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Got questions, concerns, suggestions or just want to say hello? Need someone
to vent to about your situation? Are you feeling very alone? Just send me an e-mail and I'll be here for you if you need someone.
I'm always available to chat or exchange ideas or to just listen!
 
throughout this webpage concerning
caregiving anxiety...
you will see many "emotion words" that are underlined
as a link....
throughout your journey
with caregiving anxiety, as well as your own "personal discovery" journey you may be
confused about what you are feeling.
clicking on the underlined emotion words will take you to the emotional feelings network of sites! ... one of the sites
in the network that will offer you information that may be helpful in understanding the meaning of your emotions, how to cope with emotions & how to resolve emotions.
...take the trip, it's worth the side track & then click on the link on the top left hand side of each emotion page to travel back here - anxieties 101!
  What is caregiving?
Caregiving means "caring for other(s), whether friends or relatives, who have health problems or disabilities & need help.
Caregivers provide many kinds
of help to care receivers, from grocery shopping to helping with daily tasks such as bathing, dressing, & eating. Most people who need help from caregivers are elderly.
- About 1/4 of US families
are caring for an older family member, an adult child with disabilities, or a friend.
- According to recent surveys,
more than 7 million persons are informal caregivers to older adults. Caregivers include spouses, adult children, & other
relatives & friends.
Other surveys found that almost
26 million family caregivers provide care to adults (aged 18+) with a disability or chronic illness
5 million informal caregivers
provide care for older adults aged 50+ with dementia.
- Studies show that more than
1/2 of caregivers are women. Care receivers are about 1/2 women & 1/2 men.
- The average amount of time
that caregivers spend on care giving is about 20 hours per week. Even more time is required when the care receiver has multiple
disabilities.
- Caring for a person with disabilities can be physically demanding, especially for older caregivers, who make up 1/2 of all caregivers.
- 1/3 of all caregivers describe
their own health as fair to poor.
- Caregivers often worry that
they will not outlive the person for whom they are caring.
- Caregivers often suffer from
depression. Caregivers are also more likely to become physically ill.
Caregiver stress is a daily
fact of life for many caregivers. Caregiving often takes a great deal of time, effort and work. Many caregivers struggle to
balance caregiving with other responsibilities including full-time jobs and caring for children.
Constant stress can lead to "burnout" and health problems for the caregiver. Caregivers may feel guilty, frustrated and angry from time to time. Caregivers often need help caring for an elderly or disabled care receiver. Sometimes other family members or friends and neighbors are able to help, but many caregivers do most or all of the care giving for a loved one alone.
Research has shown that caregivers often are at increased risk for depression and illness.
The caregiver must cope with declining abilities and difficult behaviors. Basic activities of daily living often become hard to manage for both the
care receiver and the caregiver. As the disease worsens, the care receiver usually needs 24-hour care.
What can caregivers do to prevent stress & burnout?
Caregivers
can call upon others for support & assistance. Other family members, friends & neighbors may be able to help in different ways. It may not be easy
to ask for help & you may need to make very specific requests. But getting help from others will benefit you & the person you are caring for.
Respite care can be
a good way to get a break (respite) from constant caregiving. If other caregivers aren't available to fill in for the main
caregiver, respite care services may be available in the community.
- Eat a healthy diet rich in fruits, vegetables & whole grains & low in saturated fat. Ask your health care provider about taking a multivitamin
as well.
- Try to get enough sleep & rest.
- Find time for some
exercise most days of the week. Regular exercise can help reduce stress & improve your health in many ways.
- See your health care provider
for a checkup. Talk to your provider about symptoms of depression or illness that you may be having. Get counseling if needed.
- Stay in touch with friends.
Social activities can help keep you feeling connected & help with stress. Faith-based groups can offer support & help to caregivers.
- Find
a support group for other caregivers in your situation (such as caring for a person with dementia). Many support groups are available online thru the Internet.
In the near
future, I may help an aging relative....
You have a growing concern that w/in the next 12 to 18 months, your aging relative will need more of your assistance & time.
You should:
Research
options
- Gather
information
- Provide the opportunity
for your care recipient to share his or her feelings & values
This is also your time to:
- Keep up with family &
friends
- Enjoy your hobbies &
interests
- Take trips you've always
dreamed of
Although an immediate
crisis may not be facing you; the reality of one seems to be looming in your future. Rather than closing your eyes to avoid seeing that horizon, you can take some proactive steps now that will make your future care giving days easier.
