- Email: [email protected]
Caregiving—learning to cope, learning; the options
AUGUST 1989, VOL. 50, NO 2
AORN J O U R N A L
Elder Care Caregiving-learning
to cope, learning the options
Nine months ago, Marlene Reynolds took her 79-year-oldfather to a nursing home. Her father had lived with her and her fami& for 18 months ajler he was diagnosed with dementia caused by alcoholism Caring for him was more than she could cope with; however, moving him to a nursing home was the hardest decision she had ever made. ‘35 hard to let go-it really is,”she said, “but I had to do it for myself:’’
R
eynolds is now using her experience to help others. As an administrative assistant for Professional Respite Care, Inc, Denver, she understands the despair the caller is going through. The same things Reynolds told herself are what she hears from others: “It’s my responsibility to care for my mother. No one else could do it the way I can.” Reynolds refers the caller to the nurses on staff who assess the person’s situation and discuss his or her options. Ruefully, Marlene wishes she had known about all the options available to a caregiver and had taken advantage of them. Reynolds is part of the “sandwich generation” that cares for their children, husband, and aging parents simultaneously, and works outside the home. In a lifetime, the average woman will spend 17 years caring for a dependent child and 18 years helping a dependent parent, according to a 1988 study by the House of Representatives Select Committee on Aging. This article addresses the stressors facing those in the sandwich generation and the multiple options available to help the aging parent live independently as long as possible. 228
Need for Caregiving
I
n our society, family and friends are accustomed to taking care of elderly people. As the US population continues to age and as institutional care increases in cost, families will become more involved in the caregiving process. According to the US Bureau of the Census, 26 million elderly individuals lived in the United States in 1980, which is 11% of the population. By the year 2000, people aged 65 and older are expected to represent 13%of the population, and by 2050, 20% will be at least 65 years old (Fig 1). According to the House Select Committee on Aging, the demand for long-term care is increasing because there are more people aged 85 years and older. These people are most likely to require extensive health and social services because they are apt to have multiple, chronic conditions. Two factors that have caused an increase in the number of families in caregiving situations are the implementation of diagnosis related groups (DRGs) and the tightened regulations regarding nursing home admissions, according to Susan Cockings Aldridge, director of Aging Services, Area Agencies on Aging, Denver Regional Council of Governments. The DRG payment system limits the number of days a person can stay in the hospital, and often, an elderly person is discharged before he or she has recuperated fully. Aldridge also says that nursing homes can refuse to admit a person if he or she requires too much care. Every year, state area agencies on aging conduct hearings to learn what problems exist in caregiving
AUGUST 1989. VOL. 50, NO 2
AORN JOURNAL
Fig I . Number of people (in millions) age 85 or older, by year. Source: US Bureau of the Census, 1983. Reprinted from Hospitals, 61 no 18 (Sept 20, 1987) copyright 1987, with permission from American Hospital Publkhing, Inc, Chicago
situations. In Colorado, the agency found inadequate support systems in the community to help the caregivers deliver care effectively, Aldridge says. Ed Sheehy, manager of the membership services, National Council of the Area Agencies on Aging, reports that most states have programs that support the elderly person, and that many states are recognizing the need for caregiver support.
Profile of a Caregiver
I
n 1988, the American Association of Retired Persons (AARP) and the Travelers Companies Foundation conducted a national survey of caregiversto determine who are caregiversand what responsibilities and stress are involved in that role. People who care for aging parents usually are
female between the ages of 40 and 60. Two thirds of the caregivers are married, and more than one half are employed either full time (42%)or part time (13%).Thirty-eight percent reported that their caregiving responsibilities interfere with their work. Twenty percent reported losing employee benefits as a result of losing time from work or coming in late. Caregivers help the elderly with one or more activities of daily living: managing finances, grocery shopping, housekeeping, meal preparation, transportation, administering medicine, dressing, bathing, feeding, and using a walker or wheelchair. Caregivers are most likely to be caring for a mother (28%),grandmother (1 2%),father (12%), or spouse (10%).The average age of care recipients is 77, with 24%being more than 85 years of age. Most older people want to be independent and 229
AUGUST 1989. VOL. 50. NO 2
live on their own. In the study, 50% of the care recipients lived in their own homes, but within close proximity to the caregiver. Thirty-seven percent reported sharing a household. After assuming caregiving responsibilities,most caregivers reported a change in life-style. They spent less time with their immediate family, had less time for personal and social activities, and took fewer vacations. Also, they reported paying less attention to their own health. As society continues to be more mobile, adult children will become long-distance caregivers, increasing expenses such as travel and telephone bills. Many caregivers reported using vacation time to visit their parents.
