ISSUE 6 | 2019
FAMILY ISSUES
SECRETS
to rejuvenating muscle health
FAMILY DYNAMICS around caring for aging parents
COMPASSION A MODEL TO LIVE BY
HOLIDAYGIFT IDEAS
Give the gifts they'll remember IMPLEMENT AN EFFECTIVE ESTATE & ELDER CARE PLAN a how to guide
ith the holidays in sight, I chose a topic that we all can relate to, for better or for worse….family. It’s true what they say, you can choose your friends but not your family. They are the group, no matter how big or small, that we are bound to throughout our lives. They are the people with whom we share much more than DNA and physical traits but also, personality traits and memories. Yet, with all that ties us together, everything can so easily come undone. Few families escape this life without tragedy or trauma. Many times they experience rifts that deepen over time and often never reach a resolution. As a funeral director, I’ve bore witness to many sad occasions when loved ones cried out wishing for a chance to make amends, but it was too late. It’s hard to imagine people who were once so close, fall victim to senseless feuds that rip them apart. There are common culprits often associated with family feuds, specifically, pride and ego. It’s a difficult step to make the first move or to be the first one to pick up a phone. For some, it’s the pride of believing they were “in the right” and need not apologize, for others, it’s the fear of uncertainty; not knowing the reception that will follow on the other end. These reasons often become the justification to not make the call. Then, of course, there’s time,
EXCLUSIVE
W
EDITOR'S NOTE support and guidance. For those whom this message is resonating most strongly, it’s never too late to make amends. While you are living and breathing, you can pick up that phone, you can make that first step. In the end, it really
doesn’t matter how it y l i m began. What ultimately Myfa matters the most is the
often the greatest enemy. When too much of it passes, we lose our will to make amends or we even forget what the fight was about. Yes, family dynamics are complicated. They are often compounded by life circumstances, specifically caring for ill or aging parents and loved ones. Caregiving is a physically, mentally and emotionally straining task often creating quarrels beyond repair. It's true, the ones we love the most are often the ones who frustrate us the most. The following pages are meant to be a resource of help,
family unit.
Don’t let
future generations pay for
the
mistakes
of
generations past. This holiday season, allow yourself the gift of family. On behalf of my family, our best wishes to you in the holiday season and the coming year!
Jen
COMING OF AGE | 01
COMING OF AGE
CONTENTS 26 Gift Giving Guide
03 Secrets to Rejuvenate Muscle Health
Holiday gift giving. Ideas on p. 26
1 EDITOR'S NOTE: Jennifer Graziano 22 3 Honorees that Made the Difference Find out about THE upcoming BENEFIT. 11 Strategies to Maintain Family Harmony 5 steps to take 13 Family Dynamics in caring for Aging Parents 16 Your Voice.Your Choice. Maintain Dignity by Using Compassion 24 Anchors in the Storm A true story
Editor: Jennifer Graziano
06 - 09 Feature Article: Documents to Help You Effectively Plan and why is "Effective" planning necessary.
02 | COMING OF AGE
Contributing Authors: Patricia Bave, Esq. Jennifer Christensen Dr. Donna Coletti Maureen Fitzsimons Joe Soricelli Sherry Torkos, B.Sc.Phm., R.Ph. Publisher: Jennifer Lanser / JL Harbrook Copyright Š 2019 All rights reserved. No part of this publication including but not limited text and photographs may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher. For permission requests write to the publisher addressed.
a growing body of evidence
More Weights, Less Cardio Overdoing it with cardio doesn’t
suggests
allow time for muscle recovery
inadequate
and regeneration and can also
because it does not take into
take
from
account physiologic changes
exercises.
that occur with aging and the
Resistance exercises will give you
fact that older adults need
the
about 67% more protein per
time
away
strengthening greatest
benefit
for
your
that for
RDA
older
adults
meal
synthesis; the process by which
protein synthesis[i] and support
your body builds new muscle.[i]
good health, promote recovery
Tipton
from illnesses and maintain
KD
and
Wolfe
R.
Exercise,
protein
Exerc Metab 2001 Mar;11(1):109-32.
stimulate
is
muscles, boosting muscle protein
metabolism, and muscle growth. Int J Sport Nutr
to
the
functionality.
muscle
Recent
studies
suggest that 25–30 grams of a high quality protein per meal is
Workout, Eat, Sleep: Refueling after workouts is crucial
necessary
to
threshold
start
the
recovery
replenish
lost
muscles’
energy
process,
glycogen
to
reach
for
the
maximal
(your
stimulation of muscle protein
and
synthesis in older adults.[ii] The
stores)
providing the nutrients your body
good
needs in order to repair muscle
suggest
that
and grow more of it. Studies
with
particular
suggest that poor sleep quality
essential amino acids, called
and
is
Rejuvenate, can help prevent
associated with an increased risk
muscle loss and rebuild lost
for muscle mass reduction.[i] If you
muscle. This patented formula
are getting less than 6 hours of
was found to increase muscle
sleep a day, you are limiting your
protein synthesis by 57% with
body’s ability to naturally produce
noticeable
crucial muscle-building chemicals.
improvement
x Chen Y, Cui Y, Wu Z.
days[iii]. Rejuvenate is backed
short
Relationship
sleep
between
duration
sleep
and
muscular
strength among Chinese university students: a cross-sectional study. J Musculoskelet Neuronal Interact 2017 Dec; 17(4): 327-333.
news a
is
that
studies
supplementing blend
muscle
of
mass
within
30
by 25 peer reviewed published studies
demonstrating
its
safety and efficacy. Rejuvenate can be mixed with water or
Pair Protein With Essential
incorporated into your morning
Amino Acids:
smoothie or favorite beverage.
