Caregiving for Your Parents without Losing Your Mind - with Lili Udell Fiore

Hello, and welcome to today's episode of Thrive After 45. I'm Denise Drinkwater, heart whisperer, midlife mirror and mentor. And every week I am so honored to share space and energy with inspiring guests whose stories reflect so many possibilities of thriving beyond 45. Together we'll uncover the whispers of the heart, the power of midlife transformation, and the wisdom that fuels expansion. What if the conversations that we avoid the most are the very ones that could bring the greatest peace to the people we love? It is such an honor. A privilege to welcome Lily del Fre to thrive after 45. Today. Lily is an Amazon bestselling author, speaker, caregiver, advocate, certified end of life doula, certified dementia practitioner, and master grief coach. And she is on a mission to change the way we approach dementia, caregiving, and end of life planning. Raised by a father who was an EPIs Episcopal priest and hospital chaplain. She grew up witnessing compassionate care in action. That understanding became deeply personal when she spent over 12 years caring for an aunt, father, and mother n navigating dementia. Family dynamics, medical advocacy and loss. Through that journey, Lily learned that with structure, honesty, and the right support, caregiving can shift from overwhelming to meaningful. She founded much love. Lily to provide practical guidance, resources, and tools that replace fear with clarity and confidence. Her message is simple and powerful. Planning ahead is not morbid. It's love. In midlife when so many women are caring for others. This conversation is absolutely essential. Lily, I am so grateful to have you here today with us. I know we are gonna unpack so much. So thank you for your time, energy, wisdom, and expertise. Well, thank you so much for inviting me. We talked about this last year. And you are such a popular host that it's taken a while to get on on the schedule, but I'm delighted and these conversations are timeless. Yeah. So it doesn't matter when you hear this podcast. Yeah, it is. Relevant always. So isn't isn't that the truth? Right. We are always dealing with how to support others in caregiving roles and in particular us as midlife women. Yes. That sandwich generation, isn't it? It is indeed. It is indeed. So. There are, so I could talk for hours, um, obviously certifications in three areas. Yeah. Um, this is my passion. Mm-hmm. Um, but what I wanna hit on today are some of the bullets points mm-hmm. That I think are just tot amount to survival and to just creating the most sacred, holy, or. Spiritual if you don't believe in God. Yeah. Um, experience for you and your loved ones. Mm-hmm. So I think, um. You want me to just dive in or, yeah. Uh, I love diving in. That's what we do here. Okay. We don't go into the fluff. We go into the meat and potatoes. Yeah. Oh, good. Good, good. So one thing that I did not realize myself is that if your loved one has already express their wishes mm-hmm. That they want their life to end whenever it naturally happens, be it stroke, heart attack, whatever. Mm-hmm. If you call 9 1 1 because they're unconscious or they've fallen, okay, unless you have the end of life. Or most order that is signed by their physician and is usually printed in a very bright, on a very bright piece of paper and put on the fridge with a magnet. Mm-hmm. When you call 9 1 1, they're legally obligated to do everything in their power to revive your loved one. Um, unless you have that form mm-hmm. Previously signed by the doctor saying that they are do not resuscitate. This is so, so, so important. Uh, when an older person or someone who's has frail bones. Is given CPR. Mm-hmm. Their ribs often break. Yeah. They end up with a lot of bruising. This is not an easy thing to come back from. Right. This requires a lot of healing, so if your loved one has already accepted the fact that they're not gonna get better mm-hmm. So important to sit down with them and have the conversation, you know, Hey mom, do you really wanna be here? Do you really wanna extend this? Mm-hmm. Or do you wanna go be with your parents, be with your siblings, be with your spouse? And well, if you do, then let's go ahead and get this signed form. Put it here. Mm-hmm. And if you want to be really proactive, keep a copy in the glove compartment, send it to the hospital er, you know, for your medical records. Um, make sure you're attending well, they should have a copy because they, that's the doctor that should have signed it and send it to your local ambulance. Who would be the people that would pick you up? Sure. And just try to cover your old, all your bases. Mm-hmm. My number one priority with caregivers mm-hmm. And with families is to make you as bulletproof as possible so that later on you have absolutely no regrets. We all do, hopefully the best we can with what we know, but not knowing. And not being able to do, and then having the hindsight can be so painful. Yeah. And so hard because we don't know what we don't know. Right. And since, and I didn't know certain things and my dad taught death and dying at the UVM Med school, you know? Right. Yeah. Um, so one of the first things I always say is the moment. Your friend, loved one, spouse, child, parent, mm-hmm. Has been given a diagnosis mm-hmm. Where they're not gonna get better. Okay? Mm-hmm. If you know this to be fact, and if they are aware of it mm-hmm. Um. And if they have dementia, then you need to have this discussion or the POA, the healthcare power of attorney needs to have it with their current attending doctor. Mm-hmm. And you need to ask the doctor, sit down with your loved one. How do they wanna die? Do they wanna die in a hospital? Do