have, uh it is particularly scary to have someone die, to have someone die in front of you and knowing what to do.
00:22:06.343 --> 00:22:08.453
And I think hospice is great.
00:22:08.453 --> 00:22:10.265
And my husband is...
00:22:10.540 --> 00:22:30.381
going to work for a hospice very shortly, you're right in the sense that a lot of times, despite the best intentions of the hospice team, the family almost always have additional questions and have wondering about, know, is this normal?
00:22:30.580 --> 00:22:32.340
Is this expected?
00:22:33.080 --> 00:22:44.307
Just the amount of, you know, it's first time for many people, even if they're quite older, to experience death kind of personally in that situation.
00:22:44.307 --> 00:22:45.861
Yeah.
00:22:46.023 --> 00:22:46.598
Yeah.
00:22:46.598 --> 00:22:49.099
And I do want to reiterate what you said.
00:22:49.220 --> 00:22:55.063
We could not do without hospice, but we also have to understand, again, the limitations.
00:22:55.063 --> 00:23:07.990
And so having those of us who are willing to do this is just we're trying to fill a gap, a need, and be there to support everybody at one of the most challenging times in life.
00:23:07.990 --> 00:23:11.132
We go through a lot of transitions, but this is our final.
00:23:11.132 --> 00:23:14.794
And so it's really more challenging for people.
00:23:15.125 --> 00:23:16.546
Right, right, exactly.
00:23:16.546 --> 00:23:22.609
It's that finality that makes it particularly challenging.
00:23:23.491 --> 00:23:28.825
do families kind of pay for an end of life doula directly?
00:23:28.825 --> 00:23:35.500
Is it something where insurance covers or how does it work in terms of cost?
00:23:36.142 --> 00:23:46.407
um No, we are not, to my knowledge, unless it's happened in the last couple of weeks, I haven't been notified that insurance will pay for it, which we're not surprised.
00:23:46.407 --> 00:23:49.209
um But in another sense, Dr.
00:23:49.209 --> 00:23:57.013
Mia, I think it's also a blessing because then you don't have to wait for the paperwork and however long that's going to take.
00:23:57.013 --> 00:24:07.672
uh But yes, your doula will work with you on the cost of what the normal cost is and how We can work with you if you're not able to.
00:24:07.672 --> 00:24:23.816
um But we right now just have people pay us directly and um I hope that one day maybe we can get it covered because I think it will be such a blessing to everyone.
00:24:24.461 --> 00:24:31.901
Is there an average cost per hour for a Codulas or it kind of varies depending on who you contact?
00:24:32.897 --> 00:24:42.344
think it varies and it depends on your county, your state, um and also how much you want that person to.
00:24:42.344 --> 00:24:50.828
um If you need a lot of help, then that's up to you and the doula to discuss that and what that dollar amount might be.
00:24:50.828 --> 00:24:57.962
um So I think it's hard to set just because it depends on where you're at.
00:24:57.962 --> 00:25:05.730
And if I say a dollar figure for Winston-Salem, it's going to be totally different, you know, in Raleigh or New York or wherever.
00:25:05.890 --> 00:25:15.369
But the doula, when you're, you know, given a name and number and you connect, then you can go over all of that.
00:25:15.369 --> 00:25:23.190
But I believe I can say pretty openly that everybody works with our patients.
00:25:24.522 --> 00:25:25.173
Gotcha.
00:25:25.173 --> 00:25:25.673
Okay.
00:25:25.673 --> 00:25:36.769
ah And we'll also include your contact information in the show notes as well for people who might want to reach out to you directly for folks who might live in North Carolina.
00:25:36.769 --> 00:25:48.717
And I know we had also talked a little bit just about, you know, how thinking about death and preparing for the dying process may also change how we live.
00:25:48.717 --> 00:25:51.628
What have you seen in terms of your clients?
00:25:52.114 --> 00:26:02.622
Um, one of the great things I feel is that I've learned a lot more about when you learn about dying, you learn about living.
00:26:02.982 --> 00:26:18.695
And in that, what we see is the family and the patient may or may not, depending on where they're at in their process, that everything is so chaotic at the end or close to the end.
00:26:18.875 --> 00:26:26.240
And the family members are upset, they can be mad or angry because we're losing a physical body.
00:26:26.240 --> 00:26:37.388
We've got the memories, nobody can take those from us, but having that ability to hold somebody's hand or, you know, hey dad, what would you do in this instance?
00:26:37.489 --> 00:26:40.611
We lose that and that's part of life.
00:26:40.611 --> 00:26:52.115
But if we go to the point of handling that death piece early on, which is getting your advanced directives, your financial affairs in order.
00:26:52.115 --> 00:27:04.384
um There are some things you can do for emotional and mental and um having those conversations with all the people before you get a diagnosis would be wonderful.
00:27:04.384 --> 00:27:15.535
Now know that can't always happen but when we take that piece out that patient or client can now take a deep breath because all of that's done.
00:27:15.535 --> 00:27:26.763
Everybody knows their piece in what happens and At that point, now people can look at living a little differently and especially the client.
00:27:26.943 --> 00:27:28.914
Maybe there's thank yous that haven't been said.
00:27:28.914 --> 00:27:33.945
Maybe there's someone that they need to contact that they feel they have to have that conversation.
00:27:33.945 --> 00:27:44.749
A lot of that gets missed because when you've got the diagnosis and now you're trying to get all the paperwork done and get a hold of all the people, it just feels like the weight of the world is on you.
00:27:44.990 --> 00:27:46.470
And so...
00:27:46.690 --> 00:27:52.071
getting those things taken care of earlier than later is always a blessing.
00:27:52.112 --> 00:28:01.029
And I can say that with an understanding because my son-in-law was killed by drunk drivers at 40.
00:28:01.175 --> 00:28:09.079
And they had not really put life insurance in the plan where they worked because they were young and my daughter was 36.
00:28:09.079 --> 00:28:11.019
So it's like, we got time.
00:28:11.039 --> 00:28:12.480
Well, we never know.
00:28:13.000 --> 00:28:34.569
And so I think that everybody wherever you're at if you're married you have children you really need to do it now because it's easy to change it and update it but it's it's it's really awful yeah go back in time and and I wish they had documents and things in place and plan set.
00:28:34.569 --> 00:28:39.030
ah Yeah, I think that that makes total sense.
