Читать книгу The Family Caregiver's Manual - David Levy - Страница 13
ОглавлениеTo benefit from information, you need to understand why it is needed and how to use it effectively. As a family caregiver, your attitude influences your use of information in a big way.
Whether planning for your own care or the care of someone else, a positive attitude is critical to success. Not believing you can meet the challenges of caregiving is the greatest barrier to effective caregiving. To be an effective family caregiver, you need to put fear and self-doubt aside. Problem solving demands a positive attitude. Believe in yourself as a practical problem solver.
To be an effective family caregiver, you need to put fear and self-doubt aside.
Even effective family caregivers experience doubt or need decision-making reassurance from an uninvolved third party. An objective analysis of a problem and a proposed solution from an understanding, emotionally unengaged third party advisor can be a source of great comfort.
Do Not Overlook Working on Your Attitude
Are you normally a controlling person? You may have to give up some control. Are you afraid of taking control for fear of making mistakes? Learn to overcome fear and take calculated risks. Do you tend to be negative? Work on becoming more positive. Are you depressed and frozen in place? Recognize that being effective depends on a can-do attitude and take steps to overcome your depression.
Being an effective caregiver means accepting help when your can-do attitude is shaky and doubts creep in. Every family caregiver needs support and assistance from others; they need emotional reassurance and guidance for practical problem solving, decision-making, and coping skills.
A positive attitude, combined with practical problem solving, makes a big difference in effective decision-making and attaining positive outcomes.
Good problem solvers are flexible, open to options, and able to try new ideas. They are not discouraged if the first or even second attempt fails.
Are you ready to assess your attitude? Complete the following checklist.
WHAT IS YOUR ATTITUDE ABOUT PRACTICAL PROBLEM SOLVING?
The following ten statements are about attitudes toward problem solving. Which statements do you agree with?
Do you agree with all ten statements? If you do, you are an exceptional family caregiving problem solver.
Do you disagree with more than three of the ten statements? If so, you may need to reevaluate how you solve problems. What does your disagreement with these statements say about your problem-solving skills? How might your negative attitudes affect your family caregiving? If you had more of a “yes” attitude, what barriers to working with others might be resolved? What can you do to make a positive change in your attitude?
Overcoming Guilt and Resentment
Family caregiving is a very stressful experience because of the high emotional attachment involved. Stress and associated depression can often blind people to their own reactions and emotions they do not recognize. Family caregivers experience depression much more frequently than do people who are not caregiving. Studies conducted by the National Alliance for Caregiving have shown that spouses caring for spouses experience depression six times more often than those not caring for someone, and for people caring for parents or anyone else, it’s two times more often.
The greatest roadblocks to effective family caregiving are guilt, anger, and resentment.
The greatest roadblocks to effective family caregiving are guilt, anger, and resentment. You already know that having a positive attitude about yourself is essential to you being a good family caregiver and having the best chance for success. Feeling guilty, angry, or resentful can destroy your positive attitude and your chance to succeed.
Guilt is basically beating yourself up for real or imagined failures in your role of family caregiver. Caregiver guilt can take several forms and family caregivers may experience all of them at once:
Remorsefulness/self-reproach: feeling responsible for wrongdoing, even when what you did worked
Sense of inadequacy: feeling that no matter what you do, you will not do what is needed, and even if you are able to do it, it will not be good enough
Self-criticism: being critical of virtually every task you perform, regardless of whether you performed well or poorly or only believe that you have done so
Feeling you acted contrary to personal conscience: doubting the correctness of your deeds or thoughts
You have a picture of the “Ideal You,” an image of what you should be, that incorporates all your values and perceptions and represents how you relate to yourself and others. Guilt arises when the day-to-day choices the “Real You” has to make, and the choices the “Ideal You” would make do not match. As a family caregiver you have to learn that you are not Mother Teresa and Florence Nightingale. There is no perfect caregiving solution, and “OK” is always good enough! You are not the first caregiver and you certainly will not be the last, and not one family caregiver has been, is, or ever will be perfect. So, do not beat yourself up for not being a perfect caregiver.
Note: A parent caring for a special needs child with a chronic or terminal illness has a special kind of guilt associated with the child being denied a “normal” childhood and the parent not being able to be a “normal” parent. This feeling of guilt is made more intense by the slowly growing realization that a lifetime of family caregiving may lie ahead.
Resentment is beating yourself up for what other people did or did not do. Resentment is a lasting, corrosive emotion that leads to feelings of deep and bitter anger or ill will, resulting from real or imagined wrongs. Feeling resentment is a case where “You swallow poison and hope the other person dies.”
Do not beat yourself up for not being a perfect caregiver.
Resentment comes from unmanaged expectations, that is, when there is a lack of understanding of what may or can happen or promises are made about outcomes that are not met. When treatment or care for Mom does not meet your expectations, resentment can build and become focused anywhere—on hospitals, nurses, home health aides, doctors, insurers, family members, neighbors, or any organization or person who did not do the “more” that would have made Mom’s outcome better. Resentment mounts quickly when your social life, friends, and acquaintances dwindle in the face of the demands of long-term caregiving.
