Transcript: BlogHer interview with Mary Ellen Geist

Podcast of the interview.

Karen- Hi BlogHer listeners, this is Karen Batchelor, contributing editor on midlife issues and today I am really pleased to be able to interview author and former reporter Mary Ellen Geist. Hi Mary Ellen.

Mary Ellen- Hi. How are you? Thanks so much for having me.

Karen- I am fine. Thanks for taking time to be here. I know your schedule is really crazy and we are going to talk a little bit about why that is but first I would like to give our listeners some background information on you.

Mary Ellen was raised in a family of musicians, writers and artists outside Detroit, Michigan, which is actually my hometown as well. Mary Ellen’s first job was in broad journalism as a reporter and anchor at WTZ radio in Michigan. She quickly moved from there to WJML radio and anchored the news. And then she eventually became news director and continued her love for writing with magazine articles and now her book. Mary Ellen moved to Los Angeles to explore the motion picture industry but later she returned to radio with a stint at KSWB in LA and 12 years at KGO radio in San Francisco. In 2004, she moved to New York City to be afternoon anchor at WCBS radio where she won many awards during her journalism career, her radio career and those include national and regional Edward R. Murrow awards and Associated Press awards for best news cast live coverage, investigative reporting and reporter of the year.

Then, in February 2005, Mary Ellen left WCBS radio and returned home to Michigan and that is what we are going to talk about today. Mary Ellen has been at home helping her mother care for her father, who has Alzheimer’s. And she has written a book about her experience as a caregiver with her father during these past years and it is called Measure of the Heart: a Father’s Alzheimer’s, a Daughter’s Return. And Mary Ellen divides her time between the family cabin on Walloon Lake in Michigan and her parent’s year-round home near Detroit.

Mary Ellen, I am so glad that you took time away from your dad today to talk with me and our BlogHer listeners. So welcome.

Mary Ellen- Thank you so much. I can hear my dad whistling downstairs, but my mother is taking care of him right now, so I do have some time here to talk with you. But yeah, my life is juggling, you know, so much and juggling care giving, which I know you know so much about Karen as well.

Karen- Yeah. Because I do have an 89-year-old mom who has dementia and who has had it for years. You know, when we first talked Mary Ellen, we definitely felt like we were soul sisters as we compared notes. But, there is something though that I think everyone is going to want to know. You could have easily, or maybe not so easily, we know about that, but you could have delegated the care of a parent with Alzheimer’s to someone else. But instead, you stepped up to be what I am going to call and what you call in your book, the designated daughter. So what made you climb off the ladder of success, and you were on the ladder of success, to make this kind of radical mid life transition?

Mary Ellen- You know, it is strange. Because I think that if I was in my mid twenties and I was starting out in my career, I really could not have done this. But I really thought that I had done so much that I wanted to do with my life, so it is an interesting thing. I really am not sure that I would recommend to many people to do what I did. I do not think that all adult daughters should come home and live with their parents. We are so lucky though. We all really love each other. We get along. But I had been the one, there is always one in every family I think, that gets in the car and leaves for the East Coast or the West Coast, especially if you live in the mid West. There is always one kid that leaves. I was the one that left and I was really gone for 20 years, LA, San Francisco, and then I was in New York and I had gone overseas to cover stories: the U. S. occupation of Haiti, the death of Princess Diana in London, I covered the Olympics in Sydney for ABC. So many wonderful things had happened and I finally won this big award; Reporter of the Year and I actually became morning anchor, which I had always set my sights on and then I was offered the job of afternoon anchor and it all looks really good but it also can be a trap. I was on a sort of hamster wheel, I think. I just felt like I should work, work, work. All I thought about was my work. It was how I identified myself. When I would go to parties, I would introduce myself with my call letters after my name, you know, Mary Ellen Geist, PFWB radio, Mary Ellen Geist, KGO radio. People told me it was rather obnoxious. I didn’t even have a pet. If I had a plant, it probably would have died because I wouldn’t have watered it. I didn’t have a mortgage on my house. I didn’t have a husband at the time, though there was a man that I was seeing and living with in New York City. And I have been married before. But all of a sudden you look at your life versus what is happening in your parent’s life and I think so many of my friends almost lived as if they didn’t have parents. And I think that you do sort of start functioning as a single career gal and it was all that mattered to me. I remember so well, I had invited some friends to visit me once in San Francisco and I wasn’t there when they came because I was out at a breaking news story. I had actually forgotten that they were coming. You just start forgetting about your emotional life, your personal life and I knew something was, at the same time as my life career-wise was going so well, personally I don’t think it was going all that well. And at the very same time that all of this is happening and I am questioning things, okay, maybe it was a mid life crisis, which I know you write a lot about and talk about, but I really started weighing my life against my parent’s lives and my father had been diagnosed with Alzheimer’s in 1994. My parent’s lives were going downward. I was visiting them a lot on the weekends from New York City and I knew I was making a difference in just the couple of days that I could be there. And all of a sudden, the things happening in my life, career wise, were not as important as the help that I could give to my mother and father and so I just up and left.

