Love Conquers Alz
Love Conquers Alz
MARTIN J. SCHREIBER: My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver
What better way to celebrate our 100th episode than with an interview that truly reflects the definition and the title of our show: Love Conquers Alz. Former Wisconsin Gov. Martin J. Schreiber is an award-winning crusader for Alzheimer's caregivers and persons with dementia and author of the best selling novel, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver.
Since 2016, Marty has been campaigning unlike anything he experienced while in office. Rather than seeking votes, Marty now works to recognize and support Alzheimer’s caregivers – an unpaid workforce that now exceeds 16 million people nationwide. Schreiber's goal for caregivers (whom he calls heroes) is that they learn, cope, survive and even thrive during their difficult journey. All things that Marty learned caring for his beloved wife, Elaine.
Imagine your spouse falling in love with you over and over again. Romantic, right? But what if they kept falling in love with you because every morning they woke up they’d forget who you were? The love story of Marty and his wife Elaine that began in the 1950s when they were high school freshmen began to take the cruelest of twists when Elaine, diagnosed with Alzheimer's, gradually transformed from the woman who had gracefully entertained in the Executive Residence to one who sometimes no longer recognized Marty as her husband. Yet, the two still found moments of joy which Marty lovingly talks about in his acclaimed My Two Elaines.
We share insights from "My Two Elaines," a poignant memoir that highlights the emotional journey from partner to caregiver, offering practical advice on therapeutic fibbing and redirection. The episode underscores the importance of male caregivers seeking help and stepping away from outdated stereotypes, as we discuss the necessity of systemic reform in care facilities.
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Hi, this is Don Priest, co-host of Love Conquers Alls. Welcome to Season 10, episode 100. On behalf of Susie and I, we'd like to thank all of our amazing guests and for everyone who watches, listens and supports Love Conquers Alls. Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear, and to date there's no cure. So until there is, we continue to fight with the most powerful tool in our arsenal Love. This is Love Conquers Alls, a real and really positive podcast that takes a deep dive into everything Alzheimer's the good, the bad and everything in between. And now here are your hosts, suzy Singer-Carter and me, don Preece.
Speaker 3:Hello everybody, I am Suzy Singer-Carter.
Speaker 1:And I'm Don Preece, and this is Love Conquers Alls. Hello, susan.
Speaker 3:Hi Donald, how are you?
Speaker 1:I'm swell and yourself.
Speaker 3:Good, I'm good.
Speaker 1:I'm excellent Susie. If you don't know Susie, she is known for many things, but one of the things she's known for is her wearing of hats. She is a chapeau master. She has a different hat every day, and today she has a hat that is new. And why don't you? Why don't you explain to us what that hat is?
Speaker 1:well, I'm very proud of this hat because it's it says here don read it for me because it's backwards, it's it says roar and that's r-o-a-r, and that is that stands for respect, outreach, advocacy, and Advocacy and Reform for Nursing Homes. And now that I've read that to you, why don't you explain why you're wearing that hat?
Speaker 3:I will. I'm going to do that. So ROAR is really the name of our grassroots movement that goes along with our documentary no Country for Old People. And we've just decided that this is the name of our movement and we feel like it's very proactive and energetic because we're roaring for change, we're roaring for reform in the nursing homes and we have an interview later on about the documentary. So I had this hat made up yesterday with our new logo and I'm very proud of it, and one of our media experts, who we were just talking to, thought it was great, so we feel good about it. Right, don? Yes?
Speaker 1:absolutely. And yeah, I mean, we've been banting about names for months now and this one just feels right because it really is saying what we have to do as a collective, and that is to use our voices and make a loud sound. So good on us.
Speaker 3:So, yeah, good on everybody. And if you're interested in being a part of ROAR and roaring along with us like tigers, then please go to our website for the documentary, which is NoCountryForOldPeoplecom, and there is a movement tab that you can go to and sign up to be a part of it, because we need more help than we can imagine on this, especially now in our political climate. It's really there's no better time than now to really coalesce and make change, and it's important because our, our voices as the, as a public, as a collective, actually it's very powerful and we can make change. Change and it's been. You know, part of our part of our history is is making change. That starts with just a few people, so come on and join us.
Speaker 1:Right, absolutely.
Speaker 3:Yeah, so what else is new? Let's talk about something fun.
Speaker 1:Oh well, you. This last weekend you have some little grandkids who got to do something for the first time. Yes, and yeah, we went to Disneyland.
Speaker 3:Yeah.
Speaker 1:And that was great.
Speaker 3:It was actually a really great day it was a really great day, but can we talk about the price of Disneyland now? What?
Speaker 4:on earth.
Speaker 1:I'd rather not the happiest place on earth is the most expensive place on earth now. Oh my gosh, it's insane.
Speaker 3:I mean it's $200 a ticket folks and that's not including to walk through the gates. A bottle of water is $9 and everything else is up more than that.
Speaker 1:Parking $35. It's the most expensive place.
Speaker 3:Yeah, it's the most expensive place on earth and yet it's crowded to the gills, which says something about I don't know. What does it say? I have no idea.
Speaker 1:It say I have no idea. It says all I know is that people don't care about how much people don't like disneyland. Despite that, it was a great time and uh, and to see your little grandbabies. Just, you know, their eyes are constantly lighting up everywhere they look and everything, and, yeah, two years old and five years old and they were in.
Speaker 3:Yeah, it's really fun to go, so, yeah, that's the way to do it. And and then go home and take a lot of Advil, because I was carrying a two-year-old for 12 hours and I didn't realize I mean, I work out every day but I was like, oh my god, I actually hurt, this hurts.
Speaker 1:So Susie was toting around 28 pounds with one arm the whole time. You know just like 28 pounds, just right there, and it doesn't. And it and it moves.
Speaker 3:It's not like it's just still yeah. But, I don't. But anyway, you know now, now I keep forgetting that I'm not 17 anymore. I don't understand. I keep thinking I can do whatever I used to do. But I pretty much I'm doing OK. But you know what, donald?
Speaker 1:Yes, I do.
