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Episode #20 - Caregiving: Strategies and Resources for Women with Lili Udell Fiore

Eric Blake: "There are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need a caregiver." - Rosalyn Carter

Wendy McConnell: Welcome to the Simply Retirement Podcast with your host, Eric Blake. I'm Wendy McConnell. I'm wondering why you picked that quote. 

Eric Blake: You couldn't guess from that quote, could you? That we're going to be talking about caregiving and caregivers and supporting caregivers? 

Wendy McConnell: Yes, and you know, it's not been that long since, dear Rosalyn…

Eric Blake: … passed on. Just a few weeks ago.

Wendy McConnell: We're hearing a lot more about her, which is great because she just had such a big heart. 

Eric Blake: With reference to that quote, there are some stats I want to share because I think they stress the importance that caregivers play in our world, and more specifically the fact that so many women serve in that role. These stats are from caregiver.org, and the first one says that an estimated 66% of caregivers are female.

That's Number One. Number Two, the average caregiver is a 49-year-old woman who works outside the home and provides 20 hours per week of unpaid care. And the last one is that men play a role in caregiving as well, providing assistance. But female caregivers may spend as much as 50% more time providing care than male caregivers.

Our audience is made up of women who are trying to navigate their retirement journeys. Many of them are on their own, and a lot of them are serving in that capacity. We want to make sure that we bring resources to the table to make sure they stay on track. That's really what this episode's all about. 

Lily Fiori is our guest. She and I were fortunate enough to participate in a virtual caregivers conference organized by another previous guest, Jeannie Doherty. My focus at the conference was Social Security planning for caregivers, while Lily's focus was not only on how to provide the best possible care for your loved one, but how to do that without losing control of your own life? In her own words, Lily can help her audience learn how to bring peace, organization, and a sense of control into your life as a caregiver. That's what I'm hoping she can do today: help us navigate this caregiving journey in a way that not only helps you maintain your sanity but hopefully also helps you stay on the right path for your own retirement journey. 

Lily is also an author. I'm not sure if the book is out yet, but we'll talk about it here in just a bit. She's the founder of Much Love Lily, where she shares ideas and support for caregivers. Lily Fiori, welcome to the Simply Retirement Podcast. 

Lili Udell Fiore: Thank you, Eric. I'm thrilled to be here, and I love what you do to support women. Thank you for that. 

Eric Blake: I appreciate that. You and I have gotten to know each other a little bit over the last few months. I think we actually connected through Instagram initially. I saw a lot of your content being posted. What you're able to do and the resources you're able to bring to the table are just awesome. That's why I wanted to have you on the podcast. I think that's a good place to start, just sharing a little bit about your background and how you got into what you're doing today.

Lili Udell Fiore: Well, my dad was an Episcopal priest. He was head of the pastoral care department at the big hospital where we lived in Vermont, and I was raised to always think of others. That was just the way it was in my house because my dad could be called at any time for someone who needed him, someone who was in a personal crisis at the hospital with one of their loved ones. That was just the way I was raised to think, and it never changed through my family's journey with grandmothers and my beloved Aunt Esther, who I write about in my book, and then my dad and then my mom.

I came up with a lot of different systems and had a lot of trials and tribulations in my caregiving journey with them because years ago there weren’t a lot of resources. I looked and looked. I was working full time and my husband was a workaholic, so he did what he could, but he had his own stuff to do.

I had to deal with raising my daughter, partially helping with two wonderful stepsons, and it was a lot to juggle. Anna lived in Chicago at the time, and more than once I had to literally throw clothes in a bag and jump on a plane because she needed me.

So, after moving down to North Carolina, I decided that I had a lot of information and resources and had gone through a lot of blood, sweat, and tears that could help other people. I knew that if I could share my journey with people and save them some of the hardships that I went through so that they didn’t have to experience that, it would make it all worthwhile.

Eric Blake: I think that a good place to start might be a definition of what caregiving is. 

