Developing a New Lifeline for Alzheimer’s Caregivers
Nancy Rosenbaum, associate producer
The perspectives of people caring for loved ones with Alzheimer’s is “worthy of a show unto itself,” as Krista put it. Indeed, many of the people who wrote to us when we first released “Alzheimer’s, Memory, and Being” articulated the full range of emotions — pain, love, anger, bewilderment — that caregivers can feel. And while this week’s show references the caregiver experience, it’s not at the center of Krista’s conversation with Alan Dienstag.
He’s now in the process of developing a new therapeutic initiative for caregivers called “Ina’s Story,” which is based on the first person account of a former patient, Ina Feidelman. She spent 10 years caring for her late husband Arnie, who suffered from both Alzheimer’s and Parkinson’s.
Here’s an excerpt from that account, titled “Needing Help”:
“People began to tell me that I should get help in the house. My children my brothers and friends were all concerned about me. They were worried that I was ‘killing myself.’
I put Arnie in a day program 2x a week from 1-4 PM. He hated it. He only wanted to be with me. I hired an aide to do some food preparation, to shower him and so on and it was pointless. He would not accept her, and he was angry. He only wanted me. She lasted three weeks. He told me, ‘I know it’s hard honey but I don’t want anyone to take care of me but you…I need you here with me.’
I said, ‘But Arnie, I am being worn down. I can’t do it anymore.’
I was it…
I cried a lot during this time. I used to cry in the shower, it was private time. That was when I let it hit me…
And I was very angry. Why had this happened to us? I actually had the thought that maybe we were too happy, that somehow things were too good and it had to be taken away from us. It sounds crazy now, but that is what I was thinking. I remember discussing it with my brother, he said “Ina, you were dealt a bad hand, that is it, there is no reason.” I believe that is true, but that is not how I felt then.”
Ina’s story is powerful, Dienstag says, because the trajectory she experienced, both practically and emotionally, is so typical of caregivers: “Our hope is that we can use it to help caregivers who are at the beginning of the process that she has already completed.”
He also hopes this new project will motivate caregivers to seek psychological support in greater numbers: “The truth is that many caregivers fear (and sometimes hope) that they will not survive the experience of caring for someone with dementia and, remarkably, many go through this without any help.”
Dienstag and Feidelman are seeking funding for the project while they develop more written materials.
All photos courtesy of Ina Feidelman.
“My Life, My Death, My Choice”
by Andy Dayton, associate web producer
In December 2007, British fantasy writer Sir Terry Pratchett publicly announced that he had been diagnosed with Alzheimer’s disease. Primarily known for his best-selling Discworld series of fantasy novels, he has now become a vocal advocate for the right to “early death.”
The video above is from Pratchett’s speech, “Shaking Hands with Death,” for the BBC’s annual Richard Dimbleby Lecture. Early on in the speech — delivered by actor Tony Robinson due to Pratchett’s condition — he tells the story of his father’s death from pancreatic cancer:
“On the day he was diagnosed my father told me, ‘If you ever see me in a hospital bed, full of tubes and pipes and no good to anybody, tell them to switch me off.’ In fact, it took something under a fortnight in the hospice for him to die as a kind of collateral damage in the war between his cancer and the morphine. And in that time he stopped being him and started becoming a corpse, albeit one that moved ever so slightly from time to time.”
In the clip above, Pratchett addresses what he calls “the God argument” and identifies himself as a humanist who “would rather believe that we were a rising ape, not a falling angel.” He finishes with this thought:
“It’s that much-heralded thing called the quality of life that’s important. How you live your life, what you get out of it, what you put into it, and what you leave behind after it. We should aim for a good and rich life well-lived. And at the end of it, in the comfort of our own home, in the company of those who love us, have a death worth dying for.”
How I Am Preparing to Get Alzheimer’s Disease
by Alanna Shaikh, guest contributor
My father has Alzheimer’s disease. I am losing him in inches and pieces. It hurts. He is my hero and my mentor, and now I help him remember how to put on his clothes every morning.
My father has Alzheimer’s disease. There is a powerful genetic component to the disease, and I share a lot of my father’s risk factors, including bad triglycerides, a viral infection, and elevated cholesterol unaffected by diet. The odds are frighteningly high that I will someday get Alzheimer’s too. In 25 or 30 years, when it comes for me, maybe there will be a cure — but I can’t count on that.
My dad taught me how to learn from everything I see, no matter how hard it was. He was a professor of Human Anatomy and Physiology, and told me once that he was present when his mother died. He held her hand and told her how much he loved her. As she died, he catalogued her body’s shutdown, comparing it to what he’d read — because he was a scientist.
And so, now, I am learning from my father. It’s what he taught me to do. And what he’s teaching me now — his last lesson for me — is what it means to live with Alzheimer’s, and by extension, what I can do to get ready.
