Caring Across the Miles: Long Distance Caregiving

Caring for an aging relative from a distance, whether across the state or across the country, is a challenge faced by increasing numbers of adults the world over. In the United States, we often assume that families are separated when children go off to college and relocate to the area of their schooling, or when adult children pursue careers in other towns or states. While this is true to some extent, more and more frequently, it is the older relative who moves, to enjoy retirement in another climate, to relieve themselves of the responsibility of homeownership, or be closer to an adult child.

If your family is separated, for whatever reason, and you provide even a small amount of care (e.g., advice, concern, or emergency help) for an older relative from a distance, you may be experiencing anxiety, stress, and/or guilt about your role. It is likely that, in addition to your caregiving responsibilities, you must also meet the needs of your spouse, children, and career. And when did you last take time for yourself?

Although long distance caregiving can be stressful, it need not overwhelm you. There are some basic steps you can follow to assess your aging family member's needs, put systems in place to help him/her remain as independent as possible, make good use of visits with your elder, and create and fine tune a care plan that works for everyone involved.

Assessing Needs From A Distance

Angela Heath, author of Long Distance Caregiving - A Survival Guide for Far Away Caregivers, captures precisely the dilemma long distance caregivers face in assessing their older relative's needs from a distance:

    Knowing if an older person is having a problem when you live in a distant city or state can be difficult. At times, it may seem that the elder refuses to admit a problem and at other times, s/he may exaggerate every small difficulty. And the way families respond to the needs of their distant relative varies a great deal too. Some caregivers are filled with anxiety, imagining the worst and over-reacting to insignificant conditions. Others are oblivious to major changes and concerns experienced by the older person. Many times, caregivers and care receivers will differ in their perceptions. Is a concern a problem or not? Is it a small or significant problem? These are the types of questions that cause long distance caregivers to lose a lot of sleep.

    As a caregiver, you probably understand that people experience changes and limitations as they grow older. Many of these changes may be a source of concern for you, but quite often the person experiencing the changes adjusts to them beautifully. It may mean that your older loved one may be willing to put up with minor inconveniences in order to maintain independence. So, if things don't seem perfect, be sure they require your attention before you intervene.

Initially, you will probably assess your elder's situation over the telephone. Regular phone calls can be brief yet informative if you plan the conversation ahead of time and stay focused. A gentle yet persistent approach, using a pleasant conversational tone of voice, can get to the heart of concerns you may have about an elder's physical, mental, or emotional well-being. You can then put the informaion you uncover in such "telephone assessments" in context with what you know about your aging family member's condition from his/her physician, your most recent visit, the medications s/he is taking, recent life events, and other relevant factors.

Helping Hands

As a long distance caregiver, it is especially important that you identify helpers in your older relative's community who can do the little things that distance prevents you from doing yourself. An informal support network of family and friends to visit the elder, run errands, provide transportation, or just offer companionship can be invaluable. Talk with your older relative to learn who his/her "substitute family" is, or could be, and exactly how they are willing to help. You may want to get the addresses and telephone numbers of people such as members of your aging family member's religious congregation, close friends and neighbors, and his/her health care provider so that you can contact them to find out what they may already be doing for your elder, and/or how they might help in the future.

You can even make a simple chore like a trip to the grocery store into an adventure. For instance, you might talk about where the products on the shelves are primarily eaten. Explain that tortillas are common in Mexico, spaghetti is a favorite in Italy, and Gouda cheese comes from Amsterdam. When you get home, you might locate these countries on a map together. In this way, an ordinary trip to the supermarket can be made appealing and even educational.

You may find that many people are willing to help, but don't know how. Consider asking your elder's helpers to do one or more of the following:

  • Visit the older person at least once a week and observe his/her appearance, behavior, and condition of the home. Ask the helper to let you know of sudden changes or deterioration in any of these areas.
  • Provide transportation to and from regular outings, such as medical appointments, religious services, grocery shopping, or social events.
  • Deliver a meal once or twice a month and share it with your older relative, or help him/her prepare a meal for a few friends or neighbors.

Be sure to provide your elder's helpers with your home and business contact information, and encourage them to call you collect whenever necessary. Remember, too, that other family members and friends can help, even if they aren't nearby. You might ask more distant relatives to assist with such things as sorting and processing financial or insurance paperwork, or calling to arrange services for the elder.

Of course, even if you could manage to care for your aging family member entirely from a distance, you may still want to visit. As a long distance caregiver, however, such visits necessarily will be more than social, and may, in fact, come about suddenly and/or unexpectedly. Although not easy, there are ways to manage both emergency and non-emergency visits with minimal stress, disruption, and expense.

Should You Stay Or Should You Go?

