In Observance of Jessie Gruman

jessie-gruman picOn July 14th, 2014 we lost a truly outstanding woman to her battle with a long time illness. Jessie Gruman was the president and founder of the Center for Advancing Health. A true patient advocate, she promoted not only patient engagement but the use of evidence-based medicine to support the adoption of healthy behavior.  In addition to her professional career, Gruman defined herself as a musician, avid reader of poetry and interested in foreign policy, the media and global health. She was a true disruptive (more…)

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Who Will Take Care of You at Home if You’re Seriously Ill?

It turns out that the hilarious British spoof on the horrors of the Man-Cold might be truer than we ever imagined. The joke reality here is that when a husband gets sick, his wife is naturally expected to become his doting caregiver, but when a wife gets sick, she may feel distinctly on her own.

A study presented last month at the annual meeting of the Population Association of America actually reported that the risk of divorce among married couples rises when the wife – but not the husband — becomes seriously ill. (more…)

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Working on a Dream: Reflections on The White House Summit on Working Families

Janice Lynch Schuster

In the late 1940s, my grandmother found herself a single mother of three, living far from family in Washington, DC, where she had moved to be a Government Girl during the war. A graduate of Smith College, and the child of Irish immigrants, she worked as many jobs as she could, and I often heard stories about her nights spent cleaning spittoons in dentists’ offices, or making dollhouse furniture on a lathe. At some point, unable to manage so much on so little, she sent her children to boarding schools run by the Catholic Church. My mother was five; the only story she shares about those years is about her joy when she was finally old enough to go home again, and to let herself in to the apartment after school. Eventually, my grandmother completed a master’s degree in science, and worked as a researcher for the U.S. Department of Agriculture. She was always my hero. (more…)

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Life and Death in Assisted Living: A FrontLine Special

MedicareAmerica is aging and it is aging quickly.

Currently, about 1 in 8 Americans are 65 years of age or older. It is estimated that this number will balloon to  72.1 million persons over the age of 65, or 19% of the population, by 2030.

As we explored in our eBook, the Different Faces of Caregiving, securing proper support for members of the aging population is a very difficult task.  And more often than not, families face significant financial difficulty in securing proper housing and care for their loved ones when they are no longer able to care for themselves. (more…)

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Why Low-Income Seniors Fail to Get Help Paying for Health Care

Trudy-Lieberman -- biggerA couple weeks ago, the Medicare Rights Center, a well-known New York-based advocacy group, released a report card showing how well seniors are faring with Medicare. The report is a good barometer of the troubles beneficiaries face when navigating Medicare’s very complicated system for getting health care.

One particularly compelling finding popped out: 21 percent of the 14,000 callers to the Center’s national help line in 2012 had trouble covering the cost sharing that Medicare requires. This means that almost a fourth of seniors struggle with paying the deductibles for Part B – doctor and outpatient services – and for Part D, the drug benefit. They struggle to pay the coinsurance and co-pays as well, some required by Medicare and some increasingly required by Medicare Advantage plans. That’s an amazing statistic for a social insurance program that started out covering nearly all of a senior’s medical expenses. (more…)

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A Tragedy of Civic Commons: The TimeBanking Approach to Caregiving

October’s Man of the Month is  Dr. Edgar S. Cahn. A disruptor in his own right, Dr. Cahn co-founded with his late wife Jean Camper Cahn, Antioch School of Law; the first law school in the United States to educate students through clinical training in legal services to the impoverished. In an effort to involve communities in promoting systems of self-help, Dr.Cahn began the Time Dollars project, a service credit program that operates in over 70 communities in the United States, Great Britain and Japan. Today, he shares with us the importance of Timebanking and how it can be applied to the field of caregiving. (more…)

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The Good and Bad Of Healthcare For Special Needs Children

healthspecialchilder1Many doctors are amazing at what they do and their expertise is essential in taking care of a child with special needs. However, as a mother, I have an amazing gift too – the gift of knowing and understanding my child better than any doctor ever will, no matter how skilled or brilliant. (more…)

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Elder Care & Elder Rage: Know the Warning Signs of Alzheimer’s

Jacqueline Marcell 1.20MB 1920x2560 - CopyFor eleven years I pleaded with my ‘challenging’ elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I went ahead and hired soon sighed in exasperation, ‘Jacqueline, I just can’t work with your father. His temper is impossible to handle and I don’t think he’ll accept help until he’s on his knees himself.’ (more…)

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When Dealing with Alzheimer’s, Remember the Caregivers

Jodi at Alz Association lunchIt can be fascinating, inspirational, even intoxicating to attend a medical conference. The recent Alzheimer’s Association International Conference (AAIC) in Boston was all that and more.