Karen- Well, you know, what you just described is what I think a lot of women in mid life are experiencing and I like to, instead of calling it a mid life crisis, it really is a mid life transformation when you start to get closer to your life value and your life purpose. And it is more about who you want to show up as in the world then what you want to do, you know, at a particular job. So you are really showing up in the world now as a champion of care giving and as a day-to-day care giver.

Mary Ellen- It is amazing to me because I had no plan when I did this. I mean, (Laughter) But I had no exit strategy and look what I found and look at the gift. I mean, I really do feel my father reach through his Alzheimer’s to give me the gift of this book. I had no idea what I was going to do and when I went to my boss at WCBS, he had moved me across the country at great expense, I am the new afternoon anchor at WCBS and I was just completely, I was unhappy and I couldn’t even explain why to anyone. Here I was, the number one market in New York City, I should have been just doing a jig everyday, living in a really cool part of the town and supposed to be enjoying New York City and it just wasn’t working. I went to my boss and said, look, I know you are going to think that I am crazy and I am so sorry, but I have to go home and help my father. And she could have been very angry. In fact, I was worried about law suits or something and instead she said, you know, I understand and she was also a woman around my same age, she is a little younger than I am, but she knew absolutely what I was going through and she had seen the grief that I was experiencing everyday because I was really worried about my mother and father. My father was in decline but I was really worried about my mother, who, as we all know, as caregivers are sort of these hidden sufferers in all this. A lot of people don’t know the strain that they put up with and that many of them actually lose their lives taking care of other people and I was worried that my mother was going to become on of those casualties. So I wanted to come home and they said would you mind writing about this for our WCBS blog, a journal entry or something and at first I said no. I didn’t think that was right and I thought it was too personal but then I came home and the first night I came home I went into the den that my father could no longer use. He couldn’t read any more. He couldn’t write any more, that was his big wooden desk in his den where he used to always work and I sort of felt like an interloper at first because I had moved into his space and I started writing. I put the journal piece up on the blog at WCBS and I got hundreds of responses. Now we are in dial-up but still, out in the country to the farmhouse I moved too, but I got so many responses that it crashed my computer and it was then I realized, I got more responses on that than on any breaking news story I had ever covered.

Karen- So that whole concept of writing about what you are going through is really powerful and let me just say, for those listeners who have not yet read Mary Ellen’s book, it is Measure of the Heart: a Father’s Alzheimer’s, a Daughter’s Return and I can tell you Mary Ellen, when I started reading, there were so many similarities that I think that by the third chapter I was sitting there in tears with a box of Kleenex because it was so powerful. There is so much in that day to day care giving that you really can’t describe to someone who hasn’t been through it, but you do such a great job of doing that in the book.

Mary Ellen- Thank you. I wanted people to understand. It isn’t all a “Debbie Downer” book. I want to make sure that everybody knows that.

Karen- Oh it is not, it is not.

Mary Ellen- It isn’t just about advice for care givers, but I also did want to put words to this strange place that I put myself in but it is a place that, there are 50 million care givers across the U.S. I hadn’t know that when I came home and 10 million of us are taking care of someone with Alzheimer’s Disease and I wanted to try to describe it, so I put it in the book. Alzheimer’s disease breaks your heart a little bit every day.

Karen- Every day.

Mary Ellen- People just suffer alone with this.

Karen- You know, I have described it as seeing a bright window with the sun shining in as your loved one and everyday the shade comes down just a little bit more and, you know, the light starts to dim. It is just really a difficult experience. Can you tell us a little bit about how you have come to grips with your father’s decline and really seeing it intimately on a day to day basis?

