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# 2024-02-12 - Take Good Care by Cynthia Orange
I checked this book out from the library. My intent was to learn
about avoiding caregiver burnout. This book spends a lot of time
discussing codependency and psychological considerations. It
gives many anecdotes to illustrate concepts and situations. It
also gives valuable gems and tips for dealing with emotional,
logistical, and organizational challenges. But it's not all
challenges. The book also goes into detail on the rewards of
caregiving. I enjoyed reading that.
# Introduction
Healthy caregiving is the balanced act of reaching out to others with
an open heart and helping hand that connects us to the better parts
of ourselves as we connect to those in need and to the community that
surrounds them. Approached realistically--with intention, support,
and a good mixture of patience, humor, and flexibility--it can be a
time of joy and discovery and a chance to practice important life
skills that prove valuable in a variety of situations. Compassionate
caregiving is also an opportunity to engage in service work as we
make or deepen more honest, open, and balanced relationships.
As a writer, I know how easy it is to get hung up on words, labels,
and definitions--especially when it comes to sometimes loaded [and
overloaded] or complex terms like codependent or caretaker (as
opposed to caregiver). [Caretaker could also be a job title for
someone who manages a property.]
To get the most out of this book, I think it's important to make sure
we're speaking the same language, so I want to explain how the words
codependency and caretaker will be used in these pages.
To put it simply, I would describe codependency, as the word is
commonly used today, as the out-of-balance behavior of someone who is
overinvolved in another person's life. Melody Beattie is credited
for popularizing the term in her 1986 best-selling book Codependent
No More, in which she describes codependents as people who become so
obsessed with other people's feelings and behaviors that they--in an
effort to control or fix them--lose sight of their own feelings and
actions.
Caretakers often have a tendency to swoop in and take charge, take
over, or take control of a situation or person in an effort to fix a
situation or even a person--often without being asked or without even
realizing they're doing it.
I think it helps to think of caretaking as the out-of-balance and
"self-centered" behaviors that reflect a person's deep need to be in
control and be accepted. On the other hand, caregiving consists of
more balanced behaviors that reflect compassion and concern for
others.
# Chapter 1: A Closer Look at Caretaking
... it is up to each of us to figure out for ourselves if or when
caring for others is consuming us or feeding us.
This chapter is about identifying those [caretaking] behaviors when
they arise.
This process of identification is an exercise in self-awareness.
Understanding what makes us tick and why we do what we do... is an
important step in accepting [or assuming] responsibility for our
actions. Owning our actions and reactions helps us decide which ones
warrant attention--which ones we may want to try to change, curb,
limit, or forgive.
As I have said, it is often necessary for those who care for someone
who is seriously ill or disabled to become more caretaker than
caregiver, and we'll talk more about those particular situations in
later chapters. But I think anyone who lends a helping hand can
benefit from gaining a better understanding of their own motives,
actions, and reactions when it comes to giving care. More
importantly, I think it is extremely helpful for all of us to know
our individual limitations--when caring for someone is swallowing us
up to the point where we are risking our own health and well-being.
Caretakers often live in an "If I can do or say this, then this will
happen" world of expectation, which more often than not results in
disappointment and even anger. As they say in Twelve Step circles,
an expectation is a premeditated resentment.
Healthy caregiving isn't about letting go of all expectations; it's
about sorting out reasonable expectations from unreasonable ones.
Unmet expectations can leave us feeling disappointed and unhappy.
Now when I feel disappointment... it's usually a clue that my
expectations might be unrealistic and out of alignment with the
present reality. It's also a clue that I may be caretaking.
Beattie and a host of other experts who have written about
codependency and caretaking often talk about a caretaker's tendency
to "rescue" instead of being truly helpful. Some experts use the
more therapeutic term, describing this habit as "enabling" because it
encourages or allows (enables) the care receiver to remain stuck or
become helpless and even more dependent on the caretaker.
Too often, caretakers live in an "assumptive" world--they assume they
know best; they assume they know if someone is in need of help
without checking it out or asking if help is wanted; they assume they
know how someone feels, how they will act, or react.
No matter how old or how set in our ways we may think we are, there
is always room for change and growth.
# Chapter 2: Family and Cultural Messages and Expectations About
# Caregiving
For many of us, the messages we've gotten over the years about
caregiving and kindness have been mixed, delivered in a "do as I say,
not as I do" way that left us doubting the sincerity of the messenger
or the value of the lesson.
