BOOK REVIEW: Being Mortal by Atul Gawande

by Janet Simpson Benvenuti

Let’s talk about death, or better yet, dying. Our guide is Dr. Atul Gawande, brilliant surgeon and best-selling author, who weaves a compelling narrative that informs, enlightens and challenges clinicians and senior housing leaders to improve the way our institutions of care impact lives. Unlike his previous books The Checklist Manifesto: How to Get Things Right, Complications: A Surgeon’s Notes on an Imperfect Science, and Better: A Surgeon’s Notes on Performance, Gawande gets personal in Being Mortal: Medicine and What Matters in the End, with a perspective enriched by his father’s end-of-life journey. “We are not ageless,” Gawande writes, pushing readers past the denial that afflicts both the physician and the patient. Our goal, he continues, is “not a good death, but a good life to the end.”

The challenge, of course, is how to achieve that goal when only three percent of medical students receive training in geriatrics. While Gawande and his colleagues at Ariadne Labs focus on physician education, Being Mortal provides insights that readers can use with their own families.

My favorite tip was his description of ODTAA Syndrome, the signature way to tell when a patient or loved one is nearing the end of their lives. ODTAA Syndrome is when one experiences “One Damn Thing After Another,” a sure sign that the body is weakening and starting to fail. While the medical community uses clinical markers and checklists for stages of dying, this intentionally amusing name most clearly describes what families experience.

Long before ODTAA syndrome begins, older people with medical concerns face three housing choices: aging in a home setting with assistance, moving to an assisted living community, or moving into a skilled nursing home. While each option has benefits and challenges, Gawande describes resources worthy of consideration.

1. The Eden Alternative – As a new medical director of Chase Memorial Nursing Home, Dr. Bill Thomas found that residents were suffering from boredom, loneliness and helplessness. His solution? Admitting 100 winged and six four-legged residents. Gawande shares this hilarious story about the founding of the Eden Alternative; you may find nursing home communities that subscribe to their philosophy here.

2. Assisted Living Communities – As a caution to families, Gawande reminds us that today only 11 percent of assisted living communities “offer both privacy and sufficient services to allow frail people to remain in residence,” the original intent of Dr. Keren Brown Wilson, the founder of the first community for assistance in Portland, Oregon. One of the model organizations recorded by Gawande is Sanborn Place, led by friend Jacquie Carson who provides the kind of passionate advocacy and skilled care all elders deserve.

3. Palliative and Hospice Care – Perhaps the most useful guidance in Being Mortal were the examples of how patients, including his father, weighed treatment options during the last few years of their lives. Highlighting the importance of palliative consultations and hospice care, Gawande used his father’s fear of becoming a quadriplegic to demonstrate those often difficult conversations about care options, conversations that are the focus of the 5 Wishes, The Conversation Project, and the popular card game My Gift of Grace.

Here is an excerpt of the questions a physician trained in palliative care might ask.

1. What do you understand your prognosis to be?
2. What are your concerns about what lies ahead?
3. I need to understand how much you are willing to go through to stay alive.
4. What are your goals if your condition worsens?
5. If time becomes short, what is most important to you?

Unfortunately, until more physicians and health care providers are trained in palliative care, it remains for family members, especially those who are designated as health care agents, to clarify their loved one’s wishes. Being Mortal gives families insight into how to have those conversations. Buy a copy and use it to start the conversation with those you love.

HIGHLY RECOMMENDED. You may purchase a copy here.Being Mortal: Medicine and What Matters in the End

c 2014 Circle of Life Partners, LLC. All rights reserved.

What Immigrants Teach us about Aging

Bowne Park 2014 by Janet Simpson Benvenuti

Last Sunday, my early morning walk took me to Bowne Park in North Flushing, NY an oasis of trees, grass and walking paths surrounding a pond in the borough of Queens. I wandered past the neatly manicured lawns of single family homes first built by the successful physician and attorney sons of Irish and Italian immigrants, now inhabited by their Korean and Chinese counterparts. I joined the dog walkers doing laps around the park, past the basketball court where my son once played, perfecting his three point shot through a chain-link hoop. On one end of the court, a future Jeremy Lin practiced his layup while on the other, four grandparents stretched in synchronous motion, practicing their tai chi.

Ahead, an elderly woman stepped up and down the on the lower rung of the climber where my daughter once scampered gleefully showcasing her skills on the slide and jungle gym. On my left, another did gentle pushups on the back of a park bench near which two men and a woman chatted, speaking in tongues and sharing a laugh.

