Lifelong Learning, Arts and Wellness, and Community Design

During the recent National Center for Creative Aging Leadership Exchange, I spoke with several inspired participants whose big takeaway was the confirmation that their community work was indeed using “best practices.”

A comment from a first time participant:
“I am so thrilled that our weekly musical sessions for a variety of senior groups is in line with what the top people are doing. We are going home knowing that our work is backed by research. Lots of new practice about our work was learned and knowing that NCCA will be there to support the work is invaluable.”

As a NCCA Board member, comments like this are critical, because encouraging and providing a forum for best practices for practitioners in the field is the key to realizing our mission, “…to fostering an understanding of the vital relationship between creative expression and healthy aging, and to developing programs that build upon this understanding.”

I was honored to participate in the National Endowment for The Arts Summit, the NCCA Leadership Exchange, and the Creative Caregiving Initiative. The NEA Summit kicked off the week by engaging leaders in the field of aging and the arts; the Summit will result in recommendations for Lifelong Learning, Arts and Wellness, and Community Design. A white paper will be developed for delivery to The White House Conference On Aging in July.

The structure of the Leadership Exchange (plenary and break out sessions for practice, research, and business) really informed all participants, those immersed in the field for many years and those new to the practice of creative aging. Of particular value
was demonstration that creative aging programs and practice require both evidence base research and a business model for sustainability over time. The 2016 Leadership Exchange will continue to provide community projects that demonstrate this sustainable model of practice, research, and business.

The Creative Caregiving Initiative Day held at The Kreeger Museum was a very emotional day because the launch of the Creative Caregiving Guide was realized after two years of collaborative work by national and local partners. Sitting in the audience with my partners (NCCA, artists, University of Central Florida, Share the Care, Winter Park Health Foundation), watching the video models of caregivers, artists, and families using the arts at home represents a vision I’ve had for fellow caregivers. Quality of life for caregivers is the goal and an effort I am honored to fund through The Pabst Charitable Foundation for the Arts. For all of us, we knew that moment at The Kreeger represented a milestone for caregivers around the world!

On June 9th, I will interview Gay Hannah, Executive Director of the Center for Creative Aging, about the aspects of the conference that caregivers should know about.

Margery Pabst is an author, facilitator, and caregiving expert for a number of organizations, including eCareDiary with whom she collaborates and hosts two caregiver radio shows, “Caregivers Speak” and “Caregiver and Physician Conversations.” Margie is also the President-Elect of the National Center for Creative Aging, and a member of the Advisory Council of the newly formed Dr. Phillips Florida Hospital School of Arts & Wellness. Find our more on her website, MyCaregiveringCoach.com.

Vulnerability Is A Virtue In Medicine

This month’s guest blogger is Michael Metzner, a medical student at the University of Central Florida.

Medical students are repeatedly taught the importance of the physician-patient relationship.  We are told that to be a good doctor we must strive to exhibit compassion, empathy, respect, professionalism and confidence all while applying our medical knowledge to figure out a diagnosis and treatment plan. If you add in the pressure of doing this within a 15-minute visit, all while answering questions faster than an Internet search, it can get overwhelming.  But where does vulnerability fit into the equation?

We all have had vulnerable moments in our lives, and most would agree it was not a good feeling. A quick Google search will describe vulnerability as, “A susceptibility to physical or emotional attack or harm,” with common synonyms including, “helpless, defenseless, powerless, and weak.” If a word can have so many harsh connotations, why should we look for it in medicine?

As a medical student and physician, it is very easy to fall into the trap that we must desensitize ourselves. Many tell us that we must compartmentalize our emotions in order to survive. It makes sense as health care providers are constantly surrounded by sick patients: some getting better and others who are not so fortunate. If physicians opened themselves up emotionally to every patient they would simply not be able to cope. Although the thought might be nice, the idea that physicians are superhuman is incorrect. Doctors make mistakes, experience heartache, and need outlets to express themselves. However, there is a mindset in medicine that as health care professionals we should not show our emotions. This lack of vulnerability is not only hurting patient care, but our own well-being.