they wanna die in a hospice? Do they wanna die at home? Of course, the caveat. That you cannot always predict when things are gonna happen. Sure. So if we have choices mm-hmm. What, what are your wishes? Um, do you wanna die alone or do you wanna die with strangers with you because it's too hard for you to be there with your loved ones? Mm-hmm. Or, or do you wanna die with your loved ones? Right. Great questions to ask. Right. So one of my dad's favorite sayings was, remember half of all doctors graduated in the bottom half of their class, and yet we give them credit for all being valedictorians. Right. So I personally, because obviously I was raised Episcopalian. Mm-hmm. For me. My gut feeling is God talking to me, whatever it is for you, but your gut, right? They've proven it's like another brain. It has so many sensory things. Yeah. Right. So if your gut says, I'm not really sure how I feel about this doctor, sit down with them and say, how? How do you envision my loved one leaving this earth? Mm-hmm. Mm-hmm. It's so important to remember that. Yes, they might have been in on the bottom half of their class, but if they're not comfortable with death because they spore the Hippocratic oath to do everything in their power to extend life. Right. That's, that's just the way it is. Right. Many, many, many people are lousy dealing with death, and that includes doctors. Mm-hmm. So if they have not come to terms with death and mortality in their own lives mm-hmm. Then how the heck are they going to ever do it with your loved ones? Right? So if there's a disconnect mm-hmm. Absolutely. Call up the insurance company, find out who the palliative care doctors are and get your parents switched or your loved ones switched to a palliative care doctor that will not, who understands that they can't get better. Right. But that we can do a lot of things to make the quality of their life so much better. Yeah. So much better. Yeah. I often say do not use the word hospice. Mm-hmm. With older people especially. Mm-hmm. It, to them it's like the word cancer was when I was a kid. It was scared to death. Yeah. My dad brought hospice into Vermont, um, with a social worker back in the seventies. Hmm. Two weeks before my dad died and my mom for the first time saw the hospice people. Mm-hmm. She was like, why are these hospice people here? And I was like, um. Yeah, because dad's dying mom. Yeah. And it was too hard for her. Mm-hmm. And she lived her whole life being married to a man who was a hospital chaplain and taught clinical pastoral education, taught people how to deal with this stuff. Yeah. So it's the old adage of the cobbler's children having no shoes can be true of their spouses and other family members. So that's really important. Get. The other thing I want people to understand is I have seen a lot of families pull mm-hmm. Things that they really shouldn't pull. So the moment your loved one has been diagnosed with a cognitive issue mm-hmm. It needs to be. Dealt with with an attorney and you need to officially accept power of attorney and make it, you know that you are now accepting it, blah, blah, blah. Mm-hmm. Because I have heard of so many children who, when stepmom or stepdad is away mm-hmm. They will take their parent with dementia, bamboozling, and. An attorney into thinking that they're copacetic. Right. And, and maybe the, the attorney knows and maybe they don't. Mm-hmm. Depends on how alert they are and get a whole new set of. Documents. Yeah. And a will. Yeah. And so then people come back and find out that the kids step kids have emptied the bank accounts. Mm-hmm. Or the kids have emptied the bank accounts. Mm-hmm. Um, another great thing to put in a will, if you are worried about people contesting it, is that anyone who can test the will will automatically only inherit$1. One of my friends did that, her mom did that. Mm-hmm. And I thought that was brilliant. Mm-hmm. You know, so it, yeah. It kind of makes you bulletproof again. Right, right. Just a quick question before you go on, of course, because something that's coming up for me, and you're talking about loved ones and, you know, having the conversations that are so important so that wishes are, um, followed, right? Yes. What do you do in the case? Or what ideas do, would you be able to share in the case where, um, those who are in the, in the not final stages, but are capable still, but are still not interested in having conversation around it? Because it's the fear of all of it. I just, we don't talk. We just don't. Right. Nope. Just do whatever you're gonna do kind of thing. Yes. There are lots of people like that. Mm-hmm. Um, depending on how close the family is or the friends, if you are the legal power of attorney or if you're the one who seems to be catching all the responsibility. Yep. I would, I highly re uh, have you ever heard of Don Miguel Ruiz and the Four Agreements? Oh, yes, yes, yes. The four agreements. Yep. They are sacrosanct in my perspective. Don't assume, do your best, use your words. Yep. Um, all these things, I think that should be, everybody's on everybody's kitchen go-to go-to, right. So, because it saves you so much time and energy. So in the spirit of that, I always direct people or my clients mm-hmm. To please. Get everybody's email who has a reason to know? Mm-hmm. Send them an email saying. I know I'm not, well first, if you're not the power of attorney, have the discussion with the person who is privately, right? Right. We never want to embarrass anybody or put anybody on the spot, um mm-hmm. Because maybe they understand that they are the power of attorney, but. They don't wanna cope with it, right? Mm-hmm. Yeah. So, and, and that's okay. So when my aunt needed power of attorney to be enforced