The HME180 Podcast – Episode 10 – Anne Rue, Family Caregiver Expert

Introduction: Welcome, you’re listening to the HME180 Podcast. Every month, your host, Sue Chen will interview passionate experts in the HME industry who are fearless, innovative, and committed to their work. On this month’s episode, our special guest is Anne Rue, family caregiver expert.

Sue Chen: Hi, I’m Sue Chen and welcome to The HME180 Podcast. I cannot believe we are at almost the end of November. This year has flown by. Well, November is National Caregiver Month, and I can’t think of a more important human role. Perhaps the most vital position and place we can connect as human beings. Caring for someone is a vast opportunity of kindness, compassion, and love. You can care with just a text or hug, or a gift, or a gesture, or with empathy, or act of kindness, or with thoughtful words, or a beautiful meal. However, in a league of its own, in the vastness of caring is caregiving, because it requires the most of our human capacity. It requires the most kindness, compassion, and love, as well as patience, courage and perseverance, and it is hard, very hard, the hardest thing you will ever do, and there are no trophies to be earned, or speeches in your honor. There is just you, making someone feel better, feel safe, and feel loved. Often when they are suffering, scared, and vulnerable.

There are 37 million people in the US. Mostly close family members that provide unpaid elder care. Despite these massive numbers, there’s often very little support or resources for these caregivers, leaving them feeling lost, scared, and often completely depleted. I want to change that.

My very special guest today is the ultimate caregiver resource. In my many years, working and connecting with caregivers, she is one of the most knowledgeable I have known, not only because she lived it with both of her parents, but because she is one of the most determined, resourceful, and loving people I know, and she applied that: her superpowers to caring for her parents. As one of my best friends, I was part of and witnessed that journey, and tremendously proud and honored to have her on the podcast today. Anne Rue, my dearest friend, welcome to The HME180 Podcast.

Anne Rue: Thanks, Sue. I’m so happy to be here.

SC: So am I. Let’s start by sharing with our listeners when your caregiving journey started with your parents, maybe start with your mom, and then your dad.

AR: Sure, definitely. So my mom was diagnosed with Alzheimer’s at the age of 66, and she died at the age of 87. So that’s 21 years with Alzheimer’s, which is significantly longer than most people have Alzheimer’s. So the first ten years was pretty stable because of medications, and then she started going downwards. And Daddy took care of her at home as long as he possibly could, and then he realized that he needed help. So he moved her into a memory care facility by my home, and he sold their home and moved a mile away from me. He knew that having family around was going to become really, really important, both for my mom and for him as he continued the aging process. So he gave up everything in his life to move here in order to take care of his wife. So she spent eleven years in memory care, and eight of those years she didn’t know us, and the last four years she really didn’t speak, didn’t do anything, couldn’t feed herself. Nothing like that. So that is one very difficult path.

The other path was with my dad. and when he moved Mom into memory care, he moved in with myself and my husband for about six months. Which was great having him with us, but he also wanted his independence, and so he got an apartment close by, and then, a few years later, he was diagnosed with Parkinson’s, and a few years after that he needed more help, and he made the hard decision to move into assisted living. And so at that point, I had my mom in one memory care, facility, and my dad in an assisted living facility, both about a mile away from me.

And those are two really different paths. But I was with them every step of the way, and honored really that I could be there for them, and to help them on the entire path, and to exit this world. Both of them died in June, 25 days apart from one another. And wow! And so you can tell, my grief is really deep.

SC: Yeah.

AR: But I also am so thankful and proud because I know that I did absolutely everything humanly possible to help their last chapter be the best it could possibly be.

SC: And you did, and it was truly an honor to be by your side and watching this, and that’s why I’m so grateful to have you on the podcast today. Because so many people, you know, have these places in their life where you’re making these big changes with your parents. And where do you get started? Where do you look for places to move them into? So let’s talk about this transition.

And so, as far as like finding the resources, because no one’s really ready for this. This is gonna happen to everyone hopefully, if you’re aging with your parents. But we really don’t know where to get started. So with your mom, and being diagnosed with Alzheimer’s, finding the best place for her, maybe share with us your resources there.

