Transcription of Alzheimer’s, #114

Male: You’re listening to the ‘Dr. Lisa Radio Hour and Podcast’, recorded in the studio of ‘Maine Magazine’ at 75 Market Street, Portland, Maine. Download past shows and become a podcast subscriber of Dr. Lisa Belisle on iTunes. See the Dr. Lisa website or Facebook page for details.

Here are some highlights from this week’s program.

Dr. Tess: It’s terrifying. It is really terrifying. I think that everybody is terrified of Alzheimer’s especially if we’ve seen that helping to our family member. I think what’s really scary is knowing what a large percentage of the American population is going to come down with it.

If you live above older than 85, there’s one in three chance you are going to get dementia of some kind.

Leon: There isn’t a solution. There is a process that you have to go through and hope for the best ending.

Male: The Dr. Lisa Radio Hour and Podcast is made possible with the support of the following generous sponsors, ‘Maine Magazine’, Marci Booth of Booth Maine, Apothecary by Design, Premier Sports Health, a division of Black Bear Medical, Sea Bags, Mike LePage and Beth Franklin of RE/MAX Heritgage, Ted Carter ‘Inspired Landscapes’, and Tom Shepard of Shepard Financial.

Dr. Lisa: This is Dr. Lisa Belisle, and you are listening to the Dr. Lisa Radio Hour and Podcast. Show number 114, ‘Alzheimer’s’, airing for the first time on Sunday, November 17th, 2013.

Today’s guests include Dr. Tess Gerritsen, bestselling author and former physician, and Leon Duff, volunteer and board member of the Hospice of the Waterville Area.

What does it mean to lose one’s mind, to become someone unrecognizable to our loved ones and peers? Today’s guests unfortunately have witnessed the scenario firsthand. They have seen family members transform by the brain illness, Alzheimer’s. As individuals who have relied heavily on their own brains in creating a livelihood for themselves, they offer compelling perspectives on what it means when that is no longer possible. We hope that we are able to give your minds something to ponder as we speak with Tess Gerritsen and Leon Duff about Alzheimer’s. Thank you for joining us.

Maine has many good doctors and many good writers living amongst its boarders, within its boarders I should say. Some people happen to be both, not many, but some. One of them is the individual we have sitting across the microphone from us today. This is Dr. Tess Gerritsen who is both a physician and also a bestselling internationally known author. We’re very privileged to have you in the studio with us today.

Dr. Tess: I’m very happy to be here.

Dr. Lisa: I’ve been, as I was saying to you before we’ve got on the air, I’ve been listening to one of your most recent books from ‘The Rizzoli and Isle Series’, and it just strikes me that it must be an interesting world that you live within, always kind of creating what’s going to go next on the page.

Dr. Tess: I think it comes from my childhood history of loving horror films. My mother used to take me to many, many horror films because that was her favorite kind of movie. I think I grew up thinking that there’s a dark side to everything. It means that every morning when I wake up, I think, “What’s the worst that could happen today?” I think that that’s also why my children have learned to be cautious about life because mom is always saying, “What’s the worst that could happen?”

Dr. Lisa: You dedicated this most recent book that I have been listening to to your mother. It really is your experience with your mother most recently that has, I guess spurred you to talk about this very serious subject of Alzheimer’s.

Dr. Tess: Yes, it was my father primarily. My dad was in his early ‘60s when we began to realize something was wrong. He was having trouble finding his way home, he was having trouble driving, he would ask the same questions over and over, and it progressed very rapidly. He’s the only one in our family that I’m aware of who came down with Alzheimer’s. We knew early on that this was going to be bad.

He fell apart pretty much in San Diego. He lives on the other coast. I was spared the worst of having to deal with it, but his sister, my aunt was amazing. She was able to hire people to stay with him. My father never had to leave his house. He stayed in his house until he died.

Of all the experiences of Alzheimer’s, I feel very fortunate that I had such help, but I’m thinking about all these people in the country who don’t have that help or struggling with this every day in their own homes.

Dr. Lisa: How did this impact your mother then?

Dr. Tess: My mother had divorced my father earlier on, so she was not involved. She moved in closed to us in Maine. Then again, we saw dementia in her as well, not Alzheimer’s, dementia. I think that hers was probably more cardiovascular than anything else. Yes, I have two parents who died with dementia.

Dr. Lisa: That would be an interesting thing also being a physician and knowing if you have two parents that have this very disabling disease, the likelihood that you could be yourself someday afflicted with this is probably fairly high.

