Latest / Thrive After 45® | Life After 45, Self-Trust, Midlife Women / Caregiving for Your Parents without Losing Your Mind - with Lili Udell Fiore
Transcript
- 0:00Hello, and welcome to today's episode of Thrive After 45.
- 0:05I'm Denise Drinkwater, heart whisperer, midlife mirror and mentor.
- 0:10And every week I am so honored to share space and energy with inspiring guests whose stories reflect so many possibilities of thriving beyond 45.
- 0:21Together we'll uncover the whispers of the heart, the power of midlife transformation, and the wisdom that fuels expansion.
- 0:30What if the conversations that we avoid the most are the very ones that could bring the greatest peace to the people we love?
- 0:42It is such an honor.
- 0:44A privilege to welcome Lily del Fre to thrive after 45.
- 0:51Today.
- 0:51Lily is an Amazon bestselling author, speaker, caregiver, advocate, certified end of life doula, certified dementia practitioner, and master grief coach.
- 1:03And she is on a mission to change the way we approach dementia, caregiving, and end of life planning.
- 1:10Raised by a father who was an EPIs Episcopal priest and hospital chaplain.
- 1:17She grew up witnessing compassionate care in action.
- 1:21That understanding became deeply personal when she spent over 12 years caring for an aunt, father, and mother n navigating dementia.
- 1:32Family dynamics, medical advocacy and loss.
- 1:36Through that journey, Lily learned that with structure, honesty, and the right support, caregiving can shift from overwhelming to meaningful.
- 1:47She founded much love.
- 1:49Lily to provide practical guidance, resources, and tools that replace fear with clarity and confidence.
- 1:57Her message is simple and powerful.
- 1:59Planning ahead is not morbid.
- 2:02It's love.
- 2:04In midlife when so many women are caring for others.
- 2:08This conversation is absolutely essential.
- 2:12Lily, I am so grateful to have you here today with us.
- 2:16I know we are gonna unpack so much.
- 2:20So thank you for your time, energy, wisdom, and expertise.
- 2:24Well, thank you so much for inviting me.
- 2:26We talked about this last year.
- 2:28And 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.
- 2:39Yeah.
- 2:39So it doesn't matter when you hear this podcast.
- 2:43Yeah, it is.
- 2:44Relevant always.
- 2:46So isn't isn't that the truth?
- 2:48Right.
- 2:48We are always dealing with how to support others in caregiving roles and in particular us as midlife women.
- 2:59Yes.
- 3:00That sandwich generation, isn't it?
- 3:03It is indeed.
- 3:04It is indeed.
- 3:06So.
- 3:07There are, so I could talk for hours, um, obviously certifications in three areas.
- 3:14Yeah.
- 3:14Um, this is my passion.
- 3:17Mm-hmm.
- 3:17Um, but what I wanna hit on today are some of the bullets points mm-hmm.
- 3:22That I think are just tot amount to survival and to just creating the most sacred, holy, or.
- 3:36Spiritual if you don't believe in God.
- 3:38Yeah.
- 3:39Um, experience for you and your loved ones.
- 3:42Mm-hmm.
- 3:44So I think, um.
- 3:46You want me to just dive in or, yeah.
- 3:47Uh, I love diving in.
- 3:49That's what we do here.
- 3:51Okay.
- 3:51We don't go into the fluff.
- 3:52We go into the meat and potatoes.
- 3:54Yeah.
- 3:55Oh, good.
- 3:55Good, good.
- 3:56So one thing that I did not realize myself is that if your loved one has already express their wishes mm-hmm.
- 4:06That they want their life to end whenever it naturally happens, be it stroke, heart attack, whatever.
- 4:13Mm-hmm.
- 4:14If you call 9 1 1 because they're unconscious or they've fallen, okay, unless you have the end of life.
- 4:25Or 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.
- 4:38Mm-hmm.
- 4:38When you call 9 1 1, they're legally obligated to do everything in their power to revive your loved one.
- 4:46Um, unless you have that form mm-hmm.
- 4:49Previously signed by the doctor saying that they are do not resuscitate.
- 4:54This is so, so, so important.
- 4:58Uh, when an older person or someone who's has frail bones.
- 5:06Is given CPR.
- 5:07Mm-hmm.
- 5:08Their ribs often break.
- 5:10Yeah.
- 5:10They end up with a lot of bruising.
- 5:12This is not an easy thing to come back from.
- 5:16Right.
- 5:16This requires a lot of healing, so if your loved one has already accepted the fact that they're not gonna get better mm-hmm.
- 5:26So important to sit down with them and have the conversation, you know, Hey mom, do you really wanna be here?
- 5:34Do you really wanna extend this?
- 5:36Mm-hmm.
- 5:36Or do you wanna go be with your parents, be with your siblings, be with your spouse?
- 5:43And well, if you do, then let's go ahead and get this signed form.
- 5:49Put it here.
- 5:50Mm-hmm.
- 5:51And 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.
- 6:01Um, 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.
- 6:11Who would be the people that would pick you up?
- 6:13Sure.
- 6:14And just try to cover your old, all your bases.
- 6:18Mm-hmm.
- 6:19My number one priority with caregivers mm-hmm.
- 6:22And with families is to make you as bulletproof as possible so that later on you have absolutely no regrets.
- 6:35We all do, hopefully the best we can with what we know, but not knowing.
- 6:41And not being able to do, and then having the hindsight can be so painful.
- 6:48Yeah.
- 6:48And so hard because we don't know what we don't know.
- 6:52Right.
- 6:52And since, and I didn't know certain things and my dad taught death and dying at the UVM Med school, you know?
- 7:01Right.
- 7:02Yeah.
- 7:02Um, so one of the first things I always say is the moment.
- 7:09Your friend, loved one, spouse, child, parent, mm-hmm.
- 7:13Has been given a diagnosis mm-hmm.
- 7:17Where they're not gonna get better.
- 7:19Okay?
- 7:19Mm-hmm.
- 7:21If you know this to be fact, and if they are aware of it mm-hmm.
- 7:25Um.
- 7:27And 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.
- 7:36Mm-hmm.
- 7:37And you need to ask the doctor, sit down with your loved one.
- 7:40How do they wanna die?
- 7:42Do they wanna die in a hospital?
- 7:44Do they wanna die in a hospice?
- 7:46Do they wanna die at home?
- 7:48Of course, the caveat.
- 7:49That you cannot always predict when things are gonna happen.