I live in two worlds. In one, I engage with global leaders worried about an aging America. State governments shudder at the cost of long-term care. Health care providers predict rising demand while business leaders offer employees flexible benefits and housing leaders construct more assisted living complexes, anticipating future demand from aging boomers. In this world, I speak nationally about strategies for supporting an older America, coach families who need guidance through the perplexing maze of available options while encouraging entrepreneurs bursting with ideas that can make a difference.

In the second world of my personal life, I see easy solutions that are blind spots to those whose vision of the future includes separating seniors from their families. I returned home from my walk, climbed the front stairs, and unlocked the door of my mother-in-law’s home that I have shared for the past twenty years. Despite the street appearance of a single family home, the interior opens to three separate apartments each inhabited by family members. As children and teenagers, a visit to grandparents by my children meant running upstairs while a trip to their great-aunt and uncle required a loop outside to the backyard and three steps back inside to knock on their kitchen door. My husband, his brother and cousins were raised in this home along with their grandmother after whom our daughter and niece are named.

This week, we put the family home up for sale. At 89, it’s time for my mother-in-law to transition to a new home closer to her physician son. With only two days notice, 19 realtors attended the open house, and we received 15 offers within five days, all but one from Asian families planning to use the home as it was intended, a place of inter-generational love and support, with walking access to stores, the post office, buses and the railroad, a 20 minute commute to downtown Manhattan.

In few decades, my husband and I will need to downsize. Will we move into a retirement community in a sunny locale, find an assisted living community to live with strangers, or will we build a new three family home and invite our children and theirs to grow old with us? Only time will tell.

c 2014 Circle of Life Partners, LLC. All rights reserved.

Dancing with Parkinson’s Disease

by Janet Simpson Benvenuti

On October 2nd, 200 filmmakers representing more than 50 countries will arrive at the Mill Valley Film Festival in San Francisco. Since 1977, this festival has celebrated the best in American independent and foreign films, launching new filmmakers and films including Slumdog Millionaire, The King’s Speech, The Artist, Argo, and 12 Years a Slave. This year among the festival goers will be one of the most acclaimed modern dancers, David Levanthal, who will be screening his film entitled Capturing Grace.

Capturing Grace is a love story about professionals whose love for dance inspired them to share their gifts with people living with Parkinson’s Disease, a movement disorder. The story began thirteen years ago at a dance studio in Brooklyn, NY, home of the renown Mark Morris Dance Group (MMDG). There David Levanthal, one of the MMDG performers, created and led a dance program called Dance for PD. Since its inception, the program has become an international success, engaging professional dancers worldwide in bringing the joy of dance and movement to those living with disease.

Every 9 minutes another person learns that they have Parkinson’s disease, and the symptoms of the disease, shaking hands, tremors, stiffness, can lead to social isolation and a lower quality of life. Aside from the physical benefits, Dance for PD returns sense of community, collaboration and fun for teacher and student alike.

Today, Levanthal is working full-time to expand the reach of Dance for PD. Capturing Grace, is his call to action. See the film and consider supporting Levanthal’s mission here. If you know someone living with Parkinson’s disease, look for this program locally as many assisted living communities and hospitals, such as Emerson Hospital, have incorporated Dance for PD into their health and wellness offerings.

Shall we dance?

c 2014 Circle of Life Partners, LLC. All rights reserved.

Alive Inside – Music and Memory


by Janet Simpson Benvenuti

This year at the Sundance Film Festival, the 2014 Audience Award was given to a documentary about Music and Memory called “Alive Inside.” The film is a story about the power of music to reach into the minds of elderly men and women, enriching their lives and reconnecting them to their personal music history. Not long ago, a clip from the film about 90-year old Henry became a YouTube sensation. The full documentary began showing in Landmark Sunshine theaters around the country starting July 25th in NY, Toronto and Washington; August 1st in Boston, LA and Philadelphia; and August 22nd in Dallas, Atlanta and Seattle. To find where the film is playing near you, click here.

If you don’t get to the theater, you can help support the lives of seniors across the country by donating money or your unused ipods to the non-profit Music & Memory led by Dan Cohen. Dan’s organization also provides training and materials to healthcare professionals who want to offer the gift of music to those under their care. You may learn more here.

The next time you visit a relative living with dementia, try to engage them with music. As you may know, my mother lived with Alzheimer’s disease for 17 years and in her later years, we played the music she loved routinely during our visits. Perhaps that’s why she retained cognition through the end of her life. Here is one of her favorites from the Andrews Sisters. What music would reach your loved ones?

Of Mice and Women: His and Her Healthcare

Lab Miceby Janet Simpson Benvenuti

What do mice have to do with men and women’s health? It turns out, nearly everything.