AR: Absolutely. The Alzheimer’s Association is the most incredible organization. Leverage them. They have so many different free classes for you. I went to a monthly group therapy for eight years. That was incredible, and helped so much because there were people in that group who were years ahead of us, and I was learning from them, also from the woman who led our group. Also Alzheimer’s Association, you can call them 24 hours a day, and I know that Parkinson’s has organizations just like that. So whatever the illness is, learn as much as you possibly can about it, go online, learn what’s coming next. Right? So that that can help you to be more prepared. And also search out people who have been on the path before you. I call all the people in my life who have come in to help me, I call them my angels. Right? And each of these angels will bring you something different. Talk to friends, talk to doctors, talk to those people that have been through it before. We learned of my mom’s first memory care facility, because it was where my Alzheimer’s Association group was meeting. The next one, we moved her into a boarding care, which is a really small facility, and I learned about that from a neighbor. So you learn about things in really different ways. But just keep on asking people in your life questions and asking them for guidance.

SC: And when it comes to the transition with your dad, because he had several transitions. First, the big transition of moving to be closer to you, but also closer to your mom. A huge transition in his life, the transition of moving in with you and then moving into an assisted living. How did you navigate that with your dad, as far as connecting with him the conversations kind of working through these huge shifts that you were going to have to make?

AR: Huge shifts. I always said that Daddy was really good at making hard decisions, and with that I was really lucky because he did make these hard decisions in advance. One of the statistics that he and I talked about frequently was the fact that 63% of people who care for an Alzheimer’s patient like a spouse, die before the Alzheimer’s patient. And that is actually what happened with my parents. My dad died 25 days before my mom. But my dad was really good at looking into the future, and knowing that, for instance, he had to sell the family home, and that took six months to break down the house, to have an estate sale, to get rid of everything in their lives. And then to move in with us.

And all the while, it is so important to keep in mind that your parent wants their independence. You want them to be safe. And it’s something that one of the authors that I really looked to a lot. His name is Atul Gawande. He wrote a book called “Being Mortal”. And it talks about the relationship between adult children and their aging parents, and what each one of them wants. And I really worked to honor what my dad wanted. His independence, but also being there to help.

SC: Now, speaking of. And I think you said something that’s so important is that your dad’s independence. But there is the precarious part there, because, keeping him safe.

AR: Yes.

SC: And his independence sometimes merge together—

AR: Collide.

SC: And he might be thinking, he, you’re taking away some of his independence and decisions there. And so how did you navigate those rough waters?

AR: Yeah, one of the really rough waters is driving.

SC: Yes.

AR: My dad was almost 90 years old when he passed, so he’d been driving a really long time and removing someone’s right to drive is really tricky, and we were very lucky. I guess you could say that legitimately, because of a heart issue. His cardiologist said that he could no longer drive. But my recommendation to you is for those of you who are adult children taking care of your parents: Don’t be the bad guy. Have the have a doctor, be the bad guy.

SC: Ah.

AR: So you need to be in communications with your parents, physicians, all of their different doctors, and if you know that it’s time for them to stop driving. I really recommend that you contact their doctor, have a private conversation, and then, when you and your parent go in to see the doctor, it’s more of a natural conversation to have the doctor take that right away.

SC: That’s such great feedback. That makes me think about the networking. And because, just so you guys all know, Annie is a incredibly successful and an amazing person in her professional life. And one of one of her incredible skills is her ability to be able to network. And so you carried that skill that you do so well from your professional career over to caring for your parents with the same type of organization and energy. And so maybe talk about that, because I am watching you in this journey, was always so amazed at how connected you were with the care facilities with the doctors, because this massive network of people that are now involved with your parents’ care.

AR: So true, so true. Early on I got the nickname “Pushy Daughter”. It’s a really important thing to do is to be really pushy, but in a really kind and loving way. So pushing doctors for answers, not in a mean way, but in a positive way, right pushing for answers, pushing for medications that are needed, pushing to get your parent on the list, to move into an assisted living facility. Asking questions of the caregivers because they have so much information. These caregivers in these facilities live this every single day, and they’re amazing resources. Get to know them, you know. Not in a way of, you know, using them. But these people are lovely human beings, and really get to know them.