00:28:39.030 --> 00:28:47.923
And I think ah I have had a close friend pass away from a drunk driver when we were juniors in college.
00:28:47.923 --> 00:28:51.374
And I think that experience really shaped a lot of.
00:28:52.074 --> 00:28:59.426
My outlook on life as well, and that, you know, death can happen at any time, even when you're young.
00:28:59.426 --> 00:29:12.904
And perhaps that also influences, you know, what I do now, because I think death is not necessarily something super scary to me in the sense that we all die.
00:29:12.904 --> 00:29:22.856
It's just a matter of time, but it's about, you know, how do we better live with the time that we have not knowing what the future may hold.
00:29:22.856 --> 00:29:39.134
I'm curious, how would you, what advice would you give to say a caregiver who is taking care of someone who has dementia, may not be able to really communicate what their needs are, what their wishes are, or even who they want to say goodbye to?
00:29:40.663 --> 00:29:50.585
And that's a challenge, and you know as well as I do, that's a tough part when there's no, um whether it's verbal or even able to write because they often can't write anymore.
00:29:50.585 --> 00:29:53.925
um I think the first thing, Dr.
00:29:53.925 --> 00:29:55.465
Mia, is grace.
00:29:55.707 --> 00:30:03.307
We have to have grace for ourselves when we're doing the caregiving, and we have to have grace for the person that we're caring for.
00:30:03.347 --> 00:30:10.529
And a big part of that to me is that when you're caring for them, you need patience.
00:30:10.890 --> 00:30:13.171
as much as we can and that's hard.
00:30:13.171 --> 00:30:15.651
I'm not always a patient person, but I try.
00:30:15.810 --> 00:30:22.393
But they no longer can control what they're thinking and what they're doing and what they're feeling.
00:30:22.393 --> 00:30:30.414
And so, you know, in the instance of my dad, he came out with, you know, more negative ways of things coming out.
00:30:30.414 --> 00:30:31.935
And it's very difficult.
00:30:31.935 --> 00:30:40.917
You know, my mom, you know, they were almost 40 married 40 years to see what they've come through and where they're at at this end.
00:30:41.006 --> 00:30:43.405
It just doesn't seem right.
00:30:43.405 --> 00:30:57.786
But I think if we can step back as much as possible, whether it's 15 minutes, 30 minutes, an hour is optimum, but you have to take those breaks to walk away from it because it will build up.
00:30:57.786 --> 00:31:01.286
Even if you're trying your best to go, it's OK.
00:31:01.326 --> 00:31:06.205
We tend to let it build up in us, and that's not good for us.
00:31:06.586 --> 00:31:08.086
And I think.
00:31:08.307 --> 00:31:16.460
Even my mom made the comment when I talked to her, she said it is a living hell watching them go through all of this and knowing you can do nothing about it.
00:31:16.460 --> 00:31:28.105
um And having gone through it more than once, um she said the best thing you can do is love and care for each other and know that it's never going to be easy.
00:31:28.105 --> 00:31:32.346
There's no easy way for it to be done.
00:31:32.367 --> 00:31:47.118
So um I think when you go into it, if possible, my view would be that if you can have four or five people, whether it's church, family, friends, that can come in and help you.
00:31:47.278 --> 00:31:55.263
know, it takes for dad when they wanted us to look at taking them home, two people had to be there 24 hours a day.
00:31:55.903 --> 00:32:01.548
Well, that's not always possible because most are still working and have kids, et cetera.
00:32:01.548 --> 00:32:06.220
So even if you can get help for an hour or two and get a break.
00:32:06.220 --> 00:32:08.291
and then maybe later in the day you get it.
00:32:08.291 --> 00:32:15.537
But um often you'll find people that will help you that can love and care for someone in these situations.
00:32:15.597 --> 00:32:17.739
So don't take it on yourself.
00:32:17.759 --> 00:32:21.102
It's gonna take you down quickly, health-wise.
00:32:22.057 --> 00:32:30.605
Yeah, I think that's where so many caregivers really struggle, whether it's financially or just being more socially isolated now.
00:32:30.904 --> 00:32:42.675
Having that community to rely upon is more challenging than ever compared to when, you know, people lived more close to their extended family.
00:32:42.795 --> 00:32:55.351
And this is where I think asking for very detailed and specific asks, like, you come for an hour on Thursday while I go?
00:32:55.351 --> 00:33:02.615
um A lot of times I know a lot of my patients don't want to ask because they don't want to be a burden for other people.
00:33:02.615 --> 00:33:07.636
And so it's the primary caregiver that takes it on all for him or herself.
00:33:07.636 --> 00:33:33.874
um And that it's easy for people who are not in that situation to say take a break, but it's definitely um more difficult for the person who is doing that caregiving to have to step back and take a break and find someone who's willing to help as well as being able to financially afford that help.
00:33:33.874 --> 00:33:41.598
All of that is where I think as a society, we could do better at supporting caregivers.
00:33:41.702 --> 00:33:48.646
who are doing this extraordinary work um every day, day in and day out and without a break.
00:33:48.646 --> 00:34:15.224
um I think one other thing I wanted to comment on was just about the fact that for people living with dementia, now, especially at the stage where a lot of caregivers are getting involved, there's nothing that's going to make them better in terms of that disease and it is watching the decline, whether it's slow or fast.
00:34:15.224 --> 00:34:19.166
And sometimes people have even asked like, how could I do this work?
00:34:19.487 --> 00:34:25.449
Because it is watching people decline and telling people that they have dementia or memory changes.
00:34:25.449 --> 00:34:31.532
And I think to me, it's always been about presence rather than a cure.
00:34:32.722 --> 00:34:47.065
The being present to the best of our ability, being that bearing witness to what they're going through, whether as an end of life doula or medical professional or even family member.
00:34:47.065 --> 00:34:49.498
I think that is such a sacred thing.
00:34:49.498 --> 00:35:07.507
And it's not something that is a cure, obviously, but it's definitely something that people need and may not have anyone to even bear presence or to be along for that journey.
00:35:07.507 --> 00:35:22.235
And so to me, I find it that if I'm able to be part of the journey and bear witness and help a little bit, to me that is still a worthwhile thing to do.
00:35:22.235 --> 00:35:27.782
um And I'm sure you feel the same way, otherwise you wouldn't be a doula.
00:35:27.782 --> 00:35:28.922
Yes.
00:35:28.922 --> 00:35:35.686
And I think, you know, to your point, for me, I often have people go, well, why would you do this?