With almost 5,000 scientists, physicians and others seeking a treatment or cure for Alzheimer’s, it was easy to leave the conference on a high. There is tremendous hope for the future owing to the many smart people who are working to beat this disease. Heading home I thought about the many developments that I was excited to share with my colleagues. (more…)

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Care Coordination, the Family Caregiver, and our Broken Safety Net System

MaryAnne_Sterling_PictureMy husband and I looked at each other a few months ago and made the heart-wrenching decision that we could no longer afford to pay for my mother to reside in an independent living community (in addition to our own financial responsibilities). Besides, she was at the point where she needed assistance with some of her daily living activities, a service not provided in “independent” living. Next stop: assisted living. We knew, due to mom’s lack of resources, this would have to be accomplished under Virginia’s Auxiliary Grant Program, which falls under Medicaid. We also knew that she would be out of resources by the end of August.

What we didn’t know was how quickly this process would bring us to our knees.

(more…)

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An Interview with Jessie Gruman: A patient, health care reformer, and the recipient of caregiving

Jessie GrumanJessie Gruman is president and founder of the Center for Advancing Health (CFAH), a nonprofit, Washington-based policy organization which, since 1992, has been supported by foundations and individuals. CFAH works to support people’s engagement in their health and health care. Prior to founding CFAH, Gruman worked on these concerns in the private sector (AT&T), the public sector (National Cancer Institute) and the voluntary health sector (the national office of the American Cancer Society). DW talked with Gruman recently about her work and her perspectives on her role as a patient, health care reformer, and the recipient of caregiving. (more…)

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Lean Into the Sorrow

Regina Holliday

Last fall I was reading Sheryl Sandberg’s book “Lean In” on a plane.  I looked around my aisle at seats filled with business travelers and the majority of them were men.  As I read Sheryl’s thoughts on the fields dominated by men in positions of authority, I knew there was a field dominated by women: care giving. (more…)

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Caregiver Corps: Tapping A Nation of Caring People

Janice Lynch Schuster

For better or worse, Twitter changes the world. I got a whiff of its potential last spring, while participating in a regular Twitterchat (#eldercarechat), someone raised (Tweeted?) the question of what we want government to do to improve the lives of the nation’s 60 million caregivers, and added that we needed something like a Peace Corps for family caregivers.

That idea resonated with me—and with what I myself need at this juncture in my life. My young adult children, five between the ages of 19 and 23, struggle to find work—regular work, much less meaningful work—so that they can pay their bills, including college tuition and loans. My 92-year old grandmother has moved to Alaska to be with my aunt, and spends many of her days alone, her mind still longing for human connections, her body unable to get her there. (more…)

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Shannon’s Story: Confronting Ovarian Cancer

IMG_0738cMy name is Shannon.  I am from Charlotte, NC.  I am married. 

 

In July of 2009, I had just returned from my dream vacation to France.  Not even a month later, following a few trips to the gynecologist with complaints of abdominal pain, I was sitting in the office of a gynecologic oncologist.  I had never even heard those words used in a sentence.  I was being prepped for surgery to remove a cyst. 

(more…)


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Integrating the Patient Voice into Caregiving

Annie Levy

Excerpt from an Interview in Wired.com with Dr. Oliver Sacks:

Wired.com: Has your experience changed the way you relate to your patients?

Sacks: I hope I’m always sort of understanding with patients and try to understand their experiences but now, especially if I see visually impaired people, I can sympathize very intimately. . .There’s an epigraph that I quote in A Leg To Stand On
 from one of [Michel de] Montaigne’s essays in which he says that he would especially trust a doctor who had experienced some of what he had experienced. “Plato, therefore was right in saying that to become a true doctor, a man must have experienced all of the illnesses he hopes to cure. Such a man I would trust.” (more…)

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