[00:00:02] Speaker A: I got so upset, I just went out for a walk and happened to run into a neighbor.
And the neighbor said, are you okay? I said, no, no. I just don't know how to deal with it.
And he said, let me tell you something. I've had my challenges, too.
They may be different than yours, but the one thing I learned was an expression. And it's going to help you.
And he said, life is not about waiting for the storm to pass.
It's about learning to dance in the rain.
[00:00:45] Speaker B: Welcome to the Age of Aging, a show about living well with an aging brain. Produced by the Penn Memory center in the Michael Nadoff Communications Hub. I'm Terence Casey.
This is a special off season episode.
Last season we explored the experience of ambiguous loss, the particular grief of loving someone who is still here, but slowly becoming someone else. And after that episode aired, we kept thinking about a conversation our producer Jake Johnson had recorded that hadn't made it into the final cut. Not because it wasn't good enough, but because it was too complete to be a piece of something else. Margo Woodacre is an author, a former state senator, and for eight years, the primary caregiver for her husband Ernie, who was living with Alzheimer's.
But what makes her story different isn't the caregiving.
It's what came after the loss of identity that followed the loss of Ernie. The slow, sometimes painful work of asking, who am I? Now we're releasing this conversation as a standalone special episode between seasons because some stories deserve their own space, and this is one of them.
Here's Jake Johnson in conversation with Margaret Woodacre.
[00:02:02] Speaker A: I'm Margo Ewing Woodacre.
I am an author, a teacher.
I do a lot of public speaking. I've run courses. I was a former state legislator for Delaware. As a senator, I've kind of worn a lot of hats in my life. But the important piece here for the interview you today is I was married to a wonderful man, Ernie Woodacre, who unfortunately was diagnosed with Alzheimer's. So I cared for him for about eight years.
He has passed, but it's been quite an experience and I've been doing a lot of writing involving that.
[00:02:44] Speaker B: Yeah. Could you tell me a little bit about your story with your. With your husband?
[00:02:49] Speaker A: Sure. My husband was an executive with dupont. It was a second marriage for both of us and I met him right after I had gotten out of politics.
We had a great, good 15 years together. Ernie was 19 and a half years older. We traveled a lot. I still was working, teaching seminars and teaching college. So My life was quite busy. Still wrote a book at that time as my daughter was going off to college. So life was very busy. Ernie began to lose his memory in kind of the beginning of his 70s.
And I didn't know about it, but he was noticing it. I really didn't notice it until we were actually on a trip together. And I really started noticing that with directions, with questions being asked over and over again.
He had just gotten this brand new fancy camera with all the details, and we were on a trip, a safari, and it was a dream trip in Africa.
He could not work that darn thing, and I'm not the one to figure it out. But things like that started happening, and he just kept saying, you know, Margo, this is what happens when you get older. It's totally normal.
So that went on for a while, but finally we decided to go and talked to our doctor, and that's when he was diagnosed with mci, mild cognitive impairment. But our doctor originally said Alzheimer's. And that's when we got the surprise news.
After Ernie was diagnosed with Alzheimer's, of course, I didn't know what to do. I studied very little about it when I was getting my master's degree. But I started a blog.
So again, I'm one who likes to journal, so I was able to pull from some of those journals. And I started a blog called Married to Alzheimer's.
And that was great. It was a great outlet for me to speak what I was feeling inside. But after he passed away, that was a loss that I had never expected. I had lost my own identity.
And that's what this book is about. Because I had a hard time finding who I was.
Because you've changed, the world's changed, people have changed around you. And it was really a challenge.
[00:05:33] Speaker B: You know, we've talked a few times on this podcast about this idea of ambiguous loss for caregivers of somebody with dementia. The idea that somebody is kind of gone, but they're still present.
Could you talk a little bit about your experience with that?
[00:05:51] Speaker A: There was really a big fear process of, oh, my gosh, what do I do? How do I deal with this? How's life going to go ahead? Can I do this?
I had no idea. So the fear was what really reached me. At first, my challenge was how to deal with a changing personality. We had a great relationship. As I said, we traveled together.
Truly a love of my life.
But suddenly he. He changed. His personality changed. He went through an anger stage. And that anger stage angered me. I didn't know how to Deal with that. Then one day, just a blessing happened. He got very angry and actually threw something that went through the wall here in our new little house here in my 55 and above community.
I got so upset, I. I just went out for a walk and happened to run into a neighbor.
And the neighbor said, are you okay? I said, no, no. I just don't know how to deal with it. And he said, let me tell you something. I've had my challenges, too.
They may be different than yours, but the one thing I learned was an expression, and it's going to help you. And he said, life is not about waiting for the storm to pass. It's about learning to dance in the rain.
