Episode Transcript
Speaker 0 00:00:00 You know, I think the thing that is being missed here by society is if you lengthen the period in mid, in the early stage of the disease, you're probably shortening the period in the last stage of the disease, the end stage, because the disease has not been shown to lengthen life, the medications. So that's where most all the expense comes.
Speaker 2 00:00:30 As our parents grow older, it can be difficult to guide them through their golden years, while still respecting their autonomy and fitting it into our already complex lives. Welcome to the Parent Projects podcast, where our guest chair, practical wisdom on tackling the issues that impact adult children of aging parents. I'm Tony Seber, thanks for joining us today.
Speaker 0 00:00:55 Hello. Welcome. In this week, everybody, if, if Alzheimer, Alzheimer's is, uh, and even dementia and other forms are, are something that's impacting your family, uh, and it's something that that's left you leaving just a little bit isolated, uh, maybe something that you, you're, you're working your way through the landmines from day to day. You're going to wanna listen to this week's episode. Not only are Jim and Jerry Taylor gonna sit down with us and share very, an, an intimate story of what this has looked like for them. They're gonna do so from an incredibly well educated perspective, um, as they've been facing this since about 2012. This is a great opportunity for us to understand the impacts on our finances, how one person challenged with this disease, uh, may in fact be, uh, be impacting four or five other people that sit around them. And we're gonna come to some conclusions in what you can do about it to help deal with the impacts, specifically maybe around debt or finance of Alzheimer's for you and your family.
Speaker 0 00:01:53 Stay tuned. The Parent Projects podcast begins now, boy, it is my distinct pleasure today to get an opportunity to introduce you to a couple people who I'm confident, uh, are gonna be lifelong friends. Uh, Jim and Jerry Taylor. Look, the, the cred, they, they both have really wonderful credentials that sit in front of them. And I'm gonna break a couple of these down, right? You're talking about a career nurse, a master's degree in public health, an executive vice president at Beth Abraham Health, um, Abraham Health Services executive Vice President of the Jewish Guild for the Blind, an entire life, um, dedicated into helping those in, in and around her. You've got, uh, another well accomplished IBM m Finance executive University, uh, mba, university of Chicago, b a, and somebody who's just has time and time again since 2012 of watching a family member struggle and, and worked through their way through what this looked like for them in a disease.
Speaker 0 00:02:53 Turn that into motivating action. Since 2020, a Jim, who will introduce you to has been, it's a laundry list of awards that have really set him aside as somebody who not only sees it and recognizes it, but is motivated to do something to help you. And I understand what's going on. Jim and Jerry Taylor, thanks for joining us today on the Parent Projects podcast. Thank you, Tony. It's terrific for us to have the opportunity to be here. We're grateful for that. Well, you, you are kicking off our month. It is Alzheimer's Awareness Month, everyone. So if you, if you hadn't been tracking that, and there are awareness months for this and awareness months for that, and everything that sits around this is, this is one of my favorites. Uh, and this is one of my favorites because this is truly one of those quiet things that as it comes across, I watch families hunker down and almost hide in some level.
Speaker 0 00:03:46 Uh, and so this, but this gives us an opportunity to celebrate it in a way. Maybe take us out a little guilt and fear a little easier, bring it into a little more love and laughter, share some stories around and make it real, uh, and remind people and they're not alone. Right. Uh, hey, so talk to, give us a little background if you would please, um, talk to us a a little bit about you and Jerry, Jim and, and, uh, and your guys' experience. Well, Tony, uh, thank you for having us tonight, and we welcome the opportunity to tell our story. It used to be that Jerry and I shared the microphone 50 50, um, but over the last couple of years during Covid, she began to experience communication challenges and word fine. So now I do most of the talking, which is unfortunate because she is such an eloquent voice for what it's like to live with this disease.
Speaker 0 00:04:40 But Jerry has a family history of Alzheimer's, and both her mother and father gave her a gene that increased the, uh, odds that she would develop Alzheimer's. And, uh, a Alzheimer's is very often a familial disease, and it strikes multiple cousins and sisters and brothers. And it's something that Jerry's brother and sister have not developed, but she developed at si in her mid, mid to late sixties. She knew it was coming, uh, bec she was experiencing different symptoms. She began to realize this was familiar to her. And of course she had her healthcare background. And, um, so we were diagnosed. She was diagnosed, uh, after she had an incident where she looked into the mirror Tony and didn't recognize herself. So that was a pretty startling, uh, episode. And we went to a neurologist after that. And, uh, that began our journey. Now is that, uh, 2012?
Speaker 0 00:05:43 Do I remember? Is it, is it, wow, it's a little over a decade ago. That's right. To walk through that. Um, you know, as, as you started in that progression, was it, has it been kind of a, a real do, do you mind if I ask, has it been a real, has it been a constant kind of decline off of that? Or were the, was there a period of time where it just really kind of was fixed for you guys? Or how, how does that play out when, so, so many of our audience might be at the very, very front end and just, and, and knowing everybody could be very different, but yeah. What, what did that story look like? It's a very good question, and it actually brings in several aspects that we like to talk about. Um, every person in the rate of progression is unique, so it's hard to say for the disease that this is the line or these are the bumps.
