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Caregivers, Caregiving and Home Care Workers

As a caregiver, you are one of 12 million Americans who spend all or part of their day assisting 5 million family members or friends who need help to remain at home.

Many caregivers have multiple responsibilities. The great majority of caregivers are women (75 percent)--a quarter of whom care for both older parents and children. Half of all caregivers also work outside the home. It is no wonder then that caregivers-whether they are full or part-time-need respite and support. Otherwise the demands and constraints of caregiving can become overwhelming.

Many working caregivers find that the demands of their job and caregiving responsibilities conflict. When this happens it is important to discuss your needs with your supervisor. Flex time, job sharing or rearranging your schedule may help to minimize your stress. Increasingly, companies are also offering resource materials, counseling, and training programs to help caregivers.

You can also encourage your older children to become involved in the care of your family member. Such responsibility, provided it is not overburdensome, can help young people to become more empathetic, responsible and self-confident and give you needed support.

Do not hesitate to ask other family members to share in the responsibility of caregiving as well. Your siblings, if they live nearby, have just as much reason as you to assist their aging parent. If you are a caregiving spouse with siblings and/or adult children make your needs known to them. A family conference can often help in sorting out the tasks and schedules that other family members are able to assume. And don't forget neighbors and friends who may be willing to provide transportation, respite care, and help with shopping, household chores and repair tasks.

The help provided by you, other family members, friends and neighbors may still not be enough to enable an older person to remain independent. In this case you will need to look for other avenues of support. One of the first places you should contact is to your Area Agency on Aging (AAA). If your family member has a limited income, he or she may be eligible for services provided through the AAA including homemaker home health aide services, transportation, home-delivered meals, chore and home repair as well as legal assistance.

Area Agencies on Aging can direct you to other sources of help for older persons with limited incomes such as subsidized housing, food stamps, Supplemental Security Income, Medicaid or the Qualified Medicare Beneficiary program which covers the cost of the Part A and B insurance premiums for low-income elderly.

While your Area Agency on Aging may not be able to provide supportive in-home services for older people who have higher incomes, your AAA can provide a registry of home care workers that you can hire directly. Your Area Agency also has information on home care agencies and volunteer groups that provide transportation, chore, respite, yard work and home repair services. In addition to these information and referral services, many AAA's will also provide an assessment of the older person's needs.

AAA's can also direct you to senior center programs which are suitable for older persons who have minor problems with mobility and activities of daily living and to adult day care programs which serve older persons with serious limitations with mobility, dementia, or medical conditions which require daily attention.

In addition to your Area Agency on Aging, good sources for referrals to individual home care workers and home care agencies include the Hospital or Nursing Home Discharge Planner or Social Worker, if your older relative has been hospitalized.

If you decide to hire a home care worker, you will need to determine how much help your older relative needs. Will several hours a day be enough, does he or she need help all day until the family returns home, or does your relative live alone and need round the clock care? You also need to decide what type of home care worker your relative needs. Following are descriptions of the types of home care personnel available:

  • A Housekeeper or Chore Worker is supervised by the person hiring them and performs basic household tasks and light cleaning.
  • A Homemaker or Personal Care Worker is supervised by an agency or you and provides personal care, meal planning and household management and medication reminders.
  • A Companion or Live-In is supervised by an agency or you and provides personal care, light housework, exercise, companionship, and medication reminders.
  • A Home Health Aide, Certified Nurse Assistant, or Nurses Aide is supervised by an agency's registered nurse and provides personal care, help with transfers, walking, and exercise; household services that are essential to health care; assistance with medications, and reports changes in the patient's condition to the RN or Therapist; and completes appropriate records 9

Nonprofit and for profit home care agencies recruit, train, and pay the worker. You pay the agency. Social Service agencies, in addition to home care services, may provide an assessment of the client's needs by a nurse or social worker, and help with the adjustment or coordination of the care plan.

Home Health Care Agencies focus on the medical aspects of care and provide trained health care personnel, such as nurses and physical therapists. Their services may be paid for by Medicare, if they are ordered by a physician.

When calling an agency be sure to ask:

  1. What type of employee screening is done?
  2. Is the employee paid by the agency or the employer?
  3. Who supervises the worker?
  4. What types of general and specialized training have the workers received?*
  5. Whom do you call if the worker does not come?
  6. What are the fees and what do they cover?*
  7. Is there a sliding fee scale?
  8. What are the minimum and maximum hours of service?*
  9. Are there service limitations in terms of tasks performed or times of the day when services are furnished?*

Questions starred with an asterisk should also be asked if you are hiring the person directly.