If
you're expecting to be a caregiver in the future, you can begin to research:
- A good lawyer familiar with
elder care issues
- Durable powers of attorney
for health care, living wills; ask when to start the process to ensure that the necessary legal papers are in order
- Financial situations - Knowing
the financial status can help determine future health care choices. Determine monthly income from pensions & social security;
learn about annuities, stock investments & bank accounts.
- Community health care options
- What home health care agencies in your area offer quality, affordable home care? What housing options are available: retirement
communities, assisted living centers? Contact community organizations to request brochures & pamphlets.
Your aging relative's current living condition can
have a bearing on the future.
-
Will your aging
relative be able to reside safely in her home if she uses a wheelchair, becomes bed bound?
-
What changes can you make today that will prevent future barriers to providing care in her home?
-
Are the necessary
changes almost an impossibility?
If so, what other
options do you have:
Talk with your aging
relative about his or her wishes for the future. Ask questions now about your relative's care preferences. This will
help you provide the care your relative wants.
- Where does your relative
want to die?
- At home?
- At a care facility?
- What type of funeral
would your relative want?
- Does your relative
have a preference as to whom in the family provides care?
- How does your relative
feel about end-of-life care decisions?
Although you
may not be able to meet all your relative's wishes, you can begin to plan now to meet at least the most important.
Review current health care providers by asking,
- Who are the physicians?
- What is the diagnosis?
- What medications will be used?
- Why those medications have been prescribed?
Concentrate on the reality
of the situations by keeping a realistic view of their situations:
- What's the worst that could
happen?
What's the best possible outcome?
What options are available
for each of these outcomes?
Start a journal to chronicle
your feelings, your concerns & your actions.
You may be surprised at your
feelings of loss. Your preparation of the future allows you to see what your care recipient & you might lose. You both will experience
changes in your relationship, your schedules, your amount of freedom.
Write down
your thoughts about the potential losses & how you might be able to hang on to them, through minor adjustments & changes, for a little longer.
If you've been
caring for an aging relative for 6 months to 18 months, your duties may range from errand-running & bill paying
to hands-on care. It's very important that you try to find services that help; find support that comfort while you continue to find ways to enjoy your hobbies & interests.
Your entry into the caregiving role
is a time to experiment, to get your feet wet & see what works. This is your opportunity to learn how the health care
industry works with & sometimes against you. Now is the time to shape your caregiving personality:
- What duties are you comfortable with?
- What duties make you uncomfortable?
- How well are
you & your care recipient getting along?
What situations would create
overwhelming stresses for both of you?
What situations should you try to avoid because you know they will lead to nasty fights & bitter arguments?
You'll get a feel
for the present & future budgets needed to provide the care your care recipient requires. In addition, keep up with your hobbies & interests (you may be able only to keep the ones that you enjoy most), ensuring you have made a habit of spending time on your own,
enjoying yourself.
As a "beginner caregiver":
- Learn as much as you can about your care recipient's illness, disease or condition. Consult the local branches
or chapters of national organizations such as The Arthritis Foundation, the Alzheimer's Association, The Cancer Society. Know
what the future holds for you & your care recipient concerning their medical conditions?
- Learn how
to provide proper care from health care professionals or from health care videos, manuals or books.
- If your
care recipient is hospitalized or receives short-term therapy at a nursing home, ask the staff to show you proper caregiving
techniques: lifting, transfers, bathing. Or, search the Internet for hands-on care information.
- It's very
difficult to provide care when you are unsure of what you're doing. You'll feel much better when you're confident of your skills. Read as much as you can find - get educated.
- Join a support
group, either online or in your community. It's so isolating to be a caregiver! Support groups will hook you up with others in similar situations; often, you'll learn of community resources
& options from other caregivers that you were not aware of.
- Make arrangements so you
can count on regular breaks from care giving. You can't be a good caregiver to someone else if you don't take care of yourself.
Plan for regular breaks, an hour daily, an afternoon weekly, or a day monthly, whatever you can manage.
Enlist the help of relatives
& community services (such as a volunteer group at your local church) so you can take time off regularly. Relatives can help in many ways, through
financial support, social support (calling the care recipient regularly just "to talk"), as well as respite
support.
- Rely on help from community
organizations. Meals on Wheels, home care agencies & day care centers, to name just a few, may offer services that your
care recipient needs.
- Contact your local Area Agency
on Aging for a listing of services & organizations in your community. Visit your local medical equipment supply store
to find devices & gadgets that enhance your care recipient's abilities while allowing independence from you.
- In addition, ask about local,
state or federal programs that might provide financial assistance for you &/or your care recipient. As your care recipient's
care needs increase, so will the costs associated with his or her care. Understanding what programs can help, in addition to understanding what your care recipient can afford, will help you plan appropriately for the future.
