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I. Care giving as a Function of Adulthood:

A. Caring For Young Children

1. Most people who marry have children. Caring for young children is seen as a normative function for adults. It is  generally a planned for and anticipated adult stage. 

This begins a generally established pattern of reciprocal support between older and younger family members that continues throughout an individual's lifetime.

At various points, parents who are well and have resources provide all or substantial support, especially financial assistance, to their children and grandchildren. Older parents who are faced with chronic health conditions, and thereby lose valued exchange resources, are the most likely to become dependent on younger family members help. 

2. So, the developmental shift goes from dependency of children to interdependency (depending on each other) for both parents and children, to greater dependency of parents. 

This pattern of reciprocity begins to shift with a deterioration in either the financial or the health status of the elderly person. 

2. A less common, or non-normative, example of caregiving is caring for adult children who are ill or handicapped either from birth or from an accident. The special-needs child and the physically disabled child remain dependent throughout their lives. Unexpected illness or accident can make an adult child dependent again. 

Consider these lifetime caregiving examples:

A young man in his 20's employed as an engineer at Lawrence Livermore Labs runs his sports car under a truck. His passenger dies, but he survives as a quadriplegic with the IQ of a 7 year-old. His family makes the commitment to care for him at home. After about a year, his father can no longer cope, moves out and seeks a divorce. The younger sister grows up and leaves home -- the mother remains as his sole caregiver. That was 12 years ago. He is in his late 30's now and his mother is in her 70's. Who will last longer? And then what?

A 75-year-old man was being discharged after a stay in the hospital. The hospital staff was concerned and asked about who would care for him during his convalescence. "Don't worry." he said, "Mom will take care of me." The staff laughed, thinking him a witty character. The next day a 92-year-old woman came in and took her son home. 

C. The aspect of caregiving that this chapter is concerned with is caring not for children but for other adults: parents, spouse, and relatives. 

1. We easily associate the term caregiving with young children, but it is a term which now also applies to the other end of the life span, elderly caregiving- taking care of Mom and Dad, or Aunt Suzie, or Uncle Jim or a spouse. The average woman will spend 18 years caring for children and 20 years caring for aged parents. In between, or simultaneously, she may spend years caring for an ill or disabled spouse.
    
2. Elaine Brody of the Philadelphia Geriatric Center argues that parent care has become a normative, but stressful experience, for individuals and families and that its natural scope and consequences are not fully understood. 
   
3. Lou Glasse, former president of the Older Women's League (OWL), says "The empty nest is nothing more than a myth. If women's nests are empty at all, they fill again quickly with elderly parents or other relatives who need care and support." Just when many women on the "Mommy Track" thought they could get back to their careers, some are finding themselves on an even longer "Daughter Track," with their parents or their husband's parents growing frail. 
   
4. Middle-aged couples may be just beginning to savor some freedom from the demands of family, perhaps to have a little extra money or to make plans to travel. And then the empty nest begins to fill again. Studies show that adult children provide 80% of the health and social services needed by their aging parents. 
   
5. Family Survival Caregivers Alliance Project (a San Francisco organization for families dealing with brain impairment members) surveyed 455 family caregivers in 1988 and found a great diversity in terms of their relationship to the patient. An 88-year-old husband caring for his spouse with Alzheimer's disease; a 79-year-old woman caring for her middle-aged son; a working woman caring for her 92-year-old mother; a 27 year-old woman caring for her sister, a stroke victim; a 40- year-old granddaughter caring for her grandmother with Parkinson's disease. These types of caregiving do not fit into any one period of adulthood. 

These caregivers do not share a single developmental stage of life. The need for parent care may arise while adult children rear their own children, as they enter and advance through middle age, or as they adjust to the realities of their own old age. 

