Finally! We turn the tables as our host Luanne Bole-Becker shares her story of transitions, including dealing with Alzheimer's.
At first, it's a story of improbable job changes. With a degree in accounting but a constant urge to infuse life with more creativity and adventure, Luanne eventually transitioned into an exciting career working with the families of the Challenger astronauts. (Even when they were based in another city, they created a job just for Luanne!) It takes an awful lot of persistence and effort, but it's possible to make something like that happen.
The bulk of the podcast, however, deals with the transitions surrounding Alzheimer's disease. Luanne's husband and creative partner was diagnosed unexpectedly at the young age of 58. Managing this disease well requires significant and ongoing transitions, both on the part of the person suffering memory/brain loss, and their caregiver(s). Learn how Luanne and her husband Bob have traveled this long and challenging journey.
Here are some of the resources and organizations that have helped tremendously in dealing with Alzheimer's.
CLEVELAND ORGANIATIONS:
https://www.alz.org/cleveland
https://farrellfoundation.org/
(Note: The Farrell Foundation is so unique. They offer free, arts-based programs several times a week for you and your loved one. This often leads to new friendships and an invaluable network of resources and suggestions.)
https://www.rockportseniorliving.com/services/elder-daycare/
(Note: Not every day center is well equipped to deal with people suffering memory loss. Rockport Senior Living IS. It's a casual, caring, flexible environment offering meals and personal care as well as person-centererd activities.)
http://www.hospicewr.org/patients-and-caregivers/our-services/hospice-houses/Documents/Western%20Reserve%20Nav%20brochure.pdf
(Note: The Hospice of Western Reserve Navigator program is available at ANY stage of dementia. In addition to access to a nurse 24 hours and regular social worker consultation, it can provide a weekly volunteer to stay with your loved one at no cost while you take an hour or two for yourself. It is a life saver! Do not wait on this one. IGNORE the word hospice and call right away.)
NATIONAL RESOURCES:
https://www.alzheimersreadingroom.com/
https://teepasnow.com/
This episode was recorded 9.18.18. All portions are copyright 2018 Luanne Bole-Becker.
Finally! We turn the tables as our host Luanne Bole-Becker shares her story of transitions, including dealing with Alzheimer's.
At first, it's a story of improbable job changes. With a degree in accounting but a constant urge to infuse life with more creativity and adventure, Luanne eventually transitioned into an exciting career working with the families of the Challenger astronauts. (Even when they were based in another city, they created a job just for Luanne!) It takes an awful lot of persistence and effort, but it's possible to make something like that happen.
The bulk of the podcast, however, deals with the transitions surrounding Alzheimer's disease. Luanne's husband and creative partner was diagnosed unexpectedly at the young age of 58. Managing this disease well requires significant and ongoing transitions, both on the part of the person suffering memory/brain loss, and their caregiver(s). Learn how Luanne and her husband Bob have traveled this long and challenging journey.
Here are some of the resources and organizations that have helped tremendously in dealing with Alzheimer's.
CLEVELAND ORGANIATIONS:
https://www.alz.org/cleveland
https://farrellfoundation.org/
(Note: The Farrell Foundation is so unique. They offer free, arts-based programs several times a week for you and your loved one. This often leads to new friendships and an invaluable network of resources and suggestions.)
https://www.rockportseniorliving.com/services/elder-daycare/
(Note: Not every day center is well equipped to deal with people suffering memory loss. Rockport Senior Living IS. It's a casual, caring, flexible environment offering meals and personal care as well as person-centererd activities.)
http://www.hospicewr.org/patients-and-caregivers/our-services/hospice-houses/Documents/Western%20Reserve%20Nav%20brochure.pdf
(Note: The Hospice of Western Reserve Navigator program is available at ANY stage of dementia. In addition to access to a nurse 24 hours and regular social worker consultation, it can provide a weekly volunteer to stay with your loved one at no cost while you take an hour or two for yourself. It is a life saver! Do not wait on this one. IGNORE the word hospice and call right away.)
NATIONAL RESOURCES:
https://www.alzheimersreadingroom.com/
https://teepasnow.com/
This episode was recorded 9.18.18. All portions are copyright 2018 Luanne Bole-Becker.
This is"Passing Through Life," a show that explores how people navigate major life changes. Just how do we make it through what life throws at us? I'm your host, Luanne Bole-Becker.
:Today's episode is called"No Regrets." It's episode number eight, and we're turning the tables a bit because I'm actually going to be the guest today. So I finally get to talk a whole lot. Basically"Luanne Unleashed!" I'm also thrilled that means that we have a guest host. His name is Rob Certner.
:And I welcome you, Rob, and I thank you for joining us today.
Rob::Thank you.
Lu::Sure. You've got a diverse background. I think this is just still a partial list, which kills me. A former CEO of the Cleveland Jewish News; former finance director, the city of Cleveland Heights; and just recently--because he's crazy--received his substitute teaching certificate for the Cleveland Municipal School district.
:Along the way, he also earned his United States Coast Guard master credentials, piloted his own trawler over 7,000 miles throughout the eastern U.S., the gulf of Mexico and The Bahamas. Clearly I'm going to have to invite you back so we can learn more about your life journey. But not today. None of that, though, has anything to do with how we know each other. It's actually a little more personal. As many of you know by now, I'm slowly losing my husband to Alzheimer's. It's a long journey of becoming a widow with my husband here, but not quite here. Well, Rob didn't have to deal with Alzheimer's, but he did deal with a malignant cancer that stole the love of his life from him in May of 2017. So we've bonded over the shared experience of grief and loss and how to deal with the loss of a great love and yet still move ahead and really live. So I'm going to turn the reins over to Rob as he gets to lead this conversation and I'll try to be a cooperative.
Rob::Yes, thanks very much, Luanne.[Sure.] It's my pleasure to join you. And as they say, turnabout is fair play. So you're the interviewee today. So today we're going to talk about transitions, professional and personal. And the latter in your case is very, very personal. But let's start at not at the beginning, but somewhere early in your career. First, the Federal Reserve of Cleveland and then the accounting firm of Ernst& Young. Tell us what you did.