- Keep in mind what your care
recipient's wishes are. If appropriate, ask for his or her input & ideas. Does your care recipient still feel good about living at home? What does your care recipient fear or dread? (These are also good questions to ask yourself!)
by Avrene L. Brandt, Ph.D.
More About Avrene
In this article we will look
at how caregivers cope with the emotional stresses that may come with being a caregiver to a loved one with a chronic condition.
The emotional
facet of our being co-exists with our intellectual, physical and spiritual facets. Our emotional reactions begin
when we are infants which, at that time, are quite undifferentiated alarm when basic needs aren't met and contentment when needs are satisfied. Gradually, over time, emotions become differentiated until they evolve into the emotions we experience as adults:
As we mature, we each develop an individual style of dealing with our emotions. Our personal style becomes set fairly early on, so that, without even thinking, we react to various emotional stimuli in our own particular way.
For example, the person who, when frustrated goes into a rage, vs.the person who keeps his frustration inside and develops a headache.
We learn our emotional reactions
by example, by being taught and by experience, that is, finding out what works for us. This isn't necessarily a conscious,
cognitive process. For many of us, we would have to stop and think, " Well, what do I do when I'm afraid, frustrated, etc."
Our emotional response
then is automatic, not necessarily rational and not always adequate. With that as a foundation, the caregiver comes to the role more or less prepared to deal with emotions, although she is almost never prepared enough for the enormous emotional challenges that will be encountered.
It therefore serves us well
to take a more concrete, problem solving approach to caregiver emotional reactions, rather than assuming that our usual way
of coping with negative emotions will suffice.
What is the goal? If you set
unrealistic expectations of cure, or expect to turn back the clock, you will sink before you begin. However, even assuming you have accurately assessed these two factors,
it is still helpful to take a problem solving approach to the emotions you may feel.
Let us first look at how we
learn to deal w/emotions. As noted above, early on we develop our own style. As part of that style, we use psychological defenses in order to deal w/feelings, especially unacceptable or threatening feelings. We develop preferred defensive styles when we are young.
Defenses, despite their bad rap, aren't necessarily negative. They prevent us from being overwhelmed by emotions since they can give us time to regroup. For example:
When a family hears the diagnosis
of Alzheimer's Disease in a loved one, they may initially respond w/ denial -
" Its not Alzheimer's Disease. He's just getting older & having some memory problems."
Denial here gives time for a breather & a gathering of resources.
Denial, like other psychological defenses only becomes a problem when it goes on & on & interferes with coping & problem solving.
Another defense, rationalization, is an attempt to justify something that is not reasonable in order to make it acceptable. For example, the caregiver who is depressed by the restrictions of taking care of a loved one, rationalizes that no one else can do the job as well & therefore continues
feeling trapped & overworked.
Psychological defenses are used to deal with emotions but too often do not provide enough of an answer.
Overcoming Caregiver Stress
Practically, the obvious first
recommendation for overcoming caregiver stress, whether it is physical, emotional, or time limitations, is to take care of yourself. Caregivers hear this often. It is not a new idea.
It's just that caregivers
don't take time because they're too busy to figure out what this means for them. Taking time to meet your needs has tremendous payoff in terms of your ability to deal with emotional stress.
This means making sure you
have adequate rest, nutrition, & exercise. More specifically it may be helpful to take time for one of the
relaxation techniques such as yoga or mediation.
To successfully use any activity for stress reduction, however, one must plan & set up a specific realistic time when it can be done. Similarly, time away at an activity, which brings pleasure, must be planned.
Whether the activity is a
brief extended venture, it won't happen by just saying you should do it. You must make a definite plan & follow through.
Develop a support system, that is a community of friends, relatives,
& professionals who will be resources for you. Make a list of people:
- On whom you can rely on for specific tasks & assistance
- On whom you can share your feelings
- Who can help with transportation
- Who can stay w/your loved one for a while
- With whom can you go out & have a good time
- To whom you can go when you need professional help
To deal w/emotions more specifically, you must become proactive
so that the same emotional stress does not repeatedly wear you down. Usually it is certain situations w/an impaired loved
one that are the trigger for upsetting emotional reactions. You won't always be prepared & in control but being aware
& planning ahead can help a lot.
There are also steps that are useful in
understanding & dealing w/your feelings.
- Identify the feeling. You must first know what it is that you
feel. Anxiety, anger, depression are qualitatively different & have different antecedents.
- Admit that you have the feeling even though it is unpleasant
& accept that it is yours.
- Take a step back & gain some distance from the situation. Go to the next room. Take a walk.
