• Marjorie J. Thompson "Courage for Caregivers" | Episode Transcript

    Karen Pascal: Hello, I’m Karen Pascal. I’m the executive director of the Henri Nouwen Society. Welcome to a new episode of Henri Nouwen, Now and Then. Our goal at the Henri Nouwen Society is to extend the rich, spiritual legacy of Henri to audiences around the world. Each week, we endeavor to bring you an interview with someone who has much to share from their own spiritual life and work, and who has been deeply influenced by the writings of Henri Nouwen. We invite you to share the daily meditations and these podcasts with your friends and family. Through them, we can continue to introduce new audiences to the writings and teachings of Henri Nouwen, and remind each listener that they are a beloved child of God.

    Now, let me take a moment to introduce today’s guest. Marjorie J. Thompson is an ordained Presbyterian minister. She has over 30 years’ experience in retreat work, teaching, and writing on spiritual formation. Author of the best-selling book, Soul Feast: An Invitation to the Christian Spiritual Life, Marjorie considers writing central to her calling. A few years ago, we were so fortunate that Marjorie accepted our invitation to write the first book in our Henri Nouwen caregiving series. Drawing from her decades of experience as a caregiver: first, for aging parents, and then for her own husband, Marjorie wrote Courage for Caregivers: Sustenance for the Journey in Company with Henri J.M. Nouwen. We’re thrilled that InterVarsity Press loved the book and has asked if they can release it.

    Marjorie, it’s one of the most valuable contributions I think you’ve made to extending Henri’s legacy. You found treasures there and you have planted them in Courage for Caregivers. Tell me a little bit about the caregiving journey that you have been on yourself, and how this infuses your book.

    Marjorie Thompson: Yes. Thank you, Karen. Thank you for inviting me to speak with you about this today. You know, I think in many ways, writing the book on caregiving, Courage for Caregivers, was a wonderful opportunity for me to process at a deeper level, my own experience of caregiving. I had come through – goodness – almost two years of giving care to my own mother in our home. The last 20 months of her life, she was with us. And then, actually at the same time, we took in John’s mother, my mother-in-law, whose nickname was Bab. So, I’ll just refer to her as Bab. She actually lived with us the last 11 years of her life. She was just about a hundred years old when she died.

    And then, the sequence was that my own husband, John, who had helped me with this caregiving over all these years, ended up. . . it turned out that he actually had a rare form of cancer even before his mother died. But we had no idea. And he began to get ill, to show symptoms of illness, only three months after her death. And then we were into a period of several months until he died, just nine-and-a-half months after she did. So, it was a very intense experience of caregiving, with multiple, very close family members for me. We were all living together in one household and at the end of that, about 12-year period of time, a household of four had become a household of one. And it all kind of happened so surprisingly, I think, and to me, shockingly at the end. I was in no way prepared for John’s illness or death so soon after his mother. And that was toward the end of 2014 that John died. And I think it was just maybe two years later when you and I had the first conversation about doing a book on caregiving.

    And I have to say that in some ways, I had just finally, really processed – what I would say, adequately processed – my grief over John’s death, in order to move forward with my life. And so, writing this book, which came out in 2017 (I had started work on it in 2016), was really an amazing opportunity for me. First of all, to just steep myself in some of Henri’s wisdom about caring and caregiving. He was just so masterful at expressing deep truths about care that were very helpful to me. And then connecting that with my own journey through caregiving and sort of pulling it together with other stories, in a form that I hoped would really be accessible to many, many caregivers. So, that’s sort the way I look back on this. It was an amazing gift to me, the opportunity to write the book.

    I can tell you really, probably more about my caregiving experience with my mother and with Bab, my mother-in-law. With John, my actual caregiving was relatively short, because he didn’t become ill enough to really need that from me until the last two months of his life. And the last month of his life, he was hospitalized most of that time in ICU, so his care was largely out of my hands. So, that was a much shorter and much more intense kind of experience.

    But, let me just say a few words to orient anyone who may be listening, to the situations in our home with our two mothers. So, my mother came with advanced heart issues and lung issues. She had COPD and it was a chronic lung condition which just got progressively worse. And she was really in the last phases of that. So, her physical needs were enormous. She was tethered to oxygen tubes anytime, in bed and out. And so, it was physically demanding in many ways.