Brené Brown, a research professor at the University of Houston, has looked at the power of vulnerability and how it applies to the human connection. Dr. Brown defines vulnerability as the “courage to be imperfect and the compassion to be kind to yourself and then to others.” She discusses that vulnerability is necessary for effective human connection and leads to authenticity, thus enabling us to truly connect with others. This authenticity is what is most important in the physician-patient relationship. Many times throughout medical school, we hear that the patient has the ability to lead us to the diagnosis before any diagnostic test. We want our patients to be transparent with us when we delve into some of the most intimate questions, exams, and diagnoses all within minutes of meeting a person. Physicians need to partner with their patients, rather than simply treat disease. This approach will yield optimal results in a patient’s health care outcome.

I had first-hand experience of the lack of empathy and vulnerability in medicine.  During my final exam week in the first year of medical school I was not in front of a computer taking my exams, but instead standing in a busy emergency room watching a middle-aged woman fade away as she suffered from an aortic dissection. That woman was my mother. I watched as they prepped for the emergent operation in an effort to save her life. The surgeon walked into the room, asking if I was the “medical student son” and stated plainly that she was not going to make it. He proceeded to talk about the pathophysiology and etiology of the disease. I will never forget how he described the patient as already going into shock and this surgery would be a last ditch effort to save her life. This surgeon was telling me the horrible prognosis with the mentality of physician to medical student, not from human to human. These dialogues happen so many times in the medical education, but when you are on the wrong side of the conversation it becomes much more apparent how flawed this approach is.  It was simply a disease with teaching points in the surgeon’s eyes. There was not a unique individual with likes and dislikes: no mother, daughter, or my best friend.

This experience gave me an entirely new perspective on practicing medicine. It reaffirmed my advocacy to embrace the side of medicine that unites us all: the underlying human nature of our emotions. My mother would always tell me that I must be the doctor who knew the color of all of my patient’s eyes. Of course this is impossible, and I joked about how ridiculous the statement sounded any time she said it. However, looking back I now know exactly what she meant.

Dr. William Osler said that “it is much more important to know what sort of a patient has a disease than what sort of disease a patient has.” I challenge those in the medical field to be more vulnerable, embrace your own emotions and never let your ability to connect with a patient, another human being, go numb.  Vulnerability is a virtue in medicine. Remember it is a person, not a disease you are treating. It should be acceptable to shed a tear after giving a difficult diagnosis, hug a patient after a medical triumph, or speak to colleagues about how you are feeling after an emotionally draining day. After all, we are all in this life together, and although we may not be able to know the color of all of our patient’s eyes- we can definitely see and treat them more than simply a disease.

Michael Metzner is a medical student.

Caregivers As Leaders, Part II

Last month, I presented the theme of caregivers and leaders. Thank you for your positive responses to the idea that successful caregivers have a vision for their caregiving experience and set proactive goals to help that vision come true. I promised to continue my thoughts about caregivers as leaders in September.

As healthcare becomes increasingly complicated and the number of medical professionals with whom the caregiver must interact become more numerous, communication becomes critical. Many questions about who, when, how arise:

-WHO has key information concerning scheduling, medications, diagnosis, tests?

During each of my caregiving experiences, I made errors in contacting one medical professional only to discover that another person had the information I needed. In the midst of titles like nurse practitioner, physician’s assistant, registered nurse, hospitalist, etc. I was never sure of who might have the information I needed. When specialists and their respective medical teams were called in for my loved ones, the circle of professional teams was wider and even more complicated.

Caregivers who lead will identify the array of roles and will determine what each professional’s job is and most importantly, who has the information required. My recommendation is to ask for short descriptions of each medical professional who is assigned to your loved one, and ask that your primary care physician explain what information each typically provides.

-WHAT is the protocol? What protocols are often changed? What procedures and treatments are being recommended?

Usually your primary care physician in in charge of coordinating this information but not always. Procedures and treatments can change often, so the caregiver/leader checks for what, if anything, has changed from the previous day’s protocols. Asking “What is happening?” on a regular basis
is important.

