CASE STUDY: Caregiver Role Strain: Ms. Sandra A.
Sandra, a 47-year-old divorced woman, received a diagnosis of stage 3 ovarian cancer 4 years ago, for which she had a total hysterectomy, bilateral salpingo- oophorectomy, omentectomy, lymphadenectomy, and tumor debulking followed by chemotherapy, consisting of cisplatin (Platinol), paclitaxel (Taxol), and doxorubicin (Adriamycin). She did well for 2 years and then moved back to her hometown near her family and underwent three more rounds of second- line chemotherapy. She accepted a less stressful job, bought a house, renewed old friendships, and became more involved with her two sisters and their families.
Sandra developed several complications, including metastasis to the lungs. Then she could no longer work, drive, or care for herself. She had been told by her oncologist that there was nothing else that could be done and that she should consider entering a hospice. She met her attorney and prepared an advance directive and completed her will. She decided to have hospice care at home and, with the help of her family, set up her first floor as a living and sleeping area. She was cared for by family members around the clock for approximately 3 days.
Sandra observed that she was tiring everyone out so much that they could not really enjoy each other’s company. At this time, she contacted the Visiting Nurse Association (VNA) to seek assistance. Her plan was to try to enjoy her family and friend’s visits. After assessment, the VNA nurse prioritized her problems to include fatigue and caregiver role strain. Other potential problem areas that may need to be incorporated into the care plan include anticipatory grieving and impaired comfort.
Reflective Questions
- What are some of the stresses on Sandra’s middle-aged sisters and their families?
- What resources are available to manage these stresses and support the sisters while caring for their dying sister Sandra?
- Describe Sandra’s feelings about dependency and loss of autonomy because she is unable to do her own activities of daily living any longer
The Stresses on Sandra’s Middle-Aged Sisters and their Families
Sandra’s diagnosis of stage 3 ovarian cancer and subsequent decline in health has placed a significant amount of stress on her middle-aged sisters and their families. Some of the specific stresses they may be experiencing include:
- Emotional Strain: Watching a loved one battle a life-threatening illness can be emotionally draining. Sandra’s sisters may be feeling a range of emotions such as sadness, worry, fear, and grief. They may also feel a sense of helplessness as they witness Sandra’s deteriorating health.
- Time Commitment: Caring for a terminally ill family member requires a significant amount of time and energy. Sandra’s sisters may need to take time off work or make adjustments to their schedules to be available for her caregiving needs. This can put strain on their own personal and professional lives.
- Financial Burden: Medical treatments and end-of-life care can be expensive. Sandra’s sisters may be facing financial challenges as they navigate the costs associated with her treatment, medications, and hospice care. They may need to make sacrifices or seek financial assistance to ensure Sandra receives the necessary care.
- Physical Exhaustion: Providing round-the-clock care for a terminally ill individual can be physically exhausting. Sandra’s sisters may find themselves lacking sleep, neglecting their own self-care, and experiencing physical fatigue as they attend to her needs.
- Family Dynamics: The stress of caring for a dying loved one can sometimes lead to tension and conflicts within the family. Different family members may have varying expectations or opinions about the best course of action for Sandra’s care. This can strain relationships and create additional emotional burdens.
Resources Available to Manage Stresses and Support the Sisters
Fortunately, there are resources available to help manage the stresses faced by Sandra’s middle-aged sisters and their families while caring for their dying sister:
- Hospice Care: Sandra has made the decision to have hospice care at home, which can provide a range of services to support both the patient and their family members. Hospice teams typically include healthcare professionals, counselors, and volunteers who can provide emotional support, symptom management, and respite care for family caregivers.
- Support Groups: Joining support groups specifically tailored for caregivers of terminally ill individuals can be beneficial. These groups provide a space for individuals to share experiences, exchange coping strategies, and gain emotional support from others who are going through similar challenges.
- Counseling Services: Seeking counseling services can help Sandra’s sisters process their emotions, manage stress, and develop healthy coping mechanisms. Individual counseling or family therapy sessions can provide a safe space for them to express their feelings and navigate the complexities of caregiving.
- Respite Care: It is crucial for Sandra’s sisters to take breaks and prioritize self-care. Respite care services can provide temporary relief for family caregivers, allowing them to recharge and attend to their own needs without compromising the quality of care provided to Sandra.
- Community Resources: Local community organizations and charities often offer assistance to families caring for terminally ill individuals. These resources may include meal delivery programs, transportation services, and financial aid to help alleviate some of the burdens faced by Sandra’s sisters.
Sandra’s Feelings about Dependency and Loss of Autonomy
As Sandra is no longer able to perform her own activities of daily living due to her declining health, she may be experiencing a range of feelings about dependency and loss of autonomy. These feelings can include:
- Frustration: Sandra may feel frustrated by her inability to do things independently as she used to. The loss of autonomy can be emotionally challenging and may lead to feelings of helplessness or anger.
- Guilt: Sandra may feel guilty for burdening her family members with her care needs. She may worry that she is taking away their time, energy, and freedom, causing them to sacrifice their own well-being for her sake.
- Loss of Identity: Being unable to perform daily activities can lead to a loss of identity for Sandra. She may miss the sense of purpose and fulfillment that comes from being independent and self-sufficient.
- Vulnerability: Dependence on others can make Sandra feel vulnerable and exposed. The loss of control over her own body and the need to rely on others for basic needs can be emotionally distressing.
- Acceptance: Over time, Sandra may come to accept her new reality and find ways to adapt to her circumstances. This can involve finding alternative ways to maintain some level of independence or focusing on the positive aspects of the support she receives from her loved ones.
It is important for Sandra’s healthcare team and support network to provide emotional support, reassurance, and validation of her feelings as she navigates these complex emotions. By addressing these feelings, Sandra can work towards finding a sense of peace and acceptance in her current situation.