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General definitions
Much as a family might wish
to provide all the care for an ailing loved one, achieving
that objective is not always possible. Caregiving is hard
work. The patient may need 24-hour-a-day attention, and providing
one hundred percent of the physical and emotional care for
an undetermined period of time may prove to be too much for
the family to handle. Fortunately, it’s not an all-or-nothing
proposition.
Certainly, no one can replace
the love provided by family members. But if you can get help
with some of the physical aspects of caring—things
others can easily do—then you will have more time and
energy to provide valuable emotional support to the patient.
Three levels of care can be provided by others:
Supportive care,
which includes assistance such as transportation to and from appointments, meal
preparation, shopping, housekeeping, and laundry services.
Personal care,
which includes help with dressing, grooming, bathing, feeding, incontinence care,
and transferring the patient from bed to chair. It can also include taking and
recording vital signs (e.g., blood pressure or pulse) and giving medications.
Skilled care,
which includes procedures or evaluations that require the skills of a licensed
nurse. It involves tasks such as hooking up an IV, giving a shot, or monitoring
rapid changes in condition.
These types of care can be
provided in many different ways. Some services are offered
at home. Some require a move to a specific setting such as
an assisted living facility or a nursing home. No matter
where your loved one lives, if he or she has been diagnosed
with an incurable illness, hospice can offer tremendous support.
Because hospice is available in a variety of settings, we
recommend you learn about hospice services first in case
you need them. Then you can consider which location and type
of care is appropriate for your situation.
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Hospice
Hospice service emphasizes
comfort and quality of life. It is specifically designed
to relieve any physical, emotional, or spiritual pain experienced
by those with an incurable illness. This holistic approach
extends to both the patient and the family. Some communities
have an inpatient hospice facility—a special building
where people near the end of life can live and receive 24-hour
care by trained staff. Most communities have more-modest
hospice services. Rather than move to a hospice facility,
for instance, patients receive several home visits each week.
As a general rule, patients may receive hospice care whether
they are living at home, in an assisted living facility,
or in retirement apartments. In many states they can also
receive hospice if they live in a foster care home, a residential
care facility, or a skilled nursing facility. Hospice does
not provide day-in, day-out care, so most people who use
this service also have ongoing caregivers available.
Staffing: Hospice uses a team
approach to provide physical, emotional, and spiritual support
to the patient and his/her family members. The hospice team
includes nurses, social workers, and bath aides, as well
as volunteers for short respite visits and interfaith chaplains
who assist with spiritual concerns. Hospice personnel are
trained to maintain comfort on all levels (“comfort
care”), with a special emphasis on pain control and
management of distressing symptoms.
Hospice services typically
include a visit from a nurse two to three times a week as
well as help from social workers who can connect the family
to social service programs. Most medical equipment and medications
associated with maintaining comfort, including pain medicines,
are provided as part of hospice care. Weekly visits from
a volunteer are also available and give family caregivers
a few hours of respite. Nurse’s aides may come during
the week to help bathe and shave the patient. In addition,
the counsel of a chaplain is available anytime upon request.
The financial side: If the
patient is relying upon Medicare to pay for hospice services,
two requirements must be met: A physician must indicate that
he/she does not believe the patient is likely to live longer
than six months; and the patient, family, and physician must
agree they do not wish to pursue further curative treatments
(for example, chemotherapy or radiation) and instead want
to focus on providing comfort care and enhancing quality
of life for the time the patient has left. Depending on the
policy, those with private insurance may be able to continue
curative treatment while also receiving hospice services.
If the patient has decided
to opt for comfort care and let nature take its course, hospice
can be extremely helpful for both the person who is ill and
for the family caregivers. Physicians often wait for the
family to request this service. Unfortunately, many families
do not seek hospice care until very late in the disease.
Once they begin to receive hospice support, they often realize
they had needed the help weeks and even months earlier. Hospice
programs recommend at least two months of care so the patient
and family can receive the optimum benefit of the services
provided. If you are beginning to think that hospice might
be a useful option for your family, we suggest you start
the conversation with your doctor, or call your local hospice
to find out more information. Sooner is better than later.
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Settings for care
Care in the home
Most patients prefer to stay
at home as long as they can. The familiar environment provides
comfort in and of itself. Home health care is a service that
can be ordered by your physician if the patient requires
the skilled care of a nurse several times a week. With this
service, a nurse’s aide may also be available to come
every other day to help with personal care such as bathing
and grooming.
Home health care does not
provide supportive services such as shopping, laundry, or
housecleaning. If the patient needs this kind of general
help around the house, you may want to contact a company
that offers in-home care providers. Although this term sounds
very similar to the term home health care, this
type of care encompasses a broader range of services. You
do not need a doctor’s orders to work with an in-home
care provider. However, because supportive care (housekeeping,
laundry, and cooking) is not considered to be medical assistance,
it is not generally covered by insurance. People who require
both supportive services and personal or skilled care often
turn to in-home care providers because home health care agencies
usually offer only personal and skilled care.
Staffing: Depending on the
hiring practices of the company, personal care may be provided
by a certified nursing assistant or by noncertified staff.