- 7:53Sure.
- 7:54So if we have choices mm-hmm.
- 7:57What, what are your wishes?
- 7:59Um, 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?
- 8:09Mm-hmm.
- 8:09Or, or do you wanna die with your loved ones?
- 8:12Right.
- 8:12Great questions to ask.
- 8:15Right.
- 8:17So 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.
- 8:31Right.
- 8:31So I personally, because obviously I was raised Episcopalian.
- 8:37Mm-hmm.
- 8:37For me.
- 8:39My gut feeling is God talking to me, whatever it is for you, but your gut, right?
- 8:45They've proven it's like another brain.
- 8:47It has so many sensory things.
- 8:50Yeah.
- 8:50Right.
- 8:51So if your gut says, I'm not really sure how I feel about this doctor, sit down with them and say, how?
- 9:00How do you envision my loved one leaving this earth?
- 9:03Mm-hmm.
- 9:04Mm-hmm.
- 9:06It's so important to remember that.
- 9:09Yes, 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.
- 9:21Right.
- 9:21That's, that's just the way it is.
- 9:24Right.
- 9:24Many, many, many people are lousy dealing with death, and that includes doctors.
- 9:30Mm-hmm.
- 9:30So if they have not come to terms with death and mortality in their own lives mm-hmm.
- 9:36Then how the heck are they going to ever do it with your loved ones?
- 9:40Right?
- 9:41So if there's a disconnect mm-hmm.
- 9:45Absolutely.
- 9:47Call 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.
- 10:02Right.
- 10:02But that we can do a lot of things to make the quality of their life so much better.
- 10:09Yeah.
- 10:10So much better.
- 10:11Yeah.
- 10:11I often say do not use the word hospice.
- 10:15Mm-hmm.
- 10:15With older people especially.
- 10:17Mm-hmm.
- 10:17It, to them it's like the word cancer was when I was a kid.
- 10:23It was scared to death.
- 10:25Yeah.
- 10:25My dad brought hospice into Vermont, um, with a social worker back in the seventies.
- 10:32Hmm.
- 10:32Two weeks before my dad died and my mom for the first time saw the hospice people.
- 10:38Mm-hmm.
- 10:39She was like, why are these hospice people here?
- 10:41And I was like, um.
- 10:44Yeah, because dad's dying mom.
- 10:46Yeah.
- 10:46And it was too hard for her.
- 10:48Mm-hmm.
- 10:48And 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.
- 10:58Yeah.
- 10:58So it's the old adage of the cobbler's children having no shoes can be true of their spouses and other family members.
- 11:09So that's really important.
- 11:12Get.
- 11:13The other thing I want people to understand is I have seen a lot of families pull mm-hmm.
- 11:22Things that they really shouldn't pull.
- 11:25So the moment your loved one has been diagnosed with a cognitive issue mm-hmm.
- 11:32It needs to be.
- 11:38Dealt 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.
- 11:50Mm-hmm.
- 11:51Because I have heard of so many children who, when stepmom or stepdad is away mm-hmm.
- 11:59They will take their parent with dementia, bamboozling, and.
- 12:04An attorney into thinking that they're copacetic.
- 12:08Right.
- 12:08And, and maybe the, the attorney knows and maybe they don't.
- 12:12Mm-hmm.
- 12:12Depends on how alert they are and get a whole new set of.
- 12:17Documents.
- 12:18Yeah.
- 12:18And a will.
- 12:20Yeah.
- 12:20And so then people come back and find out that the kids step kids have emptied the bank accounts.
- 12:25Mm-hmm.
- 12:25Or the kids have emptied the bank accounts.
- 12:28Mm-hmm.
- 12:29Um, 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.
- 12:41One of my friends did that, her mom did that.
- 12:43Mm-hmm.
- 12:43And I thought that was brilliant.
- 12:45Mm-hmm.
- 12:46You know, so it, yeah.
- 12:47It kind of makes you bulletproof again.
- 12:50Right, right.
- 12:51Just 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?
- 13:07Yes.
- 13:08What do you do in the case?
- 13:10Or 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?
- 13:27Because it's the fear of all of it.
- 13:29I just, we don't talk.
- 13:30We just don't.
- 13:31Right.
- 13:31Nope.
- 13:32Just do whatever you're gonna do kind of thing.
- 13:35Yes.
- 13:35There are lots of people like that.
- 13:37Mm-hmm.
- 13:38Um, 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.
- 13:49Yep.
- 13:50I would, I highly re uh, have you ever heard of Don Miguel Ruiz and the Four Agreements?
- 13:56Oh, yes, yes, yes.
- 13:58The four agreements.
- 13:58Yep.
- 13:59They are sacrosanct in my perspective.
- 14:02Don't assume, do your best, use your words.
- 14:06Yep.
- 14:06Um, all these things, I think that should be, everybody's on everybody's kitchen go-to go-to, right.
- 14:14So, because it saves you so much time and energy.
- 14:17So in the spirit of that, I always direct people or my clients mm-hmm.
- 14:24To please.
- 14:26Get everybody's email who has a reason to know?
- 14:30Mm-hmm.
- 14:31Send them an email saying.
- 14:35I know I'm not, well first, if you're not the power of attorney, have the discussion with the person who is privately, right?
- 14:42Right.
- 14:42We never want to embarrass anybody or put anybody on the spot, um mm-hmm.
- 14:48Because maybe they understand that they are the power of attorney, but.
- 14:53They don't wanna cope with it, right?
- 14:55Mm-hmm.
- 14:55Yeah.
- 14:55So, and, and that's okay.
- 14:57So when my aunt needed power of attorney to be enforced mm-hmm.
- 15:03It was her husband first.
- 15:04Mm-hmm.
- 15:05He had died 10 years before.
- 15:06Right.
- 15:07Then it was my mom.
- 15:08Mm-hmm.
- 15:09My mom said, I have all I can do to take care of your father.
- 15:12So then it fell to me.
- 15:14Right.
- 15:14So I used to worry that if I got hit by a bus Yeah.
- 15:19Who's gonna be responsible for my beloved aunt that has Parkinson's and Parkinson's dementia.
- 15:25So if you only have one or two people on your documents, please go get another one or two added.
- 15:32Mm-hmm.
- 15:32And anyone removed that can no longer handle this role.
- 15:35Sure.
- 15:37Yeah.
- 15:37Um, that's really important, but mm-hmm.