    With Bab, she was actually in pretty good shape when she first came to live with us at age 89. She was still taking vigorous walks outside with her cane, and largely caring for our two cats. She just loved them and made them stay in her apartment. (We couldn’t keep them in the main house because I would get allergic responses.) And she loved to cook, so she would cook meals for the whole family once or twice a week, which was great. It really helped John and me; we were both still working full-time. So, she was in good shape to begin with.

    But Mother died 20 months after coming to us. And within two months – two months! – of Mother’s death, Bab fell and broke her hip. And so, suddenly, just at the time when I think both John and I felt like, you know, light at the end of the tunnel, where we’re going to have a little more breathing space and a little more time to ourselves, all of a sudden, we were just thrust right back into very intense caregiving in our home, with a 90-year-old woman with a broken hip.

    And she made a very good recovery from that in many ways, but her balance was poor, and so she was prone to falls. And she did well enough to get back to her cane for a while. And then she went from the cane to the walker and then, eventually, from the walker to a wheelchair. And so, the last several years of her life, she was mostly in a wheelchair.

    Those were the situations. We did have daytime caregivers come in that we paid, for services in the day, because again, we were both working full-time. And let’s see: For the first seven years, John and I were commuting in and out of town together. So, that was like a 45-minute commute each way. But after that, from 2009 until Bab died in 2013, I was actually working out of a home office, which helped quite a bit. And what that meant was I took on more of the caregiving responsibilities. And with time, Bab really wanted me to take on more and more of it, for her intimate care. She felt more comfortable with me doing that. So, as you can imagine, it became toward the end, all-consuming.

    Karen Pascal: I can imagine. And it’s probably the case for so many caregivers. You can’t see the light at the end of the tunnel, particularly when you’re caring for people who are aging, because you’re not going to get better. You’re just going to get older. That’s really a sad reality in all of this. But it means that, in a way, that that little glimpse that you had, that maybe you and John would get some time, it got consumed very quickly.

    Marjorie Thompson: Yes.

    Karen Pascal: I think it’s so valuable for people, as they’re listening, to know this is someone who’s been in the trenches, who understands all the responsibilities that come with caregiving, the inescapable responsibilities that come with it. And I think the book goes there in a very special way, not just in your life, but in the stories you chose to weave into it. Stories of parents dealing with fragile children, or just difficult, difficult situations that are really the hub of what it is to be a caregiver.

    Marjorie Thompson: Yes. And, you know, there are so many people today, more and more, as we have an aging population. And of course, better medical care means people are living longer. But this often means that people in their sixties and seventies are caring for aging parents in their eighties and nineties, or even beyond, and their own energy levels are definitely not what they once were. And in many cases, you have perhaps parents of kids – parents in their forties and fifties who are still caring for children; some of them may in fact have special needs – and then also their parents; trying to figure out how to balance all of that. We’re really living in a time when these challenges are getting more and more demanding and draining for people.

    I think there’s so many different kinds of caregiving and different sorts of needs. John and I became aware, after a couple of years of Bab living with us, that she actually had some cognitive limitations and some behavioral patterns that were . . . I’m sure if she had been a kid any time in the last 20 years or more, she would’ve been diagnosed with ADD and probably somewhere on the mild side of the autism spectrum. That was our guess: that she had suffered from those things probably all her life, but never diagnosed, because in her day, those diagnoses weren’t around. But she showed a number of cognitive limitations that we also had to sort of cope with as we dealt with her. And obviously, you know, as a person is aging and the brain is beginning to change, just physiologically, any cognitive issues that are there are going to deteriorate.

    So, we got a little taste of that. Not as much as many people, though; we were fortunate. I know that my image of her memory was sort of Swiss cheese, and so, in the last few years of her life, lots of things sort of slipped through, and she wouldn’t remember what she had said or a story she had told just the day before. But we didn’t really experience some of the very painful things that happen when they’re caregiving for someone with Alzheimer’s or dementia, where real, profound personality changes come into play. We were very lucky in that there was a little bit of paranoia toward the end, but not a lot. And I think for many people, that’s just one of the most difficult things to cope with, when someone you’ve known and loved all your life, their personality changes. And it’s just so hard to know how to relate to them. So, it’s not just a matter of the physical care, but shifts in the emotional relationship and your sense of identity in relation to that person. And that person’s identity may seem to just be crumbling.