Dr. Tess: It’s terrifying. It is really terrifying. I think that everybody is terrified of Alzheimer’s, especially if we’ve seen it helping to our family member. I think what’s really scary is knowing what a large percentage of the American population is going to come down with it.

If you live above older than 85, there’s one in three chance you are going to get dementia of some kind. You could be as healthy as a horse. You could walk … My father, when he died, he could walk for miles without getting short of breath. He had a perfect machine as a body, but there was no computer directing it.

Dr. Lisa: As a physician and an author, who is always thinking like, “What’s the worst that could happen?” Does this thought enter your mind that, “What’s the worst that could happen to you?”

Dr. Tess: Absolutely. Every little thing like I can’t remember a word, it sets off this whole chain of, “Oh my God. This is the beginning. This is Alzheimer’s about to blossom.” I do so many things that we’re told to do to prevent this. I exercise, I drink red wine, I get lots of sleep, I eat fresh vegetables, but no matter what you do, some people are going to be struck down with it. It makes me I think more committed than ever to doing something for research.

We spent $200 billion a year in this country dealing with Alzheimer’s among Americans, and we’re looking at in the year 2050 having that increase five times as the population gets older, and yet we’re spending so little on research.

The one thing that’s actually killing Americans, not Al-Qaeda. It’s not Al-Qaeda who’s actually killing Americans, it’s Alzheimer’s. It’s all these other things that we are not devoting our resources to.

Dr. Lisa: Which is interesting because we know that we’re an aging population, and mainly especially know that we’re an aging population and this is one of these diseases that typically occurs amongst our population.

Dr. Tess: Yes. Yes. I was reading something from the Alzheimer’s Association, that of the top six things that kill Americans, Alzheimer’s is the one disease that we don’t have any prevention for, we don’t have any treatment for, it’s just increasing.

Every other illness in the top six has shown improvement over the last 10 years, but Alzheimer’s is gone the other way.

Dr. Lisa: You obviously had a slightly different family situation and as you said, your aunt helped take care of your father and you felt very fortunate in that way. You also had your mother move in close to where you were, so there was a lot of family support, but many families don’t have that. Is the work that you’re doing with Alzheimer’s research, are you also hoping to create awareness of the families who don’t have that type of support, they might be able to reach out and find the kind of support that they need?

Dr. Tess: I think I have a great … What I have is incredible sympathy for everybody who’s dealing with this, both the patients and the families. My focus is really on prevention on future treatment on the basic science that should be working at into this so that we don’t have to deal with this anymore.

By the time you are showing signs of Alzheimer’s, it’s too late. There’s nothing you can do to prevent it. I would love for us to get ahead of that as a country. I was in high school when we put our first man on the moon. I remembered John Kennedy saying, “This is our next mission. We are going to go to space and we’re going to land on the moon.” Why couldn’t we be doing that with something that is affecting so much of America and also that’s going to bankrupt us.

It seems like it’s penny-wise to start putting money into research now to just, at least when people get to 85, have them still be productive, have them not depend on their families and so many other resources. It makes me angry. The truth is I’m very angry with the way our tax dollars are spent, how we spend them so much on battleships that we may not ever use, all these transport planes and these bombers that we are not using, and they are not helping Americans.

What’s really destroying us right now is coming from within, and that’s disease, that’s illness, that’s the stresses that go into taking care of elderly, people with dementia.

Dr. Lisa: Do you think the part of the reason that we spend so much on these external things is it’s easier to deal with something that’s outside of us than something that might be inside of us?

Dr. Tess: I would say the reason we’re spending so much money on it is lobbyists. I think the Defense Industry has some amazing lobbyists. I think they consider this as being part of their jobs program. I think that scientists need a jobs program. I think we should be putting that money into people who are directly helping Americans.

Dr. Lisa: Your book is focused on crime, mystery, darkness … How are you able to simultaneously be writing about the things that go bump in the night, and also maintain a sense of hope about the future of Alzheimer’s research?

Dr. Tess: The things that go bump in the night are, I think it’s my anxiety is getting put on the page. I sleep very well. If I have a nightmare, I tend to use that in a book. In fact I as I say, I’m one of the few people who welcomes nightmares because they end up being productive.

I think that I am able to get my fears out on the page and that is probably very healthy. In fact, I would say that the least violent, most pacifistic people are crime writers who write horrifying crimes on the page. We get out our aggressions there.

I think what I fear about Alzheimer’s is that, that’s the real world fear. That’s something that I see all around me, and I never want to write about that. In fact, if you pick up a book of a thriller novel, you’ve almost never see it address the subject of Alzheimer’s. Writers don’t want to write about it. Readers don’t want to read about it because it’s too close to us.

