Читать книгу The Family Caregiver's Manual - David Levy - Страница 11
ОглавлениеPast and recent experience has taught us that the family is the primary source of all nonclinical family caregiving. It is also increasingly clear that insurance plans and government programs will never be sufficiently funded, staffed, or motivated to meet all the needs of people who are frail, disabled, or chronically ill, regardless of their ages or the nature of their care.
There is no magic bullet that can make family caregiving easy, but there are practical steps you can take that will make the burden more manageable for you and other caregivers in your family. Therefore, as you work through this manual, you will find explanations of what to do to make family caregiving easier today and going forward.
The American Society on Aging defines a family caregiver as “a person who cares for family—loved ones’ elderly or frail; anyone with a physical or mental disability.” Other sources refer to “unpaid caregivers” or “informal caregivers.” Everyone knows the broadly defined role of the family caregiver, but the role of the individual family caregiver is unique and not so easy to define.
Family: Can it be defined only as a group of people related by blood or marriage? Many people have no blood relatives, no spouse, no siblings, no child—no family in the traditional sense. However, life structures today include partners, significant others, and close friends who are included in the term “loved ones.” Many of us depend solely on friends or neighbors to be our real family. The bonds of many kinds of relationships now define what family relationships are, and these newly defined families, along with blood-related families, are today’s family caregivers.
Roles of family vary. Caregiving is both a tool and a process. Family caregiving is a tool for providing clinical, rehabilitative, personal, and nonclinical care in home-based locations (home care) to reduce financial burdens on formal healthcare systems. Access to home care provides the clinical care system with a means for people residing in their own homes to receive clinical care, but unpaid family caregivers are the means for providing all social, emotional, practical, and other nonclinical care a person needs to achieve well-being.
No two family caregiving situations are alike, and there is no one formula for creating the perfect caregiving situation.
Clinical care standards are predictable; what happens in family caregiving is unique and unpredictable. Just as fingerprints differ on each finger and are different from anyone else’s, family caregiver “fingerprints” distinguish each care situation from any other. Each family caregiver brings different skills, emotions, attitudes, and problem solving capabilities. Add age, culture, religion, finances, upbringing, family dynamics, and other factors, and it becomes clear that no family caregiving situation could ever be identical. From family to family it may look the same, but no two family caregiving situations are alike, and there is no one formula for creating the perfect caregiving situation.
You are a family caregiver if you
currently provide any level of health, financial, or social assistance in meeting the needs of a family member or friend;
anticipate being the key person providing assistance or support when someone who is currently managing independently needs assistance or support;
help someone else by providing care needed by that person’s family or friend;
provide care to someone with special needs who will never be able to fully provide for his or her own independent lifestyle.
You are a primary caregiver if you are directly dealing with the care needs of another or are responsible for implementing and guiding the daily care performed by paid or volunteer services.
You are the alpha caregiver if you are the one making the final decisions, regardless of who does the daily care. You can be both a primary and an alpha caregiver.
You may be a local or a long-distance caregiver, depending on the physical distance or practical barriers separating you from your loved one.
Local caregivers live with or close to the person needing care and have personal, day-to-day knowledge of the situation. Local caregivers can visit frequently, if they do not live in the home itself, and directly observe the work of paid caregivers and others who come into the home.
Long-distance caregivers do not live close to the person needing care, or there may be other barriers between the caregiver and the person needing care, such as a contentious family relationship.
Long-distance caregivers face unique challenges because they do not know first-hand and day-to-day what their loved ones are experiencing. They may be alpha caregivers and tasked with making all the decisions, and at the same time, although they rarely see the person needing care, they may be the only primary caregivers available. They must depend on what their loved ones tell them (which may not be reliable), information from agencies they work with over the phone, and paid caregivers or other people they never see face-to-face. When they have the opportunity to visit their loved ones, they sometimes find that information provided is incomplete or inaccurate. Loved ones needing care often hold back critical information. Paid caregivers and agency personnel may not recognize the degree of change in a loved one’s condition or see through the camouflage the person needing care creates to protect his or her dignity and independence. The accuracy of information provided is also dependent on how qualified and professional paid caregivers are; limited skills and interest on the part of paid caregivers can mean that reports on a loved one’s well-being are inaccurate and care is inadequate. Dependence on possibly inaccurate information means long-distance caregivers experience a higher degree of anxiety and stress than that experienced by local caregivers who can see for themselves.
