Caring for the Care Giver

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Caring for the Care Giver

• Paul Rozynes, MD.
• Medical Director
• Broward Program
• VITAS Hospice

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Care Giver

• A person who cares for a debilitated individual.
• Can be a family member.
• A hired individual
• A medical professional
• Such as a licensed or registered nurse or Home
  Health Aid or Physician
• A friend or family member
• The care giver can be from a private agency or
  privately employed by the dependent person.

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Care Giver

• The care giver usually provides service in a home
  setting, although occasionally the caregiver may
  be needed in an ALF or Nursing Home if adequate
  help cannot be provided by the facility.
• An individuals degree of disability dictates the
  intensity of service required. Safety issues are
  of utmost concern to prevent falls, fractures,
  trauma, asphyxiation, respiratory distress,
  congestion and emotional distress.

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Care Giver

• The care giver may need to also support the
  patient by preparing and feeding the patient,
  providing bathroom or toilette opportunities, to
  turn the patient to prevent wounds, and to help
  dress the dependent individual.

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Care Giver

• In the event of a crisis such as a fire or a
  storm, the dependent individual may to be
  evacuated from his or her premise by the care
  giver.
• The care giver may need to contact medical
  personal, bring the dependent individual to a
  physician or dentist, provide transportation, and
  get medication supplies and food.

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Challenges?

• Certain medical situations offer a challenge,
  such as
• Alzheimers Disease
• Patients with Respiratory Distress (i.e. COPD or
  CHF)
• Cancer Patients
• Patients with Neurological Disorders (CVA,
  Parkinsons, Multiple Sclerosis, ALS)

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Alzheimers Disease

• Care is provided mostly be family members
• Caregivers usually receive no professional
  assistance.
• Family members usually work as caregivers for an
  average of 20 hours per week.
• Many caregivers also have part time or full time
  paying jobs.
• Lack of guidance in how to care for an
  Alzheimer's patient.

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Alzheimers Disease

• Caring for a person with Alzheimers Disease is
  very difficult do to the nature of the disease.
• Forgetfulness
• Functional decline- ADL assist
• Psychosis and agitation
• Weight loss
• Restlessness and insomnia
• Wounds
• Anorexia
• Need for special equipment
• Safety precaution and fall precaution
• Difficulty in making needs known (i.e. Confusion,
  memory fluctuation , repeated words)

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Patients with Respiratory Distress

• Need for oxygen and cardiac or pulmonary
  medication.
• Activity is limited due to shortness of breath or
• Weight loss and nutritional factors
• Need for special equipment (i.e. BPAP, oxygen,
  jet nebulizer, wheelchair, walker , bedside
  commode.)

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Cancer Patients

• Need for pain management
• Laxatives
• Nutritional concerns
• Functional decline

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Patients with Neurological Disorders

• Hospital bed
• Oxygen
• Wound care
• Asphyxiation precautions

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Caregiver Stress

• Caregiver burnout occurs when our body, mind, and
  spirit tell us to stop putting everyone elses
  needs first. It is character, fed physical,
  mental, and emotional exhaustion
• It leaves people felling overwhelmed, trapped,
  irritable, negative, disillusioned, and totally
  used up.
• Burnout diminishes self-esteem and results in a
  loss of zeal. Burnout is a process rather then an
  event. It can be healed, but it doesnt go away
  by itself.

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Care Giver Secondary Stressors

• Family and role conflicts
• Work conflicts
• Financial strain

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Symptoms of Caregiver Burnout

• Depression
• Withdrawal/ less communication
• Alienation
• Impatience
• Irritability
• Fatigue
• Loss productivity
• Loss of purpose or meaning
• Low self-esteem

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Symptoms of Caregiver Burnout

• Negative emotion (anger, frustration, quilt,
  resentment, fear, loneliness, hopelessness)
• Sensitivity to criticism
• Sleep disturbance
• Changes in appetite
• Fewer wants
• Psychosomatic illness and symptoms (i.e. pain and
  muscle tension)

