Lisa Skinner interviews Jill Poser: Aging in Place

[00:00:03] Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies & Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30 plus years of experience as she guides you on a new path

[00:00:28] to a better relationship with those you care for. Here's Lisa. Welcome everybody to another new episode of the Truth, Lies, and Alzheimer's show. I'm Lisa Skinner, your host. And today we are going to be talking about a personal and professional journey that my special guest Jill Poser has experienced.

[00:00:57] And I think that she's going to have a lot of valuable insight to contribute to today's show. So help me welcome Jill Poser. Welcome to the show, Jill. So nice to have you here. Nice to be here. So let me tell you a little bit about Jill. Jill Poser.

[00:01:17] She is the founder and principal of Life Care Concierge of South Florida. It's a premier nurse-led care advocacy and management practice. And she is a nationally recognized leader in aging life care management, private duty home care, and life care planning.

[00:01:47] With deep compassion and patient-centered evidence-based approach to dementia care, Jill empowers clients to age in place with dignity, safety, and a renewed sense of purpose. Through care solutions that are as unique as the individuals themselves.

[00:02:12] Based on that, as you all know, it's aligned perfectly with what I teach, what I advocate, and what I value. And that is the entire reason I wanted her to be here with us today. So you can hear a different perspective on those core pillars. So she actually is quite accomplished.

[00:02:39] She's a certified care manager through the National Academy of Certified Care Managers and a certified geriatric care manager through the International Commission of Healthcare Certifications. So very well qualified to be talking with us today. So let's dive into the conversation. Let's start off by opening up the topic.

[00:03:09] Hearing Jill tell us why she thinks Alzheimer's disease and the other 150 known brain diseases that cause dementia is often a diagnosis that impacts the entire family. I talk about that all the time. But I can't wait to hear her perspective on that because it does. It really does.

[00:03:38] Jill, what's been your experience on that particular topic? I'm going to actually go a little personal here and then bring it into the practice as well. So I have a mom and she is in late stages of Alzheimer's disease. When my mom first started to show signs that something was different, something was wrong,

[00:04:06] like many of our clients, I did what I could to make it okay for her. I wanted to stay her daughter. I didn't understand at the time that that's actually what I was trying to preserve. And, you know, what started to happen very quickly into it because my mom had such difficulty, you know, with the changes that were happening for her.

[00:04:35] She knew something was different. And that is a common theme with all the families that we take care of. The person that has the disease knows something is different and doesn't know how to explain something. And is doing everything they can to compensate the changes. Right. And then the family around them, because, you know, your mom, your dad, your husband, your wife, they look the same. Right. Nothing about them physically really has changed.

[00:05:06] Everything about them has changed. And so... Yeah, I think that's a very accurate observation. That's been mine too. Yeah. So, you know, then, you know, you're trying to vie for... I don't want to say, you're trying to vie for a position. How do you support... But you're not even necessarily thinking, registering this in your mind. You're just, you know, you're just holding on. Seems like... Seems like the relationship that you've been having straight along. Right.

[00:05:36] So, how it starts to affect is that the roles start to change. Right. You have, you know, you have one family member that says, you know how mom... You know how mom is. She doesn't, you know, she's got a lot on her mind. You know, she's, you know, she's just not, you know, she's just not remembering the way she did. It's not a big deal. It's age-related. You know, whatever are the comments. Okay. Or you are the spouse and you're used to having a shared relationship of shared responsibilities.

[00:06:05] Okay. And now you're depending on that other... They're not coming through in the way they did. Right. And so you are doing your best to still acknowledge that person as they are. But yet, you know that something is dramatically changing. So, initially in, you know, when this is all starting to unfold, I don't think anybody knows what they're doing, to be honest. Okay. I think that everybody's just sort of scrambling. I mean, that's how I felt. Okay.

[00:06:33] When things were changing with my mom, I was scrambling to, you know, like I said, to make it okay for her, to make it okay for my dad, to, you know, to be in relationship with her. And then all of a sudden, at a certain point, you start to find yourself like taking over. Right. And because you sort of have to. And so now you're in this dance where you're taking over, the relationship's changing.