Lu::Well, what I did, I got out of school with an accounting degree and so went into those number type things. First I was an auditor at the Federal Reserve Bank. Then I converted out of that as quickly as I could to be a systems analyst. So got more into the computer side of things and eventually, focusing on methodologies. Woo hoo! But basically how do you build systems and how do you make things kind of consistent? That's what I did.
Rob::So was it satisfying work?
Lu::No.
Rob::How long did you do this unsatisfying work?
Lu::Apparently, I love torturing myself! First I did five years-- It sounds like a sentence!-- it was five years at the Federal Reserve Bank, which was actually a very good place to work. That's where I was the auditor. Didn't like that because honestly, you walk into a room and you're already the enemy, no matter what you're doing. I would say,"Wait, wait, wait, you made these rules. I'm coming in just to see if you're following them." But yeah, I like to be liked a little more than that. Systems analysis was not a bad fit for me. Actually. I like to create things. So I like to create, if I can--and you might not think this looking at my house-- but I like to create order out of chaos, to really get down to what is the essence of something. So systems analysis isn't bad. And I did that at the Fed.
:I left that job trying to make more money, a little bit more, and I'm sure for the possibility of moving up. Ernst and Young, that was really corporate. I have to say that I can do it. I'm really good at it. But it's not me. It's not my personality. I got into that because my husband was in radio and I thought, okay, one of us has to be the stable one.
Rob::So you did it, you were good at it, but you didn't love it.
Lu::Didn't love it.
Rob::Well, I know you've made some changes in your professional career and a lot of people make changes. In fact, most of the statistics show that people change, on average, careers between five and seven times during their lifetime. What about your decision was unique? How did you prepare for it? What was the incentive for making a change? Did you wake up one morning and say, oh, I have to make a change? Or was it a gradual progression of change in attitude and feeling?
Lu::Well, that was a lot of questions! Let's see, which shall I answer first? Um, it's both gradual and an Aha moment. So the gradual is, I felt ill often getting up to go to work. Physically ill, nauseous. It was such a stretch at some point for me to be that person. I can fit a role really well and I understand what's needed.
Rob::Was it more of fitting a round peg into a square hole?
Lu::Right. Am I round or square? I don't know.
Rob::You're not square!
Lu::Thank you. Thank you. So I was often unhappy and I came out of a not real pleasant childhood. So when I went to school, I was on a four year scholarship and I thought, I can't change this degree even if I want to. I'm getting through. So I can be really practical. Again, those who know me now might be surprised at that, but I understand limitations and it's like, I'm getting out of school. I'm getting out.
Rob::So as you were working for both Federal Reserve and for Ernst and Young, did you have that same feeling that I can't get out of this?
Lu::Yes. In each of those jobs I asked to go to four days a week. And again, think about the era then. There wasn't flex time and there wasn't flex time for women in particular. You know, you're trying to show that you're equal at least and you can do this stuff. And the reason I'm doing it is I want to be artistic. And I was so left brain in those jobs that I needed that. And in both of those I converted to four day weeks either I think actually taking less pay or I tried to talk Ernst and Young into that I should write a book because I was intrigued by the stories behind the people in systems analysis. You know, Bill Gates! Back then nobody knew who Bill Gates was. It's like, Hey, I want to write a book. Then I got pregnant. I said, Geez, I need to be practical.
Rob::So you have to balance your happiness or your discontent with your happiness, or the happiness you desire against making a living.[Right.] How do you make that transition? How do you, how does the thought process go? Where does the fear come into play in making a change to something that you don't know anything about?
Lu::First what I tried to do, which again is the more practical advice that I think works for some people, was to try and do something on the side. And that's why I would ask for those days off. So I was doing stained glass on the side. I learned how to do that. So you'd find me at Boston Mills, I was showing pieces there. I did ballet slippers, little stained glass ballet slippers for the Cleveland Ballet a long time ago. And that gave me something, and could sort of balance it out that I could do both. But my personality is such, and this figures into also my marriage, I go full tilt. So it's really difficult for me to switch on and off and on and off. And I really, really wanted something, but I didn't even know what it was. I didn't know. So the Aha moment comes--serendipity or whatever. My husband and I were supposed to go together to space camp.
Rob::So what is Space Camp?
Lu::Space camp, the original is down in Alabama. They have a second site at the Kennedy Space Center. It's a place where you can go and pretend you're on a space mission. So it's immersive and kids can go, you pays your money and you go. And you actually, either you're part of mission control for part of this and you do a full space mission or in that case, you know the era I'm at, you're on the space shuttle. So you get to be on a simulated arm of the space shuttle. It was amazing.
:Now what I have to say is we had made our plans to do this. It's two years after our son was born. My husband's working at channel three, and he gets laid off right before we're supposed to go. Of course. And I'm supposed to cancel. And I'm like, please, please can I go? And he said, yeah, whatever. This is the first time since my son had been born-- He was two years old at this point-- that I got off on my own too. So I think that factors into it. I went on my own. Yes, loved it. It's less the idea of becoming an astronaut, you know, I knew even as a kid that's probably not what fascinated me. What fascinated me was to explore the idea of space. You know, this frontier that you don't know what it is. And I'm here with all these other like-minded people who agree with me. I mean we are like just Gung Ho! They have a life size replica of the space shuttle outside the dormitories outside. And I sat there one night and I probably cried, thinking,"My life needs to be as exciting is this in some manner!" And the secondary thought was someday I might have grandkids. And they say,"grandma, what did you do with your life?" I just couldn't answer that question by saying,"Oh, I worked on accounting systems and, and you know, standards."