Regardless of distance, it is always stressful for family caregivers to meet the challenge of ensuring that services are delivered as required.
Regardless of distance, it is always stressful for family caregivers to meet the challenge of ensuring that services are delivered as required and that care providers offer quality care. For long-distance caregivers, meeting that challenge can be daunting, and that creates a unique caregiver burden.
Family Caregivers Are Jugglers
All family caregivers juggle to find space in busy lives for family caregiving, and the more complex the caregiving situation, the more they have to juggle. For example, many belong to what professionals have labeled the “sandwich generation”; they are caring for aging parents and healthy children at the same time. There are also children who are caregivers, who actually provide hands-on care for siblings, parents, and other relatives at home and struggle to meet the demands of school and simply growing up, in spite of disruptions at home. Family caregivers are of all ages, and because of generational differences in personal, social, work, and familial demands, they have different perceptions of caregiving that influence their approach to caregiving and their expectations of its complexities. They also differ in how caregiving stress affects them.
It is possible to effectively coordinate family caregiving with a busy life. Even if you are already caregiving, it is never too late to try new tactics. If you are not caregiving now but see it coming, it is never too early to start getting organized.
The more you learn about what your particular caregiving job will involve, the resources needed to provide care, gaps in resources that require you to adapt your plans, and the kinds of changes that can occur while you provide care, the better able you will be to modify the steps you take so the needs of your loved one are met.
Checklist
DEFINING YOURSELF AS A FAMILY CAREGIVER
What you do for another person who needs care defines you as being a family caregiver. Review the list of common caregiving tasks provided below. Which tasks are you performing now to support someone else’s care? Which do you expect to perform in the future? Never? Place a check in the correct column.
How many of these tasks do you perform now? ________
How many of these tasks do you expect to perform in the future? ________
If you perform even one of the tasks on this list today, even only occasionally, you are now a nonclinical family caregiver—even if you think you are only getting ready.
From This Point Forward
Many family caregivers may use this manual, and each of them will be caring for different people—mothers, fathers, children, siblings, friends, aunts, uncles, grandparents, neighbors. From this point forward, you generally will not see phrases like “persons needing care” or “loved ones.” Rather, you will see names of people or terms like “Mom,” “Dad,” “Grandpa,” “Uncle Ed,” “your husband,” “your wife,” and “your partner.” After all, family caregiving is one of the most personal things you can do—it is never neutral.
Keep in mind, also, that while everyone’s caregiving situation is unique, quality caregiving shares many of the same characteristics regardless of the setting or the disabilities or chronic illnesses of the people receiving care.
This advertisement could appear in every daily newspaper and on every jobs website.
HELP WANTED
Informal Family Caregiver: Total responsibility for a family member or loved one. Twenty-four hours of work per day. On call seven days per week, fifty-two weeks per year. No pay. No employee benefits. No training. Circumstances change daily—medically, emotionally, and practically. No vacation, no sick days, little to no time off. Job comes with a high stress level and a strong possibility of depression and diminishment or loss of one’s social and recreational life.
Must have current knowledge of related legal, financial, practical services, and resources needed to cope with all potential circumstances of caregiving essentials. Extraordinary capability for patience. Must be able to deal with guilt, anger, and resentment. Must be able to find access and use the long-term healthcare system. Must produce practical problem solving solutions on demand. All skills must be learned on the job by accident, luck, or basic intuition. Side benefits: poor health, financial ruin, and loss of self-identity. No terms are negotiable. Apply at: Your Home, Anywhere, USA.