Mary Ellen- Maybe you never really come to grips with it but I think we all, caregivers all, I think there is one thing that we all have in common is that we have a bit of denial and maybe it helps us through our day because I still think, there is a part of me that thinks he is going to get well. And I know that is a delusion but everyday, this will help just a little bit or he will get better and I know someday I will know that there is nothing that I can do. But each day I feel like if I can just make him smile or sing a song and come back a little bit. And that’s the thing, when I first came home, well I am sort of like still and yet an aggressive assertive reporter and I came home and was like okay, here is what we are going to do. And I am going to fix it all. I am going to help my mother. I am going to help my father. And I thought this is going to be great and we will do this and I had schedules and everything. And I really was much too aggressive and assertive when I came home but we had a task at hand, which you and I have already discussed, about the knee surgery. My father had to have both his knees replaced and this was one of the things that helped me come home because I realized there was no way my mother could do rehab and take care of my father after surgery or even get him through the hospital experience. I mean when you have someone with Alzheimer’s going into the hospital and going under anesthetic, it was really frightening. So when I first got home that wasn’t happening right away but we were preparing for it and in a way I think that was good because we synced up our Franklin Planners together. We had our calendars in front of us. We had doctor’s appointments everyday. It was a full time job for 2 people getting my father ready for surgery. I truly do not know how people do this who are in the sandwich generation or even just a spouse alone doing this but I mean, how does someone have a job and take care of someone like this? I have no idea. How does someone take care of little kids and do this? I really honor anybody, I mean, I just threw myself into this one job and between my mother and I we were exhausted and continue to be exhausted at the end of the day after being alone with my father. But anyway, at first we got ready, so I was in a pattern of things and I actually put together, because my father is a singer and I am a singer and singing and music mean so much to my father, I incorporated music into absolutely every chore. That was one of the first things I did. I mean, you sing in the morning to get him out of bed.

Karen- You did just mention that he was whistling downstairs.

Mary Ellen- Yes, downstairs. There is constantly music and it has become obsessive of late. I can tell you some more about that later because it is quite funny what has happened about the music. But also at the beginning, when I first came home, it was a lifesaver and when we drive around in the car, we listen to CDs. We harmonize together. I harmonize with him. When he is in the bathroom I will sing outside the door so he will come out the door in the right way instead of walking into the shower. I sing to get him out to the car. I play music and we do physical therapy as well. He is a very physical guy and even though he didn’t know what tennis was when I came home, when you take him out on the court and you hand the racket to him he was like what is this? And then his hand will grasp the racket and he will slam it across the net and he is really a great tennis player.

Karen- Was he a great tennis player before?

Mary Ellen- Yes he was, and a golfer.

Karen- So he has some of that still in his memory bank, so to speak.

Mary Ellen- Golf, Frisbee, tennis, and music they are all there. Nothing else really, not much else anymore, but its all there. It is amazing.

Karen- Well you talk about caring for your dad at home and I know that the decision that you made and a lot of people have determined that they need to care for their loved one with Alzheimer’s or dementia in an outside facility. Did you ever think about doing that? Have you guys had that experience?

Mary Ellen- Taking him to a facility?

Karen- Uh huh.

Mary Ellen- We did it. In January. We had been home, I had been home with my father for 3 years. My mother had taken care of him alone for 10 years before I came home, so we were nearing 14 years that he had been diagnosed with dementia, that is where we are right now, but by January, I knew that I was in danger of becoming one of those adult children that comes home and never leaves. I think we all know those people and they never really get back on their feet and get a job and I was really worried about my own future. I was worried about my mother’s future too, because if I went and got a job or did other things that would take me away, as the book is now taking me away to do other things, she would be left holding the bag and she was very exhausted. I became really, really worried about my mother’s physical health as well as emotional. I wanted her to have another chapter in her life. My family, we all got together and we decided that we would move my father to a facility about 10 minutes away.

Karen- That is a difficult decision to make.