Impact of Caregiving
T
he relationship that exists between adult children and aging parents is critical in determining how they will interact in a caregiving situation. Caregiving can be a positive experience between caregivers and care recipients; however, all too often, the relationship produces frustration, tension, and anger. In the AARP/Travelers study, only 18%of the caregivers reported choosing that role because of a close relationship. Tension results when adult children did not freely choose to become caregivers. In 25% of the cases, caregivers reported they had no choice in the situation and assumed the responsibility because they knew that no one else would do it. Most often, proximity to the parent determines who will be a caregiver. Caregivers often are resentful because caregiving responsibilitiesare not shared equally among siblings or because they must reduce the number of working hours or quit their jobs to provide care. The reason frequently given for adult children having parents move into their home is to pay them back for the care they received as children. Caregivers also think they have failed their parents when they place them in nursing homes. In sharing their home, many caregivers believe that they will be caring for the parent for a short time waiting for the inevitable to occur, according to Karen Thies, MSW, a counselor for Linkages, a community resource center for older adults in
AORN J O U R N A L
Danger Signs for Caregivers Consider it a danger sign if you think it would be selfish to think of yourself 0 do not seem to have any time or place to be alone 0 feel uncomfortable about going away, even for a few hours or a day 0 spend less and less time with friends 0 often feel sad, lonely, or anxious 0 get angry at the person you are taking care of 0 are tired most of the time and dread getting up in the morning 0 are disregarding your own health 0 are overeating, or not eating enough are drinking too much, taking too much medication, or abusing drugs 0 are feeling stretched economically, emotionally, or physically 0 are irritable with your family or friends
Adapted with permksion from Professional Respite Care, Inc, Denver
Denver. Often, parents’ health improves, and the caregiving situation is extended far beyond what the caregiver expected. “The common bond all caregivers share is guilt. No matter what you do, you feel that you cannot do enough,” says Mildred Freeney-Hilton, executive director of Linkages. As a long-distance caregiver, she says the guilt is intensified because she knows she cannot do as much for her mother as she could if she lived in the same city. When becoming caregivers, people must look at the situation realistically. Before assuming total responsibility for aging parents, caregivers should assess how much stress they can comfortably cope with. Too often, caregiversassume they can handle it all. (See “Danger Signs for Caregivers.”) Instead of taking it all on alone, caregivers must learn to ask for help from immediate family, 23I
AUGUST 1989, VOL. SO, NO 2
siblings, neighbors, or church members. Also, businesses that offer respite care or are available to help caregivers provide care. Freeney-Hilton compares the care available at hospitals or nursing homes to that which caregivers can provide. In a hospital, three shifts of personnel are available to care for the patient; at home, caregivers are trying to cover all three shifts. Using this illustration, caregivers usually are able to see why they cannot be up during the night and still be able to work effectively the next day, she said. Thies recommends that caregivers learn to set limits and adhere to those limits. She also recommends that caregivers join support groups. Not only are they relieved of caregiving responsibilities for a few hours, they learn that they are not alone in feeling frustrated.