mm-hmm. It was her husband first. Mm-hmm. He had died 10 years before. Right. Then it was my mom. Mm-hmm. My mom said, I have all I can do to take care of your father. So then it fell to me. Right. So I used to worry that if I got hit by a bus Yeah. Who's gonna be responsible for my beloved aunt that has Parkinson's and Parkinson's dementia. So if you only have one or two people on your documents, please go get another one or two added. Mm-hmm. And anyone removed that can no longer handle this role. Sure. Yeah. Um, that's really important, but mm-hmm. I, I regress so, so many angles to talk to, right? There's so many angles about this, and obviously I love this subject and it's not most people's favorite subject, so whenever I get a chance to talk about it, it's like effervescent. Um, so send a letter out to these people and say, this is what's going on. Mm-hmm. This is where I need help. Mm-hmm. If you can. Support, uh, with time with money. Mm-hmm. Mom's house needs to get cleaned. Mm-hmm. Or dad continues to pee all over the bathroom because his aim is gone.'cause his site is gone.'cause his coordination is gone. Sure. Um, yep. Mom doesn't wanna clean that up anymore. Mm-hmm. You know? These are the things. It's the little things, and in my book right Caregiver's guide, I have a trigger worksheet so that you can figure out what are the things that you absolutely can't stand doing. That's part of caregivers taking care of themselves and understanding boundaries. Right. Love that. Love that. Yeah. Thank you. And the other thing is to understand is that those family members that you expected to be there and help mm-hmm. Carry the weight of mm-hmm. The situation with your loved one. You do not know what's happened to them in their lives. Right. You do not know. Yeah. Never assume going back to the four agreements, right. You do not know if they were abused mentally, physically. Mm-hmm. Or even if that person didn't do it to them, maybe that per they thought, that person should have known. Mm-hmm. Yeah. And so they have an expressed anger. Yeah. So there are all these landmines and many people judge and hold grudges. Mm-hmm. And drop family members and friends because you didn't do your part Right. To care of whoever. Right. But it may not, I mean, if, if it is that they're jerks, well then fine. Let the universe deal with that. Mm-hmm. Meanwhile. By sending out that email and saying, these are, this is what I need. These are the problems. Mm-hmm. Mm-hmm. If you can help me now with mom or dad or whoever. Mm-hmm. Great. Mm-hmm. If not, if you don't wanna be on this email list anymore. Right. Please let me know. I just am trying to keep the lines of communication open. Yeah. And, and if you later on have more time or wanna help with something mm-hmm. That's great. Right. And make sure you say no judgment. Right. Of course. It really sucks if you're the one that's left holding the bag. Mm-hmm. And nobody else is willing to pick anything up. So yes, you absolutely have a right to that anger. Yeah, get a therapist and deal with it. Mm-hmm. But do not make your life harder, right? Because you are constructing all these stories around. And that again, goes back to the four agreements. Um, we have no idea. Right. What other people have been through, and especially as we get older. Mm-hmm. There are so many things that cause grief and that are losses, even if it's something good like, hey, I got a great promotion and a huge raise, so we're leaving the neighborhood we raised our kids in and we're going to a different one. Mm-hmm. Or I'm going to a different city. Yeah. And now I've lost all my roots, my church, my whatever, my favorite hangouts. That's loss. Yeah. Yeah. That is really loss. And very often when we're in the middle of being in the sandwich generation, we do not actually have, or we do not permit ourselves the time to grieve. Mm-hmm. All the different losses and the friends that, that die or. Your favorite movie star who you loved. Mm-hmm. You know, my daughter and I were heartbroken when Diane Keaton died. Yeah. We adore her. We watched her movies, our whole, you know, yeah. My daughter's whole life. Um, those things all add up. Yeah. Yeah. And. Sometimes that will paralyze a person and make it if they haven't dealt with that whole thing and they've got a whole thermos full of loss. Yeah. The last thing they're gonna be able to do is be proactive with your loved one because they've never dealt with the other losses. Yeah. And it's not that they're bad, it's not that they're jerks. Yeah. It's, they're just in a different place than you are. Right. Forgive them. I saw a great bumper sticker the other day. It said, treat everybody with love. I'll sort it out later. God. And I just thought that was perfect. Yeah. You know, we don't know what we don't know. Mm-hmm. So the other thing I want people to understand is when somebody gets a diagnosis, that same circumstance applies. Mm-hmm. So when we were young and our mom was diagnosed with aplastic anemia, she had spent years doing all sorts of stuff for the town. Yeah. You know, involved in every. Thing at school, the Girl Scouts, whatever. Yeah. The moment people found out that she was given six months to live, even though she didn't die happily till much, many decades later. Mm-hmm. A lot of people stopped calling. Hmm. Some of it was purely selfish because they couldn't Sure. Mom could do anything for him anymore. Mm-hmm. And some people it's, it becomes threatening. Yeah. The priest's wife who does everything for everybody gets Yeah. A plastic anemia and she's that good. What's, yeah. I don't think I'm as good a person as her, so. Mm-hmm. Damn, what's gonna happen to me? And this is not necessarily conscious. No, of course. It's