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Caregiver Tips & Information
10 Tips for Family
Caregivers
Find a Doctor
Tips for Family
Caregivers from Doctors
Care Management
Techniques You Can Use
Seating and Mobility
Compare Home Health
Agencies in Your Area
Additional Resources
10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your
earned right. Reward yourself with respite
breaks often.
2. Watch out for signs of depression, and
don’t delay in getting professional help
when you need it.
3. When people offer to help, accept the
offer and suggest specific things that they
can do.
4. Educate yourself about your loved one’s
condition and how to communicate effectively
with doctors.
5. There’s a difference between caring and
doing. Be open to technologies and ideas
that promote your loved one’s independence.
6.Trust your instincts. Most of the time
they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting,
pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow
yourself to dream new dreams.
9. Seek support from other caregivers. There
is great strength in knowing you are not
alone.
10. Stand up for your rights as a caregiver
and a citizen.
Tips for Family
Caregivers from Doctors
- Write questions down so you won’t
forget them
- Be clear about what you want to say
to the doctor. Try not to ramble.
- If you have lots of things to talk
about, make a consultation appointment,
so the doctor can allow enough time to
meet with you in an unhurried way.
- Educate yourself about your loved
one’s disease or disability. With all
the information on the Internet it is
easier than ever before.
- Learn the routine at your doctor’s
office and/or the hospital so you can
make the system work for you, not
against you.
- Recognize that not all questions
have answers—especially those beginning
with “why.”
- Separate your anger and sense of
impotence about not being able to help
your loved one as much as you would like
from your feeling about the doctor.
Remember, you are both on the same side.
- Appreciate what the doctor is doing
to help and say thank you from time to
time.
Care Management
Techniques You Can Use
Did you ever wish you could just pick up the
phone and call someone who would take stock
of your situation, help you access the right
services, counsel you and your family to
help resolve some of your differences, then
monitor your progress with an eye toward
channeling your energy and abilities as
effectively as possible? If your answer is
“yes,” you’re not alone. Having the help of
a care coordinator (often called a care
manager) could make all of our lives easier
and less lonesome, and help us be more
capable family caregivers. While most of us
may not have access to a care coordinator,
we can all learn how to think and act like
one, thereby reaping numerous benefits for
our loved ones and ourselves.
What Is Care Coordination?
Although every case is different, the care
coordination approach usually involves:
- Gathering information from
healthcare providers;
- An assessment of your care recipient
and the home environment;
- Research into available public
and/or private services and resources to
meet your loved one’s needs; and
- Ongoing communication between all
parties to keep information up to date
and services appropriate and effective.
Unfortunately, an assessment of your
abilities and needs is not necessarily a
standard part of the process, but it should
be. A complete view of the situation cannot
be gained without one. An objective analysis
of your health, emotional state, other
commitments, etc., are key elements in
determining how much you can and cannot do
yourself, and what type of outside support
is needed to ensure your loved one’s health
and safety.
Become Your Own Care Coordinator
By learning and applying at least some of
the care coordination techniques and ideas
that follow, you’ll be in a much better
position to develop an organized course of
action that will, hopefully, make you feel
more confident and in control — a goal well
worth working toward.
Educate yourself on the
nature of the disease or disability with
which you’re dealing. Reliable information
is available from the health agency that
deals with your loved one’s condition and
the National Institutes of Health. When
using the Internet, stick with well-known
medical sites. Understanding what is
happening to your care recipient will
provide you with the core knowledge you need
to go forward. It will also make you a
better advocate when talking with healthcare
professionals.
Write down your observations of the
present situation including:
- Your loved one’s ability to function
independently, both physically and
mentally.
- The availability of family and/or
friends to form a support network to
share the care.
- The physical environment: Is it
accessible or can it be adapted at
reasonable cost?
- Your other responsibilities — at
work, at home, and in the community.
- Your own health and physical
abilities.
- Your financial resources, available
insurance, and existence of healthcare
or end-of-life documents.
This assessment will help you come to a
realistic view of the situation. It will let
you know the questions to which you need
answers. It can be a handy baseline for
charting your caregiving journey and
reminding you just how much you’ve learned
along the way.
Hold a family conference.
At least everyone in the immediate
family should be told what’s going on. A
meeting can set the stage for divvying up
responsibilities so that there are fewer
misunderstandings down the road when lots of
help may be needed. A member of the clergy,
a professional care coordinator, or even a
trusted friend can serve as an impartial
moderator. A family meeting is a good way to
let everyone know they can play a role, even
if they are a thousand miles away. It can
help you, the primary family caregiver, from
bearing the brunt of all the work all of the
time.
Keep good records of
emergency numbers, doctors, daily
medications, special diets, back-up people,
and other pertinent information relating to
your loved one’s care. Update as necessary.
This record will be invaluable if something
happens to you, or if you need to make a
trip to the ER. If you can maintain a
computer-based record, that will make
updating all that much easier and it might
even allow you to provide the medical team
with direct access to the information.
Join a support group, or
find another caregiver with whom to
converse. In addition to emotional support,
you’ll likely pick up practical tips as
well. Professionals network with each other
all the time to get emotional support and
find answers to problems or situations they
face. Why shouldn’t family caregivers?
Start advance planning for
difficult decisions that may lie
ahead. It’s never too early to discuss
wills, advance directives, and powers of
attorney, but there comes a time when it is
too late. It is also vital that you and your
loved one think through what to do if you
should be incapacitated, or, worse, die
first. It can happen.
Develop a care team to
help out during emergencies, or over time if
your situation is very difficult. In an
ideal world there will be lots of people who
want to help. More likely you’ll be able to
find one or two people to call on in an
emergency or to help with small chores. The
critical thing is to be willing to tell
others what you need and to accept their
help.
Establish a family regimen.