Dr. Lisa: It’s also messy.

Dr. Tess: It’s messy. It’s not the glamorous kind of thing as, “Oh, there’s a purp, there’s a murder. Let’s solve the mystery,” and then by the end of the story, it’s all resolved. The only way you can resolve Alzheimer’s is when somebody dies.

Dr. Lisa: I think it also takes people back to … When you watch somebody with Alzheimer’s move progress towards death, you’re watching them devolve, you’re watching them go from being an adult person to being more child-like and …

Dr. Tess: Yes, that’s been a powerful child.

Dr. Lisa: A very powerful child. Right.

Dr. Tess: Yes.

Dr. Lisa: It’s this very … It brings you right back to the fact that we’re all very human, we all eventually grow old and die.

Dr. Tess: We don’t like to talk about that, just like we don’t like to talk about cancer or AIDS. I remember my literary agent telling me, she said, “You can write about serial killers. People will buy books about that. They’ll buy books about horrific crimes, but nobody wants to buy a book about cancer or AIDS or Alzheimer’s.” That’s why New York does not want to see those because we are all truly terrified of those things, and that’s not what we want to address and try and entertain ourselves by reading a book.

Dr. Lisa: You’ve been writing for a long time. I believe 1987 was what I …

Dr. Tess: Yes. Yes. I have been. I guess that would make it 26 years now.

Dr. Lisa: This was your maternity leave after having given birth to your son. Is that what I remember reading somewhere?

Dr. Tess: Yes. That was really how I eased my way out of medicine. I was working as a doctor, and then I gave birth, and was home for a couple of months. My son was a very good napper. I would put him down and he’d be asleep for two and a half hours. That was enough time to write maybe two pages. My first book was written while I was home with my very good sleeping son.

Dr. Lisa: You’re a very hardworking writer. You have written many, many books. I was very impressed when I went and looked at your website to see all the books that you have written over the years. I think I’ve read maybe three or four of them. I was realizing, “I have to catch up now. I haven’t …” You’re not very old and somehow you’ve managed to just keep writing and writing and writing?

Dr. Tess: People think that I must be really productive, but all I really do is write a book a year. That I can manage. I can manage a book a year but primarily because I’m forced to. My publisher wants a book a year, and it’s just a matter of longevity. If you keep doing that every year, you live long enough, it’s going to look like you were writing like crazy.

I think I have a pretty … it’s a pretty relaxed schedule. I can turn in four pages a day and I’ll be happy. That takes up maybe six hours a day. That leaves a lot of time for other things like gardening and hanging out with my son on his farm and a lot of travel. I could not ask for fairly a better career.

Dr. Lisa: Yet, I think you might be underselling yourself just short because I have interviewed many authors and there is also the travelling associated with promoting your book, there are the readings that you do, and really in this day and age, you have to be a self-starter not only as somebody who sells your books, but also as somebody who writes.

Dr. Tess: That is true.

Dr. Lisa: It is actually very difficult for anybody who’s listening who thinks, “It’s just four pages a day.” It is not easy to do that.

Dr. Tess: It is focus. I think I’ve always been focused since I was a child. I remember that I would be reading a book and I wouldn’t hear people calling me because I was so focused on the story.

There are a couple of tricks to being able to turn in a book a year. My trick is primarily don’t stop to edit. I write from beginning to end, and I see the flaws as I’m working on the book, but I always tell myself, “I can go back and fix that.”

A lot of authors who can’t seem to finish their books, it’s because they keep editing and they edit the first 50 pages again and again. They never get beyond that. You have to learn to accept imperfection in your first draft. Learn that it’s okay to write badly because nobody has to see that. As long as you give yourself permission to write badly, at least you’ll write. Then after the first draft is done, I look back at it, and I’m very depressed because I can see how bad it is, and then I just proceed to do the rewrites. Maybe about the third rewrite, it starts to look okay. I don’t turn in the books usually until about five rewrites later. It all comes from at least having something to work with and something to revise, and that requires finishing the first draft.

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Dr. Lisa: What did your parents say to you once you finally went through medical school, became a doctor, and then decided, “Oh, I’m going to be a writer after all.”

Dr. Tess: I got the medical degree. That’s what mattered to them, and that was something that they thought I could always fall back on. My mother was really proud of me because she lived long enough to see my success. My dad unfortunately got his Alzheimer’s before he could appreciate that I had become a writer. My mother used to take me to horror films. You’ve read my book. You know how scary that can be.