- 15:40I, I regress so, so many angles to talk to, right?
- 15:45There'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.
- 15:57Um, so send a letter out to these people and say, this is what's going on.
- 16:05Mm-hmm.
- 16:05This is where I need help.
- 16:06Mm-hmm.
- 16:07If you can.
- 16:09Support, uh, with time with money.
- 16:14Mm-hmm.
- 16:15Mom's house needs to get cleaned.
- 16:17Mm-hmm.
- 16:17Or dad continues to pee all over the bathroom because his aim is gone.
- 16:21'cause his site is gone.
- 16:22'cause his coordination is gone.
- 16:23Sure.
- 16:24Um, yep.
- 16:25Mom doesn't wanna clean that up anymore.
- 16:27Mm-hmm.
- 16:28You know?
- 16:29These are the things.
- 16:31It'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.
- 16:43That's part of caregivers taking care of themselves and understanding boundaries.
- 16:48Right.
- 16:48Love that.
- 16:49Love that.
- 16:49Yeah.
- 16:50Thank you.
- 16:51And the other thing is to understand is that those family members that you expected to be there and help mm-hmm.
- 17:01Carry the weight of mm-hmm.
- 17:03The situation with your loved one.
- 17:06You do not know what's happened to them in their lives.
- 17:10Right.
- 17:10You do not know.
- 17:12Yeah.
- 17:13Never assume going back to the four agreements, right.
- 17:16You do not know if they were abused mentally, physically.
- 17:21Mm-hmm.
- 17:22Or even if that person didn't do it to them, maybe that per they thought, that person should have known.
- 17:29Mm-hmm.
- 17:29Yeah.
- 17:29And so they have an expressed anger.
- 17:31Yeah.
- 17:32So there are all these landmines and many people judge and hold grudges.
- 17:42Mm-hmm.
- 17:42And drop family members and friends because you didn't do your part Right.
- 17:48To care of whoever.
- 17:51Right.
- 17:51But it may not, I mean, if, if it is that they're jerks, well then fine.
- 17:55Let the universe deal with that.
- 17:57Mm-hmm.
- 17:57Meanwhile.
- 17:59By sending out that email and saying, these are, this is what I need.
- 18:04These are the problems.
- 18:06Mm-hmm.
- 18:06Mm-hmm.
- 18:07If you can help me now with mom or dad or whoever.
- 18:11Mm-hmm.
- 18:12Great.
- 18:12Mm-hmm.
- 18:13If not, if you don't wanna be on this email list anymore.
- 18:16Right.
- 18:17Please let me know.
- 18:18I just am trying to keep the lines of communication open.
- 18:23Yeah.
- 18:23And, and if you later on have more time or wanna help with something mm-hmm.
- 18:29That's great.
- 18:29Right.
- 18:29And make sure you say no judgment.
- 18:33Right.
- 18:33Of course.
- 18:34It really sucks if you're the one that's left holding the bag.
- 18:39Mm-hmm.
- 18:40And nobody else is willing to pick anything up.
- 18:42So yes, you absolutely have a right to that anger.
- 18:46Yeah, get a therapist and deal with it.
- 18:50Mm-hmm.
- 18:51But do not make your life harder, right?
- 18:55Because you are constructing all these stories around.
- 19:00And that again, goes back to the four agreements.
- 19:03Um, we have no idea.
- 19:07Right.
- 19:07What other people have been through, and especially as we get older.
- 19:12Mm-hmm.
- 19:12There 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.
- 19:28Mm-hmm.
- 19:28Or I'm going to a different city.
- 19:30Yeah.
- 19:30And now I've lost all my roots, my church, my whatever, my favorite hangouts.
- 19:38That's loss.
- 19:39Yeah.
- 19:39Yeah.
- 19:39That is really loss.
- 19:41And 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.
- 19:54Mm-hmm.
- 19:54All the different losses and the friends that, that die or.
- 19:59Your favorite movie star who you loved.
- 20:02Mm-hmm.
- 20:02You know, my daughter and I were heartbroken when Diane Keaton died.
- 20:06Yeah.
- 20:06We adore her.
- 20:07We watched her movies, our whole, you know, yeah.
- 20:10My daughter's whole life.
- 20:11Um, those things all add up.
- 20:14Yeah.
- 20:14Yeah.
- 20:15And.
- 20:16Sometimes 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.
- 20:27Yeah.
- 20:27The 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.
- 20:36Yeah.
- 20:36And it's not that they're bad, it's not that they're jerks.
- 20:40Yeah.
- 20:40It's, they're just in a different place than you are.
- 20:43Right.
- 20:44Forgive them.
- 20:44I saw a great bumper sticker the other day.
- 20:48It said, treat everybody with love.
- 20:52I'll sort it out later.
- 20:53God.
- 20:55And I just thought that was perfect.
- 20:57Yeah.
- 20:57You know, we don't know what we don't know.
- 21:00Mm-hmm.
- 21:01So the other thing I want people to understand is when somebody gets a diagnosis, that same circumstance applies.
- 21:11Mm-hmm.
- 21:12So when we were young and our mom was diagnosed with aplastic anemia, she had spent years doing all sorts of stuff for the town.
- 21:22Yeah.
- 21:22You know, involved in every.
- 21:24Thing at school, the Girl Scouts, whatever.
- 21:27Yeah.
- 21:27The moment people found out that she was given six months to live, even though she didn't die happily till much, many decades later.
- 21:36Mm-hmm.
- 21:36A lot of people stopped calling.
- 21:40Hmm.
- 21:41Some of it was purely selfish because they couldn't Sure.
- 21:45Mom could do anything for him anymore.
- 21:47Mm-hmm.
- 21:48And some people it's, it becomes threatening.
- 21:52Yeah.
- 21:52The priest's wife who does everything for everybody gets Yeah.
- 21:59A plastic anemia and she's that good.
- 22:03What's, yeah.
- 22:04I don't think I'm as good a person as her, so.
- 22:07Mm-hmm.
- 22:07Damn, what's gonna happen to me?
- 22:10And this is not necessarily conscious.
- 22:13No, of course.
- 22:14It's just, it's just part of the fabric of our lives.
- 22:19Yeah, 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.
- 22:33We're gonna, we got to do, this is what we do.
- 22:35We care for every, we make sure everybody else is okay and then we.
- 22:39Come to a brick wall that we hit and we don't even know what's going on.