Mary Ellen- It was. And it was actually one of the worst things I have ever been through. I mean, they were all, I am sure that this facility, it is an assisted-living facility, which has a downstairs area for people who are pretty much normal or in the beginning stage of Alzheimer’s Disease and then it has on the fourth floor, a dementia unit and Alzheimer’s unit. We thought we would put Dad in assisted-living and we had forgotten because my father is a musician and music accompanies him all the time, he whistles from the moment he wakes up until he goes to sleep. So we put him in this facility and it was very difficult. We thought he would be wonderful downstairs. At first he seemed very happy. There was music. He was having lunch, breakfast and dinner with people. By the fourth day no one was sitting with him anymore. He became morose. He was whistling alone in the corner. He refused to eat. He refused to do much of anything. We knew that something was very wrong. My mother went to visit him at the facility, went to his table, and discovered that people there, we had forgotten completely that he whistled from the moment he gets up until he goes to sleep.

Karen- So people were disturbed by that.

Mary Ellen- They were very disturbed. One guy said I am going to stuff a rag in his mouth. Another guy said I won’t go anywhere near that guy. And actually I saw a group of women ganging up on him. I thought they were going to like, be violent with him to make him stop whistling. And the people in the facility said he had to go upstairs to the Alzheimer’s unit. So we took him up there where people are much further along then he is. And he declined quite quickly. He didn’t want to eat. He didn’t want to walk anymore. When I would go get him to take him somewhere I had to put him in a wheelchair. He refused to go anywhere. He became frightened of the outside world. I was told by the people there that he did not know how to do anything. And then I knew things were bad when I called him the day before Father’s Day and I said Dad, I am coming to see you and I would call him and harmonize on the phone the whole time I was away. I did not go see him everyday. The days that I wasn’t there with him I would sing and harmonize with him on the phone. He refused to sing with me.

Karen- You knew something was wrong.

Mary Ellen- I knew something was very wrong and my older sister got him and kidnapped him and brought him home. Within 2 hours he was smiling and singing. I just think he needed to be back home. Three days later he went and played tennis with his grandsons. He is playing Frisbee. He gained 12 pounds. He has been singing with us all this summer and he had a really, really good summer. The last week, not so good, but we brought him home and got another summer with my father and I am so glad that we did that.

Karen- Now, it is such a lesson, you know, that when you have the experience of being a care giver, you do try different ways to provide the best care you can but some of them don’t work and you have to be able to say, okay, this was a mistake and we are going to move on from here. So it sounds like you made that transition pretty well.

Mary Ellen- It was hard to do that. And again, my mother, here I am talking on the phone right now to you and my mother is alone downstairs with my father and I know that is very difficult and when I go away she is trapped with him. I mean, I hate to put it like that, but we do have someone in the house helping but I think what I just told you about is that proof that, you know, the family’s love it means so much and you also have the sense that no one else can do it as well as you can. However, that is a trap at the same time. I know that at some point we are going to have to say we can’t do this anymore but there is nothing like family love and if there is anyway you can do this with your loved one, you know, I would really recommend it. The problem is that most people can not take a huge risk the way I did.

Karen- How is your father doing now? And how is your mom?

Mary Ellen- I think we are sort of in that stasis, an in between stage. We had a great summer where the whole family was here helping. We had brother-in-laws and grand children and my sisters were here. They are all gone. They just all went back to their jobs and, I am sorry, there is a call waiting beeping noise, forgive me. We are wondering what to do next and we just don’t know. So we are looking at the possibility of bringing someone into the home more often to start off with and then we are looking at places where he could go full time to live near our place in northern Michigan.

Karen- Now I mentioned to you when we talked the first time that, and I just learned about, this summer I just learned about a group home for Alzheimer’s patients and we actually moved my mom from a larger assisted facility to a group home where there are only several other people and a caregiver and it has worked out a lot better for her. So.

Mary Ellen- That, to me, after what we saw, I mean you have a situation where you are showering 62 people at the same time first thing in the morning. That is when bad things happen. And I think that a situation of like 10-12 people, something like that would be good and there is also a very good forward-thinking progressive facility that is involved with the Eden Method and the Montessori Method and I am excited about these things. There is a change right now.

Karen- Well you know, let’s talk a little bit about the different methods of caring for Alzheimer’s that you are seeing or maybe actually creating because we talked in our first conversation about music therapy and how you have seen that become really a life line between your dad and the rest of the world. Can you tell us more about that?

