 This is Dennis McMahon. Welcome to Positively Vermont. My guest today is Karen W. Erickson, author of a very interesting book called What Works When Memory Stops Working. It's a combination memoir and self-help book regarding her mother who was suffering from Alzheimer's disease. Welcome Karen. Thanks so much, Dennis. First, what we like to do here in Positively Vermont is tell us a little bit about yourself. Sure. So my background is as a teacher, as an art teacher. I taught first day of school in Western Massachusetts called Northfield Mount Hermann School. And then I had a small cottage industry when we lived in Indiana. And in that cottage industry, I started writing children's books and realized that writing was really a passion for me. So I started working for the Essex Reporter and writing for what's called Primetime Journal of 60-plus interests. And that led me to taking really a sabbatical with my children in Cebuatanejo, Mexico, where my writing really took off. And then I didn't really look for an opportunity to write when my mother had Alzheimer's. That book really wrote itself because I needed to help other people see what we did to make my mother have a wonderful life in spite of her disease. Tell us a little bit about your mother and your family background and who she is. And tell us a little bit about herself and her history. So my mother was born in 1926. So her family really had to live with the depression and all the attendant issues that go with the depression. It was a loving family, a very, very close family, when she met my dad in high school. And they were married in 1947 and were married right up until my mother passed away in 2011. My mother was a bright, spirited, fun, funny person with a big personality and a big laugh. She was really one of those people who did light up a room when she walked in because she was friends to everybody. I remember one of the things I said when she passed away was she never said a negative thing about anybody because she said, you never know what other crosses people are bearing in their lives. She raised my brother and me. We were a family that did activities together. We learned how to play tennis together, bought our tennis rackets with green stamps and did a lot of traveling together. We went to Bermuda every five years. My dad ran a company in New Hampshire. My mother was a nursery school teacher for a while and then she did a lot of activities, was on boards and just a friendly, active person, until around the beginning of 2000, we started noticing that she was asking us the same questions over and over again. She asked me if she could set the table at Thanksgiving and she had just finished setting the table. She forgot my birthday. That was the big piece that let us know that she was really having trouble. Let me ask you this because this show goes far and wide. Tell us your mother's full name and her maiden name in case she can speak with you or yes. Sure, so her name was Shirley Irene Christie. C-H-R-A-S-T-I-E. She was born in Westboro, Massachusetts and lived there all her life until my father and my mother got married and her married name was White. So Shirley Irene White. That's great. So just in case people may wanna look her up and look you up, your name is Karen White until you married your husband. That's right. So sometimes when I was growing up, which is a long time ago, people used to say when people were forgetful, they had hardening of the order. Right. So tell us what, I know you mentioned a few but she didn't mention, she didn't remember your birthday but tell us some of the other things. Was this reported to you or was this something you observed about? This was something I observed. Yeah, this was something I observed. So I remember we were having dinner with our daughter and her then boyfriend when she was attending Skidmore College and she kept on asking the boyfriend the same question. You know, now where are you going to school? What grade are you in? You know, how did you meet my granddaughter? And we just kind of thought she was struggling for something to talk about. So we didn't think too much about it. But she just kept on forgetting that she had just asked the same question. And I said to my dad privately, is there something wrong with mom? Because she's asking the same questions and he started crying and said, we think she has Alzheimer's. And I can't remember if my birthday being forgotten where that came into that whole pattern but there were a lot of signals that led us to believe that something was wrong. Now, later on what happened when she was diagnosed was there was a personality change which is my understanding is significant of Alzheimer's. So dementia is an umbrella under which Alzheimer's is one form of dementia. And when there's a personality change and obviously I'm not a physician, I'm just going by what I've been told and read, that's more of a signal of Alzheimer's. And so here is this happy, go lucky, wonderful, friendly, fun, respectful person who said to my dad at one point, so you think I'm hard to get along with? You think I'm not being very nice? And then threw a glass of water in his face and said, how do you think that is? Do you think that's nice? This is not what she would be like. She refused to take any of her medication because she didn't remember having been prescribed any medication. She would feed the dogs three times in a row. She would see our golden retriever sitting on the floor looking up longingly for food and she would say, oh my darlings, I'm so sorry I haven't fed you. I'm not a very good mother. And she'd feed them and I'd say, mom, you did just feed them. Look at their bowls. The water