- 22:44But when you go under those layers, so I love what you're saying about get support for yourself as required, right?
- 22:50Yes.
- 22:51And 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.
- 23:04Yeah.
- 23:05And do not wish and hope that's wasted energy.
- 23:09Hmm.
- 23:09People are where they are.
- 23:12You sending a rage, guilt filled email is not going to move them on.
- 23:18Right.
- 23:19The meter, of course, it just isn't.
- 23:21Mm-hmm.
- 23:22So.
- 23:23If you wanna alienate these people, then go right ahead there, but Yeah.
- 23:29But 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.
- 23:42Right.
- 23:42Right, right.
- 23:43That's, um, so that's really, really, really important.
- 23:48Mm-hmm.
- 23:49Um, to just level set everybody.
- 23:52Yep.
- 23:53Don'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?
- 24:01Assume, yeah.
- 24:02Once you get that letter out, you know what you're dealing with.
- 24:06Yeah.
- 24:06And you have.
- 24:07And you don't have to waste any more time and energy.
- 24:10Yeah.
- 24:11Yeah.
- 24:11You know?
- 24:11Yeah.
- 24:12Yeah.
- 24:12If you need resources, call up the high school.
- 24:16Call up.
- 24:17You know what kid is looking to make money by raking up yards.
- 24:20Mm-hmm.
- 24:21Or yeah, mowing the lawn or, yeah.
- 24:24Has a license and can't wait to use it.
- 24:26Right?
- 24:27Yeah.
- 24:27And you pick up food for your parents, right?
- 24:30Yeah.
- 24:30Perfect.
- 24:30Things like that.
- 24:31Yeah.
- 24:31What 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.
- 24:43Right.
- 24:43Yeah.
- 24:44Yeah.
- 24:44Really important.
- 24:46Absolutely.
- 24:47Absolutely.
- 24:48Yeah.
- 24:49Are there some key things you've mentioned about bulletproofing yourself with caregiving?
- 24:57Are there three.
- 24:59Key things.
- 25:00You've mentioned some I know, and I know there's so many, but are there, there are three.
- 25:04Are 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.
- 25:18Yeah.
- 25:19Having to go over what we've already talked about.
- 25:21Yeah.
- 25:21Having the DNR if your loved one does not want to live anymore.
- 25:27Yep.
- 25:27When that naturally occurs, have that piece of paper signed by the doctor so that you can call 9 1 1 and have them.
- 25:35You know, make your level more, honor that.
- 25:37Yeah, honor that.
- 25:38And 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.
- 25:49Right.
- 25:49I had a dear friend whose parent was stage four with cancer, was in the hospital.
- 25:56Mm-hmm.
- 25:57And.
- 25:58Nobody ever sat down with the family to say that their parent was actually dying.
- 26:03So when my friend started hearing the, what's often called the death rattle from her parent, yeah.
- 26:11Yes.
- 26:11She ran outside and told the nurse, well her parent was still a full code.
- 26:18So yeah.
- 26:19Instead of that parent having a peaceful.
- 26:23Ending.
- 26:24Yeah.
- 26:25They were pounded on, on their chest.
- 26:28Their family wasn't allowed to be with them.
- 26:30That's not a way to die.
- 26:32No.
- 26:32Yeah.
- 26:32It just isn't.
- 26:34Yeah.
- 26:34So, and I've, and if your loved one, one of the things that is so important is with cognitive decline.
- 26:45Mm-hmm.
- 26:46If your loved one is chosen.
- 26:48S and you know this to be a fact.
- 26:51Yeah.
- 26:51To not be intubated.
- 26:53Yeah.
- 26:53Okay.
- 26:54Not be put on a, a, a respirator mm-hmm.
- 26:57If they're not able to exist without it.
- 27:01Right.
- 27:01Under their current condition, like being septic or kidney failure or pneumonia, whatever it is.
- 27:10Mm-hmm.
- 27:11Do not allow them to be intubated.
- 27:16I 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.
- 27:31Mm-hmm.
- 27:31And many doctors who were not oriented in that mm-hmm.
- 27:36Who are just general medical doctors, are not okay with pulling plugs and.
- 27:45Once you start the process of putting someone on a respirator, their kidneys will begin to fail.
- 27:52Their body will start to retain fluid.
- 27:55Mm-hmm.
- 27:55They will look like the pil.
- 27:56Very dope.
- 27:57Right.
- 27:58And if they start to have kidney issues, then they can't.
- 28:03Have morphine because morphine can cause seizures.
- 28:07So then they have other painkillers.
- 28:10Right.
- 28:10Which, in my opinion, from what I have personally seen, I'm not a doctor, not a, are not as effective as morphine.
- 28:18Right.
- 28:18Now, if you're allergic to morphine or you can't take it, then that's the way it is.
- 28:22Right, right, right.
- 28:23Yeah.
- 28:24But don't.
- 28:28The, 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.
- 28:39And it can be such a loving, calm, peaceful thing.
- 28:44Um, I, I find that really important.
- 28:48The other, if your loved one.
- 28:52Has, has any kind of cognitive issues or has a bad diagnosis, get the guns out of their house please.
- 29:02Mm-hmm.
- 29:03Get the bullets out.
- 29:04Get the guns out.
- 29:05Mm-hmm.
- 29:06I don't care if you have the cop, uh, you can call your local police station and they'll just take them for you.
- 29:12Mm-hmm.
- 29:13And maybe they'll sell them for you and, or maybe they won't.
- 29:16That's very random.
- 29:17Right.
- 29:18Right.
- 29:18You want the firearms out of the house.
- 29:21Mm-hmm.
- 29:22Especially if your loved one has cognitive issues.
- 29:25Mm-hmm.
- 29:25Because some of the different dementia diagnoses that people can become violent, it is not their fault.
- 29:33Right.
- 29:34Just that part of their brain no longer works.
- 29:37Mm-hmm.
- 29:39Um, with dementia.
- 29:44Do not ever, unless some doctor who really knows their stuff and your gut says it's good, never reorient them ever.
- 29:55Mm-hmm.
- 29:55Take them where they are, be with them where they are.
- 30:00Mm-hmm.
- 30:01I was taught very early with Ann Ester when she had mm-hmm.
- 30:05Parkinson's dementia by some of the nurses that they don't remember what you said, but they remember how you made them feel.
- 30:13Yeah, that makes sense.
- 30:14It makes a lot of sense.
- 30:16Yeah.
