Services Available to Families of Alzheimer’s Patients
PRACTICAL SOLUTIONS
by Katie Lovette
There are many
services available for Alzheimer's patients through the hospital, private
agencies, and government agencies. Sometimes it is hard to locate these services
without someone pointing you in the right direction. We suggest you make a list
of the patient's needs and the kinds of services that you feel will help. Talk
with other caregivers in your area and listen to their suggestions. Their
experience will give you insight into what is available. Check with each company
to clarify what they provide and the cost. Keep records on each company.
All of the
decisions should be yours. Do not allow anyone to pressure you. However, also do
not expect to find the perfect service. Your insurance will probably cover only
one agency, such as a home health agency or outpatient services, unless the
doctor provides necessary orders. Perhaps you can engage two or three different
agencies so that the patient may receive everything he or she needs. Remember
that the service the patient receives can improve the rest of his or her life.
HOME
HEALTH CARE
If the patient is
in the hospital and is entitled to receive home health care visits after he or
she returns home, a social worker will visit with the patient and family in the
hospital before they are discharged and sent home. This person will help get the
patient signed with a local home health agency or another agency that the
hospital provides. Another social worker will be assigned through the home
health agency to handle your file. This worker can help with many problems or
questions that arise.
A home health
agency provides many services and often is able to suggest the right direction
for areas not covered by them. The following is a brief explanation of some of
those services.
Nurses
Through home
health, nurses are available on 24-hour call. They will come as often as
everyday, to once every ninety days, depending on the care the patient requires.
They can give shots, measure the patient's vital signs, take cultures, examine
catheters, feeding tubes, etc., and monitor the overall well-being of the
patient. If the need arises, they can contact the doctor and discuss the problem
with him.
Many times the
nurses will do a supervisory visit. If you are unhappy with any of the services
received, talk to the person sent on the visits. Do not feel obligated to stay
with a certain agency. If the agency cannot or will not correct a deficiency,
talk to another agency. Talk to friends and others who use home health, to see
what agencies they recommend. There are many agencies and there will be one you
like. Do not hesitate to look for the service you need.
Aides
Home health aides
are available from a few days to seven days a week, depending on what your
doctor feels is needed. Aides bathe and groom patients, keep their hair clean,
toenails and fingernails trimmed, and measure vital signs. The aides are trained
to notice changes and may be able to see a problem early, especially if the same
aides have attended the patient for an extended period of time.
Physical Therapists
Home health
agencies also provide visiting physical therapists if the doctor recommends and
writes such orders for the patient. Depending on the need, the patient may
receive therapy three to seven days a week, lasting from a few minutes to an
hour each visit. The therapist will come to the home and will guide the patient,
at the patient's own speed, through the exercises that have been recommended.
Some days will be better than others. Be prepared for sore and aching muscles of
your disgruntled loved one. The therapy is designed to help rebuild muscles, and
increase strength and range of motion after an injury or surgery, such as a
broken bone or hip replacement. Not everyone receives physical therapy on a
continuous basis; only patients who show progress or response.
This does not mean
that caregivers cannot offer a little therapy and exercise on their own to help
keep the patient agile and toned. One way is to learn the exercises that the
physical therapist performs, and then help the patient perform those exercises
on days when the physical therapist does not come to the home. You can also help
the patient work his arms and legs to keep them limber. Gently pull the
patient's arms up over his head, or as far as the arms will go, and repeat it a
few times until one of you becomes tired. This helps to stretch the muscles,
keeping them flexible. For the legs, gently bend them, and then straighten them.
Sitters
Some home health
agencies provide sitters for their patients. If the agency does not offer the
service itself, it may have a list of people in the area who offer these
services.
OTHER
SERVICES
In most cities,
there are many services available but the hard part is finding out about them.
Your local department of the National Council on Aging can inform you about the
services provided in your area.
Meals
One national food
service available in many areas is called Meals-on-Wheels. This organization
provides a hot, nutritious meal Monday through Friday and on holidays to those
who cannot prepare a meal for themselves. Some local chapters deliver meals
seven days a week. The meals are delivered by volunteers, who are not frightened
away by bad weather.