All my mother would read every one of my books and her comment was usually, “It could have been scarier.”

Dr. Lisa: That’s something, that it’s also interesting to me that your mother would bring you to horror films. Many people try to protect their children, and instead, your mother was doing the opposite.

Dr. Tess: My mom … It’s because she loved horror films. Her English was not that good, because she was an immigrant. Horror films I think you need the least facility with the English language to understand what’s going on. The monster doesn’t need to say a thing. You just need to … It’s all visuals. That’s part of the reason she loved horror films.

My brother and I spent … We were really young and we were screaming in these movie theaters. This is before the ratings, the Parental Guidance ratings. We saw a lot of movies that probably severely damaged me as a child. When I look back on them, I try to analyze what made certain movies scary. The monster movies, you saw those, you got scared, you left and that was fine. You didn’t think about them anymore.

The two scariest films I can remember, one of them was a movie called, ‘On the Beach’. It was about the aftermath and nuclear war. At the end of the movie, everybody is dead. All of humanity is dead. Oh my God. That was an incredibly depressing thing for a child to watch because I sort of imagined that movies were reflection of real life and I kept watching the news about the nuclear testing and thinking, “What is wrong with humanity? Why are we going towards this destruction?”, because that movie terrified me. The other movie that had this really long effect on me was the original black and white version of ‘Invasion of the Body Snatchers’. Older people remember that. The reason, if in case a lot of your listeners don’t know what that movie is about, it’s about these sea pods that come from outer space. While you sleep, they take over your body. Your personality disappears, but you look exactly the way you are and the sea pods have taken over your body. Nobody can really see it except for those who are close to them. You can go to bed one night, wake up and mommy is no longer mommy. No matter what you say, nobody believes you.

I’m trying to think, “Why was that so scary?” because there was no violence in this film at all. What it was a metaphor for as a child is affection. It was the people you love are no longer the people you love. It’s a metaphor for divorce, for somebody having an affair, for your parents no longer loving you … It was all the things that kids are afraid of. I think that that’s psychologically was pretty disturbing to a child.

Dr. Lisa: What’s also interesting because that ends up happening with Alzheimer’s, really.

Dr. Tess: That’s absolutely true. Now that you say it, I’m thinking, “I slap myself on the face.” Why didn’t I not think of that? You’re absolutely right. It’s the people you love are no longer the people that you think they are.

Dr. Lisa: Also, you’ve talked about ‘The Mephisto Club’, you talked about this possibility that there are those walking amongst us who are not what they seem.

Dr. Tess: Yes.

Dr. Lisa: That also brings through with the whole people having … They’re supposed to something but they’re something else.

Dr. Tess: I think it’s a fear of what really lies beneath the smiling face. That particular book I dealt with, I think really we would classify as sociopaths or psychopaths is the other term that some people use. People who seem friendly, they seem reliable, they seem like they’re normal people but underneath there’s no empathy there. There is the possibility of violence. There is somebody who’s going to be using you or abusing you, and yet smiling the whole time. That’s scary. The question always is, “How many of this people are around us? What percentage of people are sociopaths?”

I’ve heard statistics that say maybe 10% of us were there and probably a lot of them are Wall Street bankers. I don’t know … Businessmen. It takes a certain amount of heartlessness to get ahead.

Dr. Lisa: Actually, I think that there’s a very recent book that was written about the advantages of having a sociopathic personality and …

Dr. Tess: Yes, they become very successful.

Dr. Lisa: They do actually. They said among doctors, surgeons tend to be very high on the list which is not to ding surgeons because I have two siblings who are surgeons. I don’t think that they are this way. I think it crosses lots of different professions.

Dr. Tess: it does, and you probably see them cluster in certain professions. I think the least number of sociopaths are going to be probably elementary school teachers and social workers. They’re probably that. it’s probably like point one percent of them are sociopaths. Those who become successful financially, those who have to get ahead, those who would probably get there by stabbing other people on the back, yes, that’s going to be a higher number of sociopaths.

Dr. Lisa: All of this is very interesting because I think that what most of us fear to some great degree is not really knowing that this idea that things are not as they seem, that this sense of groundlessness, and we’ve talked about this with other people who have come on the show before that we all like to have some solidity to our lives. What you explore in your books is the fact that there really isn’t as much solidity as we even think. Now you’re talking about Alzheimer’s where all bets are off eventually.

