Advice from an Experienced Family Caregiver

by Janet Simpson Benvenuti

Recently, I spoke with Elizabeth Barge, Norfolk, VA, to glean her insights about caring for aging parents. Elizabeth has spent the last five years supporting the needs of five elders – her parents, step-father and in-laws – in a family of nine siblings in a blended family of adults, a situation that would overwhelm most of us.

Here are her five insights.

First, focus on doing THE NEXT RIGHT THING. This will keep you from being overwhelmed; doing the next right thing will always result in forward progress.

Second, start laying the foundation BEFORE you have to act on it. For example, she called and asked the director of the assisted living facility where her parents were living if she needed to start looking for Memory Care. The director answered an emphatic YES, so she started looking for Memory Care centers close to her home in May. When her parents needed to move from the assisted living facility in September, she was ready.

Third, be conciliatory toward siblings and step-siblings. Sometimes they just want to know someone heard and maybe considered their point of view.

Fourth, accept that you can only work with what you have, therefore NO GUILT. If parents are too private about their affairs and not willing to allow adult children in as confidants, then when the mind goes, said adult children can only do the best they can with the information they DO have. When you do the best you can with what you have, there is NO GUILT.

Finally, the opinion of the guy/gal who does the hands on care for parents gets the MOST weight. Period. In her case, the other eight siblings and the spouses accepted that and thanked her at her step-father’s funeral for taking such good care of him. “In baseball vernacular,” she said, “I was the closer.”

Elizabeth is what I often call the ‘designated child’, the one who does most of the hands-on care for parents. If you’re that adult child in your family, remember that you’re not alone. I hope that you find Elizabeth’s words of wisdom helpful, that you focus on the next thing, without guilt, and that, in the end, your relationships with your family, spouses, partners and siblings deepen knowing that you did the best you could.

Thank you, Elizabeth, for sharing your insights with us.

Where do I find help for Aging Parents?

by Janet Simpson Benvenuti

The scenarios are all too common. A worried daughter lives in Chicago; her aging parents reside in Florida. A son works on the west coast while his widowed mom lives in Virginia. How do adult children find support for their aging parents when they need assistance? Many families elect to find a local professional care manager to help them and their parents navigate the elder care system.

How do you find a competent professional care manager? In five simple steps.

Step 1. Check with your employee benefits group to see if your Employee Assistance program provides help from professional care managers.

Step 2. Get names from the professionals in your parents’ lives. Specifically, ask their physician, attorney and financial advisor for names of local care managers. For example, many elder law attorneys have relationships with professional care managers.

Step 3. Reach out to your parents’ local Council on Aging. Speak with the director or the nurse or social worker on staff. Ask them to recommend a local professional care manager.

Step 4. Search for professionals using one of three national organizations: the Aging Life Care Association, the National Association of Healthcare Advocacy Consultants and the Alliance of Professional Health Advocates.

Step 5. Interview prospective care managers. Email info@colpartners.com for a copy of our interview guide.

The chemistry between your parents and the person whom you’ve entrusted to support them is key to a successful journey together.

Finding the right care manager can take time, but the benefit is having a professional who can provide care advice and information about available community resources over the duration of time your parents need support.

Post any thoughts or questions below.

Senior Housing: Who Advocates for the Residents?

by Janet Simpson BenvenutiSeniors Laughing

74 million Baby Boomers are entering Elderhood and they won’t Age Quietly. While most will age in place, some will transition to Assisted Living or Continuing Care Retirement Communities (CCRCs). The latter require a significant financial investment upfront with care services provided later in a resident’s aging process. Concerned about the financial stability of these entities and the absence of regulations, one advocacy group, the National Continuing Care Residents’ Association has formed and is gaining momentum. With affiliates in nine states and more joining the network, their mission is to assure that “their communities are well-managed and properly regulated.” If your parents or grandparents are in a CCRC, have them check out this organization. Yes, indeed. The Boomers are Coming!

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.

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.

Home Care, Adult Day Health and Supportive Living

sanborn placeby Janet Simpson Benvenuti

Each month I visit assisted living and continuous care retirement communities to learn more about housing options for seniors. While most are well-managed, beautifully-appointed communities replete with book clubs and outings, dining rooms and transportation services, I remain uncomfortable that these communities are financially out-of-reach for the majority of moderate-income families. Last week I visited Reading, Massachusetts, population 24,747, to meet Jacqueline Carson, executive director of Sanborn Place, an integrated care solution for lower income seniors and adults with disabilities that includes home care, adult day services, and a continuous care housing option. Recently, Sanborn Place has received national attention and will be featured in Dr. Atul Gawande’s next book on elder care and end of life.

Here are the three programs Jacqui supervises:

Sanborn Home Care provides home care services in short increments, if necessary, working in partnership with the local Visiting Nurses Association, the VNA of Middlesex East.

