Episode 2 - Hospice Is Not A Dirty Word

🎙️ Episode 2 — “Hospice Isn’t a Dirty Word: The Truth About Palliative Care”

Too many families hear the word hospice and immediately think it means the end. In this episode of Caregiving in the 21st Century, Tiffany Auvil, RN and caregiver advocate, breaks down the truth about palliative and hospice care — what they really mean, who they help, and why reaching out early can change everything.

Tiffany shares her personal story, clears up the most common misconceptions, and highlights the incredible work of West Virginia Caring, a local nonprofit that provides compassionate end-of-life and family support services.

If you’ve ever wondered when to call hospice, what palliative care includes, or how these programs can help caregivers as much as patients — this episode will give you clarity, hope, and real resources.

💜 Topics Covered:

• Why hospice doesn’t mean giving up
• What support organizations like West Virginia Caring actually do
• How early involvement brings comfort and peace of mind for families

🎧 Listen in and help us change the conversation — hospice isn’t a dirty word.
Learn more or donate to support West Virginia Caring here: https://secure.qgiv.com/for/wvcaring/

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Transcript

SPEAKER_00: 0:01

All right. So we're back for episode two. And um first I am so grateful that even one person has watched or listened to this podcast. Um, but to have several people reach out to me and just thank me for it or say that it meant something to them, that I just thank you. And that's why I'm here and that's why I'm going to do these episodes because I really feel like we don't talk about it enough openly and raw. So that's gonna bring us into this subject for today. And we're gonna, I guess, start off heavy with the fact um tomorrow I am uh through one of my through my business with Wicked Highland Creations, I am sponsoring a uh event through West Virginia Caring. And West Virginia Caring is a palliative and hospice organization um where I live in North Central West Virginia. And the reason I really feel strongly about this and I wanted to talk about this was one, the event tomorrow for um that organization really has it in the forefront of my mind. But I also feel like over time, and maybe it's just been that way since the beginning, we've treated the word hospice as this dirty little word, and we need to really reverse that script. So um my husband, Dave, uh, he for the most of his illness was very well when it come to being able to do things. Um he built a playground pretty much in my backyard for my son. Um, we have a house that's elevated six feet due to um flood zone elevation requirements, and he put a turbo slide off of the deck. Um, he built a swing set off of the deck. Um he uh he he was able to continue to really do things um maybe not as well as he wanted to or at the pace he wanted to, but all through his treatments and his battle really until uh winter of 24. And what really caused it was he um had an injury where he cut his hand and it kind of put him out of commission for a while, and then it was just the cancer progressed and he didn't get to go out as much. And in about this time last year, it was around Thanksgiving, he had another PET scan, and it looked like the cancer was starting to spread more in his abdomen, and this would have been the renal cell cancer, and it was affecting his colon, or at least the terminology that the radiate radiology uh radiologist, sorry, that the radiologist used when he interpreted the findings was invading the colon, that there was a tumor invading the colon. And I remember internally and somewhat externally freaking out because in my mind, invading the colon means it's like inside the colon or it's cutting the colon off. He's gonna not be able to have any bowel movements, and we were going through like, what do we do? We were reaching out to his doctors, and I sat down with him one day and I was like, I think it's time that we put you in hospice. Um, and not the full hospice, I call it, but like the decaf hospice, the palliative care side. Um, and at first he's like, No, I'm not ready for that. And I said, Well, honestly, it has nothing to do with you. Um, I'm getting completely selfish when I ask about putting you in hospice. It's because I need to have someone there to help me if and when things go bad. And um my grandmother at this point had been on hospice palliative care side for six to nine months. Um and so I pointed out, I was like, look at my mom Brenda. I said she's been on it. It's not meaning that you're dying tomorrow or you're dying next week, it's just giving us resources that I may need to help me and to help Finnegan. Um, and he relented, and he's like, Okay, okay, we'll do it. And so he was able to allow me to contact hospice, and we got the referral in, and they came into the house, and the nurse came in, which we live in a small town, so we knew the nurse, and she sat down to talk to him, and they gave him information, they gave me information, and both of us ultimately knew how his cancer was progressing and that he would pass away. Um, and we would talk about it. It was really hard for us to talk about it, but you know, he um even at this time we've realized like he didn't have a will, so we had to create a will. Um, and I'll read you his will one of these days on here, but essentially in his will, I had to uh promise to keep his truck, which he just bought in September of 24. It was a 23 model F-150, it's the truck truck of his dreams. Um, I have to keep it as much as I can, essentially, um, to give it to Finnegan when Finnegan's old enough to drive. He's five now. He was four then. So um, yeah, we talked about it, and I told him, and I mean it to this day, and until Finnegan is 16 that that truck will be his. Um but anyways, um so having those conversations is hard, and when you mention the word hospice, it gets even harder because people's like, oh my god, I don't want to talk about hospice. That means I'm dying tomorrow, or you know, I'm giving up, and it has nothing to do with that. Hospice is there for support. So um, just to give you some context with Dave, um he signed up for hospice and we were able to get the palliative decaf hospice, if you want to call it, um, in with West Virginia caring that last November. So uh well, December, because it was around Thanksgiving when we found out the bad news. Um, so almost a year ago. And the nurse would come in once a month if that, he'd get a phone call here and there, ask how he's doing. But when tables turned in on April 1st or April 2nd, when we realized that the cancer in his brain was back and that his cognitive function had declined. And at this point, like he couldn't even say words. Um, all it took was a phone call for me to say, hey, I need help. And I had a nurse in this house. Now, mind you, I'm a nurse, um, but I'm also the wife. And so I had another nurse in the house two or three times a week, at least checking in on me, checking in on him, checking his vitals, making sure I had what I needed, um potty chairs that we were able to get, um incontinence things as we ended up having to go that route for um a short time. And I just I wouldn't have been able to really do it without them. And I remember one of the nurses um there towards the end when his condition really worsened, and I knew like we were days away. And I was talking as the nurse, and she said, Tiffany, you you gotta stop it. You're the wife. Let us be the nurse, let us be the care team, and you you you sit back and let us do it, and you you be the wife. And having that ability to do that and that freedom was really the best thing that I could have done. And it took some convincing um for Dave to allow me to do it, but I think he would agree 100% now that that was what we needed and we did the right thing. Um, my grandmother, I mentioned she had been on it for like nine months before Dave. Um she was on hospice for a total of 18 months, I think. 