At Christmas, Daddy and I would walk around his facility and hand out cookies to the caregivers and to the residents. It was just something that both of us thought was really important, right? So, caring for the people while also leveraging their knowledge is really important. We also built a great relationship with our church, for instance, so we would have a Eucharistic minister come out every single week to take care of my dad, because having that connection with his church was really important to him. My husband and I would go and visit my mom every Sunday for 11 years. I would go and visit probably every other day. But keeping close tabs on everything is really important, because then you can see when things change. So for those caregivers who don’t live close by that’s a whole ‘nother, tricky situation, because you have to really rely on input from caregivers, for instance, to know what is going on with your parent.

Other resources that I was really lucky and blessed to have: my cousin lives right here. So she would help him with his spiritual life. My father had the resources to have a concierge doctor. So if we were in ER at two in the morning, I would call his concierge doctor, and she would talk with the ER doctor about care and what was needed, and medications that were not good for him. Things like that. Make sure to build your personal network of friends and family. You need help. You need friends to just laugh and cry with and learn from those who have been on a similar path. And again, going to those organizations like Alzheimer’s Association.

Also finding books that are resources, I did a lot of reading and learning. Another thing that another book I read was called “Creating Moments of Joy”, and I took that and owned that. And gosh! I started creating moments of joy for my parents 11 years ago, when Mom moved into memory care, and I really had a goal of every single time I had an interaction with my parent that I would bring them a moment of joy, and I transition that into my life, because how beautiful is that right? Just bringing a moment of joy to somebody else is so powerful and fulfilling.

SC: I love that you just shared that: is creating those moments of joy, but then cherishing them because there are so many other moments that around that that are so hard. And so you can keep the continuity of your relationship, your loving relationship with your parents, with that joy. Well, thank you for sharing that.

AR: Also you need to give yourself moments of joy right? Because being a caregiver is a really hard path. And again, talking about leveraging the knowledge of others. Please definitely do that, but also be conscious of the fact that maybe you have a full-time job, and you’re taking care of your children, and you’re taking care of your parent. Find something that will be fulfilling to you and to fill your soul. Because otherwise you’re just going to get depleted, and when that happens you’re no good to anybody, including yourself.

SC: And that is the rule number One. We’ve talked about this so many times where we would have conversations, and you would just say, “This is so much like I’m exhausted physically, emotionally.” And this is what I hear from a lot of caregivers, especially when they’re your family members, and these are your parents. It’s a physical toll, it’s an emotional toll, and you’ve got to take care of yourself and ask for help. Set expectations. So navigating the emotional part of it, and you said, you know, involving friends and family, and however you can, and communicating with them something that I was so impressed with was your spreadsheet.

AR: I love spreadsheets.

SC: Annie is a master spreadsheeter, and you know, like I said, you carry your skill sets into caring for your parents. Share with share with our listeners that that list that you made of keeping track of the people in your parents lives so you would have a communication tool that was easy if you did need to reach out to them, and you were overwhelmed. And I remember this especially when you’re towards the end of the life of your dad.

AR: Yeah. So I created a spreadsheet to track who are the important people in my parents’ lives so that I could help, for instance, reach out to one of my dad’s friends of 60 years and have a conversation with that person and have him talk to Daddy. Things like that. But also at the end of life, having all of these phone numbers, email addresses, mailing addresses, so that I know how to reach out to these people was so important. Also I helped Daddy for many years to send out his Christmas cards. So that was a great way for me to get all of their addresses, but really helping my dad stay connected with his friends was super important, and it also allowed me to get all of their contact information, so that when I was calling them or emailing them when my parents passed, I wasn’t struggling to find this information. Because you are juggling so much at end of life. So many emotions, so much work. Tying to find people’s contact information is really not top on your list.

SC: Yeah, you were so prepared in gathering this information. And so like, I said, two huge takeaways, here is one your networking skills with the people that were in your parents’ lives and caring for them, and then also their friends and people in their lives that you were tracking and keeping track of that information.

