Dr. Arthur Kleinman, a professor of psychiatry and anthropology at Harvard University, calls this “enduring the unendurable” in his recently published book, “The Soul of Care: The Moral Education of a Husband and a Doctor.”

The book describes Kleinman’s awakening to the realities of caregiving when his beloved wife, Joan, was diagnosed with a rare form of early Alzheimer’s disease that causes blindness as well as cognitive deterioration.

Although Kleinman’s specialty is studying how patients experience illness, he wasn’t prepared for the roller coaster of family caregiving. Each time he adapted to Joan’s changing condition, another setback would occur, setting off new crises and fueling uncertainty and stress.

During 11 years of caregiving until Joan’s death in 2011, Kleinman learned that no one who goes through this emerges unchanged. He became less self-centered, more compassionate and more aware of how the health care system fails to support family caregivers ― the backbone of the nation’s long-term care system.

I spoke with Kleinman in mid-November at a caregiving panel. His remarks below are edited for length and clarity.

About his book. “I wrote it for a specific reason. I had spent my whole career as an expert on care. I myself was a psychiatrist who worked with patients with chronic medical disorders, [such as] chronic pain, diabetes, heart disease, cancer. I thought I knew it all. A veil of ignorance was raised from my eyes by my experience as a primary family caregiver.

“What is that veil of ignorance about? It’s about recognizing just how difficult family care is for [people with] dementia and, not just dementia, but many other problems.”

Daily responsibilities. “Let’s say in the fifth year, what was it like? I would get Joan up around 6 a.m. and take her to the bathroom. I have to handle the toilet paper, wash her hands, dress her to work out, take her to the bath and bathe her.

“I would shampoo her hair, dry her, pick out her clothes [for the day]. After that, I would prepare breakfast. As she got increasingly agitated, [that] became difficult because I had to sometimes hold her hands [to] keep her from throwing things or getting up and hurting herself. Because she was blind, she couldn’t see where she was. And then I would help her eat ― usually, at the end, feeding her ― and then take her to a room where we would sit and listen quietly to music.

“Maybe six, seven years into this, I would just sit there and hold her hands. And even that became difficult. So, I would tell her stories of the past … our stories. [Editorial note: This is just the beginning of a day full of similar tasks.]

“I discovered early on that the ritualization of acts of caring ― the dressing, bathing, all these things ― is a way of habit formation that keeps you going.”

Challenging masculinity. “We had a great relationship, but it was asymmetrical. For 36 years, my wife took care of me. I was raised as a classical male in the 1940s. When I showed an interest in cooking, my grandmother said to me, ‘What are you, a sissy?’ I was a tough kid on New York [City] streets. I had the most unpromising beginnings to be a caregiver. And my wife slowly socialized me to a different kind of masculinity, to be able to care.

“[Pay family members for caregiving] and you’ll see more men do it. Go to Australia, for example, where there’s very good compensation for care, and you’re astonished at the number of men who are caring for children, who are caring for elderly, and the like.”

Asking for help. “I have a wide circle of friends and colleagues, and [after the book] many of them said they had never realized what was involved. Part of that was my fault. I had a lot of trouble asking for help. Actually, at one point, I so exhausted myself that my kids, who are great, said, ‘You really need assistance.’ And they stepped in, as did my mother. My mother, who at the time was in her 90s.

“So, I had a great system of care around me, but I [also] needed a home health aide to [help with Joan and] keep myself going. I found an Irish woman … and she was fabulous.”

Maintaining presence. “In spite of that, I found it extraordinarily difficult in terms of other elements of care, one of which is presence. To keep your liveliness, your love, the presence of who you are going while you’re doing all this work of caregiving ― it is extremely difficult and demanding, but it’s crucial.

“When people ask ‘Why do you do [this]?’ the answer of most family caregivers I’ve spoken to is ‘Well, it was there to do. It’s got to be done, [so] you do it.’”

Learning about failure. “I was fortunate in life; I had a golden career. I have a personality that is like a bulldog, and when I start something I finish it. But there’s no finishing care. Every one of us [family caregivers], if we’re honest, you fail at a certain point. The frustrations build, anger mounts, you control your anger so you don’t injure the person you’re caring for. But you’ve got to somehow handle it inside you.”

The soul of care. “I think what lies at the soul of care is a form of love. You will do everything you can for another because they mean so much to you. [But] it is also problematic, because we all have complex relationships and we’ve got other things going on in our lives.

“We endure, we learn how to endure, how to keep going. We’re marked, we’re injured, we’re wounded. We’re changed … [in] my case, for the better. If you had known me before my 11 years of care, you wouldn’t recognize me today. I was your classical hard-driving Harvard professor … as tough as any other professor at Harvard Medical School.