First, I am getting new hobbies. My dad is an intellectual. All his hobbies were brain hobbies — reading, chess, poker, bridge. Now he can’t follow them. He recognizes his beloved chess pieces, but he doesn’t remember how to play. Reading is too slow and too hard to be enjoyable, and he can’t play cards at all. He has no way to keep busy. So I’m learning hobbies that use my hands. I spend more time drawing, and I’m learning to knit. I want to teach my hands, so that when my mind can’t do it, my fingers still can.
Second, I’m living my life as fully as possible. Dad got knocked out of his game too soon, but he had achieved enough for a long, long life. The work he loved, and the impact he had on his students — it was more than most people do in their lives. His contribution to our world does not fall short, even if he ran out of time. I am trying to do the same thing — to give as much as I can to the people around me, to work and think and create and contribute as much as I possibly can, in case my time ends early.
The most important thing I’ve learned from my father: love. My father built his life around the people he cared about. Me, my mom, and my brother were the center of his world. For his birthday, he’d tell us to get things for ourselves because he liked seeing us happy — and he actually meant it. But we weren’t the only ones he loved. He loved the students he taught, he loved his friends, and he loved our extended family — both his own and my mother’s.
Now, with so little left of him, my father still has his love. Seeing his wife, his children, and his grandson brings him joy. He can sit just watching my son read a book. Simply living with his family, my dad can find happiness.
The people he cared about through his life still remember my father. We get postcards, letters, the occasional package. And he is still finding new people to care about; he hasn’t lost his love for people. He likes it when we have guests over. He still flirts with all my female friends. He loves his aide and the omelets she makes him every morning.
I have never loved people like my dad did. He had patience and affection for everyone — for people who told boring stories repeatedly, for people I thought were stupid, for people who were afraid of everything, for people totally full of themselves or so shy they could hardly talk. Dad loved people I could barely stand to talk to. He used to ask me to show patience, tolerance, compassion — and I’d promise to try — with no real sincerity.
So now I am trying to learn my biggest lesson from my dad, the lesson I am trying to live every single day. I’m finding people to love; I’m finding things to love in people. I am trying to love people like my dad always did. I am building my capacity for love now, so it can sustain me later.
And if, in the end, like my father, there is nothing left of me but my love, that won’t be a tragedy. It will be my victory.
“Life is But a Memory”
Andy Dayton, associate web producer
“There’s a harvest time for everything in the world. When an orange gets ripe, you either eat it or it rots. When a tree get so big it should be cut and used, because it’s gonna decay or rot back into the soil. And a human life is the same way — you have to learn to manage and take care of everything you have, or you don’t have anything.”
Tom Rose is a 63-year-old farmer, father, and recent widower. This video profile of Rose by Soul of Athens — a project documenting the lives of the people in Athens County, Ohio — is a difficult but powerful tale of grief and loss. His reflections on memory combined with the video’s stark images reminded me of our Alzheimer’s show.
Suffering and Poetry
Larissa Anderson, Poetry Producer
In his essay, “Ecce Homo,” Xavier Le Pichon talks about his mother’s experience with Alzheimer’s. He explains that she was aware of her memory loss long before she was diagnosed. After her death, he says he came upon some of her diaries, which revealed how she tried to hide her memory loss.
Le Pichon relates this discovery to a poem his mother taught him, “Le Vase Brisé” (“The Broken Vase”), written by 19th-century French poet, Sully Prudhomme. In his essay, Le Pichon remembers the poem like this:
“The vase where the verbena is dying
Was cracked by the blow of a fan.
The blow barely grazed it
As no noise revealed it.
But the light bruise
Biting the metal each day
With an invisible but sure hand
Slowly progressed around it.”
The original French version of the poem, published in 1865, was slightly different. I asked poet Robert Archambeau to translate it. He recommended that his colleague at Lake Forest College, Jean-Luc Garneau, read both the French and English versions of the poem, and talked about Sully Prudhomme — his background, his style of writing, and what he may have been trying to say about suffering in his poem.
It’s interesting to connect Garneau’s comments about Sully Prudhomme to Krista’s interview with Xavier Le Pichon. As Garneau says, Prudhomme, along with a few other poets, started the Parnassian School of poetry, a style of writing that rejected sentimentality for scientific precision and detachment. Prudhomme’s poem centers around the idea of fragility — a vase that was cracked by the slightest breeze from a fan. It’s a crack that not only goes unnoticed, but also renders the vase unable to keep its flowers alive. Garneau points out Prudhomme’s scientific distance in the line “the vase is broken: do not touch,” which, he says, suggests suffering should not be interfered with.
When I hear Garneau discuss the poem, I think about Le Pichon describing how he felt he was so immersed in his scientific pursuits that he was not able to see the suffering of others, and that it is through “walking with the suffering person that has come into your life and that you have not rejected, then your heart progressively gets educated by them. You know, they teach you a new way of being.”