Did You Know:  California Paid Family Leave Law:
Since July 1, 2004, workers can receive up to six weeks paid leave per year to care for a child or ill family member. At its inception the program was funded 100% by employees and cost each of us an average of $27 per year in additional SDI contributions. The benefit will replace up to 55% of a caregivers wages. The maximum benefit is $987 per week (in 2008). There is a two-week waiting period before workers can apply for paid family leave. http://paidfamilyleave.org/

 

6. Health problems of later life initiate the need for care and assistance, and the responding person is generally a member of the ailing elderly person's family who provides aid with very little assistance from others. 
   

Here are some statistics for informal, family caregivers:

". . .  nearly 10 million people over the age of 50 today are caring for their aging parents, according to a study conducted by the MetLife Mature Market Institute, in conjunction with the National Alliance for Caregiving and the New York Medical College. The number of caregivers has more than tripled over the past 15 years."http://www.npr.org/2012/05/01/151472617/discovering-the-true-cost-of-at-home-caregiving

 In general, the average  caregiver is 46 year old woman

Caregivers are overwhelmingly women (72%) with 25% being wives, 30% daughters and nearly 40% have a child under the age of 18. Just 15% of caregivers are husbands and just 10% are sons. 

The experience of caregiving is different for women than for men. Elderly women tend to find the isolation and loneliness most stressful, while elderly men complain more about the physical strain and unfamiliar domestic work. 

Family members devote an average of 71 hours per week to caregiving and 22% have left their jobs. Nearly 50% are still working. While the average is just over 4 years more than 30% have been caregivers for more than ten years (National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Bethesda, MD: National Alliance).

Sociologist Samuel H. Preston, of the University of Pennsylvania, reports that for the first time in American history the average married couple, by the time they are 40 years old, has more  living parents than children. 

Did You Know:

Due to longer life expectancy and delayed childbearing of the Boomer generation, an increasing proportion of women will be in the position of providing care to both children under the age of 18 as well as elderly parents. These caregivers are referred to as the Sandwich Generation because they are caught between two generations needing care.  

D. Relationship Influences and Caregiving:- Kin Network

1. Spouse caregivers are older, less likely to be employed, and often view care provision as a normative expectation of marriage. Because of this, they may be more committed than adult child caregivers. 
   
2. Young and Kahana (1989) looked at 183 older patient-caregiver dyads after discharge from hospitals for a confirmed heart attack, and found less caregiving strain among husbands and wives, in comparison to daughters. 
   

1. This validated previous findings that caring for an ill spouse may be a normative expectation for older couples, and, for this reason, they perceive and express less of a subjective burden. Gratifications derived form helping a martial partner could provide another explanation for lower spouse burden. 

3. Nolan and Grant's recent findings suggest that among those caring for adults, adult children caring for parents experience the least satisfaction. Strain is experienced primarily in terms of role conflict, being tied down, and sacrificing their social life. 

Role Change Versus Role Responsibility:

Care taking an older adult often involves changing how we interact with that person.
These changes include: 
            1. role change or social position
            2. role responsibility (tasks within that role)

Role change involves wearing a different hat. For example, Mom may have been the caretaker or grandparent who helped with child care. As a child you may have relied on Mom or Dad to meet your needs. Now, you must help meet theirs. Or a spouse may have lost the hubby/wife team.

Role responsibility involves changes in the duties they perform within their changed role. For example, 

    Wives may find it difficult to start paying bills, make financial decisions, 
    keep up auto or home maintenance.

    For men, the personal care for a woman’s needs may be stressful.        
    Shopping and cooking balanced meals are not familiar tasks, and        
    many spousal caregivers are old themselves

Besides role change and role responsibility, many caregivers are sandwiched in between caring for children and parents.

Most pre-retirement caregivers are married women so that the major difference between caring for a spouse and caring for a child or parent is that in the first case, the caregiver is looking after his/her most significant other, so that caring is part of the marital relationship. In caring for an adult child or parent, the caregiving often interferes with, and puts strain on, the central marital relationship.