just, it's just part of the fabric of our lives. Yeah, I think what you're saying is so key for our audience in particular, because we tend to carry so much, and like you say, they're layering and layering and layering, and we just keep forging ahead. We're gonna, we got to do, this is what we do. We care for every, we make sure everybody else is okay and then we. Come to a brick wall that we hit and we don't even know what's going on. But when you go under those layers, so I love what you're saying about get support for yourself as required, right? Yes. And communication is what I'm hearing a lot of in your conversation today, the, the importance of communicating and not, um, assuming that people who aren't. Yeah. And do not wish and hope that's wasted energy. Hmm. People are where they are. You sending a rage, guilt filled email is not going to move them on. Right. The meter, of course, it just isn't. Mm-hmm. So. If you wanna alienate these people, then go right ahead there, but Yeah. But if you want to preserve the relationship, and I promise you, whoever the loved one is, would never in a million years be okay with your relationship with this other person that they love ending because of them. Right. Right, right. That's, um, so that's really, really, really important. Mm-hmm. Um, to just level set everybody. Yep. Don't keep spending time wondering, oh, is today the day that cousin Andy, who's always loved mom, is going to pick up the phone and call? Assume, yeah. Once you get that letter out, you know what you're dealing with. Yeah. And you have. And you don't have to waste any more time and energy. Yeah. Yeah. You know? Yeah. Yeah. If you need resources, call up the high school. Call up. You know what kid is looking to make money by raking up yards. Mm-hmm. Or yeah, mowing the lawn or, yeah. Has a license and can't wait to use it. Right? Yeah. And you pick up food for your parents, right? Yeah. Perfect. Things like that. Yeah. What starving college student, who is a lovely person, is willing to live with your parent or your loved one rent free, just so that there's somebody there. Right. Yeah. Yeah. Really important. Absolutely. Absolutely. Yeah. Are there some key things you've mentioned about bulletproofing yourself with caregiving? Are there three. Key things. You've mentioned some I know, and I know there's so many, but are there, there are three. Are there three that you noticed throughout your years of experience that really these are up there in terms of priority, let's say generally across the board. Yeah. Having to go over what we've already talked about. Yeah. Having the DNR if your loved one does not want to live anymore. Yep. When that naturally occurs, have that piece of paper signed by the doctor so that you can call 9 1 1 and have them. You know, make your level more, honor that. Yeah, honor that. And if you can get ahead of everything and talk to them and interview their doctor about that and transfer them to an attending who understands death. Right. I had a dear friend whose parent was stage four with cancer, was in the hospital. Mm-hmm. And. Nobody ever sat down with the family to say that their parent was actually dying. So when my friend started hearing the, what's often called the death rattle from her parent, yeah. Yes. She ran outside and told the nurse, well her parent was still a full code. So yeah. Instead of that parent having a peaceful. Ending. Yeah. They were pounded on, on their chest. Their family wasn't allowed to be with them. That's not a way to die. No. Yeah. It just isn't. Yeah. So, and I've, and if your loved one, one of the things that is so important is with cognitive decline. Mm-hmm. If your loved one is chosen. S and you know this to be a fact. Yeah. To not be intubated. Yeah. Okay. Not be put on a, a, a respirator mm-hmm. If they're not able to exist without it. Right. Under their current condition, like being septic or kidney failure or pneumonia, whatever it is. Mm-hmm. Do not allow them to be intubated. I have seen people have horrible deaths because the family consulted palliative care but did not move their loved one over to palliative care or hospice. Mm-hmm. And many doctors who were not oriented in that mm-hmm. Who are just general medical doctors, are not okay with pulling plugs and. Once you start the process of putting someone on a respirator, their kidneys will begin to fail. Their body will start to retain fluid. Mm-hmm. They will look like the pil. Very dope. Right. And if they start to have kidney issues, then they can't. Have morphine because morphine can cause seizures. So then they have other painkillers. Right. Which, in my opinion, from what I have personally seen, I'm not a doctor, not a, are not as effective as morphine. Right. Now, if you're allergic to morphine or you can't take it, then that's the way it is. Right, right, right. Yeah. But don't. The, some of the most sacred times in my life have been when I was with my aunt, my dad, my mom, and other clients when they died. And it can be such a loving, calm, peaceful thing. Um, I, I find that really important. The other, if your loved one. Has, has any kind of cognitive issues or has a bad diagnosis, get the guns out of their house please. Mm-hmm. Get the bullets out. Get the guns out. Mm-hmm. I don't care if you have the cop, uh, you can call your local police station and they'll just take them for you. Mm-hmm. And maybe they'll sell them for you and, or maybe they won't. That's very random. Right. Right. You want the firearms out of the house. Mm-hmm. Especially if your loved one has cognitive issues. Mm-hmm. Because some of the different dementia diagnoses that people can become violent, it is not their fault. Right. Just that part of their brain