Barbara's Blog

The Invisible Family Caregiver

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Too often, caregivers, already reeling from a parent’s recent health crisis, are simply handed written medical instructions, new prescriptions, a car load of medical equipment, and sent on their way.  They are offered no training, no one asks if they are prepared for their new assignment, or how they are doing emotionally.  They are often not even asked their name.  These family caregivers are expected to go home with their parent and proficiently perform tasks nurses and doctors spend years in monitored training learning to perform.  In addition, these caregivers are also often managing bathing, lifting, transportation, bill paying, shopping, feeding, etc., all with a strong emotional attachment to the patient.

My sister volunteered to care for her dear friend who needed a great deal of physical assistance, including help transferring her body from place to place.  My sister received NO training in the proper methods for lifting or transferring patients.  She actually broke her back helping her friend.  My sister’s life has been permanently changed as a result of that injury.

Too often, caregivers are seen by the medical community as “the wife”, “the son”, “the daughter”, “the friend”, and they remain this invisible party until a serious medical decision is to be made or it is time to discharge the patient. Rarely, if ever, do they hear the question, “How are YOU doing?”

Lack of caregiver attention can result in poor care for the patient, and the stress of the experience can even turn the caregiver into a patient themselves. Fortunately, things are changing.  Two major initiatives have taken place to move the medical community toward providing more support for caregivers.

In 2010, the National Association of Social Workers (NASW) Standards for Social Work Practice with Family Caregivers of Older Adults released new standards “to promote social work support for family caregivers across care settings.”  A primary goal of these standards are to give “attention to the contributions, strengths, needs, and goals of family caregivers.”

In 2011, the AARP Foundation, in partnership with American Journal of Nursing and New York University/Hartford Institute for Geriatric Nursing’s Nurses Improving Care for Healthsystem Elders program, began to develop a web-based tool kit to train nurses.  The tool kit focuses on the themes of assessing the needs of the family caregiver, communicating with family caregivers as partners in care, and principles and practices for teaching health care tasks to family caregivers.

The combined impact of these two changes will significantly affect the level of support and recognition caregivers receive from the medical community.  Positively supported caregivers are better positioned to provide excellent care to their family members.  Everybody wins.

*Lifting the Cloak of Invisibility: Nurses and Social Workers Supporting Family Caregivers. Extract from the AARP The Journal Summer 2011

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