The
04 | COMING OF AGE
recommended
daily
Each serving contains only 5
allowance (RDA) for protein is 0.8
calories, is low in fat and sugar,
grams
and free of dairy and gluten.
per
kilogram
weight. However,
of
body
Sherry Torkos, B.Sc.Phm., R.Ph.,
Rejuvenate is available in retail stores throughout the United States, including Walmart, CVS or online at www.rejuvenatemuscle.com. [i] Moore DR, Churchward-Venne TA, Witard O et al. Protein ingestion to stimulate myofibrillar protein synthesis requires greater relative protein intakes in healthy older versus younger men. J Gerontol A Biol Med Sci 2015 Jan;70(1):57-62. [ii] Deer RR and Volpi E. Protein Intake and Muscle Function in Older Adults. Curr Opin Clin Nutr Metab Care. 2015 May; 18(3): 248–253.
Keeping your muscles healthy as you age not only keeps you healthier, but it will also benefit your bones, help stabilize blood sugar, improve your endurance and allow you to enjoy better quality of life as you age.
is a registered pharmacist, author and health enthusiast with a passion for prevention. She graduated with honors from the Philadelphia College of Pharmacy and Science in 1992. Since then, she has been practicing pharmacy using an integrative approach, combining conventional and complementary therapies to optimize health and prevent disease. Torkos has won several national pharmacy awards for providing excellence in patient care. As a leading health expert, she has delivered hundreds of lectures and is frequently interviewed by radio and TV talk shows throughout North America and abroad. Torkos has authored 18 books and booklets, including The Canadian Encyclopedia of Natural Medicine.
COMING OF AGE | 05
COMING OF AGE Feature article
."...the focus needs to be on 'effective' planning to accomplish specific goals, and not just planning." - Patty Bave, Esq.
A Plan that Makes a Difference: HOW TO IMPLEMENT AN "EFFECTIVE” ESTATE AND ELDER CARE PLAN
By Patricia Bave, Esq.
06 | COMING OF AGE
E
veryone talks about the need for planning, estate planning and long term care planning; and planning is very, very important. However, the focus needs to be on “effective” planning to accomplish specific goals, and not just planning. We, as estate and elder law planners, can assist a client with all the appropriate documents for an estate/elder law plan, but, if the people chosen to manage a client’s affairs during life or after death will be mired in conflict, or if a lack of communication about the plan results in resentment or conflict among the beneficiaries, the client’s goals will not be met. There will be
family discord and hardships despite the plan. And, in these times when people are living longer, any discord or hardship directly affects the client and his or her ability to age peacefully. Admittedly, when a person becomes incapacitated or dies, it is stressful and can exacerbate long standing issues among family members. This stress can lead to conflict in the form of dueling powers of attorney and health care proxies, conflicting applications for guardianship, denying access to loved ones, Will contests and more. Many times the paths to conflict began long ago when perhaps
A Tparents T I C | decided J A N U A R Yto2 0treat 16 children
differently perceived
because different
of
their
needs.
For
example, the parents may have allowed one child to live at home
1
Choose
an
estate/elder
them
and
to
your
planning attorney with whom
beneficiaries. Be clear about
you can connect, and be open/
your wishes and instructions.
transparent with that attorney
You may need to appoint
as to all “issues” that are likely
non-family members to be
have
to create conflict in the future.
your fiduciaries. Do not give
assisted with the parent’s care, but
He or she will be a strong
your beneficiaries unrealistic
now that the parents are deceased
advocate for you and your plan.
expectations
rent
free.
The
child
may
or in a nursing home, what should be done for the child who remains in the home and cannot pay rent or the carrying charges? If the parents left only Wills leaving everything to their children equally after they die, would this be “effective” planning? Absolutely not.
Steps Leading to an Effective Plan In order to create an Effective Plan, we recommend you follow these steps:
2 3
about
your
estate, as reliance on an
Implement your plan when
inheritance generally leads
you are healthy and able to do
to significant difficulties.
it
yourself
support
without
or
approval
major from
4
known “issues” as possible
relatives. Choose
Try to resolve as many through
your
proposed
fiduciaries (agent under power
and
your
communication
transparency beneficiaries.
with You
of attorney, health care proxy,
might suggest mediation
executor,
carefully,
to your loved ones as a
and communicate your plan to
way to resolve issues. Your
trustee)
estate /
COMING OF AGE | 07
19
19
ATTIC | JANUARY 2016
elder planning attorney will be
and what a “distributee” or “heir”
burial
there to support you. Take steps
is versus a beneficiary.
also be a source of conflict.
in your planning that minimize the need to turn to loved ones as a way to resolve issues. Your estate/elder planning attorney will be there to support you.