- 30:16Um, so, you know, they'll ask you crazy things sometimes.
- 30:23Yeah, yeah.
- 30:24Um, the thing to remember, is anybody gonna see this zoom?
- 30:29Yep.
- 30:29Yep.
- 30:29It's gonna be on YouTube.
- 30:31So there is a visual piece to it.
- 30:33Yeah.
- 30:33Okay.
- 30:34So imagine this is our brain.
- 30:39Okay?
- 30:40Yeah.
- 30:40We have.
- 30:41Birth kindergarten.
- 30:42Yep.
- 30:43Elementary school, you know, college tech, school, marriage, whatever, and then eventually death.
- 30:50Yep.
- 30:50All these things are linear for us.
- 30:52Right.
- 30:53Someone who has dementia, everything's touching everything.
- 30:58Wow.
- 30:59Okay.
- 30:59Yep.
- 31:00And that is why.
- 31:02Mm-hmm.
- 31:03They will be.
- 31:05Out of sorts sometimes.
- 31:07Right, right.
- 31:08So we had my dad under full care.
- 31:12Mm-hmm.
- 31:12On the full, he was bedridden, um, side of the nursing home.
- 31:18And our mom was on the assisted living side.
- 31:21And I bopped in to see my dad one, one time, and my father was blind from glaucoma damage for the last.
- 31:29Couple decades of his life.
- 31:31Mm-hmm.
- 31:32And I said, Hey Daddy, I'm going to go visit mom, but I'll on the other side, but I'll be right back.
- 31:36All 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.
- 31:45Your mom can't be here.
- 31:48And I just said, oh daddy, I'm so sorry.
- 31:50I misspoke.
- 31:51I meant the hotel down the road.
- 31:53I'm sorry.
- 31:54It was so silly.
- 31:55So I took care of his problem.
- 31:57I did not tell him.
- 31:59No, you're wrong.
- 32:00When he was, yeah.
- 32:01When he was in seminary, he wasn't married to mom.
- 32:04Yeah.
- 32:04And that I wasn't born until four years after.
- 32:07Right, right.
- 32:08Yeah.
- 32:08And that we were in Vermont.
- 32:10The only time I ever tried to reorient any family member who was having a moment or whatever.
- 32:18Mm-hmm.
- 32:19My father thought he was out.
- 32:21In the rain and he said, Lil, can you please help me get in from the rain?
- 32:26And I said, dad, he couldn't feel his hands.
- 32:29Mm-hmm.
- 32:29And of course he was blind.
- 32:30Right.
- 32:30I said, dad, can you feel the, the board of the mattress, the firmness of the mattress underneath your arm?
- 32:39Mm-hmm.
- 32:39To which my father.
- 32:40Replied, Lily, Christina del Fiore.
- 32:44When I ask my daughter for help, I expect her help.
- 32:49Do not try to tell me that I'm not in the rain when I'm getting soaked.
- 32:54I immediately apologized.
- 32:56Mm-hmm.
- 32:56Said, daddy, I'll get your shoes shined up for work.
- 32:59Don't worry about it.
- 33:00I'll take care of everything.
- 33:01I'm so sorry I didn't listen to you.
- 33:04Mm.
- 33:04Please forgive me.
- 33:05Mm-hmm.
- 33:06And then I was well, right.
- 33:07I'm glad it happened, right, because.
- 33:10That was the only time my father raised his voice to me.
- 33:14Um, and he was, he was.
- 33:18Completely lucid 90 plus percent of the time.
- 33:21Right, right, right.
- 33:23Um, I always say if you are close or if somebody in your circle is close to your loved one mm-hmm.
- 33:32Um, let the staff know wherever they are, that you can be called at 2:00 AM if there's a problem.
- 33:38Um, my dad was so humble and so.
- 33:44Unselfish and never ever acted entitled.
- 33:48And there was one night when he was really upset and the nurses couldn't get him to talk.
- 33:53And so they're like, Hey Li, we asked your dad if he'd tell you what was wrong, and he agreed.
- 33:57I.
- 33:58I said, okay.
- 33:59Hey dad, what's going on?
- 34:01Yep.
- 34:02And 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.
- 34:13Because the plow guy said he can't get here early.
- 34:16And I said, daddy, look, I'm not working tomorrow.
- 34:20I'll be there in 20 minutes.
- 34:22Mm-hmm.
- 34:22You can use the snowblower, I'll use the shovel, we'll get.
- 34:27You know, they, because they had a long driveway.
- 34:29We'll get everything behind your car out of the way.
- 34:33I'll get up every couple of hours while you're sleeping.
- 34:37Yeah.
- 34:37And clear anything that's accumulated.
- 34:40You're, you're on your own with the street and the rest of the way to the hospital.
- 34:44But I'll take care of that.
- 34:46Yeah.
- 34:46Don't worry about it.
- 34:47Oh, you do that little, of course I would.
- 34:49Daddy.
- 34:50I'll see you soon.
- 34:51Yeah.
- 34:52I did not tell my father it was June.
- 34:55Yeah, exactly.
- 34:55I did Exactly.
- 34:56Did not tell him.
- 34:57Yeah.
- 34:57There were no nor'easters in the forecast.
- 34:59Yeah.
- 35:00I just solved his problem.
- 35:02Exactly.
- 35:03Yeah.
- 35:04Yeah.
- 35:04In a, in a way that could put his mind at ease right.
- 35:09In the moment.
- 35:09That's, yeah.
- 35:10Huge.
- 35:11You've got to figure out.
- 35:12Yep.
- 35:13You know, at one point my dad asked somebody for an extension cord and they're like, okay, Lee, we'll get it for you.
- 35:20He was fine.
- 35:20Yeah, he was fine.
- 35:23Yeah.
- 35:23Yeah, exactly.
- 35:24Yeah.
- 35:25But if anybody said, Lee, you don't need an extension cord.
- 35:28Yeah.
- 35:28Yeah.
- 35:29That would not have gone over well.
- 35:30No, exactly.
- 35:32And it's probably a lot of learning for a caregiver who this is new for.
- 35:38Yes.
- 35:39And it's just, you know what, we're gonna slip up.
- 35:41We're gonna make mistakes, but that's okay.
- 35:43And you get to be able to forgive yourself for the oopsies.
- 35:47And as long as you continue to keep that desire for connection and love alive, yes.
- 35:56You are doing your part.
- 35:58As best you can, whatever that needs to be.