Speaker 3:So it almost sounds like you simultaneously were looking forward and yet trying to create a retrospective of your life at that point in time,
:I was always looking, trying to figure out what am I supposed to do with my life? I think that's pretty common if you have the luxury of looking at a variety of things, and I consider that all my job changes were process of elimination. I would do something and go, nope, nope, nope. That wasn't quite right. So yes, I kept looking back like what did I want to do as a kid? And I wrote, I wrote stories too. So I come home from space camp and you know, my husband's like,"hey, how was it?" I knew that I needed to make a change, but I'm an accountant. I'm an accountant. How do I get on the space shuttle from that? Now it's funny, if you go back to my scrapbooks at that time I applied to NASA to be an accountant. I'm like, okay, I'll at least get in the general area. I'll just rub shoulders with the people doing something cool.
:I started giving talks. That's right, about space camp. So clearly I'm talking about this now and I can feel my energy go up.
Rob::Who did you talk to?
Lu::Groups at libraries. Schools. First I found another person in Cleveland, a librarian who also went to space camp and was as crazy as I was! And we would just, go on the circuit, talking to... It wasn't so much senior centers, it really was libraries and schools. And space camp loves you. They send you slides and you become an ambassador. So I did that. At the same time though, my fellow space campers, we kept in touch. And one of them said,"have you heard of this other organization called Challenger Center?""Nope." This is roughly 1989.
:What it was, was a nonprofit, the only nonprofit that all the families of the Challenger astronauts formed together to encourage kids to do problem solving and math. And focus on what their loved ones cared about: Exploration and problem solving. And I slowly just...maybe not slowly, I don't do anything slowly!... But very persistently started sending out feelers. I would write letters, make calls, and there was a Cleveland connection. Now Challenger Center is based in Alexandria, Virginia, outside of Washington DC. I'm in Cleveland. I have a little two year old and a husband who's working here, and I'm probably not moving, but I just keep reaching out. And I won't go into all the details, but the stars aligned. I put myself at a space conference in Chicago. I had already reached out to a number of people there and the President of Challenger Center was there. And I started talking to him. He invites me for beer. I'm sitting there with all the generals and talking about space. And at some point, I say,"Hey, I'd like to work for you."
Lu::And he's like,"Oh, I'm sure there are plenty of places that could use a young energetic woman like you." I said,"no, no, no, you don't understand. I want to work for you!" And that worked! And he said,"okay, let's talk." He invites me down to Washington.
:Now my Ernst and Young background comes to play because I write the best darn proposal I've ever written in my life, merging things that they needed. I interviewed all their VPs. They were a smaller organization and there was a bunch of writing projects that I could do, things that meshed with being a systems analyst and a technical writer. So I could do their user manuals, I could write their newsletter. And I proposed that. And then over the course of four or five years, I finished all those projects. I became assistant to the president... From Cleveland! That's the part that kills me!!
Rob::And it kept you close to something you really fell in love with?
Lu::Yes. The very first trip that they sent me on, I was on a bus with the teachers in space. So if you remember, the Challenger had Christa McAuliffe. Well, she was selected by a process that chose two teachers from every state. Who is left, who didn't go, they became Challenger Center's faculty. I mean, that's a pretty amazing group of people, and they would get them together annually. And what one of my projects was, was to pick their brains and create a set of curriculum of the best space science classes. So I'm sitting on a bus, going out to Jet Propulsion Laboratory and thinking,"I can't think of anyone else I'd rather be with. This is so cool." Um, it was wonderful.
Rob::So that's extraordinary. I mean, I think the fact that you got to do something by drawing on your past experience, but at the same time encapsulating... And it's something that you got to know and love, was really pretty remarkable.
Lu::Yes. And if someone's listening to this, if you can draw something from it, it's you don't have to have a plan. Stay open to what's there and just keep pushing. I mean, I can't tell you how many people said no to me in that and then the subsequent careers. You just keep looking for it and you create the path, if you're that passionate.
Rob::Right. And what happens? What happens if you don't create the path?
Lu::You mean if you don't even try to create the path?
Rob::Right. What happens to your life?
:I think you close down. I would close down. I wouldn't be talking to you like this!
Rob::There's was a quote by Thoreau, and it goes,"Most men live lives of quiet desperation." And that's sort of what I sense what you're saying.
Lu::Yes. Yeah. And, and then the verb, I'm not sure the verb even works. Are you living your life, right? Yeah. No. You have to balance it somewhere.
:Before we talked a little bit about balance. I didn't just go off and leave. I just kept trying different ways. And again, those five to 10 years in very practical careers, we saved up some money. So not only with Space Camp, then subsequently my husband and I started our own business. I don't remember the details, but I think, we had about a year's worth that I could putter and try to figure how to make a change. So you know, if you can give yourself some leeway somehow.
Rob::So you're probably at an age where most people think about retiring, sitting on the front porch, doing absolutely nothing. That's probably not going to be the case with you. So what's next?
Lu::I may do nothing for a day.
Rob::Okay, that's fair enough.
Lu::I think what's different now and we'll get into the next stage of my life, why? As you can tell, I like to sort of plan and strategize and figure things out. I think the goal now is to not do that. It's more to stay open, to keep going out there and trying different things. So, for example, you know, I've started watercolor painting. I doubt that that's going to become my lifelong career. But I don't know. But you don't know what it leads to. So I think, at least in this small window of time, what I'm about is just trying things and seeing who God and life and the universe brings into my path and then try and make something happen.
Rob::So it's, it's almost sounds like the same kind of advice you could give to someone who is in a career that they may not be particularly happy in right now. And sort of how they should process their thoughts looking forward to making changes or transitions.
Lu::I agree completely. I mean, it's your life. Own it! Figure out what it is that you need and figure out a way to get that in somehow. So, you know, maybe it is a hobby. I don't know. I think it's better if you can work it into a job depending...For me, that's true.'Cause like I said, I don't do well with segmenting my life.
Rob::Right. okay. Okay, good. Thank you. So let's move on to your personal transitions, if you want to call it that. You've already mentioned that Bob has been diagnosed with Alzheimer's. How long have you and Bob been together?
