Ep 76: Rebecca Chopp, PhD – Spirituality and Alzheimer’s

Spirituality can often be used to provide support to families and caregivers coping with Alzheimer’s disease or other dementias.  Dr. Rebecca Chopp, former Chancellor of the University of Denver and Dean of Yale Divinity School, diagnosed with early-onset Alzheimer’s in 2019,  talks about her spiritual journey with BrainStorm host Meryl Comer. Dr. Chopp shares her personal story of being raised in an agnostic family to becoming a theologian. She explores spirituality and faith while offering insights into acceptance, grief, and maintaining one's sense of self while living with Alzheimer’s disease. Chopp, author of Still Me: Accepting Alzheimer’s Without Losing Yourself, shares how she reshaped her life for a healthy and vibrant approach to finding meaning while living with Alzheimer’s. You don’t want to miss the heartfelt episode!

Produced by Susan Quirk and Amber Roniger

Transcript

Dr. Rebecca Chopp (00:00):

I asked my mother for a book of Bible studies by the time I was five for Christmas, that was the only thing I asked for. She was pretty horrified. But she bought this gray book called Bible Stories for Children. They had all these great pictures, and when I was seven, I went to a church with a neighbor who had figured out I was kind of this spiritual seeker and it was a Baptist church. I saw a girl baptized until I was about 20. I thought she was an angel when she came up from the water.

Introduction (00:35):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver and Emmy Award-winning journalist, and the author of the New York Times bestseller, Slow Dancing With a Stranger.

Meryl Comer (00:51):

This is Brainstorm and I'm Meryl Comer. Joining us today is Rebecca Chop, whose storied academic career was cut short when diagnosed with early onset Alzheimer's while leading the University of Denver as its first female chancellor. Her memoir Still Me: Accepting Alzheimer's Without Losing Yourself is very popular, and she's an outspoken advocate. She serves on the board of UsAgainstAlzheimer's and its Women's Leadership Council, as well as Voices of Alzheimer's. Rebecca, thank you so much for joining us. First of all, how are you doing and how many years are you into a diagnosis that unfortunately upends the life plan of millions of individuals and their families?

Dr. Rebecca Chopp (01:37):

Thank you so much for asking, and thank you for having me on brainstorm. So I started my journey to my diagnosis in 2018 with a routine visit to the physician who caught some signs. I didn't really think anything was up, but by 2019, I was diagnosed with early Alzheimer's, and it did upend my life. I had to retire. I wasn't going to retire until I was 75. I had all sorts of plans. I was chancellor of University of Denver, but I had to do what was needed to be done. And now I'm, I'm doing fairly well. I follow a rigorous diet exercise plan. I've become an activist. I do lots in art and all things considered, I am spending my time in beautiful ways and living well despite the tragedy of this diagnosis.

Meryl Comer (02:43):

Now, Rebecca, we've spoken before, but today we're going to tap into your wisdom and insight. As a former dean and professor of theology at the Yale Divinity School, you shared with me that you were raised in a family of devoted agnostics. Now, how did you find religion?

Dr. Rebecca Chopp (03:01):

Some people, including William James, argue that some people, some of us are just born with an innate awareness of God, and I think I'm one of those. James liked to call it the firstborn. My parents never went to church. They kind of pointed out sometimes how hypocritical church people could be, but it just wasn't a big topic. One of my earliest memories is sitting on my grandfather's chops lap as he drove his tractor by NACA Kansas and him saying, all is Gods. And that was the only theological statement I really ever heard, that he had a deep spiritual sense, and I think my father did too. But they were very suspicious of organized religion because of the oppression they experienced as hussite Christians in the Bohemian Empire. And in fact, that's one of the reasons they had to flee what we now call Czechoslovakia. And even spirituality wasn't talked about much, but it leaked through and every time it leaked through, I just dwelt in it.

Dr. Rebecca Chopp (04:21):

I loved it, and I started looking for words to give this innate sense. I had. I asked my mother for a book of Bible studies by the time I was five for Christmas. That was the only thing I asked for. She was pretty horrified. But she bought this great book called Bible Stories for Children. They had all these great pictures. And when I was seven, I went to a church with a neighbor who had figured out I was kind of this spiritual seeker and it was a Baptist church. I saw a girl baptized until I was about 20. I thought she was an angel when she came up from the water, and I read everything I could. So I think, you know, I had this kind of intuitive, innate sense of spirituality of something more, of something I felt connected to something beyond me and us, but I didn't have words to talk about.

Meryl Comer (05:25):

As a theologian, how do you define spirituality against the backdrop you've described of organized religion?

