(TXT) View source # 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: (HTM) MealTrain - organize meals for someone who needs them (HTM) 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 (HTM) 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. (HTM) 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. (HTM) 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. (HTM) 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. (HTM) AARP 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. (HTM) AARP Caregiving Resource Center (HTM) 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 (HTM) 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. (HTM) 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 (HTM) Interactive Map (HTM) 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 (HTM) detail: https://hazelden.org/store/item/400137?Take-Good-Care LOC: RA645.3 tags: book,non-fiction title: Take Good Care # Tags (DIR) book (DIR) non-fiction