Lu::44 years. When this is being recorded, we just celebrated our 40th wedding anniversary, but we were dating for four years prior. Yeah.
Rob::That's as we say,"Mazel Tov." So tell me, what was the first hint that you had that something was happening with his health? How did you respond? How did he respond to that?
Lu::It's really, the word that's coming to mind is insidious, and my husband was 58 when he gets diagnosed. Okay. He's 58. He's a radio and TV talk show host. So he's using his brain. He was. Especially a talk show host! When I think back because that's not only preparing the topics and throwing them out there, but you have to react as people talk. This is not just a scripted thing. So it never crossed my mind, Alzheimers. I mean never. And at that point also I knew so much less about what this disease is.
Rob::Was there any indication in his health background and the background of family members?
Lu::Nope. Bob, he was relatively healthy. I mean he was a healthy guy, you know. A little bit overweight. His family is prone to high blood pressure. Had that, he was always borderline high. He would go to the doctor and he would say,"oh, lose a little weight, little less salt, exercise." And he didn't do that. I only bring that up because, we've talked, we've mentioned the word Alzheimer's at this point in time. It is one of the top 10 top killers. It IS a killer. We do not know what causes it, how to prevent it, cure it, any of those things. They think(they, the medical research groups) that whatever is good for your heart is also good for your brain. So there's a small possibility that unchecked blood pressure might have contributed.
:How do you know it's starting? How I know it's starting... The first thing I can clearly remember is I'm sitting in my dining room and he's over where he would put his stuff. You know, where you drop all your stuff. And he can't find his keys. And now again, that is such a non-weird thing, but he's standing there swearing.
Speaker 2:If you know, my husband, he didn't swear. This isn't me. This is my husband. He doesn't get angry. He never got mad, and he's getting angry. So that was weird. That's the first thing. Then I'm thinking it starts being weird word choices. You know, like instead of saying wristwatch, he'd say something about his hand clock. Then what happens is, a couple of things go on and then you start thinking...
:Oh, he was at the gas pump. I remember we stopped at a gas pump when they just started switching to more autopay. He had to put our zip code in and he couldn't fill the gas pump and he gets in the car and he's all frustrated and he's like,"yeah, it didn't work." No, I don't think he remembered the zip code. I mean, I thought about that later.
Speaker 2:He was starting to have problems doing his time sheet. He'd have to go back into work because he couldn't do his automated time sheet. And what I remember as Bryan, my son, and I started talking about it, he was trying to help Bryan set up a credit card online and he couldn't figure out the computer screens. Now this is my husband who is my technical guy. We had our own video production company, besides the radio and TV. He was my tech, you know, so he loaded all the software. He edited. This is a man who ought to be able to figure out a time sheet, et Cetera. So it's really this, this long period of things not quite working. And then you go,"Oh wow, I wonder if... I wonder if this could be all related?"
Rob::Did he notice it? Or did you notice it?
Lu::He never noticed it as far as I know or never confided in me. And I know we're going to talk a little bit about our conversations. It's just so weird with Alzheimer's because it's a brain disease. Let me get that out there right away. First of all, Alzheimer's is a form of dementia. Dementia is just the umbrella term for if you have a degenerative brain disease. Okay. Alzheimer's is the most common form of dementia. People think that Alzheimer's is just about no memory. It's like if he just forgot stuff we would live, we'd be okay. But it's your brain that stops working and forgetting stuff means you forget how to move your body, et cetera.
Rob:Okay. So tell me something you, Bob had the good fortune of being married to you, having children. What if Bob hadn't been married? Who notices it then? Is it, is it up to friends? Is it up to other family members? Is it up to the person on the street? I mean, it's gotta be a little bit frightening.
Lu::Even living with someone and knowing them, well you don't notice it at first and typically Alzheimer's hits later in life than it hit my husband. His is called young onset because it's before 65. But there are some things that happen in aging that you just forget things more. So, yeah, it's who's around you.
:And I honestly...I just attended a meeting where they gave a scenario of a woman going through an airport and she sees an older woman just standing there really confused and it turns out this woman, she had Alzheimer's. she had no idea where she was going. And it happened to be somebody who just happens to work with people with Alzheimer's was who she tapped on the shoulder. And this person said,"hmm, well let's call someone over." And they ended up being able to find the daughter.
Speaker 2:it's really scary because at the early stages, the person with it doesn't know they have it. That's what's scary. When, you ask,"oh my gosh, I wonder if that's Alzheimer's," what people will typically say if you have the wherewithall to say,"I wonder if that's Alzheimer's". It probably isn't. Okay? You're already, you're failing, you're losing abilities.
Rob:So when did you know, when did you really know?
Lu::I knew something was going on in 2011.
Rob::When did you go to the doctor?
Lu::December of 2011
Rob::So it was confirmed then?
Lu::Yes. we went to his general practitioner.
:I'm not sure a lot of doctors understand how to diagnose Alzheimer's. They really need to be better trained and not just wave it off. Because since then I hang around with a lot of people with Alzheimer's and their spouses and caregivers. I've had people who they themselves do go in and say,"something's wrong, doc. My brain is not working the way it should be." And they say,"Oh, you're just getting old." And the doctors let it go. It's like, no, no, no, no, no, no, no. Hopefully there will become more screening tools. But there's an in-office, you know, just a few questions that are pretty typical. You get to know them. And then he had an MRI which confirmed brain loss and then he had a very extensive testing on down at Cleveland Clinic.
Rob::So once you've gone through the testing, the diagnosis is now confirmed, what do you talk? What does he talk about with you?
Lu::Well that's...
Rob::You're now entering a transition that wasn't planned.
Lu::When you're in the doctor's office, the phrase they typically use is"the new normal." Okay. And they're right. It's true, your new normal. But it has always sort of really bugged me when I thought about it because their new normal meant we were going to lose our business. I was going to lose my husband. I was going to lose my creative partner. At that time, it's before the affordable care act. We're going to lose our medical insurance. Pretty much everything that I know in life is going to change.