Knowing the Options
T
he key to being an effective caregiver is preplanning, according to Thies. Although she commonly hears, “My parents are in their 70s and are in terrific health,” Thies urges people to think about what would happen if a parent suffers a stroke. Typically, she does not work with caregivers until such a crisis occurs. Then she receives calls from people saying, “My mother is being released from the hospital tomorrow, but she can’t be left alone. What do I do with her?” Thies recommends involving the elderly in the decision-making process if they are cognizant of the need for help. She also recommends learning what resources are available before a crisis occurs to reduce stress. The best way to learn about available services is to call the local area agency on aging. These agencies are located in every state and offer services such as home-delivered meals, transportation, and home health. The telephone number for the area agency on aging is usually in the government listings (blue pages) or the yellow pages under senior citizens. Other resources for information are senior centers, churches, and physicians. (See “Help for Caregivers.”) Factors that should be considered in determining housing needs include a person’s finances, choice of location, specific needs, personality, and
AORN JOURNAL
Help for Caregivers Alzheimer’s Disease & Related Disorders Association, 70 E Lake St, Suite 600, Chicago, IL 60601, (800) 6210379; [in Illinois (800) 572-6037] American Association of Retired Persons, 1909 K St, NW, Washington, DC 20049 (202) 728-4300 National Association for Home Care, 519 C St NE, Stanton Park, Washington, DC 20002 (202) 547-7424 National Association of Area Agencies on Aging, 600 Maryland Ave SW, Suite 208, Washington, DC 20024 (202) 4847520 National Council on the Aging, 600 Maryland Ave SW, Suite 100, Washington, DC 20024 (202) 479-1200 Older Women’s League, 730 1 lth St NW, Suite 300, Washington, DC 20001 (202) 783-6686
life-style. It also is important to choose a site in which the person can maintain connections with those people he or she already knows. When searching for housing, caregivers should investigateall options, according to Gay DelDuca, MSW, a housing counselor with Choice, a counseling and information resource in Denver. “Many people don’t know that there is more to long-term care than a nursing home,” she says. Adult day care. These services may be used on a regular or part-time basis to provide a break to caregivers. Adult day care is offered in most cities, either through hospitals, churches, nursing homes, city and county governments, or senior centers. Most centers operate 8 AM to 5 PM, five days a week. Although a need exists for extended hours and weekend days, many do not have enough staff or funds to offer that. The typical adult day care program offers socialization, nutrition (ie, hot meals and snacks), structured group activities, wellness checks, and in some cases, transportation. Group activities 233
AORN JOURNAL
AUGUST 1989, VOL. 50, NO 2
Adult day health centers are options for elderly people who otherwise would be placed in nursing homes because of their medical problems. include crafts, chair exercises, excursions, word games, and current events discussions. Andrea Heerdt, manager of Day Break, an adult d a y care center sponsored by Seniors’ Resource Center, Wheat Ridge, Colo, says being able to get along in a group is important in using adult day care. In some situations, Heerdt says many elderly people are so used to being on their own that they are not able to interact in a group. The goal of adult day care is to make the elderly people feel good about themselves. Laura Cavalieri, 79, has been going to adult day care five days a week for three years. “This is a godsend. It breaks the monotony of being alone,” she says. The Day Break adult care group also has a separate group for people with Alzheimer’s disease because their behavior can be upsetting to others. The activities offered are more low-key because people with Alzheimer’s can be frustrated easily. When a family is looking for an adult day care program, Heerdt encourages them to visit the program, interview staff, and speak with the participants and their families. When considering adult day care, families need to investigate factors such as hours of operation, cost or financial assistance,and qualificationsof staff. A trial period is offered so that the elderly can determine if adult day care is an appropriate environment for them. Adult day health center. These centers are an option for elderly people who otherwise would be placed in nursing homes because of their medical problems. The On Lok program originated in the Chinatown area of San Francisco in 1973. It was the first adult day health care program to meet the needs of the frail elderly. In addition to offering structured activities similar to that in adult day care, On Lok offers medical, restorative, and support services seven days a week. The participants spend the night at home. Services include prescription drugs, dentistry, optometry, audiology, podiatry, psychiatry, outpatient laboratory and x-rays, in-home 234
