FREQUENTLY ASKED QUESTIONS ABOUT
LONG DISTANCE CAREGIVING

The act of caregiving has been going on for centuries. What has changed is that many people are living away from their families. Caregiving is considered long distance if it requires travel of at least one hour to reach your loved one. If you are a long distance caregiver, you are not alone. Nearly 7 million Americans manage care for an older relative or friend who lives at a distance. The following information offers suggestions on how to evaluate, plan and organize your resources and time to maximize your ability to provide support from a distance.

Shortly after my father’s medical diagnosis, I went home to visit. He reassured me he could take care of himself, but I am not convinced. How can I help? During your visits, assess your loved one’s situation. A person may be willing to give up a great deal in order to live independently in their own home. Older persons should maintain control over their own decision making as long as there is no threat to their physical and mental wellbeing. Talk with your relative about your concerns. Be careful not to anger or make your loved one defensive; rather involve your relative in recognizing and solving the problem(s) at hand. Remember your relative’s perception of the situation may be very different from yours. You may think your loved one is no longer capable of performing certain tasks, when, in fact, all that is needed is more time for your relative to complete the task. Identify the type of help your relative thinks is needed and would be willing to accept. Remember to be sensitive and caring and treat your loved one with respect. Ask yourself, how would I feel if my relative was getting involved in my personal life?

What is involved in creating a plan of care that provides the help and support my loved one needs and is willing to accept? Together with your relative create a plan of care that may include both informal and formal supports. Informal Support: Other family members may already be (or want to be) involved in the care of your relative. Meet with your family members to decide how to work together effectively as a team. Also, identify friends, neighbors and members of faith groups, associations and societies to which your relative may belong and who may be available to provide assistance. Try not to overwhelm people, but be sure to openly discuss what types of help they may be willing and able to perform. Be as direct as possible and make sure all understand the situation and share your concerns. Introduce yourself to everyone who will be helping your relative, if you do not already know them. Keep a list of their phone numbers and addresses. Let them know they can call you collect anytime day or night if they are worried about your loved one. Develop ways to show appreciation and recognition of the help they are giving (such as, friendly phone calls, thank you notes, cards etc.). Formal Support: Formal support is provided by public and private agencies that offer professional health and social services for the elderly. Educate yourself about resources and services that are available in your relative’s community. Contact the Area Agency on Aging serving your relative’s community to determine which local agencies provide the type of help you are looking for. Pima Council on Aging (PCOA) is the Area Agency on Aging serving older adults residing in Pima County. PCOA can help you identify local resources and services as well as connect you with the Area Agencies on Aging serving other geographic locations throughout the United States. Another resource is the Eldercare Locator service (Ph: 1-800-677-1116; Mon.-Fri.; 9am-8pm Eastern Time), a nationwide program that will identify the Area Agency on Aging and other service providers located in your relative’s community. Communities vary widely in the types of services they offer the elderly. Some considerations include: Are there publicly funded professional services available? If so, are there waiting lists for the services your relative needs? Are there co-payments for these services? What services are privately available? What are the associated costs? How are services monitored to determine the quality of care being provided?

What do I need to do for myself in order to prepare for what may lie ahead as a long distance caregiver? As a long distance caregiver, you must come to terms with what you can and cannot do. You will need to determine how much assistance you are willing and able to provide. You should follow a course that fits your personal strengths, resources and life style. Make the most of visits with your relative. Each visit should be balanced between accomplishing business matters, time to enjoy your loved one’s company, as well as observing and monitoring the overall situation. Plan in advance what you would like to undertake during the visit, such as: gathering medical, financial and legal information; visits to local social service agencies, residential housing or assisted living facilities; entertaining and socializing with your relative, family and friends; reminiscing; having heart-to-heart conversations with your relative, if appropriate, etc. Since long distance caregiving means regular telephone calls, look into saving plans and discounts on long distance telephone service. You will need to be prepared for emergencies and if necessary be ready to travel at a moments notice. You may want to consider: keeping your car in good repair; making sure you have a valid driver’s license and current auto insurance; collecting current bus, train and airline schedules; and keeping your travel documents current. Put aside money in a special fund to pay for such trips/visits. Assess your caregiving responsibilities considering your other obligations, such as your health, family and work. You may need to plan ahead at work to have Family Leave or personal days available in case an unexpected visit to your relative is needed.

What do I need to discuss with my employer about my caregiving responsibilities? You and your employer may want to arrange a schedule for you to take time off every few months to visit your relative. It is better not to wait for a crisis situation but to discuss your plans with your employer in advance. You may have the right to receive Family Medical Leave. The Family Medical Leave Act of 1993, grants employees of firms with more than 50 employees the right to take up to 12 weeks leave of absence without pay in a 12-month period to take care of a child, family member or yourself with a serious illness and still be guaranteed a job and continuation of benefits. You are able to take this leave in portions of time, i.e., a few hours a week, or a day a month, or a week every few months. Check with your employer to see: 1) if your vacation/sick time can be applied to the time you take off, and 2) if you must be employed at your current job for a certain length of time before you are eligible for Family Medical Leave.

