What is an advance directive?
An advance directive tells your doctor what kind of care
you would like to have if you become unable to make medical
decisions (if you are in a coma, for example). If you are
admitted to the hospital, the hospital staff will probably
talk to you about advance directives.
A good advance directive describes the kind of treatment
you would want depending on how sick you are. For example,
the directives would describe what kind of care you want if
you have an illness that you are unlikely to recover from,
or if you are permanently unconscious. Advance directives
usually tell your doctor that you don't want certain kinds
of treatment. However, they can also say that you want a
certain treatment no matter how ill you are.
Advance directives can take many forms. Laws about
advance directives are different in each state. You should
be aware of the laws in your state.
What is a living will?
A living will is one type of advance directive. It only
comes into effect when you are terminally ill. Being
terminally ill generally means that you have less than six
months to live. In a living will, you can describe the kind
of treatment you want in certain situations. A living will
doesn't let you select someone to make decisions for you.
What is a durable power of attorney for health care?
A durable power of attorney (DPA) for health care is
another kind of advance directive. A DPA states whom you
have chosen to make health care decisions for you. It
becomes active any time you are unconscious or unable to
make medical decisions. A DPA is generally more useful than
a living will. But a DPA may not be a good choice if you
don't have another person you trust to make these decisions
for you.
Living wills and DPAs are legal in most states. Even if
they aren't officially recognized by the law in your state,
they can still guide your loved ones and doctor if you are
unable to make decisions about your medical care. Ask your
doctor, lawyer or state representative about the law in your
state.
What is a do not resuscitate order?
A do not resuscitate (DNR) order is another kind of
advance directive. A DNR is a request not to have
cardiopulmonary resuscitation (CPR) if your heart stops or
if you stop breathing. (Unless given other instructions,
hospital staff will try to help all patients whose heart has
stopped or who have stopped breathing.) You can use an
advance directive form or tell your doctor that you don't
want to be resuscitated. In this case, a DNR order is put in
your medical chart by your doctor. DNR orders are accepted
by doctors and hospitals in all states.
Most patients who die in a hospital have had a DNR order
written for them. Patients who are not likely to benefit
from CPR include people who have cancer that has spread,
people whose kidneys don't work well, people who need a lot
of help with daily activities, or people who have severe
infections such as pneumonia that require hospitalization.
If you already have one or more of these conditions, you
should discuss your wishes about CPR with your doctor,
either in the doctor's office or when you go to the
hospital. It's best to do this early, before you are very
sick and are considered unable to make your own decisions.
Should I have an advance directive?
Most advance directives are written by older or seriously
ill people. For example, someone with terminal cancer might
write that she does not want to be put on a respirator if
she stops breathing. This action can reduce her suffering,
increase her peace of mind and increase her control over her
death. However, even if you are in good health, you might
want to consider writing an advance directive. An accident
or serious illness can happen suddenly, and if you already
have a signed advance directive, your wishes are more likely
to be followed.
How can I write an advance directive?
You can write an advance directive in several ways:
- Use a form provided by your doctor.
- Write your wishes down by yourself.
- Call your health department or state department
on aging to get a form.
- Call a lawyer.
- Use a computer software package for legal documents.
Advance directives and living wills do not have to be
complicated legal documents. They can be short, simple
statements about what you want done or not done if you can't
speak for yourself. Remember, anything you write by yourself
or with a computer software package should follow your state
laws. You may also want to have what you have written
reviewed by your doctor or a lawyer to make sure your
directives are understood exactly as you intended. When you
are satisfied with your directives, the orders should be
notarized if possible, and copies should be given to your
family and your doctor.
Can I change my advance directive?
You may change or cancel your advance directive at any
time, as long as you are considered of sound mind to do so.
Being of sound mind means that you are still able to think
rationally and communicate your wishes in a clear manner.
Again, your changes must be made, signed and notarized
according to the laws in your state. Make sure that your
doctor and any family members who knew about your
directives are also aware that you have changed them.
