• Respite Care

Respite care is designed to give that daughter a break. By using respite care, Anne could go shopping for the afternoon, could go out to dinner with her spouse, or could go to a family wedding or funeral out of state. She could even go on vacation (most care givers can only dream about time away for rest and relaxation).

Care givers need help. It is that simple. Care givers have spouses, children and/or grandchildren who require and deserve time and affection, careers, homes and yards to maintain and educational goals and hobbies to pursue. Adding the task of care giving to already busy lives creates a tremendous burden. The care giver, like our fictional Anne, may love the individual for whom she cares very much and may want to help. Anne may also feel that she owes it to her mother to provide the best possible care because her mother raised her and made sacrifices for her. Sometimes the relationships are not as close as that between Anne and her mother, but the care giver still assumes the responsibility of caring for another individual. Quite often, the care giver may be the spouse of the ill individual, and not a child. The care giver may be older and experiencing health problems of his or her own. Becoming a full-time care giver may be more than he or she is physically capable of doing. The physical, mental, emotional, and often financial, tolls on care givers are great and generally not fully realized by other family members. Care givers tend to neglect their own health in caring for a loved one and sometimes end up with more serious medical problems than the individuals for whom they provide care.

It is okay for care givers to ask for help. The surprise is not that the care giver needs help, but that the care giver manages to accomplish all that he or she does.

Help from family and friends: The least expensive form of respite care involves help from family or friends. For example, if our fictional Anne has a sibling or adult child, she could ask him or her to learn how to safely care for Anne's mom. Together, they could schedule times when Anne's sibling or child could come into Anne's home and provide care, thus allowing Anne to be gone, or could take Anne's mother into his or her own home for a period of time to give Anne some rest. Ideally, siblings and children will volunteer to help out. If a family member fears that he or she isn't qualified to provide the needed care, Anne could offer to teach him or her until he or she is comfortable alone as a care giver.

Sometimes care givers hesitate to ask other family members to help out. Too often, family members assume the care giver has everything under control. Honest communication between the care giver and family can help clarify when the care giver wants and needs assistance. Do not be afraid to ask for help. Everyone needs a break from time to time.

When family and friends cannot help, what can you do? Family care givers can hire professional care givers to provide respite care to loved ones.

What does professional respite care look like?

1. In-home care. In-home care at the appropriate level, medical (nurses and health aides) or non-medical (companions and sitters who provide supervision and meals and do light house work) can be hired for part or all of a day, as needed. The individual, or the family care giver, would contact a home care agency at least several days in advance of the needed respite. Agencies typically need to come to the home, meet the individual who requires care, assess his or her needs and learn about his or her routines and medications. The home care agency needs to enter into a care agreement with the individual (if he or she has the capacity to make these arrangements) or with the individual who has the legal responsibility for managing the individual's health care and finances (that may not always be the care giver). The home care agency will then schedule one or more of their qualified care givers, as needed, to provide care in the home at the desired times. In an emergency (death in the family, illness of the care giver), the home care agency may be able to provide same-day care, but it will be a little more complicated. Please see the home care sections of our web site to learn more about home care options. If the care giver must leave town, in-home may be a workable option, but perhaps not the best choice if the home care agency has not had experience caring for this individual in the past.

2. Adult day care programs. Adult day care programs often offer respite care. The programs provide safe facilities where older adults who need assistance can spend all or part of the day, occasionally or on a regular schedule, with trained staff and with their peers. The individuals participating in the program enjoy nutritious meals and fun activities. They socialize and sometimes exercise their bodies and their brains. They are reminded to take their medications on time, or the medications are given to them, as needed. A nurse is generally available on site to monitor routine medical conditions. Adult day program centers are usually secured to prevent anyone wandering away from the site. Costs for adult day programs are quite reasonable. Arrangements should be made several days in advance as the program staff will want to assess the individual's needs and care and payment agreements must be completed. The program must have enough staff on hand to serve its clients each day and may not be able to take an extra individual on a given day without advance notice. In an emergency, a day care program may be able to provide services more quickly. Please see the adult day care program section of our web site to learn more.

