Mother to Mother, On Mother’s Day

by Janet Simpson Benvenuti

I am a mother and a motherless child, an aunt to 19, three of whom lost their mother last year. Until my own mother passed away, I never associated Mother’s Day with loss but the holiday raises mixed emotions of joy, sadness, gratitude, and love.

Mothering is defined by Webster as the act of “bringing up a child with care and affection,” but that definition doesn’t begin to capture the ethos of a mother: one who cares for her child, her friend’s child and the community around them. Those of us raised by loving mothers or aunts, older sisters or grandmothers know the quiet touch and backbone of steel that mothering requires. We celebrate each other’s joys, we mourn each other’s losses, we comfort those in need.

Recently I read “From Mother to Mother, Having a Child with Substance Abuse Issues,” a poignant essay in which the author, Cathy Miles, conveys how her daughter’s addiction changed her personal celebration of Mother’s Day. What caught my attention was the phrase “from Mother to Mother,” the code all mothers use to signal honesty, empathy, awareness and action. Cathy is a mother with an ill child who openly shares her fears and depression, dreams lost and life changed; one who shares her story so others may not feel alone in their own child’s journey with addiction. Cathy is the mother of a daughter but she is mothering us as well.

On this Mother’s Day, it’s important to remember that you are not alone. Not alone with a disabled child, an ailing parent, or an aging body. Not alone as a teenage mother, a widowed elder or a mentally ill adult. As long as your world is filled with women and men who embrace mothering, they will notice and support your needs.

A few weeks ago a neighbor and the mother of four visited a homeless shelter. Through a quick email to a gaggle of friends she solicited 850 pair of new underwear without fanfare or fuss, overwhelming the shelter with her generosity and waiving off the gift, as mothers do. Linger a moment on her request. Underwear? Only a mother would think about new underwear and the importance of that gift to a homeless person, a gesture of kindness and a reminder of their value as a human being.

Now, just for a minute, think about the outcome if that email went to a gaggle of men.

Happy Mother’s Day to the mothers among us and to all who enjoy mothering.

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

MALA – A Caregivers’ Journey

by Janet Simpson Benvenuti

“You’re making mistakes all the time, you’re failing all the time. You weren’t taught how to do it — no one trained you. Our culture doesn’t really help us do it. We feel alone. We’re not alone.”

How many of us have said these words to our friends as we struggled to support our aging parents? How many more of us have felt this way, but remained silent about our concerns? If you’re in Boston this month, you may want to attend the performance of MALA at the Emerson/Paramount Center. Written and performed by nationally acclaimed playwright Melinda Lopez, this one-woman show brings to life the world of the adult child struggling to support her dying parents. Brilliantly irreverent, Melinda captures the universal struggle of family caregivers coping with her parents’ needs without losing her compassion or her sanity.

Our thanks to our colleague Dianne Savastano, RN, MBA, founder of HealthAssist, for bringing this play to our attention. If you subscribe to Dianne’s newsletter here, use HealthAssist10 to save $10 on the ticket price. Here’s the link to purchase tickets.

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

Why Do Men Die First?

92016-why-men-die-first
by Janet Simpson Benvenuti

Women outlive men by six years. Heart disease in some men begins at 35. Like you, I never questioned why until I read Why Men Die First by Dr. Marianne Legato. Dr. Legato, professor of clinical medicine at Columbia University, has been studying the differences in health between the sexes for decades. Her research found several ways to help men avoid premature death, summarized by Don Fernandez at WebMD.

Here are five suggestions to lengthen the male lifespan.

1. Speak candidly with a physician. Although men are inherently more vulnerable than women genetically, their cultural conditioning encourages them to take risks, deny pain and show no weakness. Those social pressures make them reluctant to seek medical help and speak frankly to their physicians. Mothers, spouses, sisters and friends play an important role in helping men reach out for help before a medical condition worsens.

2. Men are biologically predisposed to infection. Boost the immune system with proper diet, exercise and sleep. Avoid infections by using condoms and keep immunizations, including tetanus shots, up to date.

3. Treat depression. Like in women, depression is a risk factor for heart disease and stroke, and older men are more likely than women to become suicidal and take their own lives.

4. Watch young adolescent males whose lifestyle make them vulnerable to injury or death.

5. Assess the risk for heart disease and take steps to lower risk factors. Some men, especially those in stressful jobs like firefighters and police officers, show evidence of heart disease as young as 35.

For more insights and guidance, listen to this 30-minute video posted by Second Opinion, an informative discussion about why men age more poorly than women.

Together, let’s help our sons and spouses, brothers and nephews lengthen their lifespan.

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

Are You One of the Village People?

by Janet Simpson Benvenuti

Next Thursday, June 30th, I’m heading to Cape Cod to join the Village People. I won’t be donning my cowboy boots or singing “Y-M-C-A” but I will be leading a fun, community-wide conversation about aging and aging in place with Neighborhood Falmouth, one of the first virtual retirement villages in the United States. Joining our conversation will be experts in law, financial planning, home care and senior housing along with working daughters juggling aging parents and teenage children, Baby Boomers planning for their own longevity, and a random cowboy or two. If you’re heading to Cape Cod for the fourth of July, especially if you’ll be spending time with your older relatives, stop by and join the conversation. Learn why fewer Baby Boomers will be using senior housing. No singing skills required.