Here are a few surprising facts.

  • Most medical research begins in laboratories using mice. Until 20 years ago, researchers used only male mice, finding the hormonal cycles of female mice an ‘unnecessary’ complication in experimental design.
  • Despite laws today that require all government-funded research to include females in animal and human studies, the sex of the animals is not often stated in published results.
  • Further, when clinical trials begin, researchers frequently do not enroll adequate numbers of women or, when they do, they fail to report data separately by sex.

Why does sex matter? Because many diseases, medications, and medical devices impact men and women differently. Here are just a few examples.

Perhaps you saw the report filed by Leslie Stahl on 60 Minutes about Ambien, a commonly prescribed medication, that found women need half the dosing typically recommended by their physicians. Do other drugs need to be adjusted? Most likely, we just don’t know which ones.

Perhaps you know that more women die each year from lung cancer than from breast, ovarian and uterine cancers combined, and that nonsmoking women are three times more likely than nonsmoking men to get lung cancer. We still don’t know why.

Perhaps you  watched Dr. Johnson’s TED talk, where she explained sex differences in heart disease and depression, cancer and Alzheimer’s disease and how attention to sex differences in medical research that is already funded and underway will benefit both men AND women’s health.

What does this mean for you and your family?

Make it a habit to ask your physicians if the treatment, diagnostic tests, or medications being prescribed work differently for women and men. They may not know the answer when you ask, but the question may prompt them to find out.

Read “Why Women’s Health Can’t Wait” written by the Connor’s Center for Women’s Health and Gender Biology. Join their Call to Action to hold federal agencies, medical device and pharmaceutical researchers accountable for how their studies address sex.

Consider supporting the work of Dr. Johnson and her colleagues, tireless advocates for Women’s Health, as they work with Congress and leading research institutions to address this issue.

Collectively, we can improve the health of our mothers and grandmothers, sisters and daughters as well as the men in our lives by insisting that the science behind health care accounts for sex differences.

Who knew that mice were so important to our health and well-being?

© 2014 Circle of Life Partners, LLC. All rights reserved.

 

 

 

Broads Talk Money, Careers and Families

Professional Womenby Janet Simpson Benvenuti

On June 5th, I’ll be joining a panel of financial advisors in Boston to discuss the unique financial challenges that women need to manage over the course of their lives and careers. As members of 85 Broads, we are committed to the economic empowerment of women. As founder of Circle of Life Partners, I’m committed to helping adult children – men and women – successfully support their aging loved ones without negatively impacting their careers, health or financial well-being.

Free and open to non-members, encourage the women in your life – colleagues, spouses, sisters, and college-aged daughters – to join us and learn how best to avoid or navigate financial mistakes and increase financial confidence. Click HERE to register.

June 5th, 5:30 – 8:00 PM
Federal Reserve Bank of Boston
600 Atlantic Avenue, 4th Floor
Boston, MA

Panelists:
Cathy Burgess, Morgan Stanley, CFP, ADPA
Janet Benvenuti, Circle of Life Partners, Founder
Deirdre Prescott, Sandy Cove Advisors, President & Founder
Dionne Gumbs, Wealthrive, Founding Partner

Moderator:
Kathleen McQuiggan, 85 Broads Boston Chapter Co-President

© 2014 Circle of Life Partners, LLC. All rights reserved.

Know Your Money: The True Cost of Long Term Care

Calculating the Cost of Care

Calculating the Cost of Care

by Janet Simpson Benvenuti

Recently I asked our financial advisor to do some retirement planning and estimate expenditures through the end of my life. To my surprise, my husband and I both are going to die at age 87 (for the record, I will predecease him), spending $100k/year in today’s dollars for each of the last three years of life. Amused, I wondered where I would find care for $100k in Massachusetts. The last assisted living facility with a memory unit I visited cost $8700/month without hairdressing or a personal care attendant. I’m sure to need both. And only three years of care? Prudently, one would plan for at least six, and with any history of longevity or cognitive impairment, I would plan for 12.

That same day, I spoke with a different financial advisor whose 91 year old client has Alzheimer’s disease. He and his spouse reside in Connecticut and spend a more typical $15,000 a month for assisted living with an aide for additional support, $180,000/year. When I reminded that advisor that home care for someone with Alzheimer’s disease is tax deductible as a medical expense, she expressed surprise, unaware of IRS Publication 502.

What’s going on here? Why are financial advisors so ill-informed about the true cost of care?