no longer works. Mm-hmm. Um, with dementia. Do not ever, unless some doctor who really knows their stuff and your gut says it's good, never reorient them ever. Mm-hmm. Take them where they are, be with them where they are. Mm-hmm. I was taught very early with Ann Ester when she had mm-hmm. Parkinson's dementia by some of the nurses that they don't remember what you said, but they remember how you made them feel. Yeah, that makes sense. It makes a lot of sense. Yeah. Um, so, you know, they'll ask you crazy things sometimes. Yeah, yeah. Um, the thing to remember, is anybody gonna see this zoom? Yep. Yep. It's gonna be on YouTube. So there is a visual piece to it. Yeah. Okay. So imagine this is our brain. Okay? Yeah. We have. Birth kindergarten. Yep. Elementary school, you know, college tech, school, marriage, whatever, and then eventually death. Yep. All these things are linear for us. Right. Someone who has dementia, everything's touching everything. Wow. Okay. Yep. And that is why. Mm-hmm. They will be. Out of sorts sometimes. Right, right. So we had my dad under full care. Mm-hmm. On the full, he was bedridden, um, side of the nursing home. And our mom was on the assisted living side. And I bopped in to see my dad one, one time, and my father was blind from glaucoma damage for the last. Couple decades of his life. Mm-hmm. And I said, Hey Daddy, I'm going to go visit mom, but I'll on the other side, but I'll be right back. All of a sudden, my father was back in seminary in New York City and he's like, yep, Lily, no women aren't allowed in the seminary. Your mom can't be here. And I just said, oh daddy, I'm so sorry. I misspoke. I meant the hotel down the road. I'm sorry. It was so silly. So I took care of his problem. I did not tell him. No, you're wrong. When he was, yeah. When he was in seminary, he wasn't married to mom. Yeah. And that I wasn't born until four years after. Right, right. Yeah. And that we were in Vermont. The only time I ever tried to reorient any family member who was having a moment or whatever. Mm-hmm. My father thought he was out. In the rain and he said, Lil, can you please help me get in from the rain? And I said, dad, he couldn't feel his hands. Mm-hmm. And of course he was blind. Right. I said, dad, can you feel the, the board of the mattress, the firmness of the mattress underneath your arm? Mm-hmm. To which my father. Replied, Lily, Christina del Fiore. When I ask my daughter for help, I expect her help. Do not try to tell me that I'm not in the rain when I'm getting soaked. I immediately apologized. Mm-hmm. Said, daddy, I'll get your shoes shined up for work. Don't worry about it. I'll take care of everything. I'm so sorry I didn't listen to you. Mm. Please forgive me. Mm-hmm. And then I was well, right. I'm glad it happened, right, because. That was the only time my father raised his voice to me. Um, and he was, he was. Completely lucid 90 plus percent of the time. Right, right, right. Um, I always say if you are close or if somebody in your circle is close to your loved one mm-hmm. Um, let the staff know wherever they are, that you can be called at 2:00 AM if there's a problem. Um, my dad was so humble and so. Unselfish and never ever acted entitled. And there was one night when he was really upset and the nurses couldn't get him to talk. And so they're like, Hey Li, we asked your dad if he'd tell you what was wrong, and he agreed. I. I said, okay. Hey dad, what's going on? Yep. And he goes, oh lil, it's, I've got a really important meeting at work tomorrow at eight 30 and we're getting a nor'easter, and I don't know how I'm gonna get out of the driveway tomorrow. Because the plow guy said he can't get here early. And I said, daddy, look, I'm not working tomorrow. I'll be there in 20 minutes. Mm-hmm. You can use the snowblower, I'll use the shovel, we'll get. You know, they, because they had a long driveway. We'll get everything behind your car out of the way. I'll get up every couple of hours while you're sleeping. Yeah. And clear anything that's accumulated. You're, you're on your own with the street and the rest of the way to the hospital. But I'll take care of that. Yeah. Don't worry about it. Oh, you do that little, of course I would. Daddy. I'll see you soon. Yeah. I did not tell my father it was June. Yeah, exactly. I did Exactly. Did not tell him. Yeah. There were no nor'easters in the forecast. Yeah. I just solved his problem. Exactly. Yeah. Yeah. In a, in a way that could put his mind at ease right. In the moment. That's, yeah. Huge. You've got to figure out. Yep. You know, at one point my dad asked somebody for an extension cord and they're like, okay, Lee, we'll get it for you. He was fine. Yeah, he was fine. Yeah. Yeah, exactly. Yeah. But if anybody said, Lee, you don't need an extension cord. Yeah. Yeah. That would not have gone over well. No, exactly. And it's probably a lot of learning for a caregiver who this is new for. Yes. And it's just, you know what, we're gonna slip up. We're gonna make mistakes, but that's okay. And you get to be able to forgive yourself for the oopsies. And as long as you continue to keep that desire for connection and love alive, yes. You are doing your part. As best you can, whatever that needs to be. Right. Lill, right? Or Lily? Yeah, either way. Um, my aunt was in a very good facility in Chicago, um, but I didn't move her to Vermont for years because this was where she had lived since she was, and, but once the dementia got worse. Her friends stopped visiting her because they didn't wanna go to the nursing home and deal with that. Yeah. And my gut, she fell, they didn't send her to the ER until, even though I asked them to until eight hours later when they called me and said, you know, her hand is