Episode 11 Transcript
Coming up on a special edition of "Life (Part 2)," the new face of Alzheimer's disease. We meet an extraordinary 64-year-old woman who is bravely coping with the early stages of a disease we all dread. It's a perspective on Alzheimer's you've never seen before. Plus, Billy Collins, former Poet Laureate of the United States with a poignant look at fading memories. Coming up on a special edition of "Life (Part 2)."
(woman) Major funding for "Life (Part 2)" was provided by The Atlantic Philanthropies-engaging many to improve the lives of and achieve health and economic security for older adults. And by MetLife Foundation-- celebrating the wisdom, talent, and experience of older adults. MetLife Foundation proudly supports "Life (Part 2)."
[bass, & plucked strings play in playful rhythm; bright in tone]
Welcome to a special edition of "Life (Part 2)." I'm Robert Lipsyte. Alzheimer's disease may well be first on the list of what we fear most about growing old, and today as the diagnostic process improves, more people are becoming aware earlier that they have the disease. Mary Ann Becklenberg was 62 when she learned that she was in the early stage of Alzheimer's. She had to leave the job she loved as a clinical social worker in late-term hospice care. But Mary Ann is meeting the disease head on. She's an early-stage advisor for the Alzheimer's Association. Her attitude is a model for the 10 million boomers who will likely have the disease. We went to Indiana to see how this extraordinary woman, her family and friends, are coping.
(Mary Ann Becklenberg) The fear is losing myself; to know that you won't bring this self to the end stage of your life. That I won't be clear about what's happening to me. It's the ultimate loss, and I don't know if everybody could articulate that...but I think they know; it's a knowing thing. They think not that-- anything-- I think that's how people feel--anything but this disease.
(John Becklenberg) Mary Ann was proactive and said I really need some professional help. She went and was given some tests, both mental and physical with some MRIs and other things, and was given an evaluation that looked like it might be early onset of something. We had said that our son had recommended a vacation, a long vacation, and the doctor said that's an excellent idea. We'll be able to see whether stress is really at the basis of this, or it's something else. So we went out and Mary Ann had a great, restful time by herself for the first 3 weeks. I went out for the last week, and we had a wonderful time, and came back. Mary Ann said after about a week, she sat on the bed and said, "I really had a great time in California. I'm so sorry that you couldn't make it." [with emotion] And I was shocked and became a believer that something serious, serious was going on.
(Adrianne May) When Mary Ann came to head our transitions program it really was a very demanding position and a real unique position, and we needed to find the right individual for it, and immediately I thought that's it--Mary Ann.
(Mary Ann Becklenberg) I had a lot of responsibility, and I had always met the responsibilities and not been overwhelmed by them. But all of a sudden, it wasn't all of a sudden, of course, but over time I began to realize that I wasn't the gal I used to be. It was different inside my head.
(Mary Ann Becklenberg) What did you see? Did you see... Did you see it before I saw?
(man) It wasn't any distinct thing that we noticed. I don't think so. It was just so gradual over time, and if you weren't looking for it, I'm not sure that we would've recognized it.
(woman) You dotted your i's and crossed your t's, but when you would come to Cynthia and I to talk about a referral for a volunteer, I noticed your forms weren't, you didn't dot your i's, you didn't cross your t's. There were things missing.
(Mary Ann Becklenberg) I did not have the diagnosis then as I left, but I went immediately then for evaluation. But leaving was... awful...and desperately sad for me.
(Michael McCauley) It hurts to see when she struggles. Um... There are incidences that just tug at my heart. But she's still Mary Ann. She's still smarter than I am; she's still classier than I am! And it's like thinking of my sister who went through something that I can't fix. I want to be able to fix it, and I can't fix it.
(Mary Ann Becklenberg) You could do whatever you want.
(Mary O'Donnell) It's supposed to be something that maybe I would deal with when I'm 50 and when she's 85. There are still times where I don't feel in any way angry with her, but I feel angry at the disease that it's taking some of those parts away from our regular relationship and dynamic, where I would like to think that if we had a wonderful afternoon together, that would have been a special enough time to break through the disease. That those times should be so magical, meaningful for both of us that it should be able to sink through the disease, which I know is not at all logical. Oh, I remember that one.
(Mary Ann Becklenberg) Oh, yeah.