So let’s pivot real quickly, because a lot of the conversations that we’ve had over the many, many years were the things that your parents needed as they were aging, and the changes that they were going through. And I was so impressed at what you put together. You created this list, like a shopping list of the things that your parents needed by stage, or what they were going through. And you also, in part of your network, you formed a partnership with your local dealer, and with the products. So maybe share with our listeners kind of your strategy around that. Because your parents needed a I mean—when you age and aging at home and aging for all these years and transitioning, you need a lot of stuff.

AR: Yeah, you really do. And kind of like, new parents have a newborn. They bring home their new baby, and they have certain items that they need, and three months later that baby doesn’t need that item anymore because they’ve grown and have changed. The same thing happens with the last chapters of life. So, for instance, going to my local dealer. I mean, I went to the dealer for probably 20 years, and I knew the employees there, and they were there to help me. And 20 years ago the products that we were buying were very different than the products that we were buying at end of life. But the dealer had all of those products, and so I would walk the store with the employees to learn. What do you have here? Right? So 20 years ago I didn’t need a raised toilet seat for my parent. But at the very last chapter, you bet we did. Right? So at least I knew about things like that. So educating yourself early is really important so that you don’t feel as though you’re doing everything too late.

SC: Yes, and that is this shopping list that you put together, which I will share with our listeners in the show notes—

AR: Absolutely.

SC: —is so comprehensive because you are looking at your parents change when it comes to nutrition, hydration, and even some simple tools to keep them safe that don’t cost very much. I mean, it’s so thorough because I think that’s a place that can be hard to navigate. But once again, in your network of relationships was your relationship with your dealer. And that they were able to educate you on all these different products that could be helpful.

AR: Right, right. Super important. And also I am incredibly lucky because you’re my best friend. So I have you as well.

SC: We had so many conversations about, you know, different products and different walkers, and also conversations about getting your dad to use them, you know. Use a walker, I mean, because we know that that’s your dad is very independent, and he is—you know he never imagined—I mean he was skiing up until what age?

AR: Skiing. Gosh, up until 78? 80?

SC: Yes!

AR: Somewhere around there. Yeah.

SC: My goodness, right? And so he’s not going to imagine that he’s going to ever need a walker. But there was a time that he did.

AR: He did. Yes.

SC: And so let’s share about having those conversations with your dad about products that he needed.

AR: Yes. So, being open, honest, caring, and trying to put yourself in their shoes, because they don’t want to be having mobility issues, for instance, right? After 86 years of being able to ski and run, and whatnot. Acknowledging that you need a walker, need a cane, and sometimes need a wheelchair is very difficult. So we did a few things. We went to the dealer and we test drove things. We also again, because you’re you, You would come to my house, and we would test drive things. But it was great, for instance, when we would go to the dealer because the employees, again, they knew me. And they knew what we were doing, and they were there to help. And they’re super caring. And they helped Daddy get through the difficulties of acknowledging that he needed the help. And we also had multiple products along the way. I want to say we had two or three different walkers. We had different types of canes. Yeah, because we needed different things at different points in time.

SC: And I remember when we were on that test drive with your dad and the fact that he was test driving it. He actually felt empowered. He did not look like somebody that was being forced to use a walker because of the way that we presented it to him.

AR: Correct.

SC: Like, we want you to try this out and tell me how you feel. And he did. He’s like, “This feels like this, and I like how this works.” And so, then he’s in control. That worked really well with your dad.

AR: It really did. Yeah. And it also, all of those things helped him keep his independence. And that is so important. And it also helped me because I knew that he was safe.

SC: Yes, that’s so important. Well, NOVA has, as you know, now, a test drive program inspired by all the experiences I’ve had, including with you to encourage people to go on test drives with their parents and call it that. Say, “It’s not about getting you a walker. I care about your safety. I know you care about your independence. Let’s go for a test drive.”

