When loved ones die, we expect family members, especially those who were their caregivers, to go through a grieving process. Because professional caregivers are paid for what they do, we don’t always realize that they may have a similar need to process their grief when a client dies or leaves their care for some other reason. As home caregivers and families who employ them, it’s important to acknowledge this grief and find ways to deal with it. Otherwise, it could build up to the point of “bereavement overload,” or the effect of multiple losses with little time in between for a grieving process. In one study of professional caregivers in a long-term care program, 72 percent of the caregivers were experiencing grief symptoms.
The New York Times highlighted this issue in their article On Home Aides and Hidden Grief. Professional caregivers often build a strong relationship with clients, as they work with them over time. This is one of the great things about working as a home caregiver. Though the relationship is a professional one, it is normal to have feelings of attachment. Families want to hire caregivers who will treat their elderly clients like family. That sort of intimacy means that caregivers, too, will ache when the people they’ve grown close to are no longer in their care.
There need not be a death for a caregiver to experience grief. “Anticipatory grief” begins before the person has died, but the emotions—anxiety, anger, dread, sadness—can be similar. When a family member of a client who has an injury, condition or disease like Alzheimer’s that progressively changes their personality, the grief may come from realizing that the person, as they knew them, will be “gone” even before they die.
Family caregivers may also feel loss of their independence and freedom, as much of their time and energy is now going to someone else who needs them. It is normal to feel guilt, anger, bitterness and resentment as one comes to terms with the fact that you can’t change the outcome of the disease and that the life you had won’t be coming back.
Sometimes a caregiver feels a sense of relief when a client dies. They’ve witnessed the struggle and discomfort their client suffered. Positive grief is not the only result of an anticipated death. In fact, it has been noted that 10-20 percent of caregivers experience high stress, while 30 percent are at high risk of clinical depression when their client passes. Caregivers can experience “complicated grief” that has an abnormal reaction time, is suppressed or postponed. In fact, for 20 percent of caregivers, this occurs a year after the death.
Characteristics of professional grief include:
- The effects of are hidden and subtle
- Professional losses accumulate
- It may appear as other emotions such as anger, anxiety, blame, helplessness, and guilt
- It may have a chronic or delayed response — one that never comes to a satisfactory conclusion
- It is a significant cause of caregiver burnout.
Grief and Caregiver Burnout
When grief-producing experiences are layered one on top of another and there is no release for emotions, caregiver burnout can be the result. Symptoms of caregiver burnout can include:
- Withdrawal from friends & family
- Loss of interest in activities
- Feeling sad, irritable, angry, hopeless, anxious
- Change in appetite, weight, sleep
- Exhaustion, both physical/emotional
Relieving Grief that Leads to Caregiver Burnout
- Be open and honest about your feelings. With a support group, a counselor, a good friend, or in a journal, share what you’re going through. It’s OK to cry or admit that you’re angry or frustrated.
- Learn more about your client/loved one’s condition: symptoms, treatment options, progression.
- Make time for yourself and for “normal” activities.
- Reach out to friends and family members and ask for their help.
- Find new activities to share with the “new” person your client/loved one is becoming.
- Take time to talk to colleagues or friends about the person you cared for and what you miss about him/her. You won’t breach client confidentiality if you don’t mention names or specifics.
- Find someone you trust to talk to. Attend a grief support group; see Griefnet or org for options.
- Be conscious of your body and what’s going on in your life; breathe, sleep, eat right, exercise.
- Take advantage of respite care; take a break.
Dakota Home Care now offers “Comfort Care,” an extension of or addition to hospice care. If your loved one needs more than the one or two visits a day provided by hospice, Dakota Home Care can provide comfort-care-trained CNA’s to provide the additional support and care that may be needed—up to 24 hrs. per day. They are specifically trained to work with the hospice agency as well as provide personal care, emotional support and medication administration. Our Comfort Care staff members meet regularly for a “lunch and learn,” where they openly share their feelings about clients, have a chance to debrief after a death, and to learn and receive support from experts.
If you would like to learn more about Comfort Care, call us today at 701.663.5373 for a free consultation regarding how we can help with your loved one’s needs.
- Journal of Pain and Symptom Management, September 2005
- “Understanding Professional Grief“
- Institute for Professional Care Education Webinar: “Managing Caregiver Grief,” with Joann@ouch-its-grief.com