Long-distance caregiving for cancer
Long-distance caregiving for cancer involves providing support to individuals living with cancer while being physically separated by significant distances. Typically, this caregiving arrangement occurs when the caregiver lives at least an hour away from the care receiver. The role of a long-distance caregiver encompasses a variety of responsibilities, including coordinating health services, arranging personal care, and managing homemaker services. Caregivers often rely on a network of local friends, neighbors, and professionals to assist with daily tasks and medical appointments.
Successful long-distance caregivers prioritize communication and teamwork, utilizing online platforms to organize care and share updates. They may create care notebooks to keep track of medical information and ensure that all parties involved are informed. While long-distance caregiving can be rewarding, it can also lead to feelings of stress and guilt due to the inherent challenges of distance. Caregivers are encouraged to prioritize their own well-being and seek help when needed, recognizing that asking for support is a strength rather than a weakness. Overall, this caregiving model allows individuals to support loved ones through cancer treatment while managing their own life commitments.
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Subject Terms
Long-distance caregiving for cancer
DEFINITION: Long-distance caregiving is providing for the well-being of another person without being physically present. Caregiving is considered long distance when the caregiver lives an hour’s travel or farther from the care receiver. The people who receive care usually live in homes, apartments, and other independent living situations.
Support services: People who provide long-distance caregiving arrange, manage, or hire one or more of several support services:
- Home healthcare: Physical and respiratory therapy, nursing, home health aides, psychological or psychiatric care, medication assistance, and home medical treatments
- Personal care: Help with activities of daily living, such as dressing, bathing, eating, using the toilet, and grooming
- Homemaker services: Meal preparation, house cleaning, laundry, shopping for food and other items
- Companionship: People who regularly make supportive visits or telephone calls
- Live-in assistance: Help provided by people who cook, clean, and perform other nonmedical services in exchange for housing, meals, and a salary
- Transportation: Rides to and from medical appointments, religious services, and other places
- Meals: Ready-made meals can be provided from a distance using Uber Eats, Postmates, DoorDash, or other delivery services. Meal delivery kits and grocery delivery services are also options for those who can cook.
Prevalence: Millions of families and friends live far apart, and millions of people have cancer and other health challenges. Career, education, family situations, and other life demands often separate caregivers from care receivers. Physical distance does not free caregivers from the responsibility of managing the care of others who deal with cancer and other illnesses. Healthcare organizations estimate that more than five million people in the United States provide long-distance caregiving services for others.
Strategies: Successful long-distance caregivers organize networks of volunteers and professionals, including their care receivers, who are central to the networks. Teamwork and communication are the guiding principles of these networks.
Long-distance caregivers often assign responsibility for components of care. For example, they ask neighbors to do yardwork or friends to run errands. They stay in contact with these local caregivers to monitor the welfare of the care receiver. Using online coordination platforms like Lotsa Helping Hands can improve the organization of providing meals, rides, and more.
When possible, long-distance caregivers join their care receivers at medical appointments to learn about diagnoses, treatments, and ways to manage needs. They also seek advice about care options from doctors, oncology nurses, and social workers.
Some long-distance caregivers benefit from creating physical or digital care notebooks. Websites ike Caring Bridge allow caregivers to continually update health information about their loved one. They write notes, make lists, and organize information, resources, medications, and schedules. They log contact information for doctors, therapists, medical facilities, emergency contacts, friends, neighbors, and clergy.
Resourceful caregivers might use the Internet to gather information about medical facilities, assisted living facilities, nursing homes, hospice care providers, and other resources. They also frequently call, send letters, or write email messages to care receivers to communicate love and support and monitor needs. They make regular visits to reassure care receivers that they care and determine whether home care situations work.
Successful long-distance caregivers plan for sudden and unexpected needs. They expect change in care receivers’ situations and plan ahead to handle it. They prepare to make unexpected visits by researching quick and easy ways to travel to their care receivers.
Effective long-distance caregivers make decisions with their care receivers about legal and financial matters. They help organize care receivers’ key legal, financial, and insurance documents. They also ensure that living wills, health directives, and medical and legal powers of attorney are in order and communicated to appropriate professionals.
Strengths and limitations: Long-distance caregivers have strengths and limitations. They know that distance creates limitations, and they occasionally feel guilty, stressed, anxious, or overwhelmed by the challenges of their responsibilities. They do not keep their caregiving a secret. They ask for help as a sign of strength and a means to improve care. They stay as flexible as possible and allow themselves to accept others’ help. Sometimes, they hire a professionally certified care manager to resolve issues before crises arise.
Wise long-distance caregivers are kind, caring, and patient with themselves. They make their own physical, emotional, and spiritual health a priority. They meet their own needs and take respite breaks from caregiving. They accept support from family, friends, and their faith communities. Many reach out to caregiver support groups, online bulletin boards, and buddy systems.
They are receptive to care receivers’ existing informal support systems the friends, neighbors, and others on whom care receivers depend. They bring these resources into their care networks and ask the people to contact them when they have new information or learn about problems requiring assistance.
Bibliography
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