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  • Writer's pictureCaregiver Mental Wellness, Inc.

Long Distance Cancer Caregivers - by Carolyn Dowdy (Caregiver Mental Wellness, Inc.)



Carolyn Dowdy, of Caregiver Mental Wellness Inc., explores distance caregiving - its challenges and strategies to address these challenges. Read it On The After Cancer

Caregiver Mental Wellness, Inc. empowers caregivers to thrive and find balance in their caregiving journey, envisioning a world where caregivers’ mental and emotional well-being is prioritized, and where compassionate support and understanding is readily available in families, among friends, in communities, and our workforce.


Long Distance or Distance Caregiving:


In an era characterized by globalization and mobility, the traditional concept of caregiving has expanded beyond geographical boundaries. Distance caregiving has emerged as a significant aspect of contemporary family dynamics, challenging individuals to provide support and care for their loved ones from afar. This paradigm shift is fueled by factors such as career opportunities, educational pursuits, and the general dispersal of families across the globe.


Distance caregiving, also known as long-distance caregiving, refers to the scenario in which individuals provide support and care for their family members or friends who live in a location that is not accessible. This type of caregiving is not limited to a particular age group or health condition; it spans various situations, including aging parents, supporting a friend with a chronic illness, or ensuring the well-being of a sibling or child living in a different city.


The concept of distance caregiving is on the rise. Limited research indicates that caregivers in such situations are grappling with notable anxiety and distress, prompting the need for nursing intervention. Historically, healthcare providers have not effectively addressed the specific needs of these distant caregivers or integrated them into family-centered, quality cancer care. The omission of their involvement in the patient's care plan and the adbsence of supportive interventions inadvertently complicate medical decision-making in clinical settings, especially during challenging phases of the patient's illness trajectory. This includes the difficulties of results of scans for cancer status, chemotherapy treatments, treatments for other health conditions, and the devastating report of the advancement or return of cancer the family thought was improving.


This article discusses some of the distant caregiver’s challenges, the possible complex emotions experienced by the distant caregiver, steps that may be taken to alleviate these feelings, and strategies that may support a smoother process for all participants involved in the care recipient’s journey.


Distant Caregivers’ Challenges:


Part-time distant caregivers often coordinate with health professionals or other family caregivers living near the recipient. These distance caregivers face numerous challenges including, but not limited to:


  • Limited Physical Presence: Their inability to be physically present for day-to-day care, emergencies, or routine activities. This absence may lead to guilt, helplessness, and frustration for the distant caregiver.

  • Communication Barriers: Communication becomes crucial. Time zone differences, busy schedules, and technological challenges may hinder regular updates and check-ins. The caregiver may have meetings at work and cannot be on Zoom or telephone calls to stay in the loop on the care of the loved one. Misunderstandings may arise due to the lack of in-person conversations and non-verbal communication.

  • Navigating Healthcare Systems: It is hard enough for a local caregiver, much less a distant caregiver, to coordinate medical care, and it can be complex at a distance, especially when dealing with different healthcare systems, insurance policies, and providers. Obtaining accurate information about the care recipient, tracking care, scheduling appointments, or coordinating cancer treatments can be a daunting task.

  • Sustaining Their Other Responsibilities in Life: These distant caregivers have multiple responsibilities in life that may include a stressful job, other children in their home to take care of, a special needs child, nurturing their partner, maintaining their social activities and friend relationships, and last, but not least, maintaining their own well-being.


Caregivers’ Complex Emotions:


Distance caregivers often undergo a range of complex emotions as they navigate the challenges of providing support and care from afar. The emotional landscape can be multifaceted, influenced by various factors such as the nature and seriousness of the cancer patient’s condition, the caregiver’s personal circumstances in their immediate family and their work situation, and the effectiveness of the caregiving arrangements and collaboration with the other caregiver’s and/or health professionals’ team.


Nursing interventions have the potential to alleviate the unnecessary suffering and distress experienced by distance caregivers who often feel disconnected from the oncology team. A crucial step involves inviting the distant caregiver to be part of the care plan, laying the groundwork for a trusting relationship, and offering essential emotional support. Providing educational resources and guiding them to relevant websites can offer both practical and emotional support from a distance. Innovative technology is an additional connection when distant caregivers cannot physically visit the patient, including the mother, father, sibling, adult child, or close friend who would like to participate in a physician's office or treatment visits.


By equipping these distant family members with knowledge about their role and facilitating much-needed support and collaboration, they can become valuable support for the cancer patient and local caregivers, ensuring success in their part-time caregiving responsibilities.

Some common emotions caregivers may feel include:


  • Guilt for being unable to be present with hands-on care, attend medical appointments or treatments or handle daily responsibilities. They feel the guilt of not doing enough and stress that the primary local caregivers may be overburdened with their loved one’s care responsibilities. Other friends and family members need to consider that the local caregiver deals with the situation daily. They should have a clearer understanding of the needs and situation involving the care recipient. Distant caregivers should be compassionate and cooperative to keep a sustainable and effective working relationship and collaboration with care partners.