Skilled care, as described earlier, must be performed by
a licensed practical or registered nurse (LPN or RN). Supportive
care is usually provided by unlicensed personnel. People
who choose to stay at home can also receive help from hospice
provided they meet the eligibility requirements noted earlier.
The financial side: Services
provided in the home may be expensive depending on insurance
coverage, the patient’s financial situation, and the
amount and type of services used. Medicare and most private
insurance will cover skilled care and some personal care,
at least for a limited time. To be eligible, the patient
must be considered "homebound" (i.e., leaving home
for activities such as medical appointments or church requires
considerable effort). Unless the patient is on Medicaid,
the cost of supportive services (e.g., meal preparation,
light housekeeping, help getting to the bathroom) is not
reimbursed by Medicare or insurance and must be paid for
by the family.
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Skilled nursing facilities
Skilled nursing facilities
are designed to provide care for patients with numerous or
complex personal care needs that require 24-hour-a-day assistance.
Depending on the family’s finances and caregiving abilities,
the best care may involve a move to a skilled nursing facility.
If the person you care for is terminally ill and nearing
the end of his or her life, you may want to look for a facility
that recognizes the special needs that families have at this
time. Many skilled nursing facilities have designated private
rooms with extra space and beds so family members can visit
and stay overnight.
Staffing: At the skilled nursing
facility, licensed staff provide supportive, personal, and
skilled care services 24 hours a day. In some facilities,
the hospice team can also offer spiritual, physical, and
social support services for nursing home residents.
The financial side: Medicare
has very specific regulations about when it will and won’t
cover care in a skilled nursing facility. It also includes
regulations about when a patient can stay at a skilled nursing
facility and also receive hospice care. It is best to talk
with the staff of the facility or a hospice social worker
to determine if your situation qualifies you for Medicare
coverage. Persons with low income may be able to receive
assistance from Medicaid if a doctor certifies that they
need around-the-clock skilled care. (Return to list)
Assisted living facilities
If the patient has access
to some help, for instance a spouse who is able to provide
personal care, assisted living may be a good choice. Assisted
living facilities provide assistance with a few tasks such
as meal preparation, light housekeeping, and reminders to
take medication. These facilities usually comprise unfurnished
one-bedroom and studio apartments. They are very social settings
and often include organized activities and a central dining
room for meals. This arrangement can be very helpful not
only for the patient, but also for a caregiving spouse because
it offsets the isolation common to people caring for the
seriously ill. If the person who is ill needs more help than
that provided at assisted living facilities and no spouse
or family member is available to give this care, you can
usually arrange for home health care or in-home care providers
to assist with these needs.
Staffing: Depending on the
hiring practices of the facility, nonnursing services may
be provided by certified nursing assistants or noncertified
personnel. Skilled care must be performed by an LPN or an
RN. At most assisted living facilities, a licensed nurse
consultant is available but is not necessarily on site every
day.
The financial side: Because
the care provided in an assisted living facility is considered
to be supportive service, Medicare, Medicaid, or insurance
companies do not reimburse the cost of the monthly fee. Reimbursable
skilled services (i.e., home health care) can be provided
in an assisted living facility, as can hospice. (Return to list)
Residential care facilities
"First cousin" to
the assisted living facility, a residential care facility
offers more support and is appropriate for people who have
multiple care needs. On the continuum of care, this option
falls between a skilled nursing facility and assisted living.
If the person you care for needs more help than housekeeping
and meals but does not need around-the-clock nursing attention,
a residential care facility may be the best option. Many
of these facilities specialize in care for persons with Alzheimer’s
or other forms of dementia. Because the amount of services
provided varies between facilities, it is best to check with
each one regarding staffing and financial arrangements. (Return
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Adult foster homes
Adult foster homes typically
are family-run businesses where the owner of the house takes
in older adult boarders who can no longer live on their own.
An adult foster home is generally an appropriate choice if
the patient needs only minimal help and some supportive or
personal care services. (Some foster homes, however, are
certified to provide more-intensive care.) As compared with
other facilities, adult foster homes are small, with four
to eight residents living in a single family home. Some homes
provide private bedrooms; others offer the cost savings of
sharing with a roommate. Usually the foster home provides
the furniture, but residents bring their own personal items
to decorate the room. In keeping with the homelike setting,
meals are typically served family style, with residents gathering
to eat together in the dining room.
Staffing: Depending on the
hiring practices of the foster home, supportive and personal
care services may be provided by a noncertified or certified
nursing assistant. Foster homes usually do not have a licensed
nurse on the premises. Regulation of adult foster homes varies
quite a bit from state to state.
The financial side: As with
an assisted living facility, most of the care provided at
a foster home is supportive in nature and therefore is not
reimbursed by Medicare or other medical insurance. If the
owner of the foster home is amenable, reimbursable skilled
care can be provided in the foster home setting by outside
services such as hospice or home health care. (Return
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A safety note
Many family members worry
about the safety of their loved one when they need to have
others provide care. To ease your mind, when you call various
facilities about their services, you may want to ask if a
criminal background check and drug testing are a routine
part of the company’s hiring procedure. (Return to list)
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