In an emergency, naturally your first and foremost concern will be to get to your older relative quickly. In the event your elder experiences a disaster, such as a fire or flood, his/her doctor may ask you to come right away because of a grave medical condition or serious accident, or perhaps no one has been able to contact the older person. There is no time to assess the situation thoroughly, nor time to plan. Such emergencies require immediate action.

If, however, you are not dealing with such a clear crisis, there are a number of things to consider in determining whether or not an in-person visit is necessary. While it is true you will need to rely on your older relative's perception of the situation to some extent, you can balance his/her input with that of others, as well as what you know about your elder in general. Think about the following:

  • What do the older person's local helpers, especially his/her physician, think about the situation? What do they recommend?
  • What is your elder's style? Does s/he tend to cover things up so as not to worry you? Conversely, does s/he routinely emphasize the worst in any situation?
  • What is your style? Can you tolerate a certain level of anxiety without rushing to your older relative's side immediately, or would you be filled with remorse if you decided not to go and the situation became an emergency?

On the practical side, determining if or when to visit in a non-emergency situation might include consideration of the following:

  • Can you afford the trip right now? Would you realize substantial savings by delaying your travel?
  • Can you take time off from work? Will you use accrued time off? Would the leave be paid or unpaid, and how would your work be covered while you are away? Is a family leave an option for you? Should you consider taking one?
  • What arrangements would you need to make to meet your responsibilities to your spouse and/or children?
  • What would be the result of not visiting, or delaying a visit to your older relative?

As a long distance caregiver, it is normal to experience a certain amount of stress and anxiety. Try not to compare yourself with others, or burden yourself with a lot of "shoulds" and "if onlys." Only you can balance the needs of your older relative, your family, your career, and yourself.

Planning To Care

When you do make a trip to your elder's home, scheduled or not, it is crucial that you spend some time planning your visit. You will want to determine how best to accomplish the three basic goals of an in-person visit: assessing the situation to identify your elder's needs, creating a care plan to meet those needs, and establishing a monitoring process to stay informed of needed changes in the care plan.

Although you have been making regular assessments of your older relative's situation and needs via the telephone and informal support network, it is important that you confirm the major concerns you have identified are really the most important ones. During your visit, you will have the opportunity to observe a great deal about your elder's situation, such as:

  • Is the home clean and safe? Check for unsecured throw rugs, loose stair rails, unsafe water heater settings, etc.
  • Has there been any change in your older relative's grooming habits.
  • Can your elder get around, by car, public transportation, or other means?
  • Do friends and family stop by or call? How often?

In addition to observing, you will want the input of other concerned family members into the development of a care plan for your elder. A family meeting, including the older person, can be a very effective way not only to brainstorm possible ways to provide care, but also to ensure the cooperation and support of others.

All major concerns should be addressed at the family meeting, with as many relevant people present as possible. Your elder's participation is very important, and provides an excellent opportunity for everyone else to find out what s/he wants. Conversation about sensative topics may be difficult, but is crucial to creating a good care plan. After addressing such issues as housework, transportation, meal preparation and companionship, the group can begin to determine how the older relative's most important needs can best be met. Each family member can take on specific tasks; any unmet needs can be addressed by the informal support network, or by retaining professional services. Remember to set up a system whereby you can monitor the care plan, often at first, and then less frequently once you are comfortable that the plan is working well.

Of course, the best laid plans do go away, and there are many reasons why even a good care plan may need adjustment. Perhaps helpers you rely on to provide services to your older relative prove less than reliable, or maybe your elder will not accept the help you have arranged. Most importantly, the needs of the older person will change over time. Emphasize with your support network that you want to be kept informed of any changes in you aging family member's situation so that you can adjust his/her care plan accordingly.

Caring For You

The demands of long distance caregiving are many, and can tax your emotional, financial, and physical resources. Nonetheless, these resources are not limitless, nor can you indefinitely give what you don't have. It is vital that you pay attention to your own needs. Many caregivers find value in support groups, or even just talking to someone who truly understands their situation.

Resources For Further Information

Heath, Angela.
Long Distance Caregiving: A Survival Guide for Far Away Caregivers.
American Source Books, 1993, 121pp., $9.95. Call 303-980-0580 to order.

Lustbader, Wendy, and Nancy R. Hooyman.
Taking Care of Your Aging Family Members, 2nd Edition.
Free Press, 1993, 322 pp., $14.95. Call 1-800-223-2336.

Material in this InfoSheet was excerpted with permission from Long Distance Caregiving. We gratefully acknowledge the author and publisher for their generosity in making this valuable information available.

For more information or a list of other Heritage Planning educational materials on helping your parents, contact:

Richard Smith or Roger Erickson
Professional Educators Benefits Company
Post Office Box 37102
Tallahassee, Florida 32315-7102

Telephone: Richard Smith: 850-385-2627, Roger Erickson: 850-385-5135
In Florida, outside Leon County call: 1-800-260-6573