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Partnering For Better Care With e-Patient Dave’s Handbook

Posted on August 29th, 2013 by karen

by Kim Keller

Let Patients Help! is the title of a handbook written by a leading patient-engagement advocate, Dave deBronkart, better known as e-Patient Dave. With the assistance of Danny Sands, his primary care physician, deBronkart created this easy-to-read and practical guide to help doctors, nurses, patients and caregivers learn how to work together as partners, which is the ultimate prescription for quality care.

A little background: In January 2007, after a routine visit to the doctor, deBronkart was given devastating news — he was diagnosed with stage IV kidney cancer and told there was little hope he could survive it. That’s when e-Patient Dave was born.

With no known treatment available, deBronkart started his research, desperately hoping to find some little-known treatment option that might save him. Sure enough, that’s exactly what happened: he found an online patient community — acor.org — that told him about a clinical trial at Beth Israel Deaconess Medical Center in Boston. By July 2007, deBronkart’s treatments were over, and by September it was clear that he had beaten cancer.

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Wrenching Choices At The End Of Life

Posted on June 18th, 2013 by karen

by Joan Blumenfeld, MS, LPC

If I’ve told my children once, I’ve told them a thousand times. “When I’m near the end of my life, give me a good glass of wine, play me some Mozart, and LEAVE ME ALONE!”

I’m being only partly facetious. The wine and the Mozart are easy. Leaving me alone without trying to fix me is the wrenching part. Believe me, I know. I muddled through this process with three family members whom I loved deeply, and I’ve watched families of my frail, elderly clients go through the same experience.

Even when advance directives and living wills are as specific as they can be regarding Do Not Resuscitate orders, feeding tubes and ventilators, families still struggle with the decisions. There are conflicting views within the family, as well as conflicting medical advice, not to mention the uncertainty and fear in their own hearts and minds.

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Life With Pop: Robin

Posted on April 18th, 2013 by karen

An excerpt from the book, Life With Pop: Lessons on Caring for an Aging Parent, by Janis Abrahms Spring, Ph.D., with Michael Spring.

“My father’s colon cancer has returned,” a patient named Robin tells me. Her healthy glow belies her emotional fragility. “The chemo didn’t work, and the doctors aren’t optimistic. He’s only seventy-seven. I can’t imagine life without him.”

Robin’s eyes well up, and she begins to sob. “He’s been the best dad in the world. My rock. How will I go on when he’s gone? How do people do it — losing someone they love so much?”

I sit facing Robin, paralyzed. Should I tell her the truth — that I ask myself the same question every day and have no answer? I could tell her I know what it’s like to feel terrified and alone, but why burden her with my story?

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Just As Grandma Would Have Done For You

Posted on February 14th, 2013 by karen

Illustration by Sergey Sachkov, from “Grandma’s Cobwebs”

by Karen Capuciati Keller

“I stay awake for a long time and decide it’s my turn to help take care of Grandma, just like she used to take care of me. I feel very grown-up. It feels good.”

Such are the thoughts of the little girl named Claire in Grandma’s Cobwebs: A Story For Children About Alzheimer’s Disease, by Ann Frantti. It takes a while, though, for Claire to reach the level of understanding evidenced in the above quote. Claire can’t quite fathom the disease at first. And that’s the story of the book, tracing Claire’s learning curve about Alzheimer’s, from her denial that the disease has changed her grandmother in any way, to her witnessing episodes of forgetfulness and danger, to finally coming to grips with the “cobwebs” in Grandma’s head. Like any youngster, Claire has trouble processing a disease she can’t see any evidence of, but her world gets turned upside down when she begins to experience her beloved grandmother’s struggle with memory loss. Claire’s emotional disruption leads to a family reconciliation that opens the door to a new acceptance of Grandma’s diminished capacities.

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A Great Bagel

Posted on January 10th, 2013 by karen

An excerpt from the book Life With Pop: Lessons on Caring for an Aging Parent by Janis Abrahms Spring, Ph.D. with Michael Spring.

July 25, 2003

Dad and I pay a visit to his eighty-five-year-old friend Arthur Levy, who was struck down by Alzheimer’s and a stroke, and is living, if you can call it that, in the Hebrew Home and Hospital.

Dad can’t walk far these days, so I sit him in a wheelchair and push him into the facility, first stopping at the front desk to ask for Arthur’s room number. “He’s on the second floor,” the receptionist tells me. Oh, no. The Hebrew Home is like a filing cabinet. If you’re on the first floor, you’re in rehab and recovery is possible. On the second, you’re filed away for life. The only way out is through the basement, the morgue.

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Hoarding: An Intractable Problem

Posted on December 4th, 2012 by karen

by Joan Blumenfeld, MS, LPC

My 85-year-old client, Mike, was a charmer. Even though he was becoming increasingly confused and forgetful, he had a way about him. He was articulate, gracious and a good conversationalist. He had many interesting stories to tell about his family history and his many years curating a world-class museum of Islamic Art.

Mike was attractive, though a little down at the heels in his attire. He carried a bunch of keys on dirty strings around his neck. Some were to the door of his apartment and his mailbox, some for his car, and some which no longer held any recognizable purpose. Mike’s old friends had either passed on or moved away, and his family lived at a great distance. Mike had consequently become seriously isolated.