If you do not have time to put your changes in writing,
you can make them known while you are in the hospital. Tell
your doctor and any family or friends present exactly what
you want to happen. Usually, wishes that are made in person
will be followed in place of the ones made earlier in
writing. Be sure your instructions are clearly understood by
everyone you have told.
What is hypodermoclysis?
Hypodermoclysis (say: hi-po-dermo-cli-sis) is a
way to replace fluids that have been lost through
vomiting, sweating or diarrhea. It may be done when
a person is too sick to drink enough water or eat
enough food.
Why do our bodies need fluid?
Our bodies are made mostly of water. Almost 60
percent of our body weight comes from water. In
order to be healthy, the body needs water just as it
needs food. We lose water everyday in two ways: by
going to the bathroom (about 45 ounces a day) and by
sweating and breathing (at least 21 ounces a day).
We have to eat food and drink fluids every day to
get the amount of water we need.
How are fluids replaced?
There are two ways to replace fluids in someone
who needs them. The first way is to put the fluid
right into a vein. This is called intravenous (IV)
fluid replacement. The other way is to put the fluid
under the skin. This is called hypodermoclysis, or
subcutaneous fluid replacement.
With IV fluid replacement, doctors and nurses
need to watch the person very closely in a hospital.
But a family member or other caregiver can do
hypodermoclysis at home after a doctor or nurse
shows him or her how to do it.
How safe is hypodermoclysis?
This way of replacing fluid has been used safely for
many years. It is used most often on older people
and in people who have cancer.
How does hypodermoclysis work?
A bag of fluid is connected to a plastic tube and
to a long needle. The needle is put under the skin
and taped in place, usually on the chest, abdomen
(belly) or thighs.
A "drip chamber," or small window, in the tube
shows how fast the fluid is dripping. The speed of
the drip can be controlled by using a roller clamp.
A nurse or doctor should replace the needle every 4
to 7 days so the flesh around the needle doesn't
become infected.
Your doctor will decide how fast the fluid should
drip. Your doctor will show you how to control the
drip and tell you when to check it at home. You can
ask your doctor for help if you have questions
or problems.
What are the common problems with
hypodermoclysis and what should I do?
Most of the time, hypodermoclysis is safe.
Sometimes though, there can be a problem. Here are a
few things that might happen during hypodermoclysis:
-
The speed of the drip changes or the drip
stops. Your doctor will show you how to
control the flow rate by rolling the roller
clamp.
-
The needle place will swell. If you gently
rub the skin there, the fluid will soak in
better. Your doctor will show you how. Call
your doctor for help if the swelling
continues.
-
The needle place becomes painful. Check the
skin for redness. If the skin is red, ask
your doctor for help. It may be time to find
a different place to put the needle.
-
Blood collects in the tube. This means the
needle has gone into a vein. Call your
doctor if this happens.
-
The person has trouble breathing or is
feeling much worse. If this is the case,
call your doctor.
What is hospice care, and what are its
purposes?
"Hospice" is the term for a special
program of care for terminally ill (dying)
patients and their families. Rather than
trying to cure an illness, hospice efforts
aim to make the patient comfortable, ease
pain and other troublesome symptoms, and
support the family through a sad time.
A hospice care program tries to provide
the best quality of life for dying patients
by providing a holistic approach. That means
giving spiritual, mental, emotional and
physical comfort to the patients, their
families and their other caregivers.
What is a hospice team?
A hospice team is a group of people who
understand the special goals of hospice
care. The team includes doctors, nurses,
social workers, chaplains, aides and
volunteers. The hospice team helps patients
live out their final days with dignity and
with as much physical comfort as possible.
Is hospice care available to nursing
home residents?
Yes. The services of hospice care
programs are provided wherever patients are
spending their final days. This includes
their own home, a family member's home, or a
nursing home.
The members of the hospice team try to
help nursing home patients be as free of
pain as possible. They also try to help them
be at peace with themselves and their
illness. At the same time, the hospice team
provides support, education and counseling
to family members, nursing home staff and
other nursing home residents who know the
patient.
What specific services does a hospice
program provide?
For the dying patient who lives in a
nursing home, hospice care programs can
provide the following services:
- Around-the-clock nursing services
above and beyond the usual nursing home
care.