Speaker 3:We have such a fun, we have a great guest today, and you know why we do. Well, I really like this person because so many people in our community told me you really need to speak to Marty, this man that you're going to introduce properly. You really need to speak to Marty, this man that you're going to introduce properly because you two are very similar. You're very kismet, you know, whatever it is, whatever that word I'm trying to think of is, but that we have very similar stories with different players, that's all you know, and that we approached our journey so similarly and indeed we did, and so it's interesting, though, to hear it from a male perspective. So let's just get to the interview and Don do a beautiful introduction.
Speaker 1:Why I think I'll do that. Former Wisconsin Governor Martin J Schreiber is an award-winning crusader for Alzheimer's caregivers and persons with dementia, reaching audiences nationwide at live events and via media. He uses humor and compassion to share lessons from his ongoing decade-plus journey as a caregiver for the love of his life, his wife Elaine. The author of my Two Elanes Learning, coping and Surviving as an Alzheimer's Caregiver. He details his experiences in caring for his beloved wife. It is a love story that began in the 50s as high school sweethearts and takes us through the cruel twists of Alzheimer's while still finding moments of joy through activities such as music and simply holding hands. Since her passing in 2022, marty continues to recognize and support Alzheimer's caregivers, an unpaid workforce that now exceeds 16 million people nationwide. His goal for caregivers, whom he calls heroes, is that they learn, cope, survive and even thrive during their difficult journey. We are honored to have him here with us today, so let's not take another moment and say hello to Marty Schreiber. Hello, marty.
Speaker 4:Well, hi Don Hi Susie Well thank you for the kind introduction and a salute to two of you for what you are doing to better bring attention to and focus on this whole business of caregiving, and and and and roar. Oh, my goodness, when I heard what you were talking about with roar, uh, how I sign me up. Uh, you know, I don't even I'll go to your website, but sign me up. Um, I'll tell you, um, with that profit motive that there is for senior care, it's very difficult to get the degree of training, the quality of workers, the quality of food, the quality of the programming and so forth that they're talking about and what happens.
Speaker 4:And I don't get into this world too heavily, but periodically people send me manuscripts of their experiences as a caregiver.
Speaker 4:Periodically people send me manuscripts of their experiences as a caregiver. Oh my gosh, what people have gone through in assisted living, memory care, even in hospice, even an area in homes which claim to be the absolute best, and so forth. There still is such a great challenge here to get the kind of quality staff that that allows a caregiver or a loved one to walk away in the evening from their, from their loved one. So very difficult to walk away with the comfort of knowing that everything is going to be fine and what you are really doing is not only helping the person who is in the bed in in the nursing home, but what you are doing is giving comfort, aiding a caregiver, a loved one who has to leave their special person, has to leave them not knowing if they're going to be getting the kind of quality attention, even their amount of attention, that should be given. So thank you for that and I'm, I'm, I salute you, thank you, thank you. I.
Speaker 3:I. I thank you for saying that, and you're so right, because everything you said reflected what happened with my mom and I two years ago, and and that's why we're doing the documentary, that's why we're creating the movement, because even in a five-star facility here in Los Angeles and even with a staunch advocate like me caring for someone who I love dearly, I could not get the kind of care that my mom deserved. And so I realized, you know, as it was going on, and I did my homework and realized that it's not my mom's story, it's everybody's story and we really need to change it. It's just too profit-driven, like you said, and it's only going to get worse.
Speaker 4:Well, as the population expands, there are really no standards, no Assisted living, memory care. What does that offer? What can you be assured of getting, and so forth. Well, there is no assurance of getting anything, and so, by the grace of God, hopefully, people can find a place at this moment in time that's going to give them that comfort of knowing their loved one is well taken care of.
Speaker 1:Hopefully, if not, they've got to fight like people you know and those places do exist, but they are the minority, and it's great when you see a facility that does it right, because you know that it's a possibility, it's not impossible and it becomes the model for what can be. But until the system changes and until and you, as a former, you know, governor, you know, you are, you are, you know, you know the politics and how politics plays into this, especially with the nursing home lobby, when we're fighting against that, and you know, so you've, you've seen it, I'm sure, from both ends.
Speaker 4:Well, we're fighting money. You know we're fighting the profit movement and you know you have our elderly citizens and you put them into assisted living, memory care or into a nursing home, and the goal should be quality care. That's not the goal. The goal is to make money for the investors. Yes, wait a minute. That's all topsy-turvy, but so it's going to be a constant. So I urge everyone to sign up for ROAR and let's do the roaring and let's make sure that we are able to. Now individuals, too, can also look in their home state, because there are many times state regulations that can come into play that will help some of this. But so my my hats off to the two of you for what you're doing.
Speaker 3:Thank you so much.
Speaker 4:Every caregiver in the world owes you a debt of gratitude, and every person who's in a home owes you a debt of gratitude. My gosh so bless your heart.
Speaker 3:Thank you so much yeah thank you.
Speaker 3:Well, let's talk about your, your journey and how you caught here, because you know and people ask me this all the time like you went through such a long journey with your mom. Why are you retelling the story? Why are you doing? You know, are because many people don't, many people finish the chapter, chapter and move on and and because, even if it's, even if it's a lovely journey, it it's. It's draining at best it's, it's heartbreaking at at best it's bittersweet, and and. But I, but you know you, you decided to share your story. So why don't we talk about how that happened and a little bit of your journey, of how you got to my Two Elanes? Because I love the title so much, because there's definitely my Two Mommies, I had my Two Mommies too. I get it. It makes so much sense.
Speaker 4:Well, with my Two Elanes, of course, the wonderful girl I met when I was a teenager, in high school, and was my wife and my partner, my companion, my friend, everything you could ever ask. Then there was a second Elaine, and that was the one who, at the age of in her mid-60s, began to lose her memory. And so in that journey, which was like almost 18 years, in that journey I found out a few things that really made a difference. One of them is, if Alzheimer's is bad, ignorance of the disease is worse. And I realized that when the doctor, when making the diagnosis, he said there's four things that we should be doing Numenda and Aricep, which are drugs which I took, and they may be late, I don't know, but we did it. And then socialization, and make sure we do that. And then a glass of red wine every evening and walking, which is the best exercise for the brain. That is all the doctor told me. And so when I say there's one thing worse than Alzheimer's, it's ignorance of the disease.