AR: Absolutely. And having conversations with your parents early. Talk about the tough things when the times are not tough. I found to be really helpful. Talk about things like end of life. Talk about moving into an assisted living facility. Talk about walkers. talk about all of that. Talk about the finances years before you need to have that information and then make sure to write it down, so that you remember what it is that they want. But it’s so much easier to have those conversations early, and then you can readdress it and go back to it again and again, and not just spend, you know three hours digging deep when they’re sick and dying. That’s not the time to do it.

SC: And this is again another place where your amazing organizational skills come in because you created a complete outline of these conversations that you needed to have with your parents, and created a checklist to make sure that you were having—if maybe he didn’t want to have it, you would still go back to it to make sure that it was all covered. And so I want to cover a couple of things while we can. And one of them is end-of-life care. Because this one, this is so so difficult.

AR: Yes.

SC: And it’s so scary, and it’s inevitable. But there are many options in this end-of-life care, and I want to spend a little bit of time with that, because this is a very painful but very beautiful place that we will all end up with, with our parents. And so maybe share with us some of the things you did in planning for this.

AR: Absolutely. So my husband and I did put together a whole list of things that we wanted to talk with Daddy about. Health, finances, end-of-life, cemetery, funeral, all of that. And these are not conversations that you just sit down one time and have this conversation. We had these conversations over many years, and sometimes it’s just a quick five minute conversation about something, and other times it was much more lengthy. There is an author, whose name is Barbara Carnes, and she has all these different little ten page booklets. One of them hospice calls the “Little Blue Book”. And the title is “Gone from my Sight”. And it is an amazing book about end-of-life. Because none of us—unless you’re professionally in end-of-life—nobody deals with this very often. So it’s all new information for us. But for the people who work in this world, they see it all the time. Lean on them ask them questions. Things like “hospice” sound really scary, because, you know, I didn’t really understand what hospice was before I started on this path. A lot of people think that hospice is a place. But hospice is an entity, right? You move on to Hospice when doctors believe that someone has less than six months to live. Hospice doesn’t stay with you 24 hours a day. The nurse will come out a couple times a week to check on the vital signs. You are going to need to figure out how to manage care for your parent 24 hours a day. You cannot do this alone, period. You need help, and it helps so much to have built your community along the way, so that you know who to reach out to. Who can be resources for you. Again, the dealer is really important, because there are things that you need at end of life that—it comes fast, right? You need these products immediately when you need them. Those are some of the things that come to top of mind.

SC: And I think that that’s kind of the realization is that: in this very scary place, when someone is leaving and they have limited time left, and you know that they’re going to be dying, that you can still improve their quality of life.

AR: Yes

SC: You can still give them dignity and comfort so they can be present with the people that they love, as they’re saying goodbye.

AR: You can still bring them a moment of joy even in the dying process.

SC: And comfort and dignity.

AR: Absolutely. And the other thing that’s really important, and you and I have talked about this a lot, is having a really what I call a “clean” relationship with your parent. I get it. I was really lucky that I had a great relationship with my parents. And for other people this is going to be a lot more difficult because they might not have that same kind of open, loving relationship. So there’s going to be other things that they’re gonna need to maneuver through. But make sure that you have a clean relationship. Is there anything left to be said? Don’t wait until the very end. Make sure to have those conversations along the way, because the absolute last thing you want is to have any form of regret.

SC: Yes, regret and remorse are two different things, and regret is something that can carry with you and be hard to live with.

AR: Yes.

SC: I want to touch on something that I know that it’s on a lot of people’s minds, and it’s kind of navigating through the finances, the state planning, all these things that we’re not quite ready for. And you said, like, start planning early, start having these conversations early. So there’s a lot here, but maybe just share some of the basics of navigating these big topics with your parents as we are preparing with them.

AR: Again, start early. Don’t wait until they’re sick and in their last chapter to have these conversations have them early. So, for instance: finances. Things like, what is the login ID and password for all of their accounts? Obviously, there’s got to be a great level of trust for them to give you all of this. And hopefully, you know you have that with your parent. But get all of this information because you’re going to need to access this. As long as you’re the POA, you have the legal right to access things.