And Jake, that saved my life, and it saved Ernie's life, too. It was then that I realized, I'm the one.
I'm the one that's got to be dancing to get him to dance with me. I can't get angry with him. I can't get frustrated. I can't get fearful. I can't get upset. I have to move into his life and make the best of it.
And we did. We did a lot of dancing from then on, because when he would do something in an anger mood, or he would do something like standing in front of the microwave one morning screaming at it because he thought it was the television set, that wouldn't work, instead of me yelling, I just said, honey, this TV set, you know, it's not working very well today. Let's go over and try this one. And then got the TV on. I had to learn to walk with him in his disease.
And when I did, the anger stopped.
If he got angry with me for some reason, I would simply say, I understand, honey. I'm sorry.
And life smoothed out. Now that anger stage did subside, which was great.
We traveled. I decided let's still travel. Not on long trips like before, but we took road trips.
And through an actual support group, we met another couple.
Ernie got along well with the husband, and the wife and I both had counseling backgrounds, so we decided we'd do some trips together, too.
We had each other to share with, which was really wonderful. Linda understood what I was going through, and I understood what she was going through, so that was great. And then we called them the Boys. The Boys, they got along great, too.
Her husband was a professor from the University of Delaware. And here was Ernie, certainly an engineer from DuPont. So they had a lot in common, and they really got along.
So we made the best of it.
And then finally, when obviously things got much worse, There was a point where I did get Ernie into a facility. My friend Lynn also was able to get her husband in, and they were roommates, so everything worked out. But it all goes back to your own, the caregiver's attitude. You have to learn to go with the flow.
That really helped me. But, no, I had some very challenging times. In the beginning, I would be not telling the truth if I didn't say I was so depressed, angry.
Why me?
The whole victim wrote. Until I ran into that neighbor one day. That made me realize, margo, you're waiting for that storm to pass. Let's enjoy the moment.
[00:10:25] Speaker B: Yeah.
So could you tell me a little bit about after Ernie passed, that experience and kind of refinding your identity?
[00:10:34] Speaker A: Sure. Absolutely. Well, when Ernie passed, he was at the point, and he really did die of Alzheimer's. The man was a very healthy man. He had worked out all his life, loved sports, great golfer, all of that.
But he truly died of Alzheimer's. So he was at the point.
You know, he couldn't swallow. So I'm basically. And he starved to death.
There was this wonderful sense of relief because we knew the time was coming. I had a chance to say goodbye. I was with him every day at the facility. I went back to my teaching part time, but I would always come after school each day and be with him.
There were phases that I went through.
And after he died, the first phase, of course, was the immediate afterwards.
And life is so busy, you know, I mean, closing the final chapter of someone's life is so much more than emotional. It's administrative.
You've got to figure out all the paperwork, close the accounts, the Social Security that there were.
There was a business that Ernie was involved with that I didn't even know about.
So many things to do. So your time is constantly doing something and people are coming by.
You know, you're getting phone calls. Of course, after the celebration of life, casseroles are being delivered. There's so much going on, so you really don't have time to grieve.
It's really phase two, when the busyness subsides.
And that's when you feel the emptiness in the house, the loneliness.
I mean, the ache of love with nowhere to go.
That was such an ache, the loneliness. I missed Ernie so much at that time.
So that was my real grieving time.
I think everyone grieves in different ways and different times. But it was about a year after that the real grieving set in for me and missing him.
I wanted to remain pretty much to myself.
It's funny, Jake. I was reading a journal entry.
Certainly in writing my book, I've been reading. But if I may, for a moment, may I read this to you?
[00:13:03] Speaker B: Of course.
[00:13:04] Speaker A: This was, golly, a few months, quite a few months after Ernie had passed. I said, I'm feeling so empty, and this is uncomfortable for me. I miss Ernie and cry a lot, especially at night. I don't feel as much of a connection to my friends and neighbors these days, and I choose to be alone socially. I feel like a fifth wheel. The counselor tells me to give it time and that I need to grieve.
I hope this ends soon. I know that I have to create my joy on my own and find myself again. But my energy seems too low right now. So that really puts where I was in that kind of phase two that I call it phase three was really the going within part and suddenly saying, okay, what now? What am I?
What am I going to do now?
And who am I?
So that was really where the internal part. And that's where I started to think, golly, I want to get active again.
I wanted to get back into my teaching.
I wanted to get involved with politics again at that time. And I remember a friend asking me, she said, do you want to go to this fundraiser?
And I was just thrilled, you know, to get dressed again like I used to, in business attire, go to a very nice place with a lot of different people.
And I remember beginning to really feel, wow, okay, I'm ready to get back into life again.
And then I got there, all the faces had changed.
I didn't know anyone.
The few people I did know came up and said, margot, where have you been? What have you been doing with your life?