00:35:35.686 --> 00:35:37.507
You know, this is death.
00:35:37.507 --> 00:35:43.548
Well, to me, death should be celebrated because this person was in my life.
00:35:43.548 --> 00:35:46.670
Yes, they've said things that hurt my feelings, but they've also taught me things.
00:35:46.670 --> 00:35:52.873
And sometimes it's been 10 years or more later and I go, oh, I heard the words, but I didn't hear the meaning.
00:35:52.873 --> 00:35:54.572
And it sinks in.
00:35:54.653 --> 00:36:14.300
So um I think those moments are important, but I also think when you can be present and show love and care, no matter how little you know about a person, that is something they take in as a blessing because it's hard for a lot of people to do that and it's fine.
00:36:14.300 --> 00:36:27.117
Not all of us are made the same, but I am ah obviously blessed and honored every time someone needs me to be with them because It is that final transition.
00:36:27.117 --> 00:36:28.509
It's a tough one.
00:36:28.509 --> 00:36:34.672
And if I can make the smallest difference in that transition, then I've done well.
00:36:34.672 --> 00:36:46.402
So I think if we can go into it with being present and love and caring and try to put the other kind of aside of what's really in front of us, it will help you get through it.
00:36:47.476 --> 00:36:49.088
Thank you for that, Karen.
00:36:49.088 --> 00:36:50.958
And thank you for those who are listening.
00:36:50.958 --> 00:36:59.094
know this, you know, talking about death is never easy, but I think it's really what needs to be talked about more often.
00:36:59.094 --> 00:37:04.498
So thank you for joining us and ah we will talk to you next time.
00:37:04.498 --> 00:37:05.637
Thank you.
00:00:01.719 --> 00:00:04.580
Thank you for joining this episode of Ask Dr.
00:00:04.580 --> 00:00:05.730
Mia.
00:00:05.730 --> 00:00:10.772
I am excited to talk to you all today with Karen McGovern.
00:00:10.772 --> 00:00:19.515
She is a certified end of life doula and has had personal experience caring for multiple family members.
00:00:19.696 --> 00:00:29.876
And I'm excited for our conversation today to really talk about what she has experienced both personally and professionally.
00:00:29.876 --> 00:00:32.226
navigating through the end of life journey.
00:00:32.226 --> 00:00:34.685
So welcome to the podcast, Karen.
00:00:34.904 --> 00:00:35.557
Thank you, Dr.
00:00:35.557 --> 00:00:36.457
Mia.
00:00:36.481 --> 00:00:38.024
It's a pleasure to be here.
00:00:38.057 --> 00:00:39.348
Thank you for joining.
00:00:39.348 --> 00:00:55.149
And just to start out with, I was hoping you can share with the listeners a little bit about who you have cared for and what that experience has been like, as well as who your family members are as people.
00:00:55.725 --> 00:00:56.566
Okay, thank you.
00:00:56.566 --> 00:01:04.950
um I have cared for uh several online virtual, so I can do virtual work as well as in person.
00:01:04.950 --> 00:01:10.334
um I do like being in person so that I can be there with the person.
00:01:10.334 --> 00:01:21.090
m But that is a challenging piece because you're trying to work with what the family's telling you because usually the patient or the client cannot.
00:01:21.090 --> 00:01:22.721
so...
00:01:24.365 --> 00:01:38.385
It took me a couple times to be able to get into that smoothly, but it is good to know in the end that everybody is pleased with having someone there that can, you know, kind of calm things down and talk things down when they get crazy.
00:01:39.646 --> 00:01:41.778
As far as so sorry.
00:01:41.778 --> 00:01:48.195
think I meant like the how who you have cared for personally, not professionally.
00:01:48.927 --> 00:01:54.269
Personally, I have helped with my uh father.
00:01:54.290 --> 00:02:02.515
He had cancer for two years and um he was about three to five years old when he passed and I was 13.
00:02:02.515 --> 00:02:04.075
My baby brother was five.
00:02:04.075 --> 00:02:12.711
uh And that was, uh it was challenging in so many ways because my mother at that point had an eighth grade education.
00:02:12.711 --> 00:02:22.479
She was learning to, you know, balance a checkbook, write a check, drive, and how do you raise six kids all of a sudden by yourself and you're 28 years old?
00:02:22.479 --> 00:02:24.699
um But we did it.
00:02:24.699 --> 00:02:29.260
um And mom and I took care of dad the best we could.
00:02:29.260 --> 00:02:34.862
And then um with the cancer getting worse, then he eventually went to the VA hospital.
00:02:34.862 --> 00:02:38.794
But watching what they go through is very tough.
00:02:38.794 --> 00:02:53.626
Even though I was there, I don't think I really grasped all of it until I got older because he wasn't able to always walk well or dress himself and things of that nature.
00:02:55.725 --> 00:03:02.485
So that was my first, I guess, really challenging experience.
00:03:02.485 --> 00:03:06.506
Others had died but hitting home when it's your parent.
00:03:08.366 --> 00:03:11.966
Oh yeah, I'd have been 11 when he first got sick.
00:03:13.710 --> 00:03:16.229
And then from there, there were family members.
00:03:17.210 --> 00:03:20.250
My father died in 1969.
00:03:20.370 --> 00:03:27.370
My great aunt or yeah, my great aunt died in the same year from breast cancer.
00:03:27.389 --> 00:03:33.569
My grandfather died in 1972 with emphysema and it just kind of kept rolling.
00:03:33.849 --> 00:03:43.030
So my family, we all have come to accept cancer is the biggest issue we have to deal with and it's not environmental.
00:03:43.542 --> 00:03:45.883
I'm sorry, it's not family, it's environmental.
00:03:45.883 --> 00:03:50.906
um So where we grew up, there was a refinery and an electric plant.
00:03:50.906 --> 00:03:53.967
Across the river was a nuclear plant.
00:03:53.967 --> 00:04:00.931
And then all of the herbicides, pesticides, everything we put in the ground that we didn't even know could cause issues.
00:04:00.931 --> 00:04:08.194
So uh a big majority of my family has died of cancer or had breast cancer or various other cancers.
00:04:08.194 --> 00:04:11.586
um My mom has had it.
00:04:11.586 --> 00:04:13.518
I've gone through that with her.
00:04:13.774 --> 00:04:20.918
and um I've gone through with my stepdad and I will call him dad going forward.