Speaker 4:I want the medical profession to understand that when there is this diagnosis, there are two patients. So, depending upon which studies you look at, 30 to 40% of caregivers die before their loved one because of stress-related illness. They say that caregivers have a 60% higher death rate than non-caregivers. So, within that framework, then there are two patients and now, okay, so now we are two patients. How do we help the caregiver? Well, we want to give them information, and one of the things that I had a difficult time doing, but once I understood it, made all the difference in the world, and that was joining Elaine where she was at. As long as I said, elaine, it didn't happen on a Thursday, it happened on a Friday, elaine, it wasn't the Jones it as long as I said.
Speaker 4:Elaine, it didn't happen on a Thursday, it happened on a Friday. Elaine, it wasn't the Jones. As long as I tried to keep her in my world, our experience and our joint frustration and the discouragement and the anxiety was just so heightened and once I began to understand that by joining her world, her life can be better, and also so my life can be better too.
Speaker 4:And wow, what a difference that sort of made. And so I'm beginning to realize this. And then I have a very good friend whose wife had early onset and he would argue with her about whether she should have on another sweater. Wait a minute, we need to join their world. Just simple, yes, Simple as that. And so that's what got me into it, and it pink.
Speaker 4:First of all, Susie, you and I know what it's like to go through and see our dear loved one lose their memory through, and see our dear loved one lose their memory, and see how they lose then every one of their health faculties, and so how it goes and how painful that is. And then to know that, well, there are things that we can do in looking for moments of joy. And so when I say moments of joy, for a moment I said the doctor said that you know a glass of red wine every evening and also going for a walk. Well, Elaine got four weeks ahead with a glass of red wine every evening and we got three weeks behind in the walking, but the point is when we would go for a walk because it's my world. She'd say, oh, look at that beautiful flower on elaine. I had a half an hour.
Speaker 4:That was the my time frame for a walk so, okay, we don't have time to look at the bird? No, we don't. You know, we're caregivers. If we can take a time and a moment to understand that there can be moments of joy, then there's one other point, uh, and that is that, as of this moment, there's not really a realizable kind of solution to this Alzheimer's not practical. That's the same way it was 20 years ago when Elaine was first diagnosed.
Speaker 3:And so we sort of learned.
Speaker 4:We can't fight this disease head on. So that's very discouraging, that's horrible. But what we can do is we can determine and fix a very realizable goal which can give us an upbeat in our heart, and that is to help our loved one live their best possible life. That is a realizable goal and that's something we can do, and we can lay down our head in the evening and say, oh my gosh, the pain is horrible, I miss my wife, but what we were able to do is help her live a good day, a good life possible so suzy started a long answer, but uh, oh gosh, you know, you know when I think about, about you going through as you did with your mom and going back to the moments that I did, so challenging, so so very difficult.
Speaker 4:And then, plus, you had to fight the, the nursing homes and so forth. The kind of care you wanted your mom to have. Anyway, I agree with you.
Speaker 3:No, I agree with everything you say resonates so deeply with me.
Speaker 3:It's one of the, it's the thing that really brings me to this, to this show. It's the thing that motivated me to do a short film about my mom, which, before the documentary with Valerie that I, you know my journey, learning to lean into my mom instead of trying to, you know, wrestle with this disease that I thought I was going to be able to cure because no one else was smart enough, but I'm going to find the cure. And then I realized that that was just, you know, uh, very lofty of me and impossible, not to mention. I just decided I'm going to lean way into my mom and, like you, not argue, not, you know and just enjoy and find those moments. She was a singer, we sang, I made her laugh, she had a great sense of humor and if I could do those, if I could make her smile and laugh and get hugs and kisses, I was a happy girl, happy camper, when you say that, I'm reminded I used to, as much as possible, have lunch with Elaine in that cafeteria, in assisted living memory care.
Speaker 4:So one day we're having lunch and she begins to cry and I said, Elaine, why are you crying? Well, she looked at me. She said, said, I'm beginning to love you more than my husband. Well, I didn't ask her what's wrong with her turkey husband. I didn't do that. But what I did do was understand and I try and point this out to caregivers what I, what I understood.
Speaker 4:Then it was not necessary for her to know my name in order for our hearts to touch, like you said, singing songs and so forth. So I began to understand that she might need not know my name, but our hearts can touch by holding hands, by giving a hug, by singing a song, by just listening to music, by being together, by giving a smile and those kinds of things. As I learned along the way, that sort of gave me some relief, like a salve, a soothing salve. That's what I want to share with other people so they can understand that there there are these operative. Yes, it's a tough, tough, tough disease, but there are these moments of joy that we can take heart from and it's really being in the moment.
Speaker 1:it's, you know it, because you have to. I, I know some people get into what you know. Know they call a loop where literally they'll say, maybe say the same exact thing over and over and over every 10 seconds With Susie's mom. I was very close with her mom, you know I was very lucky because my loop with her is she would turn to me and just say I love you and she would say that like and over again every 10 seconds. And you know, after a while, no matter what the loop is like, for us it's like, oh my God, again, again. And you have to realize that every time is the first time for them and if you can just take that and say that's their moment, let me just enjoy it, let me just be with there in that moment. That that will help you as a caregiver Instead of getting frustrated over hearing the same thing over and over. Just be in the moment every time, because for them it is the first time.
Speaker 3:Yeah, and there's also, you know, there's also technique with dealing with somebody with Alzheimer's which at the time, when she was looping what Dawn's talking about, I didn't have those techniques, techniques. But now I know that if I was to say, I know, isn't Don fantastic, mom, he's the best friend, he's the son you should have had, and then go, hey, mom, do you want a banana? I'm going to change, I'm going to redirect her and she's going to forget about the loop. But at the time we didn't know. I didn't know how I was, just like I was dog paddling, learning as I went, and as I'm sure you were too, marty.