Later in his interview with Krista, Le Pichon recalls what it meant for him to see his mother experience Alzheimer’s: “My mother died of Alzheimer’s disease and I could see what the suffering was and that requires from us to invent a new way to deal with this person, with the suffering, to make their life possible, humane. And at each age you have new challenges and you have to face them. And this is how we build the humanity. The humanity is given to us at the possibility of old age, at each birth, and it has to be constructed. It has to be built. It is hard work.”
As Garneau describes what Prudhomme was communicating through the poem, it strikes me as contradictory to Le Pichon’s belief in facing suffering, engaging with it — his idea that fragility is “at the heart of humanity.” I’d be curious to hear more thoughts about how this poem connects with the show and why it surfaces in Le Pichon’s writing.
But, it’s not just “The Broken Vase” that captured Le Pichon’s attention. It is clear from “Ecce Homo” that Le Pichon sees suffering and poetry as intimately linked. He writes:
“As humans are confronted to suffering and death, as mirrors of their own suffering and death, they are confronted to their own fragility and vulnerability and this confrontation forces them to go beyond themselves by entering into a transcendent world that can be metaphysical, artistic and (or) poetic. This has probably been the origin of metaphysics, of art and poetry, which give us the capacity to project ourselves beyond the immediate reality of the difficulties of our life.”
Illustrating Alzheimer’s Disease
Andy Dayton, Associate Web Producer
Not too long ago I was looking through our Flickr account when I came upon a series of beautiful charcoal drawings. They were sent in a few months ago by Laurie Kugner, who responded to our invitation for listeners to write in about Alzheimer’s disease.
The images are of Laurie’s father, and they really deepen the story of his struggle with Alzheimer’s. Looking at this image, I see the loss of her father’s independence:
Rarely a man to watch television, except briefly as he passed through the room while executing various self-assigned maintenance tasks, he was undone when he could no longer perform even the simple fix-it jobs. There was no longer any way for him to feed his spirit, to feed his soul through his intellect that often lived through his hands.
And while the subject is difficult, Laurie’s essay isn’t without an understanding of the growth that came from dealing with her father’s disease. She also writes about the familial bond strengthened by shared pain:
My parents never really had needs of us, or even requests. They very much believed in letting us live our own lives without interference from them. This experience changed that and though it was difficult, it was also beautiful. We were re-forged as a family. Our personalities became more intense, more saturated, and our relationships evolved as we moved through the life cycle of the disease.
Giving Voice to These Acts of Remembering
Trent Gilliss, Online Editor
A few days ago, I was an emotional mess. I was touched
at by the compassion and heart-wrenching stories I was reading. I’m the better for reading them. These are the shared stories about Alzheimer’s experiences from our radio and online audiences. But, then I’m faced with the question: What do we do with this repository of knowledge, with all these magnificent life stories?
Our first step was to create an interface that provides more context — in this case a dynamic map showcasing these acts of remembering. For this “mash-up” we used Google maps, Flickr images, an internally developed application (thanks Dickens!), and our Web site. We gain a greater sense of these authors and their relation to others geographically, including pull quotes and images and age and religious affiliation. And then you can delve deeper by reading each individual essay and viewing larger images.
But the danger is that one can feel lost, even overwhelmed by all these stories, and not no where to begin. We moderate and copy edit most of comments, reflections, and stories online; we like to maintain a safe space where people can feel a sense of trust and share things they wouldn’t in other online forums. The other advantage is that we read everything that comes our way. So, I had to ask myself, “Why not use that curatorial role to highlight particularly moving stories?” So I started tweeting and posting quotes to our Facebook page. For those of you who only read SOF Observed, I thought I’d share them with you:
Madeline Miller: “I hold that advice dear and try to have lots of picnics or just live in a picnic-like way…”
Diana Carson: On a moment between her grandfather — who had Alzheimer’s — and her grandmother: “I don’t know who you are, but … I have loved you for a long time.”
Deborah Jaeger: On working with her father who has Alzheimer’s, “The most difficult aspect of taking care of my father is that we are invisible to others.”
Lea Mathieu: Reflecting on the change in her mother who died of Alzheimer’s, “I do not hope for grace and forgiveness in the future — everyone I meet knows I love them now,”
And from this call-out, we found an unexpected voice in Alan Dienstag, who submitted his own suggestions.
A few years earlier, Krista had interviewed two people for a potential show on Alzheimer’s. The interviews went really well, but we wanted our first foray into this topic to speak to something larger, more personal, more universal — and we needed a voice that could create that space.
Alan Dienstag wasn’t on our radar. We hadn’t heard of him, but Krista asked one of our producers to follow up and ask if he had any recommendations (a scenario similar to our encounter with Patrick Bellegarde-Smith). In talking to him, we realized he was our voice. The result: “Alzheimer’s, Memory, and Being.”
We take great pride in being open to possibilities and sources that aren’t part of our Rolodex, so to speak. And, we hope to discover more stories that give greater meaning to all these topics we cover over the years. In the meanwhile, we’re ready to include more.