00:04:20.918 --> 00:04:40.574
um He had Alzheimer's and so that was a totally different experience to go through and I will say right now the one thing is I was a firefighter and a first responder and one of the first things you learn is that if it's a family member you must step back.
00:04:40.598 --> 00:04:44.000
And if you do not, you can be put on suspension.
00:04:44.021 --> 00:04:51.987
Because when you're working in these positions, it's absolutely difficult to remove yourself emotionally.
00:04:51.987 --> 00:05:00.586
You try to do what you know is right by all of the rules and laws, but it's so hard for that flip of, they're mine.
00:05:00.586 --> 00:05:04.137
Yeah, yeah, and that's kind of how I felt personally too.
00:05:04.137 --> 00:05:04.826
It's different.
00:05:04.826 --> 00:05:13.649
My mom died from ovarian cancer and, uh you know, being the daughter is definitely different from being the doctor.
00:05:13.649 --> 00:05:25.312
ah Professionally, I think I've given plenty of hard news to people, but it's a totally different experience when it's your own parent or your own family.
00:05:25.312 --> 00:05:41.766
And I think that we had that similar experience of when it's your own family, particularly for someone with dementia, it hits differently, uh more on an emotional level in addition to an intellectual level.
00:05:41.766 --> 00:05:58.206
But I think that advice from firefighting academy or first responder training is really useful to keep in mind that even if you are professionally doing this work as a caregiver, it's still different and you still need help.
00:05:58.206 --> 00:06:03.980
um Even if you know all the things to do, it's still different when it's your own family.
00:06:03.980 --> 00:06:07.031
Yeah.
00:06:07.031 --> 00:06:14.666
And how was it in terms of your dad, your mom's second husband in terms of his dementia?
00:06:16.946 --> 00:06:21.399
I think we noticed it early on, but I did verify things with mom.
00:06:21.399 --> 00:06:30.418
So um it really became uh serious in 2016 and um mom had to have open heart surgery.
00:06:30.418 --> 00:06:38.935
So we had to put him in a facility because there wasn't anybody else to help take care of him as brothers and sisters were all across the United States.
00:06:38.935 --> 00:06:41.016
So that doesn't help a lot.
00:06:41.016 --> 00:06:51.125
But, um and when she got out, you know, it had advanced and um in two years he was gone.
00:06:52.007 --> 00:07:10.220
But dealing with it, I think that one of the more difficult things for me, and again, because you're talking family, was watching, that wasn't necessarily always the easiest person to talk with, but now there was this violent, I call it, side to him.
00:07:10.220 --> 00:07:13.175
um And...
00:07:13.175 --> 00:07:14.646
You're trying to grasp that.
00:07:14.646 --> 00:07:16.427
How did this appear?
00:07:16.427 --> 00:07:18.406
What made this come out?
00:07:18.406 --> 00:07:26.389
um And there was a point where he pushed furniture up against the door to keep people out.
00:07:26.389 --> 00:07:31.971
He broke family pictures because he didn't know who they were and why they were in his room.
00:07:33.110 --> 00:07:37.341
Trying to feed him and dress for him and care for him was very challenging.
00:07:37.341 --> 00:07:39.752
There were a lot of issues at the nursing home over that.
00:07:39.752 --> 00:07:50.130
um And then, My mom called me and I went back to Illinois when things really started, you know, seemed to be going down quickly.
00:07:50.451 --> 00:08:00.358
And they allowed an eight month uh pregnant, they allowed a nurse who was eight months pregnant to take on my dad that day.
00:08:00.358 --> 00:08:04.341
And dad got violent and he knocked her down and hurt her.
00:08:04.380 --> 00:08:11.295
And so they automatically transferred him an hour away to a lockdown facility.
00:08:11.557 --> 00:08:14.059
They call them behavioral lockdowns for them.
00:08:14.319 --> 00:08:17.939
And in a week, he just started deteriorating.
00:08:18.459 --> 00:08:23.940
They brought him into the hospital after a hospital close to that location.
00:08:24.062 --> 00:08:28.283
And they did a series of tests that they should not have ever done.
00:08:28.283 --> 00:08:31.324
There was no reason for him in my opinion.
00:08:31.324 --> 00:08:33.144
I'm not a doctor, but it's my opinion.
00:08:33.144 --> 00:08:50.285
um And within two weeks, it was pretty much over because The doctor had told us that they could get the blood pressure kind of, or the blood sugar to balance, but he was going to come back every two weeks.
00:08:50.285 --> 00:08:51.572
It would not stay balanced.
00:08:51.572 --> 00:08:53.412
They weren't able to do that.
00:08:53.692 --> 00:08:56.241
And um it was at that.
00:08:56.241 --> 00:08:57.513
diabetes as well.
00:08:57.513 --> 00:09:00.735
Okay, that that was the sugar related to that.
00:09:00.735 --> 00:09:09.414
But yeah, yeah, he was not the same after that transfer to that uh lockdown facility and being sick.
00:09:09.414 --> 00:09:12.100
And I'm so sorry that happened.
00:09:12.100 --> 00:09:17.462
It sounded like your family did not get a choice as to whether he he had to be transferred.
00:09:17.462 --> 00:09:19.164
They just transferred him.
00:09:19.309 --> 00:09:20.889
They didn't even call us, Dr.
00:09:20.889 --> 00:09:21.429
Mia.
00:09:21.429 --> 00:09:27.649
They moved him an hour, a little over an hour away, and then called my mom and I.
00:09:27.649 --> 00:09:28.809
And we were shocked.
00:09:28.809 --> 00:09:37.850
And of course, like anybody, all you can do is react at that point as, okay, we've got to get everything together, all the paperwork and drive and get there.
00:09:37.970 --> 00:09:40.649
When they transferred him again, it was to the hospital.
00:09:40.649 --> 00:09:44.509
And again, they didn't call us until, you know, they had to move him.
00:09:44.509 --> 00:09:53.166
And so, you know, driving for an hour and you're you know, mom and I are both trying to figure out is it as bad as it sounds?
00:09:53.166 --> 00:09:55.067
You you don't want to overreact.
00:09:55.067 --> 00:10:01.673
But uh when we saw him, he couldn't hear, he couldn't talk, he couldn't move.
00:10:01.673 --> 00:10:03.394
He just laid in the bed.
00:10:03.394 --> 00:10:14.023
And it was very heartbreaking because I didn't get to see him one more time, nor did mom is able to have any kind of conversation with him.