Speaker 4:Well, I can remember once Elaine asking me how are my parents? And I said well, they're both dead. She said no, they're not, elaine. When I saw her hurt, I determined I was not going to put her through that again. So then the next time that she asked me how are my? Oh, I said your mom's doing great. I said your dad likes his sports. And I said they're really very, very they're doing well.
Speaker 4:Oh, she said that makes me feel so happy, you know well that's what I call therapeutic fibbing, therapeutic fibbing, and there I want you to know there are two things.
Speaker 4:The therapeutic fibbing number one. I tried it the first year of marriage and it doesn't work so good the first year of marriage, no. The second point, and I point this out to caregivers and I say this you may not believe this. I'm very honest with the caregivers. But I said you may not believe this. But I said if you go back to the Old Testament, when Moses was on top of the mountain bringing down the Ten Commandments, I was there and I helped him. And when he asked for it, I said Mo, what can? Don't call him Mo, don't call him Mo, he likes Moses, but anyway. So I said Moses, what?
Speaker 2:can I he?
Speaker 4:said help me carry these things down. So I carried them, we all the way down, we're perspiring, it's in the desert and so forth. People are looking at the front. Of course, there's these and don'ts and so forth, the 10 commandments. I looked and it was written in Arabic language. But I looked on the other side of those tablets and written in good American English. Therapeutic living is good Therapeutic living is advisable. Therapeutic living could make a difference in how a person is able to learn, cope and survive. Can you imagine that's right there?
Speaker 3:I had no idea, I hadn't. That's really pretty important. You look amazing for your age too. I can't believe it. Where's Mo now? Where is he? I mean Moses? Oh, I got a great year.
Speaker 4:You're perfect.
Speaker 3:So, so you know, okay. So I'm looking at my notes about you and I'm looking, I'm saying it took you more than a decade to come to these, these, uh, these epiphanies that you had, which is, you know, 10 years of of. And I'm not judging it because it took me a long time as well, but I want to hear you know, like what, what was that moment? Because I know, for me it was. I was fighting tooth and nail to keep mom in the present, where she should, where I thought she should be, but what I mean, 10 years is a long time for you to struggle through that right well, there's no what was the switch, what was the pivot?
Speaker 4:yeah, well, I wish, I wish it would have happened like a bolt out of the blue, but it it happened, a little bit at a time. I did go to counseling and I would encourage people to understand that they're going through a lot of emotions and counseling could be a very helpful situation for the process. But it just sort of came to me and I began to understand, with the counselor telling me about redirection, for example, and Elaine wants a glass of wine at 930 in the morning and no, you can't have a glass of wine at night. It's not the answer. Do you want red wine or white wine? Want to drink?
Speaker 1:with your friends.
Speaker 4:And, by the way, should we have a cup of coffee while we're trying to figure out what kind of wine we should have, and and so that pivot it and and I'll tell you what makes the pivot so hard. You do not want to leave this person who once was okay and your intellect can tell you very clearly, join the world of this person who now is. Emotionally. That's very hard and so it makes all that more difficult for the caregiver and again, that's why I I wrote the book. I wanted to try and help the caregiver better understand that, that that by letting go it can be sort of an entrance into a new type of positive life. Uh, for, for both the caregiver and the person who is ill and gosh, and that's where I get. If Alzheimer's is bad, ignorance of the disease is worse.
Speaker 4:For a caregiver to understand from the beginning the importance of joining the world of the person who now is what a difference that would make.
Speaker 3:Yeah, it can save you so much stress and angst. I think what's really unique about your story and telling your story because I mean, we've interviewed so many people and very few male caregivers and also from a marriage, that kind of relationship as opposed to a parent and child relationship, which is so different, of course, my loss is oh, where's my mommy? That's going to be. Love me and, and you know, no one loves you like your mom and you know we particularly had a great relationship. So you know she was very unique and you know, one of a kind and I just missed her, missed her, you know, a thousand times over. But I always wonder what it's like as a spouse and you've got that, you know that dynamic that you know you once had this kind of relationship and that must be so difficult day in and day out of this change in your relationship, because now you're really the parent as opposed to the husband.
Speaker 4:Yes, a couple of things. As the spouse, particularly as a male caregiver, one of the things I want to try and have male caregivers understand, and that is that it is a sign of courage and not giving up to ask for help. And so, as a male caregiver me, we men, we think we don't have to ask for directions any place. We know we can do it all of ourselves. And we, we have to get to a point of understanding that if we're surrounded by an enemy and there's no hope of of, of of survival, are we just going to sit there or are we going to go for help? And so going for help means we're not, uh, giving up. It also is a sign of courage. Going for help means we're not giving up. It also is a sign of courage. And so, as a male caregiver, we well, it's different because of our arrogance.
Speaker 4:And just a quick story. So I go to counseling and I say to the counselor I just cannot see putting Elaine into assisted living, memory care, I can't see putting her into a nursing home. And she says you're not putting Elaine anyplace. Well, I said, what do you mean? Well, what you are doing is you're giving her an opportunity to be who she is now? Can Marty Shriver's 24-7 nursing home care take? Absolutely not, and so the point of the matter is I, selfishly, was in this battle with Alzheimer's.
Speaker 2:I was going to take it for the wife.
Speaker 4:I was not thinking about what is in the best interest of Elaine, because I was arrogant and selfish and probably lacking of a hero status. A hero status would have said, hey, oh, you know, we've got to do something better, we've got to make an improvement. I'm going to do this. But no, it was selfishness and arrogance and finding when I got that into my head, that this is not my battle Again. Going back, we can't beat this disease, but we can help our loved one live their best life possible, and that made a big difference for me.
Speaker 1:We'll be right back.
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Speaker 3:As far as being a spouse, you're losing two aspects of a relationship. You have the interpersonal relationship of a spouse and then you have this person, that's just someone that you dearly love. So now there's two holes in your heart, right, and that's a whole other aspect that I didn't have to. You know, I've been through a divorce, so it's the same as divorcing, like I didn't have my husband anymore, so you didn't have your wife and you didn't have your best friend. So that's two things that you lost, because those fulfill those fulfill different, different needs and are a different, different aspects of your, of your soul. So I, just, I, just I. I salute you for staying there and being such a a pillar for her. And yeah, listen, it's not, I get that, it's selfish.
