The Joys of Dementia

by Jan Simpson Benvenuti

“Wouldn’t it be better if your mother died?” a friend asked over tea when I mentioned that my mother had Alzheimer’s disease. Too stunned to reply directly to her remark, I said simply, “Oh no, it’s not that bad,” and I quickly shifted our conversation to her children.

Die? I should have been outraged by her question, yet I learned long ago that many people consider memory loss to be worse than death itself. Would she have asked that question if I told her my mother had breast cancer?

Say the word “dementia” and the world shudders. Tweeters tweet, media moguls opine, and writers of blogs and books rail about the tragedy of memory loss. Yet most people have never actually lived with someone whose memory is fading, and many find the thought unnerving. My mother lived with memory loss for 17 years and I want to emphasize the word lived. For most of those years, she prepared meals, did the laundry, attended family gatherings, and loved her grandchildren. When my father passed away, one sister and I took her into our homes, concerned that she should not live alone.  During that time, I came to appreciate the benefits of not remembering, of forgetting the day-to-day indignities of aging, of living in the moment.

At the risk of offending your sensibilities, below is a list of five joys of having dementia.

1) You get to live in the moment again, just as you did as a child. Rain and snow, falling leaves and lightning, the best of mother nature becomes a source of wonder and delight. Do you recall when you measured time by the weather and the season and not the clock? Dementia returns you to that season of life.

2) Young children adore you because you’ll watch them play and perform with joy. My daughter and her friends were five when her Nana came to live with us. I still recall one Sunday afternoon when the girls, bejeweled and dressed with boas, tiaras, dresses and bangles, performed The Hungry Caterpillar over and over and over again. Each time my mother enjoyed the performance with fresh eyes.

3) You’ll forget the rules of life and break them. Eat dessert before dinner, why not?

4) You may forget the loss of your loved ones. After 59 years of marriage, my mother should have grieved for a year or more after my father’s passing. But, she forgot he died. She didn’t forget him, of course, she just forgot that he had passed away. “Does Bob know that I’m here?” she would ask. “Yes,” I’d lie, and we’d resume our activities for the day.

5) You’ll remind your adult children just by your physical presence to take care of their health, appreciate their loved ones, enjoy every moment of life, and not sweat the small stuff.

Dementia may rob your older relatives of memories, but it provides the family an opportunity to celebrate your time with them and convey important family values to your children. One Sunday I planned a special family dinner to celebrate my mother’s birthday. “Why are we celebrating her birthday?” my 12 year-old son complained. “It’s stupid, she won’t remember it.”  “Really?” I replied, “tell me what you remember about your first birthday party.”  He stopped complaining.

My son was right, my mother would not remember her party. But he would, and I would, too. It was our last celebration with her.

How do you enjoy time with your relatives who are growing forgetful? Here are 101 activities you may want to try.

I know, first-hand, the chaos that this disease causes for the elder and their extended family. Yet I refute the belief that those living with dementia have little to teach us in their last years. My mother, like many others, retained cognition through the end of her life using strategies I describe in Don’t Give Up on Me! Consider purchasing a copy through Circle of Life Partners; all proceeds are donated to support elders and their families.

©2015 Circle of Life Partners, LLC. All rights reserved.



Walk, Climb or Cycle for a Cause

by Janet Simpson Benvenuti

gu2201[1]An important part of our mission at Circle of Life Partners is to support the many non-profits that provide family services or support research toward finding a cure for diseases that impact seniors and their families. Warm weather brings countless opportunities to run, walk, cycle and raise money for a cause. Join us.

Here are a few upcoming events to inspire you.

April 1st is National Walking Day, sponsored by the American Heart Association

Team up and support the American Cancer Society’s Relay for Life or Make Strides Against Breast Cancer.

Walk to support the American Lung Association by joining the Lung Force Walk or the vertical road race, climbing stairs with friends to support the Fight for Air Climb.

Does someone you know have arthritis? Walk to support the Arthritis Foundation and its mission to find a cure.

Step Out and Walk to Stop Diabetes or cycle with the Tour de Cure sponsored by the American Diabetes Association.

Post your favorite walks, runs or cycling fundraisers on our Facebook or LinkedIn Group. Together, let’s continue to improve the lives of our families, neighbors and friends.