When things are difficult to begin with,
keeping a straightforward daily routine can
be a stabilizer, especially for people who
find change upsetting and confusing.
Approach some of your hardest
caregiving duties like a professional.
It’s extraordinarily difficult to separate
your family role from your caregiving role,
to lock your emotions up in a box while you
focus on practical chores and decisions. But
it is not impossible to gain some distance
some of the time. It requires an almost
single-minded approach to getting the job at
hand done as efficiently and effectively as
possible. It takes practice, but is
definitely worth the effort.
©National Family Caregivers Association |
www.nfcacares.org | Phone: 800/896-3650
Seating & Mobility
As a
caregiver, you need to be very understanding
to the individuals needs. This is a very
hard time as they are being told they need
to start living their life in a different
manor than they had done so previously. It
will be most beneficial to educate them,
either with a professional, or through a
support group. Getting them involved in
different activities with others in the same
condition, the individual will be able to
make the transition much easier. As far as
the actual device, you will want to make
sure that the individual is fully capable of
performing all the operations of the
mobility device and can do so in a
comfortable manor. Areas to pay close
attention to include an adjustable backrest,
a suspension system, a fore-and-aft track
adjustment, an up-and-down seat adjustment,
an armrest and/or footrest, and lumbar
region support.
How do you care for your mobility device?
The most important areas that you need to
pay attention to are referred to as the 3
B’s…Bad batteries,
bent wheel rims and failed
bearings. If you notice something
that doesn’t seem right, but it isn’t all
too annoying, you should still get it looked
at right away. This could prevent a more
severe accident from happening. So as the
saying goes “it’s better to be safe than
sorry”.
When a wheelchair is purchased, you will
want to make sure that all the correct
adjustments and modifications are made. This
needs to be done by a professional and
should take up to a couple of hours if done
correctly. As long as the proper measures
are taken initially, the work of maintaining
the device will be substantially easier.
Additional
Resources
It's always wise to find out what your
county and state have to offer in the way of
services, even if you think you won't
qualify for them. Check the blue pages of
your phone book for the numbers, or go on
line. Counties and states all have web
sites. Type the name of your state or county
and state into any major search engine i.e.
Iowa, or Montgomery County, PA. Navigate
from there to locate the Department of
Health and Human Services and the specific
office most relevant to your needs such
office on disabilities, elder affairs, or
material and child health.
Other good sources of information include
your local hospital or clinic (social work
department), area adult day centers, social
service and faith-based agencies, and/or the
local chapter of the health agency that
focuses on your loved one's condition. It is
by no means certain that any of these will
offer caregiver support services, but they
are good places to check, and they are good
sources for information about services to
directly support your loved one.
National Family Caregivers
Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site:
http://www.thefamilycaregiver.org
e-mail:
info@thefamilycaregiver.org
The National Family Caregivers
Association (NFCA) is a grassroots
organization created to educate, support,
empower and advocate for the millions of
Americans who care for chronically ill,
aged, or disabled loved ones. NFCA is the
only constituency organization that reaches
across the boundaries of different
diagnoses, different relationships and
different life stages to address the common
needs and concerns of all family caregivers.
NFCA serves as a public voice for family
caregivers to the press, to Congress and the
general public. NFCA offers publications,
information, referral services, caregiver
support, and advocacy.
Caregiver-Specific Web Sites
There are a variety of Web sites that offer
information and support for family
caregivers, in addition to those from
specific organizations.
Help for Patients
and Caregivers :
Alzheimers
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Safety: Steps to
Enhancing Your Home
Modifying
the Environment
When caring for an
individual with Alzheimer's
disease at home, safety and
accessibility can be
important concerns. The
person may experience
changes in:
- Judgment (forgets
how to use familiar
household appliances and
equipment properly)
- Orientation to time
and place (gets lost on
her own street or is
unable to recognize or
find areas in the home)
- Behavior (becomes
easily confused,
suspicious or fearful)
- Physical Ability
(Has trouble with
balance, or depends on a
walker or wheelchair for
mobility)
- Senses (experiences
changes in vision,
hearing sensitivity to
temperatures and depth
perception)
With some creativity,
flexibility and
problem-solving, the home
can be adapted to support
these changes. This article
provides simple steps to
make the home safe and
supportive for the
individual with Alzheimer's.
Before modifying
your home, consider the
following:
Assess the environment.
Identify possible hazards by
looking at your home through
the eyes of an individual
with Alzheimer's. What
objects could cause the
person injury? Can the
person easily get outdoors
or access dangerous areas
such as the kitchen, garage
or basement?
Focus on adapting
rather than teaching.
Avoid reteaching
the person with Alzheimer's
about safety issues.
Instead, identify potential
risks and take the
appropriate precautions.
Simplify the
activities. Most
accidents, especially in the
area of personal care, occur
when the person with
Alzheimer's is rushed. Break
activities into simple,
step-by-step tasks allowing
her plenty of time to
complete them. Giving extra
assistance, such as laying
out clothes in the order
that they are put on, will
also help her with simple
tasks that have become hard
to do.
Support the
person's needs. Try
not to create an environment
that is too restrictive. The
home should encourage
independence, social
interaction and activities
that are meaningful.
Be realistic
about what you can do.
You will never be
able to prevent every
problem. Rely on your common
sense while paying close
attention to objects or
activities that could be
dangerous.
CREATING A SAFE ENVIRONMENT
Once you have identified
potential safety problems,
take the following steps to
modify your home.
MAKE POTENTIALLY
DANGEROUS PLACES LESS
ACCESSIBLE
The person with Alzheimer's
may be at risk if she has
access to certain areas of
the home or the outdoors.
The following action steps
will help to make
potentially dangerous areas
more difficult to access:
Lock or disguise
hazardous areas.
Cover doors and locks with a
painted mural or cloth. Use
"Dutch" doors, swinging
doors or folding doors to
hide entrances to the
kitchen, stairwell, workroom
and storage areas.
