An End-of-Life Conversation at 29


by Janet Simpson Benvenuti

2020 was supposed to be a banner year. My son was getting married at the end of May; the logistics of planning a destination wedding in Sedona, Arizona had been an all-consuming adventure for his fiance and their friends. As the mother of the groom, I had little to do, and yet he found ways for just the two of us to share this journey together. First, came a call 18 months ago and two trips in secret to our favorite jewelers to pick out a diamond so he could surprise her with a proposal and an engagement party at their favorite restaurant. More recently, he arranged a meetup to select material for the custom suit in which he’ll be married. By February, the planning was finished, with celebrations ahead in three states with his large extended family.

Then, the coronavirus struck. Plans were cancelled, celebrations postponed and, one Sunday, I found myself having a conversation with him that would have been unthinkable a few months ago.

The topic? My end-of-life game plan.

Five years ago, my husband and I updated our estate plan and, more recently, we shifted the responsibilities for handling our finances and health care decisions, if we both are incapacitated, to our two children. It seemed the right time to make the change; they’re in their twenties and we’re about 25-35 years away from our statistical expiration dates.

As viral infections spread, I allowed myself to consider what would happen if both my husband and I were ill, intubated in the hospital, unable to communicate our healthcare wishes or pay our bills. I then did three things:

1. Find Health Care Proxy, HIPAA Authorization and Durable Power of Attorney. I printed copies of our medical and financial powers of attorney and inserted them into a plastic sleeve, like one finds at Staples. I transferred copies of those documents onto a flash drive.
2. Provide Explicit Guidance for the Healthcare Agent and Financial Power of Attorney. I wrote a one page cover letter with specific instructions on how to manage our healthcare issues that included the cell numbers of physicians in the family and contacts at the hospital where we’ll likely be situated. I included how to pay our bills along with the names and contact information for our financial advisor, tax accountant and attorney, and the password to access my computer.
3. Cue up Relevant Advisors to Handle the Situation. I called our financial advisor (who knows all about our financial matters) and gave him our children’s emails and cell information along with specific instructions (in writing) to proactively reach out to them should we become ill.

Then, I invited my son and his fiance over for dinner. Over dessert and coffee, I pulled out a manila file folder. “Although this is unlikely to happen,” I began, I handed him the folder that contained the instructions, our healthy care proxies, HIPAA authorization forms and financial powers of attorney. His fiance sat silently at the table as I talked, later acknowledging that she recently had had a similar conversation with her parents.

After dinner, as my son prepared to leave, manila folder and flash drive in hand, we stood alone in the garage waiting for his dog to run her final laps before their car ride home. “Thanks for having our backs,” I said quietly, out of earshot of his father and fiance. “No problem,” he replied. I nodded and continued, “By the way, there’s a second plastic sleeve in that folder that holds your healthcare proxy. If you go to the hospital, just grab it. I’m your healthcare agent and the admitting physicians will want to see that. I’ll handle your bills, too. Don’t worry.” He nodded silently and reached out to gently rub my back.

The unthinkable is not that his father or I might become infected with the coronavirus and die, although we have no known underlying health conditions that put us at risk. The unthinkable is that he might, too, and in a year that was supposed to be one of joy and a new beginning, this was the last conversation I expected to be having with him.

We’re in the midst of a pandemic, not the flu. Don’t live in denial. Play the “what if” scenarios and tell your family what they need to know.

Since that evening, I’ve slept well, knowing that I’ve done all I can to anticipate the future, whatever may happen. My family and I can now just focus on helping others navigate this challenging time and get back to planning a wedding.

Keep well.

Circle of Life Partners, LLC. All rights reserved.

If You Are Hospitalized During the State of Emergency

by Janet Simpson Benvenuti

The COVID-19 virus has upended all of our lives, none more so than infected family members who need hospitalization. Recently, I asked attorney Alexis Levitt if I could circulate her advice to clients about being hospitalized during this state of emergency. As you know, visitors are not allowed to accompany patients into hospital settings.

