End of Life Caregiving Challenges Faced by Older Women
February 15, 2015
“There are only four kinds of people in the world-those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers” (Roslyn Carter as cited in National Family Caregivers Association, 2011).
An abstract from the NIH informs us that In the United States the number of people over 60 is expected to triple over the next 50 years and as the population ages so do family caregivers. Increased levels of depression and low ratings of subjective well-being in caregivers are consistently associated with older age, the spousal relationship, and the female caregiver gender.
According to the National Alliance for Caregiving (2011), 65.7 million caregivers make up 29% of the United States adult population and are found in 31% of all the households. Of these, almost 49 million are caring for an adult or older adult patient, with 20-25% of caregivers estimated to be 65 or older (National Alliance for Caregiving, 2011). Age related changes can bring numerous challenges, among them the likelihood of chronic illness and/or disability. For many older adults this means witnessing the illness or disability of a loved one, such as a spouse, and the potential to transition into the role of caregiver that can be a threat to their well-being (Poulin, Brown, Ubel, Smith, Jankovis, & Langa, 2010). Older adult caregivers face a double jeopardy: while they provide supportive care to their declining loved one, they too often suffer multiple chronic conditions and decline.
Increased levels of depression and stress and low ratings of subjective well-being in caregivers are consistently associated with older caregiver age, the spousal relationship between the patient and the caregiver as opposed to parent/child or sibling, and caregivers of the female gender (Schulz & Sherwood, 2008). When compared to male caregivers, female caregivers are more likely to not only have decreased well-being but are also more likely to suffer from anxiety, depression, and other symptoms related to the emotional stress of the caregiving role (Family Caregiver Alliance, 2011). Pinquart and Sorensen (2011) found that spousal caregivers are older than other family caregivers and suffer from more health problems, which lead to greater perceived stress when providing care. Support for family caregivers has long been advocated, yet there is a shortage of evidence-based strategies to assess and respond to the caregivers' needs (Hudson et al., 2010). Clinical assessment tools generally focus on the patient, despite family caregivers' experiences of personal distress, burden, impaired self-care, increased psychological and physical morbidity, and even mortality (Christakis & Allison, 2006; Monin & Schulz, 2009).
As part of a larger ethnographic study, an instrumental case study was completed to explore the phenomenon of providing care at the end of life. The cases were selected because they illustrate the challenges faced by older female caregivers, with all participants in the case study being female, and in a spousal relationship with the patient, and over 65 years of age. Mrs. A. is a 78-year-old woman providing care to her spouse who suffers a life-limiting illness. His care progressed from a curative focus into comfort care. Care was provided in a Cooperative Network care delivery model. Mrs. A. has been married for over 40 years and has three children who live within a close proximity and provide a supportive network. Mrs. A. has a history of stroke, depression, vision and hearing impairments, and has had bilateral knee replacements. Mrs. S. is a 73-year-old woman providing care to her spouse with terminal illness being treated within the Interdisciplinary Team care delivery model. Mrs. S. has been married for almost 20 years and has four children who are supportive but live at a distance and are busy with their own lives. Mrs. S. has a history of stroke and cardiovascular disease. Mrs. M. is an 80-year-old woman providing care to her spouse with a life-limiting condition that is demarcated by a series of exacerbations that may end in an unanticipated or very late acknowledgement of the probability of death. Mrs. M.'s spouse is being treated within the Provider Dominant care delivery model. Mrs. M. has been married for over 50 years, with no children. Mrs. M. has a limited, informal support network of friends and neighbors and has a history of cardiovascular disease, arthritis, and vision impairment. The following five themes emerged from the instrumental case study: balancing multiple morbidities; feeling overwhelmed and exhausted; dealing with personal health issues; feeling isolated; and coordinating care.
As the older adult patients in this case study all had multiple morbidities in addition to their life-limiting illness, this added to the complexity of the caregiving role. The older adult caregivers faced difficulty in balancing not just the life-limiting condition but also the patient's multiple morbidities. Feelings of frustration were expressed when the caregivers perceived only the life-limiting condition was being treated without attention to the other co-morbidities. In addition to expressing frustration about managing the patient's multiple morbidities, the challenge of dealing with different specialists intensified feelings of uncertainty in the caregiving role.
The second theme the older female spousal caregivers in the study discussed was feeling overwhelmed and exhausted. The difficulty of always having to be responsible was exemplified in the following quote: “I think the hardest part is being on call 24/7.” In addition to being responsible for the patient on a 24/7 basis, the caregivers were also faced with expanded individual demands to maintain the household.
The older adult caregivers in this case study had their own aging health issues to attend to that escalated due to the physical and emotional demands of the caregiving role and in turn impacted their ability to provide care. The caregivers were facing age-related changes and experiencing a decrease in their physical and psychological reserves as noted by Mrs. S. when discussing her cardiac issues: “So it's this valve problem that I guess I have to work around. We age… these things start to happen, you know, and something is going to get us sometime. So I guess maybe that's my thing.” In fact, when dealing with her own heart health issues, a result of radiation for breast cancer over 30 years ago, Mrs. M. stated that she had to “fit” insertion of a pacemaker between the admission of her husband to the hospital and his discharge so that he would be cared for during her procedure. As well, caregivers put the patient's needs and health ahead of their own well-being. The caregivers viewed themselves as co-providers of the patient's care; the focus was on caring for their spouse in the midst of struggling with their age-related health issues sometimes at the expense of their own health.
The theme of feeling isolated was a concern for the older female caregivers. As with other caregivers, caring occupied so much time and energy that opportunities for social interaction outside of the caregiving role were limited. The extent of feeling isolated became pronounced for the older caregiver especially when their social support consists of individuals of similar age. Interactions with family and friends became more limited as the patient's condition progressed and demands in the caregiving role escalated. In this environment of feeling isolated, what little time and energy that was left was at times consumed by hands-on care and the effort required to coordinate the patient's care. For family caregivers to provide the best care possible and engage in adequate self-care, it is important for health care providers to view them as co-providers and co-recipients of care (Penrod et al., 2011). In addition to highlighting areas of need, viewing caregivers as co-recipients of care allows them to express concerns about their caregiving role and presents the opportunity to raise questions and be provided with helpful resources.