Ep 77: Rebecca Chopp, PhD - Maintaining Dignity While Living with Alzheimer’s

In part 2 of BrainStorm, host Meryl Comer and Dr. Rebecca Chopp, former Chancellor of the University of Denver and Dean of Yale Divinity School, delve into maintaining dignity while living with Alzheimer's and dealing with guilt when transitioning loved ones to memory care. Dr. Chopp shares how spirituality and religious practices can help those with dementia, including the role of music and ritual in connecting with memories. The episode also stresses the importance of early conversations about care preferences and advocacy as a way for caregivers to maintain their identity while fighting the disease. Dr. Chopp, author of Still Me: Accepting Alzheimer’s Without Losing Yourself, offers spiritual insights into interacting with loved ones who have Alzheimer's. You don’t want to miss this poignant and informative episode!

Produced by Susan Quirk and Amber Roniger

Transcript

Rebecca Chopp, PhD (00:01):

I want to focus on this word dignity, because I think the Alzheimer's diagnosis, the threat of that is a threat of the loss of dignity. And I think it does occur, but that's why it's important to do all one can physically and mentally, emotionally and spiritually to build this capacity to try to keep that dignity. And I think it's part of us who are in this world of educating about Alzheimer's. Part of what we educate is always, always, always treat the person with Alzheimer's, with dignity and respect.

Introduction  (00:39):

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 (00:56):

This is BrainStorm. And I'm Meryl Comer. Our guest is Rebecca Chopp Theologian and former Dean of the Yale Divinity School and former Chancellor of the University of Denver, who is diagnosed and has been living with Alzheimer's for the past five years. In part two of our conversation, I asked her about the guilt felt by families who can no longer care for a loved one at home, and the reaction of those around them.

Rebecca Chopp, PhD (01:25):

Do you think that judgment is primarily self-judgment or conflict within families or both?

Meryl Comer (01:32):

Both, wouldn't you say?

Rebecca Chopp, PhD (01:33):

Yeah, I think so. 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 or nursing home. But again, maybe that's a time to bring in a dementia consultant or a spiritual counselor, talk to a pastor and try to get a comfort zone for everyone. So if nobody takes anything else from this conversation, I hope they will take that. Don't leave these spiritual questions that are also physical 'cause we're both spiritual and physical beings until the last moment. Start talking early. And I think guilt is often associated with the feeling that we ought to be able to do it all, that we ought to be able to manage everything. It comes a lot with perfectionism, <laugh>, be it perfectionism of the woman who's stayed home all of her life, or the woman who's worked out in the world all of her life. I think the drive of perfectionism. So I think we have to dwell in that and examine what is that guilt about when it may be painfully obvious.

Meryl Comer (02:55):

And may it also be grief disguised as guilt.

Rebecca Chopp, PhD (02:59):

Correct. And loss. Grief and loss. I think sometimes with people who've done long-term caretaking, it's become their identity and it's also become the last fragment they feel of their relationship, of their love. And yet, you know, many people tell me that once they put their spouse in memory care, they're free to shift back to the spouse role and not the care partner role. Have you taken your medicines? Oh, it's time for a bath. Oh, we need to clean you up. So I think it's, it's really important to stay with these feelings. I would also just say on a final note, you know, for those of us living with this disease, and I think, you know, there's so much more education than we had even six years ago, and it's so important. I all have to be willing to face the fact that with this diagnosis may come something like memory care or assisted living where our, where our partners can't take care of us. And I think it's very important to free them. Early on, I have said to my husband and my son who are my caregivers and partners, and I'm sorry if I'm a little bit less sophisticated than normal, but here's how I've said it. I don't want you wiping my rear end at that point. I want you to put me in assisted living or memory care. And that's both true. I really don't like the idea, but also I want to free them.

Meryl Comer (04:38):

My experience having lived through the disease, caring for my husband and my mother for 24 years, is that you don't want to be a burden. Right? I don't want my son doing for me. What I did with love for my husband and mother, although my son loves me, would do it. I just don't want to be remembered that way.

Rebecca Chopp, PhD (04:59):

And you don't want your loved ones to have to experience it because though they're willing to do it, and mine would be too, it's my gift of love. I don't want to, and I want to focus on this word dignity, because I think the Alzheimer's diagnosis, the threat of that is a threat of the loss of dignity. And I think it does occur, but that's why it's important to do all one can physically, mentally, emotionally, and spiritually to build this capacity, to try to keep that dignity. And I think it's part of us who are in this world of educating about Alzheimer's. Part of what we educate is always, always, always treat the person with Alzheimer's, with dignity and respect.

Meryl Comer (05:50):

I'd love to go back to your point about caregivers and their need to find something to keep their identity. I will share that advocacy saved my life because I knew that no matter what I did for my husband and my mother every day, and with great care and love at home, the disease was going to win. And it was powering for me to become an advocate because I could fight it at a different level. Yeah. Even though I knew the disease would ultimately went up.