-HOW questions are often the most difficult to determine; questions like, “How will we know if this treatment is working?” or “How long will this operation take?” reside in murkier territory–they are much more ambiguous, so even though caregiver leaders should ask for this type of information, frustrations around lack of clarity occur.

Do ask “how” questions during the course of your caregiving. The responsive professional will want to help you understand. If you feel you are not receiving useful information, then seek other opinions and even a new primary care physician. Caregivers as leaders ask for information and then advocate for their loved ones based on that information.

Perhaps the most important “how” question you should ask is, “How am I feeling about this situation and about this information?? Successful leaders often rely on intuition, on their gut feel for the situation. Caregiving is no different. After developing as much information as you can about the WHO, WHAT, and HOW, trust your intuition about the situation and its potential impact on your loved one.

Margery Pabst is an author, facilitator, and caregiving expert for a number of organizations, including eCareDiary with whom she collaborates and hosts two caregiver radio shows, “Caregivers Speak” and “Caregiver and Physician Conversations.” Find our more on her website, MyCaregiveringCoach.com.

Caregivers as Leaders

Caregiving is an increasingly complex job involving coordinating, influencing, mentoring, and supporting loved ones and friends. What pulls it all together is the caregiver who has a vision and goals for a care partner’s healing. As I contemplate these varied and extended roles, what emerges is a picture of leadership. Done well, the successful caregiver leads, not unlike business leaders who need vision, goal setting, and planning to ensure success.

As a caregiver, I was usually good at coordinating schedules, medications, and appointments. Further, I found influencing family and friends, mentoring others to take over when I needed a rest, and supporting my care partner emotionally and physically went well most of the time.

What I did not have was an encompassing vision and goals that, despite having bad days now and again, would sustain me over the long haul and provide perspective on the big picture. In essence, I was not leading the situation but rather reacting to each given situation or struggle. As a consequence, my reactions to each situation/challenge could be blown out of proportion.

Years earlier, I taught leadership at some of the Fortune 500 companies; that training was all about having a vision and a set of goals for rallying people toward business outcomes challenges, for identifying win/wins for the business and its customers.

One day, after a particularly fractious situation with my care partner, I asked, “Where am I going wrong here?” “How can one challenge ruin the whole day?”
That day represented a turn for the better in my caregiving journey as I wondered aloud, “Could my prior leadership training experience inform my caregiving role?”

The answers to that question yielded similarities that astounded me. Yes, caregivers were, and are leaders by applying principles of vision, goals, and planning. Yes, when caregivers have a vision and goals for themselves and their care partners, days go better and often healing hastens. Creating meaningful days for my care partner and me became my vision. “How can we make memories together?” I asked.

Focusing on my vision and goals for making memories rather than just getting through each day made a huge difference. Everyone was happier. I discovered that any personal anger and frustration was usually deflected and instead focused on my vision. Yes, there were moments, even hours and days, when it was rough going, but the focus on meaning and memory was stronger than even the toughest times at the doctor’s office or the hospital.

Recently, I was introduced to the notion of having a “quality day.” I love the concept because “having an overall quality day” is both useful and inspirational. Caregivers as leaders are ones who inspire and share a vision with their loved ones whether they be family or friends.

I will continue to explore Caregivers as Leaders in my September blog.

Margery Pabst is eCareDiary’s caregiving expert and the author of books and blogs on caregiving. She is also the author of the C.A.R.E. Program which can be found on her website, www.mycaregivingcoach.com. She hosts two radio shows, “Caregiver and Physician Conversations” and Caregivers Speak”, both sponsored by eCareDiary.com.

Turning The Page On Aging

How we view aging affects our longevity and our loved ones health and well being. I am convinced that viewing aging as a powerful opportunity to develop perspective, wisdom, and hone old and new skills enhances chances for a longer and happier life. Our attitude as caregivers toward aging and illness affects the attitude of our care partners too; in fact, more and more medical professionals estimate that upward of 30-40 percent of healing is affected by our psychosocial and emotional views.

A case in point: Henri Matisse (1869-1954) was one of the most innovative painters of the twentieth century but for the last seventeen years of his life turned to an entirely new approach to making work, cutting shapes from painted paper. Health problems in the early 1940’s limited his mobility, but as his strength declined, the ambition and scale of his new cut-out method increased. Some art scholars consider Matisse’s later work more groundbreaking than his earlier painting!