Lili Udell Fiore: Well, a caregiver is anyone who has someone in their life who is not well. Maybe it's because of an accident. Maybe it's dementia and a cognitive diagnosis. Maybe they have an incurable disease and have been given a certain amount of time to live before they succumb to an illness. I can help in all of those situations, especially when they’re dealing with a parent or an older relative.

There's a lot of friction because it's awkward to turn into the parent for the person. That wasn't a parent role for us, and I can help figure out and decode what's going on with your relationships and help you figure out how to constructively organize things and separate yourself so that you do not take everything personally and understand where they're coming from.

People who are being cared for can become very grumpy and disagreeable because they don't like what's happening with their body or their life, or they don't like the lack of control they have. That's all very reasonable and normal. The problem is that if you're the caregiver for that person, you only have a finite amount of time. You're at the end of your rope because you're trying to get your work stuff done, take care of your kids, your spouse, your pets, your house — the list goes on and on, plus whatever you're doing in your community.

You have zero patience for that ornery loved one that you're caring for. I can help you figure out through proven tools how to manage that. I have lots of questionnaires and ways that we can help the person being cared for feel like they have as much control as possible of their life, even if they actually don't.

There are things we can do and approaches you can take so that they feel good about things. 

Eric Blake: One of the most fascinating things that I pulled in going through the information in your book was where you talked about how important planning is. Being a financial advisor, I always talk about planning. If you're going to have a successful retirement, it's going to take planning. You can’t just throw a dart and see what sticks. We need to have a plan. Can you help us understand why planning is also an important part of caregiving?

Lili Udell Fiore: Well, if somebody falls and breaks a hip, there's nothing you can do. You have to deal with it in real-time. But what you can do is look at your situation and figure out how many people in your life might end up falling into your lap as people you’re going to be responsible for. Maybe you're their chosen power of attorney for financial things. Maybe you're their medical power of attorney for medical decisions.

Try to figure that out. If you're in your early forties, look at your radar and figure out who is in that net, and then work with them now. Ask them whether they have thought about aging and what they are going to do. Ask if they have their legal documents taken care of and whether they have advanced directives.

Whether they have their power of attorney taken care of. If they don't, then talk about getting that done and having them let you help. You have to do it in a way that's not confrontational, because nobody likes to be told what to do. You can tell them that you’re getting your paperwork in order and were wondering if they've got theirs in order. Tell them you really want to make sure that somebody knows what their wishes are for everything. If you broach it that way it will alleviate so much of the difficulty because you know what they want. You know if they want to live in a certain retirement community and to move there eventually, or if they don't and they want to stay at home. You need to know if they have long-term care insurance or if they have a life insurance policy that converts into long-term care coverage for if they have an accident or something. I also think it makes sense to look at their family history. Is there Parkinson's on both sides of their family like there is in mine? I did the 23 and Me and found out that I don't have the gene, but I could still get it other ways, right?

They don't test for all the genes, but at least I know a little bit. I think it's really important to look at all those things and try to plan ahead. If you can get your loved one into one of these wonderful communities where they can live independently but then move to assisted living when they can no longer live independently, and then into a nursing wing for when they decline to the point where they can't live at home, or into an assisted living section. That's a great setup. My grandparents did that. And it was wonderful because nobody ever had to make these decisions for them. They chose, they made the decision.

Eric Blake: I'd say one of the other things I’d encourage our audience to do is to go back and listen to some of our past episodes on these exact types of topics. Go back to episodes 10, 11, and 12, maybe even Episode 13, where we talk about different living arrangements for seniors so that as you're making that transition, you know some of your options for getting out of your house. Especially if there are healthcare issues or some immediate concerns, and home care. How does home care work? How can you stay in your home as long as possible?

I think one of the things that would be valuable for you to share is about having those conversations. It can be really difficult depending on the relationship. Are there any additional thoughts or cues or things that you would suggest that people can use to try to get over that hurdle? 

Lili Udell Fiore: First of all, I would set aside some time. So, if you live out of town, say, “Hey Mom, I want to talk to you. Can we do a Zoom call?” If they're not tech-savvy and they don't do Zoom, then ask whether you can talk on the phone. Make a date with them, and put all your technology away so you don't get distracted. Make sure no one's going to come running into your house. Make sure the kids are set so that you can really focus on your loved one. Then give them a heads up. Just say, “Hey, there's some serious stuff that isn't fun to talk about, but I really want to talk about it with you because I love you and I want to make sure that we honor all of your wishes.”