Speaker 0 00:06:31 Uh, we, very soon after diagnosis, we're able to get in a, what ultimately turned out to be a successful clinical trial for Alzheimer's disease medications. It's the drug that was approved by the F D A two years ago called Aducanumab Now, uh, adu hem. And we believe it's significantly spo Jerry's early decline with the disease. For many years, she was, uh, totally on top of our travel, uh, schedules and, uh, making presentations and answering questions and interviews. And so it really progressed very slowly, uh, when, uh, the drug, she was off the drug for about a year when they stopped, uh, administering it. And I noticed during that time, her communications problems began to surface. And since that time, she's kind of gradually, uh, gone downhill, uh, with communication particularly, but also with short term memory and remembering where things are around the house and, and gradually, uh, handing some things over to me that she had done here to, for, I, I, uh, I could definitely appreciate kind of the differences and where, where that is, and I appreciate No, I really appreciate knowing there's a decade plus, you know, happiness.
Speaker 0 00:07:53 Like I, I look at you guys next to each other and I see Joy <laugh> and I, you know, Tony, we often hear that this is such a terrible, horrible disease, and I kind of cringe or we cringe every time we hear that because it's a very difficult late stage disease. But most people after their diagnosis don't realize that they, they can have 10 plus wonderful, wonderful years of being totally productive, uh, really, uh, bring joy to themselves and other people, and being passionate about living, being just forgetful. And, uh, that's what people don't realize, uh, necessarily. And I think that stigma that had been attached with Alzheimer's and other dimensions is beginning to subside. And that's one of the reasons we've tried to be visible and to represent the alternative well in a wonderful job of that. Uh, you, you guys are doing, uh, there, there are a, along with, um, probably that stigma of the past, and hopefully that's continuing to decrease of, um, of just from day one or just the, the, um, the worst ends of what the disease could be.
Speaker 0 00:09:07 I think the fear of that is what strikes people and can lead them to, to, to not make some of the most productive or proactive decisions that they can make, uh, to, to help work through the process and enjoy the moments that they have. It's easier to hide when you get into that fear. And so, I, I'm hopeful that, I'm hopeful today that a family that might be out there has that ability to kind of step into this, lean into this and see something proactive that they can do about it, uh, to, to move, um, move everybody forward. You know, I, that's, that's what brings us great joy is when we can, we, we try to do a fair amount of work individually with people, and that, you know, that there's such a, a reward for us in being able to do that. Um, so we, we would be happy if we could be part of that with you.
Speaker 0 00:09:54 Awesome. Awesome. So, you know, I, I look at, uh, I think there's the, the most recent statistics I've seen, there's about 6 million or so people that, that are working through. Is that about the numbers? You're, you guys over 6,000,016 to 18 million unpaid caregivers, right? Which, which is huge. I saw a number, um, of that in some, um, some senate, uh, some senate testimony that was working that, that accounted for over 270 billion of unpaid kind of caregiver support and wage. And, and, and that fi I think when you add that perspective of it, or the perspective of, uh, what I've heard some folks from your board with your guys' organization talk about that, you know, every one person that has this may impact four or five other family members as a family disease, that really brings the roost. The second thing on top of, of the fear, which is man, the real financial aspects that come with this disease.
Speaker 0 00:10:57 It's, it's very significant, Tony, and it's very wise that you bring that up. Uh, you know, we, we really believe that information is an antidote to fear, and that people really are sometimes afraid to find out because they don't want to know that they really have the disease. But getting past that fear and learning what you can do to take care of yourself is very, very important. This is not, uh, a disease that often gets diagnosed early. And we, one of the real opportunities is to help people realize that an earlier diagnosis is beneficial very much for themselves, gives them an opportunity to get in clinical trials like Jerry, when it could be most helpful. Yeah. And that's a real challenge. Less than 1% of people in the US with Alzheimer's today participate in a clinical trial and for many different reasons. And I really believe that that's slowing our opportunity to find a cure and, uh, other treatments for the disease.
Speaker 0 00:11:58 But most of the cost of Alzheimer's is born by individuals and families because the government does not pay for many treat. We haven't had medications that, that slow or cure the disease. And so, unlike something heart disease or cancer, where, uh, long-term care or some or care is provided, and medications and surgery are provided, most all of the huge cost of Alzheimer's is born by individuals. Yeah. And well, and you, the adu hem, the, the, one of the particular, um, medications you're talking off of there, that's what, almost a $30,000 a year or so for family, is that right? It is. We have a newer drug that was just approved by the F D A in January called Lecan. Uh, now the name is Libe. And I, uh, switched to it because it's a much less controversial approval than the first drug, which is Aducanumab.
Speaker 0 00:13:00 But Libi and Aducanumab both had Medicare say that they would not cover the drug. They both have a price tag, which, uh, probably only the upper 10% of people could afford, uh, between 25 and $30,000 a year. These are drugs that are administered intravenously. So it's getting a treatment, a trans, uh, infusion, uh, twice a month or once a month depending on which drug. And, uh, so there's a great deal involved, but most people cannot begin to, to pay for it. The the curious thing, Tony, is that Medicare never previously has declined to cover an FDA approved line of medication, a class of medicines. Well, and, and, and that will be an interesting, and this is probably the time at which, which, uh, you know, I've got a bug in my ear off of that, making sure of disclaimers and safe harbor stuff that you throw off for people.
