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So Far Away:
Twenty Questions for Long-Distance Caregivers
Introduction
1. What is long-distance caregiving?
2. How will I know if help is needed?
» 3. What can I really do from far away?
4. How can my family decide who does what?
5. Are there things I can do that will help me feel less frustrated?
6. What is a geriatric care manager and how can I find one?
7. How can I keep up with my mom’s medical and health care?
8. How can I make the most of a visit with my parent's doctor?
9. How on earth can my parents afford everything they need?
10. What kinds of documents do we need?
11. Should I encourage my parents to get more help?
12. How can we make the house safer for my mother who has Alzheimer's disease?
13. How can I lighten the load for my mother?
14. How can I help my folks decide if it's time for them to move?
15. What happens if my mother gets too sick to stay at home?
16. How is it that long-distance caregiving makes me feel so guilty all the time?
17. How can I be sure my father's caregiver isn't mistreating him?
18. How can I help my parents think about their future health care preferences?
19. What is the difference between an advance directive and a living will?
20. What if I'm told my mom only has a few months to live?
Resources: Where to Turn for Help
 
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3. What can I really do from far away? I don’t feel comfortable just jumping in.

Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver who is in the home. Long-distance caregivers can play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating assisted living and nursing home care. Some long-distance caregivers help a parent pay for care, while others step in to manage finances.

Caregiving is not easy for anyone, not for the caregiver and not for the care recipient. From a distance, it may be especially hard to feel that what you are doing is enough, or that what you are doing is important. It usually is.

Free Information Available from NIA
NIA has many free publications including the popular Age Pages—informative fact sheets for older people. There are over 40 titles in the series, many of which are available in Spanish. The Resources section of this booklet has information on how to contact NIA.

Long-distance caregivers might find the following titles of particular interest:

• Home Safety for People with Alzheimer’s Disease
• Good Nutrition: It’s a Way of Life
• Older Drivers
• Caregiver Guide: Tips for Caregivers of People With Alzheimer’s Disease
• Long-Term Care: Choosing the Right Place

Some Good Ideas

  • Know what you need to know. Experienced caregivers recommend that you learn as much as you can about your parent’s illness and treatment. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in disease management. It can also make talking with the doctor easier. Learn as much as you can about the resources available. Make sure at least one family member has written permission to receive medical and financial information. Try putting together a notebook, or something similar, that includes all the vital information about health care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers.
  • Plan your visits. When visiting your parent, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your parent ahead of time and finding out what he or she would like to do. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to go to the mall or to visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother’s physician? Decide on the priorities and leave other tasks to another visit.
  • Remember to actually spend time visiting with your family member. Try to make time to do things unrelated to being a caregiver. Maybe you could rent a movie to watch with your parents, or visit with old friends or other family members. Perhaps your aunt or uncle would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone.
  • Get in touch and stay in touch. Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff to get up-to-date information about a parent’s health and progress. If your parent is in a nursing home, you can request occasional teleconferences with the facility’s staff. Some families schedule conference calls so several relatives can participate in one conversation. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. The human touch is important too. Try to find people in your parent’s community who can be your eyes and ears and provide a realistic view of what is going on. In some cases, this will be your other parent.
  • Help your parent stay in contact. For one family, having a private phone line installed in their father’s nursing home room allowed him to stay in touch. For another family, giving the grandmother a cell phone (and then teaching her to use it) gave everyone some peace of mind. You can program telephone numbers (such as doctors’, neighbors’, and your own) into your parent’s phone so that he or she can speed-dial contacts. Such simple strategies can be a lifeline for you and your parent. But be prepared—you may find you are inundated with calls from your parent. It’s good to think in advance about a workable approach for coping with numerous calls.
  • Get a phone book, either hardcopy or online, that lists resources in your parent’s neighborhood. Having a copy of the phone book for your parent’s city or town can be really helpful. The “Blue Pages” can provide an easy guide to State and local services available in your parent’s hometown.

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Page last updated Jan 31, 2008