What did I have to say?
Caregiving.
And certainly proudly, a caregiver. But suddenly I had nothing more. And I began to really feel this loss of identity, loss of self. And that was a very challenging time for me, too.
I journaled a lot during that time, and certainly journaling helped me in writing the book because I talk a great deal about that. How can I find myself again?
Well, I started taking part in things again.
I meditated a lot, which was quite helpful.
And I realized, you know, that endings are really not the final steps. They're kind of the beginning of a whole new phase.
It's self renewal. And so slowly but surely, I got active again and found there were areas of interest that maybe I hadn't gotten involved in before. I started a support group. I started counseling and helping others, going through what I went through.
I still had the strengths, the talents, the whatever I had before Ernie got ill and I had to step into the caregiving role.
But I had learned so much as a caregiver, too, so I was even wiser and stronger. I guess phase four and five were really finally. Finally finding myself.
And the last phase and I talk about this is I decided to travel again.
And the first trip I took, I went to a dude ranch. I used to love to horseback ride, but I thought, gee, I'm going to get back to it. So I did.
And being there with other. Just off families and other couples, I was the only one alone.
It was very tough. I spent one evening, the first evening, crying, because here I was in this lovely cabin, all by myself around all these families and couples.
And I just, in a way, just spoke to Ernie in spirit and said, honey, if there's any way you can let me know that you're here, just let me know. Well, the next day, I went on a long ride and came back, and I missed the whole lunch. And there was one couple who had just arrived. And I walked in, and I just didn't know whether I could go in and help myself because they were cleaning everything up.
There was this one couple, and I walked up and said, excuse me, do you know if I can still eat?
And they looked and said, we don't know. We don't know. We just arrived. I said, really? I said, well, welcome. Where'd you come from? They said, wilmington, Delaware.
I said, I'm from Wilmington, Delaware. He looked at me when he. I stuck my hand out and said, hi, I'm Margot Woodacre. He turned around. He was reading the bulletin board. I was talking to his wife. He said, ernie Woodacre's wife?
I said, yes. He said, ernie and I worked together 20 years ago. He said, I can't believe it. I read about his death. He said, my wife and I were traveling. We couldn't come to the celebration of life. He said, margo, consider yourself family. You're with us the rest of the week.
[00:18:25] Speaker B: Aw.
[00:18:28] Speaker A: So there are those wonderful things, but you have to be aware. You have to look for them. But it turned my trip into a wonderful trip. And then I've taken several trips since, and now I don't mind traveling alone.
[00:18:41] Speaker C: Wow.
[00:18:42] Speaker B: That's so wonderful.
[00:18:45] Speaker A: You know, I tell that story, and people just.
I don't believe it. I.
One couple and the timing that I came in and all of that.
Is it coincidence or is it more than that? Who knows? But I was thankful.
[00:19:04] Speaker B: Yeah, I can yeah. Wow.
What advice do you think you would give to somebody who is going through this grieving process, you know, maybe is at the, at the beginning of the grieving process?
[00:19:18] Speaker A: Well, first of all, take your time and grieve.
There's a great expression and the the person, I've never heard of him before. His name is Yahia Labab, bd. I wrote this down, but I think it's a very important quote that I would tell someone just beginning to go through the grieving.
To hurry pain is to leave the classroom still in session. To prolong pain is to remain seated in a vacated classroom and miss the next lesson.
So you need to allow yourself to be in and get the grieving, grieve, cry, whatever, but don't stay in it too long.
I talk in the book about one of the caregivers, a gentleman who just every day we go back to the photo album and look and cry and look and cry. He remained there.
And you do need to move on. You need to allow yourself to grieve.
But don't stay in that empty classroom too long because you're going to miss the lesson. You're going to miss the rest of what can be your life. You're still alive.
And it's hard to tell someone that when they're right in that grieving process because they're so sad.
But that's probably the lesson.
[00:20:52] Speaker C: Hi, I'm Misha Norton and I'm this summer's podcast Intern at the Age of Aging.
Special thanks to Margot Whitaker this episode for sharing her story with us. Whitaker's new book, Crossroads Reclaiming Identity, When Life Changes Everything, is scheduled for release in early fall. We will link more information on that as well as Woodacre's website and blog in the show notes. If this episode or another episode this season has resonated with you, please subscribe, leave us a review or share it with somebody who would appreciate it. This makes a real difference in helping others find the show, and if you have a topic you'd like to hear, email
[email protected] the age of Aging is a Penn Memory center production made possible by the generous support of the Michael Nadoff Communications Hub Fund and Lena Chow.
Our team includes Morgan Adams, Terrence Casey, Dahlia, El Said, Jake Johnson, Jason Karlewish, Emily Largent, Alison Lynn, and myself, Misha Norman.