Speaker 0 00:13:56 But, you know, the, the, the reason we present this, and we really wanna have this conversation is you, you can't even get to those payer model problems if you can't set the, if you can't set the battlefield, if you will, as military guy, right, to understand what the lay of the land is, that's and what's in front of us. What are the types of, what are we going after? Are we looking after the plaques? Are we looking after the connection between the heart to the, to the brain? Are we looking after? What are, there's so many different realms that they're looking to research and work through. And, and we really, it's about creating that awareness and then making sure, if you're watching this, by all means, these are all conversations you need to be having with your physicians and you, you need to talk through them and have, have somebody walk through what might be a fit or wouldn't be a fit in those conversations.
Speaker 0 00:14:39 We, we really wanna open this up for an awareness to understand that is a key thing that has to happen at scale to begin continuing to put pressure in the right ways, we think on, on, on how our payer systems work. Um, and I think you bring up a a great point when it comes down specifically with, with our entitlement systems, Medicare, Medicaid, uh, and those systems, because they tend to lead, I think, the way that they handle with their ICD 10 codes and, and, uh, and billing or, or what they do and don't coverage and how that works. They tend to lead where the insurance companies are, are going to go as well. So, um, so tell us a little bit about voices of Alzheimer's and what you guys are doing to try to wear, you know, that awareness to understand just the prohibitive nature of cost and some help that, that you guys see that the government can assist here in the United States.
Speaker 0 00:15:27 On, so Jerry and I were part of a team that founded a new organization last September, uh, on World Alzheimer's Day actually. And it's called Voices of Alzheimer's. And the organization was founded, uh, to really amplify the voices of the stories of individuals living with their, with the disease and their care partners and their families, because FDA had already made their initial decision not to cover life altering breakthrough medications for Alzheimer's. And we believe it's primarily because of cost. They simply, after the pandemic cannot afford it, and no other drug is being penalized or rationing care like Alzheimer's drugs. So in order to form an association and recruit people living with the disease and their their families, we started voices of Alzheimer's. Half of the board is outstanding individuals living with Alzheimer's, and the other half is the board is what I call the lions, uh, of advocacy for about the last 10 years in the DC area.
Speaker 0 00:16:37 So we're really blessed to have a combination, but we have been fighting Tony Tooth and nail, uh, along with the core of other, um, Alzheimer's and advocacy organizations to reverse this, uh, unconscionable decision by f fda, by C M s, excuse me, not to reimburse this drug. So it really, and this drug is primarily to cover people in the early stage of the disease. So Jerry is now and more in the mid stage and would not now be eligible, but we feel she got the full benefit of aju hem, uh, because of the clinical trial that she was in. So after diagnosis, and it's one of the reasons to be early diagnosed, you can, with the confirmation that you have the telltale physical sign, which is called amyloid plaque on your brain, which can be revealed through a PET scan, you would then, then, if you have no disqualifying conditions and there are a few, uh, be able to receive the drug, however, you would have to pay $26,000 a year for the drug itself plus the PET scans, because that's not covered by, uh, cms, by Medicare either.
Speaker 0 00:17:45 Yeah. So all other PET scans are covered for all other diseases. Tony, interestingly enough, for 10 years we've had PET scans as the prime premier, uh, uh, procedure to diagnose Alzheimer's and Medicare continues not to provide coverage. Yeah, well, I, I've, I've gotta imagine on that payer front and the pressure that comes through. One, one thing that, that you could just get involved. Look, if you're, if you're a family, if you watching our show, this is a great one to get involved and letting your elected officials know, um, the impact and what the story is, the personal face and the story of you and your family in particular. We, we would love, we would love to have any of your viewers who, uh, would, would like to join the cause, uh, sign on to our website, voices of ad.com and become members. And as soon as they sign on, we kind of, I think of it as an advocates toolkit.
Speaker 0 00:18:44 If they want to, uh, write to their congressperson, if they wanna write to the organ Medicare organization, which is called C M s, they can do that. And we assist with all that information. We also, I, in Florida a couple of, uh, weeks ago, Tony, we just came back there after being snowbirds for the winter. We, uh, let a die in. So it wasn't just a sit-in, but to reemphasize the life altering impact of these, the denial to provide these medications to people who are entitled to receive them according to the fda, we have had a die-in where people actually pantomime their death every 60 seconds, which is how frequently someone's diagnosed in this country with Alzheimer's. And there's instructions if somebody wants to do their own die-in how to, how to do that. So there's a great deal of information on our website and also copies of our quarterly webinars about different that you, you know, so giving that, um, that, that democratic way to give voice, uh, to this disease, which is really one of its first kind of first victims from the family standpoint that I do see it grab after as it push everybody, kind of a little bit of fear and shame gets everybody to be quiet and back away.