5
7
As the distribution of tangible
background work done, you
personal
and your attorney can then
source
property is often a of
significant
conflict,
decide what documents are
consider including in your plan
needed to implement your plan. For the most typical
Take steps in your planning that minimize the need to turn to
Making gifts during lifetime;
the
Marking
to
enforce
your
items
list of documents see the list
with
wishes. For example, have in
beneficiaries’ names; or
place a current, durable, Power
Preparing
of Attorney and Health Care
(not
Proxy so that you can avoid
helpful
guardianship if you become
whom you want to receive
incapacitated. Create a lifetime trust
which
can
allow
for
administration of your assets before your death and avoid probate of your Will after your death. Also, generally, it is more difficult for a family member to contest a trust than a Will. You also might want to consider an incontestability clause in your Will or trust that provides that your beneficiary can lose his/her inheritance
if
he/she
unsuccessfully challenges the Will or trust.
6
Take
the
understand
time
to
truly
how
your
plan
works so there are no surprises. For example, make sure you understand how joint owners of assets or direct beneficiaries of accounts
differ
from
beneficiaries under your Will,
08 | COMING OF AGE
can
So with all of this thorough
the following:
courts
arrangements
8 9
a
memorandum
legally to
binding
but
beneficiaries)
of
which items.
on the following page. The road to creating and implementing an “effective” estate and elder care plan can
be
with
a
expertise
or
post
nuptial
difficult
one.
However, it is possible that
In the case of a second marriage, prenuptial
a
the
support of
the
law
and right
agreement can help to reduce
estate/elder
planning
conflicts.
attorney to assist and guide you, your goals can be met
own
and
pre-
minimized and addressed.
arrangements or appoint an an
The investment of time and
agent
money is well worth the
Consider
making
funeral
or for
your
burial making
those
arrangements, as funeral and
conflict
can
benefits of an Effective Plan.
be
Estate and Elder Care Planning Documents to Consider Typically, the list of possible documents includes: a. Last Will & Testament, with or without a testamentary trust; b. Revocable Living Trust (avoids probate and is more difficult to contest than a Will); c. Irrevocable Trust (generally for estate tax and Medicaid or asset preservation planning); d. Durable Power of Attorney with or without Statutory Gift Rider (appoints a financial agent and allows agent to implement estate and/or Medicaid and asset preservation planning); e. Health Care Proxy (appoints a medical agent); f. Living Will, MOLST, or Five Wishes (expresses your wishes about end of life decision making); g. Appointment of an Agent for Burial/Final Arrangements. Patricia A. Bave (Patty) is a partner with the law firm of Kommer Bave & Ollman LLP located in New Rochelle, New York with satellite offices in Mount Kisco, White Plains, Manhattan, Greenwich and Stamford. Patty is an attorney whose main areas of practice are elder law, estate planning, estate and trust administration, guardianship and special needs planning. Patty and her team at KBO bring a holistic approach to elder law to address all their client's needs with compassion and competence. They can be reached at (914) 633-7400 or via email at pbave@kboattorneys.com or visit their website at www.kboattorneys.com
COMING OF AGE | 09
Do they know? If you want to be buried or cremated?
If you want a visitation for those who knew and loved you?
If you have a favorite photo,.. song,.. or prayer?
If you have a special way you'd like to be remembered?
Perhaps you should tell them... Pre-arranging a funeral allows you to make choices and selections so that your loved ones are not left to guess, but rather, are able to grieve. Don't assume your family will make the same choices you'd prefer. Let your voice be heard and your wishes known. To speak to a licensed, trusted and knowledgeable funeral director, call us at (203) 869-5968 or (914) 698-5968 or visit www.coxandgraziano.com. We are not sales people, but we are a family.
767 E. Boston Post Road Mamaroneck, NY 10543 (914) 698-5968
134 Hamilton Avenue Greenwich, CT 06830 (203) 869-5968
5 STRATEGIES FOR MAINTAINING FAMILY HARMONY WHEN A PARENT NEEDS HELP
here are some strategies to help keep family harmony:
PLAN A FAMILY MEETING
Use this occasion to evaluate the situation and air any concerns or expectations. For instance, Mom and/or Dad may want to age in place - their home. Will it be physically and financially feasible? Someone should prepare list of potential issues. The meeting often raises more questions than answers.
GET PROFESSIONAL ADVICE
BY JOSEPH SORICELLI, AIFA SRES CMP A need for care is a frequent family issue. Whether it’s the realization that mom/dad just aren’t themselves or, unfortunately, the crisis of a fall, a stroke or a death, planning with time-tested strategies can reduce stress, plan financials and keep family harmony. Parents don’t want to be a burden and don’t want to give up their independence. Communicating these desires to family is so important and planning to make them happen is a process. A family must have contingency and continuity plans in case of an emergency. Family members should have roles and must communicate their concerns and ideas with each other. Businesses have a person in charge but need the support of their team to get things done. If lines of communication break down, even the best plans cannot be implemented. Businesses hire professional advisors to help and so should families. When you start to plan for a parent's care
Many times, family meetings can yield “loving confrontations”. Emotions will be a factor as difficult decisions are being made. Everyone may have different goals and objectives. It is a professional who is familiar with all aspects of a care plan and financial plan who can help guide the family through this process.
PREPARE SOLUTIONS AND ALTERNATIVES... don’t just keep creating issues. Throughout the process, everyone must make sincere attempts to move toward workable arrangements not just verbalize their fears or concerns. A professional will help design a plan to meet the agreed-upon goals and knows strategies and resources (Medicare /Medicaid) to accomplish them, as well as the pitfalls of poor planning.
SHOW RESPECT... for everyone's concerns and feelings. Nothing should be shelved or summarily dismissed. By showing respect at this time and addressing the concerns of each family member
you will avoid future conflict and avoid the blame game.