Speaker 3:I was selfish too. I mean I wanted my mom to stay mom, but I have to say that every once in a while and it's in my film about her is that when the proverbial poop hit the fan, sometimes mom would come out and out of nowhere, and mom would be there, the mom that I knew, who would say I told you go, look in the mirror, you're fantastic, thank God for who you are, and that's it, you know, and my mom came, she became mommy for the second, and so, you know, I thought okay, well, there's the gifts. If we are patient and if we're there and if we listen and we give them space, sometimes they surprise you.
Speaker 4:I sort of had the same experience you did, but in a different way.
Speaker 4:I'm about ready to go to print with the book telling my story, marty Shriver's story.
Speaker 4:Well, I found a series of notes and journals that Elaine had been keeping since her date of diagnosis and I went through those notes and journals and I want you to know we had prayed together and we had cried together, but never did I get an insight into the degree of courage it takes to be diagnosed with this illness and then go forward, but also, susie, the insight that those notes gave me. By the way, each chapter of the book begins with one of Elaine's notes. They help the caregiver or the reader understand what is going on in the mind of a person who is in the journey of Alzheimer's. And so what I found out in those notes is how much she loved me. And I found out she told not only how much she loved me but how much she depended upon me for going forward. And yes, it was not a verbal kind of statement, but it was that in writing which gave me a comforting understanding that this woman who is disappearing has always given me that kind of love.
Speaker 4:And even though she was disappearing, disappearing, that love expression was still there and still there and you know, and and I sit here and you and I are talking I want caregivers to understand. What we are talking about is a lot of pain and a lot of hardship, but please take heart. You've got to take heart in the fact that there's hope. You've got to take a grip, a hold of the fact that there's hope. You've got to grip a hold of the fact that we can work to help our loved one's life be made better. And also we can understand that in this process you're probably going to meet what I call canes, and so I have spinal stenosis and I have to walk with a cane many times. What does a cane do? Well, it gives me balance, it gives me stability, it gives me confidence. It gives me confidence, it helps me move forward. And what could happen in the life of a caregiver? On this journey that you will find canes, you will find wonderful, beautiful people who are going to be so helpful at a moment in time. And that's another thing we've got to do as it relates to roar, and that's another thing we've got to do as it relates to war.
Speaker 4:You know, I say that Alzheimer's is not a chicken casserole disease and so, hypothetically speaking, I break a leg, you bring me chicken casserole. I have open heart surgery. I can't get around chicken casserole. My wife has dementia. People don't understand this disease, they don't know what to do and they stay away. And now the caregiver is not only feeling abandoned, isolated by friends of maybe 25, 30 years. And so we've got to help people understand that Alzheimer's is a chicken casserole disease from the standpoint of being attentive and caring to both the person on the journey and also the caregiver. And so it's a challenge because it's a stigma to many people. They don't know how to handle it. And that's not to say I'm not to blame. I guess writing the book and so forth was sort of a way of trying to make retribution for the things I could have done better, writing the book, trying to make sure I could help other people not go through the same kind of challenges that I went through, sometimes needlessly.
Speaker 1:And that's so important because the caregiver as you touched on before, the caregiver is the other, not patient, but the other person that is involved and I think that a lot of times the caregiver. Did you ever feel moments of guilt when you said I need to do something for myself, I need a break, I need you know, because you feel guilty? It's like how can I not be there 24, seven, seven days a week? If I take an hour from myself, I'm not doing you feel guilty. It's like how can I not be there 24-7, seven days a week? If I take an hour from myself, I'm not doing my job and that's actually completely the opposite of what it should be Counterintuitive, yeah you need to take care of yourself or you can't be that great caregiver.
Speaker 1:Did that happen to you?
Speaker 4:Don, you're right on target. It is that guilt and because the disease is progressive. No matter what I did today, I think I've got it mastered and I wake up tomorrow and it's a whole new challenge. Now, what am I doing wrong? Here's what happens.
Speaker 4:So I spend more time, and what happens is maybe I don't now get the exercise I should be getting and I don't get the socialization that I should be getting, and I may not be eating right, and I may not be eating right and I may not be sleeping right, and all of a sudden, these chemicals are building up in my body and I become one angry person, I become irrationally irritable, my health could become at stake, and that's why we talked about 30 to 40 percent of these caregiver dying before their loved ones, and and, and and. So caregivers, please understand that having all of this love for your loved one and not take care of yourself, that's, that's just absolutely counterproductive to everything that you feel, and and want to be and experience. It's absolutely against all of that, and so you've got to take care of yourself. And here's another point, don. So I've not only become irrationally irritable, but also I was getting to the point of 6 o'clock in the evening and one beep eater's martini helped pretty good because I knew I had made the day.
Speaker 4:Well then, maybe 6 o'clock I would be another. I think I deserve another one because, well then, maybe six o'clock I would be another. We really. I think I deserve another one because not only you know. And then and so, all of a sudden, I got involved in what I call the caregiver's poison, and that's alcohol, and so what I finally began to understand. My children had a, like a, a confrontation what do they call it? Where they sit you down and talk to you.
Speaker 3:Intervention an intervention.
Speaker 4:They had an intervention with me and they basically said dad, if you don't do something, you're going to be dead before mom. We don't want to lose both parents. And so what I began and to understand is, yes, I love my wife so dearly, but, by the same token, I have children and I have grandchildren and maybe I have friends that can be, that I can be of help to. I can continue to be a meaningful person in the world. And yes, this is all consuming, but by the same token, there are other things that I can be doing in life to carry on what elaine and fulfill your own, your, you.
Speaker 3:You know you were self-medicating and you know, for me I don't. I, I I'm a social drinker, so that wasn't my thing, but I remember like trying. You know, being an A-type personality, my mom was living with me for a year after my divorce and after my stepdad died and I didn't want her to be alone in a facility. And you know the cortisol you're talking about all these, all this. You know chemicals. I had so much cortisol and I wasn't sleeping at all because I would. I'd be working. You know, I'm a filmmaker, so I'm I'm working all through the night and I'm thinking I'm a, oh, I can handle this. And you know, I've never, I've never gained weight in my life and I'm like suddenly 20 pounds heavier than I've ever been Because I'm not eating. It's just that I'm not sleeping, I'm not taking care of myself and the cortisol is raging right. And the doctor told me she was like your cortisol is off the charts. You have to sleep, girl.