Install locks out of
sight. Place
deadbolts either high or low
on exterior doors to make it
difficult for the person
with Alzheimer's to wander
out of the house. Keep an
extra set of keys hidden
near the door for easy
accessibility. Remove locks
in bathrooms or bedrooms so
she is not able to lock
herself inside.
Use special safety devices.
Child-proof locks
and door knobs can help
limit access to places where
knives, appliances,
equipment, cleaning fluids
and other poisonous products
are stored. Use automatic
shut-off devices for
appliances such as an iron,
toaster oven and coffee
maker.
Accommodate Visual
Changes. As the
disease progresses, changes
in vision may make it
difficult for the person to
distinguish colors and
understand what is being
seen. Consider the
following:
Diffuse bright light. Reduce
glare by removing or
covering mirrors, and
glass-top or highly polished
furniture. Cover windows
with blinds, shades or sheer
draperies to block bright
sunlight. Avoid using bare
light bulbs or clear
"decorator" bulbs without
shades. Taking these action
steps may help to reduce
agitation in the person with
Alzheimer's.
Create an even level
of lighting. Add
extra lighting in entries,
outside landings, areas
between rooms, stairways and
bathrooms because changes in
levels of light can be
disorienting to the
individual with Alzheimer's.
Use different
colors. Place
contrasting colored rugs in
front of doors or steps to
help the individual
anticipate staircases and
room entrances. However,
avoid using very dark
colored rugs since it may be
perceived as a hole. Apply
colored decals to glass
doors and large windows
because she may think they
are open doors.
Install special
lighting. Use night
lights in hallways, bedrooms
and bathrooms to prevent
accidents and reduce
disorientation, especially
if the person wanders.
Illuminated light switches
and timers for lights in
these areas can also assist
her at night.
BEWARE OF HAZARDOUS OBJECTS
AND SUBSTANCES
Even the most basic
appliance or household
object can become dangerous
to the person with
Alzheimer's. To reduce risk
of injury:
Limit the use of certain
appliances and equipment.
Remove electrical appliances
such as an electric razor or
a hairdryer, from the
bathroom to reduce the risk
of electrical shock.
Put away kitchen appliances
and equipment including
knives, mixers, grills,
guns, lawn mowers or power
tools, since the person may
not remember how to use them
safely. Also, consider
removing the knobs on the
stove or installing a hidden
gas valve or circuit breaker
so she can not turn on the
stove.
Supervise smoking and
alcohol consumption. Keep an
eye on the person who uses
cigarettes, cigars or pipes
because she may not realize
the dangers related to
smoking. Monitor consumption
of alcohol because it can
have many negative effects,
especially when mixed with
medication.
Be prepared for the
unexpected. Persons with
Alzheimer's have been known
to eat items such as small
rocks, dirt, plants, flowers
and bulbs. Take precaution
by removing toxic plants and
any decorative fruits (wax,
plastic, etc.) that the
person may think are real.
Also, remove vitamins,
prescription drugs, sugar
substitutes and seasonings
from the kitchen table and
counters.
Keep the refrigerator safe.
The person with Alzheimer's
may not be able to
distinguish the difference
between fresh and rotten
food. Clean out the
refrigerator regularly and
discard inedible food. Keep
foods that are safe to eat
in the front of the
refrigerator and at eye
level where she can easily
see them.
Keep walking areas clear.
Remove objects, such as
magazine racks, coffee
tables and floor lamps, to
create safe wandering areas
and reduce the possibility
of injury.
AVOID INJURY DURING DAILY
ACTIVITIES
Since a majority of
accidents in the home occur
during daily activities such
as bathing, toileting, and
eating, it is important to
take special precautions.
Monitor
temperatures. As
the disease progresses, the
person may have a decreased
sensitivity to temperature.
Consider setting hot water
heaters at 120 degrees and
installing automatic-mixing
or anti-scalding devices to
the faucets. Meanwhile, help
her mix hot and cold water,
and always turn off hot
water first when finished.
Also, it is important to
check the temperatures of
foods before serving to make
sure that they are not too
hot or too cold to consume.
Prevent falls.
Install walk-in
showers and grab bars in the
shower or tub and at the
edge of the vanity to enable
the person to move around
safely and independently.
Shower seats and commode
chairs are also helpful if
she has limited mobility.
Add textured decals to
slippery surfaces and apply
adhesives to keep throw rugs
and carpeting in place, or
remove them completely.
Place padding on the edge of
counters and bathroom
fixtures if they are sharp.
Supervise taking
prescription and
over-the-counter
medications. The
person may experience many
difficulties related to
medication use, either
forgetting to take them, or
taking too much. Consider
using locked pill dispensers
operated on a self-timer to
assist her. Make medicine or
kitchen cabinets less
accessible by installing
locks.
CREATING A SUPPORTIVE
ENVIRONMENT
While it is important to
make the environment safe,
it is equally important to
create an atmosphere that
supports the changing needs
of the individual with
Alzheimer's.
Encourage independent
movement. Eliminate
hazardous objects, limit
access to danger-points such
as stairwells, kitchens and
outside doors so the person
can move safely and
independently. If necessary,
make room to accommodate
walkers and wheelchairs.
Involve the person in
activities. Let her
participate in preparing
meals, rinsing the dishes,
folding clothes, raking
leaves and other activities
with your supervision. These
activities enhance
self-esteem and make her
feel more valued around the
home.
USE SURROUNDINGS TO
INITIATE ACTIVITIES
Leave out scrapbooks, photo
albums or old magazines that
help the person to reminisce
and encourage conversation.
Try using music the person
once enjoyed in the past to
prompt activities such as
dancing, clapping or other
types of exercises. It is
important, however, to keep
the noise level to a minimum
since loud distracting
sounds may cause agitation.
