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.

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.

Sleepless in Boston: From Stress or Reading in Bed?

by Jan Simpson Benvenuti

Recently, several Circle of Life supporters joined me at a luncheon sponsored by the Women’s Health initiative at Brigham and Women’s Hospital where we learned about the gender differences in our natural sleep cycles.  At my table were women juggling careers and children, aging parents and teenagers, each challenged to maintain their own health and the health of their loved ones. We listened as Diane Patrick, the First Lady of Massachusetts, spoke eloquently about her own struggles with insomnia years ago, a symptom of depression that was successfully treated.

Women are two to three times more likely than men to suffer from insomnia and simple changes in bedtime routines can lead to a more restful night. Here are 12 simple steps to improve sleep (12 steps). I was aware of some of the recommendations, like establishing good bedtime routines and sleeping in a cool room. Yet having switched to reading from a tablet at bedtime instead of a hardcover or paperback book, I have unwittingly increased the likelihood of disrupted sleep.

Do you read from a tablet before bed?

© Circle of Life Partners

Nursing Homes, Assisted Living, & Retirement Communities: When an Elder Must Move

by Jan Simpson

Recently I got a call from a friend in California.  He told me that he and his sisters were worried about their 88- and 86-year-old parents who live on the East Coast.  Concerned about their ability to remain safely in their own home, this circumstance is a familiar one: his parents are approaching a tipping point where a housing change  is necessary.  How each family makes this decision is unique, but it’s useful to evaluate alternatives before a crisis forces a hasty change.

What are those housing alternatives? Some adult children have their ill or widowed parents move in with them. Today, more than 3.6 million parents live with their adult children, according to David Horgan and Shira Block, authors of When Your Parent Moves In: Every Adult Child’s Guide to Living with an Aging Parent. While the book gives strategies for creating a harmonious living arrangement, it also cautions the reader about jumping into this arrangement without first considering the long-term implications.  They offer the reader a “Moving In Quiz,” a sample of which is below.

Guilt: Using a scale of 1-Never, 2-Almost Never, 3-Sometimes, 4-Almost Always, and 5-Always, how often do the following apply?

___  Why am I the only one who steps up to the plate? If I don’t take care of Mom, no one will.

___   Dad refuses to go into an assisted-living facility or even let us send a home health aide to see him. What choice do I have?

___   My spouse doesn’t say it, but I know he/she expects me to take care of his/her mother. I don’t want to upset anyone, so I’ll just go along and try to make the best of it.

___   I can’t abandon my parent. I couldn’t live with myself if I did.

___   I know my mother thinks I don’t care about her. That’s not true, but she is always trying to make me feel bad.

According to the authors, if you score an average of three or higher, you may be walking into “a minefield of guilt leading to resentment, frustration, and the potential breakdown of your own well-being.”

While housing elderly parents may be the right choice for some, assisted living facilities, elderly apartments, and continuous care communities are other housing choices to seriously consider. Who can you contact to get a quick list of available options and guidance?  Physicians, friends, social workers, and nurses are all helpful resources, as is www.eldercare.gov.  Here are three other sources of free information:

  • Area Council on Aging—In addition to offering activities for seniors, local Councils on Aging have a trove of information about local home care services, elder law attorneys, local assisted living, and skilled nursing homes (see www.ncoa.org). Arrange to speak or meet with the director and explain your parents’ situation. They will help you develop a short list of options and provide insight into how best to evaluate choices.
  • Social Worker affiliated with a local hospital or the Visiting Nurse Association—If your parent has had a recent hospital stay, schedule a telephone or face-to-face appointment with the hospital’s social worker. Ask about local facilities and other services that may be of help. A quick call to a social worker affiliated with the local Visiting Nurse Association (www.vnaa.org) may also be useful.
  • A Place for Mom—A social worker who advises families that are dispersed geographically recommended this organization, a free service for families who need to evaluate a range of housing choices. They do not charge the callers, but rather are compensated by the facility where your parent may move (see www.aplaceformom.com).  Skeptical at first, I contacted them recently about a complex family situation that included a loved one with dementia, and I was surprised to find how helpful and how quickly they were able to identify potential facilities that the family could evaluate. (A reminder, I do not have any financial arrangement with this service; they are simply another resource easily accessible.)

In the end, my friend and his sisters evaluated their options and decided, collaboratively with their parents, to move them into an assisted living facility.

Have your parents or older loved ones had to make a housing change? If so, share your thoughts about how best to make that transition.

©Circle of Life Partners™