Anger comes from being mad at the System for being so confusing; being mad at friends and neighbors for not understanding what you are going through; and being mad at yourself for not doing “better” when you have no idea what is expected of you. Anger, like resentment, can eat away at your quality of life, well-being, and sanity to the point where the stress it creates is detrimental to your health.
The targets of resentment rarely know about it or couldn’t care less. The System is what it is and not what you want it to be. People are who they are and not who you want them to be. Resentment builds when the System and people fail to meet your expectations. Allowed to fester, resentment can distort any situation’s reality. Resentment is tough, and lonely!
You are the only player in the game and you cannot win.
Guilt and resentment are self-inflicted and are prevalent in family caregiving. For some insight, consider how professionals define family caregiver: Anyone providing or responsible for unpaid emotional, physical, or practical support and assistance for someone’s care needs.
The System is what it is and not what you want it to be. People are who they are and not who you want them to be.
Resentment can grow in a teenage girl because her younger brother is disabled because she has to spend Saturdays taking care of him and cannot go to the movies with friends, and her needs always seems to get lost in the shuffle—and she may feel guilty for feeling that way. A preteen boy can become angry and act out when he is denied the opportunity to play a sport because Mom cannot share in the after-school carpool because she has to take care of his special needs sister. A son in college can feel guilty because he is away from home and cannot help out with his disabled father, and at the same time, resent that the insurance company will not pay for home care. As an adult caregiver, you can resent family members for not seeing or appreciating you performing the thankless task of managing Uncle Ed’s incontinence, personal hygiene, and inappropriate behavior.
Family caregiving is not limited to an age, gender, or particular relationship, nor are anger, guilt, and resentment.
The challenge of providing chronic care is great enough, but when the body is unable to fend off complications the need for care increases and problem-solving solutions that worked before may cease to work. Family caregiving is a dynamic process. Situations can change in a matter of hours. Family caregiving could be described as being dropped into the middle of a foreign country with no knowledge of its language, customs, systems, or structure. Knowing little or nothing, you can barely define your own needs but must engage all of your skills to survive. You must learn to work with a system you know little about in order to care for another human being. On top of that, just when you have begun to understand what to do and how to do it, the problem or the System changes. The survival skills you developed for Problem One are rarely interchangeable for use in solving Problem Two (or Three, Four, or Five).
The prospect of facing daily, problematic sets of ever-varying circumstances with no real wisdom and guidance can cause anyone to become resentful, angry, bitter, and guilt-ridden. These emotions take a deep toll on physical health and well-being and may alienate family, friends, providers, and professionals.
The most broadly accepted family caregiving model is clinically based and depends on acute-care medicine to get people back on their feet, out the hospital door, and back home for long-term, chronic care and lifestyle maintenance (home care). Too often, the patient and the family expect that clinical solutions will resolve all the problems, and medical professionals sometimes foster unreasonable expectations about what medicine can do. However, experience teaches that family caregiving has less to do with clinical issues and more to do with practical problem solving—navigating the clinical and social services bureaucracy (the System), which has little or nothing to do with clinical care. The System is not user-friendly, operates by its own rules, and has a remarkable tendency to minimize input and observations from family caregivers.
The System gives lip service to family-focused delivery but often ignores basic nonclinical needs, such as ascertaining whether an aged stroke victim has anyone to provide care at home, if he or she is sent home on short notice. For example, Dad is a 175-pound stroke victim, and Mom weighs 103 pounds, but no one on the clinical side thinks about the practical issue of how Mom will move Dad out of the bed to the bathroom. This kind of deficiency can cause any family caregiver to feel guilt (at not anticipating such a failure) and resentment (for a System that failed so dramatically to meet the caregiver’s expectations).
To let go of resentment toward the System, you must recognize that the System was never designed for long-term care or to address nonclinical matters. To engage effective long-term care, today’s patient-focused, follow-the-reimbursement model, must change. Until it does, family caregivers are and will continue to be the backbone and front line for long-term care.
Long-term caregiving is not providing “chicken soup and a good magazine.” It is continuous short- and long-term practical problem solving done with little outside support, and its uniqueness makes the problems yours to solve as a family caregiver.
Under such stress, some family caregivers may develop mental health issues and may need individual or group therapy and a mental health professional’s help. However, neither caregiving itself nor the emotional distress associated with the caregiving process is a form of mental illness; family caregiving is difficult, but it is not a “disease.” Mental health therapy cannot address the lack of understanding of the family caregiving process by the caregiver and the inability of a patient-focused clinical system to respond. Therapists can only act on the associated symptoms.
There are solutions to the emotional stresses family caregivers experience, and both caregivers and professionals who support them can assist in providing those solutions.
1. Together we must acknowledge that because family caregivers come in every age, size, and relationship, they have unique personal issues. These issues are both of a practical nature and related to capability, family relationships, and the ability to do the job.