However we define family, each one has its own dynamics--their unique
patterns of relating to each other.
Our definition of family can change as our circumstances change.
Part of rebuilding our lives when significant changes occur is
deciding whom we want to embrace as family.
Caregiving in today's world differs dramatically from the caretaking
in years past. For one thing we're living longer and moving more.
Women's roles changed dramatically.
Although the times have indeed changed, many expectations have not...
... many studies have shown that nonwhite caregivers consider
caregiving to be less burdensome than white caregivers do, despite
the fact that the nonwhite caregiver typically has less income,
provides greater amounts of care, and uses fewer professional
services.
While interdependence and support are common in many communities of
color, Western Europeans and white ethnic groups appear to place a
high value on independence and self-reliance, sometimes making it
more stressful to give and accept care.
Studies also reveal that differences and challenges exist for
caregivers in rural areas.
Many LGBT adults also experience caregiving challenges in their older
years. ... many of the supports in place for the aging in America do
not cater to the special needs of LGBT seniors.
Since so many expectations naturally exist in the families and
cultures we are born into, I want to spend the rest of this chapter
exploring how to deal with the resulting unreasonable expectations
that we carry into our lives as independent adults and what to do
with the resentments that often follow.
The first step in letting go of unreasonable expectations is learning
how to detect the ones that could lead to disappointment or
resentment.
Whether I think or say them, I find that words like "always," or
"never," or "if only," or all the variants of "should," like "must"
or "ought to" or "supposed to," are clues that I'm on my way to
forming an unreasonable expectation.
According to many behavioral psychologists, another way to sort out
which expectations are realistic and which aren't is to ask if the
expectation is helpful or serves us in some way. Unreasonable
expectations are usually pretty rigid. While we might not be
successful in letting go of them entirely, perhaps we can be more
flexible and reframe them or let go of a piece of them.
How do you think it would feel to be more curious and open yourself
to possibilities instead of having preconceived notions of what
should or should not be?
In Latin, the word resent means "to feel again." Resentment is
unresolved anger that can slow our progress from caretaker to
caregiver.
One way to get resentments out of our heads is to write them down.
Those in Twelve Step groups would call this doing an "inventory," an
exercise that can benefit everyone--not just those in recovery from
addiction.
Anger is a normal, often useful emotion that can motivate us to make
necessary changes. It's holding onto anger until it turns into
resentment that can make us miserable.
When we do a resentment inventory, we write down a list of people we
resent and describe what happened and how we feel about it. Then it
is useful to write down how holding onto the resentment is harming
us. Is it keeping us from trusting? Is it causing rage or sadness
or depression? Is it affecting our self-esteem, our ambition, or our
other relationships?
The last step in this process is to brainstorm ways we might lessen
or let go of each resentment.
Someone wrote that forgiveness is giving up the idea that we could
have had a different past. When we lessen the grip we have on
resentment--and the stranglehold it has on us--we pave the way to the
sort of forgiveness that frees us to live life more fully in the
present moment.
# Chapter 3: Balance and Boundaries
The way we relate to others has a lot to do with the kinds of
boundaries we establish and maintain with them. A boundary is an
invisible line that separates what we are responsible for from what
they are responsible for. Appropriate boundaries can protect and
preserve our individuality and help keep our self-esteem intact.
Unfortunately boundaries are often the first things to go when it
comes to giving or receiving care.
Salvador Minuchin, a pioneer in the field of structural family
therapy, was one of the first to describe a family with no boundaries
or blurred boundaries as an "enmeshed" family system. He called
families with rigid boundaries "disengaged."
Minuchin wrote that we travel on a continuum from disengagement to
enmeshment that looks like this:
=== disengaged ---/--- clear boundaries - - -/- - - enmeshed ...
Simply put, when we set boundaries, we set limits.
Physical boundaries have to do with personal space, privacy, and
bodies. Unless we are pulling someone out of harm's way or rescuing
their belongings from a fire, we don't have the right to touch other
people or their things without their permission, just as they don't
have the right to touch us or our things without our permission.
Those who practice good boundary setting don't assume someone--adult
or child--is comfortable hugging, for example.
Another way to honor someone's physical boundaries is to respect
their privacy by not dropping by unexpectedly at their home, their
workplace, or their hospital room without contacting them or their
caregiver first.