No matter the
person's age or income level, if they are homebound they are eligible to receive
this service. These meals cost between $4 and $8 each, depending on where the
person lives. If the person cannot afford to pay for the meal, he or she can
obtain information about financial assistance through the Meals-on-Wheels
program.
Churches and other
local, private organizations may also provide meals. Be sure to check with the
local senior citizen organization and your church to see what services they can
provide. Usually, these are available for a minimal cost.
In some
communities, grocery stores offer grocery delivery, which is especially nice if
getting out of the house is a chore. Call your local stores and speak with the
manager.
Transportation
An example of a
nationally known transportation service is "Dial-A-Ride." Some
communities also have their own transportation service for senior and
handicapped residents. Some services will transport people to the doctor,
pharmacy, grocery or to run errands. These services are for people who have no
other means of transportation. Some drivers and their assistants will help load
the passenger onto the van and will help them inside their destination or home.
Be sure to ask the office personnel exactly what services are provided.
NATIONAL
ORGANIZATIONS
National Council on Aging
The National
Council on Aging is an agency with offices all over the country and a national
office located in Washington D.C. Check the local telephone directory to see if
there is a local office in your area. This office can provide accurate
information about many services available to senior citizens in your area, and
the costs.
National Council
on Aging
409 Third St.,
S.W.
Washington, DC
20024
(202) 479-1200
(800) 424-9046
On the Web at
http://www.ncoa.org/
American Association Of Retired
Persons (AARP)
The AARP is the
leading organization for helping people who are over 50 years old. It provides
information and education to support their needs and interests on a wide range
of topics. Such topics include traveling, home ownership, the Social Security
program and benefits, health, and working after retirement. For $8 a year,
members are provided with hundreds of dollars in benefits and discounts, as well
as a subscription to the AARP newsletter.
American
Association of Retired Persons
601 E St., N.W.
Washington, DC
20049
(800) 424-3410
On the Web at
http://www.aarp.org/
Alzheimer's Association
The Alzheimer's
Association is a national organization made up of caregivers and family of
Alzheimer's patients. The organization provides information relating to
research, caregiving, local chapters, and other valuable support to caregivers.
Since 1982, the AA has been raising money to help with research for the
prevention and cure of the disease. Such fundraisers include the Memory Walk,
which is held by every local chapter to help local families and fund research.
There are many
local chapters across the country. Each is dedicated to helping the caregivers
cope with the pressures of caring for a loved one stricken with this disease.
November has been declared the Alzheimer's Awareness Month.
Alzheimer's
Association
919 North Michigan
Avenue, Suite 1000
Chicago, Illinois
60611-1676
(800) 272-3900
On the Web at
http://www.alz.org
"Safe Return"
The Alzheimer's
Association has started a national program called Safe Return. This program
helps to locate, identify and return patients who wander off and become lost.
Patients are registered with a national database and receive an I.D. bracelet.
If a patient becomes lost, a call to an 800 number begins the process of
locating them. Contact your local chapter of the Alzheimer's Association for
more details.
The Internet
If you have access
to a computer, either at home or at the public library, check the Internet for
availability of services. There are web sites that can offer ideas and advice on
caregiving also.
SUPPORT
GROUPS
The Alzheimer
caregiver is often called the second victim of Alzheimer's. The results of
caring for a loved one can lead to not only emotional problems such as
depression and guilt, but also to physical symptoms such as headaches, sleep
disturbances and digestive problems. Many times caregivers ignore their own
health because of the care of the patient. This is where support groups can
help. These groups are made up of other caregivers who are going through similar
problems. Support groups provide the caregiver an avenue through which to
discuss individual problems and what is happening at home. Members gain insight
on how others are coping, and they receive encouragement and support.
The Family
Caregiver Alliance is a national organization dedicated to improving the quality
of life for this nation's 25 million caregivers. Even though each caregiver is
in a different situation (not all caring for Alzheimer's patients), all
caregivers share a common bond. The FCA spent many hours working for recognition
of caregivers. The group's work has been successful because in 1994, President
Bill Clinton signed a proclamation establishing National Family Caregivers Week,
which is recognized each year in November.