Speaker 4:You have to sleep and you really have to take care of yourself too. To reaffirm, suzy, what you're saying about cortisol one of the one of the uh results of too much cortisol dementia. You know, oh great, you know, wow, wow, and I think it's that we have to take that makes sense Wow, wow, wow, wow, wow, wow, wow Wow. Wow, wow, wow, wow, wow, wow, wow, wow, wow, wow, wow, wow.
Speaker 3:Wow, wow, wow, wow, wow, wow, wow, wow, wow, wow, wow.
Speaker 1:Wow more by not taking care of yourself and doing it without guilt and doing it with you know, with just that's. Yeah, no, I'm everything I do for myself I'm doing for them too.
Speaker 3:Yeah, yeah, and it's also, you know, at least for me, and I know everyone's situation is different and some people have a contentious relationship with the person they're caring for. They had it and maybe it's better now. But you know, and I and this is also seen in my short film but it was very profound to me that my mom was having a in the middle of the night, was having a, you know, kind of a, an out-of-body experience, you know, wanted to go get out of there. She thought I stole her baby, da-da-da-da-da.
Speaker 3:And I'm following her down the stairs and it's very, very cinematic in real life, and the moonlight's coming in through the window and suddenly I say Mommy, stop running. And she turns around and goes oh my God, you're my baby, you're my baby. And she looked at me and she said you got to put me in a home, you got to live your life. And I said oh, you're going, don't trust me. And I said not. Yet we made a joke, right and so, but you know so deep you know her feeling was like and I know that the, that, the, the, the mom without Alzheimer's would have said Susie, what are you doing? I'm okay. You know you have to have a life, and I tried to keep that in the back of my mind all the time so that I didn't feel guilty, because I don't think most people who are healthy emotionally would want that for you as their caregiver, don't you agree?
Speaker 1:I'm sure Elaine did not want you to be unhappy and suffering. That's the last thing she would want. No, so it's totally counterintuitive to what that person would want in your relationship what that person would want in your relationship.
Speaker 4:She said in one of her notes Marty, I need to take care of yourself as well as for me, and so she realized that I needed to go forward. But I think even the caregiver would understand that their own self-interest I mean not the caregiver but the person on the Alzheimer's journey would understand out of their own self-interest I mean not the caregiver but the person on the Alzheimer's journey would understand out of their own self-interest, the caregiver has to be healthy and take that time off, that respite that, respite time and so forth. I do believe that I do too, yeah.
Speaker 3:So what I know? Yeah, first of all, thank you for reminding me of the way that you started each chapter. This book is so good. You really ought to everyone ought to read it, because it really is written in such a personal and you're very, you're very transparent about the mistakes that you felt you made. I'm not saying that you, I don't, I don't think I think you did a wonderful job, mistakes and all, because I think we all make mistakes, but you're very, you're very, open about it and you're very, um, uh, you know.
Speaker 3:So, you, you, you very, you were very contemplative about how, how this journey was and and I think that that's important, without being exploitive, and I and I really respect that about the way that you told the story and I and I do think that, because you are a male of the male, of the male gender, that it's so important though, because a lot of male caregivers don't have people to talk to or commiserate or under you know, and they're not supported, and I just think that, for that alone, your, your story is just massively, um, impactful and and important and needs to be out there, and I'm really happy to, you know, amplify it for, along with you, because I just think that you know someone. I know. Don is a very tender, tender hearted person. He's been my best friend forever. And you know people.
Speaker 3:Some often think that men are just you know, they can just take it and you know it's, and they, they just. No, that's not true. They, they, you know men are very sensitive and also need the support and also have different ways of of viewing. So it's so. What you're doing is such a great service for other men who are going through similar things.
Speaker 4:Yeah, thank you, thank you very much for that.
Speaker 4:There's one other aspect of this that we men don't understand and I think all caregivers, men or women and that is that, as we see, our loved ones sort of disappear a little bit every day. I had a friend who retired and he had dinner one night and he died of a massive heart attack. Snap of a finger gone, and it was tragic. So quick there was a funeral and people came by to express their condolences and there was closure. As tough as sudden as this was, there was closure.
Speaker 4:A caregiver never gets closure. A caregiver sees their loved one maybe die just a little bit every day and because of not getting closure, we also go through either acknowledged or unacknowledged grieving, and so that is just something that is added on to this pile of emotions that are coming by. And I wanted to be very transparent in my book. I wanted people to know that it's okay to cry. I wanted people to know that to share your heart with somebody because of the great pain, that's okay. In fact, we're human beings and we have the ability to share and to love and even to hope together. No-transcript Just a little bit easier.
Speaker 3:If you don't, I agree with you 100%, and not only the caregivers but the whole world needs a better education on this kind of disease, since it is so prevalent and too large of a majority of even our in our health care system do not understand the disease and there's a stigma that it occurs in our health care system and that's why you know that's part of our, of our reform is to educate our, our care, our providers, to understand the difference between someone with dementia without dementia, because it is massively different. It is a not a one size fits all and if you don't understand the disease, you're going to treat it you know incorrectly and and that's so important, so important.
Speaker 3:Can I, can I touch on one other thing with you? And you can tell me no if you don't want to? Um, lost our significant love. Love, well, not my significant other, but our lover, our loved ones in 2022, correct? Yes, there's a lot of talk about anticipatory grief. You just touched on it a little bit and you know, for me, my experience with watching my mom crossing her over the bridge.