PUT THE PLANS IN WRITING ...and follow-up. Set a follow-up meeting with the advisors and have them prepare a document - “A Plan of Action” - that is acceptable to all. All may not agree but they will at least know the plan.
“Businesses hire a person in charge [and] professional advisors to help and so should families.” The most important thing that a family can do is to have a plan that addresses the needs and concerns of all and which has been created with the guidance of a professional. A professional advisor can help you identify the issues and suggest solutions as a parent ages, with respect to insurance, finances, Medicare and Medicaid. Everyone has questions when navigating through these times and professional advice is key.
ABOUT THE AUTHOR
Joseph L. Soricelli "Joe" is an independent Consultant with over 30 years planning experience. Joe has dedicated his lengthy career to helping people plan for all Four Stages of Retirement. Joe is an Accredited Investment Fiduciary, Certified Long-Term Care Consultant, Certified Medicaid Planner and Senior Real Estate Specialist. Joe spends much of his time in the community giving presentations about a wide array of Aging Issues that we all face at some point in our lives such as: Medicare, Medicaid, Long-Term Care, Housing, Estate Planning, Income Planning, Asset Protection, and Fraud Prevention. Aging Issues can be reached at (914) 468-0186
COMING OF AGE | 11
F A M I L Y
D Y N A M I C S
P A R E N T S
~
B Y
A R O U N D
C A R I N G
J E N N I F E R
F O R
A G I N G
C H R I S T E N S E N
The challenges of co-existing with siblings are well documented – from the temperamental daughters in Shakespeare’s King Lear to The Kardashians of reality TV.
provide emotional support. A wellmeaning sister might make impulsive decisions about money that can have disastrous long term impact. The scenarios are endless.
Rarely is it more fraught than when family members are trying to help an older parent navigate the lifestyle changes associated with aging. Selling a family home, giving up the car, choosing a retirement community, deciding on care options or end of life decisions can train family relationships, often beyond repair.
“Every family is different, and their dynamics reflects these differences,” said Michele Schreer, LMSW, Director of Independent Living at The Osborn, the non-profit continuum of care community in Rye, New York. She helps residents and their families work through these issues when one or both parent’s health begins to decline. “These dynamics usually surface when there is a crisis and the parent needs their children for support.”
A disengaged brother may suddenly appear on the scene and expect to be a hero. A financial expert may view the situation through a professional lens, but might not have the empathy needed to
COMING OF AGE | 13
PLAN AHEAD
time, but we got through it together.
Families can get through these challenging times more effectively if they talk through various scenarios with their parent, and among themselves, well before decisions are needed.Having the parent’s wishes in writing and sharing relevant documents among family members puts everyone on the same page. While it is inevitable that something will happen, it does not necessarily means that it needs to upend the family.
FOCUS ON THE PARENT,
Melissa Norgaard and her siblings recently experienced their mother’s transition from the hospital into hospice. “It was tremendously helpful that Mom had articulated her wishes clearly from the outset,” said Melissa. My siblings immediately slipped into natural roles. One in the legal profession was better suited to set up the power of attorney and advance directives. As the eldest child, my sisters and brother looked to me as the spokesperson for the family,” said Melissa. “It wasn’t an easy time,
Keeping the focus clearly on what is best for the parent, in terms of health, safety, and sense of well-being, is of utmost importance. Always circle back to what they have defined as their wishes, framing family discussions as "what does Mom want." The answer to that question may not be what one child wishes – life support for example – but it is the parent’s wish that is the guiding principle. “When a parent is experiencing a decline in health or cognitive abilities, there’s a grieving process associated with the loss of the parent as they once were,” explained Patricia Kummel, JD, Ph.D., a psychologist who works with individuals and families during times of transition. “The role reversal, when child is taking care of parent instead of the way it had been, is destabilizing at best.” Family members need to understand that their parent is emotionally fraught
by having to give up control of their life – moving from a family home, losing long-term relationships and watching abilities fade,” said Dr. Kummel.
SUPPORT EACH OTHER Of course, adult children have their own emotions as they come to understand that their parent is no longer the strong,competent force in their lives,” Dr. Kummel explained. “People get triggered and old rivalries return. This is counter-productive to decision making.” As if the end stages of life are not distressing enough, a dysfunctional family dynamic can add stress to an already fraught situation. Siblings should avail themselves of outside support services like a therapist or support group instead of expecting the parent to take on that role. Everyone has to go through this at one time or another, don’t be afraid to ask for help! Dr. Kummel encourages families to make extra effort to stay connected to each other and to their parent by regular phone calls or SKYPE sessions so the parent still feels that they are involved. “Your Mom needs to feel like she is still part of the action!” The Osborn is a continuum of care community in Rye, New York, that offers Independent and Assisted Living, including Memory Care, as well as Skilled Nursing and both Short-term and Outpatient Rehab, as well as home care in Fairfield and Westchester Counties through Osborn Home Care. For more information visit: www.theosborn.org.