services, physician services, inpatient medical services, hospice, and skilled nursing services. When enrolled in the program, On Lok assumes responsibility for managing and paying for the full continuum of care needs including hospital and nursing home care for each participant. After On Lok acceptsa participant, they cannot be discharged, although individuals may discontinue participation if he or she chooses. On Lok participants are required to use the physicians, hospitals, and other medical services On Lok chooses. On Lok, working in conjunction with the Robert Wood Johnson Foundation, selected 10 demonstration sites in which to replicate the health center model. These sites are Beth Abraham Hospital, Bronx, NY; East Boston Neighborhood Health Center; Providence Medical Center, Portland, Ore; Richland Memorial Hospital/ South Carolina Department of Health and Environmental Control, Columbia; Bienvivir Senior Health Services, El Paso, Tex; Community Care Organization, Milwaukee; New Bethel Life, Chicago; Community Health Resources, Denver; and two unnamed sites in California. Respite care. Services offered through respite care businesses, home health agencies, home care organizations,or visiting nurse associations include personal care, walking, housekeeping, grocery shopping, preparing meals, and pet care. Usually, a nurse makes an in-home assessment and creates a personal care plan. When investigating respite care, the parent or his or her family will need to determine how much of the care may be paid by Medicare, Medicaid, or personal insurance. As an adjunct to professional respite care, the Longmont (Colo) Senior Center is developing a volunteer respite program. With an $1 1,000 grant from the Denver Regional Council of Governments, the senior center has trained volunteers to work with people who need respite care. Rosemary Williams, MSW, family resource
specialist, says the volunteer respite program introduces the concept of respite care to many families. Often a family uses professional respite care in conjunction with her program. Williams modeled the program after other volunteer respite programs in the country. Because she used existing networks, the program is supported by businesses that offer respite care and by all hospitals in the county. Small group homes/house sharing. These options allow elderly people who do not require 24-hour nursing supervision to receive care and nutrition. States may vary, but in Colorado, a group home can offer services to one or two elderly persons without requiring licensure. If three elderly people or more are living in a small group home, licensure is required. Assisted living. This option offers opportunities for older people who are frail, chronically ill, or socially isolated. The people are able to live independently yet have social opportunities, meals, and transportation. Elderly people receive assistance with activities of daily living and taking their medication. Twenty-four hour protective oversight is achieved by installing a pull chain or call light in the apartments so the elderly people can summon emergency help. Nursing homes. This option provides a living arrangement that offers medical, nursing, psychosocial, and rehabilitation services for people who require 24-hour nursing supervision. There are three levels of nursing home care. Skilled nursing. This option is for people who need intensive care and 24-hour-a-day nursing supervision. Intermediate care. This option is suitable for people who do not require round-the-clock nursing, but who are not able to live alone. Custodial care. This option is suitable for many people who need supervision and help with meals and personal care.
Summary
P
replanning and education are the best ways caregivers can help themselves. Thies recommends learning about options before the need arises to alleviate some of the stress. 236
Belonging to support groups is one way that caregivers can help each other. In addition to sharing their problems and concerns, group members recommend that keeping journals help to relieve stress. Reynolds, who took care of her father in her home, says that hindsight is invaluable. “ZfI had known about a company that ensured he would eat meals and take medication, I would have had some relief,” she says. “I hope my experience can help other caregivers.” SUSANSCHLEPP ASSISTANT EDITOR Suggested reading Bloomfield, H H; Felder, L. Making Peace With Your Parents. New York City: Random House, 1983. Eastman, P Kane, A. Respite: Helping Caregivers Keep Elderly Relatives at Home. Washington, DC: National Council of Catholic Women, 1986. Friedman, J. Home Health Care: A Complete Guide for Patients and Their Families. New York City: W W Norton, 1986. Gillies, J. A Guide to CompassionateCare of the Aging.
Nashville, Tenn: Thomas Nelson Publishers, 1985. Home, J. Caregiving. Washington, D C American Association of Retired Persons, 1985. Kenny J; Spicer, S. Caring for Your Aging Parents: A Practical Guide to the Challenges, the Choices.
Cincinnati: St Anthony Messenger Press, 1984. Mace, N. The 36-Hour Day/A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementia Illnesses and Memory Loss in Later Lve. Baltimore: Johns Hopkins University Press, 1981. National Council on Aging. Directory of Adult Day Care in America. Washington, DC: National Council on Aging, 1987. Schwartz, S L.How to Start a Respite Servicefor People with Alzheimer’s and Their Families. New York City: The Brookdale Foundation, 1987. Sew, Dr. You’re Only Old Once. New York City:
Random House, 1986. Tomb, D A. Growing Old A Complete Guide to the Physical, Emotional, and Financial Problems of Aging. New York City: Viking Press, 1984. Professional nurses are invited to submit manuscripts for the “ElderCare”co1umn Manuscriptsfor this column should involve sociological and psychological aspects of aging. Manuscripts or queries should be sent to the Editor, AORN Journal, 10170 E MissbsSippi Ave, Denver, co 80231. As with all manuscripts sent to the Journal, papers submitted for the “Elder Care” column should nor have been previously published or submitted simultaneously to any other publication.