Create access to the
outdoors.
Encourage the person to
enjoy supervised outdoor
activities such as gardening
or walking. A backyard with
a fence allows her to safely
go outside on her own. If
she is unable to go
outdoors, consider doing
indoor activities in a room
with many windows or on an
enclosed porch.
Be prepared for emergencies.
Keep a list of emergency
phone numbers and addresses
for the local police and
fire departments, hospitals
and poison control helplines.
Check fire extinguishers and
smoke alarms, and conduct
fire drills on a regular
basis.
If the person has a tendency
to wander, enroll her in the
Alzheimer's Association's
Safe Return program. The
program is a nationwide
system designed to identify,
locate and return to safety
persons who are memory
impaired
TIPS FOR CREATING
A SAFE AND SUPPORTIVE
ENVIRONMENT
Kitchen
- Lock up cleaning
supplies
- Turn off electricity
to the garbage disposal
- Hide knives and
other utensils
- Put away the
toaster, blender, and
any small appliances
- Unplug larger
appliances such as the
microwave
- Remove knobs from
stove or hook up stove
to a hidden gas valve or
electric switch
- Keep fire
extinguisher nearby
- Clean out
refrigerator regularly
Bathroom
- Set water
temperature at 120
degrees
- Install grab bars
- Apply textured
decals on slippery
surfaces
- Supervise the use of
hairdryers, electric and
hand razors
- Remove locks from
the bathroom door
- Discard dangerous
items from the medicine
chest
Bedroom
- Avoid using electric
blankets
- Monitor use of
heating pads
- Install night lights
between the bedroom and
bathroom
Garage
- Put away hand and
power tools such as
drills, axes, saws and
picks
- Limit access to
large equipment such as
a lawnmower, weedwacker
and snowblower
- Lock up poisonous
products such paints and
fertilizers
Throughout the
home
- Disguise outdoor
locks or install
deadbolts
- Remove or tape down
throw rugs and carpeting
- Apply colored decals
to large windows and
sliding glass doors
- Remove poisonous
plants
- Create an even level
of lighting near
doorways, stairways and
between rooms
- Remove object that
block walking paths
Outdoors
- Disconnect gas
grills
- Lock gates to fences
- Supervise the person
in areas that are not
enclosed
- Put away car keys
ALZHEIMER'S
ASSOCIATION: SOMEONE TO
STAND BY YOU
The Alzheimer's Association
is the only national
voluntary organization
dedicated to conquering
Alzheimer's disease through
research and to providing
information and support to
people with Alzheimer's
disease, their families, and
caregivers. For more
information call: (800)
660-1993
http://www.alzoc.org/support
Safety: Steps to
Ensuring Safety
Preventing
Wandering and Getting Lost
When someone with
Alzheimer's disease wanders
and becomes lost, it is a
frightening experience that
puts that person at risk for
serious or fatal injury.
This article offers ways to
prevent unsafe wandering and
to prepare for an emergency
situation.
|
Wandering can be aimless or
purposeful roaming that can
cause a person to become
lost, leave a safe
environment, or intrude in
inappropriate places.
Wandering is one of the most
frequent and challenging
problems that caregivers
face.
Seven of every ten people
with dementia will wander
and become lost during the
course of the disease, and
most will do so repeatedly.
Someone with Alzheimer's
disease may not only wander
by foot but also by car or
other mode of
transportation.
Understanding Wandering
Wandering may be
triggered when a person with
Alzheimer's:
- no longer recognizes
familiar people, places,
and objects
- feels lost in a new
or changed environment
- tries to fulfill
former obligations, such
as going to work or
taking care of a child
- takes medications
that have side effects
such as restlessness and
confusion
- tries to relieve
stress caused by noise,
crowds, or isolation .
- is restless due to
lack of physical
activity
- is fearful of
unfamiliar sights,
sounds, or
hallucinations
- searches for
something specific such
as food, drink, the
bathroom, or
companionship
- looks for a way out
of the home
- experiences
confusion at certain
times of the day or
night
Preventing
Wandering
It is hard to predict when a
person will wander and
become lost. However,
caregivers can take steps to
prevent wandering incidents.
Structure the Day
Establishing a daily routine
that includes meaningful
activities and sufficient
physical exercise can help
lessen wandering behavior.
Ask the person to help with
simple household activities
such as sweeping the floor
or folding clothes. Also try
playing familiar music and
dancing or taking walks
together outdoors.
Making Your Home
Safe
To prevent unsafe exits from
the house or backyard, place
door and window locks out of
sight and reach, either very
high or very low. Use a
double-bolt door lock, and
keep the key handy in case
there is an emergency. You
may also want to:
- install high-tech
devices such as
electronic buzzers or
bells to signal when a
door is opened or place
a pressure-sensitive mat
at the door or person's
bedside that sounds an
alarm to alert you to
movement.
- put hedges or a
fence around your patio
or yard and be sure to
place locks on any
gates.
Inform Your Community
Talk to Your
Neighbors
Alert your neighbors about
the person's condition, and
keep a list of their names
and telephone numbers. Ask
that they call you if they
see the person outdoors
without supervision. Also
inform others such as the
doorman in your apartment
building or staff in the
senior residence or
retirement community where
your loved one resides.
Involve Your
Local Police
Tell your local police about
your loved one's potential
for wandering. Advise them
that the Alzheimer's
Association has a national
Safe Return program to help
police locate or return
someone who is lost from
wandering.
Survey the
Neighborhood
Identify dangerous areas
near the home, such as
bodies of water, open
stairwells, dense foliage,
tunnels, bus stops, high
balconies, and heavy traffic
roads. Check these places
first if someone becomes
lost.
Be Prepared For A
Wandering Incident
Take steps in advance to
prepare yourself in the
event that your loved one
becomes lost.
