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Supporting Family Members and Caregivers

Losing a loved one is one of the most difficult experiences in life. Family members are not always prepared to serve as primary caregivers or to address the symptoms that occur throughout the dying process while also coping with the emotional burden of losing a loved one. This chapter addresses the needs of family members.

After reading this chapter, you will be able to:

In the last days and hours of life, patients experience physical, psychosocial, and spiritual changes that indicate approaching death. These changes should be assessed frequently and documented regularly. Signs of approaching death include:

■  Decreased desire for food and fluids

■  Increased sleep leading to unresponsiveness

■  Confusion

■  Cyanosis of extremities

■  Terminal secretions (death rattle)

■  Visions or dreams of loved ones who have already died
(Kehl & Kowalkowski, 2012; Kerr et al., 2014)

Fast Facts in a Nutshell

Families providing care for dying patients often need support and teaching regarding the signs of approaching death. Common symptoms, such as decreased appetite and increased sleeping, can be very distressing to families. Because the family and the patient are the unit of care in hospice, nurses should clearly explain changes as they occur and teach families the meaning of these changes.

When a patient experiences distressing symptoms, it is stressful for the caregivers. The caregivers’ responses to these changes should be carefully assessed and addressed. Patient symptoms that are most distressing to family caregivers include:

■  Pain

■  Lack of appetite

■  Weight loss

■  Worrying

■  Sadness

■  Irritability

■  Insomnia

(Ratkowski, Washington, Craig, & Albright, 2015)

Providing around-the-clock care for a terminally ill loved one is challenging because caregivers are often untrained in providing care and assessing and managing symptoms. Faced with the impending loss of a loved one while also managing physical care, caregivers may experience feelings of uncertainty and grief (D’Antonio, 2014).

According to The Cleveland Clinic Foundation (2012), signs of caregiver fatigue can mimic depression and may include:

■  Social withdrawal

■  Changes in appetite

■  Feelings of hopelessness and helplessness

■  Irritability

■  Frequent illness

■  Feelings of wanting to harm self or others

If a caregiver is manifesting signs of caregiver fatigue/caregiver burnout, the hospice nurse should work closely with all members of the interdisciplinary team, especially the social worker and chaplain, to make plans for the provision of appropriate support.

Cloyes et al. (2014) noted in a recent study that caregivers feel most supported by hospice nurses when nurses:

■  Affirm the primacy of the caregiver’s role

■  Consistently impart accurate and useful information about hospice services, specific skills or interventions, and the role of the interdisciplinary team

■  Establish a trusting relationship with the caregiver

■  Demonstrate respect for the caregiver’s knowledge about the patient’s preferences and the patient’s condition

In addition to actively providing support for the patient and caregiver(s), and working closely with the interdisciplinary team, the hospice nurse should determine if respite care is appropriate to provide the caregiver with some time to rejuvenate. Some families may also consider hiring privately paid caregivers to ease the burden of providing care on their own. As in any other setting, if the hospice nurse suspects that the stress of caregiving is leading to abuse, appropriate actions must be taken.

CONCLUSION

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