- 36:01Right.
- 36:01Lill, right?
- 36:02Or Lily?
- 36:02Yeah, either way.
- 36:04Um, 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.
- 36:22Her friends stopped visiting her because they didn't wanna go to the nursing home and deal with that.
- 36:27Yeah.
- 36:28And 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?
- 36:44Mm-hmm.
- 36:44So I, she did need surgery.
- 36:48Hmm.
- 36:49And I was, my brother and I both flew, were there.
- 36:53Mm-hmm.
- 36:53And 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.
- 37:03Mm-hmm.
- 37:04So I didn't.
- 37:04And I showed up unannounced and found that her newly repaired wrist was down in her waist, which is of course not good.
- 37:12You need to prevent swelling.
- 37:14And she was soaked and she was frowning, and they were behind on her Tylenol pain meds.
- 37:21Oh.
- 37:21So I said Enough.
- 37:23Yep.
- 37:24And made arrangements and brought her, mm-hmm.
- 37:27To Vermont.
- 37:28And be creative.
- 37:30Yeah.
- 37:31And 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.
- 37:41Mm-hmm.
- 37:42Because she still knew who my dad was.
- 37:45Nice.
- 37:45Yeah.
- 37:46And they could comfort each other.
- 37:48And then I only had to hire one extra caregiver.
- 37:51Yeah.
- 37:52To take care of both of them.
- 37:53Right.
- 37:53So 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.
- 38:01Yes.
- 38:02Yes.
- 38:02Um, and my mom called me in a panic.
- 38:05Lil Esther said she's gotta go to work.
- 38:07What do I do?
- 38:08What do I do?
- 38:09And I said, mom, tell her she's on vacation.
- 38:12Yeah.
- 38:13So my mom went and told her that she comes back, Esther says she's gotta pick up her paycheck.
- 38:18I said, tell her that it's automatically deposited and she doesn't have to worry about it.
- 38:23Go enjoy your vacation.
- 38:25My mom comes back.
- 38:26She said she has to make sure the amount's right.
- 38:29I said, tell her I checked and it's to the penny what she said.
- 38:35Tell her to go have a good margarita.
- 38:38It takes us a while.
- 38:40Yeah.
- 38:41Before you can be okay with outright lying.
- 38:45Yeah.
- 38:46Yeah.
- 38:46But the question I always ask everybody is, by not lying, are you making your loved one feel better?
- 38:54Right.
- 38:56Are you improving the quality of their life?
- 38:59No.
- 39:00Mm-hmm.
- 39:00You're not.
- 39:01Right?
- 39:02And 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.
- 39:11And she was, she was very, very clear on wanting her walks, but she had very little short-term memory.
- 39:19So I told my client to.
- 39:23Stop the agitation about when am I going on a walk?
- 39:26Swing her, have her sit on the edge of her bed.
- 39:30Mm-hmm.
- 39:30Swing her legs around, put on socks boots.
- 39:33A coat a hat.
- 39:35Mittens.
- 39:35Don't zip it up because you don't want her to overheat.
- 39:38Right.
- 39:38Then start talking about, oh, what do you think we're gonna see on the walk today?
- 39:43What do you wanna see on the walk today?
- 39:46Mm-hmm.
- 39:46Spend five or 10 minutes talking about the walk and what it's gonna feel like.
- 39:50Smell like.
- 39:52You know, all the different senses and then change the subject.
- 39:57Mm-hmm.
- 39:58For five minutes until whenever you know that they're completely, the walk is, yeah.
- 40:03Right.
- 40:03And then go, oh my goodness.
- 40:06That was such a great walk.
- 40:08Oh, you must be exhausted and so thirsty.
- 40:11Let me get your coat off and your shoes off.
- 40:13Oh.
- 40:14Let me get you a glass of water.
- 40:16Do you want ice in that?
- 40:17Are you warm from the wok?
- 40:19Mm-hmm.
- 40:20It made the woman so happy.
- 40:22Happy.
- 40:23Yeah.
- 40:23And she, you know, I had her ask, you know, what was your favorite part?
- 40:27And she, her brain could recall of course, some of those older things she had seen and loved.
- 40:34And so that broader joy.
- 40:36Right?
- 40:36Right.
- 40:37So it can be really handy when someone has a really short memory.
- 40:43Mm-hmm.
- 40:43Because if your dad's a Red Sox fan put on Yep.
- 40:49You know, when they won the pennant and beat the Yankees and, and got the World Series.
- 40:54Get it off YouTube.
- 40:55Put it on the loop.
- 40:56Yeah.
- 40:56Yeah.
- 40:57Your dad will just keep being happy all the time.
- 41:00Yeah.
- 41:00Um.
- 41:01I 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.
- 41:10Many people do not take the time to actually sit down and figure out what sounds your loved one can still hear.
- 41:19Yeah, what smells they can still smell, what taste they can still taste if they have floaters or curtains or different things.
- 41:29So.
- 41:31There's a whole list, um, an assessment that I give everybody.
- 41:35Mm-hmm.
- 41:36And then after you understand what you're working with mm-hmm.
- 41:40Then there are pages and pages and pages of questions to ask them.
- 41:45Right.
- 41:45And then when you're done, what you have is, you know, what is a waste of time and money.
- 41:51Right.
- 41:52Yeah.
- 41:52And, and you know what brings them joy.
- 41:55Nice.
- 41:56So you can, yeah.
- 41:58It's like our children, right?
- 42:00Mm-hmm.
- 42:00When they're five, if they love Spider-Man, you're gonna buy'em the Spider-Man sheets, towels, PJs, and toothbrush.
- 42:08Yeah.
- 42:08Yeah.
- 42:09Do the same with your loved one.
- 42:11Mm-hmm.
- 42:12Try to work with whichever senses they still have.
- 42:17So my dad was blind and he couldn't feel on his hand.
- 42:22But his hearing was fine.
- 42:24Right.
- 42:24And he was basically cognitively there.
- 42:26Mm-hmm.
- 42:2790 plus percent of the time.
- 42:29So I did CDs books on tape'cause it was before Audible.
- 42:34Um, and he got to hear that he was a priest, he loved incense.
- 42:40You can't burn smelly candles or use plugins or do any of that stuff in nursing home.
- 42:47So 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.
- 43:02But I got it and then my dad could feel like he was in church.
- 43:07Yeah.
- 43:07And he, he had trouble swallowing.