Dr. Tess: I think that the heart of a mystery novel is that people are not what they seem. The killer is always disguised. You don’t know who this killer is, and it’s rooting through the various suspects and figuring out, “Who has got something to hide?” That is … I think we do that in every day life as well. “Who do you decide to marry? Did you marry a sociopath or did you marry the beta social worker?”

We have to make these decisions and we have to use our own instincts, but sometimes we’re wrong, and sometimes we marry the wrong person and find out only too late.

Dr. Lisa: I appreciate you coming in and talking to us today about so many different subjects about Alzheimer’s and the work that you’re doing to promote Alzheimer’s research and fundraising for that, also the books that you’ve written, your experiences with being a writer over the span of many years now, and also your time spent in Maine. I’m sure people listening to this will each come away with their own interesting, individual take on our conversation. I appreciate you being here.

We’ve been speaking with Dr. Tess Gerritsen who is an author and physician and also advocate for Alzheimer’s research.

Dr. Tess: Thank you very much.

Dr. Lisa: As a physician and a small business owner, I rely on Marci Booth from Booth Maine to help me with my own business, and to help me live my own life fully.

Here are a few thoughts from Marci.

Marci: I usually take this time to talk about business and personal finance. Today, I would just like to say to all the people living with Alzheimer’s and to their families, friends and supporters that you are all inspirations. I join you in hoping that someday, we will see an end to this horrible disease. My thoughts and prayers go out to all of you.

I’m Marci Booth. Let’s talk about the changes you need.

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Dr. Lisa: Many listeners of the Dr. Lisa Radio Hour and Podcast have themselves dealt with family members needing care at the end of their lives, and many listeners I’m sure have had family members with dementia.

Our next guest is Leon Duff. He is a board member at large with The Hospice Volunteers of the Waterville Area. He was the past President of The Hospice Volunteers of Waterville Area and many other things. Most importantly, he had a wife with Alzheimer’s and cared for her for 10 years before her passing several years ago.

I first read about Mr. Duff’s story in the book, ‘A Healing Touch: True Stories of Life, Death and Hospice’, edited by Richard Russo which is a fundraiser for The Hospice Volunteers of Waterville Area. Thanks for coming in and telling us about your story and the work that you’re doing.

Leon Thank you so much for having me. It is a pleasure to share my experience and hopefully I can encourage other people to become engaged in helping other people.

Dr. Lisa: That’s an important thing to talk about first, which is that you’ve been involved in helping people pretty much your entire life, but especially your adult life. You’ve had more than 45 years in education and 22 years spent as a Superintendent in school systems.

Leon: That’s true. Even in education, if you’re not in it to make a difference to help the students grow and to influence the parents in the involvement of the students, then I don’t know why you’re there. The same applies to taking care of someone who in my case, my wife, Anne had Alzheimer’s disease. I’ll tell that story a little bit.

Dr. Lisa: All right. Let’s start with first, a little bit of your background. You are from a small town up near Houlton in the County, you are the ninth of 10 children, and I’d like to hear you elaborate a little bit on that.

Leon: Okay. I was born and brought up on a potato farm , as you mentioned, nine of 10 children and there were seven boys and three girls, and what’s interesting about our family I think most is that nine out of the 10 of us have post-high school degrees. My parents had a ninth grade education. They were born in 1896 and 1897.

I went to a one-room school house which we all had to walk to. There were anywhere from 30 to 35 students, one teacher in all grades from kindergarten through the eighth grade. Then, I went to Ricker Class School Institute in Houlton which is a private school and became acquainted with Anne in a geometry class. This was our sophomore year and she said to me, “Do you have any brothers and sisters?” Then I said, “Yes. I have six brothers and three sisters.” She said, “How can you remember all their names?” I thought that was pretty funny.

We dated pretty much off and on during our junior and senior years. Then, Anne’s father was a graduate of Colby College, and of course he wanted her to go to Colby and her older brother was at Colby at the time. She went off to Colby, and I went off to Bob Jones University in Greenville, South Carolina because some of my siblings after the war went there for a college degree.

After about a year and a half, she decided she wanted to become a nurse and Colby didn’t offer an RN degree. She transferred to U Conn, University of Connecticut in the five-year program, because that was required by U Conn to get a Bachelors Degree and an RN.

After I graduated, majoring in Education which I switched in my junior year, I said, “You know, if I could get a job in the New Haven area, then we could get married.” I applied to a couple of districts there. I was offered a position in New Haven, Connecticut. We went to the beach in East Haven after I had signed the contract and we set a date to be married, which we did.