Gather Important Information
Having reliable and
accurate information will
help those involved in a
search:
- Post the Alzheimer's
Association checklist of
what to do when the
person in your care
becomes lost.
- Keep a list of the
person's age, height,
weight, hair color,
blood type, eye color,
identifying marks,
medical condition,
medication, dental work,
jewelry, allergies, and
complexion.
- Make multiple copies
of a recent close-up
photograph.
- Make a list of
places the person may
go, such as familiar
walking routes, former
neighborhoods, places of
worship, workplaces, or
favorite places.
- Keep scented
clothing on hand to give
to police. Wearing
plastic gloves, store a
piece of the person's
unwashed clothing in a
bag where it will not be
disturbed. Replace it
monthly to retain the
scent.
- Make a list of
possible dangerous areas
you have identified in
the neighborhood.
Register in the
Safe Return Program
One of the most serious
worries for a caregiver is
whether the wandering person
will return home safely. The
Alzheimer's Association Safe
Return program is the only
nationwide system that helps
identify, locate, and return
individuals with Alzheimer's
and related disorders who
wander and become lost.
Safe Return
provides:
- Identification
products for the
memory-impaired,
including a bracelet or
necklace, clothing
labels, and wallet ID
card. These products
alert others that the
individual is
memory-impaired and may
need assistance and also
list the Safe Return
24-hour crisis number.
- Registration in a
national database
including important
information that can be
accessed quickly when
someone wanders and gets
lost. This information
can be critical in
helping law enforcement
agencies and others in
their search.
- Connection to more
than 200 community-based
Alzheimer's Association
Chapters across the
country that offer
assistance and support.
Some chapters have
scholarship programs to
help pay for the
registration fee.
To register:
Complete a Safe Return
registration form. To obtain
a copy, contact your local
Alzheimer's Association:
call (800) 660-1993 or
download the form from the
Association's Web site.
Tips to Prevent
Wandering
- Check to see if the
person is hungry, needs
to go to the bathroom,
or feels uncomfortable.
- Encourage movement
and exercise to reduce
anxiety and
restlessness.
- Involve the person
in daily activities such
as folding laundry or
preparing a meal.
- Remind the person
that you know how to
find him and that he's
in the right place.
- Reduce noise levels
and confusion.
- Reassure the person
who may feel lost,
abandoned, or
disoriented.
- Alert police ahead
of time that you care
for a person with
dementia.
- Make a plan of what
to do if the person
becomes lost.
Additional
Resources
The following materials
are available from your
local chapter or the
national office of the
Alzheimer's Association:
- Just the Facts and
More-Wandering
- Steps to Planning
Activities: Structuring
the Day at Home
- Steps to Enhancing
our Home: Modifying the
Environment
- Steps to Enhancing
Communication:
Interacting with Persons
with
- Alzheimer's disease
- Services You May
Need Fact Sheet
- Safe Return Brochure
- Alzheimer's Disease:
A Guide for Law
Enforcement Officials
The Alzheimer's
Association is the only
national voluntary
organization dedicated to
conquering Alzheimer's
disease through research and
to providing information and
support to people with
Alzheimer's disease, their
families, and caregivers.
Founded in 1980 by family
caregivers, the Alzheimer's
Association has more than
200 chapters nationwide
providing programs and
services, including support
groups, to assist Alzheimer
families in their
communities. The Association
is the leading funding
source for Alzheimer's
research after the federal
government.
Information on Alzheimer's
disease, current research,
caregiving techniques, and
assistance for caregivers is
available from the
Alzheimer's Association. For
more information call: (800)
660-1993.
http://www.alzoc.org/support
How to Be a
Long-Distance Caregiver
I am miles
away.
If you are caring for
someone who lives far away,
you are not alone.
Currently, more than six
million Americans are
long-distance caregivers.
Long-distance caregiving for
someone with Alzheimer's
disease can be especially
difficult. Concerns about
your loved one's safety,
nutrition, health and care
may seem overwhelming. You
may also feel guilty and
anxious because you cannot
be there every day to see
how the person is doing.
However, with the right mix
of services, ongoing
coordination and support,
long-distance caregiving can
work.
How can I help?
How do I know what
services are needed?
Visit the person with
Alzheimer's disease to
determine what kind of
assistance he or she may
need. Make the following
observation:
- Is there appropriate
and adequate food
available?
- Is the person eating
regular meals?
- What is the
condition of the living
environment? Has it
changed?
- Are the bills paid?
- Do friends and
relatives visit
regularly?
- Is the person
maintaining personal
care routines such as
bathing and grooming?
- Is the person still
able to drive safely?
If you are unable to
answer these questions,
the person's doctor,
neighbors, family
members and friends can
be good sources of
information.
How do I make the most
of my visits?
Few long-distance
caregivers are able to
spend as much time with
their loved one as they
would like. The key is
to make periodic visits
and use your time
effectively:
- Make appointments
with your loved one's
physician, lawyer, and
financial adviser during
your visit so you can
facilitate the making of
important decisions.
- Meet with neighbors,
friends, and other
relatives so they can
share their observations
about how the person is
doing. Ask if there have
been any behavioral
changes, health
problems, or safety
issues.
- Take time to
reconnect with your
loved one by talking,
listening to music ,
going for a walk, or
doing other activities
you enjoy together.
What support systems are
available?
There are many
individuals and
organizations that can
help you locate and
arrange appropriate
services for your loved
one.
- Alzheimer's
Association chapters
provide information on
caregiving, referrals to
local services, a
Helpline , and support
groups. To locate the
chapter nearest you,
call (800) 660-1993.
- Geriatric care
managers can help assess
the individual's needs,
identify local services,
and work with
physicians, attorneys,
and other professionals
to oversee and
coordinate care. For
more information, call
the National Association
of Professional
Geriatric Care Managers
at (520) 881-8008.
