By Rona S. Bartelstone, MSW, LCSW, BCD, CMC
CEO, Rona Bartelstone Associates, Inc.
Care Management is probably the most holistic and
consumer centered approach to the provision of
services for frail and vulnerable populations.
Care Management is a process that looks at medical,
social, emotional, spiritual, safety and functional
needs of an individual and his/her family and
support systems. The provision of services to
meet some of these needs may come from a variety of
professionals, but the care manager is the key to
understanding, accessing and coordinating those
services that best meet the needs of the consumer.
Because the Care Manager has experience in the
complex tasks of assessing, organizing,
facilitating, advocating and quality assuring the
services provided, s/he is expected to have the
ability to objectively understand the various
systems’ needs and requirements. S/he is also
expected to understand personal and professional
boundaries and the most appropriate therapeutic
techniques. This central, objective role
enables advocacy and an interdisciplinary
collaboration that is based upon the understanding
of the different responsibilities of each member of
the service delivery team and the consumer.
So what happens when the professional Care
Manager becomes a family caregiver and is acting on
behalf of his/her own family system? This
presents many issues around objectivity, role and
boundary definition, use of self and the emotional
aspects of caregiving. This is a concern that
I encountered, when after thirty years as a
professional caregiver, I found myself caring for a
father with cancer, a mother with mild cognitive
impairment and a husband who had suffered a stroke.
I found myself in unfamiliar territory in terms of
emotional coping and my role within the healthcare
system, when it came to my own family.
Good News/Bad News
Like most human endeavors, things are often not
clear cut for the “proffamily” (a term I coined to
describe my role as the professional caregiver
turned family caregiver) caregiver. As we move
into the role of family caregiver, there are several
unique challenges to our professionalism and our
most intimate and loving relationships. Many
of these challenges are double edged swords for the
professional who has both experience and knowledge
of resources, but who can no longer claim the
objectivity and boundaries that are expected in the
work role. This can create a role dissonance
and challenge our professionalism.
1. Resource and Health Knowledge
When you have a lot of knowledge and experience
in working with health and social problems, it helps
by enabling you to have many more resources, more
immediately available than lay families. On
the other hand, knowing the trajectory of a disease
process, the side effects of treatments, the nature
of, or limitations to recovery can be a very
challenging prospect for the “proffamily” caregiver,
who doesn’t get the “luxury” of learning to live
with the illness and its impact over time.
For example, when my mother was diagnosed with
Mild Cognitive Impairment, I immediately saw the
nature of our future together and began to
experience the grief and sadness that many families
don’t face until much further into the disease
process. This makes it hard to stay in the
moment and deal with the current situation without
anticipating the future too much. Moving
immediately into the later stages of the disease
process in thought and feeling can lead to excess
disability. The ability to balance present and
future concerns, the lifetime of relationship issues
(both positive and negative), and the immediate care
needs can be a challenge for the professional who
“knows too much.”
2. Accessing & Managing Systems
On the other hand, knowing the health and social
service delivery systems is a strength that the
“proffamily” caregiver can call upon to assure
access to the most appropriate services in an
efficient manner. This provides a sense of
control, confidence and self esteem, in the midst of
the crisis.
Knowledge of how different systems function
enables the “proffamily” caregiver to manage the
system to assure that our loved ones receive
appropriate care. This can include the ability
to assure second opinions, specialty consults,
appropriate discharge planning and timing, and the
implementation and coordination of home and
community based care services, for example.
At the same time, being a professional caregiver
does not make us immune to health and social service
delivery problems. However, as the consumer it is
difficult for the “proffamily” caregiver not to feel
responsible for the deficits of the system.
This can be especially true if our own service
delivery system is proven deficient in some way.
It can be difficult to acknowledge to our loved ones
and ourselves that even we cannot “fix” the system,
though that may have been our goal in becoming a
professional caregiver. This certainly
challenged my role as the family “health care
expert” when dealing with situations that are
engrained in the fractured delivery system.
3. Advocacy
& Health Education
Advocacy and education is also a role in which
the “proffamily” caregiver can demonstrate skill and
feel a sense of mastery. Despite the
proliferation of health information and the
emergence of consumer directed care concepts, it is
still very difficult for the health community to
adequately communicate the nature of health issues,
the variety of treatment options, and the
consequences of the various options. This is
especially true when dealing with complex, systemic
health care treatments. By attending physician
visits, reviewing charts, assuring communication
among doctors and other related professionals, and
asking probing questions about treatment the
“proffamily” caregiver can bring a comprehensive and
understandable approach to treatment.
Likewise, as a family member acting in the role of
care manager, even asking the “right” questions is
often a critical component for enabling healthy
coping with catastrophic situations.
4. Role dissonance & Loss of
control
One of the most challenging parts of being a
“proffamily” caregiver is the role dissonance that
arises when the care need is personalized. I
vividly remember my own feelings of helplessness and
fear while I sat with my husband in the hospital
after his stroke. I felt that I had to
“behave” or the hospital staff would find me to be
an imposition and my husband’s care would be
adversely affected. Finding the appropriate
balance between advocacy and intrusion is not easy
when the wound is so raw and intense. I felt
that I was in a position that was so
uncharacteristic for me and so lacking in control,
that it was a most uncomfortable experience. And
while I felt this most acutely in this particular
situation, it remains a constant theme throughout
the course of my caregiving responsibilities.
5. Grieving/sadness vs. task orientation
One of the realizations that came to me in my
role as “proffamily” caregiver for both parents is
that I had to compartmentalize my grief in order to
stay task oriented. In other words, my grief would
often be put on the back burner to enable me to get
through the variety of tasks related to parent care.
This compartmentalization further necessitated that
when I was not with my parents that I pay attention
to my grief and sadness and honor it by giving
myself time to feel. By periodically embracing my
grief and allowing its expression, I found that I
was able to get back to the tasks at hand.
Anticipatory grief, forgiveness work and learning
acceptance can be a powerful experience that
enhances our ability to give care to family, self
and others. “Proffamily” caregivers are in a
unique position to understand this and to address
it.
Conclusion
While “proffamily” caregivers certainly do not
have a monopoly on conflicted feelings at the time
of an existential crisis, I do believe that we come
to it and work through it with a special
constellation of issues. Being able to set
appropriate boundaries and ensure self-care is
critical for “proffamily” caregivers, who are often
more used to giving than receiving. Therefore,
it is imperative to allow ourselves the opportunity
to reach out to our closest support systems and to
let them take care of us. I know that this is
a huge challenge, but it can also be immensely
gratifying when we let others return the love that
they feel for us.
Our unique knowledge and experience can
facilitate or inhibit our ability to make conscious
choices about how we use ourselves in our caregiving
role. When we choose to let our background
facilitate the best use of self, we can experience
the entire process of caregiving in a way that turns
burdens into blessings. We can further our
self actualization with a sense of purpose, dignity
and grace that creates growth as a professional, as
well.
Rona S. Bartelstone, LCSW, BCD, CMC, C-ASWCM,
is Senior Vice President of Care Management at
Senior Bridge. She has worked in eldercare for more
than 35 years. During this time, she had her own
care management and homecare company, Rona
Bartelstone Associates, from 1981–2008. Rona has
taught at Nova University in their Masters Degree
Gerontology Program, and at FL International
University, Graduate School of Social Work on
Geriatric Care Management. Rona is a also family
caregiver for members of her immediate family across
three generations.
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