Within the female kin network, a hierarchy of preference exists, based on the caregiver's relationship to the older person and on geographic proximity (how close they live to each other). Wives are favored over all others. If the older person is unmarried, widowed, or has an ill spouse, then an adult daughter or daughter-in-law is commonly the primary caregiver.

If a spouse or child is unavailable, then a sister is primarily responsible. If none of these are available, a female member of the extended family, such as a niece or granddaughter, most often assumes responsibility. Even when an older person moves in with the eldest son, as in East Indian and Japanese cultures, the daughter-in-law is generally the caregiver. 

For elderly caregivers, caring is more likely to be the focus of their lives, while in the case of younger caregivers, caring may displace or distort the previously existing balance of relationships.  

To sum up, a spouse caregiver may see the role as part of his/her primary relationship and  focus of life. A child on the other hand, may find that the caregiving role interferes with his/her primary relationship and disrupts his/her lifestyle. 

On the basis of available evidence, therefore, it seems likely that in sound relationships, the long history of intimacy in the married relationship results in positive attitudes about caregiving. 

When the child becomes the caregiver, the role change is often perceived as a role reversal, but the idea of child and parent reversing roles is inaccurate for a number of reasons.

Childlike behavior is normal and expected in children, while "childlike" behavior in an elder is the result of a disease process, not the normal aging process.

A child's future promises a reduction in dependency as he/she gains  independence, while the future of an elder means that dependency will increase. 

A child leans to do things for the first time, but older persons must learn to accept assistance with activities they were once able to do for themselves. 

The psychological and emotional reactions to caring for a child versus an adult are not the same. The experience of changing a diaper for a child could never be considered the same as cleaning and caring for an incontinent parent. 

Anticipating the growth and development of a child is vastly different than facing the inevitable death of a parent.

And when a child does not perform expected behavior, the parent can use a carrot and stick approach. That means that they can be given consequences for their unwanted behavior. When working with an older adult, consequences for unwanted behavior are not only inappropriate, but many times can be considered adult abuse. 

E. What is Caregiving?

1. Aging often involves a series of losses which, for many, lead to a need for some type of assistance. This can range from a weekly call to see how things are going, to help with household chores,  transportation, or 24-hour nursing care. The needs are varied and so are the means of filling them.
   

2. Too often ,the only options considered by families or physicians are independent living on one hand or nursing home care on the other. When, in reality, there are many levels of care between theses two extremes. 
   
   However, as you have seen, the continuum of support can range from minimal assistance with activities of daily living to purchasing support services such as 'Meals on Wheels', or in-home care providers, to living with children, shared housing, day programs, board and care, intermediate care, and skilled nursing. 

Please refer to your handout 'Functional Limitations With Age'

1) Note that ¾ of people over 85 need help with housework

2) Over 1/3 need help walking, getting outside and shopping

3) 1/4 need help managing money, bathing and showering.

Many older people are institutionalized because of lack of assistance with these ADLS. It is estimated that as high as 40% of people in skilled nursing could be maintained at a lower level of care (Moody,2000).

7.  Impact on Caregivers:

 MOST COMMON SELF-REPORTED HEALTH PROBLEMS OF FAMILY CAREGIVERS. 

Nearly a third of all caregivers describe their experience in negative terms. Adverse immunological changes such as T-lymphocytes and helper T cells are decreased.

This means that caregivers have a 50 times greater incidence for infectious diseases than the general population. Suppressor cells that keep tumors and cancer in check are reduced, leaving caregivers susceptible to illness due to stress, and 33% die sooner than the person they are caring for (Del Oro Resource Center).

Stress of caregiving is associated with depression, loss of social participation, and loneliness.

Half lose time from work. More than 25% have work disrupted with productivity losses of $1,142 per year per employee. Businesses are beginning to offer day care not only for children, but for parents so that employee lost of productivity is reduced. 

20% leave their jobs and 11% take leave of absences. 