Speaker 0 00:20:01 I love that you're giving some, some tools and ways that people can step out of that, uh, and begin sharing those stories and giving some voice. Uh, Jim, Jerry, what, uh, you know, what I, what I'd actually love to do is highlight I one, there's a, one of the particular interviews that you guys have given previously had a great conversation with Jerry when, uh, when you, when Jerry was, was, was doing a lot more talking in, in the interviews. And, and Jerry, you did a brilliant job of explaining life with this, I thought, in a really beautiful side. Would it, would it be okay if I brought that up and, and we have listened to a couple minutes of that? Sure. Okay. I, and in fact, we, we normally take a, a, a a break kind of at this point in time into the show, and instead of that, we're gonna do this just to kind of get a moment I'm gonna add into our stream, um, as we throw a shout out up here. Um, I do believe this was on, uh, this is the, um, ad foundation.org, that's I d I r, excuse me, A d i r a foundation.org off of the story. And, uh, and I just really enjoyed it. So I've got you queued up here, and we're gonna let him ask a pretty neat question and work through just to, to hear your guys' story a little bit more.
Speaker 0 00:21:18 Have you ever felt that people treat you differently because of the diagnosis?
Speaker 3 00:21:23 Yes. People who aren't around me so much, they want to hold my elbow. Um, they wanna point out things as if I can't see well, or I might topple over and it's difficult because their intention is good, but when they always ask me to sit down, well, why <laugh>? You know, I think people expect that we're going to go off the rails, that we're going to do silly or stupid things, but, you know, we're just regular people with Alzheimer's.
Speaker 0 00:22:02 I remember you explained it. You're not thinking about what you're gonna say next as so often we do, because you don't have that capacity and you don't have overhanging thoughts about what you did yesterday, cuz you don't remember. So you are really present and in the moment, and you made the point that however you are, you're perfectly okay. It's another way of being. It's different from how a healthy person might be, but that doesn't mean it's not Okay.
Speaker 3 00:22:32 Well said <laugh>. Thank you.
Speaker 0 00:22:36 I I just adored that interaction. <laugh>, thank you for playing that, Tony. Yeah, good, good man. A great husband. I hope behalf the husband you are in that and how you advocate and, uh, and give that voice. You know, this is one of, one of those things that we talk a lot with families about are, um, the importance of, to towards the end of all life, whether, whether Alzheimer's or what you're faced with or anything else, generally, your last decisions in life, uh, aren't made by you, made by what you prep up or what you prepare for and what you set up. I mean, whether it be where your remains are taken, like literally the last things you, you know, I I'm not gonna have much to do with that outside of what I prepped for. And hopefully, hopefully, uh, I chose the right kid to execute what that's going to be <laugh>.
Speaker 0 00:23:27 But, um, what, what is that? You know, can I ask what, how do you guys prepare for that over, over 10 years? And when you're working off of that, how did, how did that change how you guys prepared in your life, uh, to communicate decisions about as you got older or prepped? Is that that's something that gave you you a, a, a different feel or is it, or what, what'd you guys think about there? I I think most people who do plan ahead, some people just die without a will or any planning, uh, and leave it to their children. And, uh, that's what we wanted to avoid, of course. And, uh, I'm sure most of your audience watching, uh, would like to not have that situation also. But I would say it accelerated what we did, uh, because while Jerry was fully cogent, or mostly fully cogent, uh, but forgetful, we wanted to talk through all those, uh, decisions that we knew would have to be made.
Speaker 0 00:24:26 And that's one of the reasons we encourage people to seek an early diagnosis. If they're beginning to suspect that they may have some cognitive issues, go and find out, uh, be tested because the testing can reveal whether or not it's just normal aging. As we all, many, most majority of seniors, uh, my age, have aging, uh, cognitive issues I certainly do as well. Uh, so when we discovered that, uh, Jerry had the diagnosis, we talked more seriously. We revised our wheel, we talked more seriously about medical care and who would have the power of attorney, who would have the health proxy and all those things we worked out and which ch again, which children would be the most appropriate to. Uh, we have a daughter who's a nurse, so, uh, that came into play and a son who's an attorney. So, you know, those kind of, uh, assisted the decision making about who would've, what, what responsibility.
Speaker 0 00:25:25 But, but when that's done, there's so much comfort in knowing, uh, that you've done it well. And we've had reason just a couple of days ago to talk through it again and, and feel that yes, we had done it. Well, there's no reason to at this point need to revisit it, but that, that can be done gives a great deal of comfort, not just to us, but then we have talked to all our children about that. Uh, and so we know, they all know. So, I mean, one thing parents wanna mitigate as much as possible is any sibling strife after death or after, uh, you know, a person is not able to take care of themself. So I think everything that, that like that, that can be done is being done not just for ourselves, but very much for our progeny. Yeah. Also, Jerry ha, when progeny comes up, since Jerry knows that she has these, uh, two genes that increases actually 12 fold her likelihood of developing Alzheimer's, her son also has, we have separate children as a second marriage for both of us.
Speaker 0 00:26:30 Jerry has a son, and we know that her son carries the disease, carries the gene, and therefore is three times more likely to develop the, uh, to develop Alzheimer's. So it, it's very much, uh, our children are very much involved and very much in our thoughts and consideration. C can I tell you, were there to really reach back and, and now it's been 10 years since you guys had the original diagnosis. So, you know, I'm, I'm gonna challenge your memory because it's Alzheimer awareness. Of course we should. Right. Um, <laugh>. So naturally from that, what is there, how, how do you, how do you recall even those, those conversations or, or can you think back of those conversations where you introduced her or talked with your kids about it, or, um, and you approached those conversations there, is there something that can be learned from what went well?