Tell them, “I need to understand what your wishes are because we never talk about this stuff because it's not fun. And I know it's not fun, but let's talk about it because I don't want us to do anything that you wouldn't have wanted. We need to know what you want to make sure it happens.” I think that's really important. If they're grumpy and they don't answer, then just keep working on them until they do.

If that doesn't work and too much time goes by, I suggest getting some siblings or some other relatives and doing a loving intervention where you say, “Hey, we really need to get this figured out because if we don't, that leaves everything up in the air, and that's not right. That's not fair to you. We need to know what you want to do. 

Eric Blake: The other thing I wanted to ask you about is, once you've gotten to that point and you’re in a situation where you’re now serving as a caregiver, you're playing an important role. Just the day-to-day can become extremely stressful. It can be very challenging. Are there maybe two or three things that you would say people should be doing daily to keep their sanity and keep themselves on the right path? Because it's a difficult situation.

Lili Udell Fiore: It's a really difficult situation. The number one thing I love is something that both the priority planner that I created for caregivers and my book start with: It’s Don Miguel Ruiz's The Four Agreements. The Four Agreements are to be impeccable with your word, don't take anything personally, don't make assumptions, and always do your best. If you live by those four tenets, you’ll have a much better journey as a caregiver. You can't take anything personally is paramount. 

They're going to be grumpy. They know you love them no matter what. So if they're going to be bitchy, they're going to be bitchy to you because they know it's safe. They know that their feelings are safe. Is it fair to you? No, but that's, the reality. If you've got an enlightened loved one who you're caring for, then celebrate them and celebrate how easy they are to take care of. That's wonderful, but that's not necessarily what everybody has. 

It's really hard, especially, when you're hiring caregivers to bring into the house. A lot of older people will fire them. My mother fired people. My aunt fired people for no real reason. Expect to go through that. Expect that they're going to resist and, and that it's going to be hard. If you assume that it's going to be hard and it isn't, then wonderful. But don't think it's going to be easy, because it's not.

You're asking them to change who they've been for however many decades. Nobody likes having strangers in their home. My book has How to Hire a Caregiver in it. It addresses what I call my sensory care method, which suggests evaluating all five senses, and your sense of fulfillment on top of that.

If you go through that with your loved one first, physically assess what works and what doesn't. Can they still taste sweet things and sour things? Maybe they can't. We don't even think about that. Do the full inventory with them, then go through and find out what they like. Their tastes may have changed over the years. It's really important to check in with them and figure out who they are now. My grandmother used to answer for my grandfather. If somebody said, “Hey, Carlton. What do you want in your coffee?” Martha would answer, “Oh, he'll take two creams and a sugar.” But maybe Carlton didn't like two creams and a sugar after 50 years of marriage.

Maybe he didn't want sugar in his coffee anymore, but she didn't give him the opportunity because she thought she knew him, and maybe she did, but maybe she didn't. We all are guilty of doing the same things with our loved ones. Just because they've always liked something doesn't mean they like it now, especially if they've been chronically ill or have something like cancer.

Many of those chemo treatments change taste buds. COVID changes taste buds, right? Something that may have been a favorite for them before may no longer resonate with them, so you need to pay attention to that. My book is full of tips. Surround them with the things that they love; the colors that they love, the posters that they love.

If they're a baseball fanatic, then make sure they always have a baseball game playing in the background. It probably doesn't matter if it's a 20-year-old or a 10-year-old baseball game. Surround people with the things that they love, because that usually cues them back to their childhood or to some time in their life that was comforting. It brings security to them and they’ll be less ornery because they’ll feel more secure and more stable and more loved. 

Eric Blake: I wanted to talk about the book because you provided me an advance copy and I had a chance to go through it. We keep talking about it like it's a book, but to me, it’s like a manual, like a how-to guide.