(John Becklenberg) Catch it over there?
(Mary Ann Becklenberg) I do. I do.
(Mary Ann Becklenberg) I think that it's been a reasonably good ride. I mean, it's been a wonderful ride as an individual, [with much emotion] and I would hope, and I know certainly in my family, that I've met their expectations of me in a reasonably good way. And I also hope, Alzheimer's out of it, that I have taught them that it's okay to have a flaw or two. That we're not striving for perfection. I'm a bit of a striver, and I am thinking about that just now. You don't have to be at the top of your game all the time. And this disease has taught me humility that way. So I'm not "re" I don't think. I'm not redoing, redesigning, reconstructing. I'm hoping to make meaning, and I've hoped to make meaning all the way along in my life.
(Robert Lipsyte) Mary Ann Becklenberg is here with us now. Thank so you much for being on "Life (Part 2)." I was looking at pictures of you with the wildflowers in the garden; you look so happy!
(Mary Ann Becklenberg) Yes. Well, I'm very happy in the garden. Gardens are just there, and there are no requirements. I find it a place of peace.
(Robert Lipsyte) Another thing that you had done all your life is reading.
(Mary Ann Becklenberg) Yes!
(Robert Lipsyte) Has that changed?
(Mary Ann Becklenberg) Oh, it's changed dramatically. I've always been a voracious reader, and I still am, but I can't remember the plot. I generally remember that this book, this story is pleasing. It's soothing, reading is soothing. So I continue to read, I go to the library, I choose. But I don't know whether it's the rhythm of the words, I suspect some of it is, that is soothing.
(Robert Lipsyte) I was wondering, in your work at the hospice, had you dealt with Alzheimer's patients?
(Mary Ann Becklenberg) Oh, very definitely.
(Robert Lipsyte) Yeah?
(Mary Ann Becklenberg) Yes. Hospice work as you know addresses the needs of individuals and their families when it is the end, the end period of months, so I saw end stage disease. And one of the sadnesses, because, of course, I can't remember, is whether I talked to those families, not only about the crisis of losing a loved one, but tell me, what was your mother like? Because that's the story we all need to tell about our lives. I hope that I did, and it's a sadness to me to not know whether I did.
(Robert Lipsyte) I can't believe that you didn't, I'm sure you did.
(Mary Ann Becklenberg) I would really like to think that I did.
(Robert Lipsyte) I'm sure that you did. Do you remember the first intimations that something was not quite right?
(Mary Ann Becklenberg) Very definitely I remember; it was in my work.
(Robert Lipsyte) How old were you at this point?
(Mary Ann Becklenberg) Um, well, I am 60...
(Robert Lipsyte) You're 64 now.
(Mary Ann Becklenberg)...4 now, so it was probably 62, maybe 61. That's pretty early I'm learning. But I had always worked at breakneck speed, lots of excitement, and I found that I couldn't do that anymore. Very simple things, I would be talking with someone on the telephone, hang up, no clue. Who was that? What did we talk about? The people in my workplace, my dear colleagues, were beginning to, to take care of me saying, "See you this afternoon at the meeting at 3, Mary Ann." I had no clue, I had missed meetings, and so they began to care for me.
(Robert Lipsyte) They sensed something before you did.
(Mary Ann Becklenberg) I suspect they did.
(Robert Lipsyte) Yes.
(Mary Ann Becklenberg) Yes, because we, in that setting, were all very qualified professionals, self-motivated, took care of ourselves, did what we needed to do.
(Robert Lipsyte) As they picked up the slack, nobody grabbed you by the lapels and said check this out.
(Mary Ann Becklenberg) No, nobody did, but...
(Robert Lipsyte) You were too powerful a person, huh?
(Mary Ann Becklenberg) In retrospect, well, probably. I would've said, "What?"
(Robert Lipsyte) I get that feeling.
(Mary Ann Becklenberg)...at that stage. Assertive might be the word. Um, no one did, um... But then it became impossible for me to keep the ruse up. I felt, I've never said that, I felt that it was a ruse. That I was not what they were all seeing, that I wasn't authentic in meeting my responsibilities-- it was pretty awful.
(Robert Lipsyte) Yeah, I can imagine.
(Mary Ann Becklenberg) It was.
