Picture of elderly woman looking at documents
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
 
National Institute on Aging > Health > Publications > So Far Away: Twenty Questions for Long-Distance Caregivers
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19. What is the difference between an advance directive and a living will? The terms are confusing. Since my father is still relatively healthy, what kinds of instructions should I help him think about now?

Advance directives are oral and written instructions about future medical care should your parent become unable to make decisions (for example, unconscious or too ill to communicate). Each State regulates the use of advance directives differently. A living will is one type of advance directive. It takes effect when the patient is terminally ill.

Advance directives are not set in stone. A patient can revise and update the contents as often as he or she wishes. Patients and caregivers should discuss these decisions—and any changes in them—and keep the health care team informed. Everyone involved should be aware of your parents’ treatment preferences. Because State laws vary, check with your Area Agency on Aging, a lawyer, or financial planner. They may have information on wills, trusts, estates, inheritance taxes, insurance, Medicare, and Medicaid.

The person who has the authority to make medical decisions on another person’s behalf is called a healthcare proxy. The terms “healthcare proxy” and “healthcare agent” or “surrogate” are used interchangeably. These responsibilities are called “durable” (for example, you may hear the phrase “durable power of attorney”) because they remain in effect even if your parent is unable to make decisions. Most people appoint a close friend or family member. Some people turn to a trusted member of the clergy or a lawyer. The designated person should be able to understand the treatment choices. Know your parents' values, and support their decisions.

The decision to name a healthcare proxy is extremely important. A written document, kept in the medical record and identifying the designated proxy, should always be up-to-date.

Durable medical power of attorney forms do not give explicit guidance to the proxy about what decisions to make. Many States have developed forms that combine the intent of the durable power of attorney (to have an advocate) and the intent of the living will (to state choices for treatment at the end of life). These combination forms may be more effective than either of the two used individually. Each State regulates advance directives differently, so you will need to consult with the physician, nurse, social worker, or family lawyer to know what is required. It’s also a good idea to check to make sure that all financial matters, including wills and life insurance policies, are in order.

What other information should I keep track of?
The answer to this question is different for every family. You might want to help organize the following information and update it as needed. This list is just a starting point.

  • Full legal name and residence
  • Birth date and place
  • Social Security number
  • Employer(s) and dates of employment
  • Education and military records
  • Sources of income and assets; investment income (stocks, bonds, property)
  • Insurance policies, bank accounts, deeds, investments, and other valuables
  • Most recent income tax return
  • Money owed, to whom, and when payments are due
  • Credit card and charge account names and numbers

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Page last updated Jan 31, 2008