Speaker 0 00:27:23 What didn't go well off of those without, um, jumping too much of the detail? We, we had a very interesting first year I would say. Uh, Jerry was totally, uh, prepared for the diagnosis. She knew was coming pretty much from symptoms and from her family history and from her health background. I had not for a moment, entertained the possibility that my brilliant wife might have any cognitive issues. So for me, it was a devastating day to get that diagnosis. And I was really depressed and withdrawn and angry for a couple weeks, really experienced a lot of the emotions with that come with death. And, uh, you know, I came back and, uh, after that time, fortunately, Jerry was very patient and self-sufficient at that time. And we decided that, you know, we couldn't live in the closet. We really had to be, uh, forthright and, uh, share our disease and figure out how we could make lemonade out of this.
Speaker 0 00:28:24 But it took us a while emotionally to be able to share it. I think we both had, I particularly had to go through the, the, the months of coming to grips. At first, I couldn't even tell anybody at first Tony, without breaking down because, you know, first it's so painful yourself. And secondly, you don't wanna share that pain with anybody you love. But when we were both ready and, uh, I think this was about 10 months after the diagnosis and that being ready and only, you know, whether or not you are or thank you are is very individual, but we both felt we were ready, Jerry sooner than I, but then we had, uh, an opportunity when all the kids were coming to visit us over the 4th of July, and we took that opportunity to meet with each couple separately our, our children and significant other, our spouse, and tell them about the diagnosis.
Speaker 0 00:29:20 And Jerry as a health professional suggested that we tell them what they need to know, but not offer additional information unless they ask. Huh. Uh, those sessions went extremely well. We had a four of them and, uh, their kids were so tremendously supportive and, uh, my kids were surprised. Jerry's son was not so surprised because he talks frequently with her on the phone, and I think he'd begun to notice a few lapses in the conversation that he knew were, were not normal. So he was not as surprised and in somewhat relieved to know that there was a diagnosis. But I think we have felt in retrospect that that had worked well for us. And of course, everybody's children are their own individuals, but, uh, it was a good approach for us. Yeah. That, that, that is a, uh, that sounds really great. And what a blessing that she had that background and experience to understand, to have un approach.
Speaker 0 00:30:24 Right? I mean, in general, if you think about the wherewithal to put together un approach for those difficult conversations, um, that that truly is a blessing, you know, for, uh, family members that are coming into this, if they're, they're starting to, um, you're picking up signs or they're noticing something sits out there, uh, any, anything that you can think of that that helps them, um, or that you may have seen over the years that could help them identify and approach this software? There? There's so many different ways that this manifests. Jerry saw it and, and she's so smart that she hit a, you know, I had no idea. That's why I was so shocked by the diagnosis, because it's, it's, uh, she managed it well. But, uh, for other people, sometimes it's the family who notices that mom or dad is beginning to show some symptoms.
Speaker 0 00:31:17 And sometimes when they mention it, the parent is very, uh, defensive. Uh, doesn't wanna be, uh, go to neurologist or even the gp, uh, A P C P, uh, family physician, uh, physician. But one of the things we have found that might work in that case is that when you go in for your annual physical, that you have your doctor, that the child, the adult child, uh, call ahead to the physician and tell the physician that they're wondering about cognitive challenges, and then have the physician bring it up with the parent and, uh, even ask if they'd be willing to take a, a quick cognitive evaluation or a more extensive cognitive evaluation. We found that that very same thing works with taking the keys away. A lot of children don't wanna get in the, this is a very difficult and emotional thing, right. And children don't wanna get, cuz it really brings, you know, can bring a very, uh, difficult situation.
Speaker 0 00:32:18 And sometimes it works better if you call ahead before the annual visit to have the physician who's an authority for most all of us, uh, raise the question of, well, how's your driving? And, uh, raise that issue. It it's much easier on the familial, uh, wellbeing. Yeah. Can, can I a along that, that, um, maybe pathway for you guys, did you have a similar doctors that maybe have, have been through most of this over the 12 years? Or, or does that, does that kind of change and plan or escalate as you as, uh, as, as you work your way, as you, as you get older? Or, or is it, how, how does that question? Uh, Tony, it's just a fact that most PCPs, uh, family physicians are not well, uh, indoctrinated or educated or practiced in dementia. Okay. Uh, men, some are and are comfortable with it, but many are not.
Speaker 0 00:33:19 However, the specialists in dementia who we consider neurologist or gerontologist or iatric psychiatrists are limited in number. And so only about 20% of the people of the American, 6 million Americans with Alzheimer's actually have seen a specialist. Wow. So, uh, that, that's challenging. But we have been fortunate, and of course we haven't, as the years have gone by and by getting in a clinical trial, it helped us tremendously. It increased our connections and it immediately gave us access to a neurologist so people don't complete network. Yeah, exactly. And people to answer, answer your questions 24 7 and educate you as you progress and in, in such a familial loving way. So it's really an excellent benefit. Uh, but we did have a ge find a neurologist who has treated Jerry separately in addition to our general practitioner. And now we've even recently started talking to a gerontologist.