Speaker 3:I thought it was going to be something that I wasn't going to be able to accept and take. You know, as a little girl watching their mom leave, mom, leave this earth, I, my mom and I used to joke we're not leaving, that's for other people. We don't die, you know. We just we'd make a joke about it and and but, and I told my mom the night before she died you're teaching me how to live and now you're teaching me how to die. You, you know she did the best, she was a great mom and um, and I cried when she first died. But then I still haven't grieved the way I thought I would and I'm just sharing that openly because I don't know if I'm afraid to. I don't know if I've grieved. I grieved for 16 years, because she had alzheimer's for 16 years and maybe you know I I I did it all in those in that time, um, but I'm wondering how that was for you when Elaine finally left the earth. How did you deal with that?
Speaker 4:Well, I think you sort of hit it. As far as I look back, I think I grieved a little bit every day, and by the time she passed away, maybe I was almost grieved out, although there were tears and there was, you know great sadness, but another factor that came into play along with that, and that is I could not have asked her to go on for another moment, based on her physical incapabilities.
Speaker 4:You know he was just, you know she, he was just. I could not ask her at all. And and so because I I knew that maybe the best thing for her was to pass, and because I had that, you know, that anticipatory or unacknowledged grieving over that period of time, um, but it, like you, though I still haven't gotten over it, she's still so forth forthright in my memories and in my thoughts, and and, um, I'm grateful that I have this period of time to spend more time with the kids and the grandkids, as she would have wanted, as she would have nurtured them. And so, yeah, that whole business of grieving.
Speaker 4:They say that grieving is a tribute to the one who passed, and so I think that's what you and I did. We gave that tribute to our loved one, and somehow, you know to know what, here, your mom and my wife would not want us to continue to sit at the gravesite and cry. I think what they would say is look, I want you to get out and make sure that we can make things better in nursing homes and make sure that people can feel comfortable when they leave their loved one at night, that they're getting good care. I think that's what they would have liked to have said and would have said and probably did say and you're making them very proud and you're in their honor.
Speaker 3:Yeah, I agree. Thank you Back at you. Yeah, I agree.
Speaker 1:So going just backtracking just a little bit, and we were talking about ignorance and the lack of education that we have. I mean, realistically, if you don't know anyone in your life who has Alzheimer's, you're not going to sit there and go on and study about it before it's even part of your life. So most people, the time they start learning about it is when it happens when somebody in their life, it happens or it happens to them, whatever. So you know, where do we get that education? What are the steps you would recommend taking to get that knowledge and to you know, so you're not in the dark and it doesn't take you 10 years to figure it all out.
Speaker 4:I would try and get a hold of a book, something like my book, whole of a book, something like my book, in other words, something that's going to give a realistic but not, hopefully, a dire statistic, something that just sort of presents some of an understanding of what the process is going to be like as your loved one is on this Alzheimer's journey.
Speaker 4:I think that would be one of the first things and it would be my hope that when there would be a diagnosis like that, that the doctor would in fact have people get in touch with maybe the Alzheimer's Association or with some other association who is equipped to give them that basic information.
Speaker 4:I think that becomes so important because you don't know how to handle it, you don't know what to do, and to get some insight into what that process is going to be like I think makes all the difference in the world. That's really the basic beginning. Then, I think, from there to try and, like a tossing a pebble in a pond, to try and make those loved ones around you sort of understand better and clearer what is happening. You don't want to jump out to the. You know the great, great uncle who never you see again, you talk with. You know, children and siblings and so forth, to help give them a better understanding. I think within that framework, there will be a molding of hopefully, by the grace of God, a molding of comfort that's going to help you sort of through this by understanding the disease and not getting in battle with fighting it.
Speaker 3:Yeah, I think we also have to know at this point in time that, like you said, many of the inner circle do fade away because people don't understand it or they're fearful of it, or they just don't have the patience for it. Whatever the case may be, there's still that stigma and you had mentioned it. It happened with my mom, even with family members, the close, our close circle people just fell off the face of the earth and and and dismissed it. As you know well, she doesn't remember. So what's the point? And? And it's hard to educate everybody. It's hard to educate them while you're still educating yourself. So I would you say, I mean, I say this, I think you have to just, instead of getting angry at them and resenting your support or lack of support system, you maybe just look at them with understanding and understand that some people just aren't as strong as you and they can't deal with it. They can't handle it and so there's nothing we can do about that. We can't change them.
Speaker 4:Yeah, susie, that's such a great point. Everybody handles grief their own way, and maybe it's grief, or maybe it's just that not being knowledgeable about what's going on or being fearful, and there is so much energy that is required of a caregiver to keep things on path, that when I began to get angry and upset with the people who should have been doing something more and could have been doing something more why not, are they doing something more that it began to sap my energy. And I sort of had to let go of that.
Speaker 2:And.
Speaker 4:I would encourage other caregivers to understand that everybody handles this thing a different way and, yes, we can feel chagrined and we can feel sad, but you've got to just step back and understand what it is and then focus on how we can make it better. And it's not going to make it better by ruminating in our own mind about it, because it's just too and there's not enough time in a day for that.
Speaker 3:There's not enough time. Yeah, 100%. You have to pick your battles, and when you're a caregiver, you have too many battles to choose from, so that should be the last priority. That you have too many battles to choose from, so that that should be the last priority that you have. If that, if it's all a priority, you know and that comes down to a little bit of the reform we're trying to do is to really educate the public because, you know it, the longer you live, the chances are of developing some form of dementia is, you know, are very high, and so why aren't so? Why aren't we taught more about that throughout our lives? And it's very important that we understand how it manifests, what it means and how to deal with it, so that we aren't abandoning our loved ones and our loved ones' caregivers. We're losing the sense of community.
Speaker 4:And maybe thus as it was, and maybe thus as it shall always be, unless we do something about it.
Speaker 3:Yes.
Speaker 4:Unless which we can.
Speaker 1:Yeah, yes, agreed.
Speaker 1:And sometimes isn't it possible that you know somebody who doesn't want to be there. It's like you're not asking them to come over and help you. You know, sit and do that. But you can maybe ask somebody hey, you know what, instead of you having to go out and get something, can you possibly pick hey, while you're out, can you pick this up for me? Just little tiny things that make your life a little bit easier, and they don't have to get fully involved, but they can at least be part of your support system. And, is you know, is that something you found that you were able to do?