(Robert Lipsyte) So then at some point, you did.
(Mary Ann Becklenberg) I did, I simply resigned.
(Robert Lipsyte) Did you resign before you had a diagnosis?
(Mary Ann Becklenberg) Yes, I believe I did. Now, these are the fine points. I would say to you I believe that's accurate. But whether it was before or immediately afterwards, I was acutely aware of my memory and the lack of memory. It wasn't that I couldn't put the budget together. It all was a piece of it. I couldn't remember my people. I couldn't remember much. So I went to have that evaluated.
(Robert Lipsyte) At that point, was the word Alzheimer's floating in the back of your head?
(Mary Ann Becklenberg) Oh, yes, it was.
(Robert Lipsyte) And was that a dreadful...?
(Mary Ann Becklenberg) I had never known an early stage person, which has been one of the joys of my experience with the Alzheimer's Association. I am on what they call "The Early Stage Advisory Group." Sounds substantive.
(Robert Lipsyte) Sounds cutting edge to me.
(Mary Ann Becklenberg) It is cutting edge.
(Robert Lipsyte) Yeah.
(Mary Ann Becklenberg) It is cutting edge. And I'm thinking as I look at this table about the tables that I have sat around with that group, and it amazes me. I will say this and hope I can come back to this thought. It amazes me that when you look at us and speak with us as we are doing here, you would, one would think well, she seems fairly well together.
(Robert Lipsyte) Which I must tell you makes me think, in a troubled sort of way, if I met you at a cocktail party...
(Mary Ann Becklenberg) Yes, exactly. We'd have a fine conversation.
(Robert Lipsyte) We'd have a fine conversation. I would never know.
(Mary Ann Becklenberg) No.
(Robert Lipsyte) I guess you might not remember me.
(Mary Ann Becklenberg) I might not remember you. I would not remember your name, I might not remember we met.
(Robert Lipsyte) Oh, she didn't really like me after all!
(Mary Ann Becklenberg) She didn't pay much attention obviously. So, so you don't, you don't remember. I'm sorry, I lost my train of thought.
(Robert Lipsyet) Well, one of the things you were talking about was the people sitting around the table...
(Mary Ann Becklenberg) Yes!
(Robert Lipsyte)...and looking at them.
(Mary Ann Becklenberg) And listening to them!
(Robert Lipsyte) You were probably surprised that-- huh, they can't have Alzheimer's.
(Mary Ann Becklenberg) Well, I knew that we were all assembled, and I thought well, at the very least, we are at the Alzheimer's Association. I mean, they would not have gathered us together if there wasn't a common thread. So people were able to speak. It was a very energizing experience being with them. Of course, all kinds of support offered by the association, by everybody who was there, and it was quite something because it was joyful. [with emotion] I'm sorry. It was joyful because you knew that they knew.
We didn't have to ask each other how it was that we were there. We didn't have to say, how's your marriage? We didn't have to say, how is it with your children?
(Robert Lipsyte) Well, I can relate to that sitting around a table with other cancer survivors. You know, there's just some things that...
(Mary Ann Becklenberg) Right, you're a cancer survivor too.
(Robert Lipsyte) Also you can make jokes that you can't make with other people.
(Mary Ann Becklenberg) And it's wonderful to be able to laugh at yourself! I mean, one of the problems, one of the challenges is to keep humor in your life. You're right, I mean, you can laugh about things that you forget. And it's a humbling thing, because I'm sure like most of us if pushed, we would acknowledge that we have not necessarily been as gentle as we could be with other people in our lives.
(Robert Lipsyte) Talking about that, you had mentioned the question you don't have to ask at Alzheimer's, but I can ask it.
(Mary Ann Becklenberg) Sure.
(Robert Lipsyte) What about your marriage?
(Mary Ann Becklenberg) Oh! Well, I am married to... the world's gentlest, most supportive man. We have had, we have 3 wonderful children. We have had the usual ups and downs and challenges that every marriage goes through I think, but it is no longer a marriage of equals. The balance shifts from, in the most um, tiny details. Um, I don't remember. What is happening next in this hour? What is happening next in this day? What is happening this weekend?
(Robert Lipsyet) And he has to.
(Mary Ann Becklenberg) And he picks up the slack.