Sanborn Day is an adult day health center with capacity for 75 seniors or younger people with disabilities. Visually resembling the lobby of an upscale hotel, the center provides breakfast and lunch, exercise classes in partnership with the local YMCA, physical therapy, medication supervision, counseling for caregivers, and activities including a pool table, crafts, and computer games such as the Dakim Brain Fitness Program. My visit interrupted a game of charades with a roomful of joyful elders and it included an unanticipated discussion about the Massachusetts governor’s race with a well-informed senior.

Sanborn Place is a non-profit, federally funded facility for seniors whose incomes do not exceed $33,050 (single) or $37,800 (couple). Upon arrival, I was greeted by four older women sitting in the lobby who proudly revealed their ages: 93, 95, 87 and 83 as they awaited their friend, age 102, who was taking a nap. The community has 73 units, half assigned to seniors who require daily support, others for those needing weekly support or none at all. Each apartment includes a living room and kitchen with a private bath and bedroom not unlike those in high-end communities. Seniors remain in their apartment until the end of their lives.

Payment for these services comes from many sources including Medicare (for skilled nursing care and PT or OT services), HUD, the Veterans Benefits, and Mass Health.

While many communities offer similar programs, what’s unique is the integrated way that care is provided and the number of private citizens involved. Jacqui oversees the delivery of these three programs supported by a stellar team of professionals and individuals like brothers Gregg and Bruce Johnson, who created DKJ Foundation in honor of their father to raise funds for Sanborn Place. You may learn more about their foundation here.

As the tsunami of boomers age, many without enough family members to fill the role of caregiver, I remain encouraged and inspired by people like Jacqui, Bruce and Gregg who take responsibility for the well-being of all of the older citizens in their town and do so with a passionate commitment to help them remain a vibrant part of the community they’ve always called home.

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

Aging Parents: Navigating the Journey Seminars

Our mission at Circle of Life Partners is to provide the knowledge families need to navigate the aging journey with elders successfully. This month, I’m taking our program to executives at the Harvard Business School reunion, families in the town of Wellesley, MA and attorneys at the Women’s Bar Association. See below for the incredible people who will join me to share their experience and expertise with others.

On the Road Again…

Harvard Business School (not a public event)

Saturday, October 13th, 2:30-3:45 p.m. Aldrich 107

Executives attending their 25th through 45th reunions will participate in a discussion about the key decisions and resources available to navigate the aging journey with older loved ones. The panelists will include Rich Redelfs, General Partner, Foundation Capital LLC,; Jane Beule, Owner of Griffin Black, Inc., a financial advisory practice; and Ken Bacon, retired EVP of Fannie Mae’s $193 billion Multifamily Mortgage Business and Advisor to Stanford’s Center on Longevity. Follow me on twitter at @colpartners as I moderate the panel.

The following week, I’ll be moderating a public forum in Wellesley, MA sponsored by Princeton Alumni of New England (PANE), the Wellesley Free Library and the Wellesley Council on Aging. This program continues my series of public events that bring together local resources and families. The profits from any copies of Don’t Give Up on Me! sold during that event will be donated to the Wellesley Council on Aging .

Wellesley Free Library – A Free Public Event – Click here for more information.

Wakelin Room, 530 Washington Street, Wellesley, MA.

Wednesday, October 17th 7:00p.m. to 9:00 p.m.

The theme for this free public event is “Caring for Our Parents and Ourselves.” The panel will include four speakers: Dianne Savastano, RN, MBA and founder of Healthassist who will share tips for navigating the health care system; Jim Reynolds, CEO of Caring Companion Home Care, who will help families understand how to select a home care agency; Dr. Anne McCaffrey, Chief Medical Officer of the Marino Center for Integrative Health and Debra Brothers-Klezmer, BSN, who will share strategies for reducing the stress that often accompanies family caregiving.

If you’re in the area, stop by for what’s sure to be an informative and engaging conversation. No registration is required.

Dianne Savastano will join me on the road again the following week as we provide another program for the Women’s Bar Association of Massachusetts. Appropriately, this event includes panelists who will share cases that demonstrate how legal advice and financial planning can smooth the aging journey.

Women’s Bar Association – Click here to register for the event.

200 Clarendon Street, 19th floor, Boston, MA

Thursday, October 25, 2012  5:30 p.m. to 7:30 p.m.

Joining Dianne and me on the podium will be Kristin Shirahama, Esq., Partner at Rosenberg, Freedman, and Goldstein, who will describe a complex case involving disability and how she helped that family get the financial resources needed to care for that older loved one well through their later years. Martha Payne, a financial planner for Baystate Financial Services will provide guidance for how to prepare financially for the aging journey with one’s parents.

At Circle of Life, we are committed to your health and well-being. Construction of our new website is underway and until it is ready, we will continue to keep you informed about upcoming events through this blog. If you want to be on our  mailing list for a personal invitation, just post a reply.