- Eldercare Locator is
a free service provided
by the U.S.
Administration on Aging
to help find local
resources such as adult
day programs, respite
care elder abuse/
protective agencies,
Medicaid/MediCal
information, and
transportation. To learn
more, call (800)
677-1116 or call your
local Chapter.
- Home health care
workers can be hired to
help the person with
bathing, toileting,
preparing meals, and
taking medication. Call
your local chapter of
the Alzheimer's
Association for more
information.
- The local Area
Agency on Aging (AAA)
has services to help
with long-distance
caregiving, such as home
observation programs.
Check with your AAA to
see what programs are
available in your area.
Who else can I
turn to for support?
Establishing an informal
support system can help
ensure the person's
safety and give you
peace of mind.
- Family members and
friends can provide
companionship. Ask them
to visit once a week or
so, depending on how far
away they live.
- Neighbors can
regularly check on your
loved one. Ask if they
will remain alert to
anything unusual such as
the smell of smoke or
the sound of an alarm
coming from your
relative's home.
- Community
organizations such as
churches, synagogues,
neighborhood groups, and
volunteer organizations
often provide companion
services.
What if I need
to take time off from my
job?
Sometimes you may need
to take time off from
work to resolve a
crisis, accompany your
loved one to a doctor's
appointment, or address
a pressing legal or
financial matter.
With more than three
million working
Americans caring for
elderly parents, both
government agencies and
private businesses are
trying hard to meet the
needs of caregivers.
The Family and Medical
Leave Act (FMLA)
entitles eligible
employees to take up to
twelve weeks unpaid
leave. Check with your
employee benefits
department to see if you
are covered by FMLA.
Also be sure to ask them
about the benefits
provided by your state.
Should I move
the person with
Alzheimer's disease to
my home?
The decision to move the
person to your home is
influenced by many
factors. Here are some
things to think about
before moving the person
into your home:
- Does he or she want
to move? What about his
or her spouse?
- Is your home
equipped for this
person?
- Will someone be at
home to care for the
person?
- How does the rest of
the family feel about
the move?
- How will this move
affect your job, family
and finances?
- What respite
services are available
in your community to
assist you?
Moving a person with
Alzheimer's disease from
familiar surroundings
may cause increased
agitation and confusion.
In making the decision,
you may want to talk
with your loved one's
physician or a social
worker or call your
local Alzheimer's
Association chapter for
assistance. In some
situations, an assisted
living or a residential
care setting may be a
better option for the
individual.
What if I care for a
person who lives in a
care facility?
Whether your loved one
lives in an assisted
living or residential
care facility, it is
important to maintain
ongoing communication
with the care staff and
friends who visit
regularly. Here are some
suggestions:
- Work with the
managing nurse and
physician. Agree on a
time when you can call
to get updates on the
person's condition.
- Call family,
friends, or other
visitors and ask for
their observations.
- When you visit, meet
with the staff members
who care for the person
most.
What if I am not
the primary caregiver?
The primary caregiver
may be a spouse,
sibling, or another
relative that lives with
or close to the person
with Alzheimer's. As a
long-distance family
member, supporting the
primary caregiver is one
of the most important
things you can do. Here
are some ways to help:
- Stay in close touch
with both the caregiver
and the person with
Alzheimer's through
telephone calls, cards,
e-mail, etc.
- Recognize that the
primary caregiver must
make final decisions. He
or she provides the
daily care and is
usually the best person
to decide what needs to
be done.
Plan periodic visits
to give the caregiver a
break. You can spend
time with the individual
or run errands for the
caregiver.
How do I deal
with family conflicts?
It is possible that the
primary caregiver may
feel resentment toward
you for living far away
or believe you are not
helping enough. And you
may disagree with the
caregiver's decisions or
feel shut out. To
minimize conflicts, try
to acknowledge these
feelings and work
through them. Here are
some suggestions:
Recognize
differences. Some family
members may be hands-on
caregivers, responding
immediately to issues
and organizing
resources. Others may be
more comfortable with
being told to complete
specific tasks.
Continue to
communicate. Periodic
family meetings or
conference calls keep
the family up-to-date
and involved. Discuss
how things are working,
reassess the needs of
both the person with
Alzheimer's and the
caregiver, and decide if
any changes in
responsibilities are
needed.
What additional
resources are available?
The following resources
are available from your
local chapter or the
national office of the
Alzheimer's Association:
Respite Care guide:
How to Find What's Right
for You
Steps to
Understanding Legal
Issues: Planning for the
Future
Steps to
Understanding Financial
Issues: Resources for
Caregivers
Steps to Enhancing
Communication:
Interacting with Persons
with Alzheimer's disease
Residential Care: A
Guide for Choosing a New
Home
The Alzheimer's
Association is the only
national voluntary
organization dedicated
to conquering
Alzheimer's disease
through research and to
providing information
and support to people
with Alzheimer's
disease, their families,
and caregivers.
Founded in 1980 by
family caregivers, the
Alzheimer's Association
has more than 200
chapters nationwide
providing programs and
services, including
support groups, to
assist Alzheimer
families in their
communities. The
Association is the
leading funding source
for Alzheimer's research
after the federal
government.
Information on
Alzheimer's disease,
current research,
caregiving techniques,
and assistance for
caregivers is available
from the Alzheimer's
Association. For more
information or to locate
the chapter nearest you
call: (800) 660-1993.
http://www.alzoc.org/support
<<Back to Top>>
|
Help for Patients
and Caregivers : Asthma
|
|
This
website can help you learn
how to control your asthma
or help a friend or family
member with asthma. Asthma
Asthma Is a
Serious Lung Disease
Asthma makes the sides of
the airways in your lungs
inflamed or swollen all the
time. See the drawing below.