[00:07:01] It's becoming more uncomfortable, particularly as the child, right? Because the relationship is really based on a mom, her children, taking care of their mom. And there's an expression, one mother can take care of 12 children and 12 children cannot take care of one other. And this is a pretty famous expression. Okay. Constantly goes on for quite a time.

[00:07:28] The impact is profound because you don't even realize that while these changes are happening, you're also grieving. You don't even recognize necessarily that you are grieving. So you're sort of stuck in this time warp, if you will, of what was to what is, and just trying to figure out where to go with all that until you get some sea legs.

[00:07:51] And it is, it's really, it's really, I mean the best word to say is overwhelming. So it's anticipatory, it's dealing in grief that you're experiencing, that you don't realize you're experiencing. It's anticipatory grief, there's ongoing responsibility that everybody's trying to figure out as things are going along. It's, it's, I find to be one of the most difficult diseases that we deal with.

[00:08:18] I couldn't agree with you more. Sure. um, so based on your experience, both professionally and personally, what would you say adult children should focus on in the first months after receiving, um, the Alzheimer's or dementia diagnosis?

[00:08:48] So it's an interesting question. Some of this comes down to, um, I'm going to take it sort of like out of order for a minute. When someone is diagnosed, regardless of the diagnosis, okay, what does, what is the financial wherewithal of a family to be able to take care of that person? And that sort of, that sort of alters the, the, um, answer.

[00:09:18] Meaning that when I see the work that we do, the families that do the best are the families that bring in, that bring in a care team that are wise enough to understand that this is so much bigger than they are. Okay. And that doing this on their own is so daunting. And so having a team together that can help you, help you navigate as things progress. Okay.

[00:09:48] That's, that's what I think is the most important thing to do. So you're saying that the people, the families who thrive the most during this long, long journey through the world of dementia do best when they, um, get the family financial affairs in order. Correct. Or the wild affairs in order as well.

[00:10:17] So they, and they, they, they, so their financial needs in order. Okay. They understand, they have their, their legal affairs in order. So what do I mean by that? When you put together an estate plan, right? Have you considered, uh, you know, is your estate plan current? Okay. So we've had clients come to us by example. Okay. And the husband and wife have named each other as their power of attorney.

[00:10:43] They don't even have their, they don't even have any of their children on their documents. Okay. But now this husband has been diagnosed without Thomas disease. And so there would be no way to help the wife. Okay. If anything were to happen to her or that the child stepping in and actually having to go through a court proceeding, known as guardianship to be able to help her.

[00:11:07] So have the documents been brought current so that you have an actionable plan that can help you right in your time of need. Okay. Does the family understand the financial wherewithal involved? Yeah. Now, many of our clients are wealthy.

[00:11:26] And so a lot of their affairs have been put in order, but even, even with that, you still have where, as I said, they may not, they, they thought they were, you know, put it, they had put their documents together in a way that made sense. But does the document have within it all that you want to say to your family about taking care of you? So have you put in the details about the way you actually want to be taken care of? Yes. Okay.

[00:11:56] If, and when the time happens and now you're here as a diagnosis, the diagnosis has occurred, right? And so you don't want, if you can help it, you don't want to leave for assumption that your child who means the best, going to care for you in the way that you need to be taken care of. You, you want to be taken care of. And the other piece is that most of our clients are not medically trained.

[00:12:23] They're not, they're not trained or specializing in any kind of dementia care. And so the families that do really well are the families that look to create a care team beyond the legal and the financial. They look to bring in somebody who is an advocate, who can anticipate the what ifs. So they're not having to be in constant reaction to the changes.

[00:12:50] The care, the care manager or care advocate has been trained to know what potentially could happen, even though for any two people, this disease can look sort of different. But then there are certain things that, you know, happen in common, regardless of who it is. And so those, those families do really well because they have put together a whole team for themselves. So it's not the physician doing one piece and the physical therapist doing another piece.

[00:13:18] It's, it's, it's, it's, it's one person creating the collective. And so that everybody has their piece in it. But there's one, there's one mastermind, if you will, that's helping the family to navigate. Does that make sense? It does, but I do want to stress to everybody because this is a topic that comes up and a lot of people aren't aware of it. There are two different legal designations.

