Caring for the Care Giver

1. Caring for the Care Giver Paul Rozynes, MD. Medical Director Broward Program VITAS Hospice

2. 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.

3. 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 individual’s 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.

4. 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.

5. 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.

6. Challenges? Certain medical situations offer a challenge, such as: Alzheimer’s Disease Patients with Respiratory Distress (i.e. COPD or CHF) Cancer Patients Patients with Neurological Disorders (CVA, Parkinson’s, Multiple Sclerosis, ALS)

7. Alzheimer’s 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.

8. Alzheimer’s Disease Caring for a person with Alzheimer’s 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)

9. 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.)

10. Cancer Patients Need for pain management Laxatives Nutritional concerns Functional decline

11. Patients with Neurological Disorders Hospital bed Oxygen Wound care Asphyxiation precautions

12. Caregiver Stress Caregiver burnout occurs when our body, mind, and spirit tell us to “stop putting everyone else’s 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 doesn’t go away by itself.

13. Care Giver Secondary Stressors Family and role conflicts Work conflicts Financial strain

14. Symptoms of Caregiver Burnout Depression Withdrawal/ less communication Alienation Impatience Irritability Fatigue Loss productivity Loss of purpose or meaning Low self-esteem

15. 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)

16. Causes of Caregiver Burnout Changing roles Unrealistic expectations (for the caregiver or others) Loss of control Isolation Financial demands Panic Denial

17. 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

18. Healing Strategies Daily exercise Mediation Listening to music Taking a hot bath Getting a message Practice stress management techniques

19. 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.

20. 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 recipient’s 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.

21. 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.

22. End-Stage Care Giving Characteristics Comprehension of terminality Near-acute care Executive functioning Final decision making

23. 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.

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

25. Executive Functioning Concerns the way the care giver has upheld the patient’s 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.

26. 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).

27. 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 Doctor’s office, provides education as well as emotional support.

28. 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 patient’s care giver will be visited by the two team RN as well as more frequent visits by the Chaplain and social services.

29. 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.