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.
Understanding the benefit of planning ahead