is still wet there. And she'd say, are you trying to tell me? I don't know how to take care of my dogs. So the dogs all gained literally 40 pounds each because she was feeding them so much. She would get up in the middle of the night and dress and start taking the dogs for a walk at three o'clock in the morning. So we had to put a reverse security system on the house that rang a bell when she tried to leave the house. She disappeared one time and we didn't know where she was. Dad was taking a shower. She was walking down the street. She called the police one time and said there's a strange man in this house who says he's my husband, but he's not. And the police came and looked in every closet. They sirens on blocking the driveway. The nice thing was that my dad was able to take the police to the side and just say very quietly, she has Alzheimer's disease. And so they put a note in their records. This was when we lived in New Hampshire of what was going on. So if that ever happened again, they could be respectful of her and come and talk to her, but they knew what the problem was. Once this happened, I know your book details some of the mistakes that you made or other people might make in dealing with someone who has the diagnosis. And we're at the point now where she has the diagnosis. What were some of the mistakes you made and how were you made aware of that? Sure. Well, one big mistake was my mother would say, my folks are gonna worry where I am because I'm not home. And I'd say, oh, mom, your parents passed away a long time ago. And then she would cry and say, nobody told me, I didn't get to go to the funeral. And I thought, well, that's the wrong thing to say. Here I am making her so upset. So my father figured out that he'd say to her, I talked to your folks, they know that you're staying overnight in my house and that I'll bring you back tomorrow. And she said, oh, thank you so much. So we just needed to enter her world. It felt like lying, but we had to enter her world. And her world was that her parents were still alive. And if I told them they were dead, she didn't remember going to the funeral. So all I did was upset her. And then when I would go to give her medication and she wouldn't take it, I would get frustrated with her and say, mom, it has your name on the bottle. See, Shirley White, two pills, it's your name. It's your medication. And she'd say, I'm as fit as a fiddle. I take no medication at all and I'm not gonna take it unless my doctor tells me to. So I called the doctor's office and asked them to leave a message on the message machine that told my mother it was okay to take the pills that my father gave her or I gave her. And every day for the rest of her life, we played that message machine. So you were sort of creating successful alternatives to accommodate what she was thinking. Yes. Let me ask, who gave, did anyone give you advice to do that or did you consult any professionals who said, this was the thing to do? Because a lot of our viewers really don't know how Alzheimer works to be progressive, can it be arrested, give us a little bit of the... Sure. Athologism is what you use to help. Well, a lot of what we use to help was reading some guidelines from the Alzheimer's Association that talked about not arguing with your loved one, but trying to enter their world as best as you could, which is not easy to do when you don't wanna lie to somebody, you know? But we had to come up with solutions that were logical. So for instance, my mother said to me, there's a man here who says he's my husband and he's not. So I got on the phone and said, describe him to me. And she said, old man, short, gray hair. And I said, that's him, dad, he just got old. Whereas what I was thinking was the right thing to do was to show the marriage certificate, to show the pictures of their wedding. And everything I learned was that I couldn't do that. I had to enter the world right where she was now. I couldn't go back in time. Now, lots of dementia, people have short-term memory loss but can access long-term memory loss, long-term memories. My mother could not access long or short-term memory. And what did you find didn't work when this occurred? Well, some of the mistakes that you or some other people make when this happened. Well, that one big mistake that I knew was wrong was when we told my mother that her parents had died. So that was one big mistake. The other one was trying to be logical with her. Logic didn't work at all. And so anytime we pictured correcting her, I had to see what an alternative was to correcting her. What was something that she could hold on to that wasn't about correction, you know? Or not only just correction, but making her feel bad. Like when she forgot my birthday, my first reaction because I didn't know what she was going through was to be upset with her. I had to learn not to be upset. Like one time I was sleeping with her, giving my dad respite. So we had single beds next to each other and she would wake up in the middle of the night and she would start to make her bed and get dressed. And I would say to her, Mom, it's night outside. Look, it's dark outside. That means it's time to go to sleep, not time to get up. That logic doesn't mean anything. She has no clock that says it's dark, it's three o'clock in the morning. And so I got her to go back to bed and five minutes later she got up to make her bed again and again and again. And I remember saying to her, look, Mom, when you get up, just don't talk to me. Because at this point I was frustrated. Just do your thing and don't talk to me. The fourth time she got up, I said, Mom, please go back to sleep. And then she just refused to