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.

 

 

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.

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.

 

 

 

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.

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.

Palliative and End-of-Life Care

Physicians and Nursesby Jan Simpson Benvenuti

Last week I had the privilege of being the keynote speaker at the Washington End of Life Consensus Coalition annual conference. The room was filled with palliative care and hospice specialists – physicians and social workers, nurses and chaplains – each of whom cares for patients living with life-threatening illnesses. I was invited to offer the family caregiver’s perspective, to convey the lessons I learned while supporting my parents through the end of their lives. Because I have spent more than 25 years in health care and we cared for my father and mother living with cancer and Alzheimer’s disease, respectively, at home, my talks often create a bridge between the way the medical system intervenes with patients and the reality of their home lives. I had planned to deliver my usual speech about navigating the aging journey but for this audience, I had another mission: I wanted these clinicians to feel the experience of being the family caregiver, bouncing from specialist to specialist,challenged to make medical decisions regarding chemotherapy and surgery, feeding tubes and ventilation, without the benefit of consistent medical counsel. For when my parents were ill, palliative care specialists were not prevalent in hospital or medical settings.

What is palliative care? It is a team approach for caring for a seriously ill patient that focuses on alleviating symptoms such as pain, nausea and fatigue while helping patients and their families understand treatment choices and options. You can learn more here. Nurses and physicians, pharmacists and others trained in palliative care practices are a useful resource for family members struggling to understand the arc of an illness and how to best care for their loved one. This specialty is relatively new, but one that you should inquire about as your parents and other loved ones navigate the later stages of their aging journey.

I began my speech by introducing the clinicians to my family and I did my usual gig with good humor, highlighting the legal, financial, familial and housing decisions that challenge families as their parents age. Then I circled back to the medical system and my personal story. For the first time, in nearly five years of public speaking, I decided to share my parents’ end of life experiences publicly, knowing that this audience deals with life and death decisions daily. I read two pages from Chapter 20 of my book, Don’t Give Up on Me!, conveying a conversation I had with a physician regarding how Alzheimer’s disease advances and the decisions I might have to make on my mother’s behalf. I noted that the conversation took place nearly three years before my mother passed away and reminded them that preparation for the end of life doesn’t begin when someone is literally at the end. I proceeded to share anecdotes from the time of that conversation through the end of her life and I watched as the room grew increasingly more quiet and still. I tempered the anecdotes with humor, creating vivid imagery, juxtaposing preparation for a Valentines Day party for 30 six-year olds with a testy telephone conversation with my mother’s physician regarding potential surgery. Slowly I brought them to the end of her life and her last ambulance ride to the hospital with the EMTs who honored her do-not-recussitate order only to encounter the emergency room physician who did not, who placed my mother, against her wishes, on a ventilator. I stopped my storytelling there and in the brief silence that followed, the audience responded in a way that I did not anticipate.

We know that clinicians are trained to separate their emotions from their clinical judgment, allowing them to work daily surrounded by disease, pain, sorrow and death. Without that cognitive ability to compartmentalize their feelings, to objectify their patients somewhat, they would be unable to function optimally. Yet, at the end of my story, these highly trained clinicians did something I did not expect. They cried.

Over the years I’ve developed great affection for health care professionals. Admittedly, a few are callous and inattentive, but the majority work long hours under difficult circumstances to provide the best possible care for their patients. Helping families understand how to interact with the medical system, to fill in knowledge gaps about insurance and disease, advance directives and health maintenance is the reason I founded Circle of Life Partners. Most of the time, I speak before families and professionals outside the healthcare system. But sometimes, when the medical community invites me to join them, I use my experience and yours to elevate the voice and concerns of families, to showcase the gaps in care that only they can close.

Following my speech, a geriatrician gave me the greatest compliment when he said, “You reminded all of us that when a patient receives a diagnosis of cancer or Alzheimer’s or any life-threatening illness, the entire family receives the same diagnosis.” That’s so true.

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