Few people are prepared for the responsibilities and tasks involved in caring for the aged. To help make the task easier, it is important to have a game plan in life which helps determine where we are headed and how we are going to get there. This guide will help to serve as a road map which gives optional paths for caregivers. It is also an emphatic reminder that those who care for other people can do a better job of caregiving if time and attention also are given to their own personal needs. It can not be stated strongly enough; the caregiver is a very important part of the caregiving equation. The success of this equation and the continuance of its success is actually dependent on how well the caregiver cares for him/herself. In other words, if the caregiver becomes ill, who will care for the carereceiver? Before you get to that place, please read this handbook.
This handbook explores a number of different topics which can make the role of caregiver easier, and at the same time, help the person receiving the care. Throughout this handbook, *caregiving* refers to the person giving care, and *carereceiver* the elderly person receiving the care.
Below are two checklists, one focusing on the carereceiver and the other on the caregiver. They are included as general guidelines to help insure an optimal level of health, safety and comfort for both your carereceiver and yourself, the caregiver.
__ All legal and financial matters are in order and available
__ Physical and dental appointments are kept annually or more often if needed
__ The home environment is clean, safe and pleasant
__ Nutritional needs, exercise, sleep and social activities are maximized to the degree possible
__ Personal hygiene and grooming are done daily
__ Respite services have been utilized monthly/weekly
__ Level of care is reviewed monthly to ensure carereceiver is able to remain in the home
__ I am getting out/exercising at least once a week
__ I am getting at least seven to nine restful hours of sleep a night
__ I talk with or visit up to three friends or relatives weekly
__ I keep annual medical and dental appointments
__ I am taking only the medications as prescribed to keep up my health
__ My legal and financial papers, including wills, are in order and available
__ I have checked a new resource regarding caregiving each week
__ I have read and am aware of the Caregiver's Bill of Rights
__ I am eating three balanced meals a day.
The first step in organizing a rational care plan is making a list of needs. As family members or friends care for an impaired elderly person, several questions present themselves:
-- What are his/her needs?
-- What kinds of care are needed to allow the elderly/impaired person to remain in the community?
-- Who is going to provide the care? When? How?
-- Should the carereceiver remain in his/her own home, live with the children or other relatives or move to other surroundings (retirement apartments, residential care, intermediate care, skilled nursing facility or other)?
-- How can living arrangements be changed to help the person stay in the home or become more independent?
-- If outside services are needed, does the impaired person have the resources to pay for them? How can they be obtained?
-- How can care be given to the person in need without denying attention to others (spouse or children) for whom the caregiver also has responsibility?
-- Do you as the caregiver feel tired or frustrated from caring for an older person?
In answering these questions you are developing an important *List of Needs* of the impaired elderly person, and bringing into perspective the caregiver's needs as well. The questions do not have easy answers and the solution may vary in every situation. The care of an impaired older person can create stress that affects the ability of the caregiver to continue giving necessary levels of care. The stress experienced may be physical, financial, environmental and/or emotional in nature.
Physical Stress: Providing physical care to an impaired older person can cause physical stress. General homemaking and housekeeping activities such as cleaning, laundry, shopping, and meal preparation require energy and can be tiring, particularly when added to existing responsibilities in one's own home.
Personal care required for the supervision of medications and the maintenance of hygiene can also be stressful, particularly in situations of acting-out behaviors, incontinence (loss of bladder or bowel control), colostomies, or assistance with bathing. Lifting and transferring individuals with limited mobility is not only tiring, but also can result in injury to the caregiver or the impaired person. In some instances there is the additional responsibility of maintenance of equipment such as wheelchairs or hospital beds.
Financial Stress: The care of an impaired elderly person has many financial dimensions. For those services that cannot be provided by family members (medical, pharmaceutical, therapeutic, etc.), decisions will have to be made as to where service will be secured and how they will be paid. When money is limited, many families assist with the cost of care, causing financial burdens on all family members.
Environmental Stress: The proper home setting has to be chosen. If the carereceiver elects to remain in his/her own home, modifications such as railings and ramps may have to be installed. If the person cannot remain in his/her own home, alternative arrangements must be sought, such as moving in with a friend or relative or specialized housing (retirement hotels, senior apartments, residential care homes, intermediate care facilities, or nursing homes). If the carereceiver is to remain in the home, some major adjustments in the living arrangements and patterns of daily living will be necessary.
Social Stress: Providing personal care up to 24 hours a day can cause social stress by isolating oneself from friends, family and a social life. The caregiver may find him/herself becoming too tired or unable to have *an evening out* even once a week, or once a month. What can result is a build-up of anger and resentment toward the very person receiving the care, as the carereceiver is the cause of the lost socialization.
Emotional Stress: All of these factors often result in tremendous emotional stress. Compounding these sources of stress are the difficulties in managing one's time, juggling multiple responsibilities, and feeling the pressure of the increased dependency.
For family members providing care, the various forms of stress can result indifferent feelings. Anger, resentment and bitterness about the constant responsibilities, deprivation and isolation can result. This is also a time when many of the unresolved conflicts from parent-child relationships resurface and can intensify, causing anxiety and frustration. There might even be the unspoken desire, at times, to be relieved of the burden through institutionalization or even death of the carereceiver. This desire is frequently and swiftly followed by feelings of guilt. All of these can be felt, then denied because they seem unacceptable. The person giving care needs to be assured that, in fact, these feelings are common even though they may not be expressed. There are resources that can help caregivers. The remainder of this book will address those resources, such as joining a caregiver support group, using community resources and above all, caring for yourself the caregiver.