AORN J O U R N A L
Elder Care Caregiving-learning
to cope, learning the options
Nine months ago, Marlene Reynolds took her 79-year-oldfather to a nursing home. Her father had lived with her and her fami& for 18 months ajler he was diagnosed with dementia caused by alcoholism Caring for him was more than she could cope with; however, moving him to a nursing home was the hardest decision she had ever made. ‘35 hard to let go-it really is,”she said, “but I had to do it for myself:’’
R
eynolds is now using her experience to help others. As an administrative assistant for Professional Respite Care, Inc, Denver, she understands the despair the caller is going through. The same things Reynolds told herself are what she hears from others: “It’s my responsibility to care for my mother. No one else could do it the way I can.” Reynolds refers the caller to the nurses on staff who assess the person’s situation and discuss his or her options. Ruefully, Marlene wishes she had known about all the options available to a caregiver and had taken advantage of them. Reynolds is part of the “sandwich generation” that cares for their children, husband, and aging parents simultaneously, and works outside the home. In a lifetime, the average woman will spend 17 years caring for a dependent child and 18 years helping a dependent parent, according to a 1988 study by the House of Representatives Select Committee on Aging. This article addresses the stressors facing those in the sandwich generation and the multiple options available to help the aging parent live independently as long as possible. 228
Need for Caregiving
I
n our society, family and friends are accustomed to taking care of elderly people. As the US population continues to age and as institutional care increases in cost, families will become more involved in the caregiving process. According to the US Bureau of the Census, 26 million elderly individuals lived in the United States in 1980, which is 11% of the population. By the year 2000, people aged 65 and older are expected to represent 13%of the population, and by 2050, 20% will be at least 65 years old (Fig 1). According to the House Select Committee on Aging, the demand for long-term care is increasing because there are more people aged 85 years and older. These people are most likely to require extensive health and social services because they are apt to have multiple, chronic conditions. Two factors that have caused an increase in the number of families in caregiving situations are the implementation of diagnosis related groups (DRGs) and the tightened regulations regarding nursing home admissions, according to Susan Cockings Aldridge, director of Aging Services, Area Agencies on Aging, Denver Regional Council of Governments. The DRG payment system limits the number of days a person can stay in the hospital, and often, an elderly person is discharged before he or she has recuperated fully. Aldridge also says that nursing homes can refuse to admit a person if he or she requires too much care. Every year, state area agencies on aging conduct hearings to learn what problems exist in caregiving
AUGUST 1989. VOL. 50, NO 2
AORN JOURNAL
Fig I . Number of people (in millions) age 85 or older, by year. Source: US Bureau of the Census, 1983. Reprinted from Hospitals, 61 no 18 (Sept 20, 1987) copyright 1987, with permission from American Hospital Publkhing, Inc, Chicago
situations. In Colorado, the agency found inadequate support systems in the community to help the caregivers deliver care effectively, Aldridge says. Ed Sheehy, manager of the membership services, National Council of the Area Agencies on Aging, reports that most states have programs that support the elderly person, and that many states are recognizing the need for caregiver support.
Profile of a Caregiver
I
n 1988, the American Association of Retired Persons (AARP) and the Travelers Companies Foundation conducted a national survey of caregiversto determine who are caregiversand what responsibilities and stress are involved in that role. People who care for aging parents usually are
female between the ages of 40 and 60. Two thirds of the caregivers are married, and more than one half are employed either full time (42%)or part time (13%).Thirty-eight percent reported that their caregiving responsibilities interfere with their work. Twenty percent reported losing employee benefits as a result of losing time from work or coming in late. Caregivers help the elderly with one or more activities of daily living: managing finances, grocery shopping, housekeeping, meal preparation, transportation, administering medicine, dressing, bathing, feeding, and using a walker or wheelchair. Caregivers are most likely to be caring for a mother (28%),grandmother (1 2%),father (12%), or spouse (10%).The average age of care recipients is 77, with 24%being more than 85 years of age. Most older people want to be independent and 229
AUGUST 1989. VOL. 50. NO 2
live on their own. In the study, 50% of the care recipients lived in their own homes, but within close proximity to the caregiver. Thirty-seven percent reported sharing a household. After assuming caregiving responsibilities,most caregivers reported a change in life-style. They spent less time with their immediate family, had less time for personal and social activities, and took fewer vacations. Also, they reported paying less attention to their own health. As society continues to be more mobile, adult children will become long-distance caregivers, increasing expenses such as travel and telephone bills. Many caregivers reported using vacation time to visit their parents.