Sometimes I am not sure if my concerns about my loved one are significant problems or not. How do I know when the situation is serious enough to require immediate action? If you are dealing with an obvious emergency situation your foremost concern should be to get to your loved one quickly. Crisis situations that demand your immediate attention include: a serious accident or medical condition, or if no one has been able to contact your relative. If the situation is not an emergency, you may want to ask yourself the following questions to help determine whether or not a personal visit is necessary:

• What do your relative’s local support persons (both informal and formal) think about the situation? What does your relative’s primary physician recommend?
• What is your relative’s style? For example, the tendency to underestimate or exaggerate the seriousness of a situation.
• What is your style? How much anxiety/stress can you tolerate before deciding to go? More practical considerations include:
• Can you afford the trip right now?
• Is work a consideration? Do you have accrued vacation and/or sick time? Are you eligible for Family Medical Leave?
• What arrangements have you made, or do you need to make, to meet your responsibilities to your spouse, children and other household members?

I’ve been thinking about either relocating to be closer to my relative, having my relative relocate to a location within my community, or perhaps having my relative live with me and my family. What should I consider before making my final decision? Talk with your relative about these alternatives in advance, before a crisis situation occurs. Factors to consider before moving or relocating an older relative include:

• Does your relative want to live in your city or within your household? What are your relative’s needs for independence and familiarity with friends and community? It may be difficult to leave old friends and make new friends in a different city.
• Would your relative be willing to relocate to assisted living or some other supportive living environment within your community? Many times older persons do not want to live in the same household as their adult children.
• What housing options are available for your relative in your city? How will housing be paid for?
• What publicly funded community resources are available and accessible to help your relative, if needed? States differ in what services are available as well as eligibility criteria for participation in services and programs.
• Be realistic about what it would take to live again with your parent in their house or in yours. Would this be the best situation for both of you? Consider having your relative for a visit in order to evaluate whether living together in the same household is a possible alternative.
• What is your emotional and physical capability to deal with your
  relative’s care needs?
  
• What is your past relationship with your relative? Are there any
  unresolved conflicts with your relative? If so, consider if resolution is
  possible before moving your relative.
  
• What safety, privacy and space modifications would have to be made to
  your home to accommodate your relative’s needs?
  
• What are your needs, your relative’s needs and the needs of other
  household members? What lifestyle differences exist?
  
• How long do you expect the arrangement to last?

TIPS FOR LONG DISTANCE CAREGIVERS

• Visit as often as possible and make the most of your visits. Be observant when you are visiting. Do you notice anything new or unusual in your relative’s health and functional status?
• Discuss your concerns with family members, call a family meeting if possible.
• Allow yourself time to search the Internet and other information sources about medical concerns, local resources and services and caregiving information.
• Establish a routine. Stay in regular contact, either by telephone, e-mail or letters. Send news-like letters about events in your life and at the same time make friendly reminders about preparations or things they may have forgotten or postponed doing. Your emotional support is important and your advice in helping them make decisions is a form of caregiving. Try to talk to both of your parents at the same time by having one get on the extension phone.
• Set-up a list of telephone numbers, e-mail and mailing addresses of relatives and friends to keep them informed.
• Take notes. Write down highpoints, dates and times of conversations with health professionals and personal helpers.
• Create a log or a journal to keep track of important information, such as: notes and observations on your relative’s health status, names and contact information for helpers, travel information, legal, financial and insurance information, etc.
• Contact the Area Agency on Aging serving your relative’s community. Also, obtain a copy of the Yellow Pages for your relative’s city/community. It will help you locate local services and agencies in your relative’s community while you are at home. Ordering a directory for mail delivery can be very expensive. Instead pick-up one free at your relative’s local phone service location. Also, you can access the Yellow Pages and White Pages on-line at: www.Smartpages.com
• Assess housing features that may need modification to support safe ambulation and other activities.
• Learn about helpful products and assistive devices, such as a personal emergency response system (a device that summons emergency assistance services when the wearer presses a button).
• Be aware of hidden demands and expectations placed on caregivers by society and culture that may contribute to feelings of guilt and isolation.
• Don’t feel you have to stick with one solution if it isn’t working out. Be flexible.
• Trust your feelings and intuition. Sometimes the ones we love hold back information not wanting to upset us.
• Learn to give graciously so that parents don’t sense resentment or hostility.

Prepared for Pima Council on Aging by the Arizona Center on Aging, the University of Arizona®