- Analyze. Use the time to figure out what triggers the
feeling. What it is about a situation that makes you feel a certain way? How do you react? What does the situation mean to
you?
- Talk about your feelings w/someone who you trust, or write them down to express them. Sometimes writing
helps one to understand, & begins the problem solving process. Talk to a professional if you are getting overwhelmed.
- Make a plan. Figure out what you can do differently
when you recognize that feeling again. Make the plan very concrete. Its like dieting. You can't just say I'm going to start
tomorrow. You have to know specifically what you will change & how.
- Remember there must be a balance between your needs
& those of your loved one. Be comfortable w/your limits. This means accepting what you are realistically able to do. Remember to
be a good caregiver & to go beyond caregiving, your life must continue & be meaningful.
Before getting into specific suggestions, there are few points
to keep in mind:
- At all times, be supportive but not condescending.
- Remember, you are not responsible for your companion's recovery.
You are doing what you can but the majority of the healing must come from within.
- Don't blame yourself if the person has a panic attack or is
unable to complete the outing. It's not your fault.
- Don't feel there is something you must be able to do help the
person get over a panic attack. There is little you can do. If at home, the person may want to be held or just left alone.
If you are out, he or she may want to just sit for a few minutes or return home.
- The person you are with is in charge; he or she calls the shots.
If she or he wants to abort the outing, abort; to go somewhere other than where you planned, go there. That person, not you,
knows what feels most comfortable.
- After a few outings, try to have someone else come along so
that the person you are supporting can begin to feel comfortable with the other person. Eventually, you don't have to be present
all the time.
- Don't wear yourself out. For your own health, there may be
times you have to say "no" to a request.
- You may not understand panic attacks, but never tell the person
that it's all in her or his head, that he or she could go out if she or he really wanted to. PA's and anxiety don't work that
way.
- Don't call outings "practices"; "practice" seems not to expect
less than success. Since there is no specific goal, how can one fail? Every outing is successful if looked at correctly.
- As part of your support role you may have to remind the person
that backsliding is normal, assure them that they are sane & that they are not having a heart attack or other physical
trauma.
- Don't be upset if you get snapped
at occasionally. The person may be very up-tight.
Practical guidelines for going out together:
- Don't make a big deal of it. The person is probably anxious,
& to plan as though you were preparing an invasion will make him or her more anxious. How much planning & structure
is required varies from person-to-person & will probably change over time.
- If you are not familiar with the place you plan to go
to, go ahead of time to case it out. See which areas will seem confined, find the exits, ask about times when it is not too
crowded. Know where the stairs are located in case escalators or elevators are a problem. Being able to tell the person you
know the area may make her or him feel less anxious.
- If the person wants you to stay w/them do so, like glue.
It's not his or her job to keep an eye on you. It's your job to keep your eye on her or him.
- If your companion wants to hold your hand or suggests you stay
a few feet back from them, do what she or he requests.
- Always have an agreed upon central place picked out at which
to meet in case you accidentally become separated. Once it is obvious you have lost the person go directly to that spot. Do
not waste more time looking. He or she will feel more comfortable if she or he knows you will be there.
- If the person wants to leave you for a while, set a definite
time & place where you will meet. Don't be late. It is better to be early in case he or she arrives early.
- The only responsibility w/which to charge your companion is
to let you know if she or he feels overly anxious or panicky. Frequently you can't tell from just looking at him or her.
- If the person indicates that she or he is becoming anxious
ask them what they would like to do, take a few deep breaths? sit down? go to a restaurant? leave the building? return to
the car? A break may be all that is needed for his or her anxiety to diminish. She or he may want to go home or return to
the place you have left. That is up to him or her. Ask the question but don't push.
- If your companion has an unmanageable panic attack lead her
or him from the area to a place where he or she feels safer. Don't forget to see that there are not inadvertently unpaid for
items in her or his hands. They probably won't be thinking of them.
- Don't add stress by giving the impression that there is something
YOU must absolutely accomplish before returning home. The free permission to return home at any time is now gone.
Journaling
Journaling is one way to express your thoughts, feelings, and
experiences through writing or audiotaping. Journaling is a safe, personal and private activity that may help you release
stress and clear your mind.
How To Journal
- You do not have to be a writer to journal, and there are no
right or wrong ways to journal. Journaling is for you alone, so it is whatever you want it to be. Some suggestions for keeping
a journal include:
- Keep paper and pen nearby. You can write in your journal everyday
or whenever you feel the need to express yourself. Do not pressure yourself to write. The words will come to you when you
are ready to release your feelings and clear your mind.
