A long-distance mesothelioma caregiver is someone who lives an hour or more away from a person with mesothelioma who needs your help.

According to the American Association of Retired Persons (AARP), an estimated 11 percent of family caregivers live at least an hour away from a loved one they care for. They face an additional set of challenges and stressors compared to caregivers who live nearby.

For example, long-distance caregivers spend more of their own money on caregiving because they will more likely need to hire help, take time off work and pay for travel. They also worry about the kind of care their loved is getting in their absence.

There are steps long-distance caregivers can take to handle these kinds of concerns and getting organized is the first step.

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Getting Organized

Long-distance caregivers worry about staying informed and assured their loved one is receiving good care. Getting health care and medical matters organized will help you manage long-distance caregiving.

Disorganization and missed care can be stressful for caregivers. A 2021 research study noted that mesothelioma patients do not seem to have high needs for psychosocial support, whereas carers do.

Aim to get everything arranged during an initial in-person visit. This may require you to take a day or more off work to accommodate medical and legal appointments.

Spending time at the beginning to understand your situation will help you develop a plan for long-distance caregiving.

Medical Information & Access

You will need signed documents allowing doctors, hospitals and insurance companies to share medical information with you.

Long-distance caregivers who have durable power of attorney for the health care of their loved one have the right to request access to medical records.

Those who do not have power of attorney for health care must ask each medical provider to provide medical release forms to be signed by the patient or their legal guardian.

Financial Information & Access

One route for accessing financial information is durable power of attorney for financial decisions.

This designation allows long-distance caregivers to access their loved one’s financial information. Consider the following when getting financial affairs in order.

Legal Information & Access

Consider the following when the time comes to get legal affairs in order.

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Exploring Home Care Services

Home care services include a wide range of caregiving and health care services. This kind of care is provided by a variety of professionals including personal care aides, nurses, therapists, social workers and home medical equipment operators.

Recruiting Local Volunteers

Consider reaching out to friends, family, neighbors, religious organizations and local resources.

Set Up an Emergency Plan

Setting up an emergency plan helps mesothelioma patients and their caregivers respond well in case of an emergency. Consider the following when creating an emergency plan.

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Unplanned Travel

Consider the following to help you prepare for unplanned travel.

Local Point of Contact

Long-distance caregivers can ask someone living closer to the person with mesothelioma to serve as a local point of contact. This person might be a neighbor, friend, family member or a hired caregiving professional.

If one person can’t fully serve this role, consider asking several people to help out with various roles. For example, consider asking a neighbor to check on the house and make sure the mail is being picked up. Maybe a local friend could stop by once a week to visit and check on your loved one.

Make the Most of Visits

Long-distance caregivers can feel overwhelmed by how much they want to get done during a visit. Thoughtful planning in advance can help. Consider the following to make the most of your visits.

Caregiver App to Coordinate Care

If you have a smartphone, you can look into downloading a caregiver app to help coordinate care. If you don’t have a smartphone, caregiver apps are accessible through a tablet or computer.

These apps help you create and manage a community of care for your loved one. They allow multiple caregivers to stay in touch and share medical and caregiving updates.

Consider the following caregiver apps to coordinate care.

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