Here are her suggestions in how to prepare for that possibility. I’ve added a couple of notations in italics and wrote a separate post about how I prepared my family. As we know, it’s not sufficient to follow this advice; we also need to talk with our family, especially our healthcare agent and financial power of attorney.

From Attorney Levitt,

I hope you are all staying home (unless you are an essential worker). I want to share some important points to keep in mind if you are hospitalized during the state of emergency. These apply whether you are hospitalized for COVID-19 specifically, or for any other reason.

1. Keep your Health Care Proxy, HIPAA Statement, and Medication List at your fingertips.

(a) If you are a client of ours, then we enrolled you in DocuBank. Take five minutes now to update your medication list. (Really. Five minutes. I updated mine recently, it was very easy.) If you do not use DocuBank, print out hard copies and put them into a plastic sleeve or envelope.

(b) Keep copies on your phone. You can save the documents to your Google Drive, you can simply keep them attached to an email, whatever you like, so long as they are accessible to you on your phone.

(c) Keep copies on the back of your front door or on your refrigerator. Many first responders will look in these places for emergency medical papers.

2. Advocate to be coded as “inpatient” rather than “under observation.” If you are in the hospital and then transferred to a rehab, how you were coded at the hospital will make a big difference in payment source for the rehab stay.

3. If you are transferred to rehab and told that you will be paying privately, call us (your attorney). Under the State of Emergency, some of the usual coverage triggers for payment for rehab have changed. Nursing home billing offices could be – quite understandably – overwhelmed and perhaps not updated on the temporary changes. We can help.

4. Call us (your attorney) if you need a guardianship or conservatorship. For anyone who has not signed a health care proxy or a power of attorney, the hospital (or rehab) may tell you that you need a guardian or conservator. This is a court proceeding handled by an attorney.

(a) It’s possible that the hospital or rehab attorney will handle the guardianship and/or conservatorship for you, for free. If that is the case, be sure to check in with them as to who they are naming to act as the guardian or conservator, and, if you are not happy with their choice, advocate for naming someone you prefer.

(b) If the hospital or rehab tells you that you need to find your own attorney (or if you are not comfortable using their attorney), then please call our office. This is something that we can handle for you.

Reprinted with permission.

Are you a Working Daughter?


by Janet Simpson Benvenuti

Recently I met for lunch with Liz O’Donnell to discuss her latest book entitled Working Daughter, A Guide to Caring for Your Aging Parents While Making a Living. Liz is a marketing executive who suddenly found herself caring for two parents who were diagnosed with terminal illnesses on the same day. Juggling the demands of a full time job and two young children, Liz turned her experience into a poignant story full of humor, encouragement and practical guidance. Intent to help the readers overcome “insomnia-induced, middle-of-the-night Google searches,” Liz weaves her personal story with clear advice that will help working daughters and sons navigate the practical challenges of supporting aging parents while acknowledging the emotional, and potentially negative, impact on relationships, health, and careers. Among the pages you’ll discover,
1. How to identify the warning signs that there is a problem;
2. Fifty things family caregivers can do to practice self care;
3. Strategies for setting boundaries & communicating with parents, siblings & spouses;
4. Senior living options and how to transition parents to a new home;
5. The Working Daughter Bill of Rights.

To better support women balancing eldercare and career, Liz founded WorkingDaughter.com and oversees a private Facebook group of women and men supporting their aging parents. Order the book and if you, or anyone you know, is juggling work and parents, invite them to join the Facebook group; it’s like being online with 2,500 non-judgmental sisters. You’ll laugh, cry, vent, and get advice on topics ranging from the best underwear for incontinence to how to find decent home care or assisted living communities. You may also enjoy the Working Daughter podcasts.

Author Virginia Morris sums up Working Daughter best. “Women might be able to shoulder both work and motherhood, but throw an elderly parent’s care into the mix, and these mighty women can collapse into a heap of wine, cheese dip, and tissues. Liz gives them guidance on how to accept their fates, manage the mess, and find some joy in the moment.”

Enjoy. And thanks, Liz, for enabling us all to learn from your experience.