Emotional boundaries separate our emotions (and responsibility for
them) from another person's. When we maintain appropriate emotional
boundaries, we learn to put the brakes on before we offer advice,
blame someone for our actions or reactions, or accept the blame for
their actions or reactions.
When we practice good emotional boundaries, we get more in tune with
which interactions are helpful and which might be hurtful. We can
step back and accept the feelings of others without thinking we need
to fix them or solve their problems. And we get better at accepting
our own feelings without thinking something is wrong with us that
needs to be fixed.
We also get better at knowing when and whether intimacy is
appropriate--when it's OK to confide or share personal feelings or
expressions and when or whether it feels appropriate for someone else
to be sharing theirs with us.
## Could You Just Listen?
> When I ask you to listen to me, and you start giving me advice, you
> have not done what I asked.
>
> When I ask you to listen to me, and you begin to tell me why I
> shouldn't feel that way, I feel like you are ignoring my feelings.
>
> When I ask you to listen to me, and you feel you have to do
> something to solve my problem, I often get more confused, strange
> as that may seem.
>
> All I ask is that you listen, not talk or do--just hear me.
>
> When you accept as a simple fact that I do feel what I feel, no
> matter how irrational, then I can quit trying to convince you and
> can get about the business of understanding what's behind this
> feeling.
>
> So, please listen and just hear me.
>
> And if you want to talk, wait a minute for your turn--and I'll
> listen to you.
>
> -- Author Unknown
Mental boundaries have to do with how we and others see the
world--how we think about things like politics, the environment,
career choices, child rearing, education, family, friendships, and
caregiving. ... caregivers ... try not to interfere with someone's
plan of action, whether that plan has to do with health concerns or
home improvements--even though they may strongly disagree.
When we practice healthy spiritual boundaries, we accept that there
are many paths to a source of higher being or purpose. When we are
being our best caregiver selves... we realize it is not our job to
foist our beliefs on them or challenge theirs, any more than we would
want them to force theirs on us.
Setting boundaries is about acknowledging limits, not building walls.
The goal is to gain enough sense of self and of others that we can
get comfortably close to other people without disappearing in their
shadows or taking over their lives.
To begin with, it is important to try to set boundaries when the air
is calm and clear--when we aren't tired, angry, hurt, resentful, or
in the midst of a crisis.
Determining how great or immediate a need is can help us decide if or
how much help is called for and how much we are willing to invest in
helping. Is this a onetime favor? Will this person require ongoing
care on a daily, weekly, or monthly basis? Are there others who will
also be involved in helping this person? Unless it is a true
emergency, taking time to objectively evaluate a situation before
rushing forward to offer our help is an important step in boundary
setting.
At those times when we have the luxury of choosing to offer a helping
hand... it's important that we do so with intention and
self-awareness. Here again, it helps to pause and take time to do
some honest self-reflection before volunteering our time and services.
If your desire to help has more to do with your needs than the other
person's, the care relationship risks getting out of balance, and
then boundaries can quickly get blurred.
Before we take on a caring responsibility--no matter how big or how
little--it's important to have a good idea of what other areas of our
lives will be affected. It is common for caregivers to overcommit to
others and undercommit to themselves.
When caregivers feel especially fragile--when they're low on energy
and high on emotions, feeling anxious and overwhelmed or ready to cry
or explode--it's a good clue they need to set or adjust a boundary.
# Chapter 4: The Circle of Care
I like Foer's comparison of caring to a muscle that gets stronger
with exercise. Self-awareness, boundary keeping, and the other
elements of caregiving all take practice. When we exercise our
caring muscles, we're also practicing how to connect to others in
healthier and more fulfilling ways. This circle of connection can
expand and strengthen relationships and build a community that we
might want to call on when we need care ourselves.
Finding our appropriate place in someone's circle (or net) of care
and figuring out whom we would want in our own circle when we might
need a helping hand is another way to establish and negotiate
boundaries.
One way to do this is to use what psychologist Susan Silk calls the
Ring Theory. Although the idea of using concentric circles to
illustrate degrees of connection is not a new idea or unique to
caregiving, I like how Silk explains hers.
## Circle of Care
0 - Care receiver
1 - Primary caregivers (those closest)
2 - Close friends and family
3 - Significant helpers
4 - Neighbors, colleagues, club members
5 - Acquaintances, Internet support groups
6 - Others, community volunteers, social media
Silk and Goldman say that when you are talking to a person in a ring
smaller than yours (someone closer to the center), the goal is to
help.