Impact of Caregiving
T
he relationship that exists between adult children and aging parents is critical in determining how they will interact in a caregiving situation. Caregiving can be a positive experience between caregivers and care recipients; however, all too often, the relationship produces frustration, tension, and anger. In the AARP/Travelers study, only 18%of the caregivers reported choosing that role because of a close relationship. Tension results when adult children did not freely choose to become caregivers. In 25% of the cases, caregivers reported they had no choice in the situation and assumed the responsibility because they knew that no one else would do it. Most often, proximity to the parent determines who will be a caregiver. Caregivers often are resentful because caregiving responsibilitiesare not shared equally among siblings or because they must reduce the number of working hours or quit their jobs to provide care. The reason frequently given for adult children having parents move into their home is to pay them back for the care they received as children. Caregivers also think they have failed their parents when they place them in nursing homes. In sharing their home, many caregivers believe that they will be caring for the parent for a short time waiting for the inevitable to occur, according to Karen Thies, MSW, a counselor for Linkages, a community resource center for older adults in
AORN J O U R N A L
Danger Signs for Caregivers Consider it a danger sign if you think it would be selfish to think of yourself 0 do not seem to have any time or place to be alone 0 feel uncomfortable about going away, even for a few hours or a day 0 spend less and less time with friends 0 often feel sad, lonely, or anxious 0 get angry at the person you are taking care of 0 are tired most of the time and dread getting up in the morning 0 are disregarding your own health 0 are overeating, or not eating enough are drinking too much, taking too much medication, or abusing drugs 0 are feeling stretched economically, emotionally, or physically 0 are irritable with your family or friends
Adapted with permksion from Professional Respite Care, Inc, Denver
Denver. Often, parents’ health improves, and the caregiving situation is extended far beyond what the caregiver expected. “The common bond all caregivers share is guilt. No matter what you do, you feel that you cannot do enough,” says Mildred Freeney-Hilton, executive director of Linkages. As a long-distance caregiver, she says the guilt is intensified because she knows she cannot do as much for her mother as she could if she lived in the same city. When becoming caregivers, people must look at the situation realistically. Before assuming total responsibility for aging parents, caregivers should assess how much stress they can comfortably cope with. Too often, caregiversassume they can handle it all. (See “Danger Signs for Caregivers.”) Instead of taking it all on alone, caregivers must learn to ask for help from immediate family, 23I
AUGUST 1989, VOL. SO, NO 2
siblings, neighbors, or church members. Also, businesses that offer respite care or are available to help caregivers provide care. Freeney-Hilton compares the care available at hospitals or nursing homes to that which caregivers can provide. In a hospital, three shifts of personnel are available to care for the patient; at home, caregivers are trying to cover all three shifts. Using this illustration, caregivers usually are able to see why they cannot be up during the night and still be able to work effectively the next day, she said. Thies recommends that caregivers learn to set limits and adhere to those limits. She also recommends that caregivers join support groups. Not only are they relieved of caregiving responsibilities for a few hours, they learn that they are not alone in feeling frustrated.