Your airways react to things
like smoke, dust, pollen, or
other things. Your airways
narrow or become smaller and
you get common symptoms like
those listed in the box.
Asthma that is not well
controlled can cause many
problems. People miss work
or school, go to the
hospital, or even die
because of their asthma. But
you do not have to put up
with the problems asthma can
cause.
What Causes
Asthma?
The cause of asthma is
still unknown. From studying
asthma patients, researchers
have concluded that the
following factors can lead
to asthma:
Genetic Factors:
Asthma has the tendency to
run in families. It has not
yet been determined what
genetic factors actually
play a part in determining
if a person will be
diagnosed with asthma.
Individuals who have
allergies are more likely to
have asthma as well.
Air Quality:
General environmental
factors such as house dust
mites in bedding, carpet ad
furnishings, exposure to
tobacco smoke during
pregnancy or as a small
child, and children who are
exposed to animals, pollens,
molds and dust are more
likely to have asthma. The
occupational environment
also has a large influence
on our likelihood of having
asthma. Pollens, molds,
dust, gases and chemicals
can cause our airways to
become weak. The following
are some examples of
hazardous occupations likely
to cause asthma:
manufacturing, woodworking,
farming and working with
chemicals.
Dietary Changes:
An increase in processed
food, increase in salt
intake, decrease in
antioxidant intake and the
lack of fresh oily fish may
all increase the chances of
cause asthma.
Lack of exercise:
In the 21st century there
has been an increase in the
amount of television that is
watched and a decrease in
the amount of physical
activity. This decrease in
physical activity can cause
a decrease in the strength
of the airway passage
causing the airway muscles
to abnormally contract when
irritated by environmental
changes.
Your Asthma Can
Be Controlled With Proper
Care
With your doctor’s help, you
can control your asthma and
become free of symptoms most
of the time. But your asthma
does NOT go away when your
symptoms go away. You need
to keep taking care of your
asthma.
Your asthma cannot be
cured—having asthma is a
part of your life. So you
need to make taking care of
your asthma a part of your
life. This is true even if
your asthma is mild.
How To Work
With Your Doctor
- Agree on clear
treatment goals with
your doctor. Your
goal is to be able
to say “no” to all
the questions in the
box on section
titled, “Is
Your Asthma Under
Control?”
- Agree on what
things you need to
do. Then do them.
- Ask questions
until you feel you
know what your
doctor wants you to
do, when you should
do it, and why. Tell
your doctor if you
think you will have
trouble doing what
is asked. You can
work together to
find a treatment
plan that is right
for you.
- Write down the
things you are
supposed to do
before you leave the
doctor’s office, or
soon after.
- Put up reminders
to yourself to take
your medicine on
time. Put these
notes in places
where you will see
them.
- See your doctor
at least every 6
months to check your
asthma and review
your treatment. Call
for an appointment
if you need one.
Prepare a day
or two before each
doctor’s visit:
- Answer the
questions in “Is
Your Asthma Under
Control?”. Talk
to your doctor about
your answers. Also,
talk about any
changes in your home
or work that may
have made your
asthma worse.
- Write down
questions and
concerns to discuss
with your doctor.
Include ALL of your
concerns, even those
you think are not a
big deal.
- Bring your
medicines and
written action plan
to each visit. If
you use a peak flow
meter, bring it to
each visit.
“The doctor would
ask me at each visit how
little Jimmy’s asthma
was. I always forgot to
mention some symptoms or
other problems. Now it’s
different. Before we
visit the doctor, I
write down when Jimmy
had symptoms in the past
2 weeks. I also write
down all the questions I
have. Now when I leave
the doctor’s office, I
feel happy that I got
all my issues
addressed.”
- Deborah,
mother of a child
with asthma
Is Your
Ashma Under Control?
Answer these
questions by
checking "yes" or
"no." Do this just
before each doctor's
visit.
In the past 2
weeks |
|
1. Have you coughed,
wheezed, felt short
of breath, or had
chest tightness:
|
|
- During the
day? |
_______ Yes
|
_______ No
|
|
- At night,
causing you to wake
up? |
_______ Yes
|
_______ No
|
|
- During or
soon after exercise?
|
_______ Yes
|
_______ No
|
|
2. Have you needed
more "quick-relief"
medicine than usual?
|
_______ Yes
|
_______ No
|
|
3. Has your asthma
kept you from doing
anything you wanted
to do? |
_______ Yes
|
_______ No
|
|
If yes, what
was it? |
|
|
|
____________________________________________________________ |
|
____________________________________________________________ |
|
4. Have you asthma
medicines caused you
any problems, like
shakiness, sore
throat, or upset
stomach? |
_______ Yes
|
_______ No
|
|
In the past
few months:
|
|
|
|
5. Have you missed
school or work
because of you
asthma? |
_______ Yes
|
_______ No
|
|
6. Have you gone to
the emergency room
or hospital because
of your asthma? |
_______ Yes
|
_______ No
|
|
|
What Your
Answers mean
|
|
|
- All "no"
asnwers? -
Your asthma is under
control.
- One or
more "yes" answers?
- Something needs to
be done. Read the
guide on how to get
your asthma under
control and talk to
your doctor. |
|
|
Taking the Right
Medicines at the Right Times
There are two main kinds of
medicines for asthma:
(1) those that help with the
long-term control of asthma
and
(2) those that give
short-term quick relief from
asthma symptoms.
See the list of brand and
generic names for asthma
medicines.
Long-Term-Control
Medicines Are Taken Every
Day To Control Asthma
Long-term-control medicines
will prevent symptoms and
control asthma. But it often
takes a few weeks before you
feel the full effects of
this medicine.
Ask your doctor
about taking daily
long-term-control medicine
if you:
- Have asthma symptoms
three or more times a
week, or
- Have asthma symptoms
at night three or more
times a month.