14 | COMING OF AGE
YOUR VOICE. YOUR CHOICE. Maintaining the Dignity of All with COMPASSION: An Interdependent Model of Care PART I: Changing the Medical Model: True support combines information & emotion DR. DONNA COLETTI
Y
ou may recognize the Bill Wither’s song “A Lovely Day” from the 2016 animated film “The Secret Life of Pets” which highlighted the intellectual and wildly emotional social lives of inner-city pets when their owners are away. However, the above cartoon illustrates the mindset of a different animal. It denotes how in medicine, there can be the overemphasized focus on problem solving through intellectualization without emotion resulting in a less obvious focus on the essence of
16 | COMING OF AGE
healing. Palliative medicine attempts to build a bridge between these potential gaps in our approach to care. It is a specialty that is team-based and patient-family centered. It focuses on pain and symptom management, determines goals of that care with the intention of delivering care they want, and it avoids care they feel isn’t consistent with their wishes all while providing family support. It’s heavy lifting that often causes emotional challenges to the team requiring clear communication, interdependency and self care. It
requires both acknowledgement and the integration of one's intellectual quotient (IQ) and/or emotional quotient (EQ). Remember our friend in the cartoon who needs to recapture his emotional connection in order to promote healing. What I hope to convey is that it is indeed a lovely day and a pivotal time in healthcare. In part, due to the rising acceptance of palliative medicine, clinicians are learning skills to better communicate and align with curative medicine at the onset of a serious illness resulting in an integrated model of care empowering
patients and families to be better able to express emotions, thoughts, concerns, fears and wishes. It demonstrates that by focusing on communication and consideration of each as a whole person. The provider and patient alike; one establishes trust, provides exceptional care and maintains their hope and resilience. This integrated model of care is based on acknowledging the inter-dependency of the patients, families, allied caregivers and clinical staff. It consists of 10 letters so I’ll call it Top Ten Tips for namely: COMPASSION.
care,
Communication: Pets aren’t the only one’s with secret lives. The “Secret Life of Doctors” is that we too have emotions but sadly the stressors of complex illnesses, worried patients, concerned and conflicted families, poor training and the financial constraints of care can result in miscommunication and mistrust with their patients that leads practitioner burnout. Palliative medicine reports one of the highest rates of burnout reported at 62%. So, let’s talk about intention: A common emphasis is on treating and
curing the disease rather than identifying and healing the physical and emotional wounds of the person. The lessening of suffering has turned into a race for the cure and what is being done TO rather than FOR you. When you act with compassion, you help the patient maintain a sense of self. It’s important to understand that the “Disease” is a pathophysiological process whereas the “Illness” is defined by the patient’s belief system and culture which in turn determines how they deal with, react to and live with the disease. It is critical to remain present to the nuances of language used which is often expressed with profound emotion such as being exhausted, in pain with feelings of hopelessness and helplessness and often don’t know who they are anymore or “being a burden” indicative of a patient’s and their family’s suffering. Identifying and naming these feelings and emotions rather than avoiding them due to a lack of skill or fear opens up communication, sustains hope and promotes healing. We need to redefine hope along the course of illness, no longer walking the high wire act of bargaining for time over equality without a safety net. We can have all three. It’s your voice. It’s your choice. Perhaps you’ve heard the expression,“ The longest journey one can take is the 18 inches
from their head to the heart”? I believe it’s time for medical providers and patients to get out of their heads and video screens by getting better in touch with their own emotional well-being for everyone’s sake. By acknowledging the personal relationship is the starting point for a true healing process. It identifies that the "informational download” in which we exist and function is not all at play. In order to better align ourselves, one needs to balance IQ and EQ. Offering a new perspective not a new name. Palliative medicine focuses on “suffering with” the actual definition of compassion, in order to achieve a better quality of life. But no one likes the word concept of suffering or death, preferring to use euphemisms ie: “not doing well”, passed on”. There has been such misconception of palliative medicine being only for those at end of life that the term “Supportive Care” is being commonly used to ease the introduction of patients to care that palliative medicine offers. It’s often said that bringing up palliative care would cause patients to lose hope. I believe we need assist patients and family a path to redefine their hope to one based on lessened suffering, rediscovered meaning and purpose rather than time. A recent international survey study of palliative researchers and clinicians noted it was too
COMING OF AGE | 17
late for a change in name. Rather we need to change attitudes. I agree and I’m not alone. Dr. Nuala Kenny a Canadian pediatrician and Sister of Charity as well as the former Deputy Minister of Health for Nova Scotia describes Western Culture as a Death Defying, Death Denying one which raises many ethical and practical concerns. Being death denying and defying is a problem,especially in the US where our death rate is one every 12 seconds. Each day over seven thousand people die and an additional ten thousand turn 65. So, it’s likely you are either a member of this grey tsunami, love and or are caring for one or living with or near one. Meaning in one’s life is
18
| COMING OF AGE
maintained with compassion despite suffering from the uncertainty of illness. It is the value of the therapeutic presence without fear of abandonment when curative therapy is no longer possible that establishes trust. Wholeness of identity is favored over a shattered self with compartmentalized functioning on the part of both caregiver and patient. The meaning of their pain is explored and discussed throughout this partnership whether it be anxiety, depression or fear of advancing disease and its impact on their loved ones. PART II: A Legacy of Dignity Personhood is preserved despite experiencing transitions of identity as when
a parent becomes the one being cared for by their child. Among innumerable other lessons, my parents taught me this one I was nine months old and and we had just moved to Long Island when my father, then a 38 year old Lehman Brothers securities analyst was diagnosed with advanced throat cancer. After 2 ¾ years of failed radiation therapy, he suffered through an experimental surgery leaving him disfigured and mute being fed through a nasal tube for over a year. But despite this, and throughout a 2 year recovery, he never identified or acted as beinbeing limited or defeated and no one treated him as such. It may sound trite but he and my mother lived as
though every day was a gift, focusing on gratitude for what they HAD versus what was lacking.Achieved empowerment through a shared dignity and purpose. Disease may have claimed his voice and temporarily physical strength but it never claimed his spirit. Choices for his care were based on dignity and he was not held back by disfigurement or silence. Support structures were in place. Dame Cicely Saunders may have coined the phrase “Total Pain” as the physical, psycho social, existential, spiritual and practical aspects of illness but my parents lived it out. It took a village. Blessed with a devoted mother-in-law who moved in to care for their four children under the age of
15, friends that visited from all over the tri-state area, local parishioners, Knights of Columbus and fellow bowling team members and most notably for 1963, his firm allowed him to work from home. But specifically, it was their spirituality that lent a sense of connectedness to things beyond themselves and the larger community that provided meaning and purpose by being of service to both each other, their family and friends. Start and share the longest journey. By now, you may be asking yourself, “How did an Ob/Gyn come to provide palliative care”? You see, both fields are essentially about dealing with the emotions of transition.
