And slowly, I see why it might be easier to just make phone calls from the safety of one’s home than to be witness to a seemingly unending stream of medical misfortunes. … I realize that their puzzling reaction to illness is not so much selfishness as self-insulation.
—Dr. Ranjana Srivastava, from her essay “The Loneliness of Visiting” in this week’s edition of The New England Journal of Medicine
“Hospital Visit” (photo: Bart Heird/Flickr, cc by-nc-nd 2.0)
A Doctor in the Waiting Room
by Nancy Rosenbaum, producer
When a close friend of Dr. Srivastava suffers a stroke, the medical oncologist from Melbourne confronts the difficulty and helplessness of being a hospital visitor. The experience makes her more empathetic towards her patients’ absent loved ones who visit sparingly.
Developing a New Lifeline for Alzheimer’s Caregivers
Nancy Rosenbaum, associate producer
Ina and Arnie Feidelman, January 2000. Arnie was diagnosed with Alzheimer’s the following month.
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.”
Arnie and Ina Feidelman, August 2006.
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.
Alzheimer’s, Memory, Being
Krista Tippett, Host
This week’s program is another one that draws on my past and tugs fiercely at my heart. I write about my formative, wonderful, heartbreaking experience as a chaplain to Alzheimer’s patients in my online journal this week. When I wrote my book a couple of years ago, I had to recognize the men and women I came to love who had Alzheimer’s as being among my greatest teachers. And I found in Alan Dienstag the wise teacher and conversation partner about this experience that I’d been waiting for, without knowing it, all these years. He wrote to me afterwards that the conversation was very nourishing for him, almost therapeutic, and it felt that way for me too.
Like the best of conversations that delve deeply into particular human experiences and passions, as Trent noted after he heard the interview, it speaks beyond those particulars to the wider human condition. This is a mystery, and part of the reason I keep doing this work.
I’d also like to do a kind of shout out and thanks here to the Masonic Home and Hospital in Wallingford, Connecticut, where I spent several hours each week over 18 months that are now woven into the fabric of a radio program. Recently out of the blue I received an e-mail — through our show inbox — from Ray Cooley, who was the chaplain there and my mentor and supervisor through that experience. It meant so much to me to hear from him and to know that he’s listening!
President Bush at Saddleback Civil Forum on Global Health
Trent Gilliss, Online Editor
On this 20th commemorative World AIDS Day, Rick Warren has convened another forum in which his megachurch honors President George W. Bush and First Lady Laura Bush with the The International Medal of Peace for his work in combating the pandemic of AIDS, particularly in Africa.
The video of the event is playing as I write (I believe a rebroadcast will be available), with the president and his wife exiting the stage — and President-elect Obama speaking via a pre-recorded video. Also, if you’d like more succinct observations, PBS’ Religion & Ethics Newsweekly PJ Hanley is tweeting about it too, if you’d like more succinct observations.
What’s your take?


Dr. Byock sees this as a human opportunity and challenge. Medicine is remarkable, he knows from the inside, and will continue to get more remarkable with the passage of time. But we must “grow the rest of the way up” and acknowledge that we have yet to make one person immortal. Even while we fight for life with all the tools at our disposal, we have to reckon with the reality of death. The good news, as he tells it, is that there are riches to be gained in that reckoning. That edge of life — which our miraculous medicine allows some to perch on longer than ever before — can be a time of unparalleled repair and celebration. Like it or not, as Dr. Byock says, death completes us. These days more than ever before, we can shape that moment of completion together with those we love.