Family Caregiver
Alliance
425 Bush Street
Suite 500
San Francisco,
California 94108
(415) 435-3388
(415) 435-3508
(fax)
On the Web at
http://www.caregiver.org
Caregiver Support
Groups offer useful information to caregivers, and assist caregivers in coming
together and sharing their feelings in a supportive environment. These support
groups help caregivers feel less alone and help to create strong bonds of mutual
help and friendship.
Participating in a
support group can help caregivers manage stress and improve their skills through
the exchange of experiences and details. Sharing problems and coping mechanisms
lets caregivers assist others while helping themselves. It also allows them to
realize that some of the problems have not solutions, and to accept the
situation.
Caregiver Support
Groups (check yellow pages for local group)
9621 East Bexhill
Drive
Kensington,
Maryland 20895-3104
(301) 942-6430
RESPITE
CARE
Taking care of an
Alzheimer's patient is unbelievably difficult at times and relieving the
caregiver from his or her duties whether it's for an hour to a week is vitally
important. This kind of temporary relief is known as respite care. A family
member, friend, nurse, companion, or a sitter can provide that much-needed
break.
The caregiver
needs time away from the patient. The job of caregiving can be overwhelming.
Constant breaks, as many as possible, from the emotional and physical stress
will enable the caregiver to not only provide adequate care for the patient for
a longer period of time, but to stay healthy as well.
During this free
time, the caregiver can run errands that would be hard to do when their loved
one is with them. They can take a nap, engage in a hobby, go to the movies, or
visit a friend. Many go shopping, take lessons, swim laps, or take a walk and
get some exercise. Whatever relaxes the caregiver can and should be done during
this time. This is time for the caregiver to enjoy and think of only themself.
Following are some
ideas for respite care. These will help the caregiver decide which one is best
for their situation.
Day Care
Outside the home,
adult day care programs are designed for patients in the early stages of
Alzheimer's and related illnesses. These centers offer activities that stimulate
the mind. This type of environment encourages the patient to engage in simple
activities that can include exercise, crafts, singing, and interaction with
others. The cost of such programs is usually not covered by insurance.
In-Home Care
For in-home
respite care, there are three options: skilled nurses and aides from home care
agencies; family and friends who offer to help; and paid companions or sitters
whom you hire yourself. These various people can provide all areas of care, and
provide the primary caregiver with a break.
Each one of these
types of caregivers brings their own special skills. I personally prefer family
and friends because they add the love and closeness the patient needs at this
time. Nurses, aides and paid companions usually have experience, but do not
provide the same kind of closeness. We were blessed to have home health nurses
and aides who became friends. We felt comfortable calling some of them at night
if needed. They answered endless questions and worked their schedules to fit
ours when we needed them most.
More than likely,
you will have to train anyone who stays with the patient. There will be
necessary procedures or certain actions that your loved one will respond to, and
these will have to be explained and demonstrated to the sitter. A health care
worker is not always trained to give care for the various needs of the patient.
For example, most workers we encountered were not trained to handle my
grandmother's PEG tube.
Although in some
states there is financial assistance available through Medicaid for many
services, it usually does not cover the cost for sitters. You will probably have
to pay for these services.
HIRING
HELP
Hiring help is
difficult. It's hard to find someone you feel comfortable with, and trust with
the patient and in your home.
Start by making a
list of what type of help is needed and what will be required of the person.
When looking for a helper, this will help you be very clear in the job
description.
During interviews,
be sure to talk about the requirements of the job and what the helper will be
expected to do. Do not leave out any detail.
Ask for references
and call each one. A few phone calls and/or visits can save a lot of heartaches
later.
Before hiring
someone, make a written agreement that covers wages, tasks and what is expected
and required by each party. You and the helper should both sign the agreement.
Then make two copies, one for each of you.
Here are examples
of questions to ask at the interview:
Are you able to lift?