1. The Myth that Families Don't Care:

A pervasive myth is : people used to care for their elders, but now we callously abandon our parents in old age, just as our children will abandon us. 

The persistence of this myth is remarkable because of overwhelming evidence that the opposite is true. Not only are more people, many of whom are old themselves, caring for their aged parents, but they are providing care for more difficult problems and for longer periods than ever before. Family caregivers provide between 80-90% of medically related care, personal care, household maintenance, and assistance with transportation and shopping for older people. 

The duration and extent of care have changed since the "good old days." Whereas people typically used to care for parents during an acute, ultimately fatal illness, people today live longer after chronic disease and disability set in. "It is long-term parent care that has become the norm. . ".

Experts believe the myth persists because at its heart is a fundamental truth. 

1. At some level, members of all generations expect that the devotion and care given by the young parent to the infant and child should be repaid, in kind, when the parent, now old, becomes dependent. 
   
2. But that level of devotion is not possible for most adult caregivers, and, consequently, they feel guilty.
   
3. The good old days may not be an earlier period in our social history but an earlier period in each family's history to which we are slowly returning. Adult children are moving home because of the poor economy. Many can not pay back student loans or find jobs after college.
   
4. Not only does the myth persist because the guilt persists, but the guilt persists because the myth persists. To quote Erma Bombeck: "Guilt is the gift that keeps on giving".
   
   

What is Our Duty? 

Filial responsibility, also called filial piety, refers to the duty of a son or daughter to his/her parents. Although there are no clear guidelines nor specific models of behavior, most older parents expect that married children will:

                live close by
                take care of them when they are sick
                visit often if they live near by
                call or write if they live at a distance.

A modified extended family is one that keeps close ties even though they do not share households

There is help on line: Link2Care is an internet-based information and support system sponsored by California's Caregiver Resource Centers. The URL is https://www.caregiver.org/link2care-0

Most families, contrary to the popular myth, do not want to place their loved one in a nursing home. They want to maintain a quality of life for their loved one in the community for as long as possible, but they can't do it without a support system.

The cost of one year in a skilled nursing facility is around $80,000 per year.  Most of this is paid for through the governmental insurance program Medicaid ( a needs-based program- MediCal in California). MediCare ( a provision of Social Security) does not pay for the majority of nursing home placements. (NOTE: the differences between Medicaid and MediCare). According to Google:

The main difference is that Medicare is generally for people who are older or disabled, and Medicaid is for people with limited income and resources. The table provides more information about each program and how they compare. A federal health insurance program for people who are: 65 or older.

 

Among those who are able to pay for their skilled nursing care, the average patient depletes all his/her resources within 18 months and then must go to Medicaid for assistance.

Financially speaking, support systems for family care would be sound investments for the taxpayers, to say nothing about the improved quality of life for everyone. Yet, no governmental program pays for 24 hours in-home assistance for elderly custodial care (help with ADL's).

Before a parent moves in an adult child's home, the decision must be weighed. The following questions should be addressed:  

1. If the parent is disabled, is the adult child willing to take the amount of time that is needed to provide for his or her care?
   
2. Have all the obligations of caregiving, such as hands-on care and the parent's transportation to and from doctors' appointments, religious services, and social activities, been fully considered?
   
3. What are the goals for the move? Is the motivation a genuine desire to help or is it motivated by guilt?
   
4. If the adult child  works and has school-aged children, are the adult child and spouse willing to sacrifice their lifestyle or a portion of it, to care for the parent?
   
5. How is the relationship between the adult child and parent? If the parent is living under the child's roof, any historical strains will be magnified, not minimized. 
   
6. How is the relationship with siblings and how will this move affect them?
   
7. On a practical basis, can the adult child's home accommodate the parent comfortably, providing him/her and other family members with adequate privacy?
   

Some benefits of moving parent into your home:

1. The intergenerational experiences are a real plus, and the socialization aspects can be wonderful for your parent. 
   
2. If the parent is still active, he/she can add another pair of hands to the family's daily activities-- cooking, gardening, etc. 
   