    So, there’s so many pieces to this. And then in this book, actually – and I might just mention, since I’m assuming most people listening will not know about this book or have read it – but I interviewed eight people to get some different kinds of stories from my own caregiving stories. And four of them are particularly featured in one of the appendices at the end. But the stories, all of them, are sort of scattered through the book.

    And a couple of them are just exactly these situations you have named; with medically fragile children whose situations are irreversible. They will not change. Parents know that they will be caring for these children as long as either they or the child live. And it is so exhausting. It’s exhausting, physically and emotionally. I have to say that the interviews that I conducted for this gave me such profound empathy for, and amazed gratitude for the resilience and the remarkable human spirit that, by the grace of God, parents figure out how to do this and keep going. I don’t think I could have done the kind of caregiving that some of these parents have done with high-needs children.

    So, there are some very moving stories in the book. And my hope is that the book offers some perspectives and practices and, literally, encouragement, courage to keep going. That’s why the book is titled the way it is: Courage for Caregivers. You know, I think we need that so much when we are in the trenches, as you put it.

    Karen Pascal: It’s interesting, because I think one of the very special aspects of the book is really that desire that people feel seen: “Somebody gets what I’m going through. Somebody gets it.” And there is a kind of refreshment in it, as well. I love Philip Yancey describes Henri Nouwen as “the patron saint of caregivers.” I thought that was very sweet. What, exactly, would you say Henri had to offer in it that in a way is sustenance for the journey? What did you find there?

    Marjorie Thompson: Oh, you know, Henri just has so much to say on care. I think Yancey is absolutely on target, that Henri was the patron saint of caregivers. I probably drew from 15 of Henri’s 40 books. And more could have been used. He just brought care into everything he did, you know, from all the volumes of letters he wrote – such attentiveness to just hundreds and hundreds of people in his letters! I think of his pastoral care at the L’Arche Daybreak community with the whole community, all of them, the core members and the volunteers, everybody there. His own caregiving, physically, for Adam at Daybreak. He was just steeped in a profound understanding of the nature of care.

    And I guess, you know, let me try to identify just a few aspects of what I would call Henri’s unique wisdom for caregiving. And the first of those is the idea that care is not to be confused with cure. He talks about this really early on. He had this understanding, very early on, that we can always, always care, even if we cannot cure. And he could see so clearly that sometimes the medical establishment is so geared to cure that it doesn’t do so well at the caring side. And so, people can sometimes feel really depersonalized or devalued when they’re sort of caught up in the medical system and they’re going from one specialist to another and one test to another. And it can feel very clinical and sometimes sort of antiseptic. But I think doctors, probably more physicians than nurses on the whole, tend to learn to create a kind of professional distance from the patient. But that doesn’t always result in the best quality of care.

    And so, Henri really makes this lovely distinction that I think is so important: really caring for another person so that they feel seen and heard and loved and cared for – that is always healing. That’s always healing, emotionally and spiritually, even if it’s not healing physically. And so, Henri was always attuned to the spiritual side of things. And so, that’s just a really important distinction that is brought into the book early on.

    I think another one that I really try to sort of keep unfolding for people in different ways is Henri’s strong understanding that mutuality really lies at the heart of all care relationships. They’re always mutual; it’s never a one-way street. And this is really kind of eye-opening for a lot of us, because, you know, if we’re caring for a person who seems really profoundly incapacitated physically, or mentally, or whatever way it may be, it can be really hard to sense where that mutuality is. It’s not going to come to us all the time in an ordinary way that we can easily perceive, the way it might in a lot of other relationships.