Mary Ellen- Music has been the thing that really sustains us and is a thread. It is a link of communication between my father and us and perhaps the rest of the world. He just performed with a 12 man singing group called the Grunyons last April. He sang with the University of Michigan Glee Club Friar’s Group just a month ago up here in northern Michigan. When he gets on the stage, he becomes the person he was before Alzheimer’s. It is an incredible thing to watch. We all sang together as an a capella group, my family, my sisters and I. So my older sister, my younger sister, Libby and Allison, my mother, father and I and we sang around the Detroit area and I think my father attached his identity to the singing more than the musician in him, more than anything he did. He was president of E&E Engineering, an industrial distribution firm in Detroit but I think he took the most pride in his identity as a musician. So that has just stayed with him and even when everything else falls away, he still knows the words to all the songs he has ever sung, almost all.

Karen- Isn’t that great.

Mary Ellen- So that is how we talk to each other and in the morning when I know he is really groggy, it is as if he doesn’t have any batteries, when I sing the “Wee small hours of the morning”, his favorite Frank Sinatra tune, he opens his eyes. He starts harmonizing perfect baritone part but I also really believe I see him connect with me. And also we will say the lyrics of songs to him and that to him is conversation. And I really wish that people knew the power of music. I know it can’t work for everyone but I have been told that even people who are tone deaf, if they have a song in their lives that means something to them, if they, as an elderly person or someone with Alzheimer’s, and you can think they are catatonic and there is nothing going on anymore, if you bring their favorite song to the table in some way, either singing it or playing a CD, it can actually open new channels into the brain. I have gotten reports and interviewed people for the book, people who thought they couldn’t talk anymore and they would sing their favorite song and they would come alive and start mouthing the words and actually use music as a way to get that person to speak again. So I think we are just beginning to understand the power of music. I know it has a key, it makes a huge difference with people like my father and that is why I consulted with Dr. Oliver Sacks, a neurologist who wrote the book Awakenings that was made into a movie with Robert DeNiro and Robin Williams.

Karen- Right, Robin Williams.

Mary Ellen- And he really has been exploring this and just wrote a book MUSICOPHILIA: Tales of Music and the Brain about the power of music. He interviewed my dad for a part of his book and then I used our interview and went to go see him in New York City. I used that in the book too to try to explain the power of music but even though Dr. Sacks has done volumes and volumes of research and has interviewed hundreds of people, we still can’t get a clear answer as to why music has such power and influence and actually opens channels in the brain of people with neurological diseases.

Karen- I saw the same thing with my mom in assisted-living. When they would have kind of a music singing circle and they would each have their little notebooks of different songs and they were songs from the twenties and thirties and I tell you it was amazing because people who I never even saw speak in all the times we would visit my mom, we saw people singing songs and I saw my mom singing songs that I didn’t even know she knew and she didn’t even have to look at the words. So.

Mary Ellen- It is amazing and I

Karen- It opens them up.

Mary Ellen- Yeah. It really does and I wish that music was used more in the facilities because I think it makes such a difference. It can also calm people. It can comfort them. And I would like to actually help to try to bring more music into facilities like the one my father has been in and also just thinking of ways that you could bring physical therapy and music therapy into the home. Perhaps four hours of talk therapy, music therapy and physical therapy that you could actually bring into someone’s home on a regular basis or bring to nursing homes on a regular basis.

Karen- Well, maybe there is a recording that is coming after the book. What do you think?

Mary Ellen- You never know.

Karen- Well one of the things that made me really smile in the book was when you talked about making Alzheimer’s chicken with your dad. What was Alzheimer’s chicken and why does it have such meaning to you and Woody?

Mary Ellen- Well I think, this is what we talked about with the music. I think you forget. Sometimes you become so depressed also and it is a kind of in your face grief that this person can’t talk with you and you forget. To me, I mean one of the lessons that I learned from coming home was there is always a way to communicate. Whether it is just holding my father’s hand or looking into his eyes and singing a song but there are days when you are just sitting there and you are down in the dumps and you really can’t do anything in the house anymore. I mean, when I came home he could do vacuuming, he could do folding, we did certain things together like make the beds. He can still do that kind of but not very much. But I think you stop asking the person to help you because it is so tedious. Okay, you do it like this, you do it like this. Well then I realized that one of the reason you start axing that person from your daily routines and the things you used to do together is because they don’t do them the way you do them. I said, you know what? We have to change our standards. So I often had him come and help me hang up my clothes in my closet and they are all hung upside down and wrinkly and

Karen- So do laundry. Alzheimer’s patients love laundry.