- 43:11Um, he only weighed 128 pounds.
- 43:13He had lost so much weight because of mm-hmm.
- 43:15What was going on in his right esophagus.
- 43:18Right.
- 43:19So the hospice nurse said, go to the local grocery stores or bakeries and ask them to sell you the pie filling that's cream.
- 43:30Mm-hmm.
- 43:30That has no fruit in it so that they can't choke.
- 43:34Right.
- 43:34And that is a way to get different flavors.
- 43:38Right.
- 43:38I also went and got all the mini bottles.
- 43:40The mini bar bottles mm-hmm.
- 43:42Of his favorite liqueurs and stuff.
- 43:44Mm-hmm.
- 43:45So that every time I gave him liquid morphine in his mouth.
- 43:48And he didn't like the thing.
- 43:50Right.
- 43:50We had fun.
- 43:51Right.
- 43:51It was like, all right, daddy, you want jd?
- 43:53You want creme dement.
- 43:54Yeah.
- 43:55You know, make as much as you can.
- 43:58Make things fun.
- 43:59Mm-hmm.
- 44:00Make things fun.
- 44:01Yeah.
- 44:02Yeah.
- 44:03Love that.
- 44:04So information that you're talking about is in your book, am I correct?
- 44:09Yes.
- 44:09In terms of the checklists and all of those good things.
- 44:11All these things.
- 44:12Okay.
- 44:13Yep.
- 44:13Lily's caregiver's guide.
- 44:14It's on Amazon.
- 44:16Okay.
- 44:16When you next see it, um, I have a different publisher that's republishing it.
- 44:21Um, perfect.
- 44:22And there's the QR code in this one.
- 44:25Yeah.
- 44:25And at the back of the book, and everybody is welcome to share this QR code.
- 44:32Um, my book is full of worksheets and forms.
- 44:36Perfect.
- 44:36The best way to deal with all of this stuff is to be organized so you can scan that.
- 44:43Okay.
- 44:44And then it will take you to a page where you can download all the different forms for all the different chapters.
- 44:51Okay.
- 44:51Get a three ring binder.
- 44:53Yep.
- 44:53Look at the table of content, see which ones are applicable to you or will be, right.
- 44:58Right.
- 44:58So you have.
- 45:01You have too much to do.
- 45:02Mm-hmm.
- 45:03So get everything out on paper.
- 45:06Yeah.
- 45:06Get anybody and everybody who is helping with your loved one.
- 45:11Mm-hmm.
- 45:11To write down on the bed the linens.
- 45:15Changing sheet.
- 45:16Mm-hmm.
- 45:16The date and their initials that they changed.
- 45:18Right?
- 45:19The linen.
- 45:19Yeah.
- 45:20Have their right down when they wash their hair, trim their eyebrows, mustache, nose, hair, ears, hair.
- 45:26When they cleaned their CPAP when they check their PICC line.
- 45:29Right.
- 45:30All the things.
- 45:32And there's forms for skin checks and bed turning.
- 45:36'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.
- 45:46Bedsores.
- 45:47Yeah.
- 45:47And so there's this skin check thing.
- 45:50Yeah.
- 45:50So that perfect.
- 45:51When the, when you go to the doctor and the doctor says, how long has this been going on?
- 45:57Yeah, exactly.
- 45:57You can open up your handy dandy folder and say, well.
- 46:00Yeah.
- 46:01And the other thing is I really recommend anytime there's anything with your loved one's body that is suspicious.
- 46:09Mm-hmm.
- 46:09Get a dime.
- 46:11Put it next to whatever it is, take a picture of it.
- 46:15Mm-hmm.
- 46:16And 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.
- 46:25And note the time next to it.
- 46:27Right.
- 46:28And the date, when it starts to go out of that line, you need to send updated pictures to the doctor.
- 46:35Put them on their doctor's portal.
- 46:38In their patient page.
- 46:40Mm-hmm.
- 46:41Nobody can understand how infected something is if you do not, don't put that dime there.
- 46:48Yeah.
- 46:48And if you do not put the sharpie circle around it around.
- 46:52Yeah.
- 46:52Yeah.
- 46:53Blood poisoning can happen very quickly, fast older people.
- 46:58The other thing is that older women especially, but also older men, get UTIs, they can get them very frequently.
- 47:07If you notice any kind of mental status change with your loved one before you go.
- 47:14Concluding they have dementia, right?
- 47:16Get them.
- 47:18A, a cup, a pee cup.
- 47:20Bring 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.
- 47:32Yeah.
- 47:32And then bring it, um, okay.
- 47:35Really important.
- 47:36Yeah, for sure.
- 47:37And obviously there's blood in the urine.
- 47:38That's a sign of a a ut Of course.
- 47:41Of course.
- 47:41Yeah.
- 47:41Well, not everybody knows that, you know.
- 47:43Yeah, yeah, yeah.
- 47:45For sure, for sure.
- 47:47So much information, and I know we could go on and on, but, um, we'll never hit all of the possibilities in a conversation.
- 47:55No, and that's why you've created your book and it's the resources that sit within that, and there will be an up.
- 48:02Dated, um, yes.
- 48:03Version coming out.
- 48:05And 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.
- 48:17Upcoming possibilities that might be happening in their lives now or in the near future.
- 48:22Or they can reflect on what they have done in the past and knowing that there's always caregiving responsibilities that might come your way.
- 48:30Sometimes we understand and know they're coming and sometimes we get hit with surprises.
- 48:37Right?
- 48:37It's, I'm very different than most counselors or whatever.
- 48:42Mm-hmm.
- 48:42Because I charge by the hour and I will keep.
- 48:46A running total, you can text me mm-hmm.
- 48:49As often as you need to.
- 48:51Mm-hmm.
- 48:51And you can send me an email if it, it's a quick email and I don't have to write back a whole dissertation.
- 48:57Yep.
- 48:58Then I don't count that.
- 48:59If I develop a care plan for you Right.
- 49:02Or things like that, then I will charge you and I will charge you for phone calls.
- 49:08But other than that, you can call me and text me whenever you want.
- 49:12Okay.
- 49:13And.
- 49:14You know, I'm very, because people don't fall or get sick between the hours of eight and five.
- 49:19Yeah.
- 49:20Monday through, isn't that the truth?
- 49:24Yeah.
- 49:24And unless you dealt with this stuff, yeah.
- 49:27You have no idea of what the heck to do.
