The Family Caregiver's Manual. David Levy
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.
To benefit from information, you need to understand why it is needed and how to use it effectively. As a family caregiver, your attitude influences your use of information in a big way.
Whether planning for your own care or the care of someone else, a positive attitude is critical to success. Not believing you can meet the challenges of caregiving is the greatest barrier to effective caregiving. To be an effective