:And that's my new normal and I don't know what it is. I don't know much about Alzheimer's. I don't know what we can do about it. It's like, okay, go live your life. It's going to be different.
Rob::And the new normal continually changes.
Lu::Oh yeah. And what happened, we had our own business. I was working on the side, I was trying to have some steady income. And we had our own business. I go into a depression. So not only is this not planned, this is the normally feisty, gee-I-can-handle-anything-Luanne, and I'm useless.
Rob::What's your relationship with Bob at that time as you're sort of, you know, falling off the cliff?
Lu::He's feeling bad, but he's not quite sure why. Do you know what I mean? You now, let's go back to the question you asked. What do we talk about? He's already lost some of the capability of understanding what's going on.
Rob::So the progression was there?
Lu::There's enough there. I mean, yeah. Then add in Alzheimer's can hit anybody completely differently. Completely. The lifespan typically after diagnosis is five to 20 years.
Rob::Oh, okay.
Lu::So he might not notice anything. This might not do anything. So, and whether I learned it very quickly or I found out on my own, my mood affects his mood.
Speaker 2:So whatever the caregiver is doing is going to be reflected. So yeah, at first I literally am just going to bed and pulling the covers over my head because I can't stop my brain from trying to figure this out and I can't find an answer. So it's not like Space Camp! I was excited and I could focus, this is just swirling through stuff. So I asked for a leave of absence from my work. So we had also just moved. I know you had asked me how long we've been in this house. Literally my husband was diagnosed the week we moved in here.
Rob::Great. So how long after Bob was diagnosed, was he able to continue to work?
Lu::He works for another year. He's diagnosed in 2012. To the end of that year. He's still able to talk at that time. What's incredibly ironic, and again, this changes with everybody. My husband's a talk show host and he was host to the Ohio lottery for 26 years. He was on a local radio station.
Rob::Not once did he draw my numbers!
Lu::He was the talent. He was the pretty face. Okay? Yeah. He always said, if he colluded with you, you guys could share a jail cell together. So, yeah. I'm sorry, Rob. Oh, well.
Rob::So you're now dealing with this. But you now are also dealing with the reduction of income from his full time job. So again, I want to go back to the conversations that the two of you had, which had to span, you know, what's happening personally, what's happening professionally, what's the future looking like? Is there a future to look forward to?
Lu::It's more, I can remember the reactions. I remember him coming home from the lottery once, just walking in the door and, and making the sign of the"L" on the top of his head. He goes,"I just feel like such a loser." because he's starting, he is starting to realize. And he sat through all the discussions at the doctor. But it's not like I pried and said,"Bob, do you realize your brain's going down? I really, I don't think we had the really tough conversations because I didn't know what he could understand. I didn't want him to go into the same depression I was doing. One was a enough. And honestly I was the one who took care of our finances and our planning. So I knew this was falling on me, not him. My job was to keep him encouraged, to keep him feeling that he could work. If we were going to have those conversations then and he's already impaired, my sense was that he would become impaired faster. So no, we didn't, we didn't dwell on it. To his credit, somehow, my husband is a happy person and he never got depressed. Sorry, I'm going to start crying. I took all the stress on me. He did not. No.
Rob::So at what point, at what point during this really wonderful marriage that you've had, at what point did you get a feel yourself? Did you feel yourself transitioning to the role of caregiver and is that role compatible with the role of a wife?
Lu::it's pretty immediate in some ways because like I said, we moved the week he was diagnosed. I would go off to work, I was working outside the home at that point and I would leave lists, saying,"could you pack up your office? I need you to do this, this call, this one," whatever. And I'd come home and nothing would be done. And that is not my husband. Again, not only did he not get angry, this is a guy who took care of everything around the house. I was just telling somebody today, I can be the messy one and my kids can be messy too. He cleaned up after us, he made the household run, all the physical stuff. Now that's not working anymore. Okay. So in that sense, I'm a caregiver. And I realize that he's going to lose his ability to be a productive person.
Speaker 2:Now that doesn't mean he stops being a valuable person, but it's like, okay, he's not going to be able to work. How does he fill his days? How do I keep that brain going as long as possible? And I start looking for volunteer opportunities that he can do. Oh, I gotta say, this is one of my pet peeves. I guess I have a number of them. They come out! our society, our communities are not set to handle this. You know? And again, you asked about what do you do with somebody who doesn't have someone looking for them? I don't know. They just, they just die. They just wither up and die, you know? Here my husband is willing and able to do some things.
:But first I tried a couple of things. Habitat for Humanity. He used to be able to build and I actually had a friend offer to kind of be a buddy with him. That just didn't work out that well. My husband didn't know the person that well, so, okay. That didn't work. Then I thought we deliver meals. He was still driving a car initially for 18 months. He could still drive. but you really have to understand the maps and whatever. So I'm working, I'm trying to do our own business. I decide, oh well, we'll do it together. Okay, I'll just take on a volunteer opportunity. It actually ended up being very good for two years. I took Tuesdays off and Bob and I delivered meals together. It was something he was equally as good at as me. Think about that with somebody with Alzheimer's, they are constantly being told they're losers. Right, okay. They're constantly being told what they can't do. We found something we could do together. That was good. I tried that he could walk dogs. he loves dogs and trying to understand which dogs, trying not to upset the other ones, logging them into the computer. So again, I started picking up another volunteer opportunity while working. It would be lovely if there were some type of opportunities like this for people diagnosed with Alzheimer's, but still capable to give.[It's a great idea.] It really, it doesn't exist, as far as I know. You asked about being a caregiver and wife. Those roles, they interchange, and they work together and they don't. On the one hand, I know a lot of tricks. We have 40-plus years of stupid movie quotes and jokes and stuff that I can draw on to usually make him laugh. On the other hand, this is now my husband is like my child and that has all sorts of emotional crud around it. I tried to explain it once to somebody and said,"I feel like I'm the recently widowed grandmother taking care of her special needs child who reminds her constantly of the husband she lost."