[00:13:47] One is a power of attorney and they are the agent for the person diagnosed. For financial reasons only, there's a separate medical power of attorney. And a lot of people don't make that distinction. So I just want to mention that since we're talking about it, because you need both. And it's also recommended that you have a backup for both the POA and the medical POA,

[00:14:16] just in case something that the original designees aren't available for like an emergency room visit or something like that. Do you agree with that? Is that what you have found, Jill? So that was the second piece of what I was going to share. You are completely correct. You need, that's what I was saying to you before. When a husband and wife only select each other and they have no backup. And then a family has no way to help either their mom or their dad.

[00:14:46] So it's the same thing on the medical side that is 100% correct. But keep in mind that the rules do vary from state to state until it's true in my state, which is California. But they do vary a little bit. But there's a lot of similarities.

[00:15:03] Make sure that you check in your specific state what the document that is required to designate a medical decision maker and a financial decision maker. Okay, we're going to stop right there because we have to go to a really quick break. But don't go anywhere because we're going to be right back with Jill. And we're going to pick up this conversation right where we're leaving off.

[00:15:33] So don't go away. Be right back. This podcast is brought to you by Minding Dementia LLC. We encourage you to check out their website for resources, checklists, extra content, and more. Visit MindingDementia.com today. Okay, everybody. We are back and we're talking with Jill Poser.

[00:15:51] We're having a really dynamic conversation about just generalities that pertain to families once an Alzheimer's diagnosis or related dementia diagnosis is made within the family structure. And these are things that you need to be aware of immediately.

[00:16:13] They are so important to address while hopefully your loved one is still of what is considered to be of sound mind. So our last topic actually is a really good lead-in to the next one.

[00:16:33] Jill, in your experience, what are the most common mistakes that families make when trying to navigate care on their own and not create what you've recommended? And that is to put a solid care team together for their loved one.

[00:16:56] I would say the biggest mistake is not asking for help and thinking that you've got it as a family and you can take care of this on your own. The second mistake is that families will wait until there's a crisis. Absolutely.

[00:17:20] And the part that is complicated about that is that you never know when the crisis is going to happen. Right? You're constantly in flux once the disease has been diagnosed because you never know from day to day what can happen.

[00:17:43] When someone's been diagnosed and the next thing you know they wind up in the hospital and they've had a fall and you can't explain why. You can't explain why someone falls, why they deteriorate so rapidly. And so I would say that's number one and number two. The third thing I would say is that there's a lot of focus immediately on the disease as opposed to the individual. Yeah.

[00:18:13] Okay, so who is the individual in all of this and what is this individual still capable to do? So that as opposed to what they can't do, looking at, like I said, looking at the person, not just the disease.

[00:18:37] And families typically often will put together one service at a time. And so, you know, let's just say that you live long distance because many of our clients, the children live, you know, out of state. Okay? And so, you know, they'll bring in, let's say, like four hours of private duty home care a day, six hours of private duty home care a day.

[00:19:05] And that's all that they bring in and they think that that's enough. And maybe, maybe that is enough for a short period of time. But, okay, who is it coming back to them as to what's actually happening? Are they still depending on their parent to be telling them what's happening for themselves once this diagnosis has taken place?

[00:19:31] So, the piecemealing of services is very difficult and leaves for a lot of trial and tribulation and anxiety for the family. A lot. This is what Life Care Concierge has kind of been created to help families with is just to help guide them and put all the pieces together. And is that what I'm hearing? Yes.

[00:20:00] It's like with anything else. If you, you know, you can't know what you don't know. And when someone is diagnosed with something as complex as this, right, there are people who don't understand the distinction between the fact that this is neurological versus a mental health issue. Right? And so, and wrapping your head around the fact that someone just can't function in the way that they did.

[00:20:29] Right? And you, you don't really have background in any of this. And I keep going back to this statement. And it's daunting. You, you, how do you help that person when you have no idea, right, in, in, in any, in any way what, how to do that? Right. And things sometimes are just treading along, you know, very, very gently. Mom is, quote, gently confused. And then all of a sudden, out of the clear blue, it just takes a nosedive.

