Disease Information & Support


The Word:


Long-Distance Caregiving

In today's world, it's common for family members to live in different cities and states. As a result, many adult children must help their parents from afar. This task can be difficult, stressful and time consuming.

Families whose members live at a distance from one another have many difficult questions and issues to address. For example, most long-distance caregivers aren't able to visit frequently and can't provide care in the home. Yet, despite having good reasons, adult children often feel guilty that they can't spend more time with their parents. They may also feel overwhelmed by the challenges of arranging services long distance.

One of the most difficult aspects of long-distance caring can be knowing when your help is needed and when you should make the trip in person. Clear emergencies - fire, accident, natural disaster, a serious medical problem - obviously require a trip. Other situations can be difficult to assess over the phone.

You may feel guilty because you can' t be present to take care of your loved one's immediate needs, or you may feel overwhelmed by the complexities of organizing two separate households. To sustain long-distance care over a period of time, you need to be sensitive to your own needs, as well as you loved one's. There are resources to help the caregiver, too, such as those offered by The Leukemia & Lymphoma Society. Contact your local chapter.

Is Long-Distance Caregiving for You?

At times, you may not have a choice to think carefully and plan fully before entering into a long-distance caregiving situation. The complexity of long-distance caregiving can result in a great deal of stress. Not everyone's situation or emotional makeup can handle these out-of-the-ordinary pressures over a long term.

First, ask yourself:

  • Can I or my job tolerate travel on short notice?
  • Can other family members help?

Also consider:

  • You may be required to travel on short notice. Distance is a factor as well: A three-hour drive can be less stressful and require less planning than even a short flight with a layover.
  • If your family includes small children or pets, they must be cared for in your absence. Can you create a support system with friends and relatives to help?

While employers are becoming increasingly aware of the caregiving challenges facing their employees, you still must consider your workload and any obligations or deadlines. Can you count on co-workers to be accommodating? Can you take work with you when you travel?

Long-distance caregivers often face difficult financial burdens. Phone bills can run extremely high; necessary travel can eat up vacation budgets; and chances are you'll have to pay someone (or manage the financial accounts) to provide your loved one with the care and assistance that you can't be there to give.

Can you handle the emotional stress? Most caregivers experience feelings of guilt for not being as available to their loved ones as they feel they should be. The long-distance caregiver can also experience feelings of helplessness from not being physically able to provide care and comfort.

As you prepare a care plan for an aging or infirm loved one, think about the difficulties involved in long-distance caregiving. Your loved one may not want to move from his or her home, but you have to consider what's best for everyone involved, including yourself.

Preparing for Long-Distance Emergencies

If distance precludes frequent visits, you may not be aware of diminishing faculties or abilities that could result in injury. Having a plan in place - such as knowing you can reach out to friends and neighbors nearby or hiring a home health aide if you're financially able to do so - can help lessen your concerns.

If your loved one is taken to an emergency room and you're unable to get there immediately, you can turn to the following resources:

  • The hospital discharge planner can arrange for any immediate care needs - cooking, dressing, changing bandages - to be met by a home health aide.
  • Medicare covers a home health aid up to a maximum of five days a week, four hours a day, for a limited time, when there's a skilled need, such as nursing or physical therapy.
  • Some community organizations offer emergency care. The hospital social worker/discharge planner may be able to refer you to community organizations that offer these services.
  • The local chapter of  The Leukemia & Lymphoma Society (LLS) can help you with community referrals. Contact your local chapter and ask to speak with the patient services manager.
  • Respite care can be arranged through your loved one's local area agency on aging or other community services. Respite care was created to give caregivers a break from caregiving duties. However, respite care can also help with short-term care needs until you work out a more permanent solution.

Set Up an Emergency Plan

If your loved one has an accident or other emergency situation, you'll want to get there as soon as possible, not only to offer reassurance but also to make any necessary decisions about your family member's care.

If you have an emergency plan in place, you'll have more time to make clear-headed decisions about your work and home arrangements, as well as any decisions regarding your loved one. That means less stress, less wasted time and fewer mistakes. Try these suggestions to help you prepare:

  • Develop a support system of friends, neighbors and family members who might step in for you, and clearly define everyone's role in your emergency plan.
  • Make a list of all names and numbers of your support system members.
  • Set up a "phone tree" to keep the entire emergency support system informed.
  • Make sure that all members of your caregiving support system have a phone number where you can be reached during a crisis.
  • Keep a bag packed and ready with toiletries and appropriate clothing.
  • If you know that your trip will require air travel, make sure you have the name and number of a reliable travel agent who can make necessary arrangements quickly.

Even during nonemergency situations, caregiving responsibilities are complicated by distance. Connecting with the right people and services is essential to ensuring the best care and comfort for your loved one.

Long-Distance Support Systems

Family, friends, neighbors, community agencies and even employers can provide valuable support as you care for your long-distance loved one.

As a long-distance caregiver, you should establish support systems for both your loved one and yourself. Other family members are an obvious resource, but some may be more willing than others to share in the caregiving burden or you may be the only family member available.

If family members are available but live too far away to provide hands-on caregiving, they may be able to help with financial or legal matters that can be handled by phone or mail. If you have teenagers, ask them to get involved. This can be an opportunity to strengthen family bonds and teach your children about empathy and responsibility. Neighbors and friends in your loved one's community may be willing to provide transportation or help with shopping, household chores and other tasks.

Along with the help that you and others provide from afar, your loved one may need caregiving assistance from someone closer to home. Every community has various resources and services to help you care for your distant loved one. The local chapter of LLS can assist you with these resources. Contact your loved one's local chapter to speak with the patient services manager.

last updated on Wednesday, March 16, 2011

Get Information
& Support

Contact an Information Specialist.



Finding an appropriate clinical trial for patients with leukemia, lymphoma or myeloma has become much easier with the TrialCheck® website.

learn more