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 he supervises, all of whom are more than willing to take his place. He feels uneasy about whether Colco will keep their agreement about allowing him to work until age seventy; he is counting on his continued income for at least the next two years and wonders whether Colco’s management might find it to the company’s advantage to let him go earlier. He also contends with meeting the time demands, emotional demands, and expenses of caregiving, and, at the same time, managing his own health problems—weight and hypertension.
Juana’s condition is worsening, and she is now barely able to climb the stairs to the bedrooms in their nearly fifty-year-old bungalow; she needs the help of safety railings on both sides of the stairs. She used to be able to get outside using a cane and was able to get around the house without one, but she now has to use a walker in the house and a wheelchair if they go out. If Juana needs to go to the doctor, Hector typically takes her because the only free medical transport Juana can use is often unavailable. Last week, Hector had to attend a two-day sales meeting in another city. Not only did he have to arrange for someone to stay with Juana while he was gone, but they had to pay for an expensive taxi to take Juana to an important medical appointment. (They have no children and no relatives who live nearby, and this time the neighbors and friends who Hector and Juana have assisted in the past could not or would not provide the needed transportation.)
Hector has reached the point where even the most minor issues upset him, such as Juana preferring more expensive adult diapers while Hector tries to save a few dollars by buying the less expensive ones. He is drinking more, has trouble sleeping, and is in a constant state of anxiety. His doctor tells him repeatedly that he needs to take better care of himself.
Observations
Here are a few observations about Hector’s caregiving concerns. Much more could be said. What other observations do you think are important?
Responsibilities: It is critical at this point that Hector keeps his job to continue paying the bills. He has to make sure Juana is cared for now but also needs to prepare for the things she is sure to need to receive care in the future.
Specific family circumstances: There are no family members who can help. Hector is ignoring his own healthcare, creating additional health problems that need to be addressed (use of alcohol, poor diet, high blood pressure). His stress is affecting how he feels when confronted with Juana’s requests or demands (“one more thing to do,” anger, frustration, and feeling that Juana doesn’t understand their need to watch spending).
Caregiving issues: Transportation, the need to prepare their house for Juana’s worsening condition or, perhaps, consider selling and moving to a single-story home. Hector must also consider the need to provide increasing amounts of in-home care while he is at work and determine exactly what other resources he might need. For example, Hector may need to seek legal help to qualify his wife for Medicaid. He may need to see if there is a local adult day care Juana could attend and whether it offers door-to-door transportation. He could check with a broker to see what his house is worth and how long the average house on the market takes