Unless your older relative needs care for a limited number of hours each day, the rates charged by private home care agencies for homemaker home health aide services and van services for transportation are often beyond the means of middle income families. There are ways to obtain competent help at lower rates, however.

If an older person is discharged from a hospital and receives skilled health care services at home, such as nursing or physical therapy, they are usually eligible for homemaker-home health aide services from home care agencies paid for under Medicare. When Medicare coverage ends, it is often possible to hire these same aides privately for a half to two-thirds of the cost charged by the home care agency.

Other avenues for finding aides who charge lower fees include churches, senior employment services, and agencies that assist displaced homemakers and others entering the employment market.

If you advertize in the papers for help, screen the applicants carefully. Ask for identification and check their references. Regardless of who cares for your elderly relative, protect their private papers and valuables, make arrangements to pick up the mail yourself, and check the phone bill for unauthorized calls. Stealing and fraud are on the rise among caregivers for the elderly so it is best to "play it safe."

When hiring the worker yourself, be sure that the home care worker has the necessary qualifications and/or training. Ask to see training certificates, particularly if the older person has special medical needs such as insulin injections. If the older person needs to be transferred from a wheelchair make certain that the aide knows how to do this safely. If the prospective aide does not know how to bathe a person in bed or transfer, but seems to be otherwise qualified, they can be trained in these and other necessary procedures.

If your older relative needs a considerable amount of help or round the clock care, consider hiring live-in help. In exchange for room and board, these home care aides will usually work for a salary that is far lower than that charged by aides who come in for a few hours, or during the day.

Check with your insurance company about coverage for a full-time home care worker, and contact the appropriate agencies concerning social security taxes, unemployment insurance, and workmens compensation. If you do not want to deal with these somewhat complicated withholdings from the employee's salary, accountants and companies that specialize in doing payrolls will issue the employee's check with the necessary withholdings.

If public transportation is not available and the older person is not eligible for free or low cost transportation, try to hire someone who drives, since this can save you substantial amounts of money in taxi or commercial van ride fares. If the home care worker is going to drive the family car, be sure to check with your insurance company concerning any limitations on your policy.

Your interview with the prospective home care worker should include a full discussion of the client's needs and limitations; as well as the home care worker's experience in caregiving and her expectations. Also ask for the names, addresses, and phone numbers of people who have previously employed the home care worker and be certain to contact them.

Once you have hired a home care worker, make sure that the lines of communication are fully open and that both you and the worker have a clear understanding of your responsibilities to the older person and to each other. Explain what you want done and how you would like it done, keeping in mind that the home care worker is there to care for the older person and not the rest of the family. If the home care worker lives in, try to ensure that he or she has living quarters that give you, the older person and the worker the maximum amount of privacy possible. Be clear about the worker's salary, when he or she will be paid, and about reimbursement for money the worker may spend out of pocket for gas, groceries etc. If the home care worker has a car, discuss use of the worker's car on the job, insurance coverage for the worker's car or other travel arrangements.

Be certain to discuss the subject of vacations, holidays, absences and lateness as well as the amount of time each of you should give if the employment is terminated. If you work and are heavily dependent on the home care worker, emphasize the importance of being informed as soon as possible so that you can make alternative arrangements, if the home care worker is going to be late or absent. You should have a list of home care agencies, neighbors, or family members who can step in should the home care worker be late or absent from work.

Finally, inform the worker about the older person's dietary restrictions, provide a list of contacts in case of an emergency, review security precautions and keys, and discuss the medication requirements of the older person.

Once the home care worker is on the job, periodic and/or ad hoc meetings can be held to discuss any problems the home care worker or the older person may have with the arrangement and to find ways to resolve them. Be positive and open in your approach to resolving difficulties. In most cases, they can be corrected.

However, if, after repeated attempts, you find that major problems are not resolved satisfactorily it may be best to terminate the relationship, and seek another home care worker. During this time, it may be necessary for your older relative to temporarily reside in a long-term care facility or for you to hire a worker through an agency, so it is best to have reserve funds on hand should such an emergency arise.

Another possible avenue of temporary help is respite care. As applied to home care, respite refers to care that provides a needed break for the primary caregiver, ranging from a few hours to days or weeks. Respite care services can be arranged through your Area Agency on Aging. The service offers assistance with meal preparation, dressing, grooming, feeding and light housekeeping, and may include some personal care. A four-hour session is usually the minimum, with an 80 hour annual maximum.

While home care may not necessarily be less expensive than nursing home care or assisted living, it offers older people and their families the opportunity to remain at home and together. What is more, it affords a degree of flexibility and choice for the at-risk elderly that few other living arrangements can offer.

Information provided by NIH.