talk to me. And I said, what, you're ignoring me now? And she said, you told me not to talk to you. And I'm like, really? That's the short-term memory that you thought is that I told you not to talk to me. You know, it's hard not to get frustrated, but your frustration goes nowhere. Your frustration helps no one. It's a matter of, for me, pretending I was a patient person and acting like what a patient person would act like because I am inherently impatient. So I had to be another person, otherwise, who was I hurting, both myself and her? Let me ask you this. Other than looking out for the safety and looking out for your own world and in the initial environment where both of you are in, what could you do or what can people do to make this person happy? I mean, I know it's frustrating for you. It's dangerous provoking for you, but what about care for the person's problem itself? What could you do other than just deal with the momentary situations or the progressing momentary situations to really try to make this person happy? Yeah, no, that's a great question. And it's a question, unfortunately, that people don't ask. What they do is say to themselves, oh, Shirley won't know my name. So there's no sense in me visiting her. This is not a name game. If you can make somebody happy momentarily, isn't that what life is about? So really what you can do is plan activities, take them out to dinner. And when you're at dinner, say something like, you like Ville Cordon Bleu, right? And they'll go, oh, yes. Is that what you'd like to have, Ville Cordon Bleu? Yes, that's what I'd like to have. You need to give them hints because on their own, they can't decipher that menu. You can make play dates, if you will, just opportunities for walking down the beach or wherever you might live, walking dogs together. My mother and father used to invite friends to meet them at the cemetery where they used to walk the dogs. Now, when she ended up that my dad couldn't take care of her any longer and she was in an assisted living memory type unit, his solution was just to bring activities to her, first bring the dogs to her, bring music so that they could dance together, take long walks, look at the garden, pick flowers. You just have to be creative as to what activities would be fun, go for long drives, sing songs. Now, that's something my mother could do for a long time was sing songs until she no longer could speak. She could sing songs. They could go get ice cream together. My father just had to prompt her. So if somebody came to visit, she would say, here's your friend, Sarah. Sarah lives on Mill Road. Sarah has a black lab. The black lab is such and such. She's come to walk with you. You just have to prompt them because my mother could repeat things back, like, oh, hi, Sarah. Oh, hi, Barney, the black lab, because my father had prompted her. So for her, she seemed kind of normal to other people. It's really invite people to birthday parties and let the significant other come with you so they can say things like, here's your present that you're giving, Cheryl. Remember, you gave her such and such. It's just a matter of thinking differently. In some ways, it's a little like thinking, I hate to say it because they're adults, not children, but you have to think a little bit about how would you help your children to adjust to a difficult situation? You would prompt them. Hey, it's time for us to go for a walk now. Let's go outside. Let's get your coat on. I'll help you with your coat. It's not that challenging to find fun things to do. Well, before we get into the book, why don't you tell us, like, where people can go for help? Let's say you're at an advanced stage that you weren't. You people didn't really understand what was going on. You get the diagnosis and you speak to a physician or another health care professional. Where do you go next? Well, so what was significant for us and I'm not sure where it exists in Vermont, to be honest with you, we were in New Hampshire, is we have a geriatric consultant that my father hired who would advise my mother and father, advise my father mainly on what would make sense and to give him scripts to work with my mother, to give him ideas. She was given permission to see all of my mother's medical. She was an RN to see all of my mother's medical records, to go to the appointments with my mother and father and to work directly with her doctor. This is really, really important to have this advocate and it doesn't have to be somebody who's Alzheimer's. It can be somebody with any form of dementia. And also there are a lot of families who don't have loved ones nearby to help. So for me, it was helpful that somebody could help my dad because I lived three hours away, but think of somebody who has a family member who's in California. You need somebody who's an advocate. So that's one thing. Another thing is to participate in the groups that the Alzheimer's Association have as support groups. Vermont has an Alzheimer's Association. There's a walk that's coming up with a memory walk with the Alzheimer's Association. I'm one of the volunteers to help raise money. The Alzheimer's Association is a great support for people and they're in all states. My father was on the board of the New Hampshire, Massachusetts Alzheimer's Association and advocated in Washington DC with our Senator, the New Hampshire Senator, to try to appropriate more money for Alzheimer's, donate to the Alzheimer's Association. They do good deeds. The big thing is that they are there to support families who are going through this. Great. Tell us about your book and how did you get the idea to do it and take us through what it tells people how to do and