“I’ve redeemed myself through this experience, in a way.”

A call for change. “How do we strengthen caregiving? How do we do those things that will make it recognized as important as it is? It’s going to take a radical rethinking. Our health care system [is focused on] entirely the wrong issues. Economics is not the most central aspect of care; it’s caregiving.

“Do you know not a single one of the senior neurologists I went to with Joan who wanted to do everything diagnostically made the recommendation ‘You want to think about a home health aide now, even though you don’t need it right now. You have to look into how you’re going to reconfigure your house [for] someone who’s both blind and with dementia. [Or] a social worker is a great navigator of what the health care system is about. You want to take advantage of that.’

“So, this is where I believe that our whole health care system has got to be rethought, from the bottom up with attention to care at its core.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.

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Family caregivers are the backbone of our nation’s system of long-term care for older adults. Every year, more than 34 million unpaid caregivers — mostly family members — provide essential aid to adults age 50 and older, helping with tasks such as bathing or dressing and, increasingly, performing complex medical tasks such as managing medications, dressing wounds and operating medical equipment.

What emotional and practical challenges do family caregivers face as they undertake these responsibilities? How do they cope with changing relationships, financial burdens and the distress that serious illness often provokes? How do they balance their own needs with the needs of the person they’re caring for? Where do they find support?

In the first half-hour, KHN “Navigating Aging” columnist Judith Graham speaks one-on-one with Dr. Arthur Kleinman, a distinguished professor of psychiatry and anthropology at Harvard University. He is the author of “The Soul of Care: The Moral Education of a Husband and Doctor,” a new book about caring for his wife from the time she was diagnosed with early-stage Alzheimer’s disease.

Graham then leads a discussion among four panelists, all caregivers themselves:

• Rita Choula, director of caregiving projects at AARP’s Public Policy Institute
• Sheldon Friedman, a board member at the Well Spouse Association
• Barry Jacobs, a psychologist and principal at Health Management Associates (Philadelphia)
• Kimberly Street, a faculty clinical instructor at the University of Maryland, Baltimore

This event was sponsored in part by , which supports KHN’s coverage related to aging and improving the care of older adults.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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For a generation of LGBTQ+ people who lived through unprecedented social change, getting older poses new challenges. When it comes to seeking elder care, concerns about lack of services, discrimination, neglect and even abuse threaten to reverse recent progress.

What are the hurdles to quality care that face growing numbers of aging LGBTQ+ people? By 2030, an estimated 7 million LGBTQ+ people in the U.S. will be older than 50, and as many as 4.7 million will be seeking care and services.

Our conversation was aimed at people who may be part of the LGBTQ+ community ― as well as their loved ones and their caregivers. We talked about what quality care for elder LGBTQ+ individuals looks like, what types of overt and covert discrimination they may face and the documented concerns of the community revealed in recent research. We also heard how two longtime hospice experts are facing end-of-life issues in a personal way.

The panel, moderated by JoNel Aleccia, a KHN senior correspondent, included:

• Kimberly D Acquaviva, Ph.D., MSW, CSE, professor at the George Washington University School of Nursing in Washington, D.C., and author of the 2017 book “LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice.” On Aug. 1, she will be joining the University of Virginia School of Nursing in an endowed professorship. She is the wife and caregiver of Kathy Brandt, who is dying of ovarian cancer.
• Kathy Brandt, MS, founder of the KB Group, a palliative care consulting firm in Washington, D.C. She wrote and edited the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th edition, and is a former leader at the National Hospice and Palliative Care Organization, NHPCO. She is the wife of Dr. Acquaviva and was diagnosed this year with terminal ovarian cancer.
• Aaron Tax, JD, director of advocacy for SAGE: Services and Advocacy for LGBT Elders. He advocates for LGBTQ+ inclusive federal aging policies that account for the unique needs of LGBTQ+ older adults.
• Sean Squires, MSN, RN, team director for Seasons Hospice & Palliative Care of Maryland, one of more than 300 providers nationwide to receive SAGE certification for LGBTQ+ care.
• Nii-Quartelai Quartey, MA, Ed.D, AARP’s senior advisor and national LGBTQ+ liaison and key spokesperson for the AARP’s 2018 research report, “Maintaining Dignity,” which looked at concerns of LGBTQ+ Americans age 45 and older.
• Joe Wardenski, MPP, JD, counsel at Relman, Dane & Colfax, a national civil rights law firm based in Washington, D.C. He is co-counsel on Walsh v. Friendship Village, a Fair Housing Act case challenging a St. Louis-area senior living community’s refusal to allow Mary Walsh and Bev Nance, a married same-sex couple, to live in their community because of their relationship.