00:10:14.023 --> 00:10:20.316
uh But it was very challenging to get him moved.
00:10:20.316 --> 00:10:21.567
They had him in Indiana.
00:10:21.567 --> 00:10:22.817
We lived in Illinois.
00:10:22.817 --> 00:10:29.383
And so that's when I learned what a challenge it is to move a fragile patient.
00:10:29.764 --> 00:10:33.679
And um so we learned that we had to get permission.
00:10:33.679 --> 00:10:45.638
We had to know that if dad died on the way, we had to stop at that point in the road and wait for the coroner to come and be released to, you know, go on home.
00:10:45.638 --> 00:10:54.511
Now, Many prayers were said and we were able to get dad home about 45 minutes before he transitioned.
00:10:54.511 --> 00:10:59.715
But it allowed all the family that could get there and see him one more time.
00:10:59.796 --> 00:11:05.539
And I know the hearing is something that goes, that's a very last sense that we have that goes.
00:11:05.539 --> 00:11:13.345
So I'm hopeful that he heard the voices even though he couldn't respond, but he knew that the people in the room were family and loved him.
00:11:13.345 --> 00:11:18.572
ah It was a big learning experience, it really was.
00:11:18.780 --> 00:11:27.366
Yeah, that sounds traumatic in many ways too, in terms of not having a choice and getting him move and his quick deterioration.
00:11:27.366 --> 00:11:39.995
And unfortunately, I see not the part about moving him without requesting to move him, but the part about how quickly someone with dementia declines when they move to a new environment.
00:11:39.995 --> 00:12:04.246
And there's oftentimes no no right time to move um and moving him closer to at the end for a family to be able to see him is definitely reasonable and appropriate uh and taking that risk of potentially dying on the road to back home must have been really scary too.
00:12:04.981 --> 00:12:08.543
Yeah, we were all, and I was the one that made the choice.
00:12:08.543 --> 00:12:11.464
So I knew all my family was like having a cow.
00:12:11.864 --> 00:12:13.224
That's we put it in the country.
00:12:13.224 --> 00:12:18.916
um But you you have to sometimes just step up and go, I know this is what he wants.
00:12:18.916 --> 00:12:21.546
Mom had said he wanted to be close to home.
00:12:21.807 --> 00:12:25.868
And I just felt like we had to take that chance to getting close.
00:12:25.868 --> 00:12:28.788
um And we made it.
00:12:28.928 --> 00:12:34.559
And you know, um I'm just grateful the powers to be got us there.
00:12:34.563 --> 00:12:35.504
Yeah.
00:12:36.105 --> 00:12:37.174
Yeah.
00:12:37.174 --> 00:12:42.668
And that you were able to say goodbye, and you didn't want him to die alone.
00:12:42.707 --> 00:12:50.951
And how much did that experience influence kind of what you do now as an end-of-life doula?
00:12:52.296 --> 00:13:03.870
Every one of these, you know, with family, had a, in my, I believe it was my sophomore year, we lost a young man to a farming accident.
00:13:03.870 --> 00:13:09.273
So all of those things that led up to that have all influenced me doing this.
00:13:09.893 --> 00:13:16.034
I think that's why I was a firefighter and our first responder was again, trying to find that way of serving others.
00:13:16.135 --> 00:13:22.028
And um I didn't know there was a title for what I was doing, you know, sitting by people.
00:13:22.028 --> 00:13:27.600
helping feed them or dress them or whatever they needed or supporting my mom or whoever.
00:13:27.600 --> 00:13:37.486
m And I had a girlfriend call me and she had gone to the seminar on being a death doula and she's like, Karen, you've been doing this your whole life.
00:13:37.486 --> 00:13:39.128
All you need to do is get certified.
00:13:39.128 --> 00:13:50.365
um So I took the course and um I had a double mastectomy in 23.
00:13:50.389 --> 00:13:54.510
And it was like, all of a sudden it was like, this is what you're supposed to be doing.
00:13:54.510 --> 00:13:57.429
Retire from work and do what you want to do.
00:13:57.429 --> 00:14:04.029
And it has been life changing because this is what I have been meant to do.
00:14:04.029 --> 00:14:13.537
And my goal is to sit with people um and love them and care for them, even though I know nothing about them, because we have that capacity.
00:14:13.537 --> 00:14:17.447
um there's a lot of people that don't have that.
00:14:17.557 --> 00:14:26.374
So every one of the instances I've gone through with my family and friends, et cetera, this has been my path, I think, all along.
00:14:26.596 --> 00:14:30.221
And I do appreciate being here at this point and doing this.
00:14:30.682 --> 00:14:32.923
Yeah, and thank you for sharing that.
00:14:32.923 --> 00:14:43.796
think this reminds me a lot um of a previous episode where I had interviewed uh a counselor who really is interested in grief counseling.
00:14:43.796 --> 00:14:51.969
And interestingly, David McLaughorn, I'll link to the show notes for those who want to go back and listen to that episode.
00:14:51.969 --> 00:14:56.692
when I asked him how he got into grief counseling, and he basically said the same thing.
00:14:56.692 --> 00:15:09.808
was essentially, his life had gone through a lot of loss and a lot of death and his family, and that he was almost led into this path because of what he had personally experienced.
00:15:09.808 --> 00:15:27.303
And I think in many ways, it's sort of why, you know, I am doing the work that I am doing now, both professionally and on this podcast, is to really kind of support people who were in the same position as I was, you know, as a sandwich generation caregiver.
00:15:27.303 --> 00:15:39.828
ah So here we are, our loved ones experiences at end of life really inspire us to kind of help other people who might be going through similar things.
00:15:39.828 --> 00:15:41.899
um So thank you.
00:15:41.899 --> 00:15:47.111
So let me make sure that I tell the audience what is an end of life doula.
00:15:47.111 --> 00:16:14.168
And I know that this is someone who is not uh not medical uh in terms of physician or advanced practice provider or nursing, but is someone who is providing that compassionate, thoughtful, dying support and building a relationship with the person who is dying, as well as advocating for their needs and wishes.
00:16:14.168 --> 00:16:21.535
uh How is an end of life doula different or similar to what hospice provides?
00:16:22.413 --> 00:16:31.620
um We are different, but yet hospice and the doula can and often do work very closely together.
00:16:31.682 --> 00:16:36.426
So um being a doula, as you said, we are not medical.
