LESSON TWOWorksheet Handout

Describe what seems to you to be a “good death/” where would you prefer to die, at whatage and whit who or what around you? How much warning would you want beforedying: a day, a week, a month a year? Is there some part of the death and dying processthat you dread?

http://www.lastacts.org/files/misc/Artificialnutritionandhydration.pdf

http://www.lastacts.org/files/misc/glossary.pdf

http://www.lastacts.org/files/misc/CPR-DNR.pdf

http://www.lastacts.org/files/misc/Hospice&palliativecare.pdf

National Institute on Aging Age Page - Planning for Long-Term Care:http://209.70.85.4/engagepages/longterm.htm

Planning for Long-Term Care

Most older people are independent. But later in life – especially in the 80s and 90s – youor someone you know may begin to need help with everyday activities like shopping,cooking, walking, or bathing. For many people, regular or “long-term” care may mean alittle help from family and friends or regular visits by a home health aide. For others whoare frail or suffering from dementia, long-term care may involve moving to a place whereprofessional care is available 24 hours a day.

The good news is that families have more choices in long-term care than ever before.Today, services can provide the needed help while letting you stay active and connectedwith family, friends, and neighbors. These services include home health care, adult daycare, and transportation services for frail seniors as well as foster care, assisted living andretirement communities, and traditional nursing homes.

Planning Ahead

The key to successful long-term care is planning. You or your family may need to make adecision in a hurry, often after an unexpected emergency like a broken hip. Be preparedby getting information ahead of time. That way, you will know what’s available andaffordable before there is a crisis. To start:

$ If you are having trouble with things like bathing, managing finances, or driving, talkwith your doctor and other health care professionals about your need for help. Aspecial type of social worker, called a geriatric case manager, can help you and yourfamily through this complex time by developing a long-term care plan and locatingappropriate services. Geriatric case managers can be particularly helpful when familymembers live a long distance apart.

$ If you are helping a family member or friend, talk about the best way to meet his orher needs. If you need help for yourself, talk with your family. For instance, if you arehaving trouble making your meals, do you want meals delivered by a local programor would you like family and friends to help? Would you let a paid aide in yourhome? If you don’t drive, would you like a friend or bus service to take you to thedoctor or other appointments?

$ Learn about the types of services and care in your community. Doctors, socialworkers, and others who see you for regular care may have suggestions. The AreaAgency on Aging and local and state offices of aging or social services can give youlists of adult day care centers, meal programs, companion programs, transportationservices, or places providing more care.

$ Find out how you may – or may not – be covered by insurance. The FederalMedicare program and private “Medigap” insurance only offer short-term homehealth and nursing home benefits. Contact your state-run Medicaid program aboutlong-term nursing home coverage for people with limited means. Also, your state’sinsurance commission can tell you more about private long-term care policies andoffer tips on how to buy this complicated insurance. These agencies are listed in yourtelephone book, under “Government.”

Be aware that figuring out care for the long term isn’t easy. Needs may change over time.What worked 6 months ago may no longer apply. Insurance coverage is often verylimited and families may have problems paying for services. In addition, rules aboutprograms and benefits change, and it’s hard to know from one year to the next what maybe available.

A Need for More Care

At some point, support from family, friends, or local meal or transportation programsmay not be enough. If you need a lot of help with everyday activities, you may need tomove to a place where care is available around-the-clock. There are two types ofresidential care:

$ Assisted living arrangements are available in large apartment or hotel-like buildingsor can be set up as “board and care” homes for a small number of people. They offerdifferent levels of care, but often include meals, recreation, security, and help withbathing, dressing, medication, and housekeeping.

$ Skilled nursing facilities – “nursing homes” – provide 24-hour services andsupervision. They provide medical care and rehabilitation for residents, who aremostly very frail or suffer from the later stages of dementia.

Sometimes, health care providers offer different levels of care at one site. These“continuing care communities” often locate an assisted living facility next to a nursinghome so that people can move from one type of care to another if necessary. Several offerprograms for couples, trying to meet needs when one spouse is doing well but the otherhas become disabled.

Finding the Right Place

To find the residential program that’s best for you:

$ Ask Questions. Find out about specific facilities in your area. Doctors, friends andrelatives, local hospital discharge planners and social workers, and religiousorganizations can help. Your state’s Office of the Long-Term Care Ombudsman hasinformation about specific nursing homes and can let you know whether there havebeen problems at a particular home. Other types of residential arrangements, like“board and care” homes, do not follow the same Federal, state, or local licensing

requirements or regulations as nursing homes. Talk to people in your community orlocal social service agencies to find out which facilities seem to be well run.

$ Call. Contact the places that interest you. Ask basic questions about vacancies,number of residents, costs and method of payment, and participation in Medicare andMedicaid. Also think about what’s important to you, such as transportation, meals,housekeeping, activities, special units for Alzheimer’s disease, or medication policies.