Rob::well said. It's not insulting.
Lu::Yeah. I'm older, you know, this doesn't have the joy of taking care of a child. Yeah. I'm seeing him decline. my social workers have told me when you signed up for marriage, you weren't signing up for twenty-four hours, you know, you're a husband and wife. It's okay to find some time and space. So we'll get into that in a bit.
:But I mean, I just wanted to talk about another thing. Now if we go clinical, it's called ambiguous loss. It is comparable to what someone who has a P.O.W. or a kidnap victim feels. They're not there, but they're still there and you get no closure and most people don't know how to deal with it and deal with you. so it is just a really messed disease. And so caregiver, wife, I don't know. I mean it's all together and yeah, it gets done.
Rob:Yeah. I just want to just take a step back because one of the things, you knew what was happening. You have children who didn't at the time. how did you bring them into the conversation?
Lu::I can't remember now whether it was before or after the diagnosis. it's probably pretty simultaneous. I remember especially the conversation with my younger son, Bryan, who's sitting in the room with us and I said,"I think something's going on with Daddy's brain and it might be Alzheimer's." And what you, you related this story--my son Bryan did to me-- of trying to do the credit card thing. It's like,"oh!" I got the sense it was that same kind of Aha moment of,"oh, that would explain it." Similarly, Bob's sister, who lives an hour away from us, she would call regularly. And when I told her, she said,"oh, I thought that he was just stressed out all the time. We would talk on the phone and then he would repeat things or he would ask questions." So again, there's a lot of reasons for these little things.
Speaker 2:So back to my kids. My younger son was 21, my other son was 26, 21-year-old is off in Chicago. He's almost finishing his college career. He's about to start his life. Okay. I do not want this to hinder him. Okay. There's nothing that he could have done that coming home was going to help. At this point, my husband is still functioning in some ways. And again, I remember what it felt like walking in, being depressed. I had never been depressed before. I go through cycles, I think, but of getting up in the morning, going in the bathroom, turn the light on."Why do I bother? Why do I bother getting up? Why? I don't see the point. I don't want to do this anymore." You know, I did not want that transferred to my kids. There's no value in that. And similarly, my older son was 26. he was in a burgeoning career. He's a graphic artist doing television news. So I told them, but we didn't dwell on it. It was more,"this is what's going on."
Rob::So it was more informative. Yeah. You don't want them to be, I mean, you're a mother, you're a parent. Right. And you want to protect your children as well. But at the same time, Bob's timeline, the length of his life is in some way going to be shortened. Yes. So your children should have the opportunity to make some of those decisions to spend time with him?
Lu::Yes. Well, well, one of our sons was living with us and still is, I mean our older son. He went away to college. I think by this time(I'd have to do the timeline...) He's with us. So he's seeing what's going on. Okay. So we may not have been having a whole lot of conversations because that son also is a very quiet gentleman. He knows what's going on. and my son who is away in Chicago knows that this is happening.
Rob::How do you make decisions about his ongoing care? I mean, do you make those decisions? Do you make those decisions in concert with your family, based on recommendations of doctors or hospice? I mean, how do you make the decisions that are affecting his day to day life and, in fact, affect your respective lives?
Lu::We did finally go to a support group. Nine months in. I waited. My husband was a public figure. I felt I could not confide in hardly anyone. so my kids knew, couple of family members knew and our best friends and that's it. So everybody else thinks my life is great. I've just moved,"hey, how's the new house?" You know, taking some time off for the house. Yeah, I can't get out of bed and I can't tell you. How do you tell people? I wasn't good at a mask at Ernst& Young. How's it feel to have a mask on for nine months? When I walked into that support group, finally when they convinced me that we could be somewhat anonymous, that we could go in. It was the first time I relaxed in nine months because I was sitting with a bunch of people that I didn't have to make excuses for why my husband is doing whatever he's doing now.
Speaker 2:Now you might not fit. I had gone to one previously on my own, but that one had a lot of kids whose parents had Alzheimer's. I didn't feel a connection. This one worked. So your question was how do you figure out care steps? At first you just try to learn. I think support groups can serve a variety of functions initially. You know, a safe space. There's an awful lot of learning that goes on. So trying to figure out what our options are. I think I first learned about that through our support group. I made most of these decisions on my own. I would tell Bob what I was thinking. So it's not like I said,"okay, you're going to do this." At least initially. At this point, Bob, he's actually qualified for hospice. He's living at home with us. I'd consider this moderate, late stage. It's still, I mean it's late stage, but people are surprised because he's still aware. He's still slightly mobile. He is being cared for now by myself. honestly, even more so, I've built a team of caregivers. And I do want to talk about the continuum from getting from no disease to where I am, but I have four caregivers that help me a great deal. I get 50 or 60 hours a week. My kids are around. They also assist. If we weren't working with him as much as we are, he would probably be bedridden. What he is not capable of doing, most facilities would not have the staff and time to help him. To help him walk around, to help him get into a vehicle is excruciating at this point. But we still think he's benefiting from the variety. So figuring out the care, now I have my kids around me and I've got to say that has been the most unexpected blessing to have young adult children, two sons and a daughter-in-law too, to be a team around me to listen to those decisions and give me input and be part of that. It's real tough doing that on your own. It's really nice having someone else who understands the person and understands what..
Rob::I don't know your family. Yeah. But I will tell you that no one will do that unless they deeply love you. And when I say that, I mean you and your husband and one another, you should be very proud of that.
Lu::Thanks. Yes. I feel really blessed. I mean, I have always felt blessed that our families in general get along. We get along with our siblings, we think they're cool. We like our kids, they like us. So we like each other AND we love each other. Hopefully we had a lot to do with that, but I don't know how it happens. I'm just blessed.
Rob::It doesn't just happen.