If you need a
long-term-control medicine,
you will need to keep taking
your medicine each day, even
when you feel well. This is
the only way you can keep
your asthma under control.
Make taking your long-termcontrol
medicine a part of your
daily routine—just like
eating, sleeping, and
brushing your teeth.
The
Long-Term-Control Medicines
The most effective
long-term-control medicines
are those that reduce
swelling in your airways
(inflammation). These
medicines include inhaled
steroids, cromolyn, and
nedocromil.
- Inhaled steroids and
steroid tablets or
liquids are the
strongest
long-term-control
medicines. The steroids
used for asthma are NOT
the same as the unsafe
steroids some athletes
take to build muscles.
- Inhaled steroids
are used to prevent
symptoms and control
mild, moderate, and
severe asthma.
Inhaled steroids are
safe when taken at
recommended doses.
This is because the
medicine goes right
to your lungs where
you need it. This
reduces the amount
of medicine you need
and the chance of
any side effects.
- Steroid tablets
or liquids are used
safely for short
times to quickly
bring asthma under
control. They are
also used longer
term to control the
most severe asthma.
- Cromolyn and
nedocromil are often the
choice of medicine for
children with mild
asthma.
- Inhaled long-acting
beta2- agonists are used
to help control
moderate-to-severe
asthma and to prevent
nighttime symptoms.
Long-acting
beta2-agonists do not
reduce inflammation.
Therefore, patients
taking this medicine
also need to take
inhaled steroids.
Inhaled longacting
beta2-agonists should
not be used for quick
relief of asthma
attacks.
- Sustained-release
theophylline or
sustained-release beta2-
agonist tablets can help
prevent nighttime
symptoms. These
medicines are used with
inhaled steroids,
nedocromil, or cromolyn.
Theophylline is
sometimes used by itself
to treat mild asthma.
The dose for
theophylline must be
checked over time to
prevent side effects.
- Zileuton and
zafirlukast are a more
recent type of long-termcontrol
medicine. Studies so far
show that it is used
mainly for mild asthma
in patients 12 years of
age and older.
Quick-Relief
Medicines Are Taken Only
When Needed
Inhaled quick-relief
medicine quickly relaxes and
opens your airways and
relieves asthma symptoms.
But it only helps for about
4 hours. Quick-relief
medicine cannot keep
symptoms from coming
back—only long-termcontrol
medicines can do that.
Take quick-relief
medicine when you first
begin to feel symptoms— like
coughing, wheezing, chest
tightness, or shortness of
breath. Your doctor may tell
you to use a peak flow meter
to help you know when to
take your inhaled
quickrelief medicines. Do
not delay taking your
quickrelief medicine when
you have symptoms. This can
keep you from having a
really bad asthma attack.
Tell your doctor if you
notice you are using more of
this medicine than usual.
This is often a sign that
your long-term-control
medicine needs to be changed
or increased.
Make an Action
Plan With Your Doctor
Be sure
you know when to take your
medicine and what to do when
your asthma gets worse.
|
Asthma
Medicines: Brand and
Generic Names, 1997*
|
|
Asthma
Long-Term
Control
Medications
|
|
Generic Name
|
Brand Name
|
|
|
Steroids:
Inhaled |
|
|
belomethasone |
Beclovent®
Vanceril®,
Vanceril®—Double |
|
Strength |
|
|
budesonide |
Pulmicort
Turbuhalor® |
|
flunisolide |
AeroBid®,
AeroBid-M® |
|
fluticasone |
Flovent® |
|
triamcinolone |
Azmacort® |
|
|
Cromolyn and
Nedocromil:
Inhaled |
|
cromolyn
sodium |
Intal® |
|
nedocromil
sodium |
Tilade® |
|
|
Leukotriene
Modifiers:
Tablets |
|
zafirlukast |
Accolate® |
|
zileuton |
Zyflo® |
|
|
Long-Acting
Beta2-Agonists |
|
salmeterol
(inhaled)
|
Serevent® |
|
albuterol |
Volmax® |
|
(extended
release
tablets) |
Proventil
Repetabs ® |
|
|
Theophylline:
Tablets or
liquid |
| |
Aerolate®
III
Aerolate® JR
Aerolate® SR
Choledyl® SA
Elixophyllin®
Quibron®-T
Quibron®-T/SR
Slo-bid®
Slo-Phyllin®
Theo-24®
Theochron®
Theo-Dur®
Theolair®
Theolair®-SR
T-Phyl®
Uni-Dur®
Uniphyl® |
|
|
Asthma
Quick-Relief
Medications |
|
Generic Name
|
Brand Name
|
|
|
Short-Acting
Beta2-Agonists:
Inhaled |
|
albuterol |
Airet®
Proventil®
Proventil
HFA®
Ventolin®
Ventolin®
Rotacaps |
|
bitolterol |
Tornalate® |
|
pirbuterol |
Maxair® |
|
terbutaline |
Brethaire®
Brethine®
(tablet
only)
Bricanyl®
(tablet
only) |
|
|
Anticholinergics:
Inhaled |
|
ipratropium
bromide |
Atrovent® |
|
|
Steroids:
Tablets or
liquids |
|
methylprednisolone |
Medrol® |
|
prednisone |
Prednisone
Deltasone®
Orasone®
Liquid Pred®
Prednisone
Intensol® |
|
prednisolone |
Prelone®
Pediapred® |
|
|
|
|
* This
glossary is
a complete
list of
brand names
associated
with the
appropriate
generic
names of
asthma
medications,
as listed in
the United
States
Pharmacopeial
Convention,
Inc.,
Approved
Drug
Products and
Legal
Requirements,
Volume III,
17th
edition,
1997, and
the USP DI
Drug
Information
for Health
Care
Professionals,
Volume I,
17th
edition,
1997. This
list does
not
constitute
an
endorsement
of these
products by
the National
He | | | |