It's not written about what your life as a caregiver was like. You actually give actionable steps, worksheets, and things I would never have thought of. Can you talk a little bit about the book? Maybe some examples of things that people wouldn't think of? Some of these guides and checklists and things that you've got in there are just amazing.

Lili Udell Fiore: Thank you. I've got how to hire a caregiver. Things to look for when you're looking at nursing homes. One of the things I always tell people when they're looking at nursing homes, aside from the smell test — you never want to put your loved one in a nursing home that smells bad because it means that they’re understaffed and not keeping on top of their laundry — but look at the staff. Are they fighting with each other? Are they grumpy with each other or are they a team that’s working together to get things done? You want to put your loved one in a place that has a good, solid dynamic between their staff, where they're helping each other as a real team.

That's very important. There are lots and lots and lots of personal care tracking sheets, and medical care tracking sheets because the key to being on top of your loved one's care is to have a three-ring binder and have the sheets that are applicable to your loved one. In that binder with a pen that's always available in backup sheets and backup pens so that any caregivers can write their vital signs, down. How often do they have pain? They can write down if there's a wrong word being used. Write down conversations. Is your loved one talking about someone who died several years ago?   If they're talking about their personal life, it's important to know that because they may be transitioning sooner than you think they are. Never doubt that they're seeing the people they say they're seeing.

Sometimes people have hallucinations, but more often than not, they're actually seeing things. Just be aware and understand. Another thing that happens is that when people are getting close to dying, they'll talk about wanting to go home. I have friends who have said, “Oh, my mom kept saying she wanted to go home, and I kept telling her she was home,” What I explained to my friend was, “No Honey, they're not talking about their physical home. They're talking about going home to God. So, say, ‘Yes, you're going home soon.’” If they talk about going on a trip, say, “Yes, you're going on your trip, your transportation's already taken care of, they're going to pick you up. You don't need to worry.” Because sometimes people start to ruminate, “I'm going on this trip, but I don't know how I'm going to get there.” Tell them not to worry, 

Eric Blake: That's one of the things I've talked about on some of the past episodes. We're dealing with a lot of these things with my grandmother. We are very fortunate she’s still alive, but we see some of these things, some of the challenges she has with remembering things. It's amazing, the things she can recall from several years ago, but the challenge is the minute-to-minute, forgetting something she may have said in the last hour.

One of the things we are fortunate in is that we have some very good caregivers who come into our home. I wanted to touch on that because you had a great post on Instagram in the last couple of weeks or so about hiring a caregiver.

The point of the post was that if you want to keep your loved one at home as long as possible, you’re most likely going to need more help. Can you help us understand more about why that's so important, and maybe some of the key factors we need to think about or consider when bringing someone in to help take care of our loved one?

Lili Udell Fiore: Sure. The number one thing I tell everybody is that even if you only need someone one morning a week and you’ve found someone or have heard of someone who can come in and do that one morning a week or four mornings a week, you need to fill out the paperwork and get set with four different care agencies, because as things progress, unless they move to a nursing home, you're going to want to have vast resources. I promise you that if you know your loved one can't be home alone during certain times of the day, or they get to the point where they can't be alone at all but they're still at home, you don't want to mess up and not have backup.

You need four deep backups for caregivers. People will call out sick. They’ll call out if your loved one is grumpy and mean to them. They will call out because they don't want to deal with your loved one. You need to have those relationships started. You don't have to give any money to these companies when you sign the contracts. You just have to set it up and get the paperwork done so that they're there and you can use them when you need them. Make sure when you look at the different agencies that you find out what's included in their care with their CNAs. Will they go on walks? Will they do the dishes? Will they do housekeeping? Find out specifically what each company is willing to give for their dollar rate, and then hire the four companies that give you the most bang for your buck.

That's really important. Find out who can give you care on very short notice. Ask the care managers who you get assigned to whether they’re going to try to get you a caregiver if someone calls out at the last minute. Ask if they take after-hours phone calls. If the person who's supposed to be there overnight calls in and says their car broke down on the way at 11:00 PM, do they have someone you can call to come and do the night shift? If they don't have that, then you want to look elsewhere. You want to get the most equipped caregivers because this is your time and your energy that you're talking about.

