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The Professional Care Manager As A
Family Caregiver: Unique Challenges

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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