And worse yet, Mike was a hoarder. He didn’t collect things that had any intrinsic value, like coins or antiques or stamps. Instead, he hoarded old newspapers: The New York Times, The Wall Street Journal, the local town paper. He saved outdated calendars with photos of sports heroes and mountain landscapes and sailing craft.

He collected dozens upon dozens of greeting cards that he thought he might want to send to friends, but somehow never did. There were solicitations from every wildlife organization on the planet; from every Indian reservation in the USA; from local and national charities of every description; not to mention bank statements from years back and, most threatening of all, unpaid bills and import renewal notices of all sorts. In fact, papers were stacked several feet high on every available surface in Mike’s apartment, except for the kitchen and the bathroom.

Mike could not bear to part with one single scrap of paper. He felt an urgent need to keep everything . . . just in case. He thought that one day he might want to read an interesting article he’d overlooked or donate to a charity he’d forgotten about. The very thought of cleaning out his apartment was completely overwhelming, even paralyzing.

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FORKS OVER KNIVES: Food For Thought

Posted on October 25th, 2012 by karen

From our garden to our table.

by Karen Keller Capuciati

“Someone has to stand up and say that the answer isn’t another pill. The answer . . . is spinach.”
— Bill Maher

I got a text late last night. A childhood friend told me that her father has lung cancer. It was a terrible shock, and I’m pained to think that someone so wonderful as her dad now has to battle with cancer.

What I wanted to tell her, and everyone dealing with cancer — or heart disease or diabetes, for that matter — is this:

WATCH the documentary, Forks Over Knives, and watch it now, rather than later.

This 90-minute film is chock full of research and firsthand accounts that illustrate a critical central point: Eliminating or reducing the refined, processed and animal foods from our diet can prevent, stop and even reverse serious chronic diseases like those mentioned above.

After watching this film, my husband Peter and I wrote in huge letters on our kitchen blackboard: EAT PLANTS! It was like sticking a flag in the ground to emphasize our commitment, to mark our territorial intent. The facts presented in the film are so persuasive, Peter and I were compelled to make this lifestyle change immediately.

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Poetry of Healing: Closer To Me

Posted on September 6th, 2012 by karen

by Karen Capuciati

Christine Sherwood’s Closer To Me, a selection from her book, Help Me Remember Who I Am, is a mystical poem that speaks on many levels: accepting struggle as part of our life; transcending fear to experience peace; recognizing freedom in the present moment.

Christine said this poem represents her own passage into a state of forgiveness. She had struggled, naturally, wondering why cancer happened to her, but eventually learned to accept that life doesn’t always go the way you plan. She managed to let go of the anger and pain she felt about cancer altering her life, and by dropping that baggage, she found a way to welcome the life that lay ahead of her.

As we’ve mentioned before, Christine considers herself more of a conduit than a writer. She feels she simply captured the poems with pen on paper when they emerged from her soul during her recovery from a long, difficult battle with rectal cancer. “Sometimes I did not even understand what I was writing,” Christine explains in the book’s foreword. “Over time the poems revealed much about my process.”

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Your Legacy of Love: Realize the Gift in Goodbye

Posted on August 8th, 2012 by karen

by Karen Keller Capuciati

If one of your parents died, which would you prefer: To inherit their wealth or receive a letter saying how much they loved you?

This question was posed in an independent study performed by Gemini Adams, grief expert and author of the award-winning book, Your Legacy of Love: Realize the Gift in Goodbye. Of the 250 respondents, more than 90% chose the letter.

Gemini was only 21 when her mother, BBC broadcaster and journalist Andrea Adams, died of ovarian cancer in 1995, at the age of 49. Gemini believes that overcoming her subsequent grief was more difficult than the people around her ever realized. In her book she claims that she faltered for many years after her mother’s passing because she lacked the support and encouragement her mom had typically provided her. “It was a time when I should have been starting my adult life, independently carving out my own unique path,” she writes. “But, unlike my peers — who were making confident progress in their lives and careers — I bounced hopelessly between bewilderment and deep despair.”

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So Many Goodbyes Along The Way

Posted on June 11th, 2012 by kim

by Judy Prescott

This article was originally published at MariaShriver.com and is being republished with permission.

Despite having witnessed Cecy’s 12-year journey through the rough seas of Alzheimer’s disease, her recent death came as a surprise.

I knew I was losing her, certainly. I’d been informed that a seizure would probably take what was left of Mom’s magnificent life force, yet I was completely blindsided.

There is a bit of magical thinking required to endure such a complicated journey with a loved one. We tell ourselves, she “looks great,” she’s “healthy as a horse,” she’s “gaining weight.” How else could we manage such a slow, painful descent into the maelstrom?

I am not one who ever thought of my beautiful mother as just a shell of her former self. Cecy’s fiery Irish spirit was always evident in those impossibly blue eyes.

Cecy gave me the incredible gift of her continued presence, despite the anguish it caused her, by always keeping one foot planted firmly on this earth. She went above and beyond to help me feel her love and encouragement, regardless of her own physical limitations. She knew that I was able to see her and that she continued to make a difference in my life.

Although we lived on opposite sides of the country, my connection with Mom remained strong throughout her illness. She was part of my daily consciousness. Cecy was part of me.

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