all swollen, her wrist is probably broken, you know? Mm-hmm. So I, she did need surgery. Hmm. And I was, my brother and I both flew, were there. Mm-hmm. And then he, I was, we were both supposed to fly out the next morning thinking she was in good shape, and my gut just said, no, don't go. Mm-hmm. So I didn't. And I showed up unannounced and found that her newly repaired wrist was down in her waist, which is of course not good. You need to prevent swelling. And she was soaked and she was frowning, and they were behind on her Tylenol pain meds. Oh. So I said Enough. Yep. And made arrangements and brought her, mm-hmm. To Vermont. And be creative. Yeah. And had them, my father had fallen three nights before and was not able to go home, but I got them to put my dad and my aunt in the same room. Mm-hmm. Because she still knew who my dad was. Nice. Yeah. And they could comfort each other. And then I only had to hire one extra caregiver. Yeah. To take care of both of them. Right. So my mom, and also to keep my poor mom from going nuts, having to go from her sister's room to her husband's room. Yes. Yes. Um, and my mom called me in a panic. Lil Esther said she's gotta go to work. What do I do? What do I do? And I said, mom, tell her she's on vacation. Yeah. So my mom went and told her that she comes back, Esther says she's gotta pick up her paycheck. I said, tell her that it's automatically deposited and she doesn't have to worry about it. Go enjoy your vacation. My mom comes back. She said she has to make sure the amount's right. I said, tell her I checked and it's to the penny what she said. Tell her to go have a good margarita. It takes us a while. Yeah. Before you can be okay with outright lying. Yeah. Yeah. But the question I always ask everybody is, by not lying, are you making your loved one feel better? Right. Are you improving the quality of their life? No. Mm-hmm. You're not. Right? And I had a client whose aunt loved to go on walks, had gone on walks for decades, but she was now bedridden and couldn't go. And she was, she was very, very clear on wanting her walks, but she had very little short-term memory. So I told my client to. Stop the agitation about when am I going on a walk? Swing her, have her sit on the edge of her bed. Mm-hmm. Swing her legs around, put on socks boots. A coat a hat. Mittens. Don't zip it up because you don't want her to overheat. Right. Then start talking about, oh, what do you think we're gonna see on the walk today? What do you wanna see on the walk today? Mm-hmm. Spend five or 10 minutes talking about the walk and what it's gonna feel like. Smell like. You know, all the different senses and then change the subject. Mm-hmm. For five minutes until whenever you know that they're completely, the walk is, yeah. Right. And then go, oh my goodness. That was such a great walk. Oh, you must be exhausted and so thirsty. Let me get your coat off and your shoes off. Oh. Let me get you a glass of water. Do you want ice in that? Are you warm from the wok? Mm-hmm. It made the woman so happy. Happy. Yeah. And she, you know, I had her ask, you know, what was your favorite part? And she, her brain could recall of course, some of those older things she had seen and loved. And so that broader joy. Right? Right. So it can be really handy when someone has a really short memory. Mm-hmm. Because if your dad's a Red Sox fan put on Yep. You know, when they won the pennant and beat the Yankees and, and got the World Series. Get it off YouTube. Put it on the loop. Yeah. Yeah. Your dad will just keep being happy all the time. Yeah. Um. I have a whole thing in my book, um, called Lily's Sensory Care Method, and I kind of figured this out with my dad and with Aunt Esther. Many people do not take the time to actually sit down and figure out what sounds your loved one can still hear. Yeah, what smells they can still smell, what taste they can still taste if they have floaters or curtains or different things. So. There's a whole list, um, an assessment that I give everybody. Mm-hmm. And then after you understand what you're working with mm-hmm. Then there are pages and pages and pages of questions to ask them. Right. And then when you're done, what you have is, you know, what is a waste of time and money. Right. Yeah. And, and you know what brings them joy. Nice. So you can, yeah. It's like our children, right? Mm-hmm. When they're five, if they love Spider-Man, you're gonna buy'em the Spider-Man sheets, towels, PJs, and toothbrush. Yeah. Yeah. Do the same with your loved one. Mm-hmm. Try to work with whichever senses they still have. So my dad was blind and he couldn't feel on his hand. But his hearing was fine. Right. And he was basically cognitively there. Mm-hmm. 90 plus percent of the time. So I did CDs books on tape'cause it was before Audible. Um, and he got to hear that he was a priest, he loved incense. You can't burn smelly candles or use plugins or do any of that stuff in nursing home. So I, I went ar I spent a lot of time researching on the web and I found that Barney's in New York had a spray of Right, real frankincense, most extravagant thing I've ever bought in my life. But I got it and then my dad could feel like he was in church. Yeah. And he, he had trouble swallowing. Um, he only weighed 128 pounds. He had lost so much weight because of mm-hmm. What was going on in his right esophagus. Right. So the hospice nurse said, go to the local grocery stores or bakeries and ask them to sell you the pie filling that's cream. Mm-hmm. That has no fruit in it so that they can't choke. Right. And that is a way to get different flavors. Right. I also went and got all the mini bottles. The mini bar bottles mm-hmm. Of his favorite liqueurs and stuff. Mm-hmm. So that every