Knowing the Options
T
he key to being an effective caregiver is preplanning, according to Thies. Although she commonly hears, “My parents are in their 70s and are in terrific health,” Thies urges people to think about what would happen if a parent suffers a stroke. Typically, she does not work with caregivers until such a crisis occurs. Then she receives calls from people saying, “My mother is being released from the hospital tomorrow, but she can’t be left alone. What do I do with her?” Thies recommends involving the elderly in the decision-making process if they are cognizant of the need for help. She also recommends learning what resources are available before a crisis occurs to reduce stress. The best way to learn about available services is to call the local area agency on aging. These agencies are located in every state and offer services such as home-delivered meals, transportation, and home health. The telephone number for the area agency on aging is usually in the government listings (blue pages) or the yellow pages under senior citizens. Other resources for information are senior centers, churches, and physicians. (See “Help for Caregivers.”) Factors that should be considered in determining housing needs include a person’s finances, choice of location, specific needs, personality, and
AORN JOURNAL
Help for Caregivers Alzheimer’s Disease & Related Disorders Association, 70 E Lake St, Suite 600, Chicago, IL 60601, (800) 6210379; [in Illinois (800) 572-6037] American Association of Retired Persons, 1909 K St, NW, Washington, DC 20049 (202) 728-4300 National Association for Home Care, 519 C St NE, Stanton Park, Washington, DC 20002 (202) 547-7424 National Association of Area Agencies on Aging, 600 Maryland Ave SW, Suite 208, Washington, DC 20024 (202) 4847520 National Council on the Aging, 600 Maryland Ave SW, Suite 100, Washington, DC 20024 (202) 479-1200 Older Women’s League, 730 1 lth St NW, Suite 300, Washington, DC 20001 (202) 783-6686
life-style. It also is important to choose a site in which the person can maintain connections with those people he or she already knows. When searching for housing, caregivers should investigateall options, according to Gay DelDuca, MSW, a housing counselor with Choice, a counseling and information resource in Denver. “Many people don’t know that there is more to long-term care than a nursing home,” she says. Adult day care. These services may be used on a regular or part-time basis to provide a break to caregivers. Adult day care is offered in most cities, either through hospitals, churches, nursing homes, city and county governments, or senior centers. Most centers operate 8 AM to 5 PM, five days a week. Although a need exists for extended hours and weekend days, many do not have enough staff or funds to offer that. The typical adult day care program offers socialization, nutrition (ie, hot meals and snacks), structured group activities, wellness checks, and in some cases, transportation. Group activities 233
AORN JOURNAL
AUGUST 1989, VOL. 50, NO 2
Adult day health centers are options for elderly people who otherwise would be placed in nursing homes because of their medical problems. include crafts, chair exercises, excursions, word games, and current events discussions. Andrea Heerdt, manager of Day Break, an adult d a y care center sponsored by Seniors’ Resource Center, Wheat Ridge, Colo, says being able to get along in a group is important in using adult day care. In some situations, Heerdt says many elderly people are so used to being on their own that they are not able to interact in a group. The goal of adult day care is to make the elderly people feel good about themselves. Laura Cavalieri, 79, has been going to adult day care five days a week for three years. “This is a godsend. It breaks the monotony of being alone,” she says. The Day Break adult care group also has a separate group for people with Alzheimer’s disease because their behavior can be upsetting to others. The activities offered are more low-key because people with Alzheimer’s can be frustrated easily. When a family is looking for an adult day care program, Heerdt encourages them to visit the program, interview staff, and speak with the participants and their families. When considering adult day care, families need to investigate factors such as hours of operation, cost or financial assistance,and qualificationsof staff. A trial period is offered so that the elderly can determine if adult day care is an appropriate environment for them. Adult day health center. These centers are an option for elderly people who otherwise would be placed in nursing homes because of their medical problems. The On Lok program originated in the Chinatown area of San Francisco in 1973. It was the first adult day health care program to meet the needs of the frail elderly. In addition to offering structured activities similar to that in adult day care, On Lok offers medical, restorative, and support services seven days a week. The participants spend the night at home. Services include prescription drugs, dentistry, optometry, audiology, podiatry, psychiatry, outpatient laboratory and x-rays, in-home 234