> Listening is often more helpful than talking. But if you're going
> to open your mouth, ask yourself if what you are about to say is
> likely to provide comfort and support. If it isn't, don't say it.
As Silk and Goldman put it, "Comfort in, dump out."
It takes practice and patience to become a "listening presence," but
it is one of the most valuable skills a caregiver can have. If we
learn to listen attentively, we often tune in to what people really
need and want to talk about.
Attentive listening is a way to let someone know we think what they
are saying is important enough to warrant our complete attention...
Active listening is a skill that comes in handy any time, but it is
especially useful in caregiving situations.
Tips:
* When someone seems to have something they need to talk about, try
giving them your full attention by focusing on them and what they
are saying. Turn off the television, the radio, and your computer,
and turn toward the speaker so you can observe their body language.
Be honest about your time. If you are in the middle of something
that cannot be interrupted, apologize and schedule a time when you
can give them your full attention and focus.
* Listening isn't only done with the ears; our body language,
posture, and even level of attentiveness all say something about
our interest and concern. Show you are listening by asking for
clarification when needed, by making eye contact, and by adding an
occasional "uh huh" or "I see," or by nodding your head.
* Show that you understand by occasionally restating (paraphrasing)
what the other person has said by asking things like "Are you
saying such and such or saying, "What I heard you say is..."
* Try to listen without judgment and resist the urge to interject
your opinion. Be aware of your personal triggers or
filters--things that, because of your own experiences or history,
might cause you to react with horror, anger, or fear.
If a powerful emotion arises that distracts you momentarily, it's
okay to apologize by saying something like "I'm sorry. That part
of your story struck an emotional chord for me that took me away
for a second. Could you repeat your last sentence? I really want
to hear what you have to say." Be honest if you need a break by
saying something like "I'm really glad you're telling me about your
experience, but this is hard for both of us [or for me too], and
I'm feeling a bit overwhelmed. Could we do this again tomorrow?"
* Resist saying, "I know how you feel."
* Make room for silence, and give the speaker time to gather their
thoughts. It's fine to ask if they're done speaking before you
respond.
* Resist the temptation to give advice.
* Validate the speaker's feelings by saying something like "That must
have been difficult," or "That sounds really frightening."
* Finally, it's important to know when to back off. Pay attention to
their body language as well as their words. If they seem agitated
or emotionally overwhelmed, check in with them by asking how
they're doing or if they want to take a break.
The overall point of this discussion is for caregivers to remember
that when someone is in need of care, THEY get to occupy the center
circle. What's going on is about them, not us... Like most things
that have to do with caregiving, these aren't rigid rules. Much of
the art of caregiving is about paying close attention to the cues a
care receive gives. As we flex our caregiving muscles, we get more
adept at reading these cues.
When it comes to giving care, two of the toughest questions people in
need of help or support often get are "How can I help?" or "Is there
anything I can do?"
A list can break down something big like "I NEED HELP" into
manageable parts by identifying what we might need, what we are able
to do ourselves, and what we might need help doing. Making such a
list before a crisis hits can save time, headaches, and even
heartache because we have tasks, names of people, and numbers at our
fingertips when they're needed.
I encourage you to make your own list. For example, list whom would
you most likely call:
* to fix your washer, dryer, or some other appliance
* for an electrical problem
* for automobile maintenance, repair, or advice
* for lawn maintenance
* to help with a house project
* for a computer or Internet problem
* for telephone repair
This list doesn't have to pertain to house or car maintenance. For
example, you may want to list the person or people you would call:
* in a health care emergency
* for financial or legal help
* to discuss a personal problem
* for emergency child care if you have young children
* for spiritual comfort or advice
* for a ride if your car broke down
* if you had an accident (e.g. insurance company, auto club, friend,
or family member)
* for meals if you were injured or ill or overwhelmed with caregiving
duties
* for a movie, a walk, a night out, or other fun activity
* to sit with a loved one if you were the primary caregiver and
needed a break
* to pet-sit if you are suddenly called out of town
* for a long talk or a good laugh
What would you add to this list? Whom would you add? When you
brainstorm your list, be sure to add names, emails, and phone
numbers, and try to update the list and the contact info when things
change, including backup names and numbers whenever you think of
them. Your list could even include things like the exact location of
the circuit breaker, gas and water shut-offs, modem, tools, and other
details that would make it easier for a person to help without having
to ask fifty questions.