time I gave him liquid morphine in his mouth. And he didn't like the thing. Right. We had fun. Right. It was like, all right, daddy, you want jd? You want creme dement. Yeah. You know, make as much as you can. Make things fun. Mm-hmm. Make things fun. Yeah. Yeah. Love that. So information that you're talking about is in your book, am I correct? Yes. In terms of the checklists and all of those good things. All these things. Okay. Yep. Lily's caregiver's guide. It's on Amazon. Okay. When you next see it, um, I have a different publisher that's republishing it. Um, perfect. And there's the QR code in this one. Yeah. And at the back of the book, and everybody is welcome to share this QR code. Um, my book is full of worksheets and forms. Perfect. The best way to deal with all of this stuff is to be organized so you can scan that. Okay. And then it will take you to a page where you can download all the different forms for all the different chapters. Okay. Get a three ring binder. Yep. Look at the table of content, see which ones are applicable to you or will be, right. Right. So you have. You have too much to do. Mm-hmm. So get everything out on paper. Yeah. Get anybody and everybody who is helping with your loved one. Mm-hmm. To write down on the bed the linens. Changing sheet. Mm-hmm. The date and their initials that they changed. Right? The linen. Yeah. Have their right down when they wash their hair, trim their eyebrows, mustache, nose, hair, ears, hair. When they cleaned their CPAP when they check their PICC line. Right. All the things. And there's forms for skin checks and bed turning.'cause if your loved one is bedridden, you have to move them around in the bed and put pillows under them so that they don't develop Bedsores. Bedsores. Yeah. And so there's this skin check thing. Yeah. So that perfect. When the, when you go to the doctor and the doctor says, how long has this been going on? Yeah, exactly. You can open up your handy dandy folder and say, well. Yeah. And the other thing is I really recommend anytime there's anything with your loved one's body that is suspicious. Mm-hmm. Get a dime. Put it next to whatever it is, take a picture of it. Mm-hmm. And if it's red, right, grab your Sharpie, draw a line around it, put the dime back'cause you want with and without the sharpie. And note the time next to it. Right. And the date, when it starts to go out of that line, you need to send updated pictures to the doctor. Put them on their doctor's portal. In their patient page. Mm-hmm. Nobody can understand how infected something is if you do not, don't put that dime there. Yeah. And if you do not put the sharpie circle around it around. Yeah. Yeah. Blood poisoning can happen very quickly, fast older people. The other thing is that older women especially, but also older men, get UTIs, they can get them very frequently. If you notice any kind of mental status change with your loved one before you go. Concluding they have dementia, right? Get them. A, a cup, a pee cup. Bring them to the doctors, get them to pee in the toilet a little bit first, and then put the cup underneath so that any bacteria in their private area has been washed out. Yeah. And then bring it, um, okay. Really important. Yeah, for sure. And obviously there's blood in the urine. That's a sign of a a ut Of course. Of course. Yeah. Well, not everybody knows that, you know. Yeah, yeah, yeah. For sure, for sure. So much information, and I know we could go on and on, but, um, we'll never hit all of the possibilities in a conversation. No, and that's why you've created your book and it's the resources that sit within that, and there will be an up. Dated, um, yes. Version coming out. And so all of this information will definitely be in the show notes so that people can find the book, find you, um, because I know that you work with clients and help them through these. Upcoming possibilities that might be happening in their lives now or in the near future. Or they can reflect on what they have done in the past and knowing that there's always caregiving responsibilities that might come your way. Sometimes we understand and know they're coming and sometimes we get hit with surprises. Right? It's, I'm very different than most counselors or whatever. Mm-hmm. Because I charge by the hour and I will keep. A running total, you can text me mm-hmm. As often as you need to. Mm-hmm. And you can send me an email if it, it's a quick email and I don't have to write back a whole dissertation. Yep. Then I don't count that. If I develop a care plan for you Right. Or things like that, then I will charge you and I will charge you for phone calls. But other than that, you can call me and text me whenever you want. Okay. And. You know, I'm very, because people don't fall or get sick between the hours of eight and five. Yeah. Monday through, isn't that the truth? Yeah. And unless you dealt with this stuff, yeah. You have no idea of what the heck to do. Exactly. Yeah. Yeah. And, and you know, I really appreciate today's conversation and I, I really love the angle and the way you're approaching it. It's for, um, through the lens of love as a caregiver, it's not through the lens of, well, what are the actions we have to take? You've got the soft spot spot and the heart connection, which I think is why your book is so empowering because it comes. In that kind of a package. So thank you so much for everything you do. And there's one other thing I neglected to talk about. Self-care as a caregiver is paramount, and this also goes for anyone who's lost a loved one as for dealing, coping with grief and loss. If you are not sleeping at least four to five hours a night, if you are not eating. Mm. Or, and only can get down one meal a day. Mm-hmm. If you