    But Henri was so clear that there’s always an expression of mutuality. And I think it was his experience of caring for Adam at L’Arche Daybreak that really taught him this. I mean, Adam could not speak or move on his own, but what Henri learned was that, nonetheless, Adam exuded a kind of spiritual presence that was actually healing for Henri, and for many others who knew Adam. It wasn’t just Henri; others felt this in Adam’s presence. And you know, if that can happen, if people in the presence of someone as incapacitated as Adam can experience a mutuality in the relationship, then it can happen with anybody. And I think we need to learn how to trust that the person we care for has gifts to offer us, and just keep our eyes open for those gifts. Those gifts that the care receiver has for us as caregivers may be the very reason God has called us into the circumstances of care that we find ourselves in. It may be the task of caregiving is for the sake of our learning and growth in God’s eyes. And I think that was true in my relationship with Bab. So, I’m speaking here from some learning of my own.

    And one final thing I would name as one of Henri’s unique wisdom perspective: that our death can be as much a gift as our life. This was something that emerged for him later in his own years, that he began to see that our death can be fruitful. He was asking the question, “How do we make our death fruitful?”

    I think this really started for him after his experience of being struck by the van. And it was a near-death experience for him. And he really did a lot of thinking about death and dying and what lies beyond, because he had a glimpse of that. And his questions about how we make our death fruitful, I think, really grew out of that experience and the fact that he was still in this world.

    So, as we face into our dying – and all of us will die at some point – it’s important for us to accept that and kind of look at it. The old spiritual counsel, to keep your death always before your eyes, is not a morbid counsel; it’s realistic. We never know when our time will come. But as we face into our dying – and generally this happens more when we get, maybe, terminally ill or we’re toward the end of our life age-wise – we can become so much more conscious of what we want to leave behind, in values, in love. What will our legacy be? What legacy do we choose to leave? And that’s just, I think, a really, really helpful and fruitful question for us to think about. And then there are some elements of that in this book, too, I think, but those were the three things that I thought of: the care, not cure; the mutuality of relationships; and that our death can be fruitful. Those were very distinctive, unique aspects of Henri’s wisdom, I think.

    Karen Pascal: I know you created a workbook to accompany Courage for Caregivers. Can you tell me a little bit about the purpose of the workbook?

    Marjorie Thompson: When the book was first written, we were involved in a partnership with Church Health in Memphis – wonderful, wonderful ministry organization that had under its umbrella the whole parish nursing association. And the audience for the book, as far as Church Health was concerned, as they partnered with us, were these parish nurses, because they did all kinds of programming in their churches and in other, non-profit settings. And so, I developed a one-day retreat for caregivers that was based on the content of the book. That retreat is appendix A of the book.

    But I developed a workbook as a retreat participant workbook for that retreat. So, the workbook is tied in with the one-day retreat, and it gives people a chance to really delve into some of the content of the book, the themes, some wonderful quotes of Henri’s to reflect on, and then to connect it with their own experience as a caregiver, and to do some journaling on that, and conversations with other people, other caregivers at the retreat around common experiences or different experiences, so that we learn from one another. So, that’s what the workbook was for. It was really designed in relation to the retreat. I think that InterVarsity is planning to put that workbook in a downloadable PDF, so that anybody who purchases the book and wants to lead a retreat with the model in appendix A can download the workbook for participants.

    Karen Pascal: I think that’s fantastic. We should also mention that there is a second book in the series that’s coming out. And in fact, I’m going to do a podcast with Susan Martins Miller, who wrote a 42-day devotional for caregivers. It’s called Hope for Caregivers in Company with Henri J.M. Nouwen. And Susan has also much to share in this book. It is a daily devotional with a passage from Henri, a scripture, and then a reflection that she brings to it. But she, like you, comes from a life of having been a caregiver, and I would encourage people to listen to that. And both books are coming out with InterVarsity, and we think they’re quite wonderful.

    Now, having talked about this, I feel like I need to go back a little bit. I think a lot of the people that are listening today may know you in another way. Perhaps they’ve been part of this free, five-part series that we have launched this summer, called From Fear to Love: Spiritual Grounding in Anxious Times. Marjorie, you have been leading this, and it is a treasured experience. I say to people listening: It’s free, it’s on YouTube. You can get the links to it on our website. But I would like to hear just a little bit from you about what your hopes were for this. I mean, the title is so perfect for the times we live in, you know, Spiritual Grounding in Anxious Times. Tell me just a little bit about what your hopes were for this particular series.