Speaker 0 00:34:28 Jerry had breast cancer last year. So we went through, um, that, um, episode and a number of treatments and it was very, we have found it very, very helpful to have a kind of a, uh, a medley of physicians who are helping us at this point. Well, and that, that seems to be kind of where most of us will end up at some level with payer based systems, whether it be a PPO or, or whatever. You're going to have those referrals that are gonna go out and starting to understand that becomes a big part of managing even for the family members eventually as well. Maybe as they start to step in, being able to see and track where all of those are going becomes one of the, the first push-ins, one of the easy ways to kind of help with it. Right. And it is complicated.
Speaker 0 00:35:14 You know, fortunately, I am still able, uh, we have not had to call on our children. I call it, you know, our children, children are at the ready, you know, they wanna help whenever they can, but as long as I continue to be capable, you know, it is, I, and it isn't our loving relationship that this goes very, very well. Uh, and our, uh, you know, we've always had a good marriage, Tony, but I think it's never been stronger than since we, we started on this journey. I think part of the reason is because we have worked on something bigger than ourselves outside of ourselves as you are doing with this program. And it's really something that we both care about and helping other people really, uh, enables you to be an outside yourself. And that's been very bonding and, and made our, our journey in the last 10 years extremely rewarding.
Speaker 0 00:36:06 Wow. It's, it's a, you have a, a great example to set forward for those of us that go through that, and I, I also appreciate us, but I have a, so my, my wife actually works in, um, and, and does pharmaceutical studies and works from that aspect. So we understand those trials and clinical trials and clinical research wonderful. And, and, and all of that. She's an oncology nurse by trade. And we also had to fight through an oncology, but through breast cancer over the last couple years. And, and that was affirming part, I think, in our relationship as well. As much as, I don't know that I understood the, and maybe this, this works to other families. I dunno that I understood how much that would affirm our ability, um, to understand and serve one another in a completely different, you know, in, in that different way that you typically do than when you have to, uh, yeah.
Speaker 0 00:36:54 It, it, it can relieve. Now you've got this other thing to go after at the same side. Um, yeah, at the same, Tony, I'm sorry to interrupt. No, uh, you know, Jerry just went through the breast cancer and radiation treatment and, and you know, the medication, but you know, if you have cancer, most any kind of cancer, there's alternatives, there's different drugs, there's different treatments, chemo, radiation, you know, and, and she, there's no question I asked about getting a PET scan head to toe. Of course it was covered by Medicare compared Contrast that for us, then contrasting as we sat there with a world of, you know, a, a fatal diagnosis, uh, that Jerry has of Alzheimer's, and yeah, they won't pay for the diagnostic of her PET scan for in the brain, and there's no medications that are covered by Medicare. So it's just such a discriminating world for by Medicare to us living with Alzheimer's, that it's really an unconscionable situation for us.
Speaker 0 00:37:58 And that's why we're so dedicated to this new organization to try to help raise the voice against this decision. Uh, and, and happy to, to do our part into providing just that voice so that families can understand that. So, uh, you know, we're gonna, we are gonna take one quick break off of this from the sponsor and then, uh, have an opportunity to come back and I want to circle the wagons again based on, uh, so this brilliant conversation we've had. We'll sum some stuff up and, and let everybody move through. So stay tuned right after this. We're, uh, with Jim and Jerry Taylor and talking more in the shifting landscapes of, uh, of Alzheimer's and how we treat with it. Stay tuned right after this.
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Speaker 0 00:39:39 Hey, and welcome back. You know, we are talking about the shifting landscape in this our first week of 2020 threes, Alzheimer Awareness Month. Uh, we're looking at the how, uh, we can think a little bit differently about this, breaking those normal bonds of that fear and the guilt that are associated with this disease and diagnosis of this. Shifting more to a little bit of love and laughter. I'm joined this week by Jim and Jerry Taylor, uh, who have been so gracious to share, uh, their story with, uh, with us and, and everyone, thanks again, guys, for, for joining us and your story. You've really broken down a couple of, um, of key things I don't want to talk to, um, in, in, in, in summing this up for a family member who's, who's looking to grab just some, some great nuggets and, and moving forward. Uh, one, uh, maybe I might categorize them in, in three big things.
Speaker 0 00:40:31 The first is that early detection, uh, you, you, you talk really openly about, um, how you didn't see it coming and where that was, but once that had happened, that reprieve in the processing of all of that, that there was hope, there was light at the other end of this that allowed you guys to have some great conversations, which honestly are the exact conversation the kids wanna be having too. They're just, there's a couple of really critical paths, and I want to talk a little bit and highlight, uh, with you of what I heard in that critical path, okay, that might help a family get down to that. Number two, we talked about how this is, you know, you've got 6 million Americans and, and each of them are probably impacting up to five other people that are coming in to, to, um, that are gonna be impacted as well around them, and not just maybe, honestly, not all in negative ways.
Speaker 0 00:41:24 They're gonna be impacted, right? Yeah, yeah. They're gonna, they're gonna come bumped in. And I wanna talk about, uh, we'll, we'll recap a bit real quickly against how that feels. Then there's a real payer aspect. This is where the rubber meets the road. It's a, it's a, a voices of Alzheimer's, your organization you guys have brought up in the last year that, um, that is really focusing on helping c m s, uh, which is who administers our social security and Medicare, our Medicare, excuse me, not social security, our Medicare entitlement systems. Um, and, and we know Medicaid follows that. We know that, that our insurance companies will follow that as well, but how to get them to listen to the voices and recognize, adjust how many of us are impacted here in the demand and the desire we are looking for, uh, to reduce that impact and the financial burden of that and family.