3. Assisted living facilities. Some assisted living facilities offer respite care. Some keep an empty apartment or two just for short respite stays; others offer respite only when they have an unoccupied apartment available. (For that reason, all of the respite care providers listed in our web directory may not have available respite space all the time.) In assisted living, individuals (called residents in assisted living) receive three meals a day and snacks. Their medications are administered or supervised by facility staff. If the individual needs help in bathing or dressing, the staff can help. Some assisted living facilities will help residents with toileting, or will help residents who have occasional problems with incontinence; others do not provide these services. Facility staff do the house keeping and usually the laundry. Health conditions can be monitored by the facility nurse, but skilled nursing cares are not offered (wound cares, intravenous line care, tube feedings, etc). Some assisted living facilities offer dementia care; these facilities will have secured areas to prevent residents from wandering and becoming lost. Again, the assisted living staff will need to assess the individual in advance to be sure they can meet his or her needs. They will need medication orders from the individual's doctor prior to the resident being admitted. The individual, if he or she can, or the person who is legally responsible for management of the individual's health care and finances, will have to enter into a care agreement with the facility in advance of the individual's admission. Care facilities usually charge for respite care by the days and prices will differ from facility to facility. Interview facilities before making a care decision. Ask about rates up front. Care facilities usually are paid in advance, so the individual will probably have to pay for the stay when he or she is admitted to the facility.

If you try using a facility for respite care and the individual has a good experience there, subsequent admissions for respite care at that same facility should go smoothly, although they will still require many of the same admission steps. In an emergency, facilities will try to accommodate a family, but they are required by law to follow certain admission procedures for the safety of the resident. Please see the assisted living section of our web site to learn more.

4. Skilled nursing facilities (nursing homes). Some skilled nursing facilities offer respite care. The procedures for admission are very similar to those explained above for assisted living, but the facility can provide a higher level of medical care. If someone is confined to a wheelchair or bed, has intravenous lines running, requires a ventilator, has open wounds, or requires other complex medical care, a skilled nursing facility is probably the appropriate choice for respite care. Again, arrangements should be made in advance. Please see the skilled nursing facility section of our web site to learn more.

5. Hospice. If an individual is terminally ill (often defined as someone who has an illness from which his doctor believes he will most likely die within the next six months), hospice services may be appropriate. Hospice agencies will come into the home, but not generally around the clock. Some hospices have their own hospice facilities that can admit an individual for respite care. Many care facilities have their own hospice services or will permit an individual to bring in hospice providers from the agency of his or her choice (at the individual's expense). Hospice workers monitor care, work with physicians to achieve pain control and support the individual and family throughout the dying process. Services should be set up in advance, but hospice agencies generally respond very quickly and may be able to provide same-day services. Again, when a hospice agency provides in-home services, they generally will not become the primary care givers, so a hospice agency alone will generally not provide respite care for more than a few hours in the individual's home. Please see the hospice section of our web site to learn more.

How do you pay for respite care?

1. Private pay. The individual needing care of the family pay for the services themselves.

2. Long-term care insurance. If the individual has a long-term care insurance policy, the policy may pay for some in-home care, adult day programs, assisted living or skilled nursing care.

3. Medicare and hospice. If an individual is terminally ill and has Medicare, Medicare will pay for hospice services. Remember that hospice will not become the primary care giver in an individual's home, although they will provide a significant amount of assistance. It would not be possible for a care giver to leave town, however, and expect a hospice agency to assume full charge of the ill individual. If the ill individual enters an assisted living, skilled nursing care or hospice facility, Medicare will pay for hospice services, but not for the basic room and board charges of the facility. The patient will still be responsible for those charges. If the ill individual is not eligible for Medicare, his or her health insurance may provide coverage for hospice services.

4. Medicaid. If the individual needing care qualifies for Medicaid benefits, there may be some financial assistance available from Medicaid for adult day programs, assisted living or skilled care facilities. Medicaid requires that individuals meet certain financial criteria in order to qualify for benefits.

5. VA benefits. If the individual qualifies for VA benefits, there may be some financial assistance for adult day programs, assisted living or skilled nursing care.

6. Grants. Some respite care grants may be available in your area. Contact local respite care providers, respite care advocacy groups and the Alzheimer's Association to see if any small grants might be available for your loved one. Grant money comes and goes and may be available only for specific illnesses, types of care or for certain periods of time.

Tip: Care givers often need respite care in emergency situations, such as the illness or death of another family member (other than the individual being cared for) or the illness of the care giver. Because it generally takes time to have an individual admitted to an agency or facility for care, it helps to develop relationships with a local respite care provider now, in case you might need them later. Since emergency situations often require the care giver to be out of the home for a period of time, it would be helpful to visit local assisted living or skilled nursing facilities (whichever level of care is appropriate for your loved one) that offer respite care. Schedule a trial stay of a day or two now. Go through the admissions process so that the facility assesses the needs of your family member and gets orders from his or her doctor. Become familiar with the admission contract and determine how care will be paid for. Try a brief respite stay now so that your loved one and the facility staff get to know each other. You will enjoy a short break, and you will also have a chance to test the quality of care provided to your loved one. If the stay is successful, you will have established a relationship that will speed the admissions process for an emergency admission later, if you should need it. The emergency respite stay later would also be less traumatic for your loved one and for you because you will both be familiar with the facility, the staff and admissions procedures.