Are you comfortable giving medicine to the patient?
Are you comfortable feeding the patient, especially
if the patient is fed by a tube (nose or stomach)?
What will you refuse to do?
How much do you charge?
How much advance notice do you need to come for a
few hours' stay?
How long can you stay at any given time?
Do you have any medical problems yourself?
ADVICE
FOR HANDLING SITTERS
The sitter's first
stays should be short.
Make a list of all
telephone numbers of friends and family members, and include the number(s) where
you can be reached.
Write instructions
on everything that describes the procedures necessary, such as feeding,
changing, the preparation of meals, and dispensing any medicine. Make copies of
these for future reference and for other sitters.
The helper needs
to be able to do everything on the list.
Realize the
patient has to become accustomed to the new helper, and vice versa.
If you have to
criticize, do so in a brief and concise way. Offer suggestions on improvement in
a calm and polite manner.
Praise a job well
done.
LONG-TERM
CARE OPTIONS’
Adult Homes
These types of
homes are known as group homes or foster homes and offer limited services that
do not include skilled nursing care. The home does not have to be licensed and
you must oversee their work. Find out if they provide a lot of individual care
or if the patient is left on their own. Most adult homes do not provide
individual care. All activities are performed in a group setting. This can be a
viable option for patients in the early stages of Alzheimer's.
Nursing Homes
Do not be
frightened by all the bad publicity these places have received. Many nursing
homes provide wonderful care and boast skilled nursing care. Be sure to find out
the exact services a home offers and determine if a particular home provides the
care that the patient needs.
Before placing a
patient in a home, visit it several times at different times of the day and
week. It's especially important to make one of those visits during meal time,
when the staff is busiest, to see how well the home operates under pressure.
After the patient
is placed in the home, visit him at different times for the same reason. If
there is a problem, arriving unexpectedly will allow you to see exactly what is
happening.
Nursing homes
provide around-the-clock nursing services. The facilities are equipped to
provide more extensive care, such as administering injections, monitoring blood
pressure, and caring for patients on ventilators. However, many residents of
skilled nursing facilities may be receiving only "custodial" care such
as help with bathing, dressing, eating, using the toilet, and getting in and out
of bed. In addition, nursing homes are required to provide recreational
activities for residents. They may also provide rehabilitative services, such as
physical, occupational or speech therapy. Nursing homes can be very expensive,
averaging $40,000 per year depending on where you live.
Currently,
Medicare does not cover the cost of routine care in a nursing home, but Medicaid
does. Medicare will help you pay for up to 100 days of medically necessary care
for older persons and other qualified individuals.
Special care units
for individuals with Alzheimer's disease may be designated in portions of
existing nursing homes. Special services may include secured grounds, trained
staff, and equipped rooms. As of 1998, federal guidelines had not yet been
established so the caregiver should exercise caution in choosing a facility that
provides special benefits for its dementia residents. These special units are
expensive and are not covered by Medicare.
HOSPICE
Hospice is
end-of-life care that can either be offered at home or in a facility or
institution. Not every patient will qualify for hospice, but when they do, the
service is invaluable.
Founded in
1978, the National Hospice Organization is the oldest and larges nonprofit
organization devoted exclusively to hospice care and to making it a permanent
part of the U.S. health care system. NHO is dedicated to promoting and
maintaining quality care for terminally ill people and their families.
Hospice care
is a compassionate, dedicated method of caring for the terminally ill, so that a
person may live the last days of his or her life with dignity and comfort at
home or in a home-like setting. Hospice care does not cure, but helps the
patient and the family by alleviating or controlling the pain and symptoms so
the patient's final days are lived as comfortably as possible.
Medicare
will pay for hospice with orders from the doctor. If after six months the
patient begins to recover, then they are referred back for home health care. If
the patient becomes worse, hospice can be resumed.
From Loving Care for Alzheimer’s Patients, by Katie Lovette. Copyright © 1999 by Health Information Press. Excerpted by arrangement with Health Information Press. $14.95. Available in local bookstores or call 800-MEDSHOP or click here.