- 49:30Exactly.
- 49:31Yeah.
- 49:32Yeah.
- 49:32And, and you know, I really appreciate today's conversation and I, I really love the angle and the way you're approaching it.
- 49:40It'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?
- 49:49You've got the soft spot spot and the heart connection, which I think is why your book is so empowering because it comes.
- 49:59In that kind of a package.
- 50:00So thank you so much for everything you do.
- 50:04And there's one other thing I neglected to talk about.
- 50:08Self-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.
- 50:20If you are not sleeping at least four to five hours a night, if you are not eating.
- 50:26Mm.
- 50:26Or, and only can get down one meal a day.
- 50:30Mm-hmm.
- 50:30If you are not keeping up on your fluids.
- 50:33Mm-hmm.
- 50:33If you're having nightmares, if you are finding yourself crying.
- 50:38At Hallmark movies or gushy commercials, or if you find yourself snapping at everybody for no reason.
- 50:46Those are all signs of what my dad and I called leaking.
- 50:50Things are too much.
- 50:51That is, those are red flags.
- 50:54Okay?
- 50:54Go see your general doctor.
- 50:56Get something to sleep.
- 50:58Do 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.
- 51:07Yeah.
- 51:08That's all that matters.
- 51:09You've got to sleep.
- 51:11You 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.
- 51:20Mm-hmm.
- 51:21So if one of your friends says, Hey, what can I do?
- 51:25I know you're slammed, say.
- 51:28Bring over dinner, right?
- 51:30Yep.
- 51:30Have somebody start a meal train online.
- 51:33Mm-hmm.
- 51:34And, and say, you know, these are the, the restaurants we love to get to take out from.
- 51:38Yep.
- 51:38Get us a gift card.
- 51:40Yeah.
- 51:40If you wanna do something.
- 51:41Yep.
- 51:41And.
- 51:43And use the forms in my book for everything.
- 51:47There's not, it literally goes from how to interview caregivers.
- 51:51Mm-hmm.
- 51:51And 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.
- 52:00Right.
- 52:00And one of the things that drives me nuts is when people die, everybody says, oh, let me know what you need.
- 52:08Yeah.
- 52:08Well, nobody can think.
- 52:10No.
- 52:10So I have.
- 52:11A whole bunch of sheets that you can print out and hand to people when they say, let me know what you le need.
- 52:19Say, oh, here you go, pick one.
- 52:20Right.
- 52:21Yeah.
- 52:21And there's a place for them to write their name, their email, and their cell number.
- 52:25Yeah.
- 52:26So be you can look back because you're not gonna remember who said what was gonna, they were gonna do what?
- 52:32No.
- 52:32No way.
- 52:33No.
- 52:34So, yeah, love that.
- 52:36And, and my website has a ton of information.
- 52:40On it as well.
- 52:41And we all have that in the show notes too, so that's wonderful.
- 52:44Yeah.
- 52:45Thank you again for your experience, your expertise, your brilliance in this.
- 52:51Challenging but necessary area.
- 52:54And it doesn't have to be as challenging as we make it.
- 52:57And 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?
- 53:08Right?
- 53:08Yes.
- 53:08So thank you.
- 53:10Yeah.
- 53:10Oh, you're welcome.
- 53:11I thought of one other thing.
- 53:13Is that all right?
- 53:13Yep.
- 53:15So 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.
- 53:32Someone had to pee and the other person was in the cafeteria.
- 53:36Yep.
- 53:36And at that moment, their loved one chose to leave.
- 53:40Yeah.
- 53:40And they would get upset and say, I can't believe we failed them.
- 53:43And what my father explained was that person did not wanna leave with family in the room.
- 53:50They, that was too upsetting for them.
- 53:53So they took the first opportunity.
- 53:55Yeah.
- 53:55So I absolutely believe and do this with everybody.
- 54:01If you wanna, if you, you know, Hey, I love you.
- 54:04If you want me to be here, I'm here.
- 54:07Mm-hmm.
- 54:08If you don't and you want, you've decided you don't wanna die with family or anybody else, that's fine.
- 54:15Yeah.
- 54:15Yeah.
- 54:16And so with Aunt Esther, I'd been up with her all night.
- 54:20And I, you know, she'd been unconscious for a few days.
- 54:24So I said, Esther, I'm driving home to Essex.
- 54:27I'm going to shower and change, and I'm coming back.
- 54:30If 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.
- 54:37Mm-hmm.
- 54:37So you've got free reign.
- 54:38Mm-hmm.
- 54:39However, if you're still here, when I get back, I'm not leaving again.
- 54:43Right.
- 54:43So make up your mind.
- 54:45Mm-hmm.
- 54:46And she waited for me.
- 54:49You know, but I gave her the choice.
- 54:51Yeah.
- 54:51And even if they're unconscious, they can still hear you.
- 54:55Yeah.
- 54:56Yeah.
- 54:56Always believe that.
- 54:58Mm-hmm.
- 54:59Mm-hmm.
- 54:59For sure.
- 55:00All right.
- 55:01Sorry.
- 55:01That's okay.
- 55:03That's okay.
- 55:05No problem at all.
- 55:06And you know, it's such a good conversation.
- 55:09You never know.
- 55:09We might circle back and continue it another time.
- 55:12I love it.
- 55:13We just never know.
- 55:13Love.
- 55:15I'd love it.
- 55:17Lily, 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.
- 55:30For whomever whenever in the future.
- 55:32So thank you again, and before You're very welcome.
- 55:35Yeah.
- 55:36Before 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.
- 55:49It'll be a two day immersive gathering for 1200 women in midlife.
- 55:55Women who are feeling this quiet pull towards something more truthful, embodied, and more fully their own.
- 56:02It'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.
- 56:18Gather to stand fully in their own sovereignty.
- 56:21And 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.
- 56:33The wait list is open now.
- 56:34So if it seems like Ignite is in your future.
- 56:39Thank you.
- 56:40I invite you to add your name to our wait list and the link will be in the show notes.
- 56:45And as always, make sure you follow share, like review so more women can find these very important conversations.
- 56:54Have a wonderful day.
- 56:56Take care of yourselves and make sure you do something for you by you because of you, especially when you are in caregiver mode.
- 57:05Thank you again, Lily, for being here.
- 57:07So appreciate all of our.
- 57:09Conversation today.
- 57:10Oh, thank you so much for having me.
- 57:12It's been a pleasure.