Speaker 0 00:42:12 So we can focus more on really, I'm gonna say being in the moment and enjoying that ride that we have, because I, like, I see you guys have some awesome moments, <laugh>, and, uh, and that's what we want. That's what we want to create more of. So I'm, I'm thinking we could break 'em down to that. What do you think? Fantastic. Did I get it? Let's go. Okay. Great job, <laugh>. Awesome. Awesome. Okay. So I'm sure your staff supplied those two. You no doubt. <laugh>. Yeah, <laugh>. Sorry right there. No, you know, really you, um, okay. So coming in with this, you talked in, in that pathway that Jerry, uh, you know, Jerry, you did a great job of, of you, you on, you came from a background of serving other people. You were a nurse, so she managed this, you managed this a lot, and, and that surprised Jim off the backside.
Speaker 0 00:43:06 And, and that was not something you saw coming necessarily. Right? Jim, what I heard in that is in about a 10 month period or so you went through, which sounds a lot like the grieving process Absolutely. In general to, to work through what, um, what, what is that in, in making space for that? What should adult children be thinking about knowing when that's gonna then, and that kind of hits. So maybe we can tackle this in, uh, in a little better informed manner. Okay. So, so when that, when that came down to you grieving in general, you felt, um, how did, how did that come from? Like, like was it, was it feeling like it's a grieving of death at that front side, or was, was it a think very, very much the emotions that, um, his experienced with the death? Tuber Ross was the researcher who identified the seventh emotions that come.
Speaker 0 00:44:03 But, you know, I think it is very individual. Um, the depth of it is varies, I think, by each individual. And I think each individual has to live through it themself. And I don't think there's a lot, uh, had my children been aware that we were going through this could have done to, or anybody else could have done to help me. Unless somebody cannot come out of it. And as they're in a continuing state of depression or anger, then they need professional assistance, I would say. But I don't think there's a lot that children can do to support the parent getting through that, into that acceptance. My my view professional might see it differently. Yeah. Well, well, and I think there's the key from that, right? A professional can, can see it, can understand that this is working through grief. There are people who are great at that.
Speaker 0 00:44:55 Yes, they're out there, know, know what they are, know those resources. Uh, I know and a lot of physicians, especially physicians that will work off this diagnosis, I've seen they were, and in our cases of our family, uh, each time they were able to supply us with people who could provide us some of that, um, support groups, not just for the spouse, but support groups for other downstream family members or other family members that were gonna become, might or might not become a caretaker, but just needed to understand what this was gonna look like for them. They all seem to have, those doctors seem to have a lot of resources, but what you didn't say, Tony was a support group for the person living with the disease. Yeah. So what we found, and one of the reasons we founded Voices of Alzheimer's is that there's a great deal with support for family members and for the care partners, for the spouses.
Speaker 0 00:45:45 There's not support for the person living with the disease. And why should I have a support group? <laugh> and Jerry not have a support group when she has, look what she's done in 10 years, it's incredible. But there's Wow, Jim, that is, that is mind blowing. But most of you that is support organizations don't support people living with the disease, you know, which is mind boggling to us and has been one of the things that we have fought against and tried to make the people aware of. Well, and, and I think, I mean, the alternative to that is they're just working through that and maybe even quietly, I, that's gonna Yeah, there's, there's no healthy outlet to start processing and unpacking that pro. And then how much easier is it just to fall into the fear of all of that instead of unen enjoying how you live in the moment for that?
Speaker 0 00:46:32 Wow, Tony, one of the experiences we had is that Jerry had a, uh, a therapist, a psychologist who had helped her adjust to retirement. Jerry had a very successful career and pulled herself up through that, that, uh, career. And so she wanted to be sure she transitioned smoothly and had a very, very positive relationship with a therapist. So after her diagnosis, she went to that therapist to work through adjusting to this new diagnosis. And that therapist first argued with her that the diagnosis was wrong. She couldn't possibly have Alzheimer's, nothing wrong. She's very, very bright. So after Jerry finally convinced her, the therapist said immediately to Jerry, tell no one well intentioned, but Jerry, go into the closet. Don't let anybody see, don't let anybody know, because you'll lose friends, you'll lose family members. That, that's the, our first encounter with the stigma. And it was very challenging for us to figure out how to react to that. Wow. So how did you, how did you react to that? I, I'm gonna pull on that string, like to how did you react to that? Because Jerry, like, I listened to Joy Jerry when I listened to you talk, um, like, and how did, so clearly you found something, how did that work?
Speaker 0 00:47:50 So we, Jerry left and never returned to the therapists <laugh>. And it really was, uh, a Rubicon a a an event that changed our course because it immediately began very serious conversations about how we were gonna live and whether we were gonna share the dis the diagnosis and that we were going to find a way we, we'd often talked before we retired, that would be r great to have a pub, a retirement project that we could work on together, you know, and, and enjoy that. But it really kind of hadn't materialized, but this diagnosis kind of presented itself and we, yeah, decided that we would dedicate ourselves to living with joy and passion, but trying to do all we could to help this field to make people aware of the stigma and to help actually encourage people to be in clinical trials. Wow. Wow. So let's jump over then on onto number three.