Quite simply, few people, including financial professionals, understand the extraordinary cost of long-term care and the options available to manage expenditures wisely in the last decade of life.  Effective financial planning requires more than just the skills to create an investment portfolio or project future expenses, but integrated knowledge about finance, elder law, insurance, health care and inexpensive community resources for aging in place. It’s why I founded Circle of Life Partners.

I’ve been guiding families through the aging journey for years, yet I still find the numbers shocking. Recently, I received a call from a family of three adult children who were growing concerned about their mother’s ability to care for their father safely at home. He was three years past his initial diagnosis of Alzheimer’s disease and the family felt he might be best served by moving into an assisted living facility with a memory unit although he did not have long-term care insurance. I calculated the price tag for nine years in a highly-regarded memory unit and subsequent skilled nursing care, $835,000- $1.25 million. Using an adult day health program or a part-time companion suddenly seemed a much more reasonable option.

Last week, I wrote about the Bipartisan Policy Center (BPC) launch of a new initiative on long-term care led by former Senate Majority Leaders Tom Daschle (D-SD) and Bill Frist (R-TN), former Congressional Budget Office Director Alice Rivlin, and former Wisconsin Governor and Secretary of Health and Human Services Tommy Thompson.  BPC’s Long-Term Care Initiative will propose a series of bipartisan policy options in late 2014 to improve the quality and efficacy of publicly and privately financed long-term support services. Read the white paper here to learn more and follow their work @BPC_Bipartisan.

Let’s hope they can get their arms around this issue. Until they do, I’ll continue guiding families to the resources they need, until I need the same support, at age 84.

©2014 Circle of Life Partners, LLC. All rights reserved.

Listen to Bipartisan Policy Center discuss Long-Term Care

Lonely adult child and parentby Jan Simpson Benvenuti

On Monday, April 7th at 1pm EST, the Bipartisan Policy Center in Washington, D.C. will host an event to discuss sustainable ways to finance and deliver long-term care services. The numbers are staggering. Today, there are 12 million seniors, veterans and disabled adults who need long-term care support and services; that number will jump to 27 million by 2050. As anyone who has cared for a loved one can attest, the time, energy and expense involved in supporting an ill family member can easily deplete a family’s resources, compromise the health of the family caregivers, and disrupt careers and relationships. Listen to the broadcast here.

 

© 2014 Circle of Life Partners, LLC. All rights reserved.

 

The Genius of Marian


by Jan Simpson Benvenuti

Last October, I attended a research symposium hosted each fall by the Cure Alzheimer’s fund. I arrived early to see a film entitled, The Genius of Marian, a documentary that follows Pam White in the early stages of Alzheimer’s disease as she and her husband adjust to the changes that enfold their lives. Daughter of artist Marian Williams Steele, Pam was working on a memoir about her mother when she was diagnosed with early-onset Alzheimer’s disease. Vivacious and engaging, Pam’s early journey with illness is captured in film by her son as her husband, Ed, assumes the role of full time caregiver. Unlike the Notebook or other movies depicting Alzheimer’s, this film captures the ebb and flow of a family adjusting to a “new normal” without the distortion of reality required to sell tickets.

The Genius of Marian is being shown throughout the country and it comes to Boston, January 22-30, 2014. If you work as a healthcare professional or know someone recently diagnosed with Alzheimer’s disease, I highly recommend seeing this film. You may purchase tickets for the Boston event here. If you are interested in hosting a screening of this film for your employer or non-profit, make your request here.

And, of course, if you want to support researchers working toward a cure, consider a donation to the Cure Alzheimer’s Fund, the Alzheimer’s Association or the McGovern Institute for Brain Research.

c 2013 Circle of Life Partners, LLC. All rights reserved.

Advanced Style, Fashion Over 60+

by Jan Simpson Benvenuti

My teenage daughter would tell you that I’m fashion challenged. Although I remind her that I’m at an age when comfort, not fashion, is my priority, she is factually correct. I have little interest in following fashion trends and I keep my clothes far beyond their expiration date. I do own suits and silk blouses along with dresses appropriate for church or a cocktail party, but my daughter and her 87-year old grandmother have something that I lack, a unique sense of style. My daughter can wear vintage or designer clothing and look ready for Vogue while her grandmother, dressed over Thanksgiving in a green corduroy jacket with a tweed cap and an orange scarf, looked, and likely felt, 20 years younger than her chronological age. Both light up a room by just walking into it.

Last year, I read about Ari Seth Cohen who set out to photograph older women with style. His blog and recently published book are called Advanced Style. You might find his photographs inspiring, just like the women in your life.

© 2013 Circle of Life Partners, LLC. All rights reserved.