Family caregivers are the core members of the hospice care team and are an unsung pillar in the United States economy — contributing an annual 37 billion hours of care and whose efforts total of 450 billion dollars of unpaid healthcare labor each year.
To provide the level of care and comfort that terminally-ill loved ones need, caregivers must sacrifice a great deal from their personal and professional lives. Careers, relationships, finances, and even spiritual needs are often left unattended and unfulfilled in the interest of ensuring that the needs of the care recipient are met. This constant attention to another’s needs, over time, often becomes a core part of a caregiver’s identity.
What Caregivers Sacrifice to Fulfill Their Role
Caregivers often come into their role suddenly, quickly assuming the tasks of a caregiver without realizing they’ve taken up the caregiving mantle. In most cases, caregivers don’t recognize their sacrifice and view the tasks they perform — such as administering medications, preparing meals, and making arrangements to live with their loved one — as simply being there for a loved one during a time of need.
Caregivers sacrifice on-the-job focus and potential career advancement
60% of caregivers are working either full-time or part-time in addition to their care duties, placing strain on the ability to focus and perform while at work. These elevated levels of stress can begin to take their toll on the professional lives of working caregivers, often leading to lost advancement opportunities and, in the case of over 22% of working caregivers, earlier-than-planned retirement in order to care for an ill family member.
Caregivers sacrifice finances
Caregiving also places a burden finances, as well. As of a 2007 survey, the median out-of-pocket expense for a caregiver totaled over $5,500 annually. Long-distance caregivers feel this strain more acutely, spending, on average, over $8,700 over the course of a year on care-related expenses.
Caregivers sacrifice physical and emotional health
“Overwhelming” is the term over 55% of caregivers use to describe the demands of caregiving. Naturally, being overwhelmed for such an extended duration has a detrimental effect on both physical and emotional health, and lead to an overall negative outlook on caregiving and life in general. Caregivers are more prone to sickness, depression, anxiety, and overall lower quality of health than the general population.
Caregivers sacrifice social connections
With the needs of the care recipient demanding attention, caregivers forego outings with friends, family, and coworkers and begin to withdraw from nearly all social connections. Over time, this frequent withdraw from social connections — other than the care recipient — can lead to intense loneliness and feelings of social isolation.
The Impact of a Care Recipient’s Death on Caregivers
The aftermath of a loved one’s death is often an extremely difficult time, as so much of one’s sense of self came from providing care to another. This can be a time where caregivers can suddenly feel lost and alone after such a devastating loss.
Guilt and Depression
Following a loved one’s death, relief is often felt by the caregiver; no longer is such constant, demanding care required of them, and their loved one it finally at rest and free from pain. This relief, however, can quickly turn to guilt for feeling such relief, or for the feeling that more could have been done near the care recipient’s end of life.
Confusion About Life’s Purpose
A caregiver’s entire identity can become wrapped up within the demands of caregiving. Now, no longer needing to shoulder the burden of providing care, the caregiver is left without someone to care for — suddenly without a sense of purpose and usefulness.
Caregiving is a demanding role and one that calls for sacrifice from every part of life, especially socially. As caregivers place more and more attention and focus into their caregiving duties, social connections and outings often become less and less frequent, often evaporating completely, leaving the care recipient being the primary form of social interaction for the caregiver. With the care recipient’s death, intense feelings of loneliness can begin to manifest, as the last remaining social connection in the caregiver's life is gone.
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But what happens when caregiving ends? Once the mantle of caregiver is set aside, following the death of the care recipient, how can caregivers begin to rebuild their identity and reclaim their sense of self after such a long period of self-sacrifice and vigilant attention to the needs of another?
Rebuilding Your Life After Caregiving
Having invested so much time and attention into the care of another, focusing effort into coping with grief and personal needs can feel selfish and foreign. Now is the time to refocus the love and attention you gave to your loved one and pour it into your own emotional, spiritual, social, and physical reinvigoration.
Coping with Grief and Rebuilding Emotionally after Caregiving Ends
The task of coping with grief and beginning to find emotional and spiritual healing is no small effort, but there are effective methods you can employ to aid your healing during this time of rediscovering yourself and coping with the death of your loved one.
Rebuilding Socially after Caregiving Ends
Though we may not always feel like it, especially after experiencing such a painful loss and dramatic life change, we need uplifting connections with others. Cultivating positive, meaningful relationships with others — particularly those who have experienced what you’re going through — is tremendously healing when on the journey of grief recovery and self-discovery.
Reinvigorating Your Physical Self after Caregiving Ends
Physical care is a crucial component in rediscovering one’s identity after setting aside the mantle of caregiving. Investing in your physical well-being is a key component in rebuilding your identity and reinvigorating your whole person.
Pursuing Healing and Living a Rekindled Life
Caregiving is an all-consuming role and one that demands a great deal of life changes in order to meet the care needs of a terminally-ill loved one. Such a long-term dedication to a singular focus naturally leads to a diminishing of focus on one’s own life, but by beginning to work towards healing and realizing that caregiving isn’t the core of your identity, you can begin to live a life rekindled by renewed purpose.
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- Bodnar, Joy C., and Janice K. Kiecolt-Glaser. "Caregiver Depression After Bereavement: Chronic Stress Isn't Over When It's Over." The Institute for Behavioral Medicine Research at Ohio State University Medical Center. American Psychological Association, Jan. 2005. Web. July 2016.
- "Family Caregivers - What They Spend, What They Sacrifice." National Alliance of Caregiving, Nov. 2007. Web. July 2016.
- Haley, William E., and Brent J. Small. "Bereavement after Caregiving or Unexpected Death: Effects on Elderly Spouses." ResearchGate. University of South Florida, June 2006. Web. July 2016.
- Haley, William E. "The Costs of Family Caregiving: Implications for Geriatric Oncology." Critical Reviews in Oncology Hematology. Department of Gerontology, Nov. 2003. Web. July 2016.
- Reinhard, Susan C., Lynn Friss-Feinberg, Rita Choula, and Ari Houser. "Valuing the Invaluable: 2015 Update." AARP Insight on the Issues. AARP Public Policy Institute, July 2015. Web. July 2016.