Dr. Rebecca Chopp (05:33):

I then went on and studied religion in college and became an ordained minister and got a PhD in theology and still write about it. You know, for me, spirituality is a sense and feeling of both being grounded and connected that we can put in words, but we can't finally capture in words. Some people talk about this as transcendence. I like to talk about it as all. I think it's a fundamental way of abiding in this great sense of, you know, for me, I can easily call it God. I can call it the ultimate, I can call it the sublime, some call it the higher power in the Christian tradition. There are theologians that say, God is everywhere, God is all around us. It's finding access to God wherever you are. You know, that's one particular way of talking about it. I'm not so concerned about the words. So I think we have to have words to talk about it as I, in the sense that there is an awareness we can cultivate of something more.

Meryl Comer (06:50):

As you talk about this awareness, why is it important as a life force and not just called upon in a moment of crisis?

Dr. Rebecca Chopp (06:59):

I think it's very hard to call it up in, in a moment of crisis if we don't build it. My metaphor is always exercise for this. If you don't practice it and build that muscle, if you don't explore language to see in new ways, when you get in the moment of crisis, you are not going to have open ears to hear it, open eyes to see it. You're going to immediately go to right and wrong. Cognitive issues. It's like exercise, it's like love. I mean, the more you practice your friendships or your relationships, the more you invest in them, the greater they are. Can you imagine being in the middle of a crisis and calling somebody up that you'd once met 25 years ago? It doesn't work. You've got to cultivate that everyday awareness.

Meryl Comer (07:57):

Rebecca, what would you say to comfort those handed a diagnosis of Alzheimer's? Who asked the question, why did God do this to me?

Dr. Rebecca Chopp (08:07):

First of all, you know, I myself ask that question. I mean, there's just this human kind of response of, you know, all of a sudden you're in the midst of your own self and you're like, well, what happened to me? This outside force? Somebody must have sent this upon me. Now I will say, I have a few friends who are very devout in their faith in a particular way, and they like that cognitive answer, oh, God sent this upon me to teach me a lesson or something. I find that very unsatisfying emotionally, spiritually, and I can't reconcile that with the history of what I know from Christian theology. And I'm fundamentally a Christian, so I'm influenced by Judaism and Buddhism. So I think a more productive way is to take the time to begin to ask the question this way, where am I experiencing God in this?

Dr. Rebecca Chopp (09:07):

Because I think ultimately that question, why did God send it to me? Even if you answer it, you're still going to have to live on, right. So the question is still going to be, where do I experience God? Now, how do I access that feeling of transcendence, of connection? How do I find words to express my fears, my anxiety, my lamentation? Can I explore new dimensions in my relationships? What opens now? And I don't mean that causally, I think so much of it, Meryl is getting to the point where you accept the disease. There was something about those first couple months where at least in my case, I didn't see it coming. And you know, I had these memories of my mother and my grandmother, all of my grandmothers, all of whom died from some form of dementia. But once you get through that initial shock, I hope you can get through it. I hope people and the caregivers can begin to reframe, to ask questions, to talk to people, to read, to find a community where they can begin to explore questions such as, what kind of spirituality can I have on this journey? That's why, you know, I make such a point of talking about the practice and keep practicing it because boy, in that tough moment, it's very hard to call upon it. And it's very sad to watch. It is very sad to watch, and that fear is really hard at the end.

Meryl Comer (10:54):

Rebecca, in your book Still Me, you write about your determination to hold on to the core of who you are for as long as possible and find ways each day to live life well, so that your remaining time, which none of us have control over, quite frankly, can be as rich and meaningful as possible. Now, is that how spirituality has helped and expanded your journey and vision?

Dr. Rebecca Chopp (11:19):

Yes, it has. Definitely. I have come over a lifetime of, you know, reading and contemplating and talking to so many people around the globe to believe that we are born into a world for joy and awareness and community and love, and it is an imperfect world. So that's not happening from day one. And we all struggle and we have all the illnesses we have and the despair and the crises. But fundamentally, I believe that our role is to be aware, to accept, to explore. And I don't mean by joy, happiness, happiness. I mean that deep abiding sense of connectedness.

Meryl Comer (12:13):

Rebecca, many individuals and their families struggle with acceptance of the diagnosis, and often it's accompanied by guilt about how did we miss the symptoms? Or should we have gotten help earlier, even though we know there's no cure.

Dr. Rebecca Chopp (12:28):

I find my life so informed by stories of other people. I was reminded of Viktor Frankl, the wonderful Jewish writer who was in the concentration camps, and I still think his book should be required reading for every human being. I mean, here he is under the most horrible circumstances. And you know, he says basically what happens to me is out of my control. How I respond to it is what I can do. Far be it for me to ever compare anything like the Alzheimer's to the Holocaust. I mean, I just don't believe in that comparison kind of game. But I think the wisdom is that acceptance is the key to control. The one thing you can control is how you respond. You asked about guilt and where western culture loves guilt. I mean, we love guilt and there's all sorts of reasons. We could do a whole podcast on that.