Here’s where we’ll be on Thursday, June 30, 2016, 7pm-8:30pm: Unitarian Universalist Fellowship of Falmouth, Sandwich Road, Falmouth.

c2016 Circle of Life Partners, LLC. All rights reserved.

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: 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.

ARTZ: Artists for Alzheimer’s

by Jan Simpson

Recently I attended a forum in Boston where I met Dr. John Zeisel and Sean Caulfield, co-founders of ARTZ, an organization that hosts community events for people living with memory loss and their caregivers. Drawing on the support of artists and cultural institutions such as the Louvre in Paris, the Museum of Modern Art in New York City, the National Gallery of Australia, the Big Apple Circus and the Tribeca Film Institute, ARTZ has enable thousands of people living with Alzheimer’s and related dementias to have access to arts and culture.

Standing before an art exhibit, John spoke passionately about how art experiences can significantly enhance the lives of those living with dementia. The evidence surrounded him as the room was filled with paintings and photography created by people living with Alzheimer’s disease. I could feel the joy they all must have felt as they created their paintings, many perhaps beyond the point where they could express themselves with words. While some paintings were detailed and colorful, my eyes were drawn to one that appeared rather simplistic, a Star of David and a rectangle with colored bars. “That person,” John said, “could no longer speak but he was telling us, ‘I’m still here.'”  When his family saw the painting, they began to cry. Their father was a Holocaust survivor and his drawing captured his memory of that experience. “Alzheimer’s doesn’t take away memory, your memories are all in there. It’s as if you put the memories in the glove compartment and you lost the key; the art unlocks it,” said John.

ARTZ does more than encourage artistic expression.  By creating interactive, educational programs in partnership with museums and theaters, it allows elders to enjoy an outing that is stimulating and therapeutic. Art experiences have been shown to significantly reduce psycho-behavioral symptoms often associated with dementia, such as anxiety, aggression and agitation, and to optimize remaining capacities.

On December 15th, I’ll be volunteering in Boston at “Meet Me at the Coolidge…and Make Memories” an interactive film program for people with memory loss and their partners. The film event was designed specifically to encourage audience discussion and reminiscence. The program will show short clips from classic films from the 1930’s to the 1960’s. Tickets are free. If you have a loved one living with dementia, consider bringing them to the program.  Click here to learn more about ARTZ and all of the programs it sponsors.  If someone you love is experiencing memory loss, consider adding art to his or her activities.

Do you have stories to share about the arts and your older loved ones?

©Circle of Life Partners™

The Silent Majority: Adult Children as Caregivers

by Jan Simpson

I met for lunch with a woman who drove her car through her garage door, distraught over a telephone call from her elderly father. I received an email from another: her 85-year old uncle is suicidal. One friend visits a local nursing home daily before work and another lives with the guilt that a decision he made may have inadvertently led to his father’s weakened medical condition. These are the lives of your colleagues at work, juggling the demands of work and family, who silently have assumed a new responsibility: the care of their aging parents.

There is no escaping this stage in life. Parents age. They may live with diabetes or arthritis, cancer or heart disease.  They may have a stroke or break a hip. Or they may simply reach the age of 85 or 90 or 94 when they cannot live alone. You may be the one who needs to help them, the family member who coordinates their care, who solicits help from siblings and others, who assumes, over time, the role of the caregiver. The good news is that you’re not alone. Today, more than 50 million Americans are supporting an older loved one. The average age of an adult caregiver is 50-54. You may face tuition bills and assisted living choices, teenage drivers and visiting nurses, midnight calls from an anxious elderly parent or a teenage daughter asking to stay out late. This is what they didn’t discuss in those parenting classes you took when your children were young. This is what you won’t know about your co-worker, who looks worn at the morning meeting, dark circles under his eyes. Or your neighbor, who waves hello and smiles, but seems distant and strained.

How do you ask for help when you aren’t sure what to do for your aging parent? How do you offer a neighbor or a co-worker help without seeming intrusive on his or her personal life?

A few weeks ago, Ned Rimer, founder of the Chronic Care Community Corps, was on public radio in Boston. I met Ned two years ago when he was starting to research how to best help families who support an elderly loved one. Ned interviewed physicians and caregivers, elders and health care professionals. From those interviews he developed an interactive seminar series that he piloted last October. I was fortunate to be among the seminar participants. Through role playing and readings, case studies and candid conversations, Ned and his colleague Dr. Loring Conant, facilitated a deeper knowledge about how family members, friends, and co-workers can best support a family caregiver. I encourage you to listen to Ned’s interview on WBUR here and read more about his work here. Consider hosting a seminar at your work, your place of worship, or a neighborhood group.(A reminder: I do not have a financial arrangement with Ned Rimer or the Center for Applied Ethics.)

In twenty years, there will be 70 million Americans over the age of 65  living in our communities. We can all benefit by learning how to offer meaningful support to our aging parents, neighbors and work colleagues. And, in a few decades, our children will be the ones needing that support.

Are you aware of other organizations that provide support to family caregivers?

©Circle of Life Partners™