19, I think it was 18 months. She passed away um September 12th of this year. And once again, you know, as her health started to decline, um, she wasn't able to ambulate as much. She wasn't able to get out of bed. You know, they were there helping my mom, who was the primary caregiver, uh, at least two or three times a week, um, if not more. They would tell us, you call us every anytime, day or night, texting us throughout the day, hey, are you guys okay? Do you need anything? Um, even to the point where my mom before my grandmother would get so bad, um, where uh towards the end, but you know, when you're a caregiver with someone and you're next to that person for five, six, eight weeks straight, and you don't have a life anymore because that person's your life, you need a break. Um, and I would tell my mom that I'm like, you need a break. You cannot continue this because it's not good for you and it's not good for her. You you just I mean, heck, any of us, if we're around the same person for too long, you get tired or annoyed or both. And it's okay. That's human nature. And so one of the really cool things that hospice had, or West Virginia Caring has, is they have a house over um just about 22 miles away where um my mom would be able to take my grandmother and she would essentially get respite there for five days, or my mom would get respite. You know, it was the five days that, or five four nights that she was actually able to sleep in her own bed uh because my grandmother needed full-time around-the-clock care since her fiance passed away the November before. And so my mom was there 24-7, 365 days a year trying to care for her mother. And I mean, I don't know about any of you, but as a parent myself, I am happy to send my kid to school because there's just times where you need a break. And there were times where my mother needed a break, and she probably needed it more than she actually took it. But having a place where you can have your loved one go where you know 100% that they're gonna be taken care of, um, and it's not a hospital, it's it's nice, it's comforting, and it's it's peaceful for you to know that you're not doing something wrong. And you know, that really comes back to my next thing is you know, as a caregiver, talking about hospice or palliative care or decaf hospice, however you want to call it, that honestly is not something that should be brought up as a hey, you need hospice, meaning the person who's ill. Because really, they're there for them, but they're mainly there for you. And you need the support more than you will ever care to admit. Um, most of you listening right now are probably caregivers. And if you are in a situation where you're caring for someone, you're like, I got this, and trust me, I was the same way every day. Uh, people are saying, 'I got you, you you're so strong. How do you do this?' I'm like, I got it. I gotta do what I gotta do, and you do, but you also gotta take care of yourself. Um, and that's something I don't think I did as much as I should have. Uh, but I'm working on that now. And allowing yourself some respite. Um, even if it's just for one night, there's nothing wrong with that. Or if you want to go out and have fun and laugh, do it because you have got to take care of yourself. You can't pour for from an empty cup, and you don't want to have resentment towards that person in the end because you gave so much, and I have no resentment to Dave. Um, everyone tells me that I've done as much as I could have for him, and of course, as you know, anyone else, I'm thinking, well, maybe I could have done this and that, but there's nothing else that I could have done. Um, and I know that, but having that support there really, really helped. And so if you're local, you know, there's multiple different organizations around, check them out. Um, if you're not local, go online and look. Uh but the truth is, is we have got to stop feeling like hospice is a dirty little word. Um you can be on hospice or a form of it for years. It doesn't mean that you're dying tomorrow. And the support that they give you and your family members is just remarkable, you know. Even like Dave at the end, um his last week, he passed away on a Friday, and he was he went to bed Monday night and he never got out of bed after that. And like I didn't even have to worry about medicines that he might need for pain or anxiety or secretions because of West Virginia caring, I had all of that already. Um, and I was able to administer to him what he needed to stay comfortable, and that is the best thing because I know he did not suffer. So do me a favor. Take some time today, tomorrow. And even if you're caring for someone who's nowhere near hospice, just take some time for yourself. Uh, and it could be just sitting alone outside for five minutes, breathing in the cold, crisp air that is this first, you know, snowfall this week that we've had here in West Virginia. Or maybe you're somewhere on the coast and you can, you know, get the salty air of the ocean near you. Or maybe you just go into the bathroom and sit on the toilet and shut the door and just pretend that you need to use the bathroom just so you can get that five-minute break, but just take time to relax and breathe. And um one of the things that I really did, because I never been someone who would admit that they were ever depressed or had anxiety until the last two years, two and a half years, but my anxiety has developed, and um I learned too that like box breathing, they call it, was really helpful for me and is really helpful for me as I continue with that. And that's where you like breathe in for four seconds, hold it for four seconds, breathe out through your mouth for four seconds, hold for four seconds, and then in through your nose again for four seconds, and you continue that for two or three breaths, and you're just bringing in all that like oxygen to your everything, so that way you can actually just calm your own nervous system. So, all right. Um thank you again. I appreciate you, and um I uh will be back tomorrow or in the next couple of days with another episode.