also if any other reference sources in addition to your book. Sure. You can see that. Now that they're gonna read it all here, but give us an article. Sure. Well, so I've been in a writing group for 15 years and part of the writing group of course is to write experiences that we have. And I started a journal of things that were a part of my mother's disease with the hopes that I'd be able to help somebody in the future. So I would write stories, some of which were comical but not disrespectful, but they were also discussing how we helped her. And what I realized was that there are a lot of how-to books out there. You can find lots of Alzheimer's books and I have them in my library. I should have grabbed some of them before the show. But they're not a lot of books that tell stories about the person before they had Alzheimer's. Then what happened when they got Alzheimer's and how we helped them recover. So for instance, one of the stories is called Mrs. Coffey's Dancing School. It's about the fact that my mother forced me to go to ballroom dancing school when I was a child. And the funny things that happened during that ballroom dancing classes. You know, the boys on one side and the girls on the other and where they were their patent leather shoes and white socks waiting for somebody to please ask us to dance. And then I talk about how my mother and father danced all the time. To the point where people would stand in circles and clap and watch them. And then the last part of the story was how dancing could be something that you could do with your loved one who has Alzheimer's. And each one of the stories talks about the activity you can do, but it talks about our family and how all of that is related. Another story has to do with how my mother taught me to drive. And then how we got her to stop driving. You know, so I didn't want a story or I didn't want a book that just said, here's how you help somebody. This is a way for people to self discover in their own families, the activities that were important to them and how you can still do those activities. For instance, somebody might write a story because they grew up on a farm and how important farming was to their family. Maybe their loved one was milking cows every morning and tending the corn. Well, then the story is about how they can continue to milk the cows and garden with the Alzheimer's because that's important to them. It's a part of their past. It's deep in their hearts to be digging in the ground. You see what I mean? And so I didn't want to write a how-to story. So it's a little like a memoir, but it's also a little bit like, here's how-to. It's just not a straight how-to book. That's great. Well, tell us a little bit about HMS Pinafore, one of my favorite operettas and how Gilbert and Sullivan play the role in this. Well, so I had a music teacher in middle school who loved operettas and every year would do a different operetta. So in my eighth grade year, it was HMS Pinafore. I wanted the part of Buttercup so badly. I auditioned, I thought so well, it was down to me and one other person. And we just had to cry. We had to audition or crying. Well, my crying was the kind of crying where you are out of control, sobbing, heaving. It was an Academy Award-winning performance, but not for Buttercup. So I ended up being a sailor and with three of my best friends and then the rest of them were guys. So, but in the course of rehearsal one day, one of our other sailors rushed off the set and threw up. And when we found out later that he had epilepsy, we didn't know very much about that, but we knew that he had had an event. And so when my mother had the same kind of, petite mall, grand mall, seizure, I had that experience of it before. And related those things together. And we obviously got her a different kind of help, but I remember thinking to myself, I felt really badly later as an adult that we had sort of ostracized this child, who had a seizure and here's my mother who had a seizure. It just allowed me to have more of a human touch to the situation. And I would have been a really good Buttercup. That's great stuff. Tell us about, you know, her final days. Yes. How do you think that, you know, I know this is very difficult, but how do you think you made them better or how people are working better if they accept the inevitable? Well, you know, we had to have discussions with hospice and we had to have discussions with the doctor and we decided that palliative care was the solution. So make her comfortable, but not have any unusual responses. So when she had a swallowing incident, because people with Alzheimer's swallowing reflexes stopped working very well and she aspirated into her lungs, which created pneumonia and created breathing problems. The palliative care doctor said, no, no, no, you need to bring her to the hospital for this. You can't let her suffer. So in the hospital, there was a hospitalist, which was a new type of doctor for me, a doctor who just works in the hospital and takes care of the people. So she wasn't her primary physician, but she helped everybody who was there in the hospital as patients. She said, if we keep on treating this situation, the people who are being helped are you, my family, not my mother. And it would be unfair and unkind and possibly cruel to not let her just go home or back to the place that she was living in the memory care unit and be a part of hospice. And so she went back there. They transformed her room into this beautiful place so that she could look out the window and see the flowers. And we moved into her room with, there was a bed from my dad and I somehow got this idea that I needed to put two chairs together