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KHN columnist Judith Graham speaks with Sarah Szanton, director of the Center for Innovative Care in Aging at Johns Hopkins School of Nursing, about helping people age with independence.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Here’s our coverage, done in partnership with NPR:

• Taken For A Ride: After ATV Crash, Doctor Gets $56,603 Bill For Air Ambulance Trip
• Will Congress Bring Sky-High Air Ambulance Bills Down To Earth?

Note: During this discussion, we incorrectly referred to the Airline Deregulation Act of 1968. It became law in 1978.   

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Although Californians and  overall are living longer with cancer, some communities fare better than others. There are many reasons for this cancer divide. Certain groups may not have regular access to doctors or cancer screening. Smoking and physical inactivity play a role, as does exposure to air pollution.

On Friday, Kaiser Health News senior correspondent Anna Gorman discussed cancer disparities with Dr. Kenneth Kizer, a University of California-Davis professor. Kizer is the director of the Institute for Population Health Improvement, which works with the state Department of Public Health to manage California’s cancer registry.

Survival differs based on race and ethnicity, geography and income, Kizer said during the discussion.

“Overall, as a blanket statement, people who are poor and economically challenged do less well than people who are not in that situation,” he said.

Kizer explained that many factors influence how long people live with cancer, including whether they have access to cancer screening and high-quality treatments. Having health insurance increases the odds of getting better care, he said.

“However, it’s not that simple, because not all health insurance is the same,” he added. “So, the better health insurance you can get the … more likely you’ll end up in a place where you can get evidence-based treatment.”

To read Gorman’s previous coverage about how Californians with cancer are faring, please click here.

This story was produced by , which publishes , an editorially independent service of the .

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Kaiser Health News senior correspondent Liz Szabo moderated a discussion a panel of experts to explore overtreatment.

Our panelists were:

• Dr. Louise Davies,  An associate professor of  otolaryngology – head and neck surgery in The Dartmouth Institute for Health Policy & Clinical Practice
• Dr. Saurabh Jha, an associate professor of radiology at the University of Pennsylvania
• Dr. Barry Kramer, director of the division of cancer prevention at the National Cancer Institute
• Dr. Jacqueline Kruser, a pulmonologist and critical care physician at Northwestern University Feinberg School of Medicine
• Dr. Ranit Mishori, professor of family medicine at the Georgetown University School of Medicine.

Ñî¹óåú´«Ã½Ò•îl Health News’ coverage related to aging and improving care of older adults is supported in part by .

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Here’s the recent story he wrote on the topic. Click here to view the files.

For more in-depth conversations with KHN reporters, check out our .

Ñî¹óåú´«Ã½Ò•îl Health News’ coverage related to aging and improving care of older adults is supported in part by .

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Here’s a recent story she wrote on the topic and others she has done as part of the Treatment Overkill series.

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Nicotine.

Some “e-juice” manufacturers are cloaking their highly addictive products in deceptively enticing packages such as miniature whipped cream cans — a marketing ploy that anti-tobacco advocates say targets young people. Other e-juice offerings look like tiny bottles of Sriracha sauce, apple juice boxes or cartons of vanilla wafers and Twinkies.

“E-juice,” or “vape juice,” is a flavored liquid that contains nicotine and is inserted into, and heated by, electronic cigarettes or vapes, which deliver the nicotine as vapor that users inhale. And they come in thousands of , including rainbow candy, peanut butter and jelly, strawberry melon, and chocolate milk.

On Thursday, California Healthline’s Ana Ibarra and Emily Bazar, along with Steven Jensen, project director for Yolo County’s tobacco prevention program, discussed the enticing flavors and packaging — as well as some misleading vaping devices.

Take the Juul, a , who are puffing it in school bathrooms and in class when teachers aren’t looking.

The Juul looks like a flash drive and can be charged using a USB port on a laptop. Many educators have mistaken it for just another trendy tech gadget.

But a Juul nicotine cartridge, known as a “pod,” delivers about 200 puffs — and about as much nicotine as a pack of cigarettes.

Teens are getting hooked and schools are taking notice. Across the country, educators are teaching their staff and parents about the dangers of the Juul and similar devices.

E-cigarettes and flavored nicotine liquids also have caught the attention of public health officers and local governments.

California’s Department of Public Health in April launched its “” campaign to educate parents about some of these products.

And some California communities, including , have banned the sale of flavored e-cig products. Others are trying to do so.

On Tuesday, voters in San Francisco will decide on “,” a measure that would ban the sale of flavored vaping liquid and other flavored tobacco products.

Ñî¹óåú´«Ã½Ò•îl Health News' coverage of these topics is supported by and

This story was produced by , which publishes , an editorially independent service of the .

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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