"Carol's situation is not uncommon as all of us with parents, a partner or siblings will be in a caregiving situation in the future," says Mary Brintnall-Peterson, University of Wisconsin-Extension program specialist in aging. "If we live far from relatives, advanced planning can be extremely useful. When everyone is still healthy, talk about what lies ahead. Discuss concerns about their well-being, what they want done and what you can do for them."
These may be sensitive issues, but Brintnall-Peterson suggests approaching them by asking what they would want you to do "if" they had a stroke or heart attack, or developed Alzheimer's. Would they want to be cared for at home, a nursing home or a relative's home? What about finances, an estate plan, a will? Is there a living will or advanced directive? There are many questions that can be answered before a crisis develops. There may also be compromises to work out, depending on whether the person is able to care for themselves, if in-home care is affordable, or assisted living is available.
"Advanced planning can result in less family conflict," Brintnall-Peterson says, "and allows the person being cared for to help make these decisions."
Resources for caregivers
Brintnall-Peterson recommends that you develop a "care notebook" for gathering information. The notebook should include medical information, such as doctors, medications and pharmacy; and contacts for an informal support system, including friends, neighbors, church and clubs. Collect information for a formal support system, including Medicare, social security and home health care. Include financial, legal and insurance information, with numbers for lawyers, insurance agents and others who work with the estate. Locate legal documents such as a will or power of attorney, as well as insurance policies and military records or discharge papers. Keep a list of account numbers, stocks, property and other assets.
"The care notebook will help you assess your relative's needs," says Brintnall-Peterson. "You may want to start with the people who provide informal support. Find out from friends and neighbors if your relative needs help with household chores, meals or shopping. Are they able to get themselves to the store, the bank, to church?"
If someone is already doing something to help, find out if they will continue and ask them to stay in touch with you. Find someone who is willing to call or visit your relative regularly to be sure everything is okay around the house. A friend or church group member may be willing to share meals or help get them out of the house now and then.
You may also need to connect with formal services. Start by contacting the county office on aging in your relative's area, for information and referral services for older citizens. "When you begin to explore formal services, keep your notebook handy," says Brintnall-Peterson." Take note of whom you talk to and what was said. Even though this is a stressful time for you, be calm and positive, as well as assertive about what you need. Ask about eligibility requirements, costs, waiting lists and other options. And keep in mind that your relative may need a combination of informal and formal services."
Realize that your caregiving situation may continue for years, often getting progressively more difficult. It is important to keep track of services, people and phone numbers, as you may need this information in the future. Remember that your role in your relative's life is very important. You are helping this person to live as normal a life as possible. So, be sure to extend a little caregiving to yourself.
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