2. Together we must recognize family caregivers for both the job they do and the personal losses they may suffer. As reported in 2011 (June, MetLife Study of Caregiving Costs to Working Caregivers), it is estimated that over a work lifetime, an individual family caregiver can lose upwards of $450,000 due to lack of Social Security and retirement contributions, lost income, unpaid leave days, and missed promotions and salary increases. This lack of appreciation of huge personal sacrifices can build deep resentment within a family and in individuals.
Save yourself distress by keeping the following in mind:
Remember that no one can be objective in an emotional situation. Emotion clouds the issues, resulting in confusion and frustration that the family caregiver then internalizes, giving rise to increasing levels of guilt, anger, and resentment. As a family caregiver, learn to acknowledge your emotions and how they affect your thoughts and actions.
No one can be objective in an emotional situation.
Accept that as a family caregiver, you need help and support. Asking family members to help with simple things may stop you from feeling overwhelmed and lessen your feelings of anger, guilt, and resentment.
Maintain a sense of balance. Keep your social contacts, even if you just meet a friend for lunch or a movie; regular social contact is critical for your own mental health and well-being. No excuses: Having a friend, family member, or paid caregiver stay with Mom for a few hours is perfectly acceptable and necessary.
Don’t confuse your personal self with your family caregiver role. Being a caregiver is not who you are; it is what you do.
Live life and care for yourself physically and emotionally. You also need to create or maintain the emotional, social, and economic wherewithal to sustain yourself across the spectrum of personal aging and your own long-term care issues.
Access real family caregiver support. In a family caregiver support group, as opposed to an educational group, you will learn about clinical needs that have to be met, but more importantly you will find practical support leading to a clearer understanding of nonclinical issues and how to be a better practical problem solver. Remember: 85 percent of all family caregiving is nonclinical. Support groups bring together people with a common role (family caregiving) at different stages and with different illnesses and challenges.
Benefitting from a Support Group
When you join a family caregiver education/support group, you have to know what the group is really about. If the group is not right for you, find another. So, ask questions before joining:
What is being discussed and taught? Is the concentration only on clinical issues (e.g., how to give a bed bath)? Does that kind of information meet your needs? Does the educational content include issues such as how to identify community-based resources, locate additional in-home care, and address your own stresses?
Is support brief or ongoing? Is the program brief (e.g., eight weeks and then you are on your own) or designed to provide ongoing assistance, as your caregiving needs change? Support groups are for the long haul and people come and go. Many of the support groups I have run have been in existence for years, and the variety of experiences make a support group the valuable tool that it is. Many areas of the country have only a few, if any, consistent support groups. Participating using telecommunications tools (e.g., Skype) provided on the Internet can allow you to observe and participate in support groups. Nothing beats being there, but if you cannot attend or a group does not exist near you, watching recordings of actual group meetings is the next best thing.
If the group is not right for you, find another.
Avoid pity parties. When new support group participants first join a group, they may start out with a “woe is me” attitude, but an effective group and facilitator can quickly challenge and change that attitude to one of productive interaction focused on more positive outcomes.
What does the instructor or facilitator offer? Does he or she have shared experience with the group’s caregivers? The best educational and support groups for caregivers are facilitated by people who, while they may have some clinical knowledge, are trained specifically in nonclinical family caregiving support, practical problem solving, and coping skills. The person may be a paid professional or a volunteer, but he or she should have the training to perform at a professional level specific to addressing the needs of caregivers.
Who is in the group? Are you caring for a parent or your spouse, for a child or a friend? The best support group for you, including those offered in the form of limited-time educational groups, will be one that contains at least a few caregivers who share the same relationship you have with the person they are caring for. Better yet, if you are caring for your spouse, find a group that contains only caregivers caring for spouses; if for a parent, a group for adult children caring for their parents; and so on. However, if you cannot find a group that is dedicated in that way, find a group dedicated to family caregivers in general.
After you have participated a few times, did you feel comfortable sharing your emotions and experiences? A true caregiving support group will provide a safe place for you to express grief, anger, guilt, resentment, and frustration—a place where you can interact with other caregivers who are sensitive to emotional and practical issues because they are also caregivers and where you can receive and provide insight and meaningful responses. The group should treat all things said as confidential, and a judgmental attitude has no place in a support group. Whatever you did or are doing is always subject to constructive interaction, but no one can dictate what is right or wrong for you to do!
The Ultimate Solution
Family caregiving is not intuitive, nor do we have access to a system that has figured out family caregiving any better that we as individuals have. We have no “caregiver gene,” and every caregiving situation is unique. Imagine—without the assistance of an experienced family caregiving expert and the support of experienced family caregivers, you and 50 million other caregivers are each reinventing the wheel every day to figure out for yourselves what you need to do. You need more than a list of names and numbers to call or websites to try. You need more than the System saying, essentially, “You figure it out.”
What you need is a plan, and building a plan that works for you is what the rest of this manual is about.
