Читать книгу The Family Caregiver's Manual - David Levy - Страница 12
ОглавлениеUnderstanding 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:
What kinds of responsibilities does the caregiver have to meet?
What specific family circumstances are of concern?
What caregiving issues are of greatest concern in the caregiver’s mind?
Which of those concerns affect planning and approaches to the caregiver’s tasks?
What solutions are available now?
What changes are likely to occur over time that may alter which solutions work?
What could the caregiver do now to create more positive outcomes down the road?
In what ways are your experiences similar to these caregivers’ experiences?
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 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 family circumstances: Eleanor sees herself as the only person who can provide child care. She wants to grow in her profession but is beginning to feel the pressures of both working and raising her children. Her concern for her grandparents, who are the only parents she’s really had, have added to her concerns, and she is faced with making even more decisions that will affect how she balances family and work life.
Caregiving issues: Balancing the demands of two distinct types of caregiving (child care versus family caregiving for elders), both of which are likely to increase as Eleanor’s children get older and more active socially. Determining the nature and potential severity of her grandfather’s memory loss, whether treatment is available, and, if not, what may happen over time.
Concerns affecting approaches to tasks: Growing frustration due to having to put her own plans on hold and unknowns about her children’s welfare. She is lonely and wants to add to her own life with some adult companionship. She is using caregiving and child rearing as an excuse not to get out, in spite of her mother-in-law offering to watch the children and help out in other ways.
Solutions available now: See what her church offers in local child care. See if there is a senior center where her grandparents might find social interaction. Does the VA have survivor’s benefits in addition to the child-care stipend that Eleanor and her children might be eligible for? Does her workplace have an Employee Assistance Program (EAP) that might help her work out plans for her children or grandparents?
Changes that may alter which solutions work: Further deterioration of either of her grandparent’s health, changes in her work circumstances (e.g., a promotion that requires her to spend more time working, slower salary growth due to a perception held by her manager that she is not working as hard as she should), or her son’s asthma getting worse and requiring more of her time and money to keep him healthy.
Creating more positive outcomes: Eleanor needs to learn more about her grandparents’ financial resources so she knows what she has to work with for their care. If her grandfather does have dementia, she may have to take over management of household expenses and other practical matters he has handled over the years. She also needs to recognize that she does not have to do everything herself. Her mother-in-law, for example, is ready to help with the children at any time. There may also be a local support group for military widows through which she may be able to find emotional and practical support. Also, if her grandfather has dementia, she could join a support group for adult children caring for parents (and grandparents). Eleanor also needs to consider how she is protecting her own children in the event something happens to her.
Ed and Harriet
Ed and Harriet had been very lucky. They ran a successful business together and had been planning for an early retirement (being the same age, both were planning to retire at fifty-five after selling the business), and had a wonderful family. Both of their kids were smart and had a great work ethic. Their daughter, twenty-one-year-old Coral, was working toward a veterinary degree. Their son, nineteen-year-old Ed Junior, was planning on being an engineer. Everything was working out perfectly. Then the accident happened.
Ed Junior had a passion for competitive diving and stayed in the water as much as he could. A few months ago, he and a friend went to Fort Lauderdale to visit Harriet’s sister Ellen. They were having a great time, swimming in the ocean, scuba diving, and hanging around the pool at Ellen’s housing complex. A couple of days before the boys were scheduled to return home, Ed Junior was playing around on the diving board at the housing complex pool, and he slipped and fell off the high diving board ladder. He fell backward and landed in a way that broke his neck, and he was left paralyzed from the neck down. Everyone hoped the paralysis would be temporary, and he would recover, but it is now clear it is not temporary and nothing further can be done. Ed Junior was transferred from a Florida hospital to take up at least temporary residence in the best extended-care facility near home, but he wants desperately to come home to be with the family.
The bills for insurance deductibles and specialized care are thousands of dollars, and Ed and Harriet’s bank accounts are dwindling fast. Their three-story townhouse is in no way ready to accommodate Ed Junior’s special needs. Coral is getting ready to begin her advanced degree program, which means more dollars will have to be added to her already high tuition. Ed and Harriet have to keep the business going, which takes both of them.
Observations
Here are a few observations about Ed’s and Harriet’s caregiving concerns. Much more could be said. What other observations do you think are important?
