“Let whoever is in charge keep this
simple question in her head: not, how can I always do this right thing myself,
but how can I provide for this right thing to be always done?”
Emperor Marcus Aurelius
is one of my favorite authors. Living during a time when the world was
constantly at war, disease was rampant, and there was a great deal of human
suffering, the Emperor, a stoic, believed in self-restraint. He also lived with
the knowledge that the decisions he made would impact the lives of millions of
people.
Marcus Aurelius firmly
believed that wisdom was obtained by examining oneself, so he took time to
journal his private thoughts each night as a method of personal improvement.
His philosophical reflections were never intended to be shared with the public;
rather, they were his true and visceral responses to what he was experiencing,
and a free expression of frustrations associated with the challenges he faced
daily as a person with many flaws.
His once-private
meditations continue to be relevant to coping with challenges we humans
encounter two thousand years later. Marcus Aurelius did not set out to be an
author, yet his published works highlight the importance of sharing your
wisdom.
In How to Manage Nursing Care at Home, authors Douglas Winslow Cooper
and Diane R. Beggin, address one of the most complex global issues faced in the
21st century: caring for someone you love, one who is also diagnosed
with a severe medical condition, doing this safely, and in the home.
The truth is that there
is no easy way to address the immense fiscal and logistical barriers that must
be considered as you take on the responsibility for providing nursing-level
care at home. I can personally attest to the challenges associated with
ensuring that a loved one safely receives full-time complex medical care–24
hours a day, seven days a week–for an indefinite period of time.
As a registered nurse
and the co-founder of Caregiver Support Services, a non-profit organization
that exists to improve the health and wellbeing of both family and professional
caregivers, I have dedicated my life to improving the circumstances of the
elderly and their caregivers.
I am also a caregiver
for my mother-in-law, Emma. Earlier this year, she was infected with a virulent
strain of influenza, was placed on a ventilator, went into a medically induced
a coma, and suffered a stroke. We didn’t know if she would survive. Mom has
since transitioned to a rehabilitation center to receive therapy, but our goal
is to bring her home.
A major barrier to
Mom’s transition to home is coordinating the complex care that she needs. One of our biggest concerns is that Mom wakes
up three or more times each night to urinate, but she can’t remember that she
is unable to walk to the bathroom safely on her own. So, when she tries to
stand up from bed, she often falls. In fact, my husband and I receive a call
from the rehab center once or twice a week reporting that Mom has fallen. This
repetitive circumstance is heartbreaking.
Waking up multiple
times a night has led to decreased daytime functioning for Mom, and even more
concerning, to anxiety and depression. These additional issues have made it
extremely challenging to engage her in the recovery therapies necessary for her
to return home. In fact, we meet regularly with the staff and the doctors to
modify her anxiety and depression medications to help her achieve the highest level
of functioning.
We want to bring Mom
home, but we are physically and emotionally overwhelmed. Our biggest concern is
pulling together everything needed to make the transition safely. In fact, just
the thought of trying to figure out where to start to gather the resources that
we will need to bring her home has been downright stressful. This book
addresses such issues.
Dr. Cooper includes
firsthand experiences associated with caring for his wife, Tina, who is quadriplegic,
on a ventilator, and suffers from multiple sclerosis. Together they have
overcome tremendous obstacles, yet because of Dr. Cooper’s advocacy and with
the help of her head nurse, Diane R. Beggin, Tina is lovingly being cared for
in her home.
What likely began as a
way to cope and to document his very personal experience with caring for Tina
has been nurtured and is now a valuable guide that will ease your worry as you
begin your journey as one of the millions of untrained family caregivers who
want to safely provide complex medical care services so that your loved one can
remain home.
I know that this text
has helped my family with starting the process to bring Mom home. In fact,
these distinguished authors go a step further than most books written about
caregiving, as they address both the emotional and navigational aspects of
caring for someone you love.
I am honored to have
gotten to know Tina, Dr. Cooper, and Tina’s nurse, Diane Beggin, through
reading their very personal experience of providing complex care in the home.
Like Marcus Aurelius, the authors of this important work have openly shared
their wisdom so that you do not have to face the immense challenges associated
with caregiving alone.
I leave you with this
final thought,
Knowledge comes, but wisdom lingers. It may not be difficult to store up in
the mind a vast quantity of facts within a comparatively short time, but the
ability to form judgments requires the severe discipline of hard work and the
tempering heat of experience and maturity.2
The care of your loved
one will require planning and the continuous acquisition of knowledge to ensure
all needs are being met, including your own.
Juggling all of the challenges will likely be difficult, yet this useful
contribution to caregiving highlights your intangible contributions as a part
of the healthcare infrastructure.
I hope that you will
take advantage of the wisdom shared in the pages that follow, that you are
empowered to use this material to make your life easier, and that you continue
to seek additional learning opportunities as your caregiving situation changes.
Eboni I. Green, PhD, RN
Co-Founder of Caregiver Support Services
1Florence Nightingale. Retrieved on October 17,
2016 from http://www.goodreads.com/author/quotes/63031.Florence_Nightingale
2Calvin Coolidge. BrainyQuote.com, Xplore Inc., 2016.
https://www.brainyquote.com/quotes/quotes/c/calvincool156506.html, accessed
October 24, 2016.
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