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Long-distance Caregiving

"Long-distance caregiver" is a term used to describe an increasing number of adult children who live in one part of the country but are trying to monitor an aging parent's health and well-being in another. Most sons and daughters who do this experience worry, frustration and guilt. How do you know if Mom is eating right? Why didn't she tell you she was going in for that test? Why did you take this job so far away? How many voice-mail messages do you have to leave before her doctor calls you back? What's going on there? The urge is to hop on a plane and go find out. The reality in most cases is commitments to spouse, children and a job, not to mention the expense of airfares, make that impossible.

Here is a list of special things to consider for "long-distance" caregivers:

Contact information. Make sure your name, address and phone number are posted by your parent's phone with a note asking that you be contacted if there is a problem. Be certain your parent's doctor has the same information. The same holds true for any home-care services people (visiting nurse, housekeeper, physical therapist and so on) who may be working with your mother or father.

Neighbors and friends. Give your name, address and phone number to the neighbor or the friend who is already in regular contact with your parent and get his or her number. Ask if you can give him or her a call if for some reason you can't reach your parent. Maybe you can arrange to check in with this person once in a while just to see how Mom is doing.

Plan in advance. If your parent is going to be released from a hospital or nursing home, ask to speak to the discharge planner, as soon as possible. This is the staff member who figures out what services your parent will need and how frequently he or she needs them. Don't wait until the day your parent is going home. Sometimes there's not much notice on "discharge day." So do some planning in advance.

Contact local resources. If you're looking for health or social services in your parents' area, call the telephone directory for their area code and ask for "Senior Information and Assistance" or call the toll-free Eldercare Locator number: 1-800-677-1116. Most areas have case management services. Through a state-subsidized or private program, a case manager can coordinate the team of health and home-care professionals who will be working with your parent.

When you talk to your parent on the phone

Pay attention. Is there something new going on? For example, is she talking about friends dying? Is she suddenly concerned about a particular ache or pain? Don't discount comments because you've "heard it all before." Listen to the message between the lines. Is she afraid of being alone? Is she worried that she may be have a new medical problem?

Talk to both parents. If both parents are still living, spend time talking to each alone. Ask Mom how she's doing and ask her how Dad is doing. Ask Dad the same.

Call frequently and regularly. Agree on a time that's good for both of you. "I'll call you on Monday evening." "I'll call Thursday morning." But be careful. Mark it on your calendar so you don't forget. A week probably passes very quickly for you. That may not be true for your parent who really looks forward to hearing from you and will worry about you if you fail to call.

Make a list. Suggest that your parent jot down a few notes between calls to get ready for the next one. You do the same. That way neither of you will forget something important that needs to be discussed or a bit of news that will be fun to share.

When you're going to visit your parent

The telephone can be an invaluable tool for monitoring your parent's well-being but it works best when coupled with visits to Mom or Dad. Those visits can go a long way toward meeting the needs of your parent and helping calm your worries, too. Here are some suggestions for going home:

Plan ahead. Maybe you want to call Dad's doctor and others working with him and arrange appointments to meet and discuss how he's doing. If possible, include your father in any meetings. Waiting until you are at Dad's house to begin setting up meetings means trying to make arrangements on short notice and spending time on the phone that could be better spent with him.

Be prepared for medical questions. When you do meet the doctor, have your list of questions and concerns ready, based on the what Mom has said -- and not said -- during your telephone conversations, on what you have observed during this visit with her, and on the most current assessment. How have your parent's health and living conditions changed since the last time you were home? What needs have become more prominent? Are there new ones?

Don't panic. You may encounter what seem like drastic changes, including a great deal of deterioration. Because you haven't witnessed those changes on a day-by-day or week-by-week basis, the difference between now and six months ago may seem more startling to you than to your parent or a sibling who has been around more frequently. Their failure to mention these changes to you does not mean they have been hiding them from you, they simply may not see them. You each have a unique perspective; all are helpful when trying to make an accurate evaluation.

Don't charge into town with all the answers. This will often meet stiff resistance, not just from Dad but from your siblings who may live closer and also have been playing a role in taking care of him. Ask how you can help and offer suggestions. Work with your father and siblings.

Think small. Prioritize the needs. Begin with suggestions that are least threatening and that allow your parent the greatest amount of independence. Maybe this is the visit to set up some sort of housekeeping. Next time may be the right time to arrange for assistance with finances. But begin that process now by raising the issue with your parent. You are not going to fix all the problems in one visit. Give yourself time. Becoming agitated with yourself, your parent or your siblings only gets in the way.

Remember that your role as long-distance caregiver is something new not just to you but to our society. In days gone by, most members of the extended family lived close to one another and those who did move far away returned infrequently, if at all. Automobiles, interstate highways, jets, cell phones and the Internet made our world smaller and made the role of long-distance caregiver possible.