Rebecca Chopp, PhD (06:21):

I love that. It's also kind of this we've been talking about control. It's also kind of like a healthy way <laugh> to have some control. It's so important. Every time I give a speech, I anoint everyone since, you know, I like religious language to be Alzheimer's advocates and activists because I do think that is a way we've all got to fight against this disease and we may not win. I'm not going to win on my journey. I don't think. You may not win on your spouse's journey or your aunt's journey or your friend's journey, but overall you can join that battle. And I do think that's empowering. And I do think that's another way of finding courage. I mean, every time I am working with us against Alzheimer's or voices of Alzheimer's or another group, there is something so empowering about coming together and doing what we can to fight this disease so that maybe down the line people won't have to experience all this despair and death.

Meryl Comer (07:39):

Rebecca, how do you connect a loved one who has been religious and bring them to a place that triggers memories of their lifetime and spirituality that touches them deeply? Can we reach them in that process?

Rebecca Chopp, PhD (07:54):

That's such a beautiful question. First of all, there is a movement in Christianity. I don't know about Judaism and Buddhism, but I imagine it's there called the Purple Church Movement. And it's a movement to create dementia friendly worship services. So these might be every week, they might be once a month. It's to educate people who maybe don't have the disease to participate. Music is so powerful for most people who have dementia, for people who remember singing hymns as children or young adults, that can be so powerful. The rituals can be so powerful. First of all, I think cultivating the purple church movement is extremely important. And you can Google it and there's websites you can go to. I think also if I were to talk about my own experience with others, it's probably important that people in the church, some of the people know that this person has Alzheimer's.

Rebecca Chopp, PhD (09:05):

And we haven't talked enough about the importance of community for support and spirituality. But certainly the rabbi or the priest or the pastor or the teacher might be aware because there are ways one can set the tone. And at least some community members when you ask that question. I remember attending a, a church that was a high liturgy church. It was an Episcopalian church if, if you know what that means. And, and they had incense and they burnt candles and you know, they lifted up the scripture in the middle of the community when they read it. And it was very high church. And this woman had fairly advanced Alzheimer's. She was still physically mobile, but you know, she couldn't really sit and chat with you. But I remember her face just lifting, you know, kind of lifting when she would hear that. And I've heard dementia consultants and other experts say that people with Alzheimer's and their care partners ought to form a playlist.

Rebecca Chopp, PhD (10:12):

You know, my own personal story is, as a young pastor, I remember here I was in rural Kansas going to what was nursing homes. That's all we had. And many of the people I went to see, or or just there couldn't speak. But one day I took a friend who played the piano and I decided we'd just sing hymns. And so many people, we were like in the, you know, little living room area came alive and they sang those hymns. I will never forget that experience. And now of course we have research to articulate why that is.

Meryl Comer (10:51):

Rebecca, the reality of caring for a loved one with Alzheimer's often requires that you have to forgo the reality around that. How does the spiritual person rationalize what some might call lying when it's trying to be creative and manage a difficult situation? Or is it all right just to live with them in their space?

Rebecca Chopp, PhD (11:12):

I go back to the importance of education. When you get this diagnosis or your partner, or you decide you're going to be a care partner to someone, get educated, understand that any kind of like, oh no, that's not what happened in 1958 is going to backfire. You're not living in that dimension. There's a lot of dimensions in which you can live in spirituality. You know, sometimes I think about living with someone with dementia as a kind of improv theater. You know, you go with the flow and their spirit at that moment may not be the realistic, the exact linear world. I also think, you know, all the spiritual experiences that we study, the mystics across the religious traditions on the shamans and others, there are all sorts of dimensions we can engage in. And I think that's important to do at this time. Go with that flow or just play. I often speak to groups of young people for some reason, I, I get asked to speak to young people, but you know, my grandmother or aunt or sometimes my parents have been diagnosed with a dimension and what I do, and I always, you know, end up saying, be present and play, play music. They like play dolls that they want to play. Adults can't get that loose often, but children can. I think sometimes children can be the best people to walk with dementia, but maybe that's what a care partner needs to do,

Meryl Comer (12:54):

Rebecca. So that's where you bundle the joy and your philosophy of joy and spirituality. Mm-Hmm <affirmative>. Do I have that right? Yeah. Rebecca, this has been a wonderful conversation. We could keep it going and going.

Rebecca Chopp, PhD (13:08):

We could.

Meryl Comer (13:09):

It is always such an honor and pleasure to have you with us. We hope our conversation has been helpful for our listeners and members of our Alzheimer's community on so many levels. And thank you for your generosity. I know time is precious for all of us. That's it for this edition. I'm Meryl Comre. Thank you for brainstorming with us.

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Speaker 4 (14:06):

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