$ Visit. When you find a place that seems right, go talk to the staff, residents, and, ifpossible, family members of residents. Set up an appointment, but also gounannounced and at different times of the day. See if the staff treats residents withrespect and tries to meet the needs of each person. Check if the building is clean andsafe. Are residents restrained in a, but also go unannounced and at different times ofthe day. See if the staff treats residents with respect and tries to meet the needs ofeach person. Check if the building is clean and safe. Are residents restrained in anyway? Are social activities and exercise programs offered – and enjoyed? Do residentshave personal privacy? Is the facility secure for people and their belongings? Eat ameal there to see if you like the food.

$ Understand. Once you have made a choice, be sure you understand the facility’scontract and financial agreement. It’s a good idea to have a lawyer look them overbefore you sign.

A Smooth Transition

Moving from home to a long-term care facility or nursing home is a big change. It affectsthe whole family. Some facilities or community groups have a social worker who canhelp you prepare for the change. Allow some time to adjust after the move has takenplace.

Regular visits by family and friends are important. They can be reassuring andcomforting. Visits are necessary, too, for keeping an eye on the care that is being given.

Resources

The following organizations and agencies can provide information about assistance andlong-term care:

The Eldercare Locator (1-800-677-1116) can direct you to your Area Agency on Aging.They will give you information on local long-term care resources and programs. Visittheir website at www.eldercare.gov.

The Nursing Home Information Service at the National Council of Senior Citizens,8403 Colesville Road, Suite 1200, Silver Spring, MD 20910 (301-578-8938) hasinformation on community services and offers a free guide on how to select a nursinghome.

The Health Care Financing Administration publishes the “Guide to Choosing aNursing Home” and the annual “Guide to Health Insurance for People with Medicare.”The nursing home guide includes a detailed checklist. Call 1-800-638-6833. Visit theirwebsite at http://cms.hhs.gov/ .

Each state Office of the Long-Term Care Ombudsman visits nursing homes on aregular basis and handles complaints. Find your ombudsman by calling the NationalAssociation of State Units on Aging at 202-898-2578. The association has publicationsabout long-term care and can provide a list of facilities.

Other sources of information include:

The American Association of Homes and Services for the Aging, 901 E Street, N.W.,Suite 500, Washington, D.C. 20004-2011; call 202-783-2242. Visit their website atwww.aahsa.org.

The Assisted Living Federation of America, Suite 400, 10300 Eaton Place, Fairfax, VA22030; call 703-691-8100. Visit their website at www.alfa.org.

The American Health Care Association, 1201 L Street, N.W., Washington D.C. 20005;call 202-842-4444.

The National Citizens’ Coalition for Nursing Home Reform’s publications list isavailable from Suite 202, 1424 16th Street, N.W., Washington, D.C. 20036-2211; call202-332-2275.

For more information about health and aging, contact:

National Institute on AgingInformation CenterP.O. Box 8057Gaithersburg, MD 20898-80571-800-222-22251-800-222-4225 (TTY)Website: www.nia.nih.gov

Alzheimer’s Disease Education and Referral (ADEAR) CenterP.O. Box 8250Silver Spring, MD 20907-82501-800-438-4380Website: www.alzheimers.org

National Institute on AgingU. S. Department of Health and Human ServicesNational Institutes of Health 1998

http://www.lastacts.org/files/misc/Caregiving-general.pdf

http://www.lastacts.org/files/misc/allabouttalking.pdf

http://www.lastacts.org/files/misc/THINKINGAHEAD.pdf

http://www.lastacts.org/files/misc/Questionsforyourdoctor.pdf

Department of Health and Human Services – Administration on Aginghttp://www.eldercare.gov/Eldercare/Public/Home.asp

The Eldercare Locator

This is an interactive website:

The Eldercare Locator is a public service of the U.S. Administration on Aging.The Eldercare Locator connects older Americans and their caregivers withsources of information on senior services. The service links those who needassistance with state and local area agencies on aging and community-basedorganizations that serve older adults and their caregivers.

You may find the information resources you need by following the directionsbelow or you may speak to an Eldercare Locator information specialist by calling1-800-677-1116.

To begin please access the website athttp://www.eldercare.gov/Eldercare/Public/Home.asp

Or call all the Eldercare Locator toll-free at1-800-677-1116. Monday through Friday 9:00 AM to 8:00 PM (ET)

For calls after normal hours of operation:After hours, a message recorder is available for the caller to leave a name and atelephone number. Calls will be returned the next business day.

For TDD/TTY Service:Access your local relay service or dial “711” for your relay operator. Instruct theRelay Operator to connect you to the Eldercare Locator at 1-800-677-1116.

For non-English or Limited English Speakers:Full language line service for 150 languages is available when you call theEldercare Locator.

From Outside the United States:Dial Spherix at 1-301-419-3900. When the operator answers - ask for theEldercare Locator line.