00:16:36.426 --> 00:16:48.455
However, our training does take us through different diseases, what they look like at different stages and the medication so that we understand what we should see when we're there.
00:16:48.455 --> 00:16:56.403
um So we we can't use patient, so we use client.
00:16:56.403 --> 00:17:03.384
um And our goal is to go in and give relief to the caregiver.
00:17:03.985 --> 00:17:11.798
Now there is a process where you set up how you interview and then you set up how often do they need you and is that something you can do.
00:17:11.798 --> 00:17:21.223
And then we're there to um help in any way that we can't bathe.
00:17:21.223 --> 00:17:28.679
or dress someone that we need to pull them up in the bed, if they need to want to be read to, they just want someone sitting by them.
00:17:28.679 --> 00:17:32.821
um That gives the caregiver time to step out.
00:17:32.821 --> 00:17:39.865
An hour, it doesn't sound like a lot of time, but if you're caring for someone all the time, that hour feels wonderful.
00:17:39.926 --> 00:17:45.970
And as one person said, I got to go outside and feel the sun on my face.
00:17:46.570 --> 00:17:56.339
Now we don't think that's a big deal in everyday life, but if you're doing this, you may not get to go out because we can't leave them too long by themselves.
00:17:56.339 --> 00:18:02.143
um So what we do is we work with the family.
00:18:02.143 --> 00:18:03.063
What do they want?
00:18:03.063 --> 00:18:05.923
What's their goal for this patient?
00:18:05.923 --> 00:18:11.365
um We uh work with hospice on who's the hospice nurse.
00:18:11.365 --> 00:18:30.365
How do we touch base with them when we see something um instead of um kind of adding to the craziness of the patient's family's life, we contact hospice and ask them, you know, or let them know what's going on and then hopefully they will come in.
00:18:30.365 --> 00:18:35.130
ah And I think for hospice, we have to understand too, times have changed.
00:18:35.130 --> 00:18:39.833
We don't have a lot of extra doctors and nurses around.
00:18:39.833 --> 00:18:50.761
um where a doctor may have come by, you know, once a month or something to see uh a patient or hospice was there more often, maybe once or twice a week.
00:18:50.862 --> 00:18:56.602
it's gotten to the point doctors can't usually come to a patient's home.
00:18:57.402 --> 00:19:00.501
And the nurses are overloaded too.
00:19:00.501 --> 00:19:10.382
So from what I know right now, it's mostly one time every couple of weeks at best because we just don't have enough.
00:19:10.382 --> 00:19:20.382
So that's where doulas can come in because we can step in and be eyes and ears for the hospice nurse and the doctor and even for the family.
00:19:20.461 --> 00:19:36.885
um And we know the changes in the stages of transition and we know the noises and understand when the body no longer is wanting food or drink, which is something a lot of people don't understand.
00:19:36.885 --> 00:19:39.807
But we're there to say, no, this is normal.
00:19:39.807 --> 00:19:48.648
And we have to honor that because if we feed or give too much fluid, we can actually hurt the person and make it worse.
00:19:48.750 --> 00:20:02.269
So uh Yeah.
00:20:02.269 --> 00:20:07.730
Thank contact lists of who might help someone, you know.
00:20:07.951 --> 00:20:17.814
So it's a little different than the medical side, but we're seeing how much we do need it.
00:20:17.931 --> 00:20:18.711
Right.
00:20:18.711 --> 00:20:22.363
how much it can help the family get through things.
00:20:22.363 --> 00:20:25.284
And doulas can work in many ways.
00:20:25.284 --> 00:20:39.508
I'm hopeful at some point we'll have more doulas at the hospital and emergency rooms so that if people are coming in without a family member or have no family member, there's someone that can sit with them when they're getting a diagnosis and what's next.
00:20:39.508 --> 00:20:41.228
Because that's very traumatic.
00:20:41.228 --> 00:20:45.189
know, that's just, nobody hears everything.
00:20:45.721 --> 00:21:12.038
I would like to see more Anyways, yeah, yeah.
00:21:12.432 --> 00:21:15.084
And so all of those things make a difference.
00:21:15.212 --> 00:21:32.692
And I think of doulas, probably most people have heard about doulas when it comes to childbirth, know, the entering life, entering life, that process of giving birth and navigating the healthcare system and advocating on behalf of your clients in terms of what they need.
00:21:32.692 --> 00:21:41.992
And I think even as a physician, the healthcare system is not easy to navigate and the support.
00:21:42.484 --> 00:21:46.728
from someone else uh is really very much appreciated.
00:21:46.728 --> 00:22:06.343
And I think in this culture too, where many people may not have experienced death up close and personal in the same way that maybe prior generations have, uh it is particularly scary to have someone die, to have someone die in front of you and knowing what to do.
00:22:06.343 --> 00:22:08.453
And I think hospice is great.
00:22:08.453 --> 00:22:10.265
And my husband is...
00:22:10.540 --> 00:22:30.381
going to work for a hospice very shortly, you're right in the sense that a lot of times, despite the best intentions of the hospice team, the family almost always have additional questions and have wondering about, know, is this normal?
00:22:30.580 --> 00:22:32.340
Is this expected?
00:22:33.080 --> 00:22:44.307
Just the amount of, you know, it's first time for many people, even if they're quite older, to experience death kind of personally in that situation.
00:22:44.307 --> 00:22:45.861
Yeah.
00:22:46.023 --> 00:22:46.598
Yeah.
00:22:46.598 --> 00:22:49.099
And I do want to reiterate what you said.
00:22:49.220 --> 00:22:55.063
We could not do without hospice, but we also have to understand, again, the limitations.
00:22:55.063 --> 00:23:07.990
And so having those of us who are willing to do this is just we're trying to fill a gap, a need, and be there to support everybody at one of the most challenging times in life.
00:23:07.990 --> 00:23:11.132
We go through a lot of transitions, but this is our final.
00:23:11.132 --> 00:23:14.794
And so it's really more challenging for people.
00:23:15.125 --> 00:23:16.546
Right, right, exactly.
00:23:16.546 --> 00:23:22.609
It's that finality that makes it particularly challenging.
00:23:23.491 --> 00:23:28.825
do families kind of pay for an end of life doula directly?
00:23:28.825 --> 00:23:35.500
Is it something where insurance covers or how does it work in terms of cost?