3. There is a sense of satisfaction from being responsible and dependable for a loving parent.
   
4. It provides a powerful role model for the next generation of caregivers and continues the interdependency or developmental cycle. 

Points To Remember:

1. It's important to keep the communication channels open. Hold a family conference, and include the parent in the plan to move (even if you  think he/she is  not capable of understanding), then have frequent family meetings once the move occurs. 
2. Encourage the nuclear family to be frank about their feelings and fears. 
   
3. Consider the effect the lifestyle change will have on the children of the family. Their independence and privacy are likely to be just as compromised as the parents'. Families have to acknowledge their responsibility to their children as well as to the parent. 
   
4. Adult siblings should be part of the care plan. Talk with them often and try to divide as much caregiving responsibility as possible. It may be helpful to have an independent third party serve as facilitator for discussions with adult siblings. 
   
5. Don't isolate the family by hiding the burden from friends and neighbors. Give them a chance to understand and help.

2. Centenarians (people over 100 years old). 
   Your text  lists four categories of old age as follows

This concept is new. Historically we only used just three categories that ended at age 85. As you learned in previous lectures, today those over age 85 are the fastest growing segment of the population, and, thus, the growth of the numbers of people over age 95.

3. Respite Care Defined-
   
   Here is a working definition of Respite Care. "Inpatient or outpatient care delivered to an elderly person in lieu of his/her regular caregiver".
   
   There is widespread attention to respite care as the number one strategy to provide caregiver support –- give the caregiver a break or emotional support.

Respite care is provided by social workers, visiting nurses, homemakers, physical or occupational therapist, transportation programs, daycare personnel, or family members .

Sometimes, institutionalization is a form of respite (check your handout, "Your Guide to Choose a Nursing Home). Types of respite care include home respite care, day care centers, a few hours at a SNF facility or overnight care. This allows a caregiver to take a week-end break or travel. 

1.  Utilization Rates

A study by the Veterans Administration shows that respite care is the number one requested  service by caregivers yet when the service is provided free or at a reduced cost, 30-50% of families fail to use it. The study found that:

Many caregivers can't ask for help. In fact, they may even feel guilty for requesting outside help. There is a perception that "everyone" else is doing it, why can't I. 

The reasons may also be related to perceptions, attitudes, and beliefs about the supportive service. Many caregivers feel that no one can care for their loved-ones like they can. "No one can do it like I do"  often is related to a need to be needed by the caregiver. 

The service, therefore, may be perceived as not very useful, the quality of care offered is not adequate, or the requirement to take the patient to the respite center may be seen as too burdensome. Getting a demented person up and dressed is not an easy task.  

Caregivers also complain about the multiple qualifying restrictions (services can be restricted to either low income, veterans, or people with mental impairments, etc.), transportation difficulties, impairment standards (patients frequently must meet ambulatory, wandering or continence standards). These restrictions  may lead to caregiver self-elimination.

Unfortunately, there is little research to guide program development for respite care. There has been little or no regularly public-funded programs providing consistent support. Federal and State support is sporadic and inadequate to meet growing demands.

Most want and prefer in-home help, but the high cost of hiring private or agency help is a strong deterrent. Subsidized programs that offer in-home help often have long waiting lists, and families complain that they can not nearly meet the requested need. 

4. Other Things to Consider-
    

1. Hearing can be a big issue in caretaking. Make sure your patient can hear you when talking. If they ask for assistance, they must know you answered them. Often people who are hard of hearing feel ignored and so stop asking for help. Here are some tips for communicating with the hard of hearing. 

Don’t yell, it distorts your voice and makes it harder to understand.

Make eye contact. Be sure to get their attention.

Turn down (or off) the TV, and use simple and direct sentences.

Body language, such as touching, pointing, and nodding, helps the person know you understand them.

