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 is sometimes a challenge. Whether you think that one day you may have to be a family caregiver or you are already actively caring for a loved one and feeling the stress of caregiving—planning takes time. Planning will be one more thing on a long list of things to do. However, the time spent planning now can give you more freedom to act later, easing both the burdens and the stresses of family caregiving.
On the following pages you will find three examples of why planning can make a difference, whether you are thinking ahead about caregiving or are in the midst of it.
The stories presented are fictional, but the details are based on real experiences of family caregivers. They represent typical family caregivers: an older man who must work while taking care of his wife who has multiple sclerosis; a young widow who works in a demanding profession and takes care of her two children and now must plan how to care for her grandparents; and a mid-fifties couple who have difficult choices to make when faced with the need to care for their recently paralyzed son.
As you review the stories presented, keep in mind that the function of planning is to provide the family caregiver with peace-of-mind while ensuring the quality of life of the person who needs ongoing support. As you read, consider the following questions, which are written so they represent any family caregiver:
As part of having an effective plan, you need to revisit any plans you develop frequently. The answers to the questions listed above change over the course of time related to both the person being cared for and the caregiver.
Hector and Juana
Hector is a sixty-eight-year-old sales manager for a specialty plastics company, Colco, Inc., located in a major Northeast city. He should have retired at age sixty-five but requested a delay in retirement until he is seventy because he needs the income to support himself and his wife, Juana. Juana, age sixty-seven, has multiple sclerosis (MS), which was diagnosed when she was fifty-five. She has been unable to work since she was fifty-eight because of “brain fog” caused by the MS and was on a modest Social Security disability claim, but when she turned sixty-five enrolled in standard, Medicare Fee-for-Service (FFS).
Because of the economy, Colco has undergone two reorganizations under bankruptcy and Hector’s company pension was lost. He too is enrolled in Medicare FFS, has a small Individual Retirement Account (IRA), and has a good benefits plan for legal and dental coverage that the company was able to keep. He and Juana own their small bungalow. He makes a fair living like most people in the area; however, salaries are not that high, even for managers, and Colco hasn’t given raises or cost-of-living adjustments since the last bankruptcy in 2007. Hector is feeling the pressure of keeping up sales and dealing with younger sales staff
