The Family Caregiver's Manual. David Levy
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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 to sell. If his wife qualifies for Medicaid (which may take care of most of her medical expenses) and he applies for Social Security, he may want to join a no-premium Medicare Advantage program and will need to find out about open enrollment, which plan offers a formulary that matches his prescription needs, whether his physicians are enrolled in the programs he looks at, and the need to provide related resources.
Concerns affecting approaches to tasks: Hector fears retirement, which will be accompanied by greatly reduced income. It is a constant worry that affects his decision-making. Because of increasing stress as he watches Juana’s condition deteriorate and her care needs escalate, combined with financial worries, Hector is sliding into depression and becoming less capable of making positive decisions both at home and at work.
Solutions available now: Hector can begin drawing Social Security now, but if he delays until age seventy, he will get the maximum allowed. Because both he and Juana are seniors, there may be services available through government programs in addition to what is covered under Medicare. Hector served in the Coast Guard and may qualify for VA benefits for himself and Juana, and perhaps he can use his legal plan (provided as a company benefit) to speak to an elder law attorney about how Juana can apply for and receive Medicaid to cover increasing expenses and the cost of a nursing home in case she needs one. If a Diversion Program is available under Medicaid, Medicaid may help with providing paid in-home care for a few hours a day. He needs to ask his priest at church this Sunday if they have volunteers who can help out, especially when he has to be away overnight.
Changes that may alter which solutions work: Juana’s condition will get worse, and she will need more care. Hector must retire in two years but may lose his job sooner. Hector’s health could deteriorate if he doesn’t make personal changes, and that, along with his age, will make it harder to find even menial work to supplement post-retirement expenses.
Creating more positive outcomes: Hector needs to find ways to reduce his stress. He knows what the problems are but is stuck on worrying about his job. He sees work as his only solution. Although family caregiving is not a “disease” or, typically, a mental health issue, he might seek the help of a psychologist to talk through his stress and look at alternative ways to make decisions. He may need the help of an elder care/disabled care specialist. He could join a support group for those caring for spouses with chronic illness. He could seek assistance from local, county, and state elder care agencies.
Eleanor
Since starting work just after her marriage, thirty-one-year-old Eleanor has been gradually moving ahead in her position as a financial manager. Her husband, Will, a sergeant in the Army, was killed two years ago while serving in Afghanistan, leaving her alone to take care of their now four-year-old son, Joseph, and two-year-old daughter, Anne, whom he never got to see in person. Will’s military life insurance money (which was only $10,000) is dribbling away toward things like home and care upkeep. Her salary is modest, and she gets a small amount of money from the VA to take care of the children. They had no savings when Will died, so things have been tight. Paying the mortgage and paying for childcare is not easy, especially when Joseph has a bout of asthma and his expensive medicines have to be refilled often. Her mother-in-law has offered to take care of the children—to pick them up from day care or stay at Eleanor’s house when a child is ill so that Eleanor can work—but Eleanor insists on doing it all herself. So far, she has been making ends meet and has been able to handle things at work and at home without using too many sick leave hours, at least not so many that anyone has seemed to notice.
However, recently she had to begin taking additional time off—her grandparents are having difficulty taking care of day-to-day needs, and she is spending more and more time taking care of things such as tracking and paying their bills. Eleanor was an only child and both of her parents died in a car crash when she was only thirteen. From then on she was raised by her grandparents, who are now in their late seventies and live a few miles from her. Her grandmother, Alice, is still mentally alert but is getting very frail. Eleanor worries about Alice, but it is her grandfather, Joseph Senior, who worries her the most. Lately he has been very forgetful. Eleanor just found out he has been experiencing memory problems for a while, but neither he nor Alice wanted to say anything to her; they do not want to worry her, and Alice is terrified of what may happen if Joseph Senior gets worse.
Observations
Here are a few observations about Eleanor’s caregiving concerns. Much more could be said. What other observations do you think are important?
Responsibilities: Child care, elder care, day-to-day demands of work, increasing financial resources for future care, self-care, and the need for her own social interaction.
Specific