Then, Anne finished her degree work and I was teaching at Bassett Junior High in New Haven which was a 96% black school and four percent poor whites and whatever. That was a challenge.

Growing up in Aroostook County, going to a private university, and then ending up in a junior high school, that was really challenging. She finished up her work. She did some filling in at the hospital there, Yale-New Haven and then she became pregnant and we had a child in the second year there.

Dr. Lisa: How old was Anne when you first started to notice that things weren’t quite as sharp when it came to her memory?

Leon: She was about 57. We had already experienced her father who had dementia. They were calling it back then ‘Hardening of the arteries’ as I recall. It was clearly Alzheimer’s. His siblings all died with dementia and grandfather on father’s side. It’s clear that it’s in the genes. We were having difficulty and then I had her go in for testing, and she was about 57. The diagnosis was pretty clear and so I knew what I was into and she knew what she was into because we had experienced that with her father. It was challenging for her and her mind went first. Couldn’t remember an example.

She drove to Waterville which is only six miles away. When I got home in the evening, she looked at me and she said, “I had a terrible experience today.” I said, “What’s that?” She said, “I was in Waterville and I had finished what I needed to do there and I couldn’t remember how to get home.”

Soon after that, we were up north and we were driving two vehicles back home from Bangor to Vassalboro. I said, “You just follow me.” It’s early evening and she’s falling behind and falling behind, and so I signaled, pulled over, she pulls up behind me and I said, “You got a problem? You need to be closer to me so that I can see you in my rearview mirror.” She said, “I kind of had a blackout, so I slowed down. I’m not really sure. I know I’m supposed to be following you, but I had a little blackout so I started slowing down.” That was pretty much the end of her driving, but her mind went first. Physically, she was still reasonably normal.

She used to keep the checkbook and all that sort of stuff, and she approached me and then said, “I can’t remember how to write the checks.” Little by little, it was getting worse.

I was working full-time as a Superintendent. That’s at least 60 hour a week job, so I had some friends who volunteered to come and visit her during the day. Then I got involved with an agency, Helping Hands in the area, and I started with part-time help, someone coming like 10 o’clock in the morning until two o’clock in the afternoon, help her get lunch and whatever and then she’d be okay until I get home.

That lasted a little while. She didn’t relate to some of the people from Helping Hands. Finally, there was a young gal. She was probably 20, graduated from high school and taken the course at Helping Hands and then married and she came. Anne just blossomed right up to her. She was with me part-time for quite a long time, and she got pregnant, had a baby, and that was a miracle for Anne because she would bring the baby in and when she would walk in the house, it was just a whole different world, and she would put the baby in her arms sitting down of course. It was like she had gone to heaven. It was just wonderful.

Dr. Lisa: The goal of the Dr. Lisa Radio Hour is to help make connections between the health of the individual and the health fo the community.

The goal of Ted Carter Inspired Landscapes is to deepen our appreciation for the natural world. Here to speak with us today is Ted Carter.

Ted: “A world lives within you. No one else can bring you news of this inner world.” That’s something by John ‘Donohue in ‘Anam Cara’. That struck me particularly strongly the other day when I was reading this book.

I create places in the landscape that are looks within places, places where deep introspection calls to you. I also create spaces that are looks without places, they’re places of projection. As you look out into the landscape from a particular place, it’s all about what can be in my life, where am I going, what’s ahead of me.

I try to honor the spirit of the land and the spirit of the human being that inhabits that land, and try to really create spaces that allow you both of those perspectives, and they’re quite different, and it’s part of the human journey. I think that the land in the landscape can really honor that journey through careful placement and careful consideration. You too can have a landscape that really speaks to who you really are and what you really want in this world.

I’m Ted Carter. If you’d like to contact me, I can be reached at ‘’.

Dr. Lisa: The Dr. Lisa Radio Hour and Podcast understands the importance of the health of the body, mind and spirit. Here to talk about the health of the body are Travis Beaulieu and Jim Greatorex of Premiere Sports Health, a Division of Black Bear Medical.

Jim: What are you doing here?

Travis: I’m Travis. I’m here to install the Philips Lifeline you ordered for your home.

Jim: What is that thing?

Travis: It’s to make sure when you fall again, that you don’t lay there on the floor for hours before someone can come and help you. Your daughter said that you both agreed it was a good idea.

Jim: I don’t know anything about it. You’re coming at me completely cold with this.

Travis: This is a common occurrence for us at Black Bear Medical, but it makes us even more of a reason to look into a personal emergency response system like the Philips Lifeline, designed for falls and other health issues where access to a phone isn’t possible. The Philips Lifeline provides peace of mind to families with someone suffering from all types of medical conditions, including Alzheimer’s.