- Let your thoughts flow. Do not worry about grammar or punctuation.
Remember, you are the only one reading your journal and it only needs to make sense to you.
- You can write on any paper, in a notebook, a diary, a journal,
and even on a napkin or the back of cards, etc.
- You can draw pictures if writing is not a favorite activity.
You dont have to be an artist.
- Remember that your journal is yours alone, a private expression
of your thoughts and feelings. No one should read your journal without your invitation or permission.
- If you are unable to write or writing is not comfortable for
you, you can record you thoughts and feelings on audiotape. If you need help finding a cassette recorder, ask your health
care professional for assistance in finding equipment that is easy to use.
What You Can Journal
You can write about anything that is important to you. Some
suggestions of things to include in your journal are:
- Your feelings and emotions
- Your fears
- Your accomplishments
- Major events in your life
- Your life story
- Favorite memories
- Favorite pictures
- Your hopes
- Your dreams
- Daily experiences
- Relationships and what they mean to you
- Conflicts
- Poetry or favorite quotes and what they mean to you
- Anything that is causing you physical, emotional, and/or
spiritual comfort or discomfort
Caring for Yourself While Caring for Others: Removing the Barriers to Self Care
The caregiver's well-being caregiver is the foundation of caregiving. The cares of your friend or family member depends on your ability to physically, emotionally and spiritually respond to their needs as well as to your own.
Some
of the more common barriers to self-care are based on myths about self-care. Simply put, self-care is about meeting your needs so that you are physically, emotionally and spiritually ready to meet the needs of your friend or family members.
There
are no rules about self-care except it should help you to feel replenished, comforted or relaxed. Below you will find some of the more common myths about self-care, methods of removing barriers to self-care and things to consider as you take care of yourself.
Myths about Self-care:
Myth: Self-care means time away from your friend or family member.
Reality: Self-care can occur with or without your friend or family member present.
Myth: Self-care takes a lot of time.
Reality: Depending
on the activity, self-care can take only minutes. Reading a morning meditation may only take minutes but the effect can last all day.
Myth: Self-care is something you must learn to do.
Reality: What
brings you pleasure, enjoyment, relaxation or replenishing is unique to you. Choose what works for you and do it.
Removing the Barriers:
- Adjust the time you perform your
activity. Daily routines are often changed by caregiving needs. It may be time to select a new time and day to do your favorite activity.
- Adjust the location of your activity.
Before you give up your lunch with friends, think about having your friends bring lunch to your home. If possible, arrange to have someone sit with your friend or family member
while you receive the support you need to continue caring.
- Adjust length of your activity.
A quick walk around the block will never replace the long walks you once enjoyed. However, that quick walk can help you meet
your caregiving challenges.
Taking Care of You:
- Keep Familiar Activities.
This may not be the best time in your life to learn a new self-care activity. Think about things you did in the past that you enjoyed and do those things.
- Keep Your Commitment to Yourself. Plan to take care of yourself. Make the necessary arrangements needed or plan the activity at a convenient time.
- Keep it Real. There may be
several activities that will never work in your caregiving situation. Plan activities that will work for you.
- Keep it Simple. The more
complex the activity, the less achievable it may be. Below you will find a list of simple activities that other caregivers
have found helpful. Many can be performed alone or shared with the friend or family member you are caring for.
- Create your Sacred Space:
This could be a room, a table of things or a chair near a window. Create your space.
|
Time Alone |
Shared Moments |
|
Gardening/Walking
Exercise
Take a hot bath/shower
WatchTV/movie
Meditate/Pray
Receive
a massage
Take a few minutes to read greeting cards while you shop
Escape in a book |
Listen to music
Create a special meal (cook special
recipe or order in)
Create a memory album
Work on a quilt or other craft project
Watch a favorite movie
Call a
friend |
Caregiving can be very demanding
at times. But caring for a friend or family member can also be one of life's most rewarding experiences. Time is needed to experience the reward and prepare to care again.
A wise person once said, "you can't draw water from a empty well." This saying is true when applied to caregiving. Self-care doesn't
take a lot of time neither does it have to be time away from your family or loved one.
Self-care does take a commitment and an understanding that our bodies, like wells, need to be replenished in order to keep giving. Take time to keep your well filled.
10/16/03 Growing Number of Grandparents Are
Caregivers: Census
More grandparents than ever
are raising their grandchildren & a significant portion of them are living in poverty, according to a Census Bureau report
released Thursday.
The report, culled from 2000
census data, says 2.4 million grandparents are primary caregivers to their grandchildren & about 1/3 of them live in a
home without the child's parents. In many cases, it's because one or both parents are in jail or on drugs, the Associated
Press reports.