Mary Ellen- Every facility I go to, there is laundry folding. I wrote in the book about how it is like watching some sort of tragic strange dance. They move together. They fold together. That laundry thing is familiar. But my father used to help us in the kitchen chop vegetables and we stopped doing it. I said, wait a minute, we only had him stop doing it because they were all uneven and it didn’t look good. Well who cares what it looks like. I said come on dad, and he could still chop, even though he has Alzheimer’s and this is not recommended for everyone because it can be dangerous, but I gave him sort of a dull knife and he chopped carrots. And they are all different sizes so he cut up carrots and celery. He helped me chopped the herbs, I just put them all down and we make this chicken together that you pour red wine over, that always helps, and some olive oil and lemon juice on it and he helps make it now. Now the vegetables are all uneven but who cares and you put this together and he knows somehow, I believe, he really knew when the last time he did this that he was helping me make this dinner for everyone and it made him feel useful in the house and of course then we sang while we are chopping up the vegetables all unevenly. I did not tell him don’t do it that way or try to make the celery be all even, you know, you just let it be, let it be, let it be, so now it is his brand of Alzheimer’s chicken I call it and we make the chicken together and it fills the house with a wonderful aroma and the recipe is in the book and it is just an example of how I think everyone can think of ways to include someone with Alzheimer’s in their lives. But you have to change your standards and that is okay.

Karen- They really do want to be helpful and we see that in my mom. We have her over for like a family dinner or something and she wants to come and cook in the kitchen and in the past we have said oh mom you don’t have to do that anymore we do it for you but I didn’t really connect with it until I read that chapter about Alzheimer’s chicken and she really gets a kick out of setting the table, so now we are letting her do those things.

Mary Ellen- Maybe the silverware won’t be in the right place but that is okay.

Karen- Yeah. Who cares. We are all sitting there together. Who cares. That is the main thing. Well, tell me, how does the caregiving experience allow you time and space to think about what is next for you and you just mentioned a little while ago that you were really wondering, you know, you kind of have to keep that portal open so that you don’t become lost in the Alzheimer’s experience, so you know, what is next for you Mary Ellen?

Mary Ellen- I don’t know. I really don’t. I don’t. I am being really honest with you. I think we are seeing a new phase in my father. And there is quite a bit of decline in the last couple of weeks, since everyone left. I think what is interesting about this time is that the book has actually ended up being, I think, a gift in so many ways and one of those gifts is I bring my mother and father with me to book signings.

Karen- Oh, that is so great.

Mary Ellen- And my father sang at the last 2 book signings. I said Dad, can you sing with me? And people loved hearing him. I mean, he is wonderful. He harmonizes so well and he remembers all the songs and it was actually really good for him and good for my mother. So I am incorporating my mother and father into this time of my life and that way my mother doesn’t get left alone taking care of my dad and it is sort of an event. I don’t know how long we can still do that and I am going to be involved with, I have been asked to write some magazine articles in particular about the music aspect of this all.

Karen- That is so fascinating.

Mary Ellen- It really is because he is an incredible, incredible case. And now he is doing something new too. When he doesn’t know the words to songs or he has never heard a song before that he hears on the radio, he makes up words and they rhyme. So, he has made up a kind of Alzheimer’s rap that he is doing right now that is very interesting.

Karen- You ought to record that and have Woody’s songs.

Mary Ellen- Really. (laughter) Instead of recording a police chief or somebody at the scene of a fire, I am recording my father singing. But, um, I would really would like to be involved more in helping to improve the quality of life for Alzheimer’s patients. I continue to write. The big dilemma is how do you take care of yourself, and so between the book tour and taking care of Dad, it can be a little hectic and so my mother and I are going to try to enter into some sort of regular plan with either a caregiver in the house or institution but I think, you bring up something very important which is caregivers forget about themselves.

Karen- They do.