So get this information in advance, put it into a password vault so that you have it. Have they done a will? A trust? Have copies of that? Have it in a password vault as well. Have a POLST. It’s in California, it’s on a bright pink piece of paper, but it’s basically part of the advance directive. Have that ready. I had what I called my hospital bag. So I kept it in my car, and I had copies of all of this important paperwork, as well as the list of their doctors, contact information, their illnesses, medications they were taking, medications they couldn’t take. Have that hospital bag ready to go. I know that’s kind of a detour from the finances. But I just thought about that.

So, going back to the finances, what are the recurring bills that they have to pay? How do they pay them? What are their sources of income, and how do they get that income? What accounts are in the trust? Can you access their accounts as the POA. Get a deed to their house, a deed to their car. Marriage license. You’re going to need the marriage license at some point. You’re going to need their driver’s license or their identity card number. You’re going to need all of this information at some point in time, and it is so much easier to get it early when they’re not sick and not dying. And save it. Be ready.

SC: That’s great feedback on that, because it’s vast, right? There’s so many things, so start early and start having those conversations.

AR: Yes.

SC: So as we close, I want to maybe share some of the takeaways that we’ve talked about today. I think one of them is: start early, having these conversations in an organized way. Have a checklist. Being proactive. Having a strategy. All the things I think that—I mean as we’re all older adults now. Right, Annie? You and me.

AR: We are older adults now. [laughs]

SC: We are experienced, we have resources. We’ve been professionals for a long time. And it’s kind of applying those skills that we’ve learned over the years to something that is going to be one of the hardest things we go through, which is our aging parents, and how they’re going to age, and how they’re going to die. What are some of the other takeaways that you want to share with our listeners?

AR: So, being pushy daughter: really, really important. Do it in a respectful way. Ask a lot of questions, write everything down. Be super proactive, and keep those lists because you’re going to need that information. Always think about what could come next. It’s never going to be a straight line, but as long as you’re thinking about what might come next, you can be more prepared for that. And then also with that, you can pre-purchase products that you’re gonna need. Take care of yourself. Build your community of angels so that you have that network. Communicate with your parent. Really listen in a caring and loving way because they’re scared, right? This is this is scary for them. They don’t want to be going through this. Bring them a moment of joy, give that to them. And then love them for as long as you have them on this earth with you, and don’t have regrets. I would say those are some of my biggest thoughts.

SC: Those are such wonderful thoughts and beautiful messages to share with our listeners. And our listeners are really anyone that’s out there, because I think we’re all going to be caregivers, you know. We hope that our parents age to the point where we are caregivers. But then also our HME180 community. That’s part of this network of care. Because it takes a village. It takes many people. It’s the dealer, it’s the PT, it’s the doctor, it’s the home care worker, all kind of coming together to be able to provide this really incredible care during someone’s toughest last chapter of life.

Well, this week is Thanksgiving, and I am so grateful for our community of caregivers, and I want to acknowledge what you do. It is such hard work, but there’s nothing more incredible. I think about the journey you’ve had with your parents, Annie, and I can’t imagine anything more beautiful and amazing that you’ve done in your life, and you’ve done so many amazing things than truly being with your parents. You know every step of this way.

AR: I’m so thankful that I was lucky and blessed enough to do that for them.

SC: It really is the greatest blessing. And so, as we look upon this week of Thanksgiving, let’s cherish our time with the people that we love. There are more resources, we’re going to send some. Annie’s put together this incredible, like these lists that she has that shopping list, the conversation list. We’re going to put that in the show notes. Also, the HME180.com website, we continue to build resources, tools, fall prevention guides for our caregivers and our loved ones, and our aging parents and people that are recovering.

AR: Great resources.

SC: Yes, and we’re going to continue building more and more resources on that website.

Well, Annie, thank you so much for being on the podcast today. And I’m so grateful for you and our friendship and all the information you shared with everyone today.

AR: Thank you so much, Sue. I love you, and thank you for having me here. I loved sharing this.

SC: Oh, it’s so valuable! I love you, too, and thank you to our listeners. And just for context again this week is Thanksgiving so grateful for all of you guys out there and have a wonderful Thanksgiving holiday.

AR: Happy Thanksgiving. Bye.