© Circle of Life Partners

 

 

 

 

 

 

Creative Aging: Get Used to It

By Sally Abrahms

Confession: I wasn’t dying to go to the brunch at my mother-in-law’s assisted living place out of town today. The musicians who play these gigs could easily be residents.

The visit is particularly tough for me because my 91-year-old mother died just a month ago. In the lobby is my mother-in-law (happy 92nd next week) is wheeling my mother’s cobalt blue walker (the Range Rover of geriatric gear), which I gave her, along with lots of my mother’s jewelry.

She looks fabulous in the chunky, alabaster glass necklace and matching earrings. Compliments are flowing about her gems from fellow residents and their families. I am thrilled I have given them to her, and I know my mother would have been pleased, too, but it feels weird, too. I’m feeling a bit blue.

But then, at dessert this woman Roz I have never met comes up and asks me if I am my mother-in-law! Hmmm. Then she asks me if I’d like to hear her play the piano. Why not, I think? I can do this!! So I follow her into the other room.

She can barely see and has just confused me with a nonagenerian, so I’m hardly expecting mad piano skills. The woman is amazing! She plays vivaciously from memory and belts out the lyrics to “If I Were a Rich Man,” and then some songs from her era I haven’t heard.

A 14-month-old great, great granddaughter of another resident is carried into the room and starts to dance. The pianist is delighted with her audience—the baby, her mother, and I—all folks who have just met Roz. I clap and the baby is twirled. After one song, Roz shows infant a brightly colored velcro toy on her walker; the little girl is fascinated.

After six consecutive songs, Roz rises and takes her walker. I tell her my name and she says, “Sorry, I can’t remember names. It’s so embarrassing living here for four years with the same people and I have no idea what their names are.”

I tell her, “You may not remember names, but they can’t play the piano like you.” She thinks about it and says, “Yes, but wouldn’t you be embarrassed if you couldn’t remember?”

What I will remember from today is not to underestimate people, regardless of age.

But then, I’m writing a story that is not letting me forget it.

Once my piece is published in November, I’ll link to it and explain more. Here’s the teaser: a concept called Creative Aging that is gaining fans nationwide. You heard it here first! The premise is that creative expression is essential for older people and that arts programs can yield dramatic physical and emotional benefits for elders–fewer falls, more mobility, less depression, more social engagement, better sense of self. You’ll have to wait for the substantive stuff.

In the meantime, check out the National Center for Creative Aging here to learn more, find out if these programs are offered for your parents or grandparents, or how you can be part of one.

Just one last note: thanks, Roz!

Reprinted with permission. Follow Sally Abrahms at http://boomerwriter.com.

In the Sandwich? Seven Favorite Sources of Information

by Jan Simpson

To keep informed, I read, tweet, meet experts, attend conferences, and talk with people who provide medical, legal, financial, housing, and home care services to families. I also spend time with entrepreneurs who are launching businesses to help seniors age in place safely.  Along the way, I’ve accumulated a list of favorite information sources.  Here are seven.

#1 Favorite Blog: The New Old Age: Caring and Coping (The York Times) provides timely stories and electronic links to resources. If your family is actively caring for an older loved one, this site is worth bookmarking. Click here.

#2 Favorite Physician Leader #1: Dr. Atul Gawande whom I call the Justin Bieber of medicine, is a surgeon, writer, and an advocate for change in the way hospitals deliver care. He is considered a thought-leader, someone to follow if you have an interest in peeking behind the quality problems in hospitals. Caution: you may never leave a loved one alone to navigate hospital care again. Read his latest article here.

#3 Favorite Physician Leader #2: Dr. Servan-Schreiber turned his own experience with brain cancer into a campaign to help others prevent cancer or a relapse. If you have an hour, listen to his story here. Dr. Servan-Schreiber has teamed up with the MD Anderson Cancer Center in Houston, Texas to finance scientific studies that will evaluate the benefits of specific foods and activities such as yoga on cancer care. Neither the government nor the pharmaceutical companies will fund this research, so he is asking for donations from individuals and foundations. Watch this short video to learn more.

#4 Favorite Foods/Spices for Healthy Aging: Blueberries, Celery, Parsley, Turmeric and more. Click here for a full list.

#5 Favorite Book about Health Care: Overtreated by Shannon Brownlee explains how Americans are being subjected to unnecessary medicine in many parts of the country.  After you read Overtreated, reflect on the advice of gerontologist Dr. McCullough (author of My Mother Your Mother)—embrace “slow medicine”— and you’ll know how to support older loved ones.

#6 Favorite Radio Network: I have found podcasts on the Aging Smart Radio Network helpful. Here is one about long-term care insurance. Click here.

#7 Favorite Way to Find Information: Twitter

If you’re not on twitter, check it out. It’s simple to use and easy to find tips, resources, news, and people on a myriad of topics. Or, just follow me at @colpartners and I’ll do the research for you.

Do you have any favorite information sources?

©Circle of Life Partners™