00:23:36.142 --> 00:23:46.407
um No, we are not, to my knowledge, unless it's happened in the last couple of weeks, I haven't been notified that insurance will pay for it, which we're not surprised.
00:23:46.407 --> 00:23:49.209
um But in another sense, Dr.
00:23:49.209 --> 00:23:57.013
Mia, I think it's also a blessing because then you don't have to wait for the paperwork and however long that's going to take.
00:23:57.013 --> 00:24:07.672
uh But yes, your doula will work with you on the cost of what the normal cost is and how We can work with you if you're not able to.
00:24:07.672 --> 00:24:23.816
um But we right now just have people pay us directly and um I hope that one day maybe we can get it covered because I think it will be such a blessing to everyone.
00:24:24.461 --> 00:24:31.901
Is there an average cost per hour for a Codulas or it kind of varies depending on who you contact?
00:24:32.897 --> 00:24:42.344
think it varies and it depends on your county, your state, um and also how much you want that person to.
00:24:42.344 --> 00:24:50.828
um If you need a lot of help, then that's up to you and the doula to discuss that and what that dollar amount might be.
00:24:50.828 --> 00:24:57.962
um So I think it's hard to set just because it depends on where you're at.
00:24:57.962 --> 00:25:05.730
And if I say a dollar figure for Winston-Salem, it's going to be totally different, you know, in Raleigh or New York or wherever.
00:25:05.890 --> 00:25:15.369
But the doula, when you're, you know, given a name and number and you connect, then you can go over all of that.
00:25:15.369 --> 00:25:23.190
But I believe I can say pretty openly that everybody works with our patients.
00:25:24.522 --> 00:25:25.173
Gotcha.
00:25:25.173 --> 00:25:25.673
Okay.
00:25:25.673 --> 00:25:36.769
ah And we'll also include your contact information in the show notes as well for people who might want to reach out to you directly for folks who might live in North Carolina.
00:25:36.769 --> 00:25:48.717
And I know we had also talked a little bit just about, you know, how thinking about death and preparing for the dying process may also change how we live.
00:25:48.717 --> 00:25:51.628
What have you seen in terms of your clients?
00:25:52.114 --> 00:26:02.622
Um, one of the great things I feel is that I've learned a lot more about when you learn about dying, you learn about living.
00:26:02.982 --> 00:26:18.695
And in that, what we see is the family and the patient may or may not, depending on where they're at in their process, that everything is so chaotic at the end or close to the end.
00:26:18.875 --> 00:26:26.240
And the family members are upset, they can be mad or angry because we're losing a physical body.
00:26:26.240 --> 00:26:37.388
We've got the memories, nobody can take those from us, but having that ability to hold somebody's hand or, you know, hey dad, what would you do in this instance?
00:26:37.489 --> 00:26:40.611
We lose that and that's part of life.
00:26:40.611 --> 00:26:52.115
But if we go to the point of handling that death piece early on, which is getting your advanced directives, your financial affairs in order.
00:26:52.115 --> 00:27:04.384
um There are some things you can do for emotional and mental and um having those conversations with all the people before you get a diagnosis would be wonderful.
00:27:04.384 --> 00:27:15.535
Now know that can't always happen but when we take that piece out that patient or client can now take a deep breath because all of that's done.
00:27:15.535 --> 00:27:26.763
Everybody knows their piece in what happens and At that point, now people can look at living a little differently and especially the client.
00:27:26.943 --> 00:27:28.914
Maybe there's thank yous that haven't been said.
00:27:28.914 --> 00:27:33.945
Maybe there's someone that they need to contact that they feel they have to have that conversation.
00:27:33.945 --> 00:27:44.749
A lot of that gets missed because when you've got the diagnosis and now you're trying to get all the paperwork done and get a hold of all the people, it just feels like the weight of the world is on you.
00:27:44.990 --> 00:27:46.470
And so...
00:27:46.690 --> 00:27:52.071
getting those things taken care of earlier than later is always a blessing.
00:27:52.112 --> 00:28:01.029
And I can say that with an understanding because my son-in-law was killed by drunk drivers at 40.
00:28:01.175 --> 00:28:09.079
And they had not really put life insurance in the plan where they worked because they were young and my daughter was 36.
00:28:09.079 --> 00:28:11.019
So it's like, we got time.
00:28:11.039 --> 00:28:12.480
Well, we never know.
00:28:13.000 --> 00:28:34.569
And so I think that everybody wherever you're at if you're married you have children you really need to do it now because it's easy to change it and update it but it's it's it's really awful yeah go back in time and and I wish they had documents and things in place and plan set.
00:28:34.569 --> 00:28:39.030
ah Yeah, I think that that makes total sense.
00:28:39.030 --> 00:28:47.923
And I think ah I have had a close friend pass away from a drunk driver when we were juniors in college.
00:28:47.923 --> 00:28:51.374
And I think that experience really shaped a lot of.
00:28:52.074 --> 00:28:59.426
My outlook on life as well, and that, you know, death can happen at any time, even when you're young.
00:28:59.426 --> 00:29:12.904
And perhaps that also influences, you know, what I do now, because I think death is not necessarily something super scary to me in the sense that we all die.
00:29:12.904 --> 00:29:22.856
It's just a matter of time, but it's about, you know, how do we better live with the time that we have not knowing what the future may hold.
00:29:22.856 --> 00:29:39.134
I'm curious, how would you, what advice would you give to say a caregiver who is taking care of someone who has dementia, may not be able to really communicate what their needs are, what their wishes are, or even who they want to say goodbye to?
00:29:40.663 --> 00:29:50.585
And that's a challenge, and you know as well as I do, that's a tough part when there's no, um whether it's verbal or even able to write because they often can't write anymore.
00:29:50.585 --> 00:29:53.925
um I think the first thing, Dr.
00:29:53.925 --> 00:29:55.465
Mia, is grace.
00:29:55.707 --> 00:30:03.307
We have to have grace for ourselves when we're doing the caregiving, and we have to have grace for the person that we're caring for.
00:30:03.347 --> 00:30:10.529
And a big part of that to me is that when you're caring for them, you need patience.
00:30:10.890 --> 00:30:13.171
as much as we can and that's hard.
00:30:13.171 --> 00:30:15.651
I'm not always a patient person, but I try.
00:30:15.810 --> 00:30:22.393
But they no longer can control what they're thinking and what they're doing and what they're feeling.