are not keeping up on your fluids. Mm-hmm. If you're having nightmares, if you are finding yourself crying. At Hallmark movies or gushy commercials, or if you find yourself snapping at everybody for no reason. Those are all signs of what my dad and I called leaking. Things are too much. That is, those are red flags. Okay? Go see your general doctor. Get something to sleep. Do not worry right now about getting addicted sleeping medicine as long as you can still get woken up if the phone rings and something's wrong. Yeah. That's all that matters. You've got to sleep. You cannot do everything that's expected of you or make good decisions for yourself or your loved one and family if you're not taking care of you. Mm-hmm. So if one of your friends says, Hey, what can I do? I know you're slammed, say. Bring over dinner, right? Yep. Have somebody start a meal train online. Mm-hmm. And, and say, you know, these are the, the restaurants we love to get to take out from. Yep. Get us a gift card. Yeah. If you wanna do something. Yep. And. And use the forms in my book for everything. There's not, it literally goes from how to interview caregivers. Mm-hmm. And how to look at the different physical symptoms and what you need to be aware of for basic knowledge all the way through the last chapters, all in grief. Right. And one of the things that drives me nuts is when people die, everybody says, oh, let me know what you need. Yeah. Well, nobody can think. No. So I have. A whole bunch of sheets that you can print out and hand to people when they say, let me know what you le need. Say, oh, here you go, pick one. Right. Yeah. And there's a place for them to write their name, their email, and their cell number. Yeah. So be you can look back because you're not gonna remember who said what was gonna, they were gonna do what? No. No way. No. So, yeah, love that. And, and my website has a ton of information. On it as well. And we all have that in the show notes too, so that's wonderful. Yeah. Thank you again for your experience, your expertise, your brilliance in this. Challenging but necessary area. And it doesn't have to be as challenging as we make it. And if we, again, approach it from the idea of I'm doing this for myself and my loved one, what does that need to get to look like in the end? Right? Yes. So thank you. Yeah. Oh, you're welcome. I thought of one other thing. Is that all right? Yep. So my father explained to me that many people who were keeping vigil in the hospital with their loved ones would be very upset because they would make sure that someone was with their loved 1 24 7, and then all of a sudden after a week or two. Someone had to pee and the other person was in the cafeteria. Yep. And at that moment, their loved one chose to leave. Yeah. And they would get upset and say, I can't believe we failed them. And what my father explained was that person did not wanna leave with family in the room. They, that was too upsetting for them. So they took the first opportunity. Yeah. So I absolutely believe and do this with everybody. If you wanna, if you, you know, Hey, I love you. If you want me to be here, I'm here. Mm-hmm. If you don't and you want, you've decided you don't wanna die with family or anybody else, that's fine. Yeah. Yeah. And so with Aunt Esther, I'd been up with her all night. And I, you know, she'd been unconscious for a few days. So I said, Esther, I'm driving home to Essex. I'm going to shower and change, and I'm coming back. If you want to leave and be alone, I've told the staff they're not allowed to come into your room for at least an hour. Mm-hmm. So you've got free reign. Mm-hmm. However, if you're still here, when I get back, I'm not leaving again. Right. So make up your mind. Mm-hmm. And she waited for me. You know, but I gave her the choice. Yeah. And even if they're unconscious, they can still hear you. Yeah. Yeah. Always believe that. Mm-hmm. Mm-hmm. For sure. All right. Sorry. That's okay. That's okay. No problem at all. And you know, it's such a good conversation. You never know. We might circle back and continue it another time. I love it. We just never know. Love. I'd love it. Lily, thank you so much again for being here today and sharing with us and giving us some new opportunities to come up with plans that, um, will be required. For whomever whenever in the future. So thank you again, and before You're very welcome. Yeah. Before we close, I do want to share something gently and cleanly that this November I am hosting a live in-person experience and we're calling it Ignite the Inner Uprising. It'll be a two day immersive gathering for 1200 women in midlife. Women who are feeling this quiet pull towards something more truthful, embodied, and more fully their own. It's Ignite is gonna be an extension of the conversations that we have here on Thrive After 45, and it's where reflection becomes embodiment and where insight becomes integration, where women who have held so much for others. Gather to stand fully in their own sovereignty. And it's something if something stirred in you today as we were having our incredible conversation, if your body leaned in, it's probably not accidentally. The wait list is open now. So if it seems like Ignite is in your future. Thank you. I invite you to add your name to our wait list and the link will be in the show notes. And as always, make sure you follow share, like review so more women can find these very important conversations. Have a wonderful day. Take care of yourselves and make sure you do something for you by you because of you, especially when you are in caregiver mode. Thank you again, Lily, for being here. So appreciate all of our. Conversation today. Oh, thank you so much for having me. It's been a pleasure.