Eldercare: How to Avoid Sibling Discord

by Janet Simpson Benvenuti

Recently I teamed up with geriatrician Dr. Leslie Kernisan to share how to minimize family conflicts that arise even in the closest of families when a parent or older relative becomes ill and needs support. Dr. Kernisan is a practicing geriatrician with an active interest in educating seniors and their adult children how to achieve Better Health While Aging.

Sibling conflicts arise from a lack of clarity about roles and responsibilities that change as a parent’s or older relative’s needs increase. Geographic distance, job demands, financial strain and even denial will elevate stress and tension. In this podcast, you’ll learn the key roles relatives play and the four actions that insure successful aging. Learn, too, how a quick sketch of a family tree helps identify and fill gaps in support long before assistance is needed.

Like you, I often listen to podcasts on walks or when commuting. I listened to our edited podcast on a rainy day while chopping vegetables to prepare beef barley soup. Here is the recipe and the podcast.

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

Campus Alert: You Forgot Something, Mom. The HIPAA Release

eos_yale_firstsession015by Jan Simpson Benvenuti

Whew. What a summer. Your son or daughter is now settled into their dorm, engaged with classes and ready for the year ahead. You’ve celebrated their high school graduation, savored their last summer before college, checked off the list of items for the dorm. You found those extra-long sheets, fresh towels, and a small fan; you met the roommates and unpacked the clothes; you lingered at the door, hesitant, nostalgic, wondering where the years went, praying that you’ve done enough, that the next four years will transform your child from a capable adolescent to a competent young adult.

You’re excited for them, but you’re worried, too. You follow the news. You combed through the Department of Education’s Campus Safety and Security website, noting the number of Criminal Offensives, Rapes, Robberies and Assaults reported on campus for the last three years. You know that freshman and sophomore girls are particularly at risk. You’re aware of the binge drinking statistics, and that the collective IQ of testosterone-laden adolescent males decreases in packs. You’ve heard that 20% of young adults, one in five, will experience mental health issues like anxiety or depression. You know these things, but you also know that you’ll be there for him or her, whatever transpires, just as you’ve supported them for 18 years. In fact, you’re making plans to revisit the campus soon.

But you forgot something. Your child is 18, and at 18 they become legally responsible for their own medical decisions. That’s right. Even their pediatrician, someone you’ve known for 18 years, can no longer disclose their medical information to you. It’s illegal to do so. So if your son is taken to the emergency room or your daughter seeks mental health counseling, the physicians and psychologists have no legal right to discuss their health with you. They may not even contact you.

Fortunately, the solution is a simple one. You don’t need to contact an attorney, just have your teen sign a HIPAA Authorization Form. Reply to this post or send an email to info@colpartners.com. We’ll send you a copy of the form with instructions. Bring it to campus. Have them sign it. Put a copy in University Health Center and keep a copy for yourself. Call this preventive medicine. Hopefully, the accident won’t happen, the call won’t come, they will navigate the college years without incident. But should they need your help, you’ll be able to quickly support them, just as you’ve always done.

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

Is your Teenager Turning 18? Protect Their Health

by Janet Simpson Benvenuti

Do you have a niece or nephew, child or grandchild turning 18 this year? Be sure to have them sign a HIPAA Authorization Form before leaving home for college. Many parents of college-aged students are surprised to learn that they can not access their teenager’s medical information without their explicit permission, a right to privacy embedded in HIPAA legislation. Some parents discover they’ve been denied access in the middle of a medical or mental health crisis, a situation easily avoided by having your teenager sign a permission slip called a HIPAA Authorization Form on their 18th birthday. This form, which takes only a minute to complete, does not require an attorney nor notarization.

Listen to my video and request your free copy of the form, with easy instructions, by simply replying to this blog post or emailing info@colpartners.com with HIPAA in the subject line. Make this task a priority, on top of your “to-do” list, ahead of finding the twin-extra long sheets for dorm beds.

Please share this message with friends and family who have teenagers. Don’t let them leave for college without signing this document. Here’s why from Consumer Reports.

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.

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.

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.