Such new found expression and exploration is not just for the artist!! Each of us can and should develop our sense of exploration and curiosity as we age despite physical or mental loss. Given the statistic that 8,000 of us are turning 65 every day, our communities and country need all of us to remain as vital and engaged as possible.

A couple of weeks ago, I attended the National Center for Creative Aging Leadership Conference in Washington DC, a three day event showcasing the importance of using the arts (visual, music, dance, storytelling, and poetry) as ways to avoid loneliness, boredom, and depression. Arts as an antidote create connectedness, inclusiveness, and belongingness with our communities, our friends, and family.

Research documenting the validity of the arts is in the early stages; however key measures are emerging that point to reduction of stress, enhanced well being, and overall increase in having “quality days” for caregivers, care partners, and families.

On July 8, I am interviewing Dr. Jeffrey Levine, photographer and practicing physician at Mt. Sinai Hospital. Please join us as we explore attitude and expectation about aging and illness on my radio show, “Caregiver and Physician Conversations” sponsored by eCareDiary. Access the show via my website mycaregivingcoach.com or eCareDiary.com.

For information on ways to use the arts at home with your care partner and with loved ones, visit creativeaging.org or my website at mycaregivingcoach.com

Margery Pabst is the author of “Enrich Your Caregiving Journey” and “Words of Care”, as well as eCareDiary’s caregiving expert. Margery is also the Founder and President of The Pabst Charitable Foundation for the Arts and serves on the board of The National Center for Creative Aging. Visit her websites at mycaregivingcoach.com and PabstFoundation.org.

Day 2 Recap: NCCA’s The Creative Age Conference

Convention Diary
Thursday, June 12, Washington DC

Today took flight in our nation’s Capitol beginning with Dr. Marc Agronin, a geriatrician, whose patients are in their 80’s and 90’s. Dr. Agronin’s presentation focused on the real facts of aging, exploding the stereotypical comments often made about the last half of life. Instead, he demonstrated the possibilities and potential that Dr. Gene Cohen, the Founder of NCCA, established as ground breaking work in the last thirty years. More potential and perspective exist for all of us because of our accumulated experiences and perspectives. It was a funny, fact-filled, and hopeful presentation!

As the day progressed, concurrent sessions devoted to research in the field of aging, the power of storytelling, creating communities, caregiving, and person centered care enlightened us and reinforced the vision of creating a world where elders are celebrated and encouraged to explore their creative powers.

Dr. Wendy Miller, wife of the late Gene Cohen provided an emotional and insightful presentation on the work they did together on the book, “Sky Above Clouds”, which she is currently finishing.

I am looking forward to the 2015 NCCA Conference in next May in Washington DC which will coincide with the President’s National Conference on Aging.

Day 1 Recap: NCCA’s “The Creative Age, Exploring the Second Half of Life”

Margie is attending the National Center for Creative Aging Leadership Conference in Washington, D.C. Each day Margie will be blogging about the experience.

Convention Diary
Washington DC
Wednesday, June 11

Today we discovered a creative “forest” of arts experience vital to all ages but particularly for those with memory illnesses. I was reminded of one of the top three caregiver needs cited on an AARP survey stating that “having engaging activities to do with a loved one at home” is critical to both caregiver and patient wellbeing and quality of life.

Our experiences today ranged from visual arts to dance to song to storytelling to poetry. I am always reminded that we learn more from experiential engagement than from anything else. Every art form brought people together in a collaborative format. As we age, the enemies are loneliness, boredom, and depression. Art engagement is the antidote for these enemies, providing in the moment opportunities for building self-worth and community.

Art also builds expectations about what we each can accomplish. For the person experiencing memory loss, engagement in art demonstrates that creativity never leaves, that caregivers and the people they care for can find a better quality of life at home building a legacy of family memories.

Thursday is the main day of the convention; over 250 attendees will explore the challenges and the opportunities that aging and the arts hold for all of us. Until then…..