Ultimately, I came to appreciate that life is not linear but as they say in the “Lion King”, “It’s the Circle of Life” with birth and death being merely the transition points. Forty-five years after his diagnosis, I embarked on that long journey of 18 inches which my parents seemed to intuitively understand. My husband and I moved my parents into our home for what we thought would be Dad’s 2 week life expectancy; as per the hospital physician’s prognosis. It’s important to note that doctors are notoriously bad in prognosticating life expectancy being correct averaging only about 20% of the time which only muddies
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the conversation. Once again, he defied the odds as 3 months later hospice was brought in and 16 months after experiencing for myself this practice of “slow” medicine, the nurses turned their compassion toward me noting “Dr. Coletti, someone’s going to the emergency department and it’s not your Dad. It’s time to move him to move him to our facility and you need to return to being his daughter, not the primary caregiver.” move him to our facility and you need to return to being his daughter, not the primary caregiver.” The reality of their words struck hard as our pact when we first discussed moving them to Connecticut was that he would never enter a facility. At that time, Dad wrote us a letter describing
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he “wall of love” that came over him upon hearing this plan and now, I had to revoke that pledge. Shockingly, it was his response to this news that now left me speechless. He mouthed “I know that, I’ve just been waiting for you to figure it out”. He was ready to move on and allowed that “wall of love” to flow back, taking me out of my head and the focus of what I felt I had to do to keep him alive and into my heart, in order to let him go. This patient was always first and foremost, dignity.the parent teaching their child how to live and how to die with dignity. The crucial point was for me to turn compassion inward before it ever could be extended outward. I needed to practice what I preached and stopped trading his quality of life for
more time for me thus honoring his humility, compassion and dignity. PART III: What You Can Do to Sustain Dignity Purpose and Meaning Initiate advanced directives: Define and serially update your goals of care through shared decision making with your family and physician with living will documents such as The Five Wishes, The Conversation Project or the website, PREPARE. Despite passage of the federal congressional Patient/SelfDetermination Act (PSDA) of 1990, a 2017 systematic review of 150 studies reported a 37% completion of advanced directives.A US 2014 study noted that for those over 60yrs, approximately 70 percent completed advanced
directives prior to their death but sadly this trend has had little effect upon hospitalization and hospital death, suggesting that completion of these documents alone is not enough. In order to be best prepared to receive the care one wants, there needs to be clearer communication of the expectations for not simply survival but a maintained quality of life which demands moving toward acceptance of the inevitability of death. In one prospective, longitudinal study, only 37 percent of patients with advanced cancer had an advanced care plan conversation before death. All fault does not lie with the patients as a national poll revealed that 99% of physicians thought advanced care planning was important but about 50% admitted not knowing what to say with a third noting never having prior training in these discussions. Furthermore, a 2011 study of oncologists revealed that 45% admitted having no explicit training in end of life conversations.
other people are dealing with these issues. Clinicians and patients need to share their experiences. By expanding networks of support whether it be clinical debriefing meetings, yoga classes, caregiver “night outs” or simply giving patients permission to express fears of guilt, of being a burden or being abandoned as disease progresses all contributes to healthier care providers and care recipients. Notice your heartbeat. Finally, I encourage you to embark upon your own journey of 18 inches by placing your hand on your heart, feeling it beat and giving yourself permission to note a sense of gratitude for what you have and not what is lacking. Try to not lose further time and the opportunity to experience joy and potentially lessen suffering in yourself, loved ones and others by your example. The poet, Mary Oliver once asked, What are you going to do with your one wild life? It’s your voice, it’s your choice.