:So I want to ask you a question that is a personal one to you. How do you maintain your sense of self? How do you maintain healthy mental health through this?
Lu::Well, you have to recognize that it's important. Honestly, I mean, I have so many answers to this question because I think caregivers often, especially a spouse, so that's what I know best... if it's a loving relationship there, they're focusing so much on their loved one. they forget that they are important to. You mentioned statistics. I should've looked mine up. I didn't, but caregivers--at least with Alzheimer's and probably a lot of diseases--we are losing years of our lives because of this. We're probably going to get sick and die sooner because of the stress it places on us. Okay. And when you think about it, Duh. If I go down too, Bob's not going to do real well. Okay. There are backup systems here, but it's not the same.
Speaker 2:So number one, it's really important. So understanding that, I think the first thing I did early on was realizing that my expectations of what my husband could do and what I could do were not my friend. Okay. You really, really, really have to just clear the slate. Say no. Okay. There's all different ways of that. I see it in a lot of my peers. The expectations of what you thought your life was going to be. So that big long-term thing, you thought you were going to be retired and travel and all that. That's what you were working for all your life gone. Okay. It didn't, it never existed to begin with. I mean really you made it up. So it's not dwelling on it and just saying,"okay, not there."
:My expectation of what my husband could do-- that took longer. I mean, you get used to things, but he's going in the kitchen and he's just turning the water on. He doesn't turn the water off. He almost set fire to the house once in the microwave'cause he turned it on 20 minutes. And thankfully I was taking a nap. I could smell smoke before it...
Rob:Did you ever get angry?[Oh yeah. [laughter]] What do you get angry yet?
Lu::Actually, I got angry at Bob that... it's funny to say that I never got angry at the situation or at God. It was sorta like," Hey, life deals you a hand and ours has been really good." So it was time to have some crud to deal with. I got angry at Bob because he's just doing a really stupid thing. It's not helping me.
Speaker 2:I mean those are the....boy, I hope I don't have to watch a movie reel of my life of when I've been really nasty to him in this disease. It's when I'm fed up, because I'm doing everything and it's like,"can't you even take one bag into the house of groceries?" I mean, grocery shopping is painful. You get to the car and you're trying to put it in the trunk and he's taking them out. You know, we're shoveling the snow and he's shoveling, putting it on top of mine and you just lose it. so I was angry. That might helpmate is not only not helping me, he's getting in the way. And doesn't understand. Oh, you just...
Rob::And that's why I asked you about your own mental health because you know, at the top of the pyramid, so to speak, when it comes to health care, to his care, coordinating everyone. So for you to do that effectively, you need to be on the top of your game.
Lu::Yes. Yes. So you have to keep...and it's, it's going to change. I mean, his stages, he goes through stages. You think everything's fine. I remember this, I made the darn mistake of telling somebody, and I don't remember exactly what they said, but it's like,"Yeah, we're doing pretty well." And that's when Bob tried to strangle a caregiver with a belt. You know, this is not my husband and this had never happened before. And all of a sudden, I mean, life just plummeted for two or three months until we kind of figured out what was going on there.
:Expectations and the expectations of what you can do. You've really, you just clear the slate. listening to me, we talked about my career stuff. I was so good at scheduling and planning and getting things done quickly. They all work against you with Alzheimer's. I don't know about any other disease, but this one, you have to just... I had to stop being who I was and be okay just doing all those things that you're supposed to do in life. Stopping and smelling the roses, but really to slow down and just pay attention to that guy in front of me and see what he needed and not add on a bunch of other stuff. So I did retire. We had the foresight because of a wonderful friend, we had bought long-term care insurance, no reason. We were freelancers. We figured, okay, that's part of our package of our future. So I was able to retire. Before that I was working at home. I could kind of oversee what Bob was doing. I'd give him tasks of household chores, and maybe he would do them. And I would take him to meetings with me. So people loved me enough and loved him, and it was a flexible situation. So I'm bringing him in until one day I walked out of a meeting with him. I said,"so what'd you think?" And he goes,"well, it wasn't fun for me." I was like,"oh, oops."
Rob::So a couple more questions. What do you do to have fun? What do you do to make yourself smile through all of this?
Lu::Again, it changes. First, even the doctors will tell you if there's something you want to do, do it now. You don't know how Alzheimer's is going to affect your loved one, but it's not going to get better.
Rob:But you also don't know what's going to happen to you.
Lu::Nope. Nope!
:Yeah. I mean I'm going to get hit by a car. You know, who knows, this is true of anyone! So it really makes clear to you that if there's something you want to do, you should do it now. So we finally went to Alaska. We were going to do that at our 25th anniversary. I think we got to on our 37th, I don't know. Yeah, something like that.
Speaker 2:We built--I took you out to see it--We had always talked about building a log cabin. We built the facade of a log cabin in the backyard of our urban Cleveland homestead. So first it's just..and I did stuff with Bob.
:What we didn't talk about is, Bob and I did documentaries together, stuff for PBS. So the way I care give is the way I do life. I'm not a calm, flexible patient person. I've gotten better. We went out and did life. We just went and did stuff. So that's the first thing. We hung out with our support group. We became more social with that group than we were with any of our friends before that because we're all in the same boat. Okay. Again, nobody has to pretend. We all are trying to fill our days in ways that we never thought we'd have to.
Speaker 2:And when we finally realized we didn't have to talk about Alzheimer's, I remember our first thing was going to the art museum. We went and took a tour.
Rob::And now you're painting.
Lu::I am. I am, yes. Because someone told me--I think that was you!--said,"find something every day that makes you happy." Again, it's not that big picture thing that I used to always worry about. It's like when I get up, what's going to get me out of the bed. And I decided I wanted to do some watercolor painting. So I found someone to help do that. I am going out a lot. My kids are enabling me to do that. I'm going out tonight to a jazz concert.[Good for you!] so I'm not feeling guilty about doing those things. I knew there were some other things I wanted to talk about doing.