Speaker 4:The basic question is how can you best help a caregiver and how can a caregiver best help themselves? As it relates to friends, first of all, if you want to help a caregiver, my advice is one acknowledge that you understand what they're going through. Acknowledge that you understand what they're going through, and I don't know of any more kind thing you can do for a caregiver than to just relate and acknowledge the challenge. After that, then you don't say call me if I can help you, because caregivers don't do that. Then what you could say is can I cut the grass, or can I take the dog for a walk, or can I go to the store for you, or can I come and sit with Mary or whoever it is, for a bit of time with Elaine and while you go out, and so forth. But specific acts. And then also for caregivers to understand and I want to drive this home again to ask for help means you're not giving up, and so to ask for help from somebody means that you're in the battle. You're in the battle to fight it, and because of you being in the battle, not giving up, you are going to be asking friends to help and to do special kinds of things, and that, in turn, leads to what we talked about before, and that is now you're beginning to develop canes that can help you through this, to give you that balance and to give you the courage to move forward, and so forth.
Speaker 4:And so, you know, I sometimes sit and think, as a caregiver, they didn't do this, they didn't do that. But I had a responsibility too, and that responsibility was to develop canes to help me. My responsibility was to have people, you know, get better understanding of what the challenge is. And it can't do it by me hiding in a cocoon. It can happen by me saying would you please do this, would you please stop by? And so forth. And so now, beginning to develop a community of interest around me, it would be pretty important and is very important and very helpful I love that.
Speaker 3:That's exactly right. It's like with any relationship, right? You people aren't mind readers, so you need to tell people what you need and and you know, and so that they know, so that they're not set up to fail and they can, they can help you. You could say be very direct. You know, if you could say it'd be very direct. You know, if you could just check in once a week? You know, because sometimes I I don't know and I don't want to bother you, but it would be great if you could check in with me once a week, or if you could. You know something like that, where you set you to set up some things that that would be helpful for you and you ask for them. Now you're, now you're're allowing them to fulfill that and feel good rather than feeling like they failed you.
Speaker 4:That's correct, and they say that a path to a friend's home is quickly overrun with thorns for lack of constant use, and I think again the caregiver. We have to look at ourselves as taking on the responsibility of reaching out and having other people be invited into our life, and it could very well be that people are standoffish because they don't know what to do. They don't want to offend, exactly.
Speaker 2:What should I?
Speaker 4:say Do I want to do this? But then it's almost maybe a relief for the caregiver to reach out and say would you do this? Oh well, thank you for making that approach to me, because now I can feel comfortable doing that.
Speaker 1:And of course then that grows Then that grows Right, right, yeah, and some people don't even know that how to like. Should I be happy? Should I be sad for you? Should I? You know, they don't know how to even. It's like and likely you would want them to be upbeat and they don't have to be down and sad and oh my gosh, I think that actually is counterproductive, and I think so sometimes the way you put yourself out as the caregiver saying, hey, yeah, things are tough, but I need my friend. You put yourself out as the caregiver saying, hey, yeah, things are tough, but you know.
Speaker 1:I need you know, I need my friend, I need you know, let's you know it's not don't be afraid, I think you know people are afraid of how to deal with it.
Speaker 3:We model. We need to model how we interact with our loved one and I think by modeling, people see that. You know, when I go to, when I would visit my mom, I always came in like a tornado Hello, mommy, it's your daughter. I'm here, susie, your favorite daughter in the whole world, because I'm your only daughter and I'd come in and do a dog and pony show and I never tried to come in dark or sad. I wanted her to feel happy and feel loved and whether she knew who I was or not, I just reminded her. I would just tell her. I didn't ask her, I just sit behind her so that you know. That's what I was taught In my journey from wonderful people that knew better than me said don't make her guess who you are, Just tell her right away.
Speaker 4:So I did, and so it's yeah, make her guess who you are. Just tell her right away. So I did, and so, yeah, if someone is making notes on this discussion, what you should write down is what don said, and that is as a caregiver, reach out. I think that's a very important message of all the things we've talked about to help a caregiver, and that's to reach out, and so someone reach out. That's almost that's reach out. That's not an acronym for roar, is it?
Speaker 1:reach out and, and we need a good r oh, you got 10 years, I just and rejoice and and rejoice, yeah, and and relax, and yeah, we can make a hundred of them.
Speaker 3:Anyway, this was so wonderful. Was there anything we missed that you would want to share at all?
Speaker 4:I just can tell you that I was just very pleased to be with you and just very much in admiration for what the two of you are doing.
Speaker 3:So thank you, thank you, vice versa.
Speaker 1:We're honored to have you here today and for everything you've done in the past, everything you're doing now and for everything you're going to be doing in the future.
Speaker 4:Yes, I'm not aging out for a while. That's what. Nah, not even close, I'm getting to the time, penn, we're talking and then, while people age out, well, I finally understand what that means. I don't want to do that no no, I don't believe in aging out.
Speaker 3:I think we are aging in. That's what we are we're aging in.
Speaker 1:That's a decision, that's a decision you make. I think it's a ridiculous.
Speaker 3:I think it's ridiculous. The more, the longer I live, the smarter I am, and I don't understand how we, how we discount that, because that that is a fact. We get smarter If we're, if we're, if we're lucky to live, longer we're, we're smarter, we're better for it. So I loved this interview. I loved it so much. Thank you for joining us today. Thank you for all that you do, you're. You're a delight, first of all, and I just thoroughly enjoyed the book my Two Elanes. If you want to get this book, we'll have all the information on the show notes and all ways to reach out to Martin Schreiber. We call him Marty, but I'm looking, you know, being respectful. And yeah, if you need a speaker, this he would. He's a wonderful speaker and really representing a part of our caregiving community that's underrepresented. So please do that, and I just loved it. And love is a theme for us, isn't it, don?
Speaker 1:Yes, and that's because love is powerful, Love is contagious and love conquers all we do. Thank everyone for watching and listening today. Please share, subscribe, do all those fun things and we'll be seeing you next time on Love Conquers All and join Roar Everyone Roar. Roar.
Speaker 3:Take care everybody. Bye-bye, Bye-bye.
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