Responsibilities: Self-care, a father’s need to care for his family, a mother’s need to care for her children, educational expenses, work demands, fulfilling parents’ needs for social engagement, working together as a couple, maintaining a marriage.
Specific family circumstances: Ed and Harriet are concerned about paying for their daughter’s education, as well as Ed Junior’s care needs and, they hope, his continuing his education. They need to find out if Ed Junior will qualify for Social Security Disability Insurance (SSDI). Posted near the swimming pool diving board were two signs that read, “Dive at your own risk,” so Ed Junior’s legal rights may be limited.
Ed and Harriet see themselves having to put their plans for early retirement on hold because already their financial resources are being reduced, and they find this frustrating and disappointing. They are concerned about Ed Junior’s physical condition, his mental and emotional health, and whether they will be able to meet his expectation of coming home—and how that would affect how they live their own lives.
Caregiving issues: The care that Ed Junior will require if he comes home is unknown, and he is in a short-term care facility. How to figure out what happens next is a challenge. They need the help of a good disability attorney to understand the technicalities of what is available.
Solutions available now: Continue to work together as they always have to solve problems, finding out what would be necessary to bring Ed Junior home and how his physical care needs are to be provided for. They need to take a fresh look at financial resources (including insurance options, especially under the newly enacted Affordable Care Act) to see how to improve their total financial profile in light of current demands. Seek out specialized support from organizations that address spinal cord injury issues (including support groups). Determine whether existing insurance coverage and discretionary savings can be used for uncovered and additional expenses. Their lifelong experience working as a team and good business sense might be used as a foundation for practical problem solving related to family caregiving (e.g., knowing that trained professionals may offer good advice).
Changes that may alter which solutions work: Decline in Ed Junior’s physical or mental health, reductions in financial resources, letting personal frustration of their own expectations overcome them, current research in spinal cord injury (e.g., stem cell regeneration) that is showing positive results for treatment and recovery.
Creating more positive outcomes: Was negligence part of Ed Junior’s slip and fall from the ladder? If so, they may need to consult a personal injury attorney to consider a lawsuit and a disability attorney about a Special Needs Trust to maintain the proceeds of a possible settlement in order to allow future coverage under SSDI, Medicaid, etc. It might be useful for Ed and Harriet to call a family meeting to let Coral and possibly Ed Junior (if he is mentally and physically strong enough) participate in the decision-making process and allow everyone to share feelings and manage expectations. A review of financial resources could be productive; changes may be necessary in how resources are managed and new options could be put into place (e.g., a different insurance policy, change in how investments are arranged so that some funds are more readily accessed with less loss). A review of legal documents (e.g., wills, healthcare surrogacy documents) may also be helpful.
Money, work, insurance, housing, security, time, care for the healthy and for people needing care, personal expectations and needs, healthcare law, family relationships and dynamics—these and other factors affect how family caregivers feel about caregiving and how they make decisions.
In each of the examples provided in this chapter, the family caregivers had expectations about how their lives would unfold, even though they may not have prepared as much as they should have for their futures or considered that some of life’s changes could be so devastating. However, regardless of what plans existed before the need to provide care for a person with a chronic illness or disability arose, the realities of family caregiving always change outcomes for both family caregivers and the people they care for.
Family caregivers had expectations about how their lives would unfold, even though they may not have prepared as much as they should have for their futures or considered that some of life’s changes could be so devastating.
None of the caregivers discussed had been trained to be family caregivers. They hadn’t thought about being a family caregiver for an adult child or how to prepare to be a family caregiver for someone with severe or chronic health concerns. Their life experiences may have led them to believe they were prepared for anything. If they have experience in planning (for business needs, for example), it is unlikely that they have learned how to transfer planning skills used to meet such needs to planning for caregiving needs. However, family caregiving professionals have found that when faced with the emotional stresses of family caregiving, even the most effective business and medical professionals are too distressed to apply the skills they may demonstrate in a work environment. Yet, considering the challenges they face, it is clear their success certainly will depend on thinking ahead and learning whatever they can about the caregiving needs that must be met. It also will depend on preparing for the unexpected.
Remember, these are “snapshots” representative of a million different caregiving scenarios. They are included to give you the opportunity to think in terms of planning, instead of just reacting, by recognizing that emotions and inexperience make the task even harder.
The remainder of the Manual can help you become a more prepared, educated caregiver who, in turn, may be better able to face both the expected and the unexpected.