In addition, the report found,
about 19% of grandparent caregivers lived below the poverty line in 1999, compared to 14% of all families living with children.
Grandparents acted as
caregivers most often in American Indian & black families; about 56% & 52% respectively. The grandparent-as-caregiver
rates were 43% among whites, 35% for Hispanics & 20% for Asians.
10/20/03
What Leads to Cognitive Decline Study identifies risk factors associated with mild impairment
(HealthDayNews) Mild cognitive impairment (MCI) experienced by the elderly may be associated w/cerebrovascular
disease, depression & racial factors.
Those clues come in research
published in the October issue of the Archives of Neurology.
People w/MCI are at higher
risk for developing dementia, especially Alzheimer's disease. MCI is characterized by demonstrable cognitive impairment including
memory problems but without dementia. Prevalence of MCI among the elderly increases w/age.
The researchers, led by Dr.
Oscar L. Lopez of the University of Pittsburgh School of Medicine, studied thousands of people who took part in the Cardiovascular
Health Study (CHS) Cognition Study who had magnetic resonance imaging (MRI) brain scans between 1991 & 1994.
The study subjects also had
neuropsychological, neurological & medical evaluations between 1998 & 1999 to identify the presence of MCI or dementia.
The overall prevalence of
MCI among the study subjects was 19% (465 of 2,470 people still alive in 1998-99).
The prevalence of MCI increases w/age from 19% in people younger than 75 to 29% in people older than 85.
The study also found MCI was
associated with being black & having low levels of education. MCI was also associated with scores in tests that measure
neuropsychological function, cortical atrophy (shrinkage of part of the brain), MRI-detected
infarcts (tiny areas of brain damage caused by impaired circulation) & depression.
"22% of the participants aged
75 years or older had MCI. Most of the participants w/MCI had comorbid conditions [other health
problems] that may affect their cognitive function," the researchers write.
More information
Here's where you can learn more about dementia.
Robert Preidt
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 |
|
it's in the news....
What is the National Family
Caregiver Support Program (NFCSP)?
The National
Family Caregiver Support Program (NFCSP) is a federally-funded program thru the Older Americans Act. It helps
states provide services to help family caregivers. These services include:
- Information to caregivers
about available services
- Help to caregivers in gaining
access to services
- Supplemental services, on
a limited basis, to complement the care provided by caregivers.
How can I find out about care giving
resources in my community?
There are resources with
staff who can help you figure out whether & what kinds of assistance you & your care receiver may need. The local Area Agency on Aging (AAA) is one of the first resources you should contact when help is needed caring for an older person.
Almost every state has one
or more AAA's, which serve local communities, older residents & their families.
In a few states, the State
Unit or Office on Aging serves as the AAA. Local AAA's are generally listed in the city or county government sections of the
telephone directory under "Aging" or "Social Services."
You can also call the National
Eldercare Locator, a toll-free service funded by the Administration on Aging (AoA), at 800-677-1116.
The Eldercare Locator can
help you find your local or state AAA. Eldercare Locator operators are available Monday through Friday, 9:00 a.m. to 8:00
p.m., Eastern Time. When contacting the Locator, callers should have the address, zip code, & county of residence for
the person needing assistance.
If your family member has
a limited income, he or she may be eligible for AAA services including homemaker home health aide services, transportation,
home-delivered meals, chore & home repair as well as legal assistance.
These government-funded services
are often targeted to those most in need. While there are no income criteria for many services, sometimes you may have more service options if you can pay for private
help.
AAA's can direct you to other
sources of help for older persons with limited incomes such as subsidized housing, food stamps, Supplemental Security Income
& Medicaid. Supportive services for the person needing care can include both in-home & community-based services, such as:
- Personal & in-home care services
- Cleaning & yard work services
- Respite services including adult day care
If you're an employee covered
under the federal Family & Medical Leave Act, if you meet the eligibility requirements, you are entitled to take up to
12 weeks of unpaid leave during any 1 year to care for certain relatives.
What kind of paid help is
available for home health care?
Is there government support for
this? People with low incomes may be eligible for AAA services including homemaker home health aide services &
other services.
Check with your local or state AAA or the Eldercare Locator
service (see resources below).
Government-funded services
are often targeted to those most in need. While there are no income criteria for many services, sometimes you may have more service options if you can pay for private
help.
If you decide to hire a
home care worker, you will need to decide how much help your older relative needs.
- Will several hours
a day be enough?
- Does he or she need help all day until the family returns home?
- Does your relative live alone
& need round the clock care
You also need to decide what type of home care worker your relative needs.