With memory, thinking and behavior all changing, this emergency response system can help someone you love who may fall and have no sense of where they are, or who can help them.

Visit us at ‘’ for more information on this and our over 900 other products to help keep you safe, secure and independent. Black Bear Medical, it’s your life, define it your way.

Dr. Lisa: Now, Mr. Duff, they call Alzheimer’s ‘The long goodbye’. This process started when Anne was 57.

Leon: About, yes.

Dr. Lisa: You took care of her for 10 years. What was that like to know that she had had a father and other relatives that had died of Alzheimer’s, that this disease was going to be what it was and that it wasn’t going to get any better, and that you are going to lose this woman you had known since your high school years?

Leon: I realized I’d already lost her because she couldn’t communicate with me, she couldn’t call me by name, and she would be puzzled with one of our kids came to visit about, “Who is this?” I lost her early and I knew it and we had experienced that with her father as well. To what degree, she really understood that I can’t tell you because it couldn’t communicate that. I kept her at home as long as I could, I got hospital bed sheets and things like that because there were accidents and whatever, and then finally, I said, “I cannot do this anymore.”

One of my daughters and I explored some nursing homes. Anne’s mother who was about 91 at the time is still living independently at home in Houlton, begged me to put her in the nursing home up there. She said, “Then I can go and visit.” That was three hours away from me and I want to say two things about that. That was an absolute excellent decision that I made to put her up there for her mother and for me, because I was worn out. I dropped 30 pounds taking care of her at home, and the emotional impact is I didn’t care if I ate or not. Those are routine kinds of things. It wasn’t that I was in denial, it’s that it’s too big a weight.

Giving care to someone who has dementia is very different than taking care of someone who just has, I must say, Hodgkin’s Disease or something because I’ve had experience with that as well.

Dr. Lisa: Can I read something from this book?

Leon: Yes. Sure.

Dr. Lisa: This book is ‘A Healing Touch: True Stories of Life, Death and Hospice’. This is a fundraiser that Richard Russo, Pulitzer Prize winning author and friend of yours wrote to benefit the hospice volunteers of the Waterville Area. This is a story that he tells about you.

“When he was 10, one of his many jobs was driving the tractor, and one particular autumn found him harrowing a field long after dark. It was bitter cold, frightening work for a kid all alone on a tractor travelling over unlevel terrain. The tractors had lamp shown off into black woods that surround the sloping field on three sides, occasionally locating bright eyes among the trees. A cat’s eyes? A dog’s? A deer’s? A bear’s? No, probably not a bear’s, but maybe if it was a bear, could he outrun it? No. Even trying would risk death or dismemberment. You don’t jump down from a tractor in the dark, not when it’s trailing a harrow. Lee doesn’t remember how much of the field he’d worked when the pin that attached the harrow to the tractor either broke or popped free, but he heard it go and felt the harrow detached. He also knew that it was pointless to search in the pitch darkness for a pin that was probably broken anyway. He knew his father would not be pleased, but what choice did he have? There was nothing to do but drive the tractor home. He remembers thinking, “I can’t reverse what’s happened. I can’t control it. It’s gone.” When he got home, his father was more than displeased. “You don’t come home with the job undone,” he explained. Life demanded that you be resourceful. Problems had solutions. He should have found a way. He’d not only failed, he’d done the one unforgiveable thing, he hadn’t tried.”

Is that a very interesting thing to be a 10-year old and being told that there’s always got to be a solution, and then to be several decades later, a man whose wife is diagnosed with Alzheimer’s disease and not be able to find a solution?

Leon: There isn’t a solution. There is a process that you have to go through and hope for the best ending. My father was the one who said, “Fix it up. Wear it out. Make it do or do without,” which means that instilled in me was look at the situation and find a way to address it, to resolve it if you can.

I think my upbringing was extremely valuable in times of crisis, because it is a crisis, even in my work as a Superintendent, there were times when there was crisis, and how do you go about dealing with it.

One of the things that I think I do is listen and ask questions and ask for help. That usually gets a much better resolution to the issue. It reminds me that a person with dementia often mixes up days and hours and whatever … “Today is Sunday. We’ve got to go some place. Well, it’s Wednesday.” It doesn’t make any difference to the dementia person and I have seen the caregivers try to correct that.

I learned that it’s okay to lie because it doesn’t make any difference, and in fact it only aggravates because they’re being corrected and corrected and corrected. I’ve used that in my hospice work very, very effectively, and I think that that is helpful.