- Training of family members in
patient care, as appropriate.
- Spiritual and emotional support for
both the patient and the family.
- Help with practical matters
associated with terminal illness.
- Speech, occupational and physical
therapies (when these services are
considered useful by the hospice team).
- Coordination of services and care
with the patient's family doctor.
- Expert management of physical
symptoms.
- Bereavement and support groups for
families.
What is bereavement support?
Bereavement support is help in coping
with the loss of a loved one. Grieving is a
normal psychological process that nursing
home staff members, family members and
friends go through when a person they love
or take care of dies.
Normal grief has no timetable or
calendar. People experience grief in many
different ways. Many people feel anger,
loneliness, guilt, confusion and fear after
a loved one dies. It helps to be able to
talk about these feelings and about the
person who has died.
Hospice is committed to helping people
who are grieving. Hospice staff members and
volunteers offer warm professional support
to help family members with emotional
healing and readjustment. Hospice respects
the natural dying process. It provides
patients and family members with an
opportunity for spiritual growth during this
final phase of life.
What is hospice care, and what are
its purposes?
"Hospice" is the term for a special
program of care for terminally ill
(dying) patients and their families.
Rather than trying to cure an illness,
hospice efforts aim to make the patient
comfortable, ease pain and other
troublesome symptoms, and support the
family through a sad time.
A hospice care program tries to
provide the best quality of life for
dying patients by providing a holistic
approach. That means giving spiritual,
mental, emotional and physical comfort
to the patients, their families and
their other caregivers.
What is a hospice team?
A hospice team is a group of
people who understand the special goals
of hospice care. The team includes
doctors, nurses, social workers,
chaplains, aides and volunteers. The
hospice team helps patients live out
their final days with dignity and with
as much physical comfort as possible.
Is hospice care available to nursing
home residents?
Yes. The services of hospice care
programs are provided wherever patients
are spending their final days. This
includes their own home, a family
member's home, or a nursing home.
The members of the hospice team try
to help nursing home patients be as free
of pain as possible. They also try to
help them be at peace with themselves
and their illness. At the same time, the
hospice team provides support, education
and counseling to family members,
nursing home staff and other nursing
home residents who know the patient.
What specific services does a
hospice program provide?
For the dying patient who lives in a
nursing home, hospice care programs can
provide the following services:
- Around-the-clock nursing
services above and beyond the usual
nursing home care.
- Training of family members in
patient care, as appropriate.
- Spiritual and emotional support
for both the patient and the family.
- Help with practical matters
associated with terminal illness.
- Speech, occupational and
physical therapies (when these
services are considered useful by
the hospice team).
- Coordination of services and
care with the patient's family
doctor.
- Expert management of physical
symptoms.
- Bereavement and support groups
for families.
What is bereavement support?
Bereavement support is help in coping
with the loss of a loved one. Grieving
is a normal psychological process that
nursing home staff members, family
members and friends go through when a
person they love or take care of dies.
Normal grief has no timetable or
calendar. People experience grief in
many different ways. Many people feel
anger, loneliness, guilt, confusion and
fear after a loved one dies. It helps to
be able to talk about these feelings and
about the person who has died.
Hospice is committed to helping
people who are grieving. Hospice staff
members and volunteers offer warm
professional support to help family
members with emotional healing and
readjustment. Hospice respects the
natural dying process. It provides
patients and family members with an
opportunity for spiritual growth during
this final phase of life.
What are pressure sores?
Pressure sores are areas of
injured skin and tissue. They
are usually caused by sitting or
lying in one position for too
long. This puts pressure on
certain areas of the body. The
pressure can reduce the blood
supply to the skin and the
tissues under the skin. When a
change in position doesn't occur
often enough and the blood
supply gets too low, a sore may
form. Pressure sores are also
called bed sores, pressure
ulcers and decubitus ulcers.
Are pressure sores serious?
Pressure sores can be
serious, depending on how much
the skin and tissues have been
damaged. You should call your
doctor if you think a sore is
forming.