If you can't get the resources you need through the caregiving agencies, you're going to be the person who ends up covering the shift, right? You or somebody else in your family. That is never fun when you have plans. 

Also, I really believe in boundaries. Do not, as much as you love the caregiver, do not take them into the breast of your family and treat them as a family member. What can happen is that if the caregiver experiences a financial problem in their life, they may mention it to your loved one and your loved one may feel challenged or upset or awkward that they're not helping this person out of this financial difficulty. You don't want to go there, so you want to keep that boundary up and keep it professional. You can appreciate them. You can give them gifts at Christmas. You can nominate them for Caregiver of the Month with their agency and support them that way and be enthusiastic and write them great reviews and recommend them to other people if they're not working full-time for you. But do not get too close. 

Eric Blake: Right. We already talked about your book being like a user's manual for caregivers, but are there maybe two or three other resources that you might suggest — websites or other books or things like that that you would suggest caregivers look into?

Lili Udell Fiore: Sure. I have a huge resource section on my website, which is growing exponentially, and I also have things about life after death there. I have alternative healing. I have things about angels. All these things come up when someone we love is dying. I try to have vetted resources on my website for anything and everything I can think of, and I'm adding more resources all the time.

I'm going to have a huge caregiving resource section as well. There are national resources for caregiving. The other thing I wanted to bring up is that there's also a lot about getting ready for death, for everything that is going on after your loved one dies.

The biggest thing I hear and have experienced myself is that when your loved one dies, everybody says, “I'm so sorry. I'd love to help you. Let me know.” They always say, “Let me know.” Well, baloney. You don't need to let them know. You're the one who lost someone. So, there are four or five sheets that have all the different tasks that come up when your loved one dies, and there’s a place under each one to fill in the names, phone numbers, and emails of people who want to help. If somebody says they want “Great, pick something.” There's one for the day of the funeral, for who's going to pick up Mrs. Smith who doesn't drive anymore but wants to go to the funeral? Things like that.

The last chapter has different things about grief and the different ways that people grieve, and the different circumstances and how it can be challenging. 

Eric Blake: Where can people find your book?

Lili Udell Fiore: On Amazon, Barnes and Noble, Babo Press, and Hay House. 

Eric Blake: Perfect. How else can our audience connect with you or learn more about what you do and the services you offer? 

Lili Udell Fiore: All they have to do is go to www.MuchloveLili.com or email me at Lili@muchloveLili.com. You can get me anytime. I answer all my own mail. I'm here to help and I have lots of different packages. I can do some consulting and help you get set up with your loved one. I can do some crisis management if that's needed. I also have packages where you've got access to me around the clock because guess what? Caregiving doesn't stop just because it's bedtime. I'm available to people. If they need me at 2:00 AM or 3:00 AM that's fine because I've been there, and I know what it's like to need someone at that time.

Eric Blake: We'll make sure we have all the information that Lily just shared in the show notes and the summary of the episode. Thank you so much for joining us today, Lily. If you are currently a caregiver or you expect that you will be in the future, please connect with Lily, get a copy of her book, and review the resources she's talked about and that are on her website. She's an absolutely amazing resource. 

If you're interested in learning more about us at Blake Wealth Management, please go to our website, www.BlakeWealthManagement.com. You can listen to past episodes. You can sign up for our weekly Simply Retirement newsletter, and if you're a woman who is less than five years from retirement and you have questions about how to optimize your Social Security, minimize lifetime tax liability, or invest smarter, just click that Start Here button on the website to learn more about our process for helping you make an educated and informed decision about whether we’re the right firm to help you on your retirement journey.

I want to finish with a quote from Lily's book, from the Taking Care of You chapter.

She writes, “I want you to remember this. You are human and you have limits. This isn't about blaming or not being strong enough or good enough. It is about taking care of yourself so you can take care of those depending on you. There are also a lot of people who love you very much, and even if they don't know how to express it or show it, you do not want to be. One of those, roughly 30% that literally died trying to take care of their loved one and everyone and everything else but themselves.” 

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