    Marjorie Thompson: Thank you. I’d be delighted to say a little bit about this, because it’s just gotten started. The first of the five, I guess, came online this past Saturday. So, I think I want to use a word that’s probably been way overused in the last six or seven years, but I can’t think of a more accurate word. And that is unprecedented. I think we are living in unprecedented times at several levels, right now. So, let’s just say with respect to recorded human history, our climate crisis and ecological collapse is unprecedented. In a much, much shorter timeframe with respect to the history of American democracy, serious flirting with autocratic rule by an entire political party is unprecedented. Globally, the rapid rise of electronic information and disinformation, the reshaping of whole societies by social media – that’s unprecedented.

    I mean, we’re just in different times and we’re living through some very profound challenges, nationally and internationally. I think people are frightened, anxious, disheartened, and it’s so easy to lose hope. It’s so easy to become despairing and even desperate in times like these. And I’ve succumbed to these feelings at times, myself. I’m not immune to losing heart. So, my purpose in these meditations is to share some perspectives of faith that have really helped lift me from cynicism and despair, and that I really hope and trust will be helpful to others who are struggling. And in each of these meditations, I also share a few simple spiritual practices that I think can help us stay grounded in our faith when times are just very rough and we feel overwhelmed. I mean, we’ve just been through two years of a global pandemic – something that hasn’t happened probably since a hundred years ago, and most of us weren’t alive when that happened, either. So, just so much going on and it all layers on, on one layer on top of another.

    I guess I really hope that listeners to these webcasts will find their minds opened to a more spacious realm, where God’s love and grace become deeply real to them and where hope can be found, and trust can be fed and nourished. I would love to imagine that people might come away from engaging these meditations with just a bit more peace and joy in their hearts, and a more hopeful outlook that they can carry. I think every one of us is called to carry light in the darkness. Every one of us is called to live in hope and to be a source of hope for others in a time when it’s very easy to lose hope. And the only way we really can do that is to stay grounded, spiritually, ourselves. So, that’s what this is all about. Spiritual grounding in anxious times: How do we move from fear to love? And so, each of the five is a different way of doing that, and we explore different themes.

    Karen Pascal: Well, we are so excited, as the Henri Nouwen Society, to be able to offer this. We made that decision because we found last year, when we did our conference and we got the feedback from people, that Marjorie, your voice had spoken so deeply through the meditations, through what you shared, that people really responded to that. So, in essence, I said, “Marjorie, what could you give?” And you have given something that is of such worth and is so timely. It’s been interesting for us to see, first of all, I want you to know, as a listener, these are free and they’re available. And they will be on our YouTube site. You can access them through our website.

    And the wonderful thing is initially, at the beginning, 7,000 people have signed up from 81 different countries. That’s kind of floored us. We’re thrilled with that response. We know that people are hungry for that movement from fear to love. And I truly believe you, Marjorie, are one of the gifted people who is able to identify the times we’re living in, speak with kindness and gentleness and encouragement into it, and bring a voice of faith into it, ground us. I’m very, very grateful.

    I thank you for being with us today, Marjorie. Thanks so much. Thanks for writing the book, Courage for Caregivers. Thanks for writing the wonderful workbook, but also thank you so much for the series that you are doing right now. And I do encourage our listeners: Don’t miss it. It’s really worthwhile.

    Marjorie Thompson: Well, thank you, Karen. Thank you so much. I appreciate your words and it really just has been and remains for me, such a deep honor to work with the Henri Nouwen Society to help lift up Henri’s wisdom, to bring whatever wisdom I can offer to our situation now. I’m grateful for that opportunity. So, thank you.

    Karen Pascal: Thank you. Thank you so much. Your book, Courage for Caregivers: Sustenance for the Journey in the Company of Henri J.M. Nouwen, is a valuable resource, full of wisdom for caregivers and understanding for both the challenges and the joys they face on a daily basis. We’re delighted that InterVarsity Press has released this book and is giving it such a broad audience – a much broader audience than we could do.

    If you enjoyed today’s podcast, we would be so grateful if you’d take time to give it a stellar review or a thumbs-up, or even share it with your friends and family. As well, you’ll find links in the show notes on our website to any content and resources or books discussed in this episode. There is even a link to books to get you started, in case you’re new to the writings of Henri Nouwen.

    Thanks for listening. Until next time.

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