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Causes of Caregiver Burnout

• Changing roles
• Unrealistic expectations (for the caregiver or
  others)
• Loss of control
• Isolation
• Financial demands
• Panic
• Denial

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Ways to Prevent Burnout

• Exercise regularly
• Rest
• Relax (pursue an interest, spend time with family
  and friends)
• Eat healthy food
• Identify negative emotions and practice coping
  skills
• Seek support from family, friends, a support
  group or counselor
• Learn to be assertive
• Ask for help from people who are realistically
  able to give help
• Accept help when offered
• Do good things for your spirit

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Healing Strategies

• Daily exercise
• Mediation
• Listening to music
• Taking a hot bath
• Getting a message
• Practice stress management techniques

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Family Care Giving at the End of Life

• The Hospice patient provides the care giver with
  unusual challenges.
• The Hospice patient is facing death.
• Sometimes the death is imminent. The caregiver is
  aware of this and must adjust accordingly.

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The Essential Stages of Care Giving for a Hospice
Patient

• Stage 1 Role acquisition, which is often an
  insidious process precipitated by onset of the
  illness and the care recipients need.
• Stage 2 Role enactment, which is role-related
  tasks within the home or in an institution (e.g.
  a nursing home)
• Stage 3 Role disengagement, whish follows death
  and typically involves bereavement and recovery.

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The Essential Stages of Care Giving for a Hospice
Patient

• Each of the stages presents its distinct source
  of stress.
• The care giver can pass through each of the
  stages rapidly.
• It is within the roles enactment stage (stage 2)
  that most care givers are likely to interact with
  and seek support from health care and social
  service provides.

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End-Stage Care Giving Characteristics

• Comprehension of terminality
• Near-acute care
• Executive functioning
• Final decision making

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Comprehension of Terminality

• The care giver recognize that the family member
  or recipient is dying.
• There is recognition that death is an inevitable
  outcome of illness.
• The care giver sees the patient declining,
  physically, and mentally.
• The care giver is taught or given information
  regarding the changes at the end of life.

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Near-acute Care

• Characterizes the intense management required
  during the patients physical decline during the
  final stages of a terminal illness.
• It includes hands-on care (e.g. managing the
  patients medications, assisting with ambulation
  and transfers from bed to chair.)

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Executive Functioning

• Concerns the way the care giver has upheld the
  patients wishes.
• Examples include paying bills and making
  purchases to assure patient comfort.
• The degree of involvement of the care giver
  depends upon the condition of the patient.

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Final Decision Making

• Involves last minute or urgent decisions made by
  the care giver usually on an urgent basis.
• This includes whether to hospitalize the patient,
  funeral arrangements and discussions (i.e. DNR or
  wills).

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VITAS Hospice

• Provides a great opportunity to support the care
  giver during the end of life process.
• RN visits to the home allows teaching the care
  givers medication administration, safety
  precautions, asphyxiation precautions and
  pressure sore prevention.
• CNA visits allow care giver help with personal
  care for the patient.
• Chaplain visits provide spiritual support and
  direction to the care giver as well as the
  patient.
• Social service visits can give the care giver
  direction in terms of family interactions,
  support groups, financial services, placement
  issues, and funeral home arrangements.
• The Physician can visit the patient and care
  giver at home, which avoids a lengthy visit to a
  Doctors office, provides education as well as
  emotional support.

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VITAS Hospice

• Crisis care (continuous care) relieves the care
  giver of all nursing duties during the dying
  process and allows the caregiver to concentrate
  on emotional issues and family issues related to
  the dying process.
• While on crisis care, the patient and patients
  care giver will be visited by the two team RN as
  well as more frequent visits by the Chaplain and
  social services.

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VITAS Hospice

• As you can see, Vitas Hospice is well aware of
  the stress placed upon the care giver, and the
  Hospice staff make every effort to help the care
  giver cope with the extra burden of care giving
  to a dying patient.