Dr. Lisa: Let’s talk about your hospice work and about volunteering, because I know that this is something that has been very important to you. Just for example, we know that 37,000 Mainers are struggling with Alzheimer’s disease, and that’s just one group that needs care. There are lots of other people that need help including the caregivers of the people who need help. You’ve been not only the President of the Hospice Volunteers of the Waterville Area, you also have served community impact teams for the greater Waterville Area at United Way, and also the Kennebec Behavioral Health Foundation Board in the finance committee. You’re somebody who really believes in volunteering. Why is volunteering so important and what type of difference can people make?

Leon: I adopted the motto that, “As long as I am able, I want to make a difference.” If I have some experience background, talent or whatever that I can give, then I want to do that. I was invited to join hospice probably a year after Anne died just before she turned 66 years old. By the way, her mother died about a year before Anne died, and we did not tell her, because it didn’t make any difference and we didn’t want to add anything to her stress.

By the way, an important thing as a volunteer is you need to be very cautious about what you talk about in the presence of someone who has dementia, because they can’t respond but I don’t know whether they process it in any way or not, so you don’t do that. All that you chat is fun, friendly and caring.

The executive director of Hospice at the time who knew Anne invited me. What attracted me really to hospice was the support groups that they run for people who have lost a loved one primarily or someone who is going through a process at the present time. Those are dynamite and effective.

I took the training and to be sure I understood in all of that. It is absolutely essential in my opinion to make a difference in whatever way it is, whether it’s fixing a garage door for an old lady which I did yesterday, or staying overnight as I did a few weeks ago for a man who has severe Hodgkin’s Disease, and I just continue to do that. United Way is also a group. I serve on one of the three community impact teams which recommends the support, financial support for agencies and whatever around the area. United Way for example does a great job of making connections between groups to avoid duplication and things like that, and then Kennebec Behavioral Health of course serves clients who are in desperate need usually. Serving on the boards is just making kind of policy decisions but I see that as well.

I have a quote that I want to give to you. My definition of a volunteer and I didn’t originate this. I don’t know where I got it, but it’s stuck in my head and I use it a lot, “A volunteer is a person who will do for nothing what most people won’t do for anything.”

Dr. Lisa: Mr. Duff, we know that your time is very valuable and we’re very glad that you’ve spent time talking with us today. We encourage people who are listening to go online, learn more about the Hospice Volunteers of the Waterville Area. Learn more about the greater Waterville Area at United Way or perhaps the Kennebec Behavioral Health Foundation. Also, I was very moved by the book edited by Richard Russo, ‘A Healing Touch: True Stories of Life, Death and Hospice’ which is a fundraiser for Hospice Volunteers of the Waterville Area, so I encourage our listeners to find a copy of this book, read your story and other stories like it. Thank you so much for all the work that you’re doing and all the volunteer work that you’ve made the world a brighter place by being a part of.

Leon: If I can reach that goal, I will be very pleased and thank you so much for having me.

Dr. Lisa: You have been listening to the Dr. Lisa Radio Hour and Podcast, show number 114, ‘Alzheimer’s’. Our guests have included Dr. Tess Gerritsen and Leon Duff. For more information on our guests and extended interviews, visit ‘’.

The Dr. Lisa Radio Hour and Podcast is downloadable for free on iTunes. For a preview of each week’s show, sign up for our e-newsletter and like our Dr. Lisa Facebook page. Follow me on Twitter and Pinterest and read my take on health and well-being on the bountiful blog.

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This is Dr. Lisa Belisle. I hope that you have enjoyed our ‘Alzheimer’s Show’. Thank you for allowing me to be a part of your day. May you have a bountiful life.

Male: The Dr. Lisa Radio Hour and Podcast is made possible with the support of the following generous sponsors; ‘Maine Magazine’, Marci Booth of Booth Maine, Apothecary by Design, Premiere Sports Health a division of Black Bear Medical, Dr. John Herzog of Orthopedic Specialists, Sea Bags, Mike LePage and Beth Franklin of RE/MAX Heritage, Ted Carter, Inspired Landscapes, and Tom Shepard of Shepard Financial.

The Dr. Lisa Radio Hour is recorded in the studio of ‘Maine Magazine’ at 75 Market Street, Portland, Maine. Our executive producers are Kevin Thomas and Dr. Lisa Belisle. Audio production and original music by John C. McCain. Our assistant producer is Leanne Ouimet. Our online producer is Katy Kelleher.

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