First make a detailed inventory of any assets individual family members and friends can contribute, including the assets of the impaired elderly person needing the care. Assets include available time, skills, space, equipment, the strengths of the person in need care, and most important money. Sit down with all the family members (or at least as many as are agreeable) and workout a plan for giving help. This involves defining and agreeing upon what tasks will be performed, by whom, on which days, and so forth. For example, Aunt Martha can cook, Uncle Peter can mow the lawn and Mary can check on Mom twice a day.
Caregiving Exchanges: Some situations may allow for exchanging support services such as the Caregiver Exchange through Area Agency on Aging. A friend who has similar caregiver responsibilities may care for both impaired individuals one day a week in exchange for your providing the care on another day. Another exchange situation might include making a spare room available to a college student for his/her help with care of the carereceiver, in return for free room and board.
When family or other volunteer help is not available or cannot meet your needs, caregivers or carereceivers may wish to seek help from agencies. A wide range of help may be available. Some may be covered by private insurance, Medicare (and/or a supplemental program of your State). All of it can be purchased. Sometime the service costs may be based on the income of the carereceiver. Each agency has its own fee structure; you may want to ask about their arrangements before ordering the service.
Note: See Appendix A for a list of names and telephone numbers of the agencies mentioned below. (Mike: Appendix A is presented in this SeniorNet version minus the telephone numbers which are only applicable to San Diego County. Users of this Handbook might want to identify counterpart agencies in their county or service region and list them in the Appendix by name and telephone numbers.)
Adult Day Health Care: This is for people who are physically and/or mentally frail. It offers a range of therapeutic, rehabilitative, and support activities, including nursing, rehabilitation, assistance with life activities, social work services, meals, and possible transportation, provided in a protected setting for a portion of the day, one to five days a week, usually during weekdays.
Chore Workers/Handypersons Services: Includes heavy-duty housecleaning, minor home repairs, yard work, installing safety devices, and winterizing homes.
Companionship Services: Companions visit isolated and homebound individuals for conversation, reading, letter writing, and general light errands.
Escort Services for the Elderly: These services provide personalized accompaniment to service providers as well as personal assistance.
Geriatric Assessment Units and Special-Care Units: Specialized geriatric units, both inpatient and outpatient, exist in some hospitals and medical centers; e.g., SOCARE, API They provide coordinated multi-disciplinary diagnostic services to older patients.
Home Delivered Meals: Some nutritional programs as well as well as specialized *meals-on-wheels* programs offer home delivered meals to the frail, homebound aged. Subsidized programs ask for voluntary contributions, while others may require full payment cost for delivery of a hot, well balanced lunch, and sometimes cold evening meal.
Home Health Aides: Provide personal care to individuals at home (These services may be covered by health insurance if ordered by a physician.) Aides assist with eating, dressing, oral hygiene, bathing, colostomies, administering medications, etc., as well as light household tasks.
Home Health Care: Organized programs of nursing, social work, occupational therapy, physical therapy, and other rehabilitation services to individuals in the home.
Homemaker Services: Provided by non-medical personnel, services include shopping, laundry, light cleaning, dressing, preparation of meals, and escort services on medical visits. Homemakers can be of great help in supplementing help provided by family members, or providing relief when family caregivers need a break. Homemakers can be secured through in-home health care agencies, the Area Agency on Aging, the Department of Social Services, and religious groups and organizations. Some agencies provide bonding and training for their homemakers while others provide only a registry of homemakers' names and phone numbers, in which case you must thoroughly check references and draw up a contract for the required services.
Hospital and Surgical Supply Services: Supply houses rent or sell medical supplies and equipment like hospital beds, canes, walkers, bath chairs, oxygen and other equipment. Consult your Yellow Pages.
Housekeeping Services: These usually include cleaning, shopping, laundry, and meal preparation.
Housing Assistance: Housing assistance programs exist to help in the search for senior housing, shared housing, and finding emergency shelters, such as Heartland Human Relations and Area Agency on Aging.
Nutritional Programs: Congregate meal programs feed many older adults as a group in a senior center, community center, or school. A noonday meal is provided, containing one-third of the recommended USDA dietary allowance, usually for a voluntary contribution. Additionally, some centers provide recreational and educational activities.
Occupational Therapy: Occupational therapy, or OT, is restorative, to enhance or restore skills necessary for daily living. It should be provided by a qualified occupational therapist who is referred by your doctor.
Physical Therapy: Physical therapy, or PT, is rehabilitative therapy to maximize mobility. It should be provide by a qualified physical therapist, usually recommended by your doctor or hospital.
Respite Care Services: Respite care programs provide temporary and in some instances up to twenty-four hour care to give relief to primary caregivers. The care may be provided in the person's home, at an adult day care center, or other facility.
Senior Service Teams: Regional/County Mental Health teams working together to provide mental health screening, needs assessments, and short-term counseling services to seniors.
Skilled Nursing Services: These specialized services are provided for specific medical problems by trained professionals through local home care agencies. Your doctor must prescribe nursing services.
Speech Therapy: Speech therapy is provided by a qualified speech therapist to overcome certain speech and communication problems. The doctor usually recommends this.
Social Day Care: Provide supportive but not rehabilitative services in a protected setting for a portion of the day, one to five days a week. Services may include recreational activities, social work services, a hot meal, transportation, and occasionally, health services.
Telephone Reassurance: Friendly telephone calls are provided by agencies or volunteers offering reassurance, contact and socialization. Telephone reassurance can be a lifeline for older people who must be left at home alone during the day.
Transportation: Transportation services provide travel by automobile or specialized vans to and from medical care. Community agencies and service providers such as Dial-a-Ride, Red Cross Wheels, Cancer Society, and LifeLine are but a few.
End of part 2