00:30:22.393 --> 00:30:30.414
And so, you know, in the instance of my dad, he came out with, you know, more negative ways of things coming out.
00:30:30.414 --> 00:30:31.935
And it's very difficult.
00:30:31.935 --> 00:30:40.917
You know, my mom, you know, they were almost 40 married 40 years to see what they've come through and where they're at at this end.
00:30:41.006 --> 00:30:43.405
It just doesn't seem right.
00:30:43.405 --> 00:30:57.786
But I think if we can step back as much as possible, whether it's 15 minutes, 30 minutes, an hour is optimum, but you have to take those breaks to walk away from it because it will build up.
00:30:57.786 --> 00:31:01.286
Even if you're trying your best to go, it's OK.
00:31:01.326 --> 00:31:06.205
We tend to let it build up in us, and that's not good for us.
00:31:06.586 --> 00:31:08.086
And I think.
00:31:08.307 --> 00:31:16.460
Even my mom made the comment when I talked to her, she said it is a living hell watching them go through all of this and knowing you can do nothing about it.
00:31:16.460 --> 00:31:28.105
um And having gone through it more than once, um she said the best thing you can do is love and care for each other and know that it's never going to be easy.
00:31:28.105 --> 00:31:32.346
There's no easy way for it to be done.
00:31:32.367 --> 00:31:47.118
So um I think when you go into it, if possible, my view would be that if you can have four or five people, whether it's church, family, friends, that can come in and help you.
00:31:47.278 --> 00:31:55.263
know, it takes for dad when they wanted us to look at taking them home, two people had to be there 24 hours a day.
00:31:55.903 --> 00:32:01.548
Well, that's not always possible because most are still working and have kids, et cetera.
00:32:01.548 --> 00:32:06.220
So even if you can get help for an hour or two and get a break.
00:32:06.220 --> 00:32:08.291
and then maybe later in the day you get it.
00:32:08.291 --> 00:32:15.537
But um often you'll find people that will help you that can love and care for someone in these situations.
00:32:15.597 --> 00:32:17.739
So don't take it on yourself.
00:32:17.759 --> 00:32:21.102
It's gonna take you down quickly, health-wise.
00:32:22.057 --> 00:32:30.605
Yeah, I think that's where so many caregivers really struggle, whether it's financially or just being more socially isolated now.
00:32:30.904 --> 00:32:42.675
Having that community to rely upon is more challenging than ever compared to when, you know, people lived more close to their extended family.
00:32:42.795 --> 00:32:55.351
And this is where I think asking for very detailed and specific asks, like, you come for an hour on Thursday while I go?
00:32:55.351 --> 00:33:02.615
um A lot of times I know a lot of my patients don't want to ask because they don't want to be a burden for other people.
00:33:02.615 --> 00:33:07.636
And so it's the primary caregiver that takes it on all for him or herself.
00:33:07.636 --> 00:33:33.874
um And that it's easy for people who are not in that situation to say take a break, but it's definitely um more difficult for the person who is doing that caregiving to have to step back and take a break and find someone who's willing to help as well as being able to financially afford that help.
00:33:33.874 --> 00:33:41.598
All of that is where I think as a society, we could do better at supporting caregivers.
00:33:41.702 --> 00:33:48.646
who are doing this extraordinary work um every day, day in and day out and without a break.
00:33:48.646 --> 00:34:15.224
um I think one other thing I wanted to comment on was just about the fact that for people living with dementia, now, especially at the stage where a lot of caregivers are getting involved, there's nothing that's going to make them better in terms of that disease and it is watching the decline, whether it's slow or fast.
00:34:15.224 --> 00:34:19.166
And sometimes people have even asked like, how could I do this work?
00:34:19.487 --> 00:34:25.449
Because it is watching people decline and telling people that they have dementia or memory changes.
00:34:25.449 --> 00:34:31.532
And I think to me, it's always been about presence rather than a cure.
00:34:32.722 --> 00:34:47.065
The being present to the best of our ability, being that bearing witness to what they're going through, whether as an end of life doula or medical professional or even family member.
00:34:47.065 --> 00:34:49.498
I think that is such a sacred thing.
00:34:49.498 --> 00:35:07.507
And it's not something that is a cure, obviously, but it's definitely something that people need and may not have anyone to even bear presence or to be along for that journey.
00:35:07.507 --> 00:35:22.235
And so to me, I find it that if I'm able to be part of the journey and bear witness and help a little bit, to me that is still a worthwhile thing to do.
00:35:22.235 --> 00:35:27.782
um And I'm sure you feel the same way, otherwise you wouldn't be a doula.
00:35:27.782 --> 00:35:28.922
Yes.
00:35:28.922 --> 00:35:35.686
And I think, you know, to your point, for me, I often have people go, well, why would you do this?
00:35:35.686 --> 00:35:37.507
You know, this is death.
00:35:37.507 --> 00:35:43.548
Well, to me, death should be celebrated because this person was in my life.
00:35:43.548 --> 00:35:46.670
Yes, they've said things that hurt my feelings, but they've also taught me things.
00:35:46.670 --> 00:35:52.873
And sometimes it's been 10 years or more later and I go, oh, I heard the words, but I didn't hear the meaning.
00:35:52.873 --> 00:35:54.572
And it sinks in.
00:35:54.653 --> 00:36:14.300
So um I think those moments are important, but I also think when you can be present and show love and care, no matter how little you know about a person, that is something they take in as a blessing because it's hard for a lot of people to do that and it's fine.
00:36:14.300 --> 00:36:27.117
Not all of us are made the same, but I am ah obviously blessed and honored every time someone needs me to be with them because It is that final transition.
00:36:27.117 --> 00:36:28.509
It's a tough one.
00:36:28.509 --> 00:36:34.672
And if I can make the smallest difference in that transition, then I've done well.
00:36:34.672 --> 00:36:46.402
So I think if we can go into it with being present and love and caring and try to put the other kind of aside of what's really in front of us, it will help you get through it.
00:36:47.476 --> 00:36:49.088
Thank you for that, Karen.
00:36:49.088 --> 00:36:50.958
And thank you for those who are listening.
00:36:50.958 --> 00:36:59.094
know this, you know, talking about death is never easy, but I think it's really what needs to be talked about more often.
00:36:59.094 --> 00:37:04.498
So thank you for joining us and ah we will talk to you next time.
00:37:04.498 --> 00:37:05.637
Thank you.