Once you've completed your list of the people you might call for help
when you might need it and filled in your own circle of care, think
again about what kind of things--emotional support, task-oriented
help, and so on--you see yourself giving to others.
We discover that, as caregivers, we are a part of a vast network of
kindness and caring.
# Chapter 5: Cultivating Compassion
To paraphrase research professor and best-selling author Brené Brown,
better boundaries make room for more compassion. Compassion is at
the heart of caregiving and comes from a Latin word that means "to
suffer with." To me, compassion is a generous word that describes a
quality that allows people to tend to the needs of another while
suspending their need to control, fix, or manipulate.
The word empathy comes from a Greek word that means "in feeling" or
"feeling into."
To me, being "in feeling" means feeling with someone.
... I could not genuinely care for and support my husband if I was
not taking good care of myself.
In an article titled "What Is Empathy?" experts at the University of
California Berkeley's Greater Good Science Center explain the
difference between "affective empathy" (sometimes called "emotional
empathy") and "cognitive empathy." According to them, affective
empathy relates to the feelings we have in reaction to other people's
emotions. They write that "this can include mirroring what that
person is feeling, or just feeling stressed when we detect another's
fear or anxiety." They state that cognitive empathy, which is
sometimes called "perspective taking," is about our ability to
identify and understand people's emotions.
But I also believe that even if we do have the capacity to empathize,
t also takes self-awareness and practice to fine-tune our empathetic
natures--especially when it comes to caregiving. In fact, doing
favors, volunteering, caring for and about others, and just plain
being kind are all ways to practice empathy and strengthen our
ability to empathize.
Recent studies also show how our own emotions can affect our capacity
to empathize with another person. ... This is a good reason for
caregivers to check in with themselves to make sure they are able to
be truly present with someone who is in need of a shoulder or a
listening ear. This checking-in process is often called "emptying
your cup."
The idea of emptying your cup is often linked to the Buddhist story
about the Zen master and the scholar who came to the great teacher
full of enthusiasm and ideas, eager to impress him with all that he
had learned about Zen already--all the places he had studied and the
knowledge he had gained along the way. As he rambled, the master
poured tea into the student's cup. As he talked and talked, the
master poured and poured, until the student shouted in alarm, "Stop!
The cup is already full!" To which the master replied, "You are like
this cup. You come to learn, but make no room for anything else
because your cup is already too full. Before you can hear, before
you can learn, you must empty your cup."
I consider emptying our cups an important element of caregiving.
We can practice empathy by emptying our own cup, slowing down, and
paying close attention to what someone is saying and how they are
saying it. Being mindful in this way can help lessen the
distractions that might interfere with our ability to be fully
present with another person. We can talk less and listen more,
trying our best to suspend judgment, not rushing to conclusions or
diminishing someone's experience by treating it too lightly. We can
try our best not to offer pat advice or empty consolations like "at
least you're alive..."
While empathy is feeling and being with, I view compassion as the
next step--the reaching out and doing.
As I understand it, compassion encompasses empathy but can include
doing as well as being. In other words, we can be empathetic and
compassionate at the same time.
Unlike pity, which usually describes a "one up/one down" response
(e.g. "I feel so bad for the starving children in Ethiopia"), to me
an expression of sympathy is an acknowledgment that you realize that
someone is going through a difficult time.
# Chapter 6: Joys, Challenges, and the Importance of Caring For
# Ourselves as We Care For Others
The paradox of choosing to practice what I describe as "empathetic
compassion" in the preceding chapter is that such an act has the
potential to fill you up both emotionally and physically or suck you
dry.
It's true that without safeguards or appropriate assistance in place,
caring for others can take a serious toll. Yet recent studies show
that--generally speaking--helping others has numerous benefits.
To me, caregiving:
* is an opportunity to practice empathy and compassion
* is a chance to redefine, improve, and evolve relationships, making
them more honest, open, and deeper
* is an opportunity to exercise and rediscover the better parts of
ourselves
* is a chance to practice flexibility
* offers the freedom to change lifestyles, perceptions, expectations,
judgments, etc.