(Robert Lipsyte) Mary Ann, as you say this, I think the anger and frustration that must bubble up.
(Mary Ann Becklenberg) You're hearing that. You bet! I am angry. I'm really, really angry. Yeah. Day in, day out, it's not easy being married to me. I'm not always cheerful and dancing around, and I can't find things, and I don't remember the sequence. So our spouses pick up; John picks up for me. He is rarely short with me, and I am often short with him, which is not him, but my own frustration with my own self.
(Robert Lipsyte) Is there an advantage to knowing you have early stage Alzheimer's?
(Mary Ann Becklenberg) Oh, my goodness. As we say in our family, is the Pope Catholic? Yes! It's terribly important to know that you have the disease. If you know, then first of all, you do not feel that you are crazy, falling apart, inadequate, and terrified. You know that you have a disease that is a serious one, but that can be treated. What you want to do is just find out. If an individual really thinks something's a little off here with my game, whether it's in a work setting or at home or among friends, get it checked out. And if you're aware that it's memory, which I was as you can hear, before diagnosis, there are fine and finely-honed diagnostic tools available now.
(Robert Lipsyte) Let's say Mary Ann at 50, somehow I tell you this is going to happen, could you write a letter to yourself at 61? What would you tell yourself? The retreat? Are there things that you could tell yourself and other people?
(Mary Ann Becklenberg) I would say, and this has been the biggest challenge for me probably, walk gently. [with much emotion] Be gentle with yourself. This disease requires that you lower your expectations of yourself. And that's a hard thing for me to do, and I imagine it's a hard thing for everybody to do. But look to build your spirit, whatever that means to each of us individually. Find and be clear about what gives you consolation, be it the dirt if you can't even grow the flowers, but you like pulling the weeds. Pull the weeds. And beyond the doing, I'd say give yourself credit for it. Say to yourself, and I don't know that I'm there yet, you know, this was a day when you really took care of yourself. No one else would know it if they were following you around, but I would know. So I think that would be my recommendation as people enter probably mid life. But certainly that would hold people in good stead.
(Robert Lipsyte) When you're down, when you're angry and frustrated, is there something that you can do for yourself, or someplace you can go spiritually, physically?
(Mary Ann Becklenberg) Um... I go outside, whatever the weather, and I pray a lot. I believe in a loving God, and I believe in purpose for life. So I pray a lot, and that helps just in kind of a, "Come on, can we move on," I say to the good Lord. We've been in this place. Move on, show me the way and teach me, Lord, to be gentle with myself.
(Robert Lipsyte) I love that-- be gentle with yourself. Something that I guess we can all, we could all do that.
(Mary Ann Becklenberg) I think we could all use a dose of that along the way.
(Robert Lipsyte) Mary Ann, thank you so much for joining us on "Life (Part 2)."
(Mary Ann Becklenberg) Thank you for the privilege.
(Robert Lipsyte) There is a difference, of course, between Alzheimer's and the normal memory problems that we all seem to have in middle age. Billy Collins, the former Poet Laureate of the United States, has a bittersweet take on fading memories.
(Billy Collins) "Forgetfulness." "The name of the author is the first to go, followed obediently by the title, the plot, the heartbreaking conclusion, the entire novel, which suddenly becomes one you have never read, never even heard of. It is as if one by one the memories you used to harbor decided to retire to the southern hemisphere of the brain to a little fishing village where there are no phones. Long ago you kissed the names of the 9 muses good-bye, and you watched the quadratic equation pack its bag, and even now as you memorize the order of the planets, something else is slipping away, a state flower perhaps, the address of an uncle, the capital of Paraguay. Whatever it is you are struggling to remember, it is not poised on the tip of your tongue, not even lurking in some obscure corner of your spleen. It has floated away down a dark mythological river whose name begins with an L as far as you can recall, well on your own way to oblivion where you will join those who have forgotten even how to swim and how to ride a bicycle. No wonder you rise in the middle of the night to look up the date of a famous battle in a book on war. No wonder the moon in the window seems to have drifted out of a love poem that you used to know by heart."
(Robert Lipsyte) Oh, and before I forget, Billy Collins' latest book of poetry is called "Ballistics." For now, that's it for "Life (Part 2)." I'm Robert Lipsyte. Thanks for watching. See you next time, older and better.
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