Home care personnel include:
- A Housekeeper or Chore
Worker is supervised by the person hiring them & performs basic household tasks & light cleaning.
- A home health
care worker is supervised by an agency or you & provides personal care, meal planning & household management &
medication reminders.
- A Companion or
Live-In is supervised by an agency or you & provides personal care, light housework, exercise, companionship, & medication
reminders.
- A Home Health Aide, Certified
Nurse Assistant, or Nurses Aide is supervised by an agency's registered nurse. Services include personal care; help with transfers,
walking, & exercise; household services that are essential to health care; & assistance with meds.
-
Nonprofit &
for profit home care agencies recruit, train, & pay the worker. You pay the agency.
- Home health care
agencies focus on the medical aspects of care & provide trained health care personnel, such as nurses & physical therapists.
Medicare may pay for their services.
Who is eligible for Medicare home health care services?
To get Medicare home health care, a person must meet all of these 4
conditions:
- A doctor must decide that the person needs medical care
in the home & make a plan for care at home.
- The person must need at least one of the following: intermittent
(& not full time) skilled nursing care, or physical therapy, or speech language pathology
services; or continue to need occupational therapy.
- The person must be homebound. This means that he or she
is normally unable to leave home. Being homebound means that leaving home is a major effort. When the person leaves home,
it must be infrequent, for a short time, or to get medical care, or to attend religious services.
- The home health agency caring for the person must be approved
by the Medicare program. For more information about Medicare, call 800-MEDICARE or visit the Medicare Web site (www.medicare.gov).
Will Medicaid help pay for home health care?
Medicaid is a joint federal and state program that helps with
medical costs for some people w/low incomes & limited resources. To qualify for Medicaid, you must have a low income &
few savings or other assets.
Medicaid coverage differs from state to state. In all states,
Medicaid pays for basic home health care & medical equipment. Medicaid may pay for homemaker, personal care, & other
services that are not paid for by Medicare. For more information about what Medicaid covers for home health care in your state,
call your state medical assistance office. If you need the telephone number for your state, call 800-MEDICARE.
Valuable Resources
Family
Caregiver Organizations:
Benjamin Rose Institute: Located in Cleveland, Ohio, Benjamin
Rose (BRI) is a non-profit, non-sectarian
health & social service agency that, since 1908, has been regarded as a leader in helping older people age w/dignity.
The mission of Benjamin Rose is to improve the quality of life
for older people, their families, & their caregivers through community-based services & residential care, research,
education, & advocacy throughout Cuyahoga County.
Children of Aging Parents: 800-227-7294
Family Caregiver Alliance: Founded in 1977, Family Caregiver Alliance was the first community-based
nonprofit organization in the country to address the needs of families & friends providing long-term care at home.
History:
More than 20 years ago, a small task force of families
& community leaders in San Francisco came together to create support services for those struggling to care for a loved
one who did not "fit" into traditional health systems:
- Adults with Alzheimer's disease
- Stroke
- Traumatic brain injuries
- Other debilitating cognitive disorders
The diagnoses were all different, but the families shared common
challenges:
- Isolation
- Lack of information
- Few community resources
- Drastic changes in family roles
The Site Reveals:
National Alliance for Caregiving
Some information directly from their website:
What
You Can Do:
Find someone you can talk to, & discuss
your feelings. All feelings are legitimate, even those that upset you (anger sadness, guilt).
Set realistic goals. Balancing work, family,
& time for yourself is difficult. Determine your priorities, & turn to other people for help w/some tasks.
Carve out time for your self, even if it's
just an hour or two. Go to a movie, have lunch w/a friend, or just sit & read a book.
Partners
in Care
As a caregiver, you are an important partner on the health care team. Establishing good relationships w/health
care providers will mean better care for your relative & less stress for you. Health care providers are a good resource
for info about medical conditions. They can also help you & your family member understand his or her current health status
& what to expect in the future.
There are many types of heath care providers, some w/similar sounding titles. Understand
the role of each health care provider & how he or she will help w/your relative's care. Know when & whom to call if
questions or concerns come up.
As questions if you don't understand medical terms or technical
language. Write down medications, treatments, or procedures that are unfamiliar to you.
To make the most of appointments, have written
questions ready for the health care provider.
Ask health care providers to suggest the best
time to call, when they might be free to answer questions. When calling, have important health information & records available.
To avoid miscommunications, select one family
member as the main contact for healthcare providers.
You can help prevent burnout by:
Joining a caregiver support group: Check the
newspaper or local library to locate one in your area. Sharing experiences w/others can help you manage stress, locate resources,
& reduce feelings of isolation.