Mary Ellen- And that is one of the things that I talk about in the book that I think is so important. You have too. Even if you don’t want too. Like you get almost addicted to your role as caregiver and you don’t want to leave and you have to get away to breathe. Even if it is in the other room, you know, even to go take a bath. I really recommend exercising. That is one of the best things that you can possibly do but force yourself to go away, even if it is for just an hour. And some places, a lot of people say they can’t leave because it costs money, the Area Agency on Aging, which is in every county, I believe, in the United States, often has respite care for as little as $5.00 for just 4 hours. They come in once a week. They will check the patient’s blood pressure and other things and just be with them for 4 hours so you can get away. There are many things like this that people don’t realize that you can tap into so you can break the pattern, the everyday depressing pattern of your life. The repetition, the taking care of daily tasks and daily living for that person, you have to get away and think about yourself.

Karen- And you know you raise an important point about caregivers taking care of themselves because for our generation of baby boomers, there is going to be so many of us that are going to be providing caregiving as many, many, many millions of people move into the realm of Alzheimer’s and dementia and other illnesses of aging. So we have to have a game plan. And.

Mary Ellen- I don’t think we have one. One in eight baby boomers are going to get Alzheimer’s Disease. It is the sixth leading cause of death right now in the United States. 5.1 million people have it right now but they say by 2050, the Alzheimer’s Association predicts there will be about 16 million people with Alzheimer’s Disease and we have to make a plan because what I see, the paradigm of the institutions, it doesn’t work for me. I think we have to start thinking about what we are going to do. What is going to be right for us and we have to take care of ourselves as well and I do think that is so important. Hey, getting exercise now and some of the music therapists that I talk to say iPods are great because for all of us, when we get older, we are going to have our tune list with us to bring us back into the world recorded on our iPods.

Karen- Isn’t that great. I have my list already.(laughter)

I think that we tend to think, at least up until now, we have tended to think of Alzheimer’s as, you know, a disease of those people who are much older than us but my best friend, who is my age, 57, was diagnosed with early onset Alzheimer’s 2 years ago and so, you know, I just talked with her this morning. She is losing some speech already. She was in news reporting like you and so it is really something that we can’t defer as an issue of old age. It is like right up front and center for us right now. So, I know we are getting close to the end of our time together, but if there were, you know, 2 or 3 things that you have learned through this experience of caring for your dad that you could pass on as advice to the rest of us what would those things be?

Mary Ellen- You know, I found this quote recently from Mother Theresa that I really love and I wish I had had it before I wrote the book, before I came home actually I wish I had had it. But it goes like this: “If we have no peace it is because we have forgotten we belong to each other.” And since I came home I think that one of the biggest things I have learned is that I belong to my parents and they belong to me and I think that so many of my friends don’t realize, I think they forget, you know, how much we belong to each other and once you sort of surrender that and you say, hey, I am responsible, I belong, this has really expanded my heart. It has helped me belong to the world, I think, in a whole new way. I also believe that doing this weird thing I have done, which nobody, they used to call me “danger girl” to be on breaking stories, that was my whole life and I believe taking this huge leap of faith, which I had no plan and I had no idea what I was going to do when I came home, I really think that this act of kindness inspires others. It is like this pebble, you know, in a calm lake and you drop the pebble and the rings go out and out and continue and influence others. I really think that I am amazed at the kindness of so many people that I have met along the way on this strange journey that I have gone on.

I think the second thing I have learned is how strong my mother’s and father’s love is. I really admire them and I would like to have a love like that sometime.

The third thing, it is a gift to take care of someone else. I had no idea I would feel that way but I really do. I have really found out who I am. I think you find out who you are when you do something like this and also you find out who you are when you slow down and you allow yourself to slow down. I mean my life goes really slowly now. (laughter)

Karen- But you really have found yourself.

Mary Ellen- I really feel like I have.

Karen¬ Well I have to tell you. I am going to be looking for a book signing when you are down in the area around Detroit because I want to come and meet Woody and I hope that you will let him sign my dog-eared copy of Measure of the Heart: a Father’s Alzheimer’s, a Daughter’s Return and everyone in the listening audience, I hope you will go out and get the book. It is a great read. One that you will pass on to friends and it really is the blue print for how we can look at care giving on an ongoing basis. So Mary Ellen, I thank you so much for taking the time away from your dad to talk with us today. And I am looking forward to more, hopefully the Woody album and whatever is coming next.

Mary Ellen- Thank you so much.

Karen- Thank you.