Open up to community and seek assistance through government agencies, senior centers, houses of worship, meals on wheels, local town halls and libraries. See how
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The Benefit
for Greenwich Hospital is Friday, May 15, 2020
Greenwich Hospital's Chairman of the Board of Trustees, Arthur C. Martinez, Mrs. Elizabeth Martinez and family, and physician James A. Brunetti, DO, will be honored at the annual Benefit for Greenwich Hospital. Former Today Show co-host and longtime Riverside resident Kathie Lee Gifford will serve as master of ceremonies and said "It is an honor to host the Benefit for Greenwich Hospital, an organization...there in our time of need." The event will be held on Friday, May 15, 2020 at Greenwich Country Club to benefit Neuroscience, Pediatrics and Women’s Health at the hospital. Arthur C. Martinez, former president and chief executive officer of Sears, Roebuck and Co. said "Nothing touches a community more than their health care." He also notes the hospitals affiliation with Yale New Have Health allowed it to compete with major academic medical centers with international reputations. Greenwich Hospital is a cause that Elizabeth Martinez has supported as well. She has
been a dedicated volunteer on hospital fundraising event committees. James A. Brunetti, DO, the other Benefit honoree, was destined to return to Greenwich as he was particularly impressed with the patient care and the state of the art technology. These values around patient care became a guiding principle in Dr. Brunetti's practice whether patients are seen in the hospital, home or nursing home. Norman G. Roth, President and CEO, Greenwich Hospital says “This year’s Benefit for Greenwich Hospital promises new beginnings for Neurosciences at the hospital, a field that is exploding with innovation and new discoveries; Pediatrics, where we are seeing significant growth; and Women’s Health, where our continued focus on early detection and prevention yield successful outcomes. Our honorees, Arthur, Liz and Jim have truly been partners over the years in the growth and success of Greenwich Hospital – we are delighted to celebrate them, and to celebrate our
community’s unwavering commitment to our hospital.” The Greenwich Hospital Benefit will help further fund a clinical growth plan inclusive equipment, technologies, physician specialists, medical facilities and research to ensure a level of care that is unsurpassed in the community. Support will directly enhance the areas of neuroscience, pediatrics and women’s health. This year marks new leadership for the Benefit Committee. Greenwich residents Jennifer Borzykowski, Lindsay Gurciullo and Lindsey Wilner Rudder, who have served on hospital event planning committees in the past, will be co-chairs of the 2020 Benefit. For more information about sponsorship and tickets, contact Stephanie Dunn Ashley, Director of Special Events, at (203) 8633865 or email events@GreenwichHospital.org
Additional information can be found on Greenwich Hospital Foundation’s website: http://giving.greenhosp.org/bene fit-2020.
Greenwich Hospital is a member of Yale New Haven Health. Greenwich is a 206-bed (includes 32 isolettes) community hospital serving lower Fairfield County. Connecticut and Westchester County, NY. COA It is a major academic affiliate of Yale School of Medicine. Since its founding in 1903, Greenwich Hospital has evolved into a progressive medical center and teaching institution representing all medical specialties and offering a wide range of medical surgical, diagnostic and wellness programs. Greenwich Hospital is recognized throughout the healthcare industry as a leader in service and patient satisfaction excellence. Greenwich Hospital has the prestigious Magnet designation from the American Nurses Credientialing Center, the nations's highest honor of nursing excellence. Greenwich Hospital Foundation is committed to securing the funds needed for the hospital to fulfill its mission of extending the highest quality of safe and compassionate healthcare to everyone in our region, regardless of their ability to pay.
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ANCHORS IN THE STORM By Maureen Fitzsimons
There’s a tempest in my brain.” I typed these words into my iPhone moments before I suffered a tonicclonic seizure, lost consciousness, and collapsed on an elliptical machine at the Equinox in Grand Central. I like to imagine it was a graceful fall, but based on the bruises that would later appear, I suppose it was rather inelegant. I came to as the ambulance doors swung open, letting in a cold rush of air that felt both sharp and invigorating. A paramedic wafted smelling salts beneath my nose as he peppered me with questions. What’s your name? Do you know what happened? Do you know where you are? I was able to answer two out of three before being wheeled into the harsh light and stagnant air of the Bellevue ER. I was awake. I was alert. I was alive. My head felt calm and clear, like the air after a storm has passed through. My older brother arrived almost immediately, having raced to my side from his midtown office. My parents followed shortly after, having rushed into the city from Westchester after receiving a call from my phone, expecting to hear my voice, but instead being informed by an EMT that I was unable to speak. My younger brother was initially unreachable at a work event. After a few tests and much waiting, with my parents by my side, a doctor with kind eyes and a gentle tone informed us that a CT scan had revealed a rather large mass in the left parietal lobe of my brain— most likely a glioma. As we began to absorb the weight of this information, an overzealous surgical resident chimed in declaring, “We cut to cure.” My parents’ eyes dilated with fear as they drew me closer. Brain surgery would be required but it wasn’t going to be performed by that guy.