[00:20:59] And you just weren't prepared for the nosedive. So, it's not that bringing in, you know, a care advocate means that this person swoops in, okay, and takes over the, you know, takes over the family's life. You, you gently guide, okay, to what the needs are of that, of that individual.

[00:21:19] And it may be that it's, it's minimal involvement, but it's someone for the family to go to, right, as they're starting to see things change. So, they're not, as I said, doing this by themselves and having to, having to scratch. Those are the, the, the biggest issues we see. That they just can't understand how quickly circumstances change.

[00:21:48] They can't understand how dramatically, how dramatically things change once a crisis has happened. It's, it's, this is what we see all the time. And this is a good, that's a good segue into my last question because we are going to be running out of time very shortly. What would you recommend that are some practical ways for family members and care partners

[00:22:16] to prepare for future care needs before the crisis? And I say that with emphasis because this is really probably the most common thing that we see, those of us who work in the world of dementia. The crisis is the tipping point of the rest of the journey.

[00:22:39] So, before that crisis occurs, what are your recommendations for practical ways to prepare for future care? And we will, and we'll, we'll wrap the conversation up with, with that. So, two pieces. Okay, there's the legal and the financial, which is, as I said in the beginning, you can only take care of yourself or your loved one to as much as you can afford.

[00:23:08] So, understanding the financial wherewithal is critical to outcome. So, whether it's working with your advisor or working with your attorney, you have to have an understanding of that. You have to have your legal documents, your estate planning documents in order. I highly recommend so that when you need family members to step in to help you,

[00:23:35] they have the legal authority, whether it's for healthcare decisions or it is for financial decisions, they have authority to help you. Particularly, okay, if, if there isn't significant financial wherewithal and decisions have to be made about possibly Medicaid planning or VA planning, and if someone does not have the legal authority to step in as a power of attorney,

[00:24:02] you can't readily make those long-term care decisions on someone's behalf. And so, it becomes way more complicated. So, I think those two are hugely significant. And having a team together, meaning, do you have a primary care physician? If you can afford to have a concierge primary care physician, I highly recommend having that. And that's an important place to start.

[00:24:30] Do your children, are your children aware, okay, of your affairs? Is your spouse aware? In some, with some of our clients, depending on the generation, the husband has taken the lead to all financial matters. And the wife doesn't really have a clear understanding of where she is financially. And so, are you aware about, about your, about your, you know, your own life?

[00:24:57] We can get into things like home safety and, and, you know, having a place to live to the future. But, so, and some are very wise to do that. Some will, you know, will, will go into a community where they now are, they now have a one, you know, a one-story home, okay, where they go into a condo and downsize so that they,

[00:25:25] they can anticipate that things may change. We have clients now that have, one, one of the spouses has recently been diagnosed with, with a disease that will be degenerative. And so, they're selling there. We have this with two families right now. They're selling there, you know, they're selling, one selling a home, one selling a condo, and they're moving into a senior living community. Jill, unfortunately, we are out of time. So, we're going to have to wrap this up.

[00:25:53] But before we go, could you quickly tell everybody how they can contact you? Sure. We have a website, www.lifecareconcierge-sfl.com. They can reach us at our office, 561-817-2490. They're welcome to reach out to me by email, Jill at lifecareconcierge-sfl.com.

[00:26:22] So, we're easily accessible. Great. Well, thanks again for being here. It's been a pleasure. We had a great conversation. I think all of your recommendations and advice is not just sound, but very valuable. So, I hope this has been really helpful for the people listening to this episode of The Truth, Lies, and Alzheimer's Show. I'm Lisa Skinner, your host.

[00:26:49] And as always, I will be back next week with another new episode. So, for now, have a great rest of your week. Be happy. Be safe. And we'll see you back here next week. Bye-bye for now. Thank you for listening to Truth, Lies, and Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime,

[00:27:18] but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lies's Minding Dementia Support Group. We're a community of like-minded caregivers, and we're here to help.