* is an opportunity to practice life skills like living sanely and
serenely
* is an opportunity to give back
* is a chance to practice and appreciate the present moment
* is a way to get us "out of our own heads"--lessening worry and
depression
* if we're in a Twelve Step program, is a chance to practice the 12th
step--the "service step"
* is a chance to develop new and more intimate connections
* provides a chance to improve communication skills
* offers the opportunity to expand or discover community (e.g. mutual
caregivers, others in the same situation, the community surrounding
the person for whom we are helping)
* is a chance to practice reaching out, asking for, and accepting help
* is a possible time of rediscovery/recovery/reconnection
* is an opportunity to practice "delegation" skills
* is an opportunity to use teachable moments with kids
* can help us hone or lean practical skills (e.g. cooking, home
repair, navigating a computer or smartphone)
* is a way to put our values in action
* is a way to expand our own caring circle for times when we might
need help
* is an opportunity to connect with and learn from individuals of
different ages, ethnicities, cultures, beliefs, and experiences
If caring responses to ordinary life events can get to a point where
we are affected both emotionally and physically, imagine the toll
that caring for someone with a serious or ongoing care need can take
on a primary caregiver. While healthy and balanced caregiving can
lengthen our lives and improve our health, primary caregivers in
difficult and challenging circumstances face serious threats to their
health and well-being. Research shows that overwhelmed caregivers
have a greater chance of dying sooner than their non-caregiving peers.
Caregivers who experience a number of the following signs and
symptoms risk stress overload:
## Cognitive Symptoms
* memory problems
* inability to concentrate
* poor judgment
* seeing only the negative
* anxiety or racing thoughts
* constant worrying
## Emotional Symptoms
* Moodiness
* Irritability or short temper
* Agitation or inability to relax
* Feeling overwhelmed
* Sense of loneliness or isolation
* General unhappiness
## Physical Symptoms
* Aches and pains
* Diarrhea or constipation
* Nausea, dizziness
* Chest pain, rapid heartbeat
* Frequent colds
## Behavioral Symptoms
* Eating too much or too little
* Sleeping too much or too little
* Isolating yourself from others
* Using alcohol, cigarettes, or drugs to relax
* Nervous habits like nail biting
The longer we ignore stress symptoms, the more serious they can
become. If you are consistently experiencing a number of the above
symptoms, it might be a good idea to consult a qualified medical
professional... As we'll see, asking for and accepting help is an
important element of self-care.
I believe that self-compassion begets self-care. Kristin Neff, a
psychology professor and well-known expert on the subject, describes
self-compassion as "giving ourselves the same kindness and care we'd
give a good friend."
Neff stresses that self-compassion is NOT the same as self-esteem,
which is about our feelings of self-worth.
If you made a list of all the things you intend to do today, would
anything having to do with self-care be on it?
Sometimes the process [of asking for help] is easier if we can break
it down. First, it helps to be clear about the need or problem.
Next, it helps to identify who can most appropriately give you the
help you need. The last step is to actually ask for the help you
need. It helps to be as clear and specific in your request as you
can be and, if possible, estimate the amount of time you think such a
favor may require. If someone is unable to help you, try your best
to accept their answer at face value. Thank that person and ask
[someone else] or ask if they have an idea of whom else you might
contact.
Without healthy boundaries and good self-care, overburdened
caregivers are at risk for compassion fatigue, which is just what it
sounds like.
# Chapter 7: Preparing For The Unexpected
... the longer we live, the more curve balls life seems to throw us.
When caregiving chooses us, it's more important than ever to have our
"caring house" in order, to have our list of resources as well as our
circle of care in place, to sharpen our empathy and listening skills
when we can, and to regularly practice the elements of self-care
we've discussed...
Caring tools are like car or home emergency kits.
## In Case of Emergency (ICE) Card
Medical emergency info for:
[Name, Address, Home number, Cell number]
Emergency contacts:
[Names, Relationships, Home numbers, Cell numbers]
Insurance information:
[Company, Phone number, Note that says "cards in wallet"]
Primary physician:
[Name, Phone number]
Medical conditions:
[Ongoing medical problems]
Blood type:
Allergies:
Medications:
[Share cards with each other. Primary caregivers may carry a copy of
the care receiver's card.]
Keeping track of medications, appointments, and bills, as well as
wading through tons of information about test results, diagnoses,
treatment plans, surgery options and dates, and the like can be an
exhausting and overwhelming aspect of caregiving.
Suggestion:
Get a 3-ring binder for note taking, gathering questions for various
providers, and keeping a lit of test results over time... Use tabs.