Dr. Rebecca Chopp (13:29):

But guilt basically is triggered by the feeling that you didn't do enough or that you did something wrong. It's an offense, and now we have a disease. There is no control over right now. Maybe controls to slow down the progression of the symptom, but not ultimately. But I think it's so important spiritually to understand that, that the feelings of guilt are almost always a desire to be in control. And I think the deep feeling for most people I've talked with Alzheimer's, once you really, really look guilt in its face, it's covering another feeling. And that is grief and loss.

Meryl Comer (14:14):

Let's stay with the issue of grief and loss, because Alzheimer's is a long journey as you lose a loved one. So it's a different type of grief. It stretches out because you lose a person bit by bit. Where do you find strength and fortitude?

Dr. Rebecca Chopp (14:35):

I really like the term you use, fortitude care partners. The caretakers lose their loved ones bit by bit in dramatic ways. Often those with the disease such as myself, lose ourselves. I mean, the only thing I could think about for months was losing my memories. <laugh>, you know, what was it going to be like to lose a memory of my son or not know his name? I found myself horrified and scared, and I still do this sometimes that I'll call my current husband the name of my first husband or something like that. Loss has its funny face too, I guess. But I think both for the care partner and the one losing their self bit by bit, finally, it is fortitude. It is courage. I, I think we don't talk enough anymore about courage as a fundamental form of spirituality. Courage has many terms, you know, it means heart comes from re the French. I think it's about living with heart. You know, tomorrow may not be better, but we live with heart. We take it on. For me, it's the stories. It's the stories of other people that have been able to do this. You know, some people collect tokens or things to put on their walls. I think I collect stories of fortitude and courage.

Meryl Comer (16:04):

Rebecca, you know what many of us find as family members or caregivers, is other people trying to be helpful and kind, and their conversation shifts to what I call comparative suffering. I don't know how you do it. I couldn't do it. Or Your situation is worse than mine. How do you unpack comparative suffering and should people reframe it? Because quite frankly, it's just not helpful.

Dr. Rebecca Chopp (16:30):

How can you compare my suffering with another person's suffering? The worst thing to me is to say, oh, let me tell you about my grandmother. Or, oh, my grandfather had Alzheimer's. Here was his experience, and you know, I'm sure you're not going to be that bad. Or they say things, I would rather have had anything than Alzheimer's. They would say to me, 'cause I was in higher ed, you are so smart. It's like the most devastating thing in the world, and it's just not helpful. It is not helpful at all, and every grief counselor and therapist will tell you that's absolutely the worst thing. I think a better way to frame it when you're told that somebody has Alzheimer's is to say, I am sorry. I can't imagine what that's like for you. But more than words, it's the presence. It's the touch of the hand. I remember a very good friend when I was diagnosed, came to my house and I told her it was in the early days, and we were both crying and she held my hand and finally she said, I will be with you. And you know, still brings tears to my eyes. I think other than putting the work of reframing on the caregiver and the person, I think that work is on how we respond to somebody who tells us

Meryl Comer (18:03):

There is a devastating moment in the disease when you're forgotten by the loved one that you're caring for, and I'm sure you've even seen it within your own family. Share with us, where do you find comfort?

Dr. Rebecca Chopp (18:18):

I really always advocate, if you get this diagnosis or your loved one gets this diagnosis, get educated, learn all there is to be learned. Read my book. Read the book you wrote about your caretaking experience. Get enough knowledge that you will understand when that point comes, that that's not really your husband or your spouse. That's the brain. You know, decomposing knowledge is power and it's really important to know that. Second, I think it's extremely important for the caretaker to be first and foremost a caretaker of themselves. If you can't take care of yourself, one, you're not going to be present to that person. So it's important to take care of yourself and keep your identity and do what feeds you. And for many people it's so important to take time, to stay well. I think for everybody, it's important to take time away from that caretaking responsibility. I think it's extremely important. You need to access your own spirituality, your own feelings of awe, your own sustenance. You need to carve time for your own lamentation to get out your own grief. You need to be fed so you can go back and feed.

Meryl Comer (19:53):

Our guest has been Rebecca Chopp, but theologian and former dean of the Yale Divinity School who is living with Alzheimer's In part two. We talk about the guilt of no longer being able to care for a loved one at home, the needed conversation with family to respect our wishes, should we get Alzheimer's and the power of advocacy while living with the disease.

Dr. Rebecca Chopp (20:18):

I mean, I think one thing, it's really important to have these conversations early on with your loved ones and with your family. Now of course, some loved ones say, I don't ever want to go into a memory care nursing home. But again, maybe that's a time to bring in a dementia consultant or a spiritual counselor or talk to a pastor and try to get a comfort zone for everyone.

Meryl Comer (20:46):

That's it for this edition, I'm Meryl Comer. Thank you for brainstorming with us.

Speaker 4 (20:53):

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