  • Helplessness for the inability to immediately respond to emergencies or be there for their loved ones in times of need can create a sense of helplessness and frustration.

  • Worrying about the well-being of the care recipient, especially when dealing with health issues or aging, can lead to persistent worry and anxiety.

  • Worrying that local caregivers may feel that the distant caregiver is not carrying their responsibility. For example, the aging parent is ill, and siblings living near the care recipient must carry the day-to-day responsibility of the parent's care.

  • When scheduling conflicts or misunderstandings occur, they feel frustrated when trying to coordinate care and communicate effectively with other caregivers and health professionals.

  • Distant caregivers may experience a sense of isolation, as they may not have the same level of in-person support and shared experience as the local caregiver.

  • Juggling the demands of distance caregiving with personal, professional, and other family responsibilities can create a constant sense of imbalance and stress.

  • The emotional toll of caregiving, even from a distance, as a part-time caregiver can lead to exhaustion as caregivers navigate complex emotions over an extended period.

  • Some distant caregivers may feel relief and satisfaction despite the challenges. Caregivers may also experience moments of relief and satisfaction when they successfully coordinate care, address issues remotely, coordinate effectively with other local caregivers, or witness positive outcomes for their loved ones.

  • The distant caregiver may feel more connection and fulfillment, maintaining emotional connection through regular communication with the local caregivers, the care recipient, and the health professionals, even when distance is a barrier.

  • It is important that distant caregivers remain adaptable. They often need to be highly adaptable, adjusting their plans and strategies as their loved one's circumstances change, which can evoke a mix of emotions such as frustration or sadness.

  • Trying to balance personal and professional commitments with caregiving responsibilities may lead to stress, anxiety, depression, sadness, and possibly caregiver burnout.


It is important to recognize that emotions can vary widely among distance caregivers depending on the situation, including, but not limited to, the health status of the loved one, relationship dynamics within the family unit, communication and collaboration with the care recipient, healthcare team, and other caregivers who may be family or friends.


It is essential to recognize that emotions vary widely among distance caregivers, and individual experiences are unique. Open communication, support networks, and prioritizing self-care and well-being are crucial to coping with the emotional challenges of providing care from a distance.


Strategies for Successful Distance Caregiving:


It requires forethought and planning regarding communication, utilizing technology, building a support network, and planning visits strategically. By doing this, it establishes a workable, stress-reducing strategy within the distant caregiver's life and family situation, including their job. Within this strategy, attempt to sustain a harmonious collaboration with the caregivers who reside near the care recipient and the healthcare team or partners.


Communication: Establish clear communication channels to foster open, honest communication with the care recipient and other involved family members. Get regular updates and have discussions that can help all participants understand evolving needs and challenges on this journey. Utilizing technology for virtual communication might include video calls, messaging apps, and emails, which provide a means to stay connected and engaged and reduce feelings of isolation.


Utilize Technology: Coordinate with the healthcare provider and caregivers who reside with your loved one to discover what technology might be available for healthcare management, such as online medical records, appointment times, healthcare team names, and locations. Consider using telehealth consultations and possibly medication management apps. Set up smart home devices for remote monitoring and assistance. Of course, all these options may not be feasible because every situation is different.


Build a Support Network: Depending on the situation, and as appropriate, connect with local friends, neighbors, and professional caregivers to provide on-site support for the loved one. Investigate and utilize local resources, such as home care services and support groups, possibly including your loved ones' friends at their faith-based and community organizations. Do research to find out about all the social services in the care recipient’s community. The healthcare organization can provide information on social workers. These resources can offer practical assistance, information, and emotional support to the care recipient and their caregivers.


Plan Visits Strategically: In coordination with your loved one's local support team, coordinate visits to maximize the impact. Plan around significant events, medical appointments, or times when you, as the distant caregiver, can be most helpful to the care recipient and their local support network.


When planning visits, consider coinciding with important events, medical appointments, or times of increased need. The local caregiver may need a break or getaway. You can support the local caregiver(s) by managing the care and being with your loved one while they rejuvenate. This time will allow you to assess the situation, provide hands-on support, and make necessary adjustments to the caregiving plan in coordination with the local caregiver and care team.


Conclusion


Distance caregiving is a complex and evolving aspect of modern life, requiring adaptability, communication, understanding, proactive planning, and collaboration with the care recipients’ support network. By acknowledging the challenges and implementing effective strategies, distance caregivers can provide valuable support and maintain a meaningful connection with their loved ones, even across vast geographical distances. As society continues to evolve, so must our approach to caregiving, ensuring that distance does not diminish the quality of care and support we can offer to those we hold dear. Coping with the emotional challenges of distance caregiving is an ongoing process that requires adaptability and resilience. The journey may be smoother by planning, discussing responsibilities to assign to the local caregivers and the distant caregivers, communicating with compassion and understanding, and seeking support and available local resources. By implementing these strategies and seeking support from both local and remote networks, caregivers can better navigate the complexities of providing care from afar.



 

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