to make a bed. I had seen it on, I love Lucy one time when Ricky was in trouble and he put two chairs together. And I mean, this is what happens when you're not thinking very straight. So I put two chairs together to make a bed. I could have asked for a recliner chair, didn't think of it, and sat next to her bed and held her hand all night long. And she had a lot of morphine and she also had a scopolamine patch on behind her ear the kind that you get when you go on cruise ships to keep you from having motion sickness but it also dries out your mucus membranes. So she wouldn't have much swallowing to do. And she was breathing with her mouth wide open and it was a slower breath. And I was doing, working on an email and I looked over and I thought, uh-oh. And I looked at her again and she was breathing. And then by the time I'd finished my email, she was gone. And I was there alone with her. And I fully believe that whoever is there when people leave, they're the ones who are supposed to be there. My father was in the other room shaving. My brother had already gone back to Michigan and I was able to tell everybody that it was a peaceful passing. And I'm grateful for that. Let me ask you this, after this, and we're talking years now. Yes. Just wrote the book, were there any after effects? I know sometimes people have relatives and they may think that somebody did too much or too little. How does one cope with the after effects of Alzheimer's and the inevitable result? Well, if you're thinking, did anybody criticize us that we could have done something differently? No. People, if anything, said that my dad was so wonderful to keep her home for so long. But you know, the geriatric consultant that we had really pushed him with two things. One was to have some respect. So we hired somebody to be with her, take her for a ride. She didn't like it, but we did that. And the other thing she said was, what happens if you get sick? This is speaking to my father. Who is going to take care of her? And dad realized that that was a potential problem. And so they first moved into assisted living, the two of them in a facility, an independent living actually, my mother and father together. And then he determined that he had a melanoma and put her into the memory unit while he had surgery and recovery. And he realized that that's where she needed to be. She was safe, she was happy, she had a little apartment, she had activities. And I said to my dad, dad, sometimes God does for you what you can't do for yourself because he probably wouldn't have done that if it hadn't been for the melanoma that he had. So there was no criticism at all. I would say the criticism, Dennis, came from us being critical of her friends for not visiting. Because she only had a few friends who came to visit her in the facility. I don't know what it was about. Part of it was she won't recognize me. And we would say, it doesn't matter. You just make her day. And the other piece, I think, is people just didn't want to see people in that condition. And I wonder if they worried about what their future could be and they didn't wanna see their future. I don't know. I know that we did everything, I think pretty right with this situation. Amazing byproduct of this was that my father, my brother and I became a lot closer. It had been a unit that was very strong with my mother, my brother and I and the four of us with my dad. But we were closer to my mother because my father was working so much running businesses. This switched it. And it became a triangle of my father, my brother and I. And my father said at one point that that was an amazing gift that we got amidst this unpleasant gift of Alzheimer's. Well, that's great. And your father, will he pass? Nope, he's 95 years old. He's got a couple of times when he struggles a little bit with some things but he can remember every football play that he ever played when he went to Columbia. He can remember names of people and dates of a long time. But he's 95 years old. So at times there's a few little struggles there and that's okay. I know what to do, I do. That's wonderful and I hope he continues to do well. Well, let's ask about where people can learn more about this book. It's called What Works When Memory Stops Working by Karen W. Erickson. How can they get a copy? Is there a website or anything else that people can do to find out more about this very important work? Well, so our local bookstore Phoenix Books in Burlington, Vermont has copies of it and you can also get it online at phoenixbooks.biz. Hope I'm saying their website properly. It's also on Amazon and Barnes & Noble. You just have to type in the search bar what works when memory stops working. I'm pleased to say that I've got some really great reviews on it and I'm so happy about that. And there's a Facebook page that's called What Works When Memory Stops Working. It's fairly new. It just started when the book first came out in June. What my goal is, is for people to share what has worked for their families because it's not just about what we figured out. Lots of families have figured out wonderful solutions. Please go on and share those with other people so that we can help people. That's my motivation. My motivation is to help people cope with this disease, both the person who has the disease and the family. And that's my goal. That's great. Well, thanks very much, Karen. And it's good to see you online here. And this is Dennis McMahon for Positively Vermont. My guest has been Karen W. Erickson of Vermont, author of What Works When Memory Stops Working, a memoir and a self-help book on dealing with what ones who have Alzheimer's disease. Thank you for watching.