services, physician services, inpatient medical services, hospice, and skilled nursing services. When enrolled in the program, On Lok assumes responsibility for managing and paying for the full continuum of care needs including hospital and nursing home care for each participant. After On Lok acceptsa participant, they cannot be discharged, although individuals may discontinue participation if he or she chooses. On Lok participants are required to use the physicians, hospitals, and other medical services On Lok chooses. On Lok, working in conjunction with the Robert Wood Johnson Foundation, selected 10 demonstration sites in which to replicate the health center model. These sites are Beth Abraham Hospital, Bronx, NY; East Boston Neighborhood Health Center; Providence Medical Center, Portland, Ore; Richland Memorial Hospital/ South Carolina Department of Health and Environmental Control, Columbia; Bienvivir Senior Health Services, El Paso, Tex; Community Care Organization, Milwaukee; New Bethel Life, Chicago; Community Health Resources, Denver; and two unnamed sites in California. Respite care. Services offered through respite care businesses, home health agencies, home care organizations,or visiting nurse associations include personal care, walking, housekeeping, grocery shopping, preparing meals, and pet care. Usually, a nurse makes an in-home assessment and creates a personal care plan. When investigating respite care, the parent or his or her family will need to determine how much of the care may be paid by Medicare, Medicaid, or personal insurance. As an adjunct to professional respite care, the Longmont (Colo) Senior Center is developing a volunteer respite program. With an $1 1,000 grant from the Denver Regional Council of Governments, the senior center has trained volunteers to work with people who need respite care. Rosemary Williams, MSW, family resource
specialist, says the volunteer respite program introduces the concept of respite care to many families. Often a family uses professional respite care in conjunction with her program. Williams modeled the program after other volunteer respite programs in the country. Because she used existing networks, the program is supported by businesses that offer respite care and by all hospitals in the county. Small group homes/house sharing. These options allow elderly people who do not require 24-hour nursing supervision to receive care and nutrition. States may vary, but in Colorado, a group home can offer services to one or two elderly persons without requiring licensure. If three elderly people or more are living in a small group home, licensure is required. Assisted living. This option offers opportunities for older people who are frail, chronically ill, or socially isolated. The people are able to live independently yet have social opportunities, meals, and transportation. Elderly people receive assistance with activities of daily living and taking their medication. Twenty-four hour protective oversight is achieved by installing a pull chain or call light in the apartments so the elderly people can summon emergency help. Nursing homes. This option provides a living arrangement that offers medical, nursing, psychosocial, and rehabilitation services for people who require 24-hour nursing supervision. There are three levels of nursing home care. Skilled nursing. This option is for people who need intensive care and 24-hour-a-day nursing supervision. Intermediate care. This option is suitable for people who do not require round-the-clock nursing, but who are not able to live alone. Custodial care. This option is suitable for many people who need supervision and help with meals and personal care.
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replanning and education are the best ways caregivers can help themselves. Thies recommends learning about options before the need arises to alleviate some of the stress. 236
Belonging to support groups is one way that caregivers can help each other. In addition to sharing their problems and concerns, group members recommend that keeping journals help to relieve stress. Reynolds, who took care of her father in her home, says that hindsight is invaluable. “ZfI had known about a company that ensured he would eat meals and take medication, I would have had some relief,” she says. “I hope my experience can help other caregivers.” SUSANSCHLEPP ASSISTANT EDITOR Suggested reading Bloomfield, H H; Felder, L. Making Peace With Your Parents. New York City: Random House, 1983. Eastman, P Kane, A. Respite: Helping Caregivers Keep Elderly Relatives at Home. Washington, DC: National Council of Catholic Women, 1986. Friedman, J. Home Health Care: A Complete Guide for Patients and Their Families. New York City: W W Norton, 1986. Gillies, J. A Guide to CompassionateCare of the Aging.
Nashville, Tenn: Thomas Nelson Publishers, 1985. Home, J. Caregiving. Washington, D C American Association of Retired Persons, 1985. Kenny J; Spicer, S. Caring for Your Aging Parents: A Practical Guide to the Challenges, the Choices.
Cincinnati: St Anthony Messenger Press, 1984. Mace, N. The 36-Hour Day/A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementia Illnesses and Memory Loss in Later Lve. Baltimore: Johns Hopkins University Press, 1981. National Council on Aging. Directory of Adult Day Care in America. Washington, DC: National Council on Aging, 1987. Schwartz, S L.How to Start a Respite Servicefor People with Alzheimer’s and Their Families. New York City: The Brookdale Foundation, 1987. Sew, Dr. You’re Only Old Once. New York City:
Random House, 1986. Tomb, D A. Growing Old A Complete Guide to the Physical, Emotional, and Financial Problems of Aging. New York City: Viking Press, 1984. Professional nurses are invited to submit manuscripts for the “ElderCare”co1umn Manuscriptsfor this column should involve sociological and psychological aspects of aging. Manuscripts or queries should be sent to the Editor, AORN Journal, 10170 E MissbsSippi Ave, Denver, co 80231. As with all manuscripts sent to the Journal, papers submitted for the “Elder Care” column should nor have been previously published or submitted simultaneously to any other publication.