Talking to a professional: The clergy, social
workers, psychologists, & nurses are often trained to provide counseling on caregiving issues. Help may also be available
through your employee assistance program.
Taking advantage of respite care: Respite
care is a service that provides temporary care for an older person. Respite care may mean help w/a specific task or having
health care providers care for your relative at home or in a extended care facility while you go on vacation.
Recognize signs of Stress
Caring for another person, especially over
a long period of time, can be physically and emotionally draining. You may find yourself feeling listless, forced to do routine
tasks, and wishing to be someplace else. If this sounds familiar, you are a candidate for caregiver burnout.
National Family Caregivers Association
The Center for Family Caregivers
Well Spouse Foundation
Consumer Protection:
Consumer Information Center, U.
S. General Services Administration
Has pamphlets offering various info, including
about federal benefits.
Mail Preference Service
Telephone Preference Service
C/O Direct Marketing Associates
PO Box
9008
Farmingdale, NY 11735-9008
212 768-7277
Will remove consumers' names from mailing
lists & telephone solicitation lists of companies that market nationwide.
NationalConsumer's League
Information about fair labor standards, telemarketing
fraud, health care, food & drug safety, financial services, energy, the environment & telecommunications.
click here to visit the Medications Page that has some interesting results of the National Consumer's League Research.
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Anticipatory Grief
You or your loved one may begin feeling the effects of loss
& grief before a death actually occurs. These are normal reactions to current & future losses. Losses can include
those associated w/caring for someone w/an illness, changes in relationships, & the anticipated loss of a loved one. This
anticipatory grief may actually help you prepare for the losses & decrease the intensity of grief after the death occurs.
Causes of Anticipatory Grief
Some of the causes of anticipatory grief are related to fears
& actual or possible losses, such as:
- Loss of social life
- Loss of companionship
- Loss of usual eating, sleep, work, & recreational habits
- Loss of independence
- Loss of control, such as, being able to care for yourself or
a loved one
- Fears related to life without your loved one
- Fear of losing present family structure, such as head of household,
the family matriarch, or frequency of visits from family members
- Fear of starting over
- Fear of the unknown
Signs & Symptoms of Anticipatory Grief
It is normal to experience recurring or combinations of signs
& symptoms of anticipatory grief. Some of the signs & symptoms of anticipatory grief may include the following:
- Feelings of guilt
- Tearfulness
- Constant changes in emotions
- Anger
- Depression
- Feelings of emotional numbness
- Anxiety or feelings of fear
- Changes in sleeping & eating habits
- Poor concentration
- Forgetfulness or poor memory
- Loneliness
- Denial
- Acceptance
- Fatigue
What You Can Do
There are things you can do which may be helpful for working
through the anticipatory grief process. Some suggestions may include:
- Go for short walks when possible.
- Write in a journal.
- Plan for the future.
- Seek spiritual assistance if needed.
- Talk to someone such as friends, family, or clergy.
- Make changes only as needed but put off major decisions when
possible.
- Do the things you want to do now. Forget the chores that you
can do later.
- Spend time with your loved one, friends, support group &
family.
- Seek help from your family, friends, and/or a hospice volunteer
to arrange some time to spend doing things you enjoy.
- Call your Hospice team if anticipatory grief feels overwhelming
or you want to talk about your feelings.
- Attend a caregiver support group.
Sometimes it may feel that the grief process will not end as
you experience loss.
Emotional & Spiritual Preparation for the End
of Life
Dying is an emotional & spiritual journey. Each person involved
may feel a wide range of emotions. You & the person facing the end of life may experience emotional & spiritual reactions
as you prepare for death. The following feelings are normal reaction & part of that preparation process.
- Asking "Why Me"
- Fear of being alone, of dying, of going to sleep
- Increased desire for physical affection or touch
- Increased desire to have loved ones close by followed by withdrawing
from relationships
- Loss of interest in usual activities
- Feelings of embarrassment about being dependent on others &
being a burden
- Feelings of denial, guilt, or anger about changes, relationships,
or life
- Wanting to talk about the past
- Returning to religious practices or losing faith in religious
beliefs
- Seeing or talking with dead loved ones
- Experiencing spiritual being or phenomenon such as angels,
bright light, visions
There are also many practical considerations which individuals
& their families may face & feel a need to discuss including:
- Fear of not having enough financial resources, both by the
dying person & family members
- Completing wills & estate planning
- Planning for cremation, burial and/or memorial service
- Planning for future care of children, pets, or dependents
It is important to allow each person to talk openly & honestly
about these feelings & issues.
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