Speaker 2:That's what! I'm making new friends. I have amazing friends and network, but they're also all part of me as a couple. and I need to figure out who I am again as me. And I realized that in taking care of my husband, I had stripped away every single thing, every other commitment besides Bob and Alzheimer's. It's all gone. And I went into a smaller depression more recently and said,"I have nothing. I don't know who I am anymore." So I'm trying to figure out who I am. Again, this podcast is a reaction to that. Because I'm meeting people who are still working. I'm only in my early sixties. I shouldn't be retired yet unless I had planned really well. And so doing something creative and that I'm having fun--it's worth it.
Rob::Yeah. So do you believe in God?
Lu::I sure do.
Rob:What role does faith play in all of this?
Lu::It underlies everything else. Um, so in the big picture, which to me I think is the most important, but then there's others. I believe in an afterlife. I believe that something happens after death. If you don't, okay. And you know, if I'm wrong, oh, well. But it gives me peace and it gives me peace that my husband is on a journey and he's not ending. In fact, I have told him when he's lucid, I said,"you're scouting this out for me, babe, and you better come back and tell me what this is, what the next part is."
:Early on when Bob was still able to read and talk, we got a devotional book and it was written by a man who had young onset and it was a day by day devotional of what that felt like. And it just mirrored our situation enough that it was very helpful. It was very practical because my husband was able to read still. That was important to keep that. What we were doing up until he entered hospice, hospice here at home, every night we'd pray together. You know, we would just sit down on the bed and the way my prayers typically would go would be just going through the day thinking through and thanking God for everybody who helped us and praying for the people around us. I think it gives... I just have a peace somehow. I never got angry at God. I don't... I know that's a common reaction, but logically it doesn't make sense. on the one hand we have been blessed. Now what if we'd had a cruddy life and then got hit with it? I don't know. Isn't that Job in the Bible? Yeah. Oh, just keep pouring it on. it never occurred to me to be angry. You can be sad, you can be frustrated, but Nah.
Rob::you know, while anything can happen obviously. There has to be that assumption in your lives that Bob is going to pass away before you do.[Right.} And how are you preparing for that transition?
Lu::You know, until he entered hospice, I hadn't really dealt with the memorial service. And actually that helped because, sadly, my husband is now the last man standing of our initial support group. They've either passed or they're in facilities and in worse cognitive shape than he is.
Rob::So you know where the road is taking you.
Lu::Yeah, I do. Still know how we're going to get there. That could take off any side trip. But I've also seen how other people do memorial services. I mean, honestly, it's still a learning experience. So I go to these and go,"oh, I like that there." I know that sounds so silly, but we've taken care of it.
:I don't want to forget this. Do take care of your financial stuff early on. And your legal stuff. See an elder care lawyer, someone who specializes in it. And we did it at least three different times. When Bob was first diagnosed, I actually went to a disability lawyer because I needed to understand what his employers owed to him and what I owed to them. Okay. That was the first thing. Then as you realize, okay, we have to take care of Bob and make sure we have powers of attorney and all that kind of stuff. Healthcare and legal. We did that. I don't think I realized at that moment that I needed to do the reverse. I needed to get Bob off of everything that he was on, of myself, my kids. And then so actually it was four times and the fourth time was to speak to somebody about Medicaid, just understanding the rules. So that as you're making decisions, you got to do that. I found great peace by finally sitting down and writing down every single instruction I could come up with that. It's like if I keel over tomorrow,"All right, here's what I think you ought to do with Bob's care. Here are the numbers. Who does this? Good luck." Right?
Rob:Sure, sure. So is there anything else that you wanted to talk with your listeners about in terms of transitions, whether they be professional, personal, some words of guidance, some words of warning?
Lu::Um, transitions ARE your life. They're not something you just try to get through. I actually think there where the meat is. Really, It's the changes. It's facing those things that either you're trying to grow, you're facing the difficult things and you're going to become someone and that you didn't know you were, and you're going to learn something. It's not something to just say,"Gee, I hope they don't happen." They happen all the time. You need to lean in to whatever it is that, that transition is. I think that's especially important with something like Alzheimer's where you don't... People, they want to deny it first. Okay, go through that, that stage. But you're losing the ability to live your life. If you're just trying to ignore it, you need to figure out what you've got left. You know, what is the situation at hand and embrace it and go,"okay, so now what do I do? What does that mean?" I just think that's really, really important.
:Remove those expectations. That doesn't mean you don't plan. I think you still plan. Like I'm planning to go to Italy in two weeks. I don't know if I'm going to make it. But I'm going to plan and I'm going to enjoy that. But I'm not going to hold fast to that. It's going to happen, whatever happens. And the last thing is, you're not trapped. In your job, in your situation. Bob gave me a great card once and it was this picture of a paint can in the corner and it was painted all around."If you feel you've painted yourself into a corner..." And you open the card, it says,"just remember, paint dries."[Well said.] Move on. You can figure out a way out. Being trapped to me is the worst experience, feeling that I'm going have to stay in this job for 30 years? My husband is going to leave me and there's nothing left? Those are horrible places to stay. You can figure out some way to change it. And mostly, first of all, it's in your attitude. And then once you get that moving, you'll probably figure out some things to do with it too.
Rob::Great. Great. Luanne, thanks so much for sharing a part of your life's journey with us. Both the joys and some of the sadness and disappointments. Luanne Bole-Becker: entrepreneur, artist, mother, caregiver, funny person. Roles, both planned and unplanned. This is your guest host, Rob Certner, thanking you and wishing you all a wonderful day.
Lu::Thank you.
:You've been listening to"Passing through Life," a show that explores how people get through major life changes. If you've enjoyed this podcast, please leave a wonderful review in Apple podcasts. That will help new listeners know more what to expect. And you can email me at passingthroughlifepodcast@gmail.com. Feel free to comment about this show or suggest people and topics for future episodes. I'm Luanne Bole-Becker. Thanks again for joining us.