Speaker 0 00:48:53 I mean, the clinical trials and the work that you guys do, uh, one of the lions share you talked with us about is getting c m s to understand and to recognize and to, to cover cost, to, to reduce that cost burden on families similar to how they have for, for the most part, every other, uh, disease within this type of class that works this way. Um, talk to us about what are the, what are the core concepts on that, that are most helpful to keep that moving forward? What can people do? Tony, that's a great question. You know, I think the thing that is being missed here by society is if you lengthen the period in mid, in the early stage of the disease, you're probably shortening the period in the last stage of the disease, the end stage, because the disease has not been shown to lengthen life, the medications.
Speaker 0 00:49:49 So that's where most all the expense comes. It's institutionalization, it's severe falling and not being able to communicate with the physicians. So to be able to lengthen the period when one is just, uh, forgetful and shortening the period where one is really in the late stage and it's, and very costly, is a huge societal savings. So, you know, that's the logic that plus, I mean the, the humanitarian gift of lengthen lengthening those healthy days, uh, you know, it's hard to understand how you can, um, de deny that opportunity to people. Yeah. So, and that's kind of the way we think about it. And, uh, plus, you know, delaying that late onset, uh, in addition, shortening it is one thing, saves money, but delaying it by having a longer period of early stage saves lots of money, uh, trillions of dollars over time. So acting, understanding those early diagnosis, you, you know, one of the other things that, that we wanted to cover in, um, and, and summing up, you, you talked about Jerry, you knew you carried the gene.
Speaker 0 00:51:03 Um, your son has been tested, so he understands the gene sits up there. We've learned a lot from cancer in the same way that we can understand the BRCA gene on breast cancer to a similar side, that early detection can allow you to be aware of it and pro and, and have more of that good time in the front end. Um, if not a, you know, a allow us, I don't know what, what's gonna be done on the study side to increase or maybe avoid the disease longer term for other PE people, generations behind us. There, there are a number of reasons people don't join clinical trials, and so many of them can be addressed. Uh, if we had money dedicated just to increasing enrollment first, rarely do physicians, the specialist or, um, family care physicians recommend that someone with a diagnosis of Alzheimer's participate in a clinical trial.
Speaker 0 00:51:56 And that's a tremendous inhibitor because the research shows that if your authoritarian physician suggests that you consider it as a tremendous, uh, benefit downstream in your decision to join, so many people don't know anything about them. And if they know about them, they have trouble finding them. So the tools aren't right. So those are some of the things that we could, we could fix many of those things. The other thing is I think we have a tremendous, uh, incentive in making people aware that if it's a familial disease, you have passed this gene very likely onto your children. Your progeny, your Jerry's granddaughter may carry the gene. It is such a greater incentive to be in a clinical trial if you think that you can save your grandchild from having this same difficult disease. Uh, and we don't, we don't tell people that, we don't explain that to people to make them realize how important it is to be in a trial to try help find a cure.
Speaker 0 00:52:56 And one of the reasons is I, uh, perfectly frank, we've had 99% failure rate up to this point, but things have changed so much with the science. Tony, when Jerry was diagnosed, there wasn't much excitement. Today there are, there's two drugs approved, and there's a very, uh, a large pipeline of very exciting drugs, not just in, in medications, but also in diagnostics. Soon we're going to have a blood test that will help, uh, determine, uh, diagnose the disease. And we even now may soon have a retina scan, so a retinal scan so that we can look into the eye and tell whether or not someone has the disease. I mean, these things are not, are not 10 years off. There may be a year or two away. So th there's so much reason to, uh, to be in a trial that really hereto four had not been the case.
Speaker 0 00:53:49 Well, I, there are what, 6 million potential voices out there to kind of hear and to work through some of that at one level or the other. Uh, so I hope those, as well as any that might come up behind us, have had a great opportunity to listen and hear from this, to know that there's, there's hope you're not alone. If you're a family that's, that's struggling with this, or you got an inkling that you're starting to, to struggle with this, I think this is, uh, you, you have a great model. Again, you know, uh, Jim and Jerry, I, I just sincerely appreciate you guys opening that story and helping people understand, you know, a way to kinda live in that moment and then work our way through the shifting landscape as, uh, as we've come to know more and more and understand more and more about Alzheimer. And thanks for, thanks for joining us this week, sharing your time, talents, and treasures to help us understand and bring this awareness for Alzheimer's awareness, Montana. Tony, thank you so much for giving us this opportunity and for doing what you're doing with the show. It's terrific. Thank you. Thank you.
Speaker 2 00:54:50 Well, that's it for the team this week, and thanks for joining us. If you've enjoyed the content, remember to subscribe and to share this episode on the app that you're using right now. Your reviews and your comments, they really help us expand our reach as well as our perspective. So if you have time, also drop us a note. Let us know how we're doing for tips and tools to clarify your parent project, simplify communication with your stakeholders, and verify the professionals that you choose. You can find us on YouTube, follow us on Instagram and Facebook. Thanks again for trusting us. Until our next episode, behold and be held.
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