Mild damage causes the skin
to be discolored, but a sore
doesn't form. In light-skinned
people, the damaged skin may
turn dark purple or red. In
dark-skinned people, the area
may become darker than normal.
The area of damaged skin may
also feel warmer than the
surrounding skin.
Deep sores can go down into
the muscle, or even to the bone.
If pressure sores are not
treated properly, they can
become infected. An infection in
a pressure sore can be serious.
Pressure sores also hurt a lot
and make it hard for a person to
move around.
Who gets pressure sores?
Anyone who sits or lies in
one position for a long time
might get pressure sores. You
are more likely to get pressure
sores if you use a wheelchair or
spend most of your time in bed.
However, even people who are
able to walk can get pressure
sores when they must stay in bed
because of an illness or injury.
Some chronic diseases, such as
diabetes and hardening of the
arteries, make it hard for
pressure sores to heal because
of a poor blood supply to the
area.
Where on the body can you
get pressure sores?
Pressure sores usually
develop over bony parts of the
body that don't have much fat to
pad them. Pressure sores are
most common on the heels and on
the hips. Other areas at risk
for pressure sores include the
base of the spine, the shoulder
blades, the backs and sides of
the knees, and the back of the
head.
How are pressure sores
treated?
Three things help pressure
sores heal:
- Relieving the pressure
that caused the sore
- Treating the sore itself
- Improving nutrition and
other conditions to help the
sore heal
What can be done to reduce
pressure on the sore?
Don't lie on pressure sores.
Use foam pads or pillows to take
pressure off the sore. Special
mattresses, mattress covers,
foam wedges or seat cushions can
help support you in bed or in a
chair to reduce or relieve
pressure. Try to avoid resting
directly on your hip bone when
you're lying on your side. Use
pillows under one side so that
your weight rests on the fleshy
part of your buttock instead of
on your hip bone. Also, use
pillows to keep your knees and
ankles apart. When lying on your
back, place a pillow under your
lower calves to lift your ankles
slightly off the bed. Change
your position at least every 2
hours.
When sitting in a chair or
wheelchair, sit upright and
straight. An upright, straight
position will allow you to move
more easily and help prevent new
sores. If you cannot move by
yourself, have your caregiver
shift your position at least
every hour, or more often if
possible.
How should the pressure sore
be kept clean?
In order to heal, pressure
sores must be kept clean and
free of dead tissue. You can
clean the sore by rinsing the
area with a salt-water solution.
The salt water removes extra
fluid and loose material. Your
doctor or nurse can show you how
to clean your pressure sore.
Pressure sores should be kept
covered with a bandage or
dressing. Sometimes gauze is
used. The gauze is kept moist
and must be changed at least
once a day. Newer kinds of
dressings include a see-through
film and a hydrocolloid
dressing. A hydrocolloid
dressing is a bandage made of a
gel that molds to the pressure
sore. These dressings can stay
on for several days at a time.
Dead tissue (which may look
like a scab) in the sore can
interfere with healing and lead
to infection. There are many
ways to remove dead tissue from
the pressure sore. Rinsing the
sore every time you change the
bandage is helpful. Special
dressings that help your body
dissolve the dead tissue can
also be used. They are left in
place for several days.
Another way to remove dead
tissue is to put wet gauze
bandages on the sore and allow
them to dry. The dead tissue
sticks to the gauze and is
removed when the gauze is pulled
off. Sometimes dead tissue must
be removed surgically.
Removing dead tissue and
cleaning the sore can hurt. Your
doctor can suggest a pain
reliever for you to take 30 to
60 minutes before your dressing
is changed.
Why is good nutrition
important for healing sores?
Good nutrition is important
because it helps your body heal
the sore. If you don't get
enough calories, protein and
other nutrients, your body won't
be able to heal, no matter how
carefully you care for the
pressure sore. Your doctor or
nurse or a dietitian can give
you advice about a healthy diet.
Be sure to tell your doctor if
you have lost or gained weight
recently.
What if the sore gets
infected?
Pressure sores that become
infected heal more slowly and
can spread a dangerous infection
to the rest of your body. If you
notice any of the signs of
infection listed below, call
your doctor right away.