2.  Medication Questions 

Studies show that half of all prescription drugs dispensed are taken incorrectly, leading to continued and worsening illness, unnecessary side effects, drug interaction problems, and increased health care expense. Safe and effective drug use is a particularly important health issues for older people for several reasons:

Older people take more medicines than younger people do. They make up about 13 percent of the population yet they consume 30% of the prescriptions written.

Many older people have more than one chronic disease and take several prescriptions, plus various over-the-counter drugs at the same time. This raises the risk for drug interaction and the chances of making errors. Many drugs also work differently in older people because of age-related body changes. For example, older adults often require much smaller doses of sleeping pills because their kidneys may not be filtering as well as a younger person, making overdose more likely. 

For some, memory loss or poor vision may make it difficult to take medicines as directed. In addition, poor communication with health professionals is often a problem for many patients. The result may be that patients do not understand how to take their medicines or the role drugs play in their treatment plan.

 The high cost of multiple medications can also be a problem. As you have read in the news lately many elderly go north or south of the United States' borders to purchase their prescriptions because of the high cost of the same drugs in the States.  

Why are the cost of prescriptions higher in the U.S. than in other countries? Any ideas? If you would like to research this idea it can be worth up to 3 extra credit points depending on the depth of your analysis. Post it in the discussion area with "Extra Credit" in the subject line. Include your sources as usual.

When a new medication is prescribed, it is important to get full information from the doctor regarding the dosage, what the drug is expected to do, and any side effects to watch for. Write it all down. Ask the pharmacist to clarify anything not understood. Also, the use of medication dispensers (available in most pharmacies) help to identify missed or duplicated doses. They are  small, usually plastic , devices that can hold either a day, week, or month's worth of medications. 

5. Institutionalized Workers (also known as formal caregivers) 

Up until now we have been discussing informal caregivers. They are usually unpaid, unskilled family or friends. Formal caregivers are paid and educated personnel who caretake the elderly. 

Caretaking most often involves geriatrics and not gerontology. Geriatric work with the elderly has historically been Ghettoized- low status and low pay (that's not necessarily true for gerontologists). That is changing as more older adults demand knowledgeable caretakers who can attend to their special needs. Boomers are demanding caretakers for their parents with aging knowledge. 

Nurses aides provide six times as much hands-on care as R.N’s and are involved in the most intimate ways with residents. They are able to get an enormous amount of work done. Lacking even a basic education regarding aging issues, these aides are seldom able to draw from a body of established sociological knowledge.

Performing bathing, dressing, feeding, toileting, linen changes and getting them up to the dinning room before breakfast, even with a rotating bath schedule (clients are bathed every three days), aides are hard pressed to complete all their morning tasks before the breakfast trays arrive.

They can find working in the institutionalization of a nursing home impersonal. Historically, with poor wages and heavy turn over, nurses aides fragile optimism is often eroded. Their attitudes harden and cynicism and indifference can result.

Aides work hour after hour doing repetitive body and bed tasks while knowing that administration gives them little room for autonomy and decision making. Most say that their breaks are carefully watched and they feel little appreciation for their work.  

Some learn to keep their distance because they feel that administrators care little about their personal lives. Some suffer in the underclass of economic and social deprivation.

One basic theme emerges, to get the required amount of care done in the most expedient manner with compliant patients .

To accomplish their goal requires an “obedient,” cooperative client with few unusual requests. This creates a dilemma for frail residents. They value positive staff attitudes, polite, courteous, and respectful care givers. In studies they report that their most valued treasure is to be treated with dignity.

Residents learn quickly the routine that is expected of them, often sacrificing their wants and needs. 

Poem:

When you get old, you can't talk to people because people snap at you. When you get so old, people talk to you that way. That’s why you become deaf, so you won’t be able to hear people talking to you that way. And that’s why you go hide under the covers in the big soft bed. . .

 Albee

See you at the discussion board

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