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Who’s in Charge? The Circle of Care Philosophy
Who's Really in Charge
Alzheimer's Association's Gold Coast Memory Walk 2008
Who’s in Charge? The Circle of Care Philosophy
by Rona S. Bartelstone, LCSW, BCD, CMC, C-ASWCM
This is an important question that professionals are always confronting when we are working with people with chronic disabilities, age related health issues and family members.
Increasingly, this is an important policy question as we begin the discussion of health care reform, funding for long term care, and the role of the various health and social service organizations that provide long term support for our aging population.
The answers don’t come easily when there are conflicting interests among providers and family members, questions of capacity to understand options and make decisions, the ever present issues of funding and even survival. Survival issues relate both to the microcosm of the individual, but also to the larger systems of the family, the medical providers and the community based health and social service providers. This is huge.
At Rona Bartelstone Care Management & Home Healthcare we have a philosophy of care that helps us to begin to cope with and address these issues. We don’t pretend to have all of the solutions, but perhaps by examining an approach we can begin to fashion concepts that would serve our systems and consumers in a healthier way. After all, isn’t that what caregiving and the discipline of care management is all about?
Here is our philosophy in a nutshell:
- We call it the circle of caring. The care recipient needs to be cocooned in a support system that enables them to be safe, while addressing the medical, social, emotional, and spiritual needs that they have, in whatever setting is most appropriate for them, and that is consistent with their lifestyle preferences and resources.
- The care recipient and the family/support system need to have someone who can help to educate them about the issues they are facing, the options for care, the questions to ask and the resources that will support their goals. In our case this is the care manager who is a highly trained/skilled social worker or nurse. We work in a multidisciplinary team to assure that all of the biopsychosocial issues are being appropriately addressed.
- There needs to be open communication among the variety of medical specialists, in order to coordinate treatments and medications across settings. In the ideal world the primary care physician would be paid for this role. In our world, it is again the care manager who provides this information to the physicians, therapists, home health agencies, rehabs, day cares and others who are involved with the care recipient.
- We encourage all families to have a dialogue about the planning for long term care concerns and specifically addressing the wants and desires of each family member as a potential care recipient. This means asking about planning documents such as durable powers of attorney for both health care and finances; understanding the wishes of each person for end of life care with written or video taped documentation; discussing the availability of long term care insurance or other assets to pay for the support needed, or a discussion about what it would mean to apply for public benefits such as Medicaid.
- From the beginning of our involvement with care recipients, we attempt to understand their goals for their own care.; We attempt to help create opportunities for discussion about prior relationships, so that we can understand the real and potential conflicts among family and paid caregivers. All of this is for the purpose of anticipating how we can provide the best care and make the best match of the care recipient with the care giver.
- An advocate needs to accompany each person when they enter the role of “patient” to assure that medical providers know the concerns of the individual and family; hear the explanations of diagnoses and treatment options; ask questions about alternatives and outcomes; and help with the decision making about potential treatments. This is often a family member and/or the care manager.
- The same advocate needs to be able to share information across the boundaries of all agencies, service providers and others who are helping to support the care recipient to ensure a consistent understanding of the needs and the care plan. This includes informal and formal caregivers, community services, residential facility staff and others who have a legitimate reason to know about the plan for the care recipient. Each member of this team needs to understand the plan, so that they can provide consistent support to the care recipient.
- The emotional and spiritual needs of the care recipient and others in the caregiving system need to be addressed. Living with chronic health concerns presents challenges and opportunities for dealing with issues of conflict resolution, forgiveness, sibling rivalries, jealousies, competition and healing. This will diminish incidents of depression and help people to feel more empowered over the important issues and relationships in their lives.
- All caregivers need to have support, encouragement, validation and education. Even when we choose to participate in caregiving activities, it can be emotionally and physically exhausting. Therefore, caregivers need to have a support system that includes professionals, family and friends to help them through the process and to avoid the excess disability of caregiver burnout and disease.
- By having a team approach to caregiving with the care recipient as the driving force in the decisions that get made, it is possible to improve the delivery of care. This consumer centered model can exist with the proper supports and with the realignment of the health and social service delivery systems.
For those who can’t wait for healthcare reform, we hope that you will contact Rona Bartelstone Care Management & Home Healthcare to learn more about how we can help you overcome the challenges and boundaries of the caregiving role.
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Who's Really in Charge
by Sandra Goldberg, RN
Mrs. Crass was always very critical and opinionated. She had no friends and her family was afraid to have her around because she could make a scene. The family tried to help by hiring aides to assist her, but she refused to accept help and ended up alone.
Out of desperation the family called Rona Bartelstone Care Management when they couldn’t manage her or her care and they were concerned about her health. When a crisis arose, they realized that they needed help to assure that their mother received proper care, despite her coarse personality. When she was admitted to the hospital a Care Manager was assigned who was also a nurse. Mrs. Crass liked the fact that Sandy Goldberg, the Care Manager was also a nurse. Mrs. Crass liked the Care Manager and allowed her to come on a regular basis. The Care Manager was concerned about Mrs. Crass’ emotional well-being, so she arranged to have her see a psychiatrist. Because there were multiple health complications, it took time to find the best combinations of medications that would enable her to feel better. For a time, Mrs. Crass was doing well and was getting along with her aide.
After a period of stability, Mrs. Crass wasn’t feeling well again. During another hospitalization it was discovered that she had several new and complicating medical concerns, including anemia and poor circulation that resulted in wounds that required frequent treatments. As a result of this new situation, Mrs. C needed to go to a rehabilitation facility for daily care. She remained in the rehab facility and eventually became a permanent full time resident. At this time, she seemed to make a good adjustment to the new environment. Although she wasn’t happy with her health changes, Mrs. Crass managed to make several new acquaintances, and to enjoy participating in activities with the other residents.
As the circulation in her feet got worse, she was in increasing amounts of pain that led to increased depression. She was not a candidate for surgery because of the complications of her many health problems. When the pain became unbearable, Mrs. Crass decided that she didn’t want to live this way, so she stopped taking her medications, including her antibiotics and anti-depressants. She also refused to eat or consume fluids. She was given temporary IV’s for hydration to determine if she could experience some relief and because her family was distressed at her wanting to die.
At this point, her family became more involved with calls and visits. She was very happy for their attention but she decided that now was the time for her to be in charge of her final decisions. Over the next few weeks her grandchildren, children, in-laws and other family visited Mrs. Crass. She waited until her last son, who was out of the country, came to visit and within hours of his visit she died.
Mrs. Crass spent most of her life feeling that she was out of control. She never realized that her difficult behavior drove away family and friends. But when it came to deciding how to live and die at the end of her life, she took control. She gave herself and her family the opportunity for good-byes and some healing before she let go at the time of her choosing. Now everyone realizes who was really in charge!
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Alzheimer's Association's Gold Coast Memory Walk 2008
Rona Bartelstone Care Management & Home Healthcare help to make the Alzheimer’s Walk a huge success!
With contributions from over 65 staff members, family and friends, we reached our goal of matching and exceeding our $1,000.00 corporate contribution. We had the honor of leading the walk because of our team effort.
The day was perfect – a walk at the beach, great company, music and bubbles. What a way to defeat Alzheimer’s Disease! Click here to view slideshow
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