Signs of an infected pressure
sore include the following:
- Thick yellow or green
pus
- A bad smell from the
sore
- Redness or warmth around
the sore
- Swelling around the sore
- Tenderness around the
sore
Signs that the infection may
have spread include the
following:
- Fever or chills
- Mental confusion or
difficulty concentrating
- Rapid heartbeat
- Weakness
How are infected pressure
sores treated?
The treatment of an infected
pressure sore depends on how bad
the infection is. If only the
sore itself is infected, an
antibiotic ointment can be put
on the sore. When bone or deeper
tissue is infected, intravenous
antibiotics (given through a
needle put in a vein) are often
required.
How can I tell if the sore
is getting better?
As a pressure sore heals, it
slowly gets smaller. Less fluid
drains from it. New, healthy
tissue starts growing at the
bottom of the sore. This new
tissue is light red or pink and
looks lumpy and shiny. It may
take 2 to 4 weeks of treatment
before you see these signs of
healing.
How can pressure sores be
prevented?
The most important step to
prevent pressure sores is to
avoid prolonged pressure on one
part of your body, especially
the pressure points mentioned
previously.
It's also important to keep
your skin healthy. Keep your
skin clean and dry. Use a mild
soap (like Dove, Basis or Oil of
Olay) and warm (not hot) water.
Apply moisturizers so your skin
doesn't get too dry. If you must
spend a lot of time in bed or in
a wheelchair, check your whole
body every day for spots, color
changes or other signs of sores.
Pay special attention to the
pressure points where sores are
most likely to occur.
Who is a caregiver?
You're a caregiver if
you give basic care to a
person who has a chronic
medical condition. A
chronic condition is an
illness that lasts for a
long period of time or
doesn't go away.
Examples of chronic
conditions are cancer,
stroke, multiple
sclerosis, dementia and
Alzheimer's disease.
If you're a
caregiver, you might be
doing the
following things for
another person:
- Lifting
- Turning him or
her in bed
- Bathing
- Dressing
- Feeding
- Cooking
- Shopping
- Paying bills
- Running errands
- Giving medicine
- Keeping him or
her company
- Providing
emotional support
Why is caring for
someone with dementia so
hard?
The person you're caring
for may not know you
anymore. He or she may
be too ill to talk or
follow simple plans.
This may make it hard
for you to think of that
person in the same way
that you did before he
or she became ill.
The person you're caring
for may also have
behavior problems, like
yelling, hitting or
wandering away from
home. This behavior may
make you feel angry and
frustrated.
How can I tell if
caregiving is putting
too much stress on me?
Common signs of
caregiver stress include
the following:
-
Feeling sad or
moody
-
Crying more
often than you
used to
-
Having low
energy level
-
Feeling like you
don't have any
time to yourself
-
Having trouble
sleeping, or not
wanting to get
out of bed in
the morning
-
Having trouble
eating, or
eating too much
-
Seeing friends
or relatives
less often than
you used to
-
Losing interest
in your hobbies
or the things
you used to do
with friends or
family
-
Feeling angry at
the person you
are caring for
or at other
people or
situations
In addition, you may
not get any thanks from
the person you are
caring for. This may add
to your feelings of
stress and frustration.
What should I do if
I'm feeling overwhelmed
and stressed?
These feelings are
not wrong or strange.
Caregiving can be very
stressful. Because being
a caregiver is so hard,
some doctors think of
caregivers as "hidden
patients." If you don't
take care of yourself
and stay well, you won't
be able to help anyone
else.
Talk with your family
doctor about your
feelings. Stay in touch
with your friends and
family members. Ask them
for help in giving care.
Asking for help doesn't
make you a failure.
Look for help in your
community. You may start
by asking your church or
synagogue if they have
services or volunteers
who can help you. You
can also ask for help
from support organizations
(see "Other
Organizations").
Grieving:
Facing Illness,
Death and Other
Losses
What is
grief?
Grief is a
normal, healthy
response to
loss. One of the
greatest losses
that can occur
is the death of
someone you
love. Other
losses include
the loss of your
health or the
health of
someone you care
about, or the
end of an
important
relationship,
such as through
divorce. Healing
from a loss
involves coming
to terms with
the loss and the
meaning of the
loss in your
life.