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The diagnosis provided clarity and a course of action. It also brought appreciable relief. I had been silently suffering, living with a tempest in my brain for quite some time. Tired and wired, my mind was restless. It was as if my brain was always on but slightly off. Sleepless nights would lead to dazed and unproductive days. This neurological unease was relentless and I was growing distressed. It’s fitting that I collapsed on an elliptical machine. I had been eeking out an over-caffeinated, underwhelming existence, pedaling furiously but going nowhere. I couldn’t get off the ride. Until, finally, thankfully, the seizure knocked me out of the elliptical orbit I felt trapped in. Frankly, I was happy to hear that I had a brain tumor because it meant that I wasn’t losing my mind. It was a problem with a solution and I was eager to put this particular problem in the past. If only it were that simple. Two weeks later,as a light snow began to fall, and with my family by my side, I arrived at Memorial Sloan Kettering, ready to be prepped for brain surgery. In the days and weeks that followed, my family remained by my side. They showed up for me in the hospital and also in the aftermath, when I struggled with brain fog,cognitive issues, and crippling neurofatigue. They were there for me when the reality set in that the crisis had morphed into a chronic and uncertain condition. They supported me as I went through an intensive cognitive rehabilitation program and they consoled me when I learned that there was new growth at the tumor site-- this time growing more aggressively. They showed up for me when I underwent a second craniotomy and resection. Through chemo, radiation, and several subsequent setbacks, my family showed up for me. The only way out was through and they were by my side throughout the ordeal. From aimless confusion to alert acceptance, they were by my side. When I felt frustrated and directionless,adrift at sea, I was tethered by their consistent presence. They were, and are, my stability in tumultuous times. And they continue to support me, celebrating clean scans and good reports and remaining patient with me and what has felt at times like the glacial pace of healing. It has often been said that people might not remember what you said or what you did but they will never forget how you made them feel. In good times and in bad, in sickness and in health, in the chaos of an emergency room or in the calm but uneasy moments after a crisis, quietly and consistently, my family has always showed up for me. I may not recall exactly what they said or did in those moments, but I will never forget how their presence made me feel. In fiercely difficult times, when everything is uncertain, the one constant that I can rely on is my family’s presence. They are my anchors and my lifeline. Their support gave me the confidence to stand in the storm and have faith that the sun would shine again.information in the first paragraph or two. If the less vital details are pushed towards the end of the story, then the potentially destructive impact of draconian copy editing will be minimized.
ABOUT THE AUTHOR Maureen Fitzsimons
Maureen has recently started to write about her experiences since being diagnosed with a brain tumor in late 2010. You can floow her on Instagram @maureen_fitzsimons under the name Bright Side.
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THE ULTIMATE LIST OF
Y A D I L HO S T F GI
The holiday gift giving season can be stressful when you can't think of the right gift. Here is a list of gifts to help take the worry out of it and to put the thoughtfulness back into the gift giving. In fact, some of the best gifts don't even come in a box - they provide a feeling!
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1 THE GIFT OF SMILING TOGETHER Gather the family for a group photo and capture the loving bonds that are shared. Whether the photo be multi-generational, or simply with the special one you love, coordinate your wardrobe, pick the perfect setting, as well as the perfect photographer to snap the picture. Let Kristin Larsen Photography capture your moment. (914) 804-5482 kristinlarsenphotography.com.
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2 THE GIFT OF COMFORT For those who have loved and lost, Wearable Memories, is a collection of fine jewelry, designed to help you carry your loved ones with you. Hand-crafted and beautifully created, these necklaces and bracelets are designed to house a small portion of loved one's cremated remains, hair, or even drops of their favorite perfume/cologne. For more information, Jennifer Graziano, jennifer@coxeandgraziano.com.
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3 THE GIFT OF ORGANIZATION
Orderly Stuff specializes in helping senior citizens and their families get "stuff" in place. Getting organized after the death of a spouse, selling your home or apartment and organizing for the sale, as well as the move to the new location, and organizing paperwork for the preparation of estate planning and medicaid trusts. Half hour free consultation. One free when you purchase 10 hours. Nadine Viverito, Orderly Stuff LLC 768 Kimball Avenue Yonkers, NY 10704 (646) 369-8365 Nadine@orderlystuff.com
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T H E G I F T O F B E A U T Y A N D R E L A X A T I O N Visit Nancy, renown aesthetician now located at European Beauty Nail & Spa, 611 E. Boston Post Road, Mamaroneck. Treat someone you love to a signature facial or skin care treatment. (914) 630-1321 www.europeanbeauty.net
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THE GIFT OF LIFETIME MEMORIES Plan a trip where the whole family can experience adventure together. Whether a new destination awaits or an old favorite is revisited, there is no time like the present for a present such as this; Adriana Greco, Crossroads II Travel Inc., Larchmont, NY (914) 997-2660 www.cr2travel.com.
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THE GIFT OF FULFILLMENT Fill your heart and soul by remembering a special charity this holiday season. In thanks for the end of another year, consider a donation to organizations in need. ALS Organization, Greater NY Chapter visit them at www.als-ny.org.
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THE GIFT OF PEACE OF MIND Making an appointment with a trusted attorney is sometimes all you need for peace of mind and to know their future is secure. Specializing in elder law, estate planning, estate and trust administration, guardianship and special needs planning, Patty Bave and her team at KBO bring a holistic approach to elder law to address all their client's needs with compassion and competence. They can be reached at (914) 633-7400 or via email at pbave@kboattorneys.com or visit their website atwww.kboattorneys.com.
8 The Gift of Accomplishment The feeling of completing a workout is an amazing one. Out of breath - check, sweaty - check, realizing you can do this - nothing compares. Give the gift of a workout. A gym membership or a health/ personal trainer. She/He'll be glad you got them started.
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THE FAMILY AND THE FACILITY THAT WESTCHESTER HAS TRUSTED FOR MORE THAN 30 YEARS WHEN IT COMES TIME TO FACE LIFE’S MOST DIFFICULT MOMENTS. FAMILIES HAVE TRAVELED THE EXTRA MILE TO CALL UPON US, KNOWING FULL WELL WE WILL DO THE SAME FOR THEM.
767 E. Boston Post Road Mamaroneck, NY 10543 (914) 698-5968
134 Hamilton Avenue Greenwich, CT 06830 (203) 869-5968