Include a section for Thank Yous. Include a separate section for
things that bring the care receiver pleasure or joy.
Scan information and put it on a flash drive including living will,
provider order of life sustaining treatment, meds list and doses,
copy of driver's license, copy of front and back of medical insurance
card, insurance claim numbers, list of all doctors and their contact
information. Make sub-folders for email correspondence. Include a
password file.
Useful sites:
MealTrain - organize meals for someone who needs them
CaringBridge - share health updates with family and friends
I think one of the most dramatic relationship balancing acts takes
place when adult children become caregivers for their parents or
other older adults. It can get complex and confusing when we find
ourselves in a situation where someone who took care of us for a good
portion of our lives now has to rely on us to help them with so many
aspects of their own lives.
This can get a little awkward when we, as adults, end up assisting a
parent or other older adult with personal things like dressing,
bathing, or going to the bathroom. Things like helping them manage
their finances, having uncomfortable conversations about medical
issues, or expressing our concerns about their ability to drive or
live independently can be difficult as well.
... lots of caregivers benefit from the support they receive in a
caregivers' group. ... If you cannot find a caregiver group in your
area, check the Internet for online support groups.
# Chapter 8: The Special Challenges of Brain Disorders and Dealing With
# Anticipatory Loss
While dementia is classified as a group of symptoms that can affect
our memory or ability to reason, Alzheimer's is classified as a
progressive disease that can cause dementia.
I also learned from the time I spent with my memory-impaired friend
how absolutely critical it is to also support and help the primary
caregiver in these types of situations. They are often exhausted and
overwhelmed trying to keep it all (and themselves) together as they
try to adjust to this new reality while grieving the way things used
to be.
Caregivers--both primary and secondary--often struggle with how to
best navigate this new way of being with the least amount of
frustration and the greatest amount of respect. I think of it as
being lost in the "bewilderness."
# Resources
Family Caregiver Alliance (FCA)
1-800-445-8106
In addition to an extensive library of fact sheets, articles,
checklists, webinars, and videos on caregiving issues, FCA offers a
state-by-state Family Care Navigator at its website to help family
caregivers locate public, nonprofit, and private programs and
services nearest their loved one--living at home or in a residential
facility. Resources include government health and disability
programs, legal resources, disease-specific organizations, and more.
Caregiver Action Network
Caregiver Action Network provides education, peer support, accessible
tools, and resources to assist caregivers in managing the care of
their loved ones.
National Alliance for Caregiving (NAC)
NAC is a nonprofit coalition of national organizations that focus on
advancing family caregiving through research, innovation, and
advocacy. It develops national best-practice programs and works to
increase public awareness of family caregiving issues.
Rosalynn Carter Institute for Caregiving
The overall goal of the Rosalynn Carter Institute for Caregiving is
to support caregivers--both family and professional--through efforts
of advocacy, education, research, and service.
AARP is a nonprofit, nonpartisan organization with a membership of
nearly 38 million that deals with issues that matter most to
families--such as health care, employment, and income security, and
protection from financial abuse. AARP's Caregiving Resource Center
offers up-to-date, expert advice and resources on caregiving issues
and concerns.
U.S.Administration on Aging Eldercare Locator
This is an easy-to-use, free public service that can connect
caregivers to services for older adults and their families in their
area. Caregivers simply put in their zip code and select the kind of
services they are looking for on the drop-down menu. You can also
call 1-800-677-1116
Medicare Caregiver Resource Kit
This section of the "Ask Medicare" tool kit offers informational
resources that can be printed directly from the website and provided
to caregivers. The resources are designed to help caregivers address
challenging issues and work effectively with Medicare to ensure their
family members and friends receive the best possible care.
Alzheimer's Association
Formed in 1980, the Alzheimer's Association is the world's leading
voluntary health organization in Alzheimer's care, support, and
research. It provides an easy-to-use interactive map to help
caregivers find support and services in their area. It also provides
a 24/7 help line phone number as 1-800-272-3900
Interactive Map
U.S. Department of Health and Human Services Caregiver Resources
Caregivers can find links to a vast amount of information regarding
caregiver resources and information on long-term care at this
website.
author: Orange, Cynthia
detail: https://hazelden.org/store/item/400137?Take-Good-Care
LOC: RA645.3
tags: book,non-fiction
title: Take Good Care
# Tags
book
non-fiction
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