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Symptoms
of grief
-
Anger
-
Blaming
yourself
-
Crying
spells
-
Diarrhea
-
Dizziness
-
Fast
heartbeat
-
Feeling
like
there's
a
lump
in
your
throat
-
Feeling
like
what's
happening
around
you
isn't
real
-
Headaches
-
Hyperventilating
--
sighing
and
yawning
-
Nausea
-
Not
being
able
to
get
organized
-
Not
feeling
hungry
or
losing
weight
-
Restlessness
and
irritability
-
Sadness
or
depression
-
Seeing
images
of
the
dead
person
-
Shortness
of
breath
-
Tightness
in
your
chest
-
Tiredness
-
Trouble
concentrating
-
Trouble
sleeping
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What are the
normal feelings
of grief?
As you face a
loss, you may
have different
feelings at
different times.
These feelings
include shock,
denial, anger,
guilt, sadness
and acceptance.
You may find
yourself going
back and forth
from one feeling
to another. For
example, right
when it seems
that you're
starting to
accept your
loss, you may
find yourself
feeling sad or
guilty again.
Your grief may
never completely
go away. But the
pain you feel
will lessen with
time as you work
through these
feelings.
What usually
happens first?
In the first
hours or days
after the loss,
you may feel
shocked, numb
and confused.
You may not
remember what
people are
saying to you.
You may feel
dazed and as
though you're
going through
things like a
robot. You may
think and act as
though the loss
hasn't occurred.
This is called
denial.
As your shock
wears off,
reality will
slowly break
through. You'll
begin to realize
that the loss
has happened.
It's normal to
feel abandoned
and angry. You
may direct your
anger toward
God, religion,
doctors and
nurses, the one
who has died or
other loved
ones, or even
yourself.
What happens
after the anger
wears off?
After you get
through some of
the anger and
denial, it's
normal to try to
pretend things
are like they
used to be. If
someone you love
has died, you
may play
memories over
and over in your
mind. You may
also feel the
presence of your
loved one, think
you see him or
her, or think
you hear his or
her voice.
You may also
find yourself
talking to your
loved one as
though he or she
were in the room
with you. As you
begin to realize
that your loved
one is gone and
you can't bring
him or her back,
you'll begin to
feel the full
impact of your
loss. These
feelings may be
scary because
they're so
strange and so
strong. They may
make you feel
like you're
losing control.
What happens
then?
When you begin
to realize the
full impact of
the loss on your
life, you may
feel depressed
and hopeless.
You may also
feel guilty. You
may find
yourself
thinking things
like "if only"
or "why me." You
may cry for no
apparent reason.
This is the most
painful stage of
healing, but it
won't last
forever. In
normal grief,
the depression
will begin to
lift with time.
What is the
first sign of
relief?
You may start
to feel better
in small ways.
For example, you
may find it's a
little easier to
get up in the
morning, or you
may have a small
burst of energy.
This is the time
when you'll
begin to
reorganize your
life around your
loss or without
your loved one.
What is the
final stage?
The last
stage of
accepting a loss
is when you
begin to
reinvest in
other
relationships
and activities.
During this
time, it's
normal to feel
guilty or
disloyal to your
loved one
because you're
moving on to new
relationships.
It's also normal
to relive some
of your feelings
of grief on
birthdays,
anniversaries,
holidays and
during other
special times.
How long
does grief last?
You'll
probably start
to feel better
in 6 to 8 weeks.
The whole
process usually
lasts 6 months
to 4 years.
If you feel
like you're
having trouble
getting through
the process at
any point, ask
for help. People
who can help
include friends,
family, clergy,
a counselor or
therapist,
support groups
and your family
doctor.
Be sure to
talk to your
family doctor if
you have a lot
of trouble
eating, sleeping
or concentrating
for more than
the first couple
of weeks. These
things can be
signs of
depression. Your
family doctor
can help you
work through
your depression
and start to
feel better
about your loss. |
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