Long-Distance Mesothelioma Caregiving: Tips and Resources

Written by Michelle Whitmer | Edited By Walter Pacheco | Last Update: December 20, 2023

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.

Gather financial records including sources of income and assets, liabilities, insurance information, mortgages and debts, property deeds, car title and registration, copy of recent tax return and credit card information.
Get detailed information about bank accounts, safety deposit boxes and investments.
Contact cell phone and utilities provider to ensure these services remain on.

Legal Information & Access

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

Designate durable power of attorney for health care and financial decisions.
Gather important records including Social Security card, passport, birth certificate, marriage license, divorce papers, disability records and driver’s license.
Make sure your attorney has copies of your loved one’s living will and their last will and testament.

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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.

You may need home care services if:

The mesothelioma patient has a drainage tube that requires servicing and cleaning from a trained nurse.
The patient has wounds, such as surgical wounds from mesothelioma surgery, which require cleaning.
The patient needs injections or another form of care that should be administered by a medical professional.
The patient or their primary caregiver has trouble getting around.
The patient and their caregivers need help and emotional support through the final stages of mesothelioma.

Recruiting Local Volunteers

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

Reach out to neighbors to let them know about your loved one’s health and ask for their phone numbers in case of an emergency.
Ask what each person is willing and able to do.
Create a document to track everyone’s roles and their contact information.
Hire a care manager or find someone who is qualified and willing to volunteer for this role.

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.

Decide what hospital you will go to in advance, so you don’t have to figure it out in a state of panic.
Print out important medical information, including your specific diagnosis, treatments received, medications taken, living wills and durable power of attorney for health care. Store copies in your medical emergency kit.
Other items you may want to include in the kit: Water, snacks, spare cash or change, device chargers, forms of entertainment, travel-sized toiletries and a change of clothes.
Consider purchasing a medical alert system if your loved one lives alone.
Determine who you need to call to update family, friends and neighbors. Consider asking a trusted friend or family member to help you with this task.

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Unplanned Travel

Consider the following to help you prepare for unplanned travel.

Set aside vacation or sick days from work in case you unexpectedly have to travel during the week.
Research your travel options and have a plan in place in case you have to leave suddenly.
Choose a friend or neighbor to care for your home if you have to travel on short notice.
Make arrangements to care for your own family while you are away.

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.

Make appointments in advance to ensure you will meet with medical providers, home health aides, housecleaners, social workers and anyone else involved in your loved one’s care.
Also make appointments with financial and legal professionals to get your loved one’s financial and legal affairs in order.
Coordinate with local caregivers to give them break while you are in town.
Set aside time during your visit to assess where help is needed. You can arrange for appropriate help immediately, if necessary, or make arrangements from afar once you return home.
Look for signs of abuse if your loved one lives alone and is receiving care from hired health care professionals. Look for signs of malnourishment, bruises, unexplained injuries or drastic changes in behavior or mood.
Even though it is a difficult and emotional topic, try to discuss end-of-life care. Talk about living wills and whether they are ready to sign paperwork to ensure their medical wishes are fulfilled.
Plan to spend quality time together in addition to addressing medical and caregiving needs. Setting aside time to do things that you both enjoy will bring joy to your visits and help you truly make the most of your time spent together.

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.

Older woman on a video call on her phone

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.

CaringBridge: This app offers a space to share updates and coordinate care.
Lotsa Helping Hands: Long-distance caregivers may benefit from this app’s interactive calendar to keep track of appointments and coordinate care.
Caring Village: This app allows caregivers to create a care plan, organize a calendar and create do-to lists.

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