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

BOOK REVIEW: The Heart of the Hereafter, Love Stories from the End of Life

by Janet Simpson Benvenuti

The Heart of the HereafterEach month I read dozens of books, articles and research reports about aging and healthcare, looking for tidbits of information that I can share with you, knowledge that will make your family life easier, healthier, more joyful. After 25 years in healthcare, it’s rare that I find a book that makes me pause and reconsider how we care for the dying. The Heart of the Hereafter, Love Stories from the End of Life, is one of those books.

Author Marcia Brennan, Ph.D., is a professor of Art History and Religious Studies at Rice University in Houston, Texas. She also is the Artist In Residence in palliative medicine at the renowned M.D. Anderson Cancer Center. Curious about her role, I anticipated that her book would describe anecdotally how art therapy can help a patient cope with their cancer diagnosis. Far from that, Dr. Brennan becomes our guide to life’s greatest transition – death – using art as the language to describe what words cannot.

Dr. Brennan briefly provides context about historical guides to the art of dying called the ars morendi, small printed books widely used in the 14th century to help people understand the dying process and acknowledge the moment between living and death, when an individual is suspended between worlds. “Sometimes when I visit people at the end of life,” she writes, “I get the sense that they are inhabiting multiple worlds at once…their physical appearance changes and they become extremely beautiful.” This state of grace, a moment of sustained peace and comfort, a convergence of the physical and spiritual, is captured through her stories about 10 patients, including a child, who are dying.

In “The Heart,” Dr. Brennan brilliantly demonstrates how she creates a complete summation of each patient’s life in a single poem, words that are transformed by a visual artist into a charcoal drawing. She places their reflection in the context of her deep knowledge about religion and art, centering each story around the different types of love that influence and transform a person’s life. The result is breathtaking, especially as each patient acknowledges the accuracy of her work, comforted by her understanding and a sense of accompaniment when facing the transition between worlds.

The news today is full of stories about how to navigate the last years of life. Housing choices, hospice care, insurance coverage and legal plans are mundane but necessary decisions that distract families from what truly matters: being present with loved ones in the last months and moments of their lives. Dr. Brennan, a stranger to the patients she meets, reminds us that our role is to listen and affirm, to remain open to whatever arises, to acknowledge that “the end of life is all about life itself and the many different types of love that we experience as human beings.” This book is a gift to us, one to re-read each time someone in your life approaches the end of their own.

HIGHLY RECOMMENDED. Click this link to purchase The Heart of the Hereafter: Love Stories from the End of Life

c2015 Circle of Life Partners, LLC. All rights reserved.

Valentine’s Day: A Gift of Love

valentine's day cardby Janet Simpson Benvenuti

Our mission at Circle of Life Partners includes supporting the leaders of non-profit organizations that improve the health and well-being of older people and their families. On Valentine’s Day, in addition to buying cards and gifts for your loved ones, consider making a donation of time or money in their honor.

Below are links to some of the organizations we support.

1. Consider donating to a non-profit organization that supports research to cure the illnesses that afflict family members. Most families have someone living with heart disease or cancer, respiratory illnesses, arthritis or diabetes.

2. Because half of the caregiving dollars in America are spent supporting someone living with cognitive impairment, consider a donation to The Cure Alzheimer’s Fund or the Alzheimer’s Association. Other neurological illnesses such as Parkinson’s, ALS and MS also consume caregiving resources and benefit from our generosity.

3. Mental illness afflicts millions of Americans and NAMI, the National Alliance on Mental Illness is among the organizations that provide ongoing support and guidance to families.

4. Support artistic programs that focus on seniors such as ARTZ, Dance for PD, or Alive Inside with their plans to provide ipods and music to all living in nursing homes. Communities of writers such as Grub Street offer memoir writing workshops for older citizens while the National Center for Creative Aging provides training to encourage the widespread adoption of arts programs in senior communities.

5. Organizations with long-histories of supporting elders such as JF&CS and local hospitals, Councils on Aging, and food programs are always appreciative of donations of time and money.

I hope you’ll join us and share your love this Valentine’s Day beyond your immediate family. Post your favorite organizations below or on our Facebook or LinkedIn Group so we may promote their work as well. Collectively, we can have a significant impact on those who make it easier for us to celebrate the lives of those we love.

c 2015